A Journey to Somewhere...

Number 12

2011-09-01T15:12:00.004-05:00

So far, I haven’t done much along the lines of attacking my “30 Before 30 List”. But this month I’m diving in. And the first thing I’m going after is number 12 - Stop drinking soda for a month (30 days). I’m starting today, September 1st, and the plan is to not drink any soda for the rest of the month at least.

I also plan to start on number 16 - Get to the point of being able to run at least 1 mile without stopping. My plan is to join a gym next week near where I nanny and start going at least a few times a week to build up my walking/running stamina.

And I am on my way to completing number 28 - Donate books, clothes, stuffed animals, etc. (SIMPLIFY!). Eric and I have made one trip to Savers with donations and there is another trip in our near future with more stuff.

So there are three things to start and hopefully accomplish or at least get underway this month. Now to work on planning some of the bigger things, some of the trips that will require a bit more than just deciding I’m going to start it some month or day.

And as a little bit of an aside, I had a wonderful vacation last month which began with Eric proposing! So I am now engaged and will be occupied with planning a wedding while trying to complete the “30 Before 30 List”. We’re shooting for a late-February wedding which means approximately a 6-month engagement - not a long time to plan a wedding but I’m sure we’ll be able to pull it off. And it’s kind of funny because when I was making up my 30 list, in the back of my head I had this thought to put “Get engaged” down but I didn’t want to put anything down that wasn’t fully under my control. I may still tweak and adjust the list, though. But I’ll probably post updates if/when they are made so I still feel like I’m holding myself accountable in some way to stick to the list.

So here’s to a good month and starting towards checking things off of the list!

Yours,

Penguini

My Beach

2011-07-20T09:03:00.002-05:00

This is my beach
Early in the morning
Quiet
Empty
Peaceful
It's where I find my soul
As the waves crash in
And slowly ease back out
Into the enormity of the ocean
Later the beach will change
It will get crowded
People will run to cool off in the water
Dig holes
Build castles
But for now it's mine
I let my feet sink into the sand
I wiggle my toes
And feel the grains rub my skin
I smell the salty air
Feel the sun shining on my skin
I close my eyes
And just listen
As the waves crash in
And recede
The heartbeat
Of my beach

30 Before 30 List

2011-07-20T08:46:00.003-05:00

Hello old blog! It's been a while! I never have the intention of going so long without posting anything but life seems to sweep me up and I either find myself with very little free time and energy to sit and write or no inspiration. Or, even worse as far as I'm concerned, I sit down with an actual subject in mind to write about and can't manage to get more than a paragraph written. The words don't always come easily and it's hard to share things that I don't feel satisfied with.

But I'm coming here today to share something I've been working on for about a month (or more now). It's my "30 Before 30 List" - a list of 30 things I want or intend to do before I turn 30 which is now less than a year away since my 29th birthday passed by just a few weeks ago. The list is a combination of intentions to focus on getting healthier, places I want to visit, and just general things I want to do in the next year. I wasn't sure if I was going to share the list or not but I think I'll just go ahead and do it. Maybe it will hold me more accountable to actually DO the things I want to do? So here it goes:

30 Before 30 List

1) Visit New York
2) See at least one Broadway show (in NY)
3) See Niagara Falls
4) Spend a whole day at Pemaquid Point (breakfast to sunset)
5) Stay overnight on Monhegan Island
6) See a live taping of A Prairie Home Companion
7) Re-visit the cathedrals in Montreal
8) Watch a sunrise (with Eric)
9) Spend a weekend/few days alone on a meditative retreat (Kripalu or similar)
10) Meditate everyday for a month (30 days)
11) Develop a regular yoga routine (at least once per week, at home or at a studio)
12) Stop drinking soda for a month (30 days)
13) Drink green smoothies for 1 meal a day for a month (30 days)
14) Don’t eat refined sugar for a month (30 days)
15) Floss everyday for a month (30 days)
16) Get to the point of being able to run at least 1 mile without stopping
17) Go to bed by 10:00 everyday for a month (30 days)
18) Have a successful indoor/container/”apartment” garden (with vegetables and/or herbs)
19) Begin writing my health story/autobiography/memoirs
20) Write for 15 minutes a day for a month (30 days)
21) Watch “Gone with the Wind”
22) Watch “Casablanca”
23) Knit a pair of socks
24) Knit a sweater
25) Maintain a savings account of at least $4000
26) Re-read “The Alchemist”
27) Read "Dr. Zhivago
28) Donate books, clothes, stuffed animals, etc. (SIMPLIFY!)
29) Apply to volunteer at Camp Sunshine
30) Start to learn to play guitar

So there it is. I've still been changing things right up until this very second (I just changed something right before I wrote this sentence). So I don't know if it will stay with these 30 things or if I will change something as the year progresses. And I don't know if that's something I should do or if I should stick to these 30 things. But, you know what, it's my 30 Before 30 List so I guess I can do whatever I want with it. Because in the end it matters whether I'm happy with what I've accomplished (or not managed to accomplish).

So I guess I better get busy getting things done and making plans for the upcoming year! I think this is going to be a fun year!

Yours,
Penguini

New Year's Commitments

2011-01-15T14:56:00.010-05:00

So I seem to have something against New Year's resolutions. It's not so much the idea that I have an issue with, it's that they have become something that people go overboard with and then by the end of January, most (if not all) of them have fallen by the wayside. If they were things that people really committed to, I feel like the concept would hold more weight and I'd be able to take it more seriously. But, like I said, I kind of like the idea of taking the time at the beginning of the year (or really any time one can make a conscious, positive change in their life) to think about what we would like to change about our lives and realistic things we can do to make that change happen. I think sometimes people sabotage their own resolutions by aiming a little too high. They might really wish they could go to the gym five times a week, eat only healthy food, and lose a lot of weight. But when it comes down to the reality of it, life can get in the way. The first week things might go well, but when something comes up during the second or third week and getting to the gym becomes more difficult or picking up a pizza on the way home from work is all you have energy for, it's easy to quickly forget about the resolutions you made or to just decide that they're not worth the effort involved. And we want instant gratification which is an issue I think most, if not all, of us have. So when we haven't seen the results we want after a few weeks or a month, we lose our motivation to keep it up and revert back to our old ways.

I'm not by any means saying that everyone is like this, I am sure there are people who make New Years resoultions who stand by them and keep them throughout the year, but that doesn't seem to be the norm. And I want to get away from the idea of only making these life changes at the beginning of the year when they can be made purposefully anytime in the year.

So, now that I've gotten all that off my chest, I do have some changes that I would like to make in my life. I will call them committments. So here are my commitments.

1) I want to make time to write more often - daily if I can and if not daily then at least 3 or 4 times a week. The writing doesn't need to be anything fancy or that I would share with anyone, but more for myself. I really love writing, it is such a great tool of self expression, and I have not done a very good job of doing it on a regular basis. But I would like to change that. So I'm making a commitment to doing this for myself.

2) I want to work on my financial stability and building up my savings. This has been hard for me to do in the past for various reasons but I feel like now is the time when I am finally able to focus on this. I'm not going to put a monetary amount for how much I want to save, but I'm making a commitment to put some money into my savings every month (and leaving it there).

3) I want to really take the time to do the things necessary to take care of myself. That seems really broad so I'll break it down into the things that are most important to me right now (and that I feel are most realistic).

a) I'm making a commitment to get more sleep on a regular basis. My goal is at least 9 hours most nights (which means going to bed by 9 the nights before I work) and no less than 8 hours.

b) I'm making a commitment to taking all my pills and medication and taking them on time (or as close to on time as possible).

4) I want to start getting rid of things I don't need or use. This will be a slow process, but I'm making a commitment to taking the first steps and beginning to look around at my apartment with more critical eyes, more willing to admit that I don't actually need or use everything.

That's pretty much it for the biggest things I want to focus on. There are other little things I want to do, like being better about watching my Netflix movies and returning them. And spending more time with my cats (which may seem silly to some people but cat people will understand). And in the back of my mind I do have those big ideas that I know would be great for me to do but right now are just too much for me to try to commit to. One step at a time. And when all of these things become second nature, then I'll be able to take on more changes. You can't try to change everything at once or you're just setting yourself up for disaster. And I'm not saying I'll definitely manage with what I'm trying to commit myself to, but it seems to be a somewhat manageable list.

I challenge you all to think about your life and come up with just a few things, not enormous things, that you can start to work towards changing. I feel like making huge leaps towards changing things can more often result in falling flat on your face, but if you take smaller steps and do things a little at a time, you can be more likely to actually reach your goal and create a change that will stick. So, what can you commit to?

Yours,
Penguini

Thirteen Years

2010-12-14T18:50:00.001-05:00

I am approaching the anniversary of my Lyme disease diagnosis. This year it will be thirteen years since that initial diagnosis. And I am struggling with it. Every year as the end of December approaches (I was diagnosed somewhere at the very end of December in 1997, I would have said it was the 28th but apparently that was a Sunday) I think about the number of years since my diagnosis, everything I have been through, etc. And I usually get really frustrated that there doesn’t seem to be a light at the end of the tunnel. After thirteen years of being DIAGNOSED shouldn’t I be BETTER? Better is relative, and I am better than I have been, but I am not “well”. And in order to function, I rely on dozens of medications and supplements as well as daily IV infusions. The medications have been part of this journey for the past thirteen years and I really can’t think of a time when there was truly a break - I mean a break from all medications, not just antibiotics and Lyme treatment. There have always been medications and supplements to take for headaches, nausea, sleep, gastroparesis, etc. And for the past five and a half years, daily IV infusions have been a part of the mix as well.

I want to be able to say I’m done with it all. I want to be able to move on with my life and not have to schedule it around medicine and food and fluids. And if it can’t happen now, if I can’t be done with it now, I want to feel like that will happen SOMETIME. There is no way of knowing if or when I will be able to get off of some of these medications, or if there will be a time when I don’t rely on IVs everyday. I don’t want to reach this time of year in 2012 - fifteen years since my diagnosis - and still be stuck where I am now. That year will be the point at which I will have been sick for half of my life. And from that point on, the time scales will be tipped.

At this point, I really don’t remember what it was like to live life without chronic illness being a huge part of it. I was fifteen when I got really sick, so yes I do have memories from before I got sick. But not really of the day-to-day life. I don’t remember what it was like to not have to think about the things that are constantly running through my head now and have been for so many years. I have alarms that go off every few hours to remind me to take various medications. I often get woken up in the middle of the night because my IV pump battery has died and I have to replace it. I worry about having enough energy to run errands on bad days and therefore push myself to do too much when I’m having a not-so-bad day. I don’t remember what it’s like to not deal with all of that.

I don’t mean to sound all depressed and glum. Things aren’t as bad as they could be. I have been so much sicker than I am now. I am able to work, I am living on my own (with help from my parents), I am in a relationship with a wonderful guy, I am able to do fun things sometimes. But I can’t help but long for a time when I am “well” and don’t have to work so hard to function at the level I’m functioning at right now. My doctor acknowledged at my last appointment that I’m able to do a lot, but I have to work extremely hard to do it and I shouldn’t have to work that hard.

When I think about thirteen years and what that looks like, it’s overwhelming. And I can’t help but feel like I won’t ever be “well”. Maybe that’s true, maybe I won’t ever be “well”, maybe this is the best it will be and I will have to work this hard to function for the rest of my life. Maybe I will be on medication and rely on IVs and be afraid of crashing or getting worse. I’m just not ready to accept that. And I don’t know if I ever will.

So for now I will push forward, I guess. I’ll get through this month and into the next one. And if that’s too much, I’ll get through this week. And if that seems like a huge mountain to climb, I’ll focus on this day, or this hour, or this minute, and just do what I can do to make it through that. And eventually maybe it will get easier again and I won’t have to work so hard. Or maybe it won’t and I’ll just get better at accepting it.

Yours,
Penguini

Am I Kidding Myself?

2009-07-26T22:40:00.000-05:00

Wow, it has been a really long time since I’ve posted anything on here. I usually have a lot of ideas of things to write but either I forget them before I have a chance to write anything, I start writing and don’t get anywhere, and/or I’m just too tired to type anything. But now I’ve been wanting to write something for a few weeks and actually started writing a couple of times but I only get a few sentences written before I either give up due to fatigue and brain fog or I just don’t know what to write next. It’s also hard for me to write things for this site without having them turn out sounding depressed or negative these days. I’m not sure why that is but I’ll try to explain what’s going on with me which may help to explain more of the lack of blogging. So bear with me as I try to write some of what is on my mind.

The topic I have tried writing about a few times in the last few weeks is essentially this: Am I really that much “better” or am I just kidding myself? This has been on my mind a lot as I’ve been thinking about how I’m feeling lately and trying to compare it to how I was feeling a month ago, six months ago, a year ago, five years ago, etc. When I try to do these comparisons, I’m just not sure how much “better” I really am. I’m definitely better in some areas than where I was a year ago when I was having (almost) daily high fevers and just basically getting sicker and sicker which resulted in a 10-day hospitalization in November. But that was from a line infection (in my port-a-cath) and as far as my “normal” health stuff goes, it’s hard to tell where I am compared to a few years ago. And it makes me wonder how much the treatments I’m on are going to do as far as permanent recovery. By permanent I don’t even necessarily mean that it would last forever, but just the kind of recovery or remission that would allow me to stop the treatments and remain stable for longer than a month before going downhill again.

I’ve written a lot about the difficulties of dealing with chronic illness for such a long time and the kinds of struggles that go along with it. There’s so much to deal with – the treatments, IVs, pills, doctor’s appointments, spending whole weekends (or longer) in bed resting trying to regain some energy and strength, worrying about what might be going on that hasn’t been identified yet, etc. It’s hard and it wears you down which I think is just to be expected. You can’t deal with all of this and be positive all the time. You’re going to have break-downs, you’re going to be depressed sometimes, you’re going to be angry at the world, you’re going to be mad and frustrated at your body, and you’re going to lash out sometimes at people who just don’t “get it” (and some who don’t seem to even try). There are days when all I want to do is throw out all the medical stuff, cancel doctor’s appointments, and just be free from it all and let the diseases do what they’re going to do. It just gets hard to deal with it all day after day when there doesn’t seem to be an end in sight.

When I saw my PCP/LLMD (Lyme Literate Medical Doctor) in the early spring, I told her that I had a goal to be off of IVs, at least on a daily basis, in a year. This goal surprised her and, although she didn’t outright tell me it was an unrealistic goal, she basically said it’s not that likely to happen but that it’s good for me to have a goal to work towards, “Even if it doesn’t happen.” That was probably four months ago at least and I’m not any closer to seeing that light at the end of the tunnel of being able to stop the IVs. I’ve had to decrease the dose of my IV antibiotic for the summer due to awful sun sensitivity which was frustrating because I was tolerating the higher dose well and was hoping that it might help me see a little more improvement along with an oral antibiotic that was added to my treatment to hopefully get at the Bartonella (another tick-borne disease, also called Cat Scratch Disease/Fever).

At this point I have been on so many different treatments and my options of other things to try are becoming more limited. This is somewhat scary and frustrating because it really makes me wonder if I’ll ever be well enough and have made enough progress to be able to go off treatment. There’s a newer IV antibiotic that I tried at the beginning of this month because I was able to get about a week of it for free through my doctor’s office. I was hopeful about this new treatment because it’s supposed to act in a way that’s different from other antibiotics but after two doses I was feeling so awful from side effects that I was miserable and ended up stopping after just three days. But my doctor still wants me to try to get it covered by insurance and go on it for longer, maybe only doing it three days a week. However, getting it approved by insurance is kind of a long shot. And would it be worth it to deal with all the awful side effects I was having and how sick I felt on it? I don’t know that it would help, but I think I’m at a point where I’m ready to go full force into anything my doctor wants to try because I don’t have a lot of options left.

And then I wonder if we are missing a piece (or multiple pieces) of the puzzle. Are we ignoring some kind of underlying issue that would make a difference to have identified? For a long time, probably since reading much about it and/or meeting and getting to know people who have it, I’ve been suspicious that I have Mitochondrial Disease that just makes everything worse and harder to treat. The pieces seem to fit with this but for some reason I haven’t made the leap to see a Mito specialist…yet. About three years ago I was close to pursuing it but just didn’t. And now, since I kind of have this goal lingering in the future, I’m very close to taking the leap and making an appointment with this doctor. I just don’t want to go through all the annoyance of seeing a new doctor, having to go through all my medical stuff with them, if it isn’t actually that likely that it will be helpful. So everyday I think about it, I go back and forth, and it’s kind of a way of procrastinating. Because the longer I take to decide whether to even make an appointment with this doctor, the longer I can go before having to deal with it. But the thing that is most compelling in my mind that I really do have Mito or something like it is that people I know who have it have wondered if I might have it, too, without me saying anything about my suspicions.

In past blog entries, I’ve also talked about how I’ve found it almost more difficult to be feeling better and able to do more things than to be sick and house/bedbound because at least when you’re really sick and unable to function in the world very well, you know not to expect to be able to go out and do things. But when you’re able to be doing more, you have so much more to lose. I’m not saying it’s worse to be doing better, it’s just hard in a different way.

Okay, I’ve kind of gotten away from the original topic here. Am I really that much better than I was a few years ago? Yes, I’m working. Yes, I was able to live on my own essentially for two years and mostly support myself (except for all my medical expenses and other major, unexpected expenses). But does this mean I’m really much better? Or am I just better at handling the symptoms? Do I just have more treatments that keep me stable? I know that without my IV hydration/vitamins/amino acids (but mostly it’s the hydration, I think) I crash and have a lot of trouble functioning. I know that if I’m off antibiotics for more than a few weeks or a month, I start getting worse. So does that count as being “better” than I was?

I don’t want to rely on IVs of any kind for the rest of my life. I don’t want to be dragging around backpacks of infusions everyday for years to come. If I do have to be on these IVs for a lot longer (as in many years into the future) I just wish I knew that’s how it’s going to be. I hate the unknown and having very little control over it all.

And the other thing that’s frustrating is dealing with people who really don’t understand what it’s like to live with a chronic, debilitating illness and have to put up with all of this stuff. I just (finally) got out of an apartment situation where my roommate thought she understood much more than she did and jumped to all kinds of conclusions, made all kinds of assumptions, that were wrong. And there are people who see me in little spurts and I think it’s hard for them to see that they are only seeing one tiny little bit of my life. It’s hard enough to deal with all the medical stuff, but dealing with people is sometimes even harder. There aren’t many people who really understand. And they understand because they deal with their own illnesses, their own issues that are so similar to mine but at the same time they don’t presume to know what it’s like to be dealing with my unique issues and I do my best to do the same back to them. I just wish I could be around these kinds of people more often. I wish they didn’t not live so far away from me.

So, you can probably tell I’m struggling with some things right now. And right at this moment I’m struggling to stay awake to finish writing this. I started my long infusion (hydration, vitamins, amino acids – sometimes I refer to it as PPN: Partial Parenteral Nutrition) late today so it’s not going to be done for a few more hours but I’ll probably go to sleep for a while and let my pump wake me up when the infusion finishes. I’m not sure that I ended up writing anything meaningful. I’m not sure that I wrote what I wanted to write. But at least I’ve written something. And maybe now that I’ve written on here again, I’ll keep the ball rolling and keep writing and reflecting. I certainly have a lot of ideas of things to write about, they just somehow seem more interesting and meaningful in my head sometimes.

Yours,
Penguini

How can I not love them?

2009-02-16T14:04:00.003-05:00

This is a short video I took the other day with my cell phone. My preschool class slipping and sliding around on the ice and having a ball! (The girl who comes up to me and tells me her hat keeps falling off is a kid I have a very close bond with.)

Yours,
Penguini (aka Miss Annie)

Surviving

2009-02-14T21:57:00.002-05:00

I figured it was about time I wrote something else, regardless of how brief it might be, to put up since my last blogging was pretty depressing. First let me say that that previous blog entry reflects a lot that I often don't verbalize or write about, especially in any kind of venue where many people can read it. It therefore may have shocked some people because I often seem like a very upbeat, optimistic person who doesn't let anything really get to me. And in some ways I am that person.

But in many ways I think that is a persona I put on for the sake of others (and to an extent for myself) to make things easier. It's my survival technique, I guess. Well, one of them. It is easier to go about my life if people see me as okay with everything because then they are less likely to overstep their bounds and hover or go in the opposite direction and run away, thinking I'm just too much to deal with and too intense. And I try not to let things get to me. But it's inevitable that things will catch up with me and, sooner or later, I will have trouble dealing with it all and just need to shut down for a while. When this happens, I have to become even more introverted and usually isolate myself because it takes everything I have just to deal with myself, I can't spend any energy dealing with other people. I guess in a way I have to be selfish for a while. To the outside world it might look like I'm spiraling downward into a pit of despair, but it's another one of my survival mechanisms. I guess I've developed quite a few since I've been dealing with all of this for more than a decade.

I guess what I want to say more than anything else here is that somehow I always get through what I have to get through. I survive, plain and simple. I don't want to live my life in survival mode all the time because that isn't really living. But sometimes it takes everything I have to make it through the next day, hour, or minute and all I can do is go through the motions until things get easier. I don't need people to hover around me, afraid I might break if they turn away for a minute and leave me on my own. But often this is the opposite of what I need. I handle things best when I have my space. It's really only when I'm feeling relatively well that I can really handle interacting with people, especially people who, as well-meaning as they might be, cross the boundaries that I try hard to lay down without having to specifically state them.

And when I'm not feeling well and find it hard enough to just deal with and take care of myself, it feels like a seemingly impossible task to deal with "healthy" people who just don't get it. This isn't all "healthy" people, there are some I can handle in small doses, but so many people either don't get it at all or, even worse, think they get it and can't understand why you don't jump at their suggestions of how to make yourself better. I guess right now I feel a little bit between two worlds - the "healthy" and "sick" worlds. But it's a lot easier for me to relate to those who are, or have been, seriously or chronically ill. In many ways I feel like that world is and always will be much more my home.

The problem is that it is unfortunately a home that exists for me online more than physically around me. So I have to settle for e-mailing, IMing, posting on message boards, and interacting with some of my best friends without seeing them in person more than once every few months, if that often. I'm okay with that, although I wish it was different and I could live in a community with others who understand what it's like to be a young adult dealing with somewhat unusual circumstances. I would be even more okay with it if those physically around me (and I'm mainly talking about non-family members) understood that I am living the best I can and their suggestions, while good-intentioned, are for the most part completely unhelpful and can even be hurtful because I feel I am being judged. (Those of you aware of a recent situation may know what (and who) I'm getting at with this.)

So if you are one of the people that I see on a regular basis and I seem to be struggling more than usual, please recognize that I'm dealing with things the best that I can and allow me to go into survival mode for as long as I need to. Often the more people push, trying to get in and find out what's wrong, the more I withdraw and it ends up backfiring. Try to recognize the boundaries I draw in the sand and give me that space to do what I need to do. Eventually things get a bit easier and I can come out of survival mode, at least for a while. And if you know someone who is in a situation similar to mine, please refrain from offering advice unless they ask for it. I guess I can't really speak for others, but I know I'm not alone in feeling that unasked for advice is frustrating to deal with. Trust that we do what we can and we (usually) know where we have to draw the line. We survive. And hopefully we get to throw in some real living every now and then.

Yours,
Penguini

Really Struggling

2009-01-18T18:50:00.001-05:00

I am really struggling right now. I don’t know exactly how long things have been kind of brewing under the surface, how long I’ve been about ready to burst and feel overwhelmed by everything, how long I have been ignoring my real feelings and just trying to convince everyone else and myself that I’m okay. But I guess that doesn’t really matter now. Looking back, I think I’ve been almost constantly close to a breakdown since before I was in the hospital - when I was so worn down by the fevers and everything else with the infection. After I got out of the hospital in mid-November, I kind of hid my head in the sand and tried to ignore the medical world. I recovered from the staph infection which was a big relief but that didn’t mean that everything was suddenly fine. Things are not fine. They are far from fine. And I just don’t want to deal with it anymore. I don’t want to live around IV schedules. I don’t want to be so exhausted everyday that the thought of having to get up in the morning is painful. I don’t want to have this line in my arm, to be awaiting a call from the surgeon to have a new port placed in my chest, to feel like I can never truly be free from medical contraptions because there is always some foreign tube inside of me.

And I’m beginning to look towards the future with doubts. I don’t know how to really explain it other than saying it seems dim, foggy, unclear, and I am unsure if I will ever feel like I’m really living my life rather than surviving it. And even more difficult, I don’t honestly know how long my road will be. There are times – days, hours, even just moments – when I feel like I will not be here to grow old and grey. There are times when I don’t want to be here. And I don’t know which is worse. Not wanting to be here just brings thoughts that it really wouldn’t be so bad to just give up fighting and let go. I am in so much pain. Beyond anything I reveal to anyone, probably beyond what I allow myself to think about. I have been through so much and I just don’t know if I can muster up the strength to continue on like this for years and years to come. It’s too much sometimes. And on days when hope seems far away and I feel so alone, I wonder if it’s worth it.

Today a seemingly stupid, insignificant thing set me off. After a long morning and afternoon of church, a Parish Committee meeting, and errands of all sorts I came home really looking forward to getting to eat some of the leftover pizza I had made last night – a pizza I had made for myself after making one for my sister (I gave her certificates for homemade pizza for her birthday). But when I got changed into my comfy pjs, ready to settle in for the rest of the day, and went to heat up my pizza I discovered it wasn’t there. I asked around and my sister admitted to eating it for breakfast. This was a pizza she very well knew I had made for myself and without even asking – no text message, no phone call to ask if it was okay – she and her boyfriend ate it. It seems rude, disrespectful, and even if it was not meant to hurt me, it is hurtful that someone would disregard my feelings and do something that they probably realized might be upsetting. It is all made worse by the fact that when I made the pizza last night, I was feeling sick and really not up to making pizza at all. But my sister had asked to turn in one of her certificates and get a pizza last night so I went out to the store for her requested toppings, made the dough from scratch, and made her the pizza she asked for and then, with some of the leftover dough, made one for myself. The precious energy I invested in this endeavor was for her with only a little expended on myself. Of course she didn’t know that until I told her (in a text message) but regardless of that, I was very upset and immediately got back in my regular clothes, borrowed my mom’s snow boots, and went out for a walk because I didn’t want to be here anymore, which I mumbled to my brother as I left the house. And as I walked, I was thinking, “What do I mean that I don’t want to be here anymore? Do I not want to be in the house? Or do I truly not want to be HERE – on the earth, alive, fighting, dealing with all this crap?”

I walked. I texted with my sister to let her know that I was very upset about it but she mostly just jumped down my throat for being upset about it and there wasn’t anything she could say that would make me feel better about it. In my life lately, I’m finding few things that I really look forward to. And as seemingly insignificant as it may seem, I was really looking forward to eating that pizza. It was a little thing, but it kept me going as I ran my errands. I was already exhausted and somewhat upset when I got home (not upset about anything specific, just everything very close to the surface, about ready to bubble over) and then to realize that the little thing I was looking forward to was not there waiting for me…it was too much and I broke down.

As I walked in the bogs, I let my thoughts and tears flow. I cried in anger – towards my sister for eating my pizza (it sounds stupid now), towards this disease for taking so much from me, towards myself for letting things upset me in the first place, towards my body for betraying me and allowing all of this to be so bad. I cried in grief for all that I have lost. I cried because I don’t want to be here anymore. And I cried because I want to be here so badly. I took some pictures with my phone and when I looked back at them I got to some pictures I’d taken of the kids at the preschool and I cried at those pictures, thinking how I care about those kids but don’t want to go back to work. Thinking about how much those kids care about me and how much I don’t want to hurt them in any way. I cried because I don’t feel like I belong anywhere, I don’t want to be anywhere; I just want to be able to go off by myself to some quiet place and leave everything else behind.

I tried to think of someone I could call to talk about all of this, and came up empty handed. I have some friends who kind of understand – friends from the “medical world” – but no one I felt I could call up and cry over the phone about pizza without them thinking I was stupid. And now I’m crying again as I write this and I can’t figure out what I’m crying for, there are just so many things all jumbled together and I’m so tired of all of it. I don’t want any more treatments, no more pills, no more infusions, no more tubes. But I know that if I were to truly stop all my treatment, my quality of life would be gone, I would be totally disabled, and I don’t know that it wouldn’t go on for years and years like that – pain, exhaustion, confusion, nausea, palpitations, sweats and chills, everything I have been dealing with for years and years but on a greater level.

I feel like I am rambling at this point. I don’t know that I’ve written what I wanted to write. I don’t even know what I wanted to write. I just needed to write something. I don’t feel better. I feel like there are still so many tears to cry tonight, so much to cry over, so much to think about, and in some ways, so many decisions to make. I am trying to decide how much I want to fight; even though I know it really isn’t a decision that will end with anything but my going on to do what I have to do. Part of me wants to just rip the PICC line from my arm and give up. And part of me wants to pump myself full of all the medications I can in an attempt to regain any little bit of my life that I can. I don’t want to feel like this, but I can’t help it. I want to be the happy, hopeful person that so many people see me as but I wonder how much of that is really me and how much is a guise I put on for the sake of others and to trick myself into thinking that I’m okay. But I’m not okay. I’m far from okay. And I don’t know when I’ll be okay again.

Learning to Fly

2008-07-23T19:11:00.003-05:00

Presented on July 20, 2008 at
The First Unitarian Universalist Society of Middleboro

“Healing may not be so much about getting better as about
Letting go of everything that is not you,
All the expectations,
All the beliefs,
And becoming who you are.
Not a better you, but a realer you.
We need to let go
To throw away everything that isn’t us
In order to be more whole.”
--Rachel Naomi Remen

When I last stood up here and spoke I was in the midst of a leave of absence from college, I was managing to work a limited number of hours at the Marion Art Center and was teaching theater classes one afternoon a week, I was living with my parents in Rochester, and I spoke about how to live with chronic illness and what my journey has taught me. That was three years ago and a lot has changed. I finally graduated from college with a bachelor’s degree in Human Development and a minor in Theatre Arts after more than 7 years as an undergraduate student. I got a job as an assistant preschool teacher in Newton, Mass and moved up there for the school year and will return in the fall for a second year at the same preschool. The Young People’s Theater program at the Art Center has grown and I teach three classes on two days a week and will be adding a fourth class this fall for preschoolers as well as occasional weekend workshops and extra classes. But while so much has changed, so much has also stayed the same and the past three years have been anything but easy with many ups and downs in my health and other areas of my life. And I have begun the process of going down the next path in my life and taking steps into the “real” world. While this process has been difficult and I still struggle with it on a daily basis, I feel I am finally beginning to step out and be independent. I may be doing this later than many people but I feel like I am finally finding my wings, spreading them wide, and learning how to fly.

This flying metaphor has a lot of meaning to me. The idea of flying has always felt like the ultimate freedom. Being able to just take off and soar through the sky, see the world from a different perspective, and feel the wind whipping against your skin and blowing in your hair sounds amazing. And this is a freedom I have longed for, not literally to fly but knowing that freedom of leaving the world behind and being liberated. I don’t think this is anything I necessarily thought about before I got sick when I was 15, but it certainly has all the more meaning having gone through so many years of being confined by my illnesses and conditions and, much of the time, being literally tied down to IV poles and pumps.

But the desire to fly has another, more silly and creative meaning to me. When I was probably 14 or 15 my older sister gave me the nickname Penguini. I remember clearly walking across the parking lot to our car after eating at Sam Diego’s in Plymouth for my sister’s birthday or some other event and I began walking like a penguin (don’t ask me why, just one of my silly moments). She called me Penguini and the name stuck. But it didn’t end at a nickname. I developed a whole story and persona of Penguini. And Penguini is a penguin who longs to fly. “As long as she could remember she always wanted to fly. She felt weighed down by gravity, by the land, by her solid bones. She envied the gulls and albatrosses that could spread their wings and fly high above the icy ground. To Penguini flying was freedom and she longed more than anything else to feel that freedom.” I have written the story of Penguini: The Penguin Who Longed to Fly and you can read it here.

I feel I have begun to take my own leaps and begin to learn how to test my wings and fly off on my own, but at the same time I feel hindered by the strings that connect me to the “medical” world and will not let me truly go off and soar by myself. This past year has been a test as to how well I can balance the two worlds I inhabit – the “real” world and the “medical” world, but don’t get me wrong, the “medical” world is very real, too. I have spent so much of my time over the past 11 years focusing on seeing doctors, figuring out what is wrong and how best to deal with or fix it, and generally delving deeper and deeper into the medical world.

For those of you who may not know that much about my whole medical story, when I was 15 I got sick and was diagnosed that year with Lyme disease, a diagnosis that later became chronic Lyme disease as we realized the full nature of my case. It probably dates back to when I was about 8 – 18 years ago which just seems crazy to think about. Over the few years following my diagnosis, I went on treatment, got a little better, went off treatment, got worse, then went to doctor after doctor with treatment after treatment and saw little improvement until I began IV antibiotics in 2002 when I was 20. That helped a lot and I was slowly rejoining the world but when the treatment stopped (due to my insurance stopping coverage of the IVs) I got worse again after 4 or 5 good months and the quest for a new treatment began again. Since 2004 I have had a port-a-cath in my chest and been on various IV treatments, including antibiotics, hydration, and nutrition. I’m often seen carrying around a small backpack of some sort which contains a small portable pump (an amazing invention) and the bag of IV medication and tubing that’s attached to my IV line.

I also have diagnosis of Dysuatonomia or autonomic nervous system dysfunction which affects many systems of my body; Gastroparesis which literally translates to “paralyzed stomach” and affects my ability to eat; and Reactive Hypoglycemia and Hashimoto’s Thyroiditis, neither of which have much impact on my daily life. We suspect there may be other conditions going on but I have yet to receive any other diagnosis. Some people might say dealing with all of this and struggling so much to try to lead a “normal” life isn’t fair. But I don’t think “fairness” has anything to do with it. There are difficulties in everyone’s lives. And it’s pointless to try to compare one struggle against another, to measure one person’s obstacles with someone else’s. Sure, there are times when everything is too much, but doesn’t everyone have those moments?

So after 11 years of dealing with these illnesses and conditions to one extent or another, I finally felt well and stable enough to try to take the leap and get a job, an apartment, and go out on my own to see if I could do it. This past year I did just that and I survived! I was still on a lot of medications and IV treatments to keep me stable, but I made it through the year and proved that I am capable of it. But suddenly jumping into the “real” world wasn’t easy. Rejoining society is like moving to a new country. The disorientation of moving into a new society, not speaking the language, not understanding the cultural priorities after having such different concerns for such a long time, and not having them understand you is quite a challenge. But it goes even further than that. Getting sick in a lot of ways is like going to a foreign country where you have to learn a new language with all the medical jargon, you have to learn new priorities and adjust to a new lifestyle. And after a while you get used to it. And then you decide to move to another new, foreign, more or less unknown country that you have seen from a distance but never truly existed in. The transition is difficult.

I was more or less up front about my health issues with the co-directors of the preschool and with the other teachers in my classroom and they were pretty understanding, but not the kind of understanding I have from friends in the “medical” world. I feel awkward in the “real” world. I am a stranger in that world, a place I have seen going on around me but that I have felt is largely spinning by without me. And since I was relatively young when I first got sick and my world changed, it wasn’t that I was re-learning how to be in the world, I was learning for the first time. I felt that I was suddenly thrust into the new, strange, but exciting world and having to navigate my way without feeling like I knew what I was doing. I was consciously trying not to make my medical stuff central to the relationships I was forming with people at the preschool, I made a very conscious choice to not go into work hooked up to my tubing and backpack until it became necessary at the end of the year (and it really wasn’t a big deal – 4- and 5-year olds are so accepting!). I was trying desperately to exist in the “real” world, keep the foot I had in the “medical” world balanced, and get out there and do all the things I hadn’t been able to do for such a long time.

And this is where a dilemma lies. When I’m doing well, I naturally want to run out and do things because I have been unable to do things for such a long time. I want to make up for all that lost time. And in some ways I was trying to make up for not having been a productive member of society for such a long time. I needed to run around like crazy, working all kinds of jobs (all of which I did enjoy), sometimes neglecting my health, to help myself feel a part of the world and to help myself feel worthy after so many years of feeling like I could do nothing. So I ran around, I taught preschool, I drove down here to Marion from Newton to teach theater classes, I taught swimming lessons at the Y in Needham, and I left myself little time for actually resting and taking care of myself. In a nutshell, I overdid it and went too far in the direction of trying so hard to be a part of the “real” world. And it didn’t bring the kind of connection and joy that I wanted to get out of it, it just made me exhausted and I was constantly sick with one thing or another (a hazard of working with young kids).

In a lot of ways it's scarier to be somewhat well than to be sicker and more debilitated. When you're sick and can't do much, you can expect to wake up and feel badly, you don't expect to suddenly be able to do a lot and, while crashing is still scary, it's a little easier anticipated and handled because there isn't as much to lose. But when you're relatively well and able to be working and fitting in fun things from time to time, crashes are so much harder to deal with because there's a lot farther to fall and much more at stake. If I crash now and I crash hard, how would I manage to continue working? Would I have to take time off of work? Would I be able to manage financially? What would happen to the independence I've finally gained after such a long time of being so dependent on my parents and other people in so many ways? So many things to lose.

In June I began a long and scary ordeal showing me how quickly things can change. Upon switching the antibiotic treatment I was on, I developed high fevers. The two things were apparently unrelated but happened during the same weekend so it complicated the puzzle. I don’t get fevers and these were scary high. I waited to call my PCP thinking it was just a virus, the flu, something that would pass on its own. But when the fevers dissipated only to return again just as high as before I realized something else was going on. And of course, always the puzzle, we couldn’t really figure out what was causing them. Our fear was that my port, my permanent IV line, which serves as a lifeline for me, was infected but thankfully that didn’t seem to be the case. We identified 2 infections but treatment for them brought no relief from the fevers. I am still dealing with them, nearly two months after their onset, and they are taking their toll. About every 2-3 days, often at night, I will feel the telltale signs of a fever coming on and brace myself as I see my temperature climb to nearly 104* and then slowly come down. The whole thing lasts 4-5 hours and then I’m alright, although exhausted and obviously not feeling at my best. We believe we’ve figured out what is causing them, a tick borne disease called Babesiosis that is often transmitted along with Lyme disease. It is related to malaria and is an infection I’ve been treated for many times in the past, but never with symptoms this severe. So, I will begin another course of treatment this week and hope and pray that it brings an end to the draining fevers.

This ordeal brought up the very real fear that lies close below the surface of my mind – have I come this far only to fall back down again? I know how far I have to fall now, how much there is to be lost. Those memories of my lowest times – when people (perhaps myself included) just thought I would fade away entirely. Those scary times when my confusing health picture baffled all my doctors (although I continue to do this, just in less scary ways). I know what it’s like to be there and I know how long it’s taken to come back from that.

Through the past few years I have had to begin defining myself in a different way, pushing aside the definitions that have been at the forefront for such a long time. When my life seemed to completely revolve around doctor’s appointments, medications and infusions, and spending time resting in bed or generally being incapacitated by my illnesses and conditions, I was largely defined by my existence in the medical world. Now as I begin to step out into the “real” world, I have begun to define myself in other ways. But I can never leave behind the definitions I’ve had for such a long time and I can never, nor would I ever want to, wash away the past. I have come to where I am largely because of what I have been through. But trying to create these new definitions of myself brings with it some problems. I find myself trying to push aside my role in the medical world so I can try to exist entirely in the “real” world, but this is to the detriment of myself and my health. I cannot deny the fact that I still must exist within the medical world, rather I must find the balance between the two, which is a difficult thing to do.

I love that I’m able to have this existence in the “real” world – to have a job and an apartment and be out there doing all these things that for such a long time I had seen as impossible. But I also yearn for the understanding that can only come from people who have been through the things I’ve been through. I have friends in the “real” world and they are great, supportive, understanding, but they know very little of the whole story because we simply do not talk a lot about it. Those friendships are in the “real” world and we (or maybe I) try to keep the medical interference to a minimum. But then I have friendships in the “medical” world that offer the kind of understanding and support that just cannot be found anywhere else. I have friends who have the same set-up with the backpacks and portable pumps, I have friends who understand the need to rest and how difficult it can be to feel so alone, I have friends who I feel so comfortable with I could share just about anything. These friendships run deep and I have tried so hard over the past year to keep them alive because I have been the person left behind by another who gets well and moves on with her life and I never want to do that to any of my friends. It’s difficult, but I try, and those friendships are so meaningful I don’t think they will ever truly go away.

So, how am I doing trying to reintegrate into society? I’d say I’m doing alright but I’m realizing just how many obstacles there are to face and overcome. But regardless of how difficult it is, I’m doing it. That is perhaps the most important thing to me – I’m managing to work and support myself. I worry that things will change so I’m trying to get the most out of these experiences. But at the same time I’m trying desperately to plan a future without having the “medical” world at the forefront. Right now I am really hoping to be able to move out to Oregon in a year or so. My sister and brother-in-law live there, I love the area, and I want to go to grad school somewhere on the west coast. But with these plans I’m facing the question of whether I will be well enough to actually do it, to leave my doctors behind here (perhaps staying connected through phone calls and visits every 4-6 months), to set out on my own even more than I’ve already done. But my view on it right now is that all I can do is try it. I can’t wait around, hesitate, worry that I might make a wrong decision, because there are no right and wrong decisions, there are just decisions. If I take the plunge and it doesn’t work out, it doesn’t work out and I make another decision. "Sometimes you just have to take the leap and build your wings on the way down" -Kobi Yamada. Or, As Elphaba in Wicked says:

I'm through accepting limits
'Cuz someone says they're so
Some things I cannot change
But till I try, I'll never know!

So I have to trust the instincts I have and take the leaps when I can, but at the same time I have to remember that my body isn’t necessarily up for all the things I want to do. It’s hard to hold back, but I have to try to keep that balance in order to keep myself stable enough to do the things I love to do. And I have to trust and have faith that things will be okay, no matter what happens, no matter where I end up going, no matter what decisions I make, it will be okay in the end. Because, “Everything will be okay in the end. If it’s not okay, then it’s not the end.” I will continue to build my new identity and strive for a good balance between the two worlds I live in. It may be a struggle, but I’d rather be struggling to fly than standing on the ground watching all the birds above me.

2008-07-23T18:43:00.001-05:00

Penguini: The Penguin Who Longed to Fly

Penguini was a penguin. Her real name was Penelope Penguin but when she was very young she had gotten the nickname Penguini from her sister, Pamela, because she loved to try out magic tricks. Penguini, Pamela, and their parents, Paula and Pablo Penguin, lived in a cozy igloo in the chilly Antarctic ice near the South Pole. Penguini loved to play with her sister, she loved to go sliding around on the snow banks and ice flows, she loved going to school and learning all about the famous penguins from history, especially Tux, the penguin famous for creating Linux, although silly humans thought Tux was just a cute spokespenguin to help sell their product and he didn’t get any of the credit for actually creating the program. And of course she loved magic. She could spend hours and hours in the library reading about Houdini and David Copperfield. Of course Houdini was her favorite magician, seeing as her nickname was similar to his name (and probably the inspiration Pamela had in mind when giving her the nickname).

Penguini learned card tricks, how to pull a penguin chick out of a hat (after all, there really aren’t any bunny rabbits in Antarctica!), how to pull a bouquet of flowers out of thin air, and how to make food disappear quickly, although that last one may not have been magic so much as an empty stomach. But the one magical trick Penguini wanted to learn most of all was one she couldn’t seem to manage. Penguini longed to fly. Her parents always said that when she was just a little chick she would flap her wings as fast as she could as though she was trying with all her might to take off into the air. As long as she could remember she always wanted to fly. She felt weighed down by gravity, by the land, by her solid bones. She envied the gulls and albatrosses that could spread their wings and fly high above the icy ground. To Penguini flying was freedom and she longed more than anything else to feel that freedom.

She had tried to tell her friends and her parents about her secret desire but they all just laughed at her. “Penguins? Fly? That’s the silliest thing I’ve ever heard,” said Paula, one of the more popular girls at school. “Just face it, Penguini, you’ll never be able to fly,” Percy, a teammate of Penguini’s on the swim team, told her. “We’re just not built that way so you should just get used to it.” But despite all the laughing and jokes at her expense, Penguini still held on to her dream. And she was determined to make it come true one day. She wasn’t sure how, but she felt it right down to her heavy, solid bones that one day she would take off into the air and find herself soaring through the sky.

Every night she would fly in her dreams. She would soar high up to the clouds, feel the wind whipping at her face and tickling her flippers, and she could feel that freedom. The world wouldn’t weigh her down anymore and she could leave all her worries and troubles behind and just be alone with the clouds and the sunshine and her thoughts. But every morning she would awake and be reminded that she was only flying in her dreams and her heart would sink a little bit. Her friends and family loved her, she knew that, but she also knew they just couldn’t understand her deepest desire. They were all content to waddle about on land, slide along the snow, and swim in the cold water. Her swim team told her that she should think of swimming as her form of flying. “After all, we do use our wings like the air birds do while we’re under water. Can’t you feel free doing that?” Percy asked her one day at swim practice. “It’s just not the same,” Penguini responded, and she dove into the water to swim her 500 meter freestyle.

Time went by and Penguini grew up but she never abandoned her dream of flying. And then came the day that changed her life. She was out for a long waddle along the shore which she did quite often as a way to get away from the crowd and have time along with her thoughts, when she decided to stop and rest for a while.

She began thinking about things – about her life, about her dreams, about the goals she had set for herself, and about what she really wanted to do with her life. She was deep in her thoughts, very serious thoughts for a young(ish) penguin (she was only 5…that’s about 25 in people years). She thought about all the criticism her friends and family have given to her about her dream, how they had laughed at it, and how she had stopped telling people about it because she didn’t want people to mock the dream that was so important to her. She always kept hope alive that one day she would realize her dream and be able to soar through the sky. And as she sat there deep in thought looking up at the clouds passing by something came over her. She came to the realization that she shouldn’t feel held down by her limitations as a penguin, a “flightless bird” as they’re are often referred to, but learn to let her heart and spirit carry her wherever she wanted to be.

On that sunny afternoon on the edge of the ice and snow, Penguini’s heart felt light and she felt as though a weight was lifted from her shoulders. She felt a sense of freedom come over her. And she knew that she needed to break free from her life for a while to go in search of her true happiness. She realized that the expectations that other people had for her had a big part in weighing her down, not gravity and her heavy, solid bones that she blamed for her inability to fly. Penguini was scared to go off on her own but she knew that if she didn’t she would always be living the life that everyone else wanted for her – to remain in the same village, become a responsible adult, make other people happy – instead of living the life that she didn’t even realize she wanted yet.

When she got home, Penguini began an internet search for a place to go and work on herself far away from everyone who knew her and had these expectations for her life. She found the perfect place – Penguin’s Rest, a Buddhist retreat center on Roosevelt Island out on the Ross Ice Shelf. It was set away from the rest of the penguin villages and provided a place for meditation, contemplation, and awakening which seemed to be exactly what Penguini needed. She worked hard to save up the money for a month-long stay at Penguin’s Rest and a few months later she packed her bags, said goodbye to her friends and family, and set off on the journey for Roosevelt Island.

Penguin’s Rest was the perfect place for Penguini. She got up early in the morning and spent time meditating in her room, then had a wonderfully cooked but simple vegetarian breakfast (who knew penguins liked things other than fish!) with the other visitors at the retreat center, and spent most of the rest of the day in meditation out on the ice flows, in the meditation studio on the top floor of the center, or in group workshops. She was amazed at how much she grew and the rising sense of freedom she found by exploring her own path to happiness without trying to make other people happy.

She learned how to sit in stillness and focus inwards while still looking outwards at the world. She meditated, prayed, practiced yoga, and learned more about herself than she even knew there was to learn! Her life changed. And when it came time to leave Penguin’s Rest and return home she knew what she wanted to do with her life. She didn’t want to stay in her village but she wanted to get out into the world, explore, meet other kinds of penguins, and see what lay beyond the horizon. The world was open wide to her and she felt like she could reinvent herself into whatever she wanted. And her dream of someday flying was still there but now she felt like it was all the more real in her everyday life. As she went about her day-to-day activities with intention, she felt her spirit soaring. As she journeyed far to the Galapagos Islands and the coast of Australia she felt her body become lighter and lighter. It was as though the weight of the world had been lifted from her and she felt freer than she ever had in her short lifetime.

And one day, without even realizing it, she began to float above the ground. Just a few inches; just enough so that she felt the wind tickling her flippers; just enough so that she felt weightless. Penguini looked down at the ground to discover her flippers had left the snow below her. She smiled from ear to ear and her heart swelled. It was as though she had created a special kind of magic by following her own dreams. She no longer had to go to sleep to dream of flying; she could feel it in her waking hours.

Over time she learned to float farther and farther off the ground – some may say she was just levitating, a trick that she had learned from one of her magic books, but she knew that this was different. She continued her traveling, learning so much from the other parts of the world and from the penguins and other animals she met. She showed them all how she could fly and told them of her dreams since she was a chick of someday taking off from the ground to be among the clouds. No one laughed at her anymore. No one scoffed at her dream because they could see that it was no longer just a dream. She had realized her dreams by finding the courage to go off in search of herself. And, in this discovery, she had found the freedom to no longer let gravity, and other people’s expectations for her life, hold her down.

Is it worth it?

2008-04-15T20:40:00.005-05:00

It has been an extremely long time since I've posted anything on here. Mainly it's been because I just haven't had the time and energy to be doing much in the way of creative writing. It's there inside me wanting to come out, but when I'm spending all of my time and energy on work, and driving to teach my theater classes, and running around trying to gather costumes and props, and teaching swimming lessons now, and trying to fit in meals and sleep and medications and infusions it's pretty hard to sit down and let all these words and thoughts come out onto the computer screen (or even a piece of paper if I'm not near my computer). I will often start writing something on a piece of paper, often scrap paper that I happen to have with me at the time, but it never makes it to its conclusion. But tonight I'm feeling contemplative. And I have probably another half hour left of my evening doxycycline infusion which means I can't go to bed yet anyway so I'll just start writing and see where I end up.

Lately a lot of people have been telling me they're worried that I'm doing too much. And frankly I'm worried about the same thing even if I don't let on to it very often. This is my typical weekly schedule right now:

Monday

8:00am-3:00pm Preschool
3:45pm-7:30pm Teach Swimming Lessons

Tuesday

8:30am-1:00pm Preschool
4:00-6:00pm Advanced Theater Class
7:00-8:30pm Choir Rehearsal

Wednesday

8:00am-3:00pm Preschool

Thursday

8:30am-1:00pm Preschool
3:30-6:00pm Beginner and Intermediate Theater Classes

Friday

8:00am-1:00pm Preschool (followed by about an hour of cleaning)
sometimes an appointment around 2pm
4:30-6:00pm Teach Swimming Lessons

Saturday

Often a theater rehearsal from 2:00-4:00pm or 4:00-6:00pm

Sunday

10:30am Church (sometimes choir rehearsal at 9:30am)
4:00-6:00pm Annie Rehearsal

So that's my "typical" week nowadays. It's a lot. Each week I feel like I'm putting out more energy than I'm generating and I'm slowly losing my reserve that I usually have to help push through what I need to do. I am flirting with the dangerous ledge that I seem to try to ignore until I'm right there on the edge looking down just before I slide off and crash hard. I hate crashing because it's so scary and it can get so out of control so quickly. In the past I have had many degrees of crashes ranging from mini-crashes to the mega crashes that are really scary and not only scare me but freak out most of the other people around me. Right now I'm probably on the verge of a medium-sized crash but so often a little crash can snowball into something much bigger. And before you know it you're tumbling down the mountainside and just hoping there will be something soft at the bottom to break your fall.

In a lot of ways it's scarier to be somewhat well (by which I mean relatively functional in the "real world" and straddling the "real" and "medical" worlds) than to be sicker and more debilitated. When you're sick and can't do much, you can expect to wake up and feel badly, you don't expect to suddenly be able to do a lot and, while crashing is still scary, it's a little easier anticipated and handled because there isn't as much to lose. But when you're relatively well and able to be working and fitting in fun things from time to time, crashes are so much harder to deal with because there's a lot farther to fall and much more at stake. If I crash now and I crash hard, how would I manage to continue working? Would I have to take time off of work? Would I be able to manage financially? What would happen to the independence I've finally gained after such a long time of being so dependent on my parents and other people in so many ways? So many things to lose. So freaking scary.

There's a song by Lori McKenna called Mr. Sunshine that says, "You scare me more than the hard times. I know they're comin' around again. You scare me more than the grey skies. Good morning Mr. Sunshine." It's true. When you're in that "grey sky" time you know to expect the grey skies. But when you're in the sunshine, it's almost like you're always waiting for the other shoe to drop. Or else you're living completely in the sunshine and when the grey skies move in you're taken totally off guard. Neither one is pleasant.

Anyway, I'm doing a lot is what I'm trying to say I guess. And I'm scared of that crash. I keep telling myself, "Just make it through this week. Next week is school vacation, you can rest then." But there's a voice inside me saying, "Just make it through the week? How am I supposed to do that?" I honestly don't know how much I have left in my reserve of energy. Somehow I manage to find that little bit of energy I need to get through what I have to get through, much to the surprise of me and everyone around me. But my body is giving me signs that I'm just doing too much. To an extent I can ignore some of the signs. I can deny that I'm completely and utterly exhausted except when I lie down and can't imagine moving a single muscle because of how much energy it will take. I can shrug off the increased headaches and just pretend they're worse because of the weather. I can ignore a lot of things, perhaps that's my stubborn nature coming out, but it's really hard to deny lab results that are there in black and white on paper. Lately they haven't been terrible but my liver is obviously starting to say it's had enough of something. I'm just keeping my fingers crossed that it won't turn into anything worse. When I draw my labs each week I will the numbers to go down (at least the liver numbers, wouldn't want my white or red cells to go down much).

Sometimes I honestly wonder if it's worth the sometimes seemingly impossible balancing act to be doing all that I'm doing. If I push myself to do too much because I'm feeling better but it ultimately pushes me into a crash that takes me a long time to pull myself out of, is it worth it? But if I just take it easy all the time and don't really enjoy the time that I am feeling better, is that worth it? It's a double-edged sword I guess.

Alright, that's enough pondering for tonight. I need to get myself to bed so I can hopefully get 8 hours of sleep tonight. Just three more days this week and then I'll officially be on vacation! And perhaps I can get things more in balance then.

Yours,
Penguini

And some other Lyme stories

2007-11-11T09:59:00.000-05:00

On the theme of Lyme stories, here is a three part series from a news station in Virginia that was very well done. Take a look when you have a few minutes.

The Lyme Controversy - Part 1
The Lyme Controversy - Part 2
The Lyme Controversy - Part 3

Yours,
Penguini

Lyme Disease Video

2007-11-11T09:56:00.000-05:00

This is a YouTube video that someone (I'm not sure who) put together about the realities of Lyme disease. Take a few minutes to watch it as it's quite well done.

Yours,
Penguini

What is "normal"?

2007-11-04T09:58:00.000-05:00

Normal. Normalcy. Normality. However you want to say it, there is a certain connotation behind it. But what is normal? Is there one person somewhere who is considered perfectly “normal” and the rest of us are just measured against them? Or is it about taking the middle slice through a population and coming up with the average and considering that “normal”. Like when it comes to a “normal” body temperature. How many people really have a temperature of 98.6° all the time? I know there is naturally variation among people, but someone draws the “normal” line somewhere and says that is what we should all strive for. Personally, when my temperature gets to the “normal” 98.6°, it’s time for me to keep an eye on it and worry if it climbs higher since my “normal” temperature is about a degree below that.

And when it comes to other “normal” things…well, who determines what is considered normal and what is considered abnormal? When it comes down to it, it’s all relative. What is “normal” for me would probably be seen as strange, weird, bizarre, or somehow abnormal in your eyes. For me, normalcy involves being in the medical world and having that on my mind pretty much 24/7 because pills have to be swallowed at certain times of the day, IV infusions have to be scheduled and hooked up on time, shipments of supplies need to be timed so I don’t run out of supplies, refills on medications have to be called in and picked up on time, doctor’s appointments have to be scheduled and gotten to, and so many other medical things that I have to be aware of. And that doesn’t even go into the constant reminders with the symptoms that are there all the time – the fatigue, the joint and muscle pain, the gastrointestinal pain and nausea, the brain fog, and everything else that goes along with these chronic illnesses that I carry around with me all the time.

I am sure that for most of you, “normal” doesn’t include carrying around a backpack with portable pumps in them and have tubing coming out from under your shirt and be out and about in the world (or not) while infusing various medications and hydration. And because this isn’t your “normal”, you may be confused and taken aback when you see me (or someone else like me) walking around in the grocery store with this backpack set-up. When I go out with my little backpack, of which I have a very large collection (I just took a count and I have 12 in all but I don’t use all of them, I have a few that are my favorites and the rest are around for other occasions and just to have options), I feel like I get weird looks from people who just don’t know what it’s all for. I’m somewhat self-conscious about it all, but I’ve learned to be grateful for the fact that I can be out at the grocery store while infusing because without the backpack, pumps, and medications I don’t think I’d be able to be doing any of that. I would be stuck at home hooked up to an IV pole or, worse yet, in bed without the precious medications that have kept me alive for the past 10 years (well, not 10 years of IVs, it’s only been just over 5 years since the beginning of my first round of IVs). Instead of being totally embarrassed by the loud sounds my pumps make and having people ask about the sound, I am so grateful to have the pumps in the first place because I know how much more difficult my life would be without them.

My idea of what is “normal” is so different from what the…well, “normal” view of “normal” probably is. But is there really a normal view of normal or is that an oxymoron? If there really isn’t just one “normal”, then wouldn’t we each have our own unique idea of what “normal” is? For you, normal may be caring for an ill child, an aging parent or grandparent, having a house full of pets, having to work 2 or 3 jobs to make ends meet, raising children on your own, or learning to deal with a difficult prognosis of this or that disease. So who has a right to say that something is normal or abnormal?

Granted, a view of what is normal has a place like in lab work. It’s helpful in that instance to have parameters of normal defined so that you know if things aren’t right for one reason or another and you can try to fix them. But even there, what’s normal for one person isn’t necessarily normal for another person. For example, my alkaline phosphatase (a liver function) is chronically low and we’re not sure why but perhaps that’s what my “normal” is right now and maybe it doesn’t really matter that it’s low, maybe it does. We don’t know everything there is to know about the human body. And with things like blood pressure and cholesterol constantly having their “normal” numbers lowered and lowered, how can someone possibly seek to be within the parameters of “normal” that are being redefined on a regular basis? I know that my blood pressure is good when it’s 120/80 but that is now considered prehypertension whereas it used to be the normal value that everyone should strive for. When my blood pressure goes down to, say 100/65, that’s not good for me and usually it means I’m not feeling great. But the problem is, many doctors (and nurses and just regular people) don’t take the time to realize that one person’s “normal” is probably different than another person’s “normal”. So if I went to a new doctor’s office and they took my temperature and it was 99.0°, they probably wouldn’t think much of it but I would know that it’s bordering on a real fever.

I think I’ve strayed from what I was trying to focus on. It’s not about those medical values of blood tests, temperature, blood pressure, etc. It’s about what we consider “normal” in our day to day lives and how they are so different from one person to the next. It’s hard to get weird looks while at a store with my little backpack and tubing coming out from underneath my shirt. It’s hard to get funny looks when I have to park in a handicapped space because I don’t look handicapped. But the truth of the matter is that no one knows what is going on within anyone else. There’s a great quote by Miller Williams that says, "Have compassion for everyone you meet, even if they don't want it. What appears bad manners, an ill temper or cynicism is always a sign of things no ears have heard, no eyes have seen. You do not know what wars are going on down there where the spirit meets the bone." And along with that, who are we to say that our lives are more “normal” than someone else’s? Normalcy is all relative and looking down on someone else for their apparent abnormality and seeing that as a problem just hurts ourselves because we are developing assumptions that shut us off to the world.

Seeing the world narrowly in any way cuts us off to experiences that could be valuable and possibly life changing. Just because something is different, doesn’t mean it has to be scary.

Yours,
Penguini

The Great American Adventure with a Twist...of Lyme

2007-10-24T18:40:00.000-05:00

I'm preparing myself to do something big but I don't think I know just how big it's going to end up being. I'm planning a road trip which in and of itself is kind of a big thing, but it takes on a whole new meaning when put in the context of my life. I'm viewing this journey across the country as my way of jumping into life, seeing as much of the country as I can, soaking in everything, and breaking free of the shackles that chronic illness has imposed on me for such a long time. It will be my journey towards taking flight into my life. Not really a life "after" Lyme but a life of living in balance with it, not letting it determine my every move but in no way able to simply put it behind me because it is still so present in my everyday life.

And I think it is fitting that I will be beginning the planning of this trip as I approach the decade anniversary of my diagnosis with Lyme disease. On December 28, 1997 (I'm 99% sure that's the specific date) I was officially diagnosed with Lyme disease. I was 15-years-old, a homeschooled sophomore in high school, and I had spent the preceding 3 months leading up to my diagnosis mostly bedridden with debilitating fatigue and a never-ending migraine as well as various other symptoms. And I had spent years prior to that with random symptoms that didn't seem to be associated with anything, that just simply seemed to pop up here and there and disappear as mysteriously as they appeared. And I have spent the almost ten years since then on the roller coaster ride that is chronic illness. I don’t know how many days I've spent traveling to doctor's appointments, how many hours I've spent hooked up to IVs, how many tests I've had done, how many vials of blood I've had taken, how many doctors I've seen in total, and how many various diagnosis (both correct and incorrect) I've been given. But none of those specifics really matter.

What matters is that I am here, still here and living my life in ways that I didn't really think was possible even just a year ago. There were times in the past ten years where it seemed I would be stuck in that dark hell forever, that I would never find the right doctor, get the right medications, get those right medications covered by insurance so I could actually get them, and slowly begin to climb out of that hell. And many times when it seemed I was finally finding my way upwards towards improvement only to slip or stumble and slide back down. It really is a slippery slope and there are no guarantees that recovery will last and really no telling when a downward slide will happen or what might bring it on. Now I have climbed out enough so that I can kind of straddle the medical world and the "real" world – that illusive world where people get up in the morning and go to work; where people are able to pay for their own apartment rent, food, gas, and other necessities with minimal help from others; that world where doctor's appointments are scheduled around life rather than the other way around. But I never forget what a slippery slope it is and find myself terrified of the thought of a downward slide but at the same time afraid to get too used to this more "normal" life because it feels like it can't last forever.

I still have these daily reminders of being sick. I'm hooked up to IVs many hours of the day, I swallow dozens of pills a day, I have doctor's appointments at least every other week and visit my PCP's office weekly for various treatments, and I always have this voice in my head that reminds me to take it easy and figure out ways to conserve energy and do the best I can for myself. But I am here. That must be a testament to something. Because there were times when I really didn't know what would happen and just making it through a day was an accomplishment. Well, now just making it through a day is an accomplishment but not just because I continue breathing in and out and can eat enough to stay alive but because I survive 21 active 4-year-olds, teach theater classes, stay active in my church through choir and classes, am literally days from officially graduating from college (a long 7+ year process), and I am managing it all the best I can.

So, back to what this was supposed to be about, this road trip I am planning. It started out as simply a trip to go see the country a little more and make it out to visit my sister and brother-in-law during my month off of work in June. I was making a mental list of the places I wanted to stop and see – make a stop in Tennessee to visit friends, see Sedona in Arizona, see the other big sights of the southwest - the Grand Canyon, the Hoover Dam (which has some meaning going back to high school geometry that perhaps only my family knows about but has a different meaning now – maybe I'll write about that sometime soon) – and a stop at the Johnny Appleseed Restaurant in Virginia (kind of a family tradition). But now the trip is becoming more than just a trip, more than just packing up a car and going to see the country. This is becoming a statement about where my life is going, that I am going...somewhere. I suppose it's truly "A Journey to Somewhere" (if that makes no sense to you, look up at the top of the page). And it has the potential to turn into something else, something that could potentially benefit the Lyme community (or at least specific organizations).

My aunt and uncle have helped me think bigger in terms of this trip. Not just think of it as a typical American road trip but think of it as a real accomplishment and adventure. Something I can put a lot of spirit and soul into and really dream big as to what I want it to become. I'm still trying to think up a name for the trip. (Lyme on the Road? Lyme Across the Country? Lyme on Wheels? Lyme Hits the Road? Lots of ideas there.) But the name doesn't matter right now, and even if I don't have a name that's fine. The idea my uncle had was to try to turn this into a fundraising opportunity for a Lyme organization – get sponsors, get donations, have people be able to track my progress and experience my adventures in some way. And the more I think about this the more I love the idea, the more I want this to become a big thing and to have it be about more than just me seeing the country. There are so many other Lyme patients who are not able to do this kind of trip for one reason or another – physical constraints, financial constraints, etc. – and I would love for my trip to be a way for them (and maybe this applies to you) to see the country, to experience it with me.

So there it is, a big adventure in the works and something that could be...transformational. It's so open to possibilities and I can’t wait to get started planning it!

Yours,
Penguini

What do I want with my life?

2007-10-06T13:44:00.000-05:00

What do I want with my life? A big question and one that certainly doesn’t have a simple answer. My mind is generally very active, there are always things flying around in it and I’m constantly thinking of things I should write about. Because for me thoughts don’t continue through to their end until unless I’m writing the words down because my busy head will without a doubt find something to throw right in the middle of the thought line to throw me off onto some other topic and forget about what I was trying to think through. And of course writing things down makes it more real, makes it last longer and allows me to really think and go back over it and think about it some more.

So what do I want with my life? I guess the easy answer, if there is one, is that I want love and lots of laughter. I want it to have meaning and I want to know that meaning deep down inside, feel it down to my toes, love what I do and do what I love, have passion for something big, follow my dreams, and be surrounded by people who know me, love me, and have their own passions. Life isn’t easy and I have no expectations of anything being easy. Maybe I have been through more than I ought to have to go through. But who are we to question whose experiences are fairer? How can we possibly say that one person’s life is more unfair than someone else’s life? But now I’m getting off topic here.

What do I want with my life? I want to write. I want to write freely, with pure abandon and no fear of other people reading what I write because it might not be good enough. I want people to read what I write because maybe there’s something in the words I put down. Maybe there isn’t. But that doesn’t matter. When I write my voice grows stronger and I find myself a little bit more with every letter, word, sentence, paragraph, page. I want to write a book about my life. Maybe it’s not a book anyone else will want to read, but it’s something I feel deep down that I must do. It’s not a question of if I want to do it or not, it’s just something that is essential to my soul.

What do I want with my life? I want more smiles than tears. But if I can’t have more smiles than tears, I want the tears to taste sweet on my lips and relieve whatever pain has caused them. And sometimes the best times are filled with tears that lead to laughter or the other way around. Sometimes things are so beautiful that they make you cry. And sometimes they are so awful that you can’t do anything else but laugh. The laughter is so important. Even in the darkest times, laughter can bring a spark that has the ability to light up the whole room and let you forget about all the awful things for a while.

What do I want with my life? I want love. I know I said that already, but it’s worth repeating because what can be more wonderful than love? I want to be in love but not make that love the center of my life, but rather the grounding that helps me find myself when I feel lost. I want a love that will make me feel safe and secure, accepted, good enough just as I am with no pressure to change to something else unless that is where my life is taking me.

What do I want with my life? I could venture off into the unrealistic, the dreams rather than the real-life hopes. And why not go off there, this is my writing from my head so I can go wherever I want I guess. I want to be well. I want to be able to throw away all the pills and IVs and make this lump of a port-a-cath in my chest disappear. I want to be able to jump in a lake without worrying about IV line infections. I want to be free to take a shower anytime I feel like it without careful planning around IV schedules. I want to spend my weekends out enjoying the world instead of recovering from the stress and strain of the week. I want to be able to put food in my mouth without worrying about the pain and nausea that I know will come all too soon. I want to throw my IV pole out the window and fill my room up with bookshelves full of great literature that I actually have a hope of reading (and understanding) instead of having organizers lining the walls with bags of IV medications, needles, and all the other supplies that have become my baggage. I want all of this, but I don’t expect it to happen so I will only write it here for the sake of writing it. And who knows, maybe some of it will be true…someday.

What do I want with my life? I want to sing loud and clear and have my voice carry to whoever needs to hear it. I want to feel the notes rising up from my toes and stream out of my throat with the kind of purity that only happens on rare occasions. I want to feel a connection with the divine in so many ways – through song, through writing, through nature. I want to watch the waves crash on the shore and watch so many sunsets that it’s all I can see when I close my eyes. I want to sit by the ocean and feel a part of everything, even if it’s just to feel like a speck in the universe. Even a speck is part of everything. I want to watch the stars come out after the sun sets and hear anything they might have to say to me. I want to look for fairies and feel angels around me.

What do I want with my life? I don’t know if any of this answers that question or just raises more questions. It’s such a jumble of everything that I can never know if it makes much sense at all but it’s there, it’s written down so that maybe my head can think of it as done and make room for more, different thoughts. Or maybe this is just the tip of the iceberg. Maybe this is nothing compared to all that is within me. I don’t know, and maybe I’ll never know for sure. But maybe this raises the question of what YOU want with your life? Are you doing what you want to be doing? And if not, why aren’t you? There may be a lot of time left to do all the things you want to do, but what if there isn’t? What if your time is more finite than you think it is and you are spending your time putting things off until tomorrow, or next month, or next year? Grab the moment and do what you feel you need to do. And always remember that sometimes the thing you need to do and the thing you think you want to do aren’t the same thing.

Yours,
Penguini

Pretty Upset - Quizno's Commercial

2007-10-05T16:51:00.000-05:00

Okay, this may end up being a little ranty but there is just something I need to blog about in a little different way than I usually do (which is more creative writing than ranting and "normal" blogging). Have any of you seen the new Quizno's commercial for their chicken carbonara sandwich? The one that has the guy hooked up to an IV because he's "done with eating, it's just not worth it anymore" and then he is talked into trying the new sandwich? If you haven't, you can see it here (you need quicktime or windows media player to view it). Now I have to say most people probably just watch the commercial, maybe chuckle at it, think the sandwich looks really good, and go on with their day. But from the first time I saw this commercial, I've been disgusted by it. And what has prompted me to write this is that I have found other people who are disgusted by it, too, and I needed to write/rant about it a little.

I hope all of you out there see the insensitivity of this commercial now that I have pointed it out. I find it very offensive and disrespectful as someone who relies on IV hydration, as someone who has many friends who are on or have been on TPN (IV nutrition) because they cannot eat enough or at all, as someone who knows how awful and difficult it is to deal with gastrointestinal problems that leave you facing the prospect of relying on IV nutrition (although I never did end up going on it, first because of insurance issues and then because I was able to get on treatment for my gastroparesis and started being able to eat a little better). How can a company think this is something that people should watch and laugh at? I know, there is insensitivity everywhere - TV, commercials, movies, music are disrespectful towards this group or that group all the time and no one says anything. But I think that's a big problem. If no one says anything, then people will continue to think it's okay to make a joke at the expense of one group or another.

So today I wrote to Quizno's (along with a lot of other people, as I found out from some of the groups I belong to) calling them on the commercial's insensitive nature. Who knows if anything will come of it, but maybe if enough people write to them something will happen. If you're so inclined, you can write something to them on their website here.

Okay, so maybe this isn't as ranty as I thought it was going to be. I just don't understand how people can take something as serious as needing IVs to survive and turn it into a joke and a way to sell sandwiches! I'm all for comedy in advertisements, but there is no need to go in this direction. There are plenty of funny commercials that don't poke fun in this kind of way. I know there is no one out there who wants to rely on IVs to survive, but it is a reality for too many people. If it were a matter of choosing to eat or not to eat...I don't even know how I want to finish that sentence, I really am just getting myself more upset about the whole thing when this was supposed to help relieve some of those feelings so I'll stop here. Please, if you have any inkling to write an e-mail or a letter to Quizno's, do it.

Oh, and I just realized that many of you may not know the details of my medical situation (although I'm sure most of you know enough for this post to make sense), here's the short version. I have chronic Lyme disease, dysautonomia, gastroparesis, and a handful of other medical conditions. Everything is probably as a result of the Lyme disease in one way or another. The dysautonomia causes my blood pressure to drop dangerously low and because medications failed to help I rely on daily IV hydration to keep it in check and keep me as stable as possible. I also receive IV vitamins and minerals in my hydration everyday and I infuse IV amino acids every night to help my overall nutritional status because I am malnourished from being unable to eat well because of the gastroparesis. I am unable to eat very much at a time, I rely on numerous medications multiple times a day to keep my stomach working as well as possible but I still experience symptoms, sometimes severe, including nausea, abdominal pain, severe reflux, and occasionally vomiting. I came close to being put on TPN (IV nutrition) in the winter/spring of 2006 when I had a severe gastrointestinal crash which made it impossible for me to eat more than a few hundred calories a day and I was rapidly losing weight. I have since gained back the weight and stabilized although I still am unable to get enough balanced nutrition in my diet and require a lot of help from IV medications, fluids, and oral medications and supplements. If you'd like to read more about my story and day-to-day medical life, feel free to visit my Caringbridge page.

Yours,
Penguini

Straddling Two Worlds

2007-08-31T12:10:00.000-05:00

There are times when I feel so separate from this place, these people, the world I see all around me. I feel like a floating soul. Not really of this world or in it. I feel different, somehow separated for reasons I can't quite think of. I feel like people look at me while I'm walking down the street or just sitting somewhere out of the way. What are they looking at? What do they see? Or is this staring just in my head? I feel like people look at me but at the same time I feel like no one sees me. I'm not memorable, nothing special, easy to overlook.

I want to leave a mark, but not leave behind damage. My baggage grows as I go through life and I don't want it to crush anything as I venture forward. If I am not really a part of this world, can I really leave a mark? It would probably be easier to go through life unseen by others, trying to be sure not to do anything to rock the boat. But in the end, easy doesn't really matter much if your life has no meaning.

It's the end of the summer, the end of vacation (well, almost) and I have these new adventures before me waiting so close to be started. And with all these changes I can't help but look behind me at what I've been through (non-medically speaking here) and think ahead to what kind of future I want to create for myself. I'm trying so hard not to really plan far in advance because things can change at the drop of a hat and expectations can unintentionally lead to closed doors. I don't want to close doors before I've even opened them. I don't want to be so fixated on a point somewhere in the future, a point I just want to get to, and miss out on things that cross my path.

I keep thinking ahead to what I'll do...then, after this or that is done. I'm thinking about next summer without really thinking about the whole school year between now and then. I'm trying to decide now where I want to live next year without knowing what may change, or how I may change, in the upcoming year. I feel like life is flying at me all of a sudden filled with opportunities and after living such a long time with so few options and choices, I want to have a chance to taste it all. I want to live where my heart is pulling me and I don't want to waste time between now and then. All these options, all these doors, and I end up either getting stuck on heading towards just one so fast that I lose sight of everything else or I stand there thinking about all the options so long that I never head towards any of them. And I don't know which way is better - gut-reaction or careful consideration. Both have their pros and cons, but if I spend time considering which way of deciding is better, I'll see even more time pass me by.

I guess the thing (or one of them anyway) is that I've spent such a long time on the sidelines of life and suddenly I'm entering the world, staring around at everything and not sure how to really join the "real" world but at the same time wanting to be a part of it all at once. But I still feel so much like a spectator, just an onlooker rather than an active participant in the world. When I imagine my life in any of the places I can see myself living, I see myself as a kind of ghost, a shadow, an onlooker just observing everyone else going about living their lives. And part of me is happy doing that. But part of me yearns and aches to be a part of it, but I don't know how. How do you suddenly know how to live a kind of life you've never been able to live before? How can I expect to take that leap and instinctively know what to do without tripping or faltering at times?

And part of it has to do with these different worlds I inhabit - "medical" and "real", not that the "medical" world is any less real than the "real" world, but it's more...surreal and just...different. These worlds are so different and I have been living mostly in the "medical" world for the past 10 years and especially in the past 3 or so years. Now I feel like I'm trying to straddle the two worlds, attempting to take some steps into the "real" world but not quite knowing how well I can balance with one foot still in the "medical" world (and sometimes more than just a foot). And how do I explain my past 10 years of existence mainly in the "medical" world to people in the "real" world? They can hear what I say, maybe sympathize with all I've been through, perhaps give me (unwanted) pity, but in the end they have no idea how it feels to look back at 10 years of life and feel like they were a blur and that they were years where, for me, the world stood still and I just watched as everyone around me kept living their lives and i was mostly just concerned with living, making it from day to day.

It's strange thinking about it all like this, imagining myself with one foot in the "medical" box and one foot in the "real world" box and trying to move forward like that. I do believe I can do it, that I can find the balance somewhere in there and manage to not go tumbling down to the ground, tripping over the two boxes, and end up with both feet back in the "medical" world. But it takes so much more effort and planning to try to achieve that balance. Strict bedtimes, strict schedules of infusions and medications (which are hard to sneak in while at work - pills, not infusions), trying to settle into a new home and have the energy to unpack and decorate without taking away from the energy needed for the more essential things, trying hard to eat as well as possible. It's exhausting just thinking of all the planning that has to go into trying to live this "normal" life and in the end, all the planning in the world can't stop a crash from coming. I feel in some ways like I'm the square peg trying to fit into the round hole. I'm this person who has all this medical baggage trying to squeeze through the door into that "real" world and it seems like some of my medical baggage is keeping me stuck in the doorway, unable to fully enter that "real" world.

Just some rambling thoughts on my "new" life. Maybe there's something in them, maybe there isn't. But that's the great thing about writing - even if you write and write and write and nothing good comes out, you can still keep writing and writing until you get to where you need to get.

Yours,
Penguini

Graduation! Oh, the Places You'll Go!

2007-08-03T19:28:00.000-05:00

(For my big graduation update, see my Caringbridge page.)

Oh, the Places You'll Go!
by Dr. Seuss

Congratulations!
Today is your day.
You're off to Great Places!
You're off and away!

You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go.

You'll look up and down streets. Look 'em over with care.
About some you will say, "I don't choose to go there."
With your head full of brains and your shoes full of feet,
you're too smart to go down any not-so-good street.

And you may not find any
you'll want to go down.
In that case, of course,
you'll head straight out of town.

It's opener there
in the wide open air.

Out there things can happen
and frequently do
to people as brainy
and footsy as you.

And when things start to happen,
don't worry. Don't stew.
Just go right along.
You'll start happening too.

OH!
THE PLACES YOU'LL GO!

You'll be on your way up!
You'll be seeing great sights!
You'll join the high fliers
who soar to high heights.

You won't lag behind, because you'll have the speed.
You'll pass the whole gang and you'll soon take the lead.
Wherever you fly, you'll be the best of the best.
Wherever you go, you will top all the rest.

Except when you don't
Because, sometimes, you won't.

I'm sorry to say so
but, sadly, it's true
and Hang-ups
can happen to you.

You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You'll be left in a Lurch.

You'll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you'll be in a Slump.

And when you're in a Slump,
you're not in for much fun.
Un-slumping yourself
is not easily done.

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right...
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it's not, I'm afraid you will find,
for a mind-maker-upper to make up his mind.

You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place...

...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.

NO!
That's not for you!

Somehow you'll escape
all that waiting and staying.
You'll find the bright places
where Boom Bands are playing.

With banner flip-flapping,
once more you'll ride high!
Ready for anything under the sky.
Ready because you're that kind of a guy!

Oh, the places you'll go! There is fun to be done!
There are points to be scored. there are games to be won.
And the magical things you can do with that ball
will make you the winning-est winner of all.
Fame! You'll be famous as famous can be,
with the whole wide world watching you win on TV.

Except when they don't.
Because, sometimes, they won't.

I'm afraid that some times
you'll play lonely games too.
Games you can't win
'cause you'll play against you.

All Alone!
Whether you like it or not,
Alone will be something
you'll be quite a lot.

And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won't want to go on.

But on you will go
though the weather be foul
On you will go
though your enemies prowl
On you will go
though the Hakken-Kraks howl
Onward up many
a frightening creek,
though your arms may get sore
and your sneakers may leak.

On and on you will hike
and I know you'll hike far
and face up to your problems
whatever they are.

You'll get mixed up, of course,
as you already know.
You'll get mixed up
with many strange birds as you go.
So be sure when you step.
Step with care and great tact
and remember that Life's
a Great Balancing Act.
Just never forget to be dexterous and deft.
And never mix up your right foot with your left.

And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)

KID, YOU'LL MOVE MOUNTAINS!

So...
be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
you're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!

Yours,
Penguini

Perfect Day

2007-07-12T13:45:00.000-05:00

What more could I want than this perfect day? Lazy clouds drifting across a pale blue sky, sun blazing down warmth, a cool pond to jump into when the heat brings a need for refreshment. I lie around all day on the dock, bobbing gently with the slow sloshing of the water and occasional big waves from passing motorboats. Gentle breezes rustle the leaves and cool things off just a little bit.Sipping Power Ade , first cool from a bottle with beads of sweat in response to the heat, then warm when the sun’s rays have gazed on it a while. A good book – the kind you didn’t plan on reading but stumbled upon when looking for something to dive into. I got this one (The Poisonwood Bible) at the used bookstore along with a handful of other books, most of which I’ve never heard of. The book has chapters of the perfect length – just long enough for me to get hot and need to cool off in the shimmering water. Spending the day in my bathing suit, the one I’ve had for so many years and just can’t get myself to get rid of because it’s just so familiar and fits just right, although the strap on the top is now held together with a safety pin.

Sunglasses. A hat. Power Ade. Salty potato chips (dipped in ketchup). Sunscreen. A good book. Sunshine. A dock on a cool lake. I wish everyday could be like today with such peace and ease. Nothing I have to do but be. Not really lazy but peaceful, serene, and introspective. Warmed by the soft, bright sunshine and cooled by the rippling blue water. Nothing else seems to matter but this moment.
--June 26, 2007

Scars

2007-07-12T13:44:00.001-05:00

I have my share of scars.
I’ve been cut, burned, broken.
I’ve bled as you have bled.
My scars are the witness
To my strength,
My perseverance,
The courage I possess.
Each scar reminds me to push through
Because I’ve already been through so much.
Life gets messy when you live it right.
There’s never an easy fix
And if it seems like there is one
It’s probably the wrong choice to make.
Healing is hard
And scars mark us.
But we are not wounded
Unless we just sit around and lick our wounds.
We are not victims
Unless we see ourselves as helpless.
We are survivors.
I am a survivor.
Strong.
Courageous.
Free to create my life!
--June 1, 2007

What is a dream?

2007-07-12T13:42:00.000-05:00

What is a dream
But a wing and a prayer.
A bit of fairy dust
A wisp of angel hair.

The crashing of waves
As they come to the shore.
Contented with life
But still wanting more.

A blue sky day,
Not a clouds in the sky.
A gentle butterfly
Fluttering by.

All the prayers in the world,
All the wishes and dreams,
Can be answered one moment
Then come apart at the seams.

But no wish is too little,
No dream too small.
You don’t have to dream big.
You don’t have to dream tall.

If you sit by the ocean
With sun on your face.
You may feel yourself slowing
Life’s quickening pace.

You may feel your heart swell
With each swell of the sea.
You may feel that’s enough,
Let go. Just be.

--August 27, 2006

Jagged Yesterdays

2007-07-12T13:41:00.000-05:00

Time can move onward so quickly. It’s as though it’s trying to run fast to catch up with some illusive treasure waiting just around the bend, sprinting toward tomorrow in hopes of finding something better or leaving the past far behind. But things follow us, even if we try to outrun them. Things are always there nipping at our heels, making us run faster in hopes of finding safety in a better tomorrow. You can’t outrun your past for it is a past of who you are. You can’t leave it behind any easier than you could leave a part of your heart behind.

Trying to outrun the past never works, the past can keep pace and always find you. But sometimes you can’t embrace it either without the jagged edges tearing into you, creating fresh wounds and re-opening old ones. What is one to do, then, with these old experiences and memories?

I see the footprints left behind; the scars only half-healed; the tracks of teardrops in my soul. And I see them in you. Your eyes are bright but show pain, disappointment, sorrow. Do not close the doorways of your soul to me, for I understand. Without words, I can see you clearly. Your tear-stained cheeks match my own. Your wounded heart, trying to heal, is so familiar to me. The brushstrokes of your life have been harsh at times, leaving streaks of sorrow.

We are so much the same, with pasts nipping at our heels and wounds half-healed. But I don’t presume to know your pain, that belongs only to you. I may understand, sympathize, empathize, but I do not know your pain the way you do. Our pasts are our own, belonging to no one else. And our futures are ours to create and mold. The past will always be there with us, but each day we create more past, leaving behind new experiences. Perhaps we can smooth those jagged edges with each new past we create. Life constantly changes as we shape our present and future. And as tomorrow becomes today, today will become yesterday and we must leave it behind. So make today worth remembering and maybe enough good todays will make the jagged yesterdays fade away.

--June 26, 2007

Expectations

2007-07-12T13:38:00.000-05:00

Everyone has expectations, for themselves and for other people. And far too often we confuse expectations with real wanting, needing, desiring. We have our own lives planned out to a point where we forget to ask ourselves who we are doing it for and what we really want to do deep down in our hearts.

I kept plodding along on a path of expectations for most of my life, too afraid to veer off into the less sure darkness to the right or left. Expectations other people had about me came to largely define me – my life was going to follow a certain path because that’s what I was “supposed” to do. I was terrified of breaking out of the box people had put me in because it might shock them, and what might they think of me then?

But expectations fall short eventually and we realize we can’t live up to them, and that we don’t want to let expectations define us. We can’t become…ourselves by allowing other people to determine the course of our lives. Expectations hold us back and pin us down. I want to shake them free from my mane and race in a different direction. I want to shock people with my boldness, the fierce and mighty side of my personality. I want to define myself and my future and be open to whatever the universe may choose to throw at me. It’s my time, my life, mine to fight for or surrender to, my time to take flight, soar, want more, and start to run free, wind in my hair and heart pumping wildly as I take off towards a future determined by no one else but me.
--July 3, 2007

Butterfly

2007-07-12T13:31:00.000-05:00

I have scars
Parts of me that broke
And never fully healed.
They are just there,
A part of me
And I make no apologies
For who I am
And the path that’s brought me here.
Ripples in the water
Change the whole current,
The butterfly affect.
I have built a cocoon around myself,
Around my life,
To try to heal my lasting scars,
To protect me, to make me feel safe.
But one day I will emerge,
A beautiful butterfly,
And I will change the world with a breath of wind.
Moved by my wings,
Ever so slightly
And no one may notice,
And no one may care,
But perhaps there is one person out there,
Just one,
Who will feel the breath of wind
Whispering in their ear
And maybe,
Just maybe,
They will be inspired to change the world
One butterfly at a time.
--October 13, 2006

My Independence Day

2007-07-04T13:40:00.000-05:00

I am an independence day baby, born 25 years ago today. I have never
really taken independence by the horns, though. But this year will be
my year of independence. This birthday is different, it marks the
beginning of a year of change. I am sprouting wings and learning to fly
on my own.

Although things in my past may have felt like they
were holding me back, pinning me down to the solid ground and
preventing my flight, I have found my way to let go and start to ride
the winds. This day, my 25th birthday, marks a kind of rebirth, a new beginning and a new life. My life of independence. My independence day.

Today
is special, a day I claim for myself in the midst of a bustling, busy
world moving so fast it’s hard to keep up sometimes. After many long
years of feeling like I’m sitting things out, watching from the
sidelines, I am rejoining the world, or it is rejoining me in a sense.
My new life is beginning – this will be my year of flight so just watch
me soar!

Our deepest fear...

2007-05-19T22:56:00.000-05:00

Life

2007-05-18T10:53:00.000-05:00

"Be the change you wish to see in the world."
--Gandhi

For a long time I was waiting. I was sitting around waiting for things to change. I was waiting for my life to begin. I was waiting around to be "better", "healthy", able to go out and do the things I want to do. It doesn't really matter WHAT I was waiting for, the point is that I was waiting - waiting rather than actively DOING. I was waiting for life to get a chance to stop by and happen to me rather than going out and making it happen for myself. I was hiding behind illness, behind excuses for staying stuck in the same rut for the last...I don't even know how many years. Life was there somewhere, I just couldn't quite imagine myself managing to find it.

But I'm not waiting anymore. I'm not going to sit around for the rest of my life waiting for life to happen. Because life isn't something you can passively sit around and wait to come knocking on your door. There are opportunities out there, but they are not going to come to my doorstep or tap me on the shoulder unless I'm actively open to them and, even better, LOOKING for them. Life isn't something to have happen to you or to wait until the time is right to begin. Who knows if that "right" time will ever come? Who knows how much time any of us has or when the next bend in the road might bring the unexpected that forces us to stop in our tracks or regain our balance before moving onward.

Change is inevitible. Standing still won't stop it from happening. And would it really be good if we could stop change? I used to feel like change was the enemy, to be fought and resisted with all my strength, and that maybe if I just dig my heels in I could somehow turn back time and go back to days when I thought things were better. I say thought there because how do I really know if things were better at any one moment than they are in this moment? Maybe there aren't any better or worse times, there are just DIFFERENT times. And every moment, every experience, every struggle and triumph is a part of who I am whether I can see it or not. Without even one of the things I've been through, who knows who I would be now!?!

So instead of fearing change, I will embrace it. Instead of sitting around and waiting for life to come to me, for the opportunities to come seek me out, I will go out and find them for myself. I will not let my life be run by anyone else but me. Of course that doesn't mean I'll always get what I want, but, as that Rolling Stones song goes, "You can't always get what you want but if you try sometime you find you get what you need."

Life is that twisting, turning adventure. We can live in fear of it, trying not to allow the next bend to come and for things to change. Or we can just plain LIVE it! We can embrace every opportunity and not just wait around for everything to be exactly how we want it to be. People change us, there's no stopping it. Experiences help us evolve, there's no denying it. And maybe somewhere in all this we have the opportunity to change other people in return. And maybe, just maybe, we can, in some small way, help to change the world.

Yours,
Penguini

2007-05-16T16:45:00.000-05:00

This isn't a poem of mine but one written by Oriah Mountain Dreamer, author of "The Invitation", "The Dance", and "The Call".

Night Tears

There is a crying
that happens at night
that does not come
while the light is with us.
There are things that cannot
be evaded
once the sun goes down.
Small nocturnal creatures
with sharp white teeth
silently gnaw at the edges of
belly and heart
when the darkness descends
and the void inside
grows larger.

It can split you open.

And the bone
in the centre of your chest
aches
like the cracked wishing bone
from the turkey breast.

And if we are strong enough
to be weak enough
we are given a wound
that never heals.
It is the gift
that keeps the heart open.

Oriah Mountain Dreamer © 1995

Spring!

2007-03-29T21:20:00.000-05:00

Bird songs,
Flittering by on airy wings.
From banch to air.
From air to sky.
The air smells clean,
Fresh,
Everything new.
Buds emerge from frozen ground
Reaching towards sunshine
And breezes
Softly blowin gby
As if to say,
"Wake up from your winter slumber
And gree the new day!"
Sunshine sparkles down,
Warm rays upon light-hungry ground.
Birth and rebirth.
Emerging from darkness.
Red cardinals hop around
On yellowed grass, showing the hars winter's grasp.
Ahh...it must be spring!

Hard Love

2007-03-09T16:25:00.000-05:00

He changed me so much. He changed me in ways I never thought possible. In ways I only dreamed about and in ways I never wanted. With the good comes the bad and everything we go through shapes us a little bit more into the person we will become someday.

He helped me accept who I am. To realize that I am enough. I am good enough. Just being me is enough for someone to love and accept. But he also showed me the parts of myself that are dark, that need examination. To be brought out into the light and understood instead of shoved deeper down inside and forgotten, surging up to the surface when I feel threatened or lonely.

Love has a way of doing that - showing you the good and bad and everything in between. Things you thought you had dealt with a long time ago resurface and problems you thought would never go away seem to melt into the background. Life is a little less complicated and so much more complex all at the same time. Things are in slow motion - the world seems to stop in a single moment and you wish you could stay there forever. But things seem to spin by so fast that before you know it the moments are gone, the memories just left as a foggy reminder of what was...and the questions of what might have been. Life changes. People change. Relationships change. And they all change you in the process.

I went into that relationship so unsure, yearning for love, longing for that one person who wanted to be the world to me and about whom I felt the same way. I wanted the kind of love that's everlasting, or at least perfect in the moment. Those moments that can last a lifetime. Kisses that seem to be able to melt you. Smiling and giggling at just the thought of him and wanting to share everything. Talking on the phone for hours about everything and nothing. But things get complicated when two people who are so different come together and try to make it work. Love isn't enough sometimes.

There's a Bob Franke song called "Hard Love". That's what it was - hard love. But, as it says in the song, "Love is never wasted, even when it's hard love."

Here's the song - the first verse doesn't apply to me but everything after that resonates very well with me and my experiences.

Hard Love
Words & Music by Bob Franke

I remember growing up like it was only yesterday
Mom & Daddy tried their best to guide me on my way
But the hard times & the liquor drove the easy love away
And the only love I knew about was hard love

It was hard love, every hour of the day
When Christmas to my birthday was a million years away
And the fear that came between them drove the tears into my play
There was love in daddy's house, but it was hard love

And I recall the gentle courtesy you gave me as I tried
To dissemble in politeness all the love I felt inside
And for every song of laughter was another song that cried
This ain't no easy weekend, this is hard love

It was hard love, every step of the way
Hard to be so close to you, so hard to turn away
And when all the stars and sentimental songs dissolved to day
There was nothing left to sing about but hard love

So I loved you for your courage, and your gentle sense of shame
And I loved you for your laughter and your language and your name
And I knew it was impossible, but I loved you just the same
Though' the only love I gave to you was hard love

It was hard love, it was hard on you, I know
When the only love I gave to you was love I couldn't show
You forgave the heart that loved you as your lover turned to go
Leaving nothing but the memory of hard love

So I'm standing in this phone booth with a dollar and a dime
Wondering what to say to you to ease your troubled mind
For the Lord's cross might redeem us, but our own just wastes our time
And to tell the two apart is always hard, love

So I'll tell you that I love you even though I'm far away
And I'll tell you how you change me as I live from day to day
How you help me to accept myself and I won't forget to say
Love is never wasted, even when it's hard love

Yes, it's hard love, but it's love all the same
Not the stuff of fantasy, but more than just a game
And the only kind of miracle that's worthy of the name
For the love that heals our lives is mostly hard love

©1982 Telephone Pole Music Publishing Co. (BMI)

Yours,
Penguini

Ahh...Nostalgia

2007-03-06T00:11:00.000-05:00

Looking back at childhood and remembering all the great, comforting things about it is something I guess I tend to do a lot. I had a good childhood overall with lots of great memories. And one of my favorite things related to my childhood is the muppets. I grew up in the era where Jim Henson was doing many of the voices and somehow the Sesame Street sketches seemed...different than they are today. I think of it as "classic" Sesame Street. Sketches like Rubber Ducky, Put Down the Ducky, Ladybug's Picnic, I Don't Want to Live on the Moon, Here Fishy, Fishy, Fishy, Dance Myself to Sleep, C is for Cookie, Captain Vegetable, Super Grover, Teenie Little Super Guy, the aliens, all those great Grover the Waiter ones, and so many others. (If you didn't figure it out, you can click on those links to go to the sketches on YouTube.) But my favorite sketch of all time is one that perhaps some of you know, although I have to admit that, in looking at a lot of those sketches on YouTube it's hard for me to not smile and laugh at so many others. I think it's still shown on new episodes of Sesame Street from time to time and maybe it's well known, maybe it's just something that's specific to my childhood and unkown to most other people (especially those not from my specific generation). But, you now have the opportunity to see the sketch, thanks to YouTube (which I think is one of the best methods of procrastination out there!). The sketch is called...well, I guess it's called Ma Na Ma Na since that's all that's said in it. I hope you see the charm that I see in it and come to love it as much as I do. And if not, just consider it a glimpse into my childhood, that time when things seemed a little less complicated and Saturday mornings were for cartoons or soccer games. Ahh, nostalgia.

Yours,
Penguini

Life's a Journey

2007-03-01T17:27:00.000-05:00

Our lives don't usually go as planned. The vision we had of the future when we were growing up doesn't quite become a reality (except in some extraordinary circumstances). Life gets in the way. But maybe life doesn't get in the way of our dreams at all. Maybe it's the other way around - our dreams, or rather the stubborn nature many of us have to hold on to our dreams, get in the way of life. It's easy to say that you should go with the flow and accept things as they come, but the reality is that some of us (maybe all of us to an extent) are planners. We make "to do" lists, we plan out our weeks, we have a plan for our lives. Maybe it's nothing extraordinary - it could just be to graduate high school, go on to college in finish in the "normal" four years to get a Bachelor's, then maybe some time off to save up some money while working full-time at some relevant (but maybe not altogether fulfilling) job, and then on to graduate school for a master's degree before settling down with a career and throw in some meaningful relationships, marriage, and kids to round the whole life plan out. It's nothing that strange, not overly optimistic, it's kind of a general, run-of-the-mill education, career, and life plan. But then things happen - illness, deaths, financial difficulties - and we are forced to veer off course. Maybe some things go according to plan - I graduated high school on time with my class (although somewhat unconventionally being homeschooled for three out of the four years of it), I applied and got into a good college and started on time, but since then it seems that the years have just been dragged out. Instead of graduating in four years as the plan was, it's taking me at least seven. I'm so thankful that I've been able to be in school and that I'm graduating at all, believe me, there were times when I really didn't think that would happen. And I've done well in school. Maybe I've had to spend more time on assignments because my brain is too fuzzy to concentrate, maybe I've turned things in late on multiple occasions, maybe I haven't gotten the grades I would have imagined on certain courses or assignments, but I'm finishing. The end is now in sight - hopefully less than six short months away. I see this as a huge accomplishment and I don't take it lightly. But at the same time, there is this question that keeps popping into my head - "what next?"

This is where I'm not sure what's getting in the way of what - whether it's my stubborn nature getting in the way of the direction life wants to take me or if life is veering me violently off course from where I was headed. But either way, I'm not going to be following the path that I had laid out for myself. My hope (notice the carefully chosen word there) that I will be able to get a part-time job - probably half-time (20 hours a week) - and make enough to save up some money and eventually be able to move out of my parents' house. It's not that I don't love my family and love spending time with them; it's that I am 24-years-old, soon to be 25-years-old, and it's so hard to be so dependent. Well, maybe it's not being dependent; it's more the lack of independence. I crave that independence of being on my own. I had never even given much thought to moving out - it was just sort of a given when thinking about growing up. And I did move out, multiple times. I lived on campus for two semesters (not consecutively) and really hated dorm-life and lived for...a few months in an apartment that really was just a disaster from the beginning (someone should have hit me on the head before I made that decision - I won't go into detail here, if you know what I'm talking about then you know what I'm talking about and if you don't, well, it's not really that important - but if you're really nosy you can ask me about it). Then I had a wonderful year living in an apartment with some wonderful roommates and that taste of independence was so great. I loved it and I loved where I was living and just the whole situation. I was flying on my own (well, sort of) and it was great. I want that again. And I want to be able to work. And go to graduate school. And be able to move around to see where I want to settle down (mainly Maine and Oregon). But life pulls me back and there's reality staring me in the face.

I know I will get to where I want to (or need to) be and it might be far from where I thought I'd be but I know there will be a space for me. I'll find a meaningful job that I can manage. I'll have a family. I'll live somewhere great. It just seems like life is moving in slow-motion as things take twice as long (or longer) than planned or anticipated. But I guess that's life. You can plan all you want, but there's no planning for the unpredictable things that pop up for all of us. I guess there's no such thing as a "life plan" unless we're willing to edit it from time to time. So write in pencil but write your past in pen so you can look back and see all that you've accomplished, regardless of whether it matches with the pencil scratchings you once inscribed. Life is a journey - enjoy the ride!

Yours,
Penguini

"Good Spots"

2007-02-15T07:15:00.000-05:00

Life isn't all clean and neat, wrapped up in a nice package with a bow all ready to be opened and enjoyed. Life is messy. Life is a constant roller coaster ride. Life is...well, life!

I know this isn't that profound and it's nothing new. People know life is messy and I know many writers have probably said just what I said, although I can't think of any off the top of my head right now. Anyway, the point I'm trying to get at is that you can't wait for life to get all wrapped up nice and pretty to start living it. You can't tip-toe around the messiness looking for a clean, neat place to land. You have to dive into the middle of it, mess and all, and wade through the muck and trudge through the puddles to get to the good spots. And the "good spots" are not necessarily the neat, clean, tidy places in life. For some that may be too boring and really no fun at all. For some people the "good spots" may be in the recovery from the muck - the kinds of things that come out of going through hell and making it out the other side: friendships, wisdom, a great appreciation for the little things, and a belief that even the messy times are worth living. And even in the middle of our despair or longing for a life other than the one we have, we can find little mini "good spots".

I spent a day trudging up to Logan Airport in Boston only to find out the flight I'm going out on has been cancelled due to inclement weather, not be able to get another flight out that day, have to trudge (of course trudge is not literal - I did not walk to and from Logan yesterday - and, yes, this really did happen to me yesterday) back home, making my dad drive two round-trips to the airport shuttle bus station to drop me off and then pick me up, later in the same day have my car die on me (it was revived after a little time to dry out), and do all this on less than two hours of sleep. I went through all that yesterday and grumbled about much of it but today I'm at the airport awaiting my first flight out at the beginning of another long day and I'm watching the sun rise, sitting in a pretty comfy rocking chair (who knew Logan had a few rocking chairs at this gate!?!), sipping some coffee, and getting a chance to write what flows out my fingertips and onto the screen. This is one of the "good spots", and I don't mean physically. I could still be annoyed and mad that I couldn't fly out yesterday, but I really could only be angry at Mother Nature, and I'm pretty sure she doesn't take complaints, especially since we're kind of destroying her. Or I could be mad at the airline for not announcing that the flight was cancelled early enough so that I wouldn't have made the trip to the airport yesterday. But what is that going to accomplish? Is that going to make me magically turn back time and be able to fly out on my intended flights, or at least my intended travel day? Of course not. All it will do is use up my energy, stress me out, and make me miserable. And I really don't want to be the reason I'm miserable. So I'll find that silver lining.

Don't get me wrong, I'm not wearing rosy colored classes. I was ticked off about the travel issues yesterday, and then having my car not start was just the icing on the cake, but yesterday is over and done, I'm getting ready to fly out today, in about 12 hours I'll be in Oregon (although waiting at the airport for my sister to pick me up - I'll have to wait there for about an hour but that's okay), and I'll be out there on vacation for more than a week. So why should I be angry now? Life is messy and we don't always get what we want. But you know what they say - "You can't always get what you want but you might just find you get what you need." Maybe I needed the day yesterday to do other things - run a few errands, bake cookies for my dad as a thank-you for all the driving and everything he did yesterday (although, had I flown out as intended he wouldn't have done the extra driving but it's still nice to be able to do something to say "thank you"), make sure I have everything I need for the trip (although I ended up forgetting my IV pump at home so my dad's mailing it to me overnight and hopefully I'll have it tomorrow), transfer my stuff from one semi-broken backpack to a different more comfortable backpack, and just be home with my family a little bit longer. I don't know the reasons, and I don't know that there always is a reason for things like this, but there doesn't have to be a reason. With or without a reason behind it, the silver lining is there...sometimes you just have to look harder...and maybe squint a little bit. Some things just suck, but I think we can make them suck a little less by not dwelling on the things that make us unhappy and focusing on the little things that make us smile.

Yours,
Penguini

Armor

2006-12-30T23:28:00.000-05:00

We try to protect ourselves. We enclose ourselves in a kind of shell, a kind of armor that we think can prevent us from getting hurt. We push people away when we really want to pull them close because we are afraid that they will hurt us. Experience has told us that sometimes even the ones who love you can hurt you more than you could imagine. These are the kinds of wounds that never completely heal or heal delicately so that any new jarring can rip them wide open again. We work hard for months, years, trying to heal these wounds. Trying to convince ourselves that things turned out for the best. Trying to hold the wound closed, desperately trying to help it heal. And eventually we do move on...or at least we keep moving forward. Because time will not stop to accommodate our grief.

It is painful to lose someone you love - whether it's through death or through other circumstances by which they fade away from our presence. They were once there in your life, offering love and support and guidance or just being there as a friendly reminder that someone cares. And then they're gone. Sometimes they may fade away slowly, becoming less involved in your life over time as you grow apart. Sometimes they may leave suddenly through death or a relationship breaking up. These sudden losses hit us hard. It's easier to deal with someone fading away because we are less aware of the loss until we stop and realize that they are no longer there and we haven't talked to or seen them in months...or longer. When someone leaves us suddenly we are much more acutely aware of the loss. We think about them a lot. We feel the heartwrenching pain of knowing they will never be there next to us again, at least not in the way that they were. We can't hold their hands or rest our heads on their shoulders. But I believe that the people we love are never really gone. We are connected to each other by the experiences and memories we have shared. The loved ones who have passed on are still here around us in spirit and their spirits live on in us, in the ways they have changed us and shaped our lives so they never really leave us.

And there are those whose paths have suddenly veered away from ours, who have broken our hearts in the process, and who are out there...somewhere...and just aren't living their lives with us. Those are perhaps the losses that hurt the most. The people who we shared so much with, spent so much time with, and felt connected to more than anyone else at times. When they are also the people who hurt us more than we knew we could be hurt we are left with this internal conflict. We loved them and usually we keep on loving them even when our hearts are torn to shreds but at the same time we want to hurt them as much as they hurt us. We want them to feel the wrench in their heart and have the knowledge that the person who was never supposed to hurt them has caused more pain than they could imagine. So we build armor. We pick up shields and try to protect ourselves from being hurt like that again.

But our armor doesn't just protect us, it encloses us. It keeps us distanced from people so that we are afraid to come out from behind the shields and show our true selves. When we expose ourselves for who we really are and allow ourselves to become vulnerable, we are opening ourselves up to opportunities but we are also leaving ourselves in danger of getting hurt again. When wounds are still fresh, it is easy to remember how much they hurt, but once they have begun to heal we can sometimes forget the real sting and the blade slicing through flesh is more painful than we remembered. Our else we remember that injury as being more painful than it was, and the risk of remaining closed is greater than the risk of opening up and allowing someone in. So we allow ourselves some space to explore. And maybe one day we'll find a safe harbor to rest in where we can let down our guards and cast off our armor, knowing that we can fly free without the fear of being shot down. "And the day came when the risk it took to remain tight inside the bud was more painful than the risk it took to blossom." --Anais Nin

Yours,
Penguini

Past Writings...Now Posted

2006-12-18T15:14:00.000-05:00

Okay, so you may be confused about the dates on some of the things recently posted. I usually have a notebook with me when I go pretty much anywhere and if I have time and thoughts floating around in my head (having them in my head isn't rare, but actually being able to catch them and/or stay with the same idea for very long is) I'll sit and write something. So these are things that I wrote about a month ago and I'm posting them with the date they were actually written rather than the date they were posted so they are NEW postings but they are OLD dates. I hope that makes some kind of sense...and that you actually cared to know any of that. If not, nevermind and continue on to read the posts! (Would they be post-dated or pre-dated?? I can never keep those straight.)

Yours,
Penguini

"Food Freedom"

2006-11-17T15:53:00.000-05:00

I'm sitting here in South Station in Boston waiting for my train home after a doctor's appointment at Mass General. South Station is a great place to people-watch, as are many busy public places in Boston. I'm sitting here with an almost untouched styrofoam container of chicken and broccoli and white rice. My stomach has put up with a fuss with each of the few small bites I've taken so I'm trying to listen to it (my stomach, not the food) and not push food on it when it obviously doesn't want it.

As I sit here people-watching on the little area for eating upstairs I'm struck, as I often am when I'm around people eating, by the kinds of food and quantity of food people are eating. A huge piece of pepperoni pizza, a big mac and fries, a container of fried orange chicken smothered in sweet glaze and fried rice on the side. Okay, so the selection of food here at South Station doesn't particularly give very many healthy options but it says a lot that the lines at McDonald's are much longer than the lines at the salad place, which doesn't seem to draw much of a crowd.

But it's not just the kinds of food people eat or how much they eat, it's that it very clearly brings to my attention how...I hate to say "abnormal" I am but it's what comes to mind. When I choose what I'm going to eat I can't even consider the greasy, cheese covered pizza or the fried chicken strips or the chicken covered in orange glaze. And I can't seriously consider salads because raw veggies will most often cause, nausea, pain, abdominal pressure, and just not be good. Essentially "fast food" is off limits. And it's not me making these decisions, my stomach makes them for me. So ti always amazes me when I see people eating "normally", at least "normally" for Americans. Eating a whole plate without any apparent problems. Going back for seconds...or even thirds. not having to worry if eating this or that will make you want to throw up or curl up in a ball with abdominal pain. "Food Freedom" I'll call it. And of course one can never tell what's going on inside - maybe the people I see eating bacon cheeseburgers and french fries have their own stomach issues. Maybe not. Just an interesting afternoon of people-watching.

Yours,
Penguini

Delicate Balance

2006-11-17T13:00:00.000-05:00

Right now I feel like everything is so delicately balanced. I'm tolerating my meds okay and showing slow but noticibile improvements. But I feel like any change could be a gust of wind knocking down this house of cards. And even without changing anything there's no way of knowing when the wind might blow stronger. My foundation is not solid. Meds are strategically placed, added, subtractedx to attempt to avoid side effects and prevent crashes. But they do not give me a solid foundation to build on.

Any thoughts I have about changing meds or trying to do without them altoegether always end with the fear that any change will (or at least could) be too much of a jolt to the delicate balance of things. One med causes nausea and low white cells (at least for me) so other meds are added to prevent that. Headaches require a migraine med at onset as well as a preventative med. And sleeping meds. And meds to keep my gut moving (as much as possible) and prevent bacterial overgrowth. Everything must be balanced and strategically planned to avoid interactions and minimize side effects.

And a lot of the time it feels like we're running a race, me and my doctors, eternally trying to catch up with the other runners and get a step or two ahead of the symptoms and diseases, but it always seems we play catch-up. We can anticipate things to a degree but more often than not it's a matter of trying to catch things early and keep up with new developments and symptoms. Reflux unexpectedly worsens significantly over time so meds are upped, one switched out for a stronger on, but even when one thing gets under control, something else is waiting right there to take its place.

A house of cards. Running a (seemingly) never-ending race. Maybe not the most positive or optimistic metaphors. But they are truthful. They are my life, my body, my thoughts, my day-to-day struggles. The house of cards will not necessarily come tumbling down around me - maybe I'll be lucky and a more solid foundation will form under me, allowing a sturdier house to be built. And the race will not necessarily always leave me one step behind the next thing, issue, problem, symptom, disease. Maybe those issues will diminish and those left will be less surprising and just a little slower so my doctors and I could keep pace with them. But everything is built upon "maybe"s and "what if"s - both the good and the bad. I'm tired of uncertainties, of not being able ot make plans, of never knowing what will happen next. Maybe I should look at it all differently. Maybe it's an opportunity for...something. But there I go with more "maybe"s.

Life is uncertain. You can plan all you want but in the end the plans could all be wiped away. Life is short - seize the day! But what do you do if you can't seize the day? What happens when one seized day results in a week spent in bed or a crash in health that pulls the rug out from under you and throws you into a tailspin? Should you seize the day anyway and suffer the consequences? My wonderful and wise beyond her years friend, Lexie, says, "If you can play, then play. If you need to rest, then rest." How did kids get to be so smart?

Yours,
Penguini

Stupid brain!

2006-11-13T14:38:00.000-05:00

I'm sitting here at school, totally wiped out and just feeling like I need to curl up in a ball and sleep for the rest of the week, but I'm here. I'm here early as I usually am to come sit in the office of the student development director (who is so sweet) to infuse my afternoon dose of IV antibiotics. I got here, got myself set up at the table, pulled out my bag of IV stuff, and realized I'd packed everything I needed except the so important alchohol pads. I spent a while rummaging through my backpack and purse (of course it's not the purse I usually have, it's a new one so there hasn't been time for a couple of alcohol pads to get lost in it) and came up with nothing. Even if I had found one pad, one measly little pad, I could have made that work but I found none. So faced with the decision of skipping the afternoon dose (which I so hate to do, especially since I missed a few doses last week while I was out doing stuff in Montreal) or hooking up without cleaning the end of my IV line which would risk infection. I don't know exactly what the chance of infection is in doing that but I'm not chancing it so I'm here with an hour and a half to kill and this will be yet another skipped dose. In total, I've probably only missed 4 or 5 doses since starting it in the middle of September but still, every dose missed could potentially cause problems.

So I'm kicking myself and just generally annoyed and frustrated that I forgot to pack that very basic necessity. And of course I didn't pack my little bag of extra IV supplies that I usually carry in my IV hydration bag because I'm using a different bag. It seems like maybe I wasn't supposed to do this afternoon dose because what are the chances that I wouldn't have even one alcohol pad hanging around in any of my bags! Seriously, most of my bags have at least a few stuck at the bottom of one of the compartments so it's just weird that there aren't any in the bags I happen to have with me. It's amazing to think of how important such a simple thing can be. I bet I'll never make this mistake again (although chances are I will). At least I'll have to stick some extra alcohol pads in all of my bags just in case I run into a similar situation. Oh well, I'll try not to stress over it since there's nothing I can do about it now. And, like I said, maybe I'm just not supposed to do my dose this afternoon. Maybe my body needs the afternoon off to continue recovering from such a tiring week last week. At least I have my homework and computer with me to occupy this extra time before class!

Yours,
Penguini

Fenced In

2006-11-10T12:10:00.000-05:00

I have been evaluating my life lately. Taking a look at my current priorities (or what seem to be my priorities) and taking stock of my passions, my dreams and aspirations. To an extent I guess I'm having a ~~mid-life~~ quarter-life crisis. But "crisis" isn't quite right. It's more of a "quarter-life evaluation" with the prospect of re-organization.

I think this kind of evaluation is very important to do at times or else it might turn into a crisis when you realize at 40- or 50-years-old that your life has veered off course and getting back on track will take much more effort and potentially become chaotic. So I'm evaluating things and I'm discovering (or realizing) that my current priorities, while fine and more or less "safe" and "responsible", will not necessarily bring me lasting happiness and help me fulfill my dreams and aspirations.

I'm usually the one to play it safe. I tend to dream big but act cautiously to avoid failure. But sometimes you just have to make a leap, take the plunge, risk failure and possible unhappiness in order to figure out what will bring you happiness.

I am tethered down to some extent by my health, both by the diseases themselves and by the treatments for them. In fact, I'm often literally tethered - to an IV pole or a portable pump in a backpack. I stay as mobile as possible but I am tied down nevertheless. Anytime I think about moving away - to Maine or to Oregon - the question always arises of what I'd do about doctors. And if I'd be able to support myself. And what if I got sicker and was living to far from home to go and be taken care of by my family. I want to dream big and take the leap, but these strings and IV tubing seem to hold me where I am - tied down by the need to stay where I am with my doctors and family to help take care of me.

Yesterday I went to the Montreal Contemporary Art Museum (yes, I'm in Montreal right now) and I saw this photograph that just spoke to me and more or less explained how I feel about my life. It was of a woman sitting on the ground looking out at the world below her (it was on a hill of some sort and shot from behind the woman). And there was a fence in front of her as though she was caged in. That's me - the woman longingly looking out at the world and all its possibilities but I have a fence keeping me from the world. Maybe the fence will dissolve away. Or maybe I'll learn to jump over it or fly out of the cage. The world is waiting there in front of me and one day I'll make the leap and learn to fly.

Yours,
Penguini

Penguins

2006-11-09T15:34:00.000-05:00

I'm not sure why I feel such a connection to penguins. I think it dates back to my childhood because once when I was probably 9 or 10 (or maybe younger) I decided to do a report on penguins. I don't remember why I chose penguins of all things (the only other report I remember writing while I was homeschooled was on William Shakespeare) but I vaguely remember doing research and organizing the facts on index cards. But my real fascination with and love of penguins began when I was in my teens and my older sister gave me the nickname "Penguini" (my pen name on this blog).

And now as I sit here in front of the Antarctic part of the Biodome in Montreal, watching the penguins being fed, I find my fascination only growing. Here I am seeing king penguins up close and in person for the first time and marvelling at how differently they act from the other kinds of penguins. The gentoo penguins in this exhibit are full of energy, diving in and out of the water and seeming to show off to the onlookers at times with their fancy swimming. The rockhoppers and macaroni penguins are more laid back but still moving around a bit and...well, hopping on the rocks! And then there are the king penguins. They are the largest in this exhibit (and the biggest I've ever seen, the emporer penguins are the only bigger ones) but they only come up to abou tthe thigh of the man feeding them (maybe 3' tall). They seem calm and peaceful and proud. Standing quietly to one side, only walking around a little bit. They look magestic and like they are the "parents" of the other breeds in the exhibit. My favorite kind of penguins before were the little blue (aka fairy) penguins that live in Australia but I feel a strong pull towards these bigger and much more peaceful ones. I'm envious of the man inside the exhibit feeding them, talking to them (although I can't hear it because the exhibit is encased in glass, being that it's very cold inside the exhibit). I want to have real contact with penguins sometime in my life.

For now I'll just take the chance to sit here with them and marvel at their elegance in the midst of clumsiness. Flightless birds, out of place in the animal kingdom. But it just goes to show that being different can be wonderful. And just because your wings can't bring you inot the sky doesn't mean you won't find a way to fly. The water is their air and in the ocean they can soar.

Yours,
Penguini

Progress

2006-11-07T21:30:00.000-05:00

This afternoon while ascending an escalator from the underground part of Montreal to the street level after spending hours slowly working my way through the Montreal Holocaust Memorial (a really amazing museum if you ever get the chance to go) and another hour walking through the Musee D'Archeologie et D'Histoire de Montreal (Museum of Archeology and History of Montreal) I couldn't help but break out into a big grin. It wasn't a funny joke that popped into my mind or a happy memory that I was remembering. It was something so simple. I had managed with a busy afternoon which included quite a bit of walking around (although I took breaks to sit and rest) and I was still standing at the end of it. This is something that probably wouldn't have happened if I was on this trip a few months ago and definitely not if it was a little less than a year ago when I could barely climb a set of stairs. Almost exactly a year ago I was marvelling at very similar progress while on a trip with my dad to Baltimore to attend the same annual conference that has brought us to Montreal. And, not surprisingly, a year ago I was at about the same point of treatment with the same antibiotic as I'm on now. That was when my progress really started to show. It wasn't a huge difference, not night and day, but it was something. I was taking a step in the right direction.

And this is what I was thinking this afternoon as I was walking around the city, seeing the sites, stopping in little shops, generally having a good time. True, I was hooked up to an IV the whole time with the vitamin and mineral enhanced saline and infusion pump tucked into my "day trip" sized L.L. Bean backpack and that no doubt had a lot to do with my energy holding up relatively well throughout the afternoon. And I had to cut the afternoon short to come back to the hotel and hook up to my afternoon dose of IV antibiotics. And my feet hurt...a lot. Sure, I'm feeling worn out and wish I could sleep for a few days but I'm not curled up in the fetal position with pains in my legs and a bad headache. I'm not lying around afraid I'm going to throw up. I'm not falling asleep left and right. I'm not "normal" (I hate to use that term since it's so subjective) as the backpack IV shows. But for this one afternoon I was just another person walking the streets of Montreal. Another tourist pulling out her map every few minutes to make sure she's on the right road and hasn't missed the attraction she's looking for. Another person sitting on the Metro trying to get from poing A to point B.

Every step in the right direction is a mini-victory. Ground gained that could be taken away at any point, I don't know the future, but I know right now. Right now I'm in a beautiful city where I don't understand or speak the major language but has so much to offer. Right now I'm trying to take in everything. Right now I'm able to walk on my own two feet. Right now I'm able to sit down to dinner with my dad. Right now I'm able to marvel at the beautiful buildings and experience everything. Progress can't be measured in numbers or weeks or months. There are no guarantees that even small progress will last long, so savor the moments.

Yours,
Penguini

Detours

2006-10-29T17:46:00.000-05:00

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." --E.M. Forster

None of us choose this kind of life. We didn't wake up one morning and think, "Gee, I'm not so fond of working and going out with friends and being "normal", I think I'll see what it's like to be sick all the time!" As much as we seem optimistic and happy, we are constantly struggling to accept the life that we have been given and to not sink down into a pit of despair, depression, and feeling sorry for ourselves. We try, and we try, and we try. We try to be optimistic, try to focus our (limited) energy on the things we DO have control over, however few and far between they may be. We try to focus on the little things that can brighten our day - the fresh smell of spring, watching a favorite movie, getting an e-mail from a friend, a soothing cup of tea, sitting outside in the sunshine, snowflakes slowly floating to the ground. These little things mean so much more when the big things aren't happy or soothing.

We usually can't go out to a movie because we are too tired, sitting up for that long would cause major problems, or our immune systems are so bottomed out that being around a group of strangers and their germs could be too much to handle. So instead we subscribe to Netflix and watch movies while snuggled up in bed.

We often cannot handle reading for any period of time because our heads hurt, or our eyes just can't focus, or our brains are so foggy that we cannot understand what's written on the page or remember what we just read (which makes following a storyline very difficult). So instead we get books on CD out of the library or buy and download them online and we listen to stories. Old stories are comforting, there's something to be said for familiarity.

We sometimes have trouble eating "real" food (you know, basically everything you'd find on a menu at...any restaurant) because our stomachs turn somersaults with each bite, or we have to curl up in pain after eating, or we are unfortunate enough to have our meals end up going in reverse. So instead we enjoy slowly sipping tea or exploring new varieties of popsicles (yes, they sometimes become a food group all their own!).

We frequently can't leave the house because we're having trouble walking, or sitting up in the car is too exhausting, or we are attached to IV poles too much of the day. So instead we throw our windows open wide when the weather is warm and smell the fresh air or we sit out on the porch curled up in a blanket and watch the clouds floating across the sky. Or, during winter, we curl up in bed or on the couch by a window and watch the snowflakes float down to the ground, seeming to turn the world from a bleak, dark landscape to one twinkling with life and light.

We intermittently can't help but spend the day sleeping or curled up on the bathroom floor just hoping we don't throw up (or hoping to stop throwing up). So we surround ourselves with peaceful things, we light candles that send the scent of vanilla and cinnamon throughout our rooms, we keep blankets and pillows close by that can be grabbed to make a little bed on the bathroom floor, we watch DVDs on our computers to help pass the time and take our minds off things.

We sing when we have enough breath, and when we don't we sing on the inside.

We dance when our legs will hold us, and when they won't we carry the movement in our hearts.

We laugh when our bellies don't hurt, and when they do our spirits are giggling and laughing.

We didn't choose this life. And I don't think any of us would say that they are glad they got sick, at least not in the way that you'd be glad to get a new TV or to see a good friend. We are not glad, but there are parts of being sick that, when looked at in the right way, can bring more meaning and perspective to our lives. The little things become the big things, and the big things, well, they just kind of fade away and become less important (in a good way). We don't see the world all rosy and wonderful. We have seen aspects of life that make things seem downright bleak. And scary. Life can be very scary when questions of what to be when you grow up, who you would like to marry, and how many kids you would like to have become questions of whether it would be too exhausting to leave the house, whether you need to spend the day in bed resting, and whether you need to call in refills of any medications.

It's easy to slip into a mode of feeling sorry for yourself. To look at the world around us, at the people around us, and only see those things that we cannot do, that we're missing out on, that we long in our hearts to be able to do again (or for the first time). But falling into that pit doesn't help anything. Don't get me wrong, I think it's only natural to have periods of feeling sorry for ourselves and it's unrealistic to expect people who are so very NOT in control of their lives to keep the rosy glasses on all the time. When we are in the comforts of our bed or talking to someone we trust we can let go, cry for all the things we want to be able to do, curse the world for being unfair, and allow ourselves to acknowledge all that we've lost. But once we are done crying, done cursing, done feeling sorry for ourselves we pick ourselves up and go back to living our lives.

Our lives may not be what we wanted. We may have been planning for a life full of socializing, working hard, having a family, becoming a successful person, wife, husband, mother, father, career man or woman. But one thing that our lives have taught us is that no matter how much we plan, things can often take a detour and our end point isn't what we had mapped out for ourselves. And planning is a double-edged sword. If we plan we can sometimes prepare ourselves for doing something "normal" like going out to the movies or on a trip to visit friends or family. But sometimes it doesn't matter how much we plan, no matter how much we save up our spoons we are simply unable to visit the world of "normalcy" - our joints and muscles just won't support us, our low energy level prevents us from moving more than is absolutely necessary, our stomachs just can't handle being without a heating pad, our heads throb and we cannot handle exposure to light. Planning can bring about disappointment and further resentment of our bodies and limited lives. And we need flexibility or we will constantly be recovering from overdoing it or put ourselves in situations that are detrimental to our health.

We didn't choose this life, but it's the life we have. It's all we have and we cannot spend it thinking about all the things we could have done. Instead we must focus our energy on living this life to the fullest. We must push ourselves to get up when we can and allow ourselves to stay in bed when we need to. We need to avoid blaming ourselves, or our bodies, or our loved ones for the life we have. It's the only life we have and we must make the best of it. Afterall, "Our lives are not determined by what happens to us but by how we react to what happens, not by what life brings to us, but by the attitude we bring to life. A positive attitude causes a chain reaction of positive thoughts, events, and outcomes. It is a catalyst, a spark that creates extraordinary results." --Anonymous

Yours,
Penguini

Freedom of Speech?

2006-10-25T18:47:00.000-05:00

Yes, there's a question mark at the end of the title of this post. There is a lot held in that question mark. Before I explain, let me just say that I usually don't get into politics, and this isn't really about politics but about our rights in this country and the lengths some people will apparently go to when someone says something they don't agree with.

This afternoon I was just resting in my comfy chair looking around at things on the internet, including music videos. Among other videos I watched the video for the Dixie Chicks song Not Ready to Make Nice.

Here is the music video of the song:

Music Video Codes - MySpace Layouts

And the lyrics:

Forgive, sounds good
Forget, I’m not sure I could
They say time heals everything
But I’m still waiting

I’m through with doubt
There’s nothing left for me to figure out
I’ve paid a price
And I’ll keep paying

I’m not ready to make nice
I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should

I know you said
Can’t you just get over it
It turned my whole world around
And I kind of like it

I made my bed and I sleep like a baby
With no regrets and I don’t mind sayin’
It’s a sad sad story when a mother will teach her
Daughter that she ought to hate a perfect stranger
And how in the world can the words that I said
Send somebody so over the edge
That they’d write me a letter
Sayin’ that I better shut up and sing
Or my life will be over

I’m not ready to make nice
I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should

(I’m not ready to make nice)
I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should

Forgive, sounds good
Forget, I’m not sure I could
They say time heals everything
But I’m still waiting

I had seen them on a talk show (I think it was Ellen) a few weeks ago performing this song and talking a bit about the story behind it. If you don't know the story behind them and freedom of speech, here are a few articles that explain what happened in 2003.

Greater Democracy: Discouraging Freedom of Speech
CNN: Dixie Chicks pulled from air after bashing Bush
Dixie Chicks: Still Defiant

Basically, at a concert in March 2003 the lead singer exercised her right of freedom of speech and said "we're ashamed the president of the United States is from Texas." After that, they were banned from being played on some radio stations, they got death threats, people were encouraged to throw out their CDs and concert tickets, and they were called traitors and told to "move to France". The whole turn of events is pretty sad and scary. Apparently you're not considered "patriotic" by expressing your thoughts. Apparently our rights are only okay if we express the same views as everyone else. You don't have to agree with what other people say, but if we start taking away people's rights to freedom of speech how is that being patriotic? When I have expressed some views that are unpopular, I have faced arguments and been told I should move to Canada. Again I say, this is a sad and scary state of the country. The Dixie Chicks are now being played again on most radio stations (at least from the information I found online) but this issue of free speech is still a big deal. This new song, Not Ready to Make Nice focuses on them not being ready to just forget about the turn of events that caused so many people to hate them for the words they spoke.

There is apparently a movie coming out soon about the aftermath of the Dixie Chicks' exercising their right to free speech at that concert in 2003 called "Shut Up and Sing" (in the trailer there's a clip of a man and woman saying, "keep playin', keep makin' music, and keep your mouth shut"). You can read more about it here on their website and there's a link to a trailer of it. I strongly urge you all to go watch the trailer. No matter what your political views, no matter what your choice of music may be, I feel very strongly that this is an important topic that needs to be discussed. We cannot become a dictatorship. We are supposed to stand for freedom and we cannot become so caught up in our own beliefs and views that we forget about the rights that each and every one of us has. Stand up for what you believe, you have the right, but remember that everyone else has that same right.

Yours,
Penguini

Scent Memories

2006-10-25T13:38:00.000-05:00

"Some memories are realities, and are better than anything that can ever happen to one again."
--Willa Cather, My Antonia

It's amazing how many memories we can store. And it's even more interesting how and when the memories are triggered to pop up. Whether it's walking by a building that you remember going to long ago and the sight of it unexpectedly brings up those memories. Or hearing some sound, a train whistle or the gentle lapping of waves along the shore, which triggers a memory of a special time. Or smelling a scent that immediately takes you back to a time or place you hadn't been thinking about. It's this last one that has surprised me repeatedly in the last week or two.

After rummaging around in the glove compartment in my car to put my new registration in there, I found some car air fresheners that I believe I bought soon after I got my car (yes, they've apparently been sitting in there for about 4 years). It was one of those little trees that hangs from your rearview mirror and smells like pine, or at least is supposed to smell like pine (those never really quite smell like what they're supposed to smell like). So I decided to hang it up and no sooner had I opened up the package than I was jerked back 4 years to the winter of 2002 when I last had one of those hung up in my car. The scent immediately brought me back to what was a wonderful time while I was in the midst of it but now brings with it many mixed emotions. In the winter of 2002 I was doing pretty well health-wise, just finishing up 6 months of IV antibiotics that seemed to give me back some semblance of my life, but most importantly it was the beginning of a serious relationship that changed my life. During that relationship I usually did most of the driving since his car was...well, not in the best winterized shape (he had no heat in his car). Sitting there in my car the other day, I was brought back to an afternoon spent driving around doing Christmas shopping and just being so happy to be together. To seemingly normal, uneventful drives to the movies, to go out to eat, and a million other simple events that together form a ball of memories that always seem to bounce back up when I'm not expecting it. That relationship was one of the happiest times in my life so far but brings with it memories of one of the most difficult times in my life.

I can deal with health problems, I can deal with not being able to go out and do "normal" things, I can deal with tests and being poked and prodded but when it comes to relationships, not necessarily romantic relationships but just relationships with people in general, there is a much higher danger of getting hurt. Putting your heart out there can be amazing, can bring a level of closeness and happiness that simply can't be felt by guarding yourself, but it brings with it the danger of being sliced open. Our hearts are fragile things and, once broken, they can take an eternity to heal and perhaps can never be fully healed but always left with the scars of our lives. No matter how many times we are hurt, we have to find a way to patch up our wounds and not live the rest of our lives with a shield around our hearts and our lives.

So I got hurt...badly. He didn't hurt me on purpose. It wasn't an act of malevolence. It was one of those things that just happens. When a relationship ends, most of the time someone is going to get hurt. And I was just that unlucky person. I had put myself so much into that relationship, for once I felt ”normal” in some capacity. I had a boyfriend. I was going out to the movies or just sitting around at home and watching TV. I was going out to eat. I was cooking him dinner. I was ”normal”! I was doing what so many other people my age were doing. For the first time in a long time, I was able to concentrate on something other than my health and it was an amazing feeling. And then it crashed down around me and I was left devastated, in a state that I still have not quite recovered from. I don’t know if I ever really want to fully recover – I feel that the scars left from that very difficult time will remind me of how good things can be as well as how bad they can end up. And both the good and bad times of that relationship, and so many other things in my life, have shaped me and changed me, hopefully for the better.

So you can see the difficulty I’ve had with that little, usually insignificant, unremarkable green tree hanging from my rearview mirror. Every time I open up the door of my car, I get a whiff of that pine scent and a surge of memories with it. My first instinct when this happened and really surprised me was to take down the little tree, throw it away, and note to never buy a car air freshener of that scent again. But I fought that urge. I don’t want that scent to be forever connected to those mixed emotions. I want to overcome that, in a way, and reprogram my mind (or nose) to be able to associate that smell with other things and not just be so overcome with memories that I may not want to be forced to think about when I’m driving around. Maybe that will be much more difficult than I hope. Maybe I’ll get to a point where I can’t take it anymore and have to just throw that little tree away and never buy that scent again. Or maybe I’ll just need to surrender to those memories and find a way to not be overtaken by them whenever they pop up. Maybe that scent will help me remember that time when I was “normal” and so happy. We must have these sense memories for a reason. And we must take the bad memories with the good. Maybe it will help me remember that we all must be careful how we treat others.

"Be kind - everyone you meet is fighting a hard battle."--John Watson

Yours,
Penguini

Enjoy the Ride

2006-10-10T15:41:00.000-05:00

You can't run from the world. You can't run and you can't hide, it will always find you. The days of being able to hide under your covers from all the bad things out there in the world are long gone. There are always going to be bad things out there and a lot of the time it may seem like they are aimed directly at you and there is no place to run to avoid them. But maybe the key is to not run. Maybe being hit with it in the back as you're running away is only going to make it worse, prevent you from seeing it as clearly as possible before it hits so you can be prepared for it. I guess it comes down to the question of how you want to deal with pain, with suffering, with disappointments, with let downs, with all the big bad things the world can (and does) throw at you - do you want to deny that it's going to happen until the moment that it slams into your back and sends you flying to the ground or do you want to face the world, eyes wide open and taking it all in, and see the big bad things for what they are while still enjoying the view from the mountain top. You can't hide your head in the sand. The world doesn't work that way. The best we can do is lie on the sand and soak up the sun while it's out and not worry about the storm that may hit and wash us away with the tide. Because those things are always going to be there - the "what if"s, the hypothetical disasters that could be waiting just around the bend - but we have no control over when they'll hit so we might as well enjoy the ride.

Yours,
Penguini

Can you imagine?

2006-10-04T13:06:00.000-05:00

When you think of what in your life is most important, what comes to mind? Family? Friends? Love? Are there any things - objects, tangible items, possessions - on your list of what's most important to you? I bet there aren't, and if there are perhaps you should re-think your priorities.

So if tangible items don't make the list of importance, why do we all spend so much time worried about buying the latest car, the fancy new mp3 player, the bigger and better TV. Why do we focus on getting more and more? And in the midst of all that, are we really keeping in mind what's really important?

Have you passed up a chance to spend time with your family because you want to go to the mall? Have you put off visiting a friend because you just can't squeeze it in around work and all those errands that just have to be done today?

True, material things can make life easier. Imagine life before VCRs to tape a show or movie you'll miss. And it certainly is easier to carry around an entire CD collection in one handy, compact mp3 player. And some things are obviously necessary, but life's necessities are just the basics and we (by that I mean our society as a whole) are certainly focused on getting more and more, bigger and better, the newer the better.

In a society that stresses the "good life", living beyond one's means, keeping up with the Joneses (whoever they are), where you're immediately bombarded with commercials for super this and new and improved that, how can we avoid being taken in by such commercialism? What would happen if we just decided to ignore it? To turn off the TV's, shut down the computers, stop our cars, and emerge from our dazed states. Can you even imagine how things could be? Is it too mind boggling or can you picture a simpler (although far from simplistic) world? Can you imagine??

Yours,
Penguini

You are what you eat

2006-10-01T18:19:00.000-05:00

Why is it so hard to do what is good for us? Why do we do things that we know will cause us (or others) pain or suffering? You might think I'm talking about being kind to others, not hurting or lying to people, not sacrificing our own health and well being in order to be successful or wealthy. But no, I'm not talking about anything quite that profound (although this could easily be made about those things). I'm talking more about the mundane things, like what we eat. Why is it so hard to eat vegetables when we know they are good for us? Why do we choose the fluffy, non-nutritious white bread over the whole grain ones? And why do we eat things that we KNOW will not sit well on our stomachs, cause pain or other discomfort, and otherwise just be bad for us?

This all comes from a bad choice of a snack to munch on a little while ago. Granted, my GI tract is anything but "normal" or "healthy", but I know more or less what I can handle and what I can't at any given time. So when I grabbed the bag of (low-fat) granola and started munching on it while working on school work I KNEW it wasn't a good idea with the way my stomach has been over the past week or so. On my GOOD days I can tolerate a little granola or something equally difficult to digest but I know that on my bad days (or even my middle-of-the-road days) eating something like that is just asking for trouble. But somehow my brain gets overruled by my taste buds or desire for something crunchy to snack on and I just can't help myself from eating a little bit of things I shouldn't. And then after a few minutes of munching I remember why it is that I avoid those foods. Pain, nausea, just generally not feeling well.

So why do I repeatedly do this to myself? Why do I look at some foods, have my brain tell me it's NOT a good idea to eat it, but still go ahead and have some anyway? Do I have no will power? Or do I think deep down that things will be different this time, that maybe things have gotten better and I won't have to deal with all the problems that come with eating "normally"? I don't know the answer to any of these questions but it's an ongoing struggle with me. Instead of sticking to the applesauce, soup, and other mushy/liquidy foods I go out on a limb and try eating "real" food only to end up in pain or feeling like I'm going to throw up.

Don't get me wrong, this doesn't happen all the time. There are days (even whole WEEKS) where I can eat many more different foods without much trouble. I can have baked chicken breasts, sandwiches (made with vegetarian "meat" and rice cheese), cereal, sometimes even adapted pizza or pasta. I can tolerate some things more often than others but there ARE days where I hardly have to watch what I eat at all. But the days of paying for eating much of anything that's "normal" outnumber the ones of being able to eat anything I want (within reason - I still can't handle much fat or fiber). I just don't know why I'm not able to really listen to my brain when it says I shouldn't eat something. And this extends to anyone, not just someone with stomach problems. Do you eat your vegetables and fruits and whole grains everyday? Do you give in to fast food even when you know it's bad for you and will probably leave you at least mildly sick to your stomach? Do you snack all day long on chips and cookies and soda or do you stick to carrot sticks and apples and water? And speaking of water, do you drink your 8 glasses a day? Do you stay way from foods that you know you SHOULDN'T have or do you just eat them anyway and pay the price later?

You don't have to answer those questions, but maybe we should all ask ourselves why we do what we do when we know it's bad for us. With more people in our society being diagnosed with Diabetes and obesity, I think we as a society need to look at what's wrong with our lifestyles. We need to look at why it's easier and cheaper to pick up a double bacon cheeseburger at McDonalds than to make chicken and a salad at home. We need to ask why most public schools continue to serve food high in fat and saturated fat. (For more information on the Boston Public School system's lunch program, see this article.) How many of you have seen Super Size Me, a documentary about how bad McDonald's food is for you? Do you know the nutritional content of that can of soda? (Talk about empty, sugar calories.) Have you seen how big portion sizes SHOULD be versus how they ARE in the US? It's shocking to see how bad our diets have become. An average diet should consist of approximately 2000 calories and approximately 60 grams of fat (with less than approximately 20 grams of saturated fat). Did you know that a Big Mac carries a whopping 30 grams of fat and 10 grams of saturated fat? And if you make it a meal and add a large order of french fries you'll be doubling the amount of fat and taking in over 1100 calories? It's crazy.

So let's say you're watching what you eat and when you stop at McDonald's you make a "smart" choice and go with a salad thinking it will be good for you. It could be, if you go with a grilled chicken salad and skip the dressing (or go for a little of the low-fat offerings). But if you go with a Caesar salad with crispy chicken (i.e. fried chicken strips), the fat content more than doubles, and if you add creamy Caesar dressing you'll end up with 31 grams of fat - MORE than a Big Mac!

I didn't mean for this to turn into a whole nutrition rant but it really makes you wonder why our society is stuck in these ways. Are we really only interested in how things TASTE and we disregard how they will affect our health in the long (or even short) term? Or are we so bombarded with advertisements for new foods high in fat and saturated fat and low in real nutritional value that we can't help but go out and buy the newest KFC bowl or McDonald's crispy chicken sandwich? It seems as though we have two choices - just sit back and let the fast food industry become more and more powerful or make a stand against it. It doesn't have to be a big stand. I'm not talking about picket signs outside the local Taco Bell or Burger King. Imagine what we could do if a lot of us decided to start making more healthy choices, started cooking at home more often, started bringing sandwiches or salads to work with us instead of stopping off at the nearest fast food joint to grab a bite to eat, started looking at the big picture! The fast food places would lose money and perhaps be forced to serve some food that is REALLY healthy rather than simply looking healthy as with the McDonald's Caesar salad. Buy organic fruits and vegetables. Look for more quick and easy dinners that you can make using healthy ingredients instead of calling out for pizza (or for that matter, keep some pizza dough in your fridge or freezer and make your own pizza with lots of healthy toppings - skip the artery clogging pepperoni and sausage and instead put on garlic, chicken, and onions for a flavorful and healthy alternative). Just take a few minutes to really look at your diet and your eating habits and see if there are areas where you can make small changes towards a healthier diet. Or just ignore me and go on your merry way. The choice is yours.

Yours,
Penguini

Change

2006-08-21T11:32:00.000-05:00

I don't like change. It's not that I'm not flexible - I can be flexible and easy going a lot of the time - but there are some areas and circumstances when I seem to have trouble handling things being different than usual. I guess I'm a creature of habit, but it's more than that; it goes deeper than stubbornness. It's difficult to explain but I'll do my best.

I suspect that maybe some of my difficulty with change stems from a difficult move from Tennessee to Massachusetts when I was three. I hid in the closet while the moving men were packing up, but no one is sure if it was because I didn't want ot move or if I was just scared of the moving men. I screamed and cried in the car the whole ride up to Massachusetts with my aunt and uncle who never let me forget it. And just in general I obviously didn't want to move. But that's not what I blame for my resistance to change.

More than any life-changing moves from one state to another is the life-changing experience of being chronically ill, not being able to predict from one day, or even one moment to the next if I will have pain or be able to remain upright. In this area there are constnats - pain, fatigue, nausea, the inability to do "normal" things any other 24-year-old would be concentrating on. But in with these consants are the unpredicitibilities that accompany this life - wondering how a new treatment will affect me, if the pain will be worse or better tomorrow, if things will ever get better or if this is how my life will always be or, worse, if things will deteriorate further leaving me with even more problems.

There can be no planning for the future other than dreams which I cling to as if they were a security blanket. But this security blanket brings with it little real security, just the knowledge that my dreams are my own and no illness can take them away from me if I choose to hold on to them. Some dreams are now impossibilities. Some dreams are not impossibilities. Some are merely unlikely to become realities. And yet others, the new dreams, or old ones changed through the course of illness, can still come true with slow, hard work or a miracle. But that doesn't stop me from dreaming. This wasn't supposed to be about dreams.

When things are so unpredictible from chronic illness, there needs to be some kind of stability. Some constants other than those the illness brings. So being resistant to change becomes a way of staying sane in the midst of insanity and chaos. It's a way of creating a sense of safety when things could change in an instant an dleave you sicker...or worse. I'm not being overly dramatic, I'm being truthful.

So I cling to traditions that I can count on to be the same year in and year out. I get upset when peoiple leave, when places change, when my constants aren't things I can always count on being there. Who knows, maybe this is just how I am, maybe being moved at a young age created this in me, or maybe I can blame it all on being sick for so long. Whatever the reason, I'll cling to my safety nets and hope I don't get swept under by the waves of change.

Yours,
Penguini

Missing Boston

2006-08-17T19:47:00.000-05:00

I miss Boston, a surprising realization I made while immersed in a crowd of strangers on the T (that’s the subway for those who don’t know Boston). Even more surprising are the things I miss about Boston. I miss getting lost in a crowd on the busy downtown streets. I miss taking the T around (yes, it’s quite odd to actually miss public transportation – I must be weird or something). I miss hearing music drift through the open T doors while stopped at Park Street or South Station. I miss the hustle and bustle, and yes, even the sounds of traffic.

I walked from South Station down Summer Street and Winter Street eventually ending up at Boston Common, a wonderful bit of nature where, on a nice sunny warm day like today, many people can be found lounging on the grass, eating lunch on the park benches, or merely sitting and enjoying the nice weather and beautiful surroundings. Sure, it’s not the most beautiful place I’ve ever been. In fact it probably wouldn’t even make my list of top 10 most beautiful places, but there’s something about it. Maybe the liveliness of having so many people here. Maybe the coming together of the city and a touch of nature that is vacant in so many other areas of the city. I don’t’ know what it is, it just draws me in.

And while walking down Summer Street to get here, I stopped and got a slurpee (the 7-11 here had a different Crystal Light flavor – raspberry lemonade, a bit on the sweet side but a nice change from my usual tart passionfruit). I then came across a woman with a beautiful voice singing karaoke to accompaniment CDs. I stood and listened for a while. Things like that just can’t be found in rural, or even suburban, towns. And I miss it.

Okay, perhaps I don’t entirely miss the flocks of pigeons flying back and forth across the park, flapping only inches from my head. But I don’t really mind them. Perhaps I need to strive towards frequent visits to this part of Boston, not too far from school but far enough to prevent me from having a quick trip over here. I need to come to the commons, to the Aquarium to visit the penguins, to Faneuil Hall, to all those places in Boston I feel a yearning for. And perhaps I need to rethink my notion that I don’t like living in the city...

Yours,
Penguini

Disconnected

2006-08-01T12:25:00.000-05:00

I'm feeling disconnected from the world. I mean, more so than usual. Usually I spend my time how I want to when I'm not working in the office of the Art Center or teaching theater class or at art camp. I rest, watch TV, spend time visiting my friends online, run errands, all that kind of stuff that make up a lot of my life. And I feel connected then. I'm in my house with my family, I can hop in my car and go out to the store if I need something or just want to get away, I'm able to watch TV or DVDs when I want to, and more than anything I'm able to just be me - not another version of me, just me. I've discovered that while I may enjoy working with kids and babysitting isn't a bad way to make some money, I'm definitely not cut out for long term babysitting. I have been housesitting and babysitting for the M's since Thursday afternoon (approaching a week). The kids are 10 (Anne) and 13 (Rady) and while they're not really a handfull the way younger kids would be, they wear me out A LOT and just the fact that I can't just spend the afternoon in bed is exhausting. I feel like I'm living a life that isn't mine, which I guess I kind of am. I'm the surrogate mother for the week (until Sunday) while their real parents are in Europe with a group of friends (the trip was paid for by a friend - the M's aren't really rich). I have to wake up at a certain time every morning to give Rady his meds (he has ADD or ADHD) and keep waking him up to get in out of bed and dressed at a reasonable time. I have to attempt to get him to do something other than playing video games or watching TV (which is more or less a losing battle), and I have to spend even my free time being awake and upright and my role as the "responsible adult in charge" is exhausting.

But back to the disconnected feeling. This isn't my life. And I'm glad this isn't my life, I actually like my life pretty well. I like my house. I love my family. And I miss all that even though I'm only about 10 minutes away from home, if that. But regardless of all that, I feel like the world is out there, my "normal" life is out there, and I'm stuck here in the house taking care of these two kids who are fun to hang out with sometimes but, as most kids would, have a tendency to get on my nerves after a while (Rady more so than Anne). I mean, I know they're just kids and keep trying to remind myself of that, but when they (and my they I pretty much mean "he") doesn't listen to me (or worse pretends to listen to me but then doesn't do what I ask him) and I feel just about ready to rip my hair out, I just want to run screaming from the house and retreat back to my regular life. I guess in a way I'm spoiled because I have somewhat minimal responsibilities and for the most part I can do my own thing, even if it consists of resting in bed most of the time.

Their parents come back on Sunday afternoon/evening and I will be overjoyed to go back to my normal life. Crawl into my bed where kids won't lounge around and watch TV (yes, they seem to forget easily that I'm the one living in their parents' room this week and they need to be respectful of that - my pillow is in the washing machine as I type this because I came back from art camp to find it wet, and of course Rady has no idea how that happened). Pop in a DVD, turn on my air conditioner (yeah, did I mention that this house, while it stays pretty cool, isn't air conditioned?), and spend a few weeks recovering from this week of living someone else's life. I'll reconnect with the world and with myself. My time will be my own and I won't have to worry about making sure the kids brush their teeth or take showers or the dog gets walked (did I mention there's a big dog, too? I'm definitely not a dog person!) or everything else is taken care of. I want my life, with all of the bad and good stuff it entails. Because my life is my own and I want to be myself again.

Yours,
Penguini

There's a Commotion in the Ocean...

2006-07-11T16:51:00.000-05:00

I'm sure you all know what it's like to get a song stuck in your head. It's even worse when you can't remember the whole song and just have one or two lines repeating over and over in your head. Usually they're songs that you heard on the radio and (at least it seems to me) listening to the whole song helps to get it out of your head. Like you're able to let the song out of your head by listening to it. Well, today I have a song stuck in my head. Not a song I heard on the radio, much worse than that. It's a song that the kids at Art Camp (where I teach theater in the summers) will be singing as part of their performance on Thursday for the end of session one (of three) of camp.

The theme of this session of AC is "Under the Sea" and the music/stories/dance teacher at camp made up a song for the kids to sing at the end of the play. I'm not sure if the song has a name but here are the lyrics:

There's a commotion under the ocean
There's a party under the sea
There's a commotion under the ocean
And you're invited so come with me.

There's a commotion under the ocean
There's a party under the sea
There's a commotion under the ocean
And you're invited so come with me (oh, come with me).

Yeah, simple lyrics and I can definitely run through the whole song in my head (and outloud if I'm not worried about the people around me thinking I'm crazy) but no matter what I do I can't get it out of my head! It's starting to drive me a little crazy so I did a little search on why songs get stuck in our heads. Here's something I found.

Having songs "stuck in your head" happens to nearly all of us. Ninety-nine percent of study respondents said they have experienced the phenomenon. Almost 50 percent say that it occurs frequently.

Kellaris, an expert on the influences of music on consumers, reported preliminary results on his work last month at the Society for Consumer Psychology's winter conference. He has a sample of 1,000 respondents to work with in analyzing his theory that certain songs create a sort of "cognitive itch" - the mental equivalent of an itchy back.

"It is like the familiar pattern of itching and scratching," Kellaris says. "The only way to 'scratch' a cognitive itch is to rehearse the responsible tune mentally. The process may start involuntarily, as the brain detects an incongruity or something 'exceptional' in the musical stimulus. The ensuing mental repetition may exacerbate the 'itch,' such that the mental rehearsal becomes largely involuntary, and the individual feels trapped in a cycle or feedback loop."

Kellaris' research seeks to identify characteristics of music that make them memorable. His preliminary work points in three directions he believes play a role:

Repetition: One theme song that respondents reported as getting stuck in their heads often was "Mission: Impossible." Kellaris was not surprised. "A repeated phrase, motif or sequence might be suggestive of the very act of repetition itself, such that the brain echoes the pattern automatically as the musical information is processed," he says.

Musical simplicity: Simpler songs appear more likely to make your brain itch. Anyone who has ever had the misfortune of getting Barney's "I Love You, You Love Me" song stuck can attest to that. Generally, children's songs are more prone to getting stuck than classical music, Kellaris says.

Incongruity: When a song does something unexpected, it can also spark a cognitive itch. Examples include the irregular time signatures of Dave Brubeck's "Take Five" or the song "America" from West Side Story. Unpredictable melodic patterns or an unexpectedly articulated individual note can have the same impact.

Interesting, but unfortunately it doesn't really help me figure out how to get the song out of my head. Ho hum...I guess I'll just have to hope it somehow decides to leave...but somehow I have a feeling it will be in my head until at least Thursday when the play is and after which I won't have to hear it again and won't have as much of a chance of getting it re-stuck in my head.

Friends

2006-07-09T22:42:00.000-05:00

I wonder how many people only see some of their best friends for 3 or 4 days a year. I wonder how many people count among their best, closest friends people they've never seen in person (and some they've never even seen in pictures). People they only talk to online or very occasionally on the phone. I don't consider it weird because it's a good way to socialize when you're chronically ill. But they're not just any online friends, they are friends who understand just what it's like to deal with chronic illnesses. What it's like to go through life losing friends, not being able to get out to meet new people or socialize with old friends, to spend a great deal of your time in bed. When you live in a world where the phrase "You look great!" makes you groan because, although usually it's a GOOD thing to look good, looking good only means that we are even less understood, you count your blessings when you have people who completely understand what it's like to wish you looked as bad as you feel sometimes so people could really see what's going on on the inside.

I feel blessed and lucky to have quite a few great friends that I have only just met in person but have been talking to online for months (or longer in some cases). Some I met last year but only saw for a long weekend and then, although there were intentions to get together during the year, a year went by without being able to sit in the same room as them and just have a goofy evening together. I wish we all lived closer to each other or that we could all fly to a get together every month and spend a weekend together. But the country is big and plane tickets are expensive so we'll just have to settle for talking to each other online through e-mails and instant messenger.

Friendships built upon online chats late at night and shared medical experiences can be deep and long lasting. We have come together, met one another because we have shared experiences that most of us would not wish upon anyone else, but the simple fact that we have met because of what we have been through makes it easier to handle. Without having gone through painful and/or uncomfortable tests, without having spent days unable to stand for very long and each time we try to we end up horizontal again (one way or another), without spending time feeling alone and isolated we wouldn't have found each other. We wouldn't have these friends that stand by us during the bad times and share our laughter and smiles in the good times (or just laugh because it's 2am and we're way beyond tired). These people that I call my friends are different from me in many ways but we share more than we could ever put into words.

Yours,
Penguini

Think YOU can't make a difference?

2006-05-24T14:19:00.000-05:00

I think everyone needs to see this Sarah McLachlan video. The song is called "World on Fire" and, although I do like the song on its own, I don't think you can possibly get the full intent of it unless you see the video. It's really amazing.

Music Video Codes By HotGet.com

Yours,
Penguini

Bad Night

2006-05-23T04:50:00.000-05:00

Today is going to be a rough day. It's pretty easy to realize this right now, at 5:12 AM, by the simple fact that I am awake. It would be nice if I was awake for some exciting thing - like getting up to go off to the airport on a trip (which will be happening a week from tomorrow) - but that's not the case this morning (or night? it still feels like night). Tonight was a bad night. I got to sleep alright, albeit at about 2:00 AM, but around 3:00 AM (just an hour later?) I was woken up. First it seemed my bladder had done the waking up but within minutes it was clear that my bladder was not at the top of my list of concerns as horrible abdominal pain started up. Despite the horrible pain, I managed to get up, stumble around to grab my IV bag (figures I'd choose to do my infusion overnight tonight), and make my way to the bathroom to empty my bladder. That didn't help the pain at all but it at least took my mind off of that concern. The pain was horrible. I dealt with gallbladder attacks for about a month and a half before finally getting my gallbladder out in November 2002 and that's the worst pain I've ever had, at least during the worst attacks. This pain was as bad as that. I managed to grab my heating pad and get back into bed but couldn't manage to get any relief or find a position that would minimize the pain. Writhing around in bed at 3:00 AM is really not my idea of a "good" night.

Thankfully, after about 10 or 15 minutes of this (with questions flashing through my head, including wondering if I should a) wake my parents up and/or b) prepare myself for a visit to the ER) the pain started to subside and eventually got down to an okay level. With my heating pad still on my belly, I managed to drift off to sleep only to be woken up about 15 minutes later with round 2. I went through the same thing - writhing around in bed a bit, whimpering or moaning quietly, trying desparately to find a position that would help but not finding any relief. It lasted about the same amount of time as the first round of it and then subsided and I drifted off to sleep briefly again. And then, yep, you guessed it, round 3 started around 3:30 AM (or sometime near there - I wasn't keeping careful watch on the clock during all this). Same thing as rounds 1 and 2 but with each reoccurrance of the pain, I became more and more worried and came closer and closer to throwing up into my handy "barf bucket" that I keep by my bed (I've never actually thrown up into it, so it's not gross or anything).

By round 3, I decided that if it kept happening or if I started throwing up, I would have to wake up my parents and decide whether or not a trip to the ER would be necessary. Thankfully, it seems that things do come in three's as I haven't had a worsening of the pain since the third round let up. I've been awake since then, though, half worried the pain will come back and half wanting to look things up online to try to figure out WHAT could be causing the pain. At least back when I was having gallbladder attacks (or at least towards the end of when I was having them) I knew what was causing the pain (and earlier on could at least have a pretty good suspicion of what was going on since I was on an IV antibiotic that is known to cause gallstones). But this time around, I really don't know what could be causing the severe pain. The location of the pain isn't much help - pretty much in my upper abdomin but localized on either side of my belly button (but a little above it). I feel like, when the pain was happening, I could have drawn two circles of where the pain was, one on each side of my abdomin.

I was trying to run through the possible causes in my head - kidney problems seemed possible but that's mainly felt on the sides and in the back; I looked up information about the early signs of appendicitis but the kind of pain doesn't really fit (and I'd have to wait until it moved to be more localized in the lower right part of my abdomin before I'd be able to seriously consider this); it could be something in my bile duct since the pain is similar to my gallbladder attacks, but I don't know what would have caused that; or it could be something with my intestines which is likely since I now have an official diagnosis of a motility disorder (although my diagnosis is of gastroparesis which is focused on the stomach). Whatever it is (or was), it will most likely be the cause of a rough day ahead. Going on an hour of sleep for me is just setting me up for a huge crash.

Everytime something like this happens - when I have a rough night because of one symptom or another or when a new, bad symptom pops up - I wonder if it's a "normal" thing that I'm experiencing or if it has something to do with my myriad of health problems. Do "normal" (and by "normal" I mean "healthy") people sometimes wake up in the middle of the night with severe, intermittant abdominal pain? Would a "healthy" person head for the ER at the first sign of severe pain? Or would they wait it out like I did? Have my constant health problems made me less likely to seek medical attention when something bad starts up because I just think it's nothing, or will go away on its own, or just want to make sure it's really serious before heading for the hospital? I wonder, if I were "healthy" and I spent the night the way I spent this (last?) night, what would my response have been?

I guess when your life is more or less ruled by medical issues, diseases, treatments, and testing, you are changed in more ways than might be generally noticed. You're changed, not just in how you see the world or how you spend your days, but you view potentially bad (health) situations as something to just "wait and see" about. I'm rambling a bit now, but afterall it's 5:40 AM now and I'm going on an hour and a few winks of sleep. Perhaps it is time for me to try to get back to sleep for at least a little while. Hopefully the pain won't come back (although right now there's a low-level of pain, but it's managable) and the rest of my day won't be too bad. I fear that one bad night will have a domino effect and cause a bad week...or even longer. But for now I'll just focus on getting through the night...err...I just looked outside and it's officially morning - the sun is up - not something I was hoping to see today (dawn, that is) but perhaps it will be calming to experience this time of day once in a while.

Sleepily yours,
Penguini

Memories and Solitude

2006-05-12T14:35:00.000-05:00

When you reflect on your life so far, what stands out for you? What event jumps first into your mind? Do you look back at your life and smile or does it bring a tear (happy or sad) to your eye? Do the good memories stand out more than the bad ones? What do you see when you think about your childhood? Do you see happy days spent on family outings to the beach or to some amusement park? Do you remember the little things that have helped to make you who you are? Or do you see that you have become who you are IN SPITE of your past experiences?

Questions. Questions upon questions upon questions. I can't answer them for you, and perhaps I can't even answer all of them for myself. The past has a funny way of either blurring together into a big blob, maybe with certain days, trips, or experiences standing out and begging to be remembered clearly. But at the same time, past experiences have a way of sneaking back up on you. It may have been years since you went through a rough breakup with a significant other and you might think you're over it, but the memories have a tendency to pop into your mind when you're not expecting them. Maybe you're driving past a place that you used to go with your girl/boyfriend and start to remember the time you spent there. Or maybe you're just sitting around watching TV or reading and all of a sudden his/her face pops up into your mind. Taken off guard, you might smile and remember the good times with that person or you might start to feel your stomach turning, still raw from the hurt that that person caused you.

Memories are funny. The ones you want to escape from the most are often the ones that stay with you the longest and become the most vivid. And some of the memories that you want to keep with you forever, for whatever reason (the brain's selective memory?), become fuzzy and fade into the background. Can you remember playing with your siblings or friends when you were really young? Did you play dress-up or house or build forts in the backyard (or living room)? Can you remember your first day of school, whenever that might have been? Can you remember your first pet? Your first big vacation? The things your family used to do on the weekends? Are these happy memories?

Okay, enough questions. I'm not sure why all of this is coming out of me right now. I've had a million ideas for things to write pop up into my mind over the past few weeks and months but of course they tend to pop up when I don't have an opportunity to write down the idea so I'll remember it. I seem to do my best thinking while driving around. I guess it's because that's a quiet time for me without a TV or AIM or anything major to distract me and I'm able to really be with myself. Of course, there's always music on in the car (usually, sometimes it's a book on tape) so that's a bit of a distraction, but there aren't any major things to take my attention away from my thoughts. Maybe it would be good for me to spend some time everyday sitting quietly with some soft music in the background - no distraction from the TV or computer to get in the way - and see what's going on in my mind.

I suspect that would be good for all of us. To stop the hustle and bustle of everyday lives and just BE. Do we as Americans even know what it is to just BE? Be us, be with ourselves, be with the noises and sights that surroud us, be with nature, be with whatever is going on around us. We are shown that if we are not doing something every minute of every day, we are being lazy. There is always SOMETHING that needs to get done - the dishes, the laundry, that trip to the grocery store to pick up some things, the grass needs mowing, the cars need washing, etc. Don't let yourself succumb to this belief. Quiet time is not only okay, it's NECESSARY if we are ever to figure out who we are and what we need. We don't really NEED that new CD, or the new computer game, or the new fancy coffee maker. What we really NEED is ourselves - to know who that is and know that it is enough.

Let the memories that want to surface, surface. Let the memories that need to be worked through come up and out of us so that we can release them into the wind and let go of what makes our hearts ache. We all have some kind of heartache, we may just think it's not there because we never give ourselves the opportunity to let it come out. We stuff it deep down and bury it with other things. But repression can only work for so long, eventually the memories will come up and out and you may not have any control over it if it gets that bad.

So take some time today and tomorrow and the next day and next week and next month. Take some time to sit in a safe place and just BE with yourself. If you have pain that you have been ignoring, let it out and let the breeze carry it away. If you have good memories that need to be remembered to remind you of who you are and what you are capable of, let those come out and strengthen your heart and soul. Renew your energy. A mind that is cluttered with too much is not going to be able to handle the everyday difficulties without slowly causing more pain and frustration. Do not let the world decide who you are for you, figure it out for yourself and don't let anyone tell you that you aren't good enough when you are just you. Believe that you are enough. You don't need to transform yourself into someone else's ideal. And in becoming who you are, you will bloom into the flower that is inside you waiting to come out.

Yours always,
Penguini

Get an e-mail to let you know when I post!

2006-04-16T13:03:00.000-05:00

Just wanted to let you all know that you can sign up to receive an e-mail when I post something. It's a great way to make sure you don't miss anything!

join my Notify List and get email when I update my site:

Yours,
Penguini

Post-Doctor Thoughts: Learning How to Fly

2006-04-16T12:43:00.000-05:00

Since I wrote that long, heartfelt post about preparing for a new doctor's visit, I thought it only right that I write a "post new doctor's visit" entry.

All of those feelings I wrote about before - anxiety, apprehension, hopeful, optimistic, etc. - all of those feelings were mulling around in me the night before the appointment. Perhaps that contributed to the fact that I woke up in the middle of the night with horrible nausea and ended up throwing up the dry cereal I had eaten 5 hours earlier. (I don't believe food is still supposed to be sitting there in your stomach 5 hours after eating it! But then that just shows how much I needed the appointment with this GI doctor.) Anyway, the throwing up surprised me a bit but I recovered, got back to bed, and so far there hasn't been a repeat vomiting episode.

As my dad and I drove up through Boston and navigated our way around the tricky area around the hospital, all those feelings bubbled around but I was surprisingly calm about the whole situation. And that calmness helped me through the day, I think. My blood pressure, which is usually on the higher side when it's taken right after I've walked down the hall to the exam room, was on the lower side - either a sign that my nerves weren't on edge or that I was dehydrated, I'll choose to attribute it to the former. And then the moment of truth - the doctor walked in. (It sounds weird to refer to him as "the doctor"; like he's not a real person, somehow above humanity because he isn't referred to by a name, but I guess that's the power we give to our words as we choose them. I am certainly not of the belief that doctors are akin to gods, so I will refrain from referring to them as "the doctor" whenever possible.)

When Dr. R walked in, he sat down and went right on to talking about what he thinks is going on with me, or rather what the possibilities are, and then how we'll test for them and what we'll do about them if the tests show up the way he thinks they will. There was no need to discuss my medical history because I had been lucky enough to have the opportunity to e-mail with him before making the appointment so he knew my history and was able to have already thought things through and decided on a plan of attack. He knows what he's doing, he believes and listens to me (although there was little talking on my part, mostly listening to all he had to say and explain), and I feel confident that together we will get to the bottom of this. And he is not just focusing on my GI problems, but also looking for other things that could be going on to complicate my medical picture further and explain some things.

My weeks ahead will be filled with quite a few trips up to Boston for testing and follow up appointments. I will probably get to know some areas of the hospital pretty well by the time everything is said and done, and I'm not complaining about that. I've been waiting for tests and appointments like this for a long time and now I will push through and keep going until I have answers, a diagnosis, and a treatment plan. Whatever comes with all of this, I will take in stride and accept. Perhaps it won't be easy to accept things right away, but with time I know things will get easier to deal with and I will come to terms with everything. I have already done that for so many other areas of my life that I'm sure this area will be much the same.

Hot packs on my belly; a brain fog thickened by Phenergan (an anti-nausea med that just wipes me out); feeling like I will expel the contents of my stomach much of the time; nibbling on crackers and small bowls of soup; exploring the limits of my stomach and sometimes pushing a little too far. This is life right now, for better or for worse, and I really can't complain because I am here, I am able to eat something and drink pretty normally, I am able to push on and do the few things that mean a lot to me, I have a loving supportive family and extended family network (namely my church family and awesome online friends), and I now have three doctors who are trying to figure things out (my new PCP, my Lyme doctor, and my new GI). I have stacks of DVDs that I can watch to keep me occupied when I'm not feeling up to doing anything else, I have a laptop with wireless internet to keep me connected to the rest of the world, I have a good life.

Sure, it could be better. Sure, I could do without the pain and nausea and all of that. Sure, I could ask for more, but that won't change my current situation. I know things will get better, and I know things will be okay. And even if they don't get better, it will still be okay. Perhaps not the most powerful words or the easiest thing to come to terms with, but it's the truth and the more you say it, the easier it is to believe it.

I'm here for a reason, there's a purpose in all of this. How can I believe this with everything that I've been through? It's simple - I wouldn't be able to make it through all I've been through if I didn't believe this, if I felt that this was just the act of a malevolent greater power or just something random that has happened to me. When you quality of life lessens, your spirit must take up the slack and soar even higher. When you spend days in bed doing nothing but staring at the television or at the ceiling, it becomes much harder to look at the rest of the world and not feel slighted. It wasn't supposed to be like this! I had dreams, aspirations, life goals! But being sick doesn't destroy dreams, it may very well change them but at the same time it teaches you more than you could ever learn without being sick - that dreams, aspirations, goals are some of the most important things to hang on to. My wonderful friend Tara shared one of her favorite quotes by Langston Hughes with me a while ago and I find it so fitting - "Hold fast to dreams, for if dreams die, life is a broken winged bird that cannot fly." Indeed, our dreams give us wings but it is our own spirit and soul that must learn how to use them.

When you come to the end of all the light you know, and it's time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: Either you will be given something solid to stand on or you will be taught to fly. -Edward Teller

Yours always,
Penguini

New Doctors and Butterflies

2006-04-12T15:33:00.000-05:00

I have an appointment with a new doctor tomorrow. With every new doctor I see, thoughts race through my mind – will this be the last doctor I have to see and explain my complicated medical history to? Will this one be able to sort things out and help me, even if it’s only in a small way? As that appointment gets closer, I have a fluttering in my stomach. You know the kind I mean – that combination of excitement and apprehension, like the way you feel before the first day of school or before setting off on a trip by yourself for the first time. It’s that slightly nauseous feeling that makes you want to throw up and do a happy dance at the same time.

It may seem weird to be “happy” about going to see a new doctor. I don’t think you can truly understand the complexity of this feeling unless you have experienced it for yourself. Unless you have walked a mile in the shoes of someone with a chronic illness (or, in my case, multiple chronic illnesses). Perhaps through my writings you’ve been able to step into my shoes for a moment, or at least better understand what it is I and so many others with chronic health conditions go through everyday. That’s what I hope at least.

So as I think now about the doctor’s appointment tomorrow with a new gastroenterologist, I begin making lists in my head (and on paper because, let’s face it, my memory isn’t anything to brag about and thoughts don’t seem to nest there for very long before finding their way out and taking off for The Bahamas). I need to print off directions to the hospital – Mass General, a new experience for me to be seeing a doctor whose office is actually IN a hospital (and in Boston, I generally avoid Boston doctors because of their bad reputation with Lyme disease). I need to make sure I have a list of all my current doctors and one of all my current medications. I need to make notes about my history of gastrointestinal problems with as much information as possible about my current situation (mainly to help me get my thoughts in order so I won’t be totally lost during the appointment). I need to copy some of my medical records so he’ll have as much pertinent information as possible. Yes, organization really is necessary or else I’m sure I’d show up for the appointment in a dense brain fog and not be able to coherently talk about anything.

My experience of seeing new doctors for the first time is mixed at best. Sometimes I’ve been looking forward to an appointment for so long that I’ve built up grand expectations that only lead to me leaving the office in tears. That has thankfully only happened on one occasion that is worth remembering (with a certain Lyme disease doctor who I won’t go into details about). But there have been some other visits with new doctors that have given me renewed hope that things WILL get better. Expectations are dangerous things, and they’re difficult to keep in check. Because even if you tell yourself over and over that you shouldn’t expect much so as not to be disappointed, you always have high hopes that can easily be popped like a balloon.

So today I’ll make lists, organize everything the best I can, and hope that I don’t forget anything. And of course I will hope and pray that this appointment goes well and that this doctor will be able to figure things out. One of my biggest fears is to never be given a diagnosis, to be blamed for what’s going on, to be scolded for not forcing myself to eat even when I’m so nauseous I just WISH I’d throw up so I could get some relief. I don’t believe any of this will happen tomorrow, but I also don’t expect to have a real diagnosis on the first visit. I will need testing. And the more tests I have that come up normal, the more tests I’ll have to go through. Is it too optimistic to think that the first test will bring a diagnosis? Am I being unrealistic? I’m used to tests, and especially to tests that only show that there’s nothing wrong.

If you’ve never had a chronic or serious illness, you might not be able to understand the wish that something will come up abnormal. But for those of us who are dealing with health struggles everyday and deal with doctors who only look at our test results (all normal) and then dismiss us as having a psychosomatic illness, having a test show an abnormality can be like getting that pony you’ve always been waiting for. This may seem like a weird analogy, but when you think about it, it makes some sense (or maybe it only makes sense to me). I'll explain.

A pony is something you’ve always wanted, but with the pony comes unwanted complications and responsibilities – you have to clean out the barn or stall, you have to spend time brushing its hair, you have to take care of it. So while an abnormal test leading to a concrete diagnosis may seem like a wonderful present at first because it’s proof you’re not crazy, with the diagnosis comes new challenges – taking medications, dealing with side effects from the medications, dealing with new medications to combat the side effects from the first medications, doctors visits, long drives to see specialists, insurance frustrations, and the financial burden of it all. But still, in my opinion at least, it’s much better to have a diagnosis and be able to do something about it rather than wandering around from doctor to doctor with none of them knowing what’s wrong and all the while having to deal with horrible symptoms from the undiagnosed condition.

So I pray that tomorrow will bring some answers, although I fear at first it will only lead to more questions and of course to those dreaded but much needed tests. I wish I could have a clean slate, go back to the beginning of my illnesses and make different choices based on all the knowledge I’ve gained over the past 8+ years. (Wow, more than 8 years of being sick. I wish there was a time limit on how long you were allowed to be sick for, since I fear the year count will continue increasing for a long time to come.) If I had known then what I know now, I don’t know if I’d still be sick now. But, as they say, hindsight is 20/20. Ironically, my CURRENT sight is better than 20/20, although only slightly. I wish that worked for seeing life clearly.

For today, I’ll try to forget about the need for tomorrow’s appointment to go well and just concentrate on getting organized. At least if I can have SOMETHING organized, I feel like I’m not completely drowning in the messiness of everything. Hopefully the flutters in my stomach will subside (ironic that I’m having nausea and butterflies in my stomach as a result of thinking about the appointment with the GI doctor) and my mind will be able to quiet down enough tonight so I’ll be able to get a good night’s sleep and be somewhat well rested in the morning. And if not, I guess it’s not a bad thing for a doctor to see me feeling really sick.

“It’s all right to have butterflies in your stomach.
Just get them to fly in formation.”
--Dr. Rob Gilbert

Will I shatter or simply fade away...?

2006-03-06T19:15:00.000-05:00

The human body really is amazing. When you think about everything that has to work together for you to be able to go about your day, do the things you don't think twice about, it really is an amazing thing. But of course when everything is working correctly you usually don't think about how it all works, you just kind of know it works and maybe you appreciate it for working or maybe you don't think about it at all. Maybe you take it for granted, maybe you abuse your body by throwing alcohol and other substances into it without thinking about what it might be doing to your body. I'm not judging, not saying it's wrong to live life and use your body to the fullest. But what would you do if one day your body stopped working right?

It might not be anything major like a heart attack. It might not be anything you notice right away but something that sneaks up on you. And then before you know it, you live your life through a computer screen, days spent in bed with the covers pulled up tight and a space heater close by to keep the chills at bay. Something as simple and necessary as eating becomes a daily struggle - between waves of nausea you try to get in a few crackers or a bowl of jello. When you stand up, you have to brace yourself until the spots before your eyes and lightheadedness fade away and you know the danger of blacking out has passed. Your body is falling apart. And you wonder how you got here!?!

This life certainly wasn't the one you were headed for back when you would imagine the future when you were little. Or was it? Was this the life you were predestined for from before you were born? Do you even believe in destiny? Was there some choice you made, some path you went off on that has brought you to this point? And does fairness play any role in it all? Questions. Questions upon questions rolling around in your mind until there is no quiet. (And you wonder why you have insomnia!)

You watch people walking around and wonder if they ever think about how lucky they are to be able to walk around under their own power. You watch people sitting down for dinner, plates piled high with meat and pasta or rice and dessert not too far off, and you wonder if they see that there are people who rejoice on days when they are able to eat (and keep down) more than saltines and jello and add up more than 300 calories at the end of the day. You see people so preoccupied with their weight they are willing to do anything to lose a few pounds and you wonder if they realize that there are people struggling to get enough nutrition to keep the weight on and who dread seeing the scale drop down another pound or two. You see this all because it is your world, but to the rest of the world it's an alien language.

There are no easy answers, despite the need for them. There are no easy fixes, despite the desparate yearning for them. There are doctors who don't listen and friends and family who don't understand. There are people who will call you a hypochondriac, say you are faking it, tell you it's all in your head, or just plain ignore that there is anything wrong. There is no avoiding this. So you must not only endure the days of pain, fatigue, your body going out of whack and falling further and further down into a pit of malfunction, but you must also deal with these people and use the precious energy you have to try to educate them, reason with them, and help them understand what you are dealing with.

As you can feel your body slipping further downhill. The questions keep invading your restless mind - Could I have done something to prevent this? Is there something more I should be doing now? And as you feel yourself getting worse, you must now possibly deal with the awful process of convincing doctors that you really do know your body. (If you could only tell them the treatment you need and have them listen to you, the process would go a lot smoother.) You fight them, you fire doctors, you search for others, and all the while very few people seem to see the slipping your body is still doing. And the questions of course continue and cannot be answered yet - What will finally happen to make the doctors believe me? Pay attention? Do something? How far down can my body fall before I crash on something? And can a body in this disarray shatter or will I simply fade away...?

I see your true colors...

2006-02-08T11:41:00.000-05:00

When you live with a chronic illness 24/7, oftentimes your life doesn't feel like your life. Life for the most part doesn't become about what you want, what you'd like to do, what you choose. Instead, your body is in control most of the time. Waking up, the question isn't, "What would I like to do today?" It becomes, "How much energy do I have? What hurts? What is my body capable of doing today?" And many days there isn't even a question, there is simply a statement, "I have to stay in bed today." And many days revolve around trips to doctors - neurologists, gastroenterologists, primary care physicians, and a million other specialists whose appointments fill up the calendar. And in the midst of this predetermined life where you have so few real choices, a question pops up, "Who am I?"

This, of course, is one of the great questions that everyone asks themselves as they're growing up, becoming themselves, but for those growing up with a chronic illness it's different. A chronic illness has a way of becoming a blanket, a mask, taking over and becoming an identity that you never asked for. When you get sick before you've had a chance to create an identity for yourself, your left wondering how much of yourself is really you and how much is the illness. What would you be like if you weren’t sick? Would you still have this quirk or that silly habit? Who are you underneath the blanket this illness has placed on you?

All of these questions have been part of my thinking for a long time. I think for the most part I’ve given up figuring out who I’d be if I wasn’t sick because I’m not that person anymore - I’ll never be a person who was never sick. Instead, I have to try to dig down past the blanket and mask of chronic illness and find my true colors. So, the other day when I was watching TV and heard part of the song “True Colors” on a commercial I realized that this song really is a song for people with chronic illness. I had never listened to it this way before. So, here are the lyrics, here is a link to listen to the song (right click the song title and select "open in new window" so you can look at the lyrics while listening to the song). Take a minute to listen to it and hear what I hear when I listen to it now. Let your true colors shine!

True Colors

You with the sad eyes
Don't be discouraged
Oh I realize
It's hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small
But I see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow
Show me a smile then,
Don't be unhappy, can't remember
When I last saw you laughing
If this world makes you crazy
And you've taken all you can bear
You call me up
Because you know I'll be there
And I'll see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow

Yours,
Penguini

I see the world through different eyes...

2006-02-05T13:45:00.000-05:00

I see the world through different eyes. Some days my eyes are glazed over, making the world look foggy and blurred. The world doesn’t seem real. But what is “real”? Are you real? Am I real? This room? Are the flowers outside really flowers, or are they simply what I believe flowers should be? If I wanted to believe the sky was really red - I mean really, truly, deep down in the bottom of my heart believe the sky was red – could it be?

I see the world through a fog, through a tunnel. It’s like everything is distorted and nothing seems to quite be in the room with me. Everything is happening in some alternate universe that I have just tuned into on my TV, but the TV is in my brain. The TV channel doesn’t come in clearly but I’m just not able (or too lazy) to fix the antenna to make the channel come in cloudlessly. Occasionally the channel goes out completely and I’m left on my own for a while, with my own thoughts (if I happen to have any at the moment). And sometimes my thoughts take over and it doesn’t matter what is on the TV at the time, my brain shuts it off and takes over, going into overdrive, running through lists or examining past experiences. It seems I have no control over my own brain during these times, but I can gently try to bring it back to the television, turn it back on, and try to tune it back in the best I can.

Imagine seeing everything – people, places, events, the world, life, everything – through a fog, a cloud, a dirty lens. Imagine feeling like you’re never seeing things clearly. Like you’re never really experiencing things. Like you’re in a jumble of a dream that is your life and you don’t know how to make things clearer. Your television is missing that “clarity” knob and you can’t get things into focus. This isn’t the “normal” sense of lacking clarity that everyone except for the most enlightened experiences. This is in a class all its own. Part fatigue, part brain fog, part noodle soup, part orange Jello, part swiss cheese brain. All of this adds up to what it’s like to have a brain that just doesn’t seem to be “all there”.

I see the world through different eyes. Once in a blue moon (or more like a pink moon, if there’s such a thing, because I’m sure that’s less common) I have a moment where I can see things clearly, where the fog clears for an instant and I can see people and things the way they really are. It only lasts for an instant before things go back to the way they are, but it lasts long enough to give me a taste of how things could be and that’s enough to keep me fighting so that maybe, just maybe, someday I’ll have a whole life filled with moments like that.

Yours,
Penguini

The Invisible War

2006-02-02T01:20:00.000-05:00

I'm waging a war today. My eyes are bloodshot and sore but, no, they did not get that way from a long night of drinking (oh, how I wish they could have gotten their red tint from drinks). My head pounds. I feel every skipped heartbeat, breath catching in my throat and leaving me a little scared of what each little missed thump means. My cold hands and feet are buried under covers, exhaustion leaves every cell heavy. My stomach churns and threatens upheaval. Today blurs into yesterday and soon tomorrow will become part of that blur. The battle continues.

Perhaps it would be easier for you if my scars were visible. Perhaps you would find it easier if you could see my headache, if I could draw lightning bolts coming out of my forehead and temples. Maybe you could understand a little better if my cold hands and feet turned blue or if each skipped heartbeat could be seen on the outside. If I was bruised and battered on the outside the way I'm bruised and battered on the inside you wouldn't question my illness, how I'm feeling, my disabilities, this war.

I blend in, I look fine, I hide myself beneath this skin that has become a cloak and a mask. You can't see the battles, the battalions that I send out everyday in an attempt to fight an invisible enemy. You can't see the profound amount of energy it takes to do the simple things because so much goes towards fighting off the ever-advancing enemy lines. A shower is exhausting, a trip to the grocery store out of the question on all but my best days, and "pushing it" to go out and do more "fun" things leads to days or weeks in bed recuperating.

This is life. This is the invisible war that no one can see, but I can feel. I fight for myself. I fight for you, that person out there who supports me and cares that I'm here and brightening up the world in whatever small way I can. I fight for my friends, those amazing people who are there for me, even when they themselves are fighting their own wars and feeling as bad as I am (or worse) - they offer themselves unselfishly and I have become more a part of the world even as my body fades and seems to become less a part of it. I fight for life, because the alternative is to give up, and giving up is not an option.

Yours,
Penguini

A Day at the Amusement Park

2006-01-17T18:50:00.000-05:00

I have this image in my mind – all of us are at the amusement park. We’re all in line for tickets to go on the rides. Some people choose to go on the Merry-Go-Round, some choose the Sudden Plummet Drop, some get in line for the roller coaster that throws you upside down and leaves your neck slightly out of line from the rest of your body, and some people choose to play it safe and keep their feet on solid ground altogether. For the most part, everyone has a great time at the amusement park. The Sudden Plummet Drop provides just enough of a stomach lurch to make you bypass the next snack bar but you recover quickly enough not to think twice before jumping at a second ride on it; the games are a good balance of frustrating and satisfying and those big teddy bears are always just out of reach for most; the cotton candy is sweet and the hamburgers piled high with ketchup and pickles.

But for some of us at the amusement park, somehow we get stuck on the wrong ride. Our tickets were for the go carts, but somehow we ended up on the roller coaster – the one that twists and turns, plummets down a huge drop leaving you nauseous only to whip around a turn so fast that you’re not sure where you left your stomach. And just when you think the ride is over and you’ll finally come to a stop and have the straps holding you in loosened to let you out on solid ground again, you see that you’ve only come to another mountain to climb inevitably followed by another hill to go down. For a while you think the ride is just temporary and after a while you’ll be able to get off and go enjoy the rest of our day at the amusement park, go have your ride on the go carts, have your cotton candy, and win your stuffed animals (or at least try). But after a while you realize it’s not going to be that simple. This isn’t going to be a normal day at the park. So you start looking around for someone to help, someone to show your ticket to so you can prove you weren’t supposed to be on this ride at all and there has been some terrible mistake. But no one is there to listen to the mistake that has been made. And you panic.

Perhaps panic isn’t the right word. Panic implies that one knows something about what’s going on with the situation. In this case, it’s more like anxiety or fear of the unknown. You are alone on this roller coaster car, barreling along this track through twists and turns, ups and downs, with no idea where you’re going to end up or whether or not the next crook will bring the end of the journey or just another neck-cracking bend. You’re isolated on a ride you never signed up for and you don’t know what is happening. Can you imagine this? This is what it’s like to live with a chronic illness.

But slowly…very, very slowly…you begin to see another car in the distance ahead of you. It’s on a path just next to yours and isn’t going quite as fast as you are, as though it has found a little more of a steady pace but still isn’t quite sure of it’s path. As you approach the car, you can see that there is another person in the car, looking just as alone and confused and scared as you feel. Eventually you come up next to the other car and give the other passenger a friendly smile, trying to make you both feel a little more at ease. You have never met before but you both instantly know that you have been through the same thing so you have an understanding and without explaining you are able to comfort each other. You don’t feel so alone, but still neither of you has any idea where you will end up.

Over time, you meet up with more cars. That same understanding is shared, despite the fact that each of us have come from different lives before we decided to come to the amusement park that day. Each car is on its own track with different twists and turns and hills to climb, but along the way the tracks run close together so we don’t feel so alone as we go through them.

Fortunately, this is what it’s like to live with a chronic illness when you have friends who know. They understand. It's hard to find friends in your real life who know what you're going through, they are few and far between. But in the world of online groups, friends are as close as your computer. And without ever meeting them they understand what you're going through. They’re there during the hard times when the ride seems never-ending and nothing seems to be going right. They’re there when things finally start to look up and you can celebrate that the ride is becoming a little smoother. And eventually you may be able to get off the ride altogether and enjoy a nice day at the amusement park with these friends. Maybe the break won’t be forever; maybe just long enough to get that cotton candy and maybe grab a game of ring toss, but enough to remember that life isn’t always about preparing yourself for the next obstacle. And in the mean time, the twists and turns, the hills and valleys all seem a little less difficult to handle when you’re facing them with people who really know what it’s like.

Yours,
Penguini

We Shall Overcome

2006-01-09T21:18:00.000-05:00

On Sunday morning I was at church and had one of those moments where you just feel...something. There are different kinds of "somethings" you can experience during moments like this and I do have these moments fairly regularly, but they don't usually take me by surprise as much as this one did on Sunday. The service was our Martin Luther King Jr. service because our music director is going to be in New York City next Sunday when we would normally hold that service and the choir singing for this service is very important. The service itself was good but not especially moving, didn't have anything extra special about it. Sunday was our accompanist's weekend off so the music director, Jeannie, (who usually doesn't play the piano, too, although she's a really good pianist) was also the accompanist for all the hymns and other music. Since the service was in honor of Martin Luther King Jr. she chose hymns from that time to use for the prelude, offertory, and postlude.

When we came to the postlude - We Shall Overcome - Jeannie asked the congregation to join her and sing along. So we started singing, and then slowly we all stood up. I'm not sure who initiated it but everyone in the congregation started holding hands and swaying back and forth. Now this might all sound kind of corny, but I assure you it wasn't as corny as it sounds. And bear with me, I'm getting to that "something" moment. So we were all standing there, holding hands, singing this song that was written during a time when so many people were being persecuted, discriminated against, and fighting for equality and freedom. I wasn't unmoved by all this, but it was when we got to the third verse and I really thought about what I was singing that it hit me.

We shall all be free
We shall all be free
We shall all be free someday
I don't want this to be taken wrong. The original meaning behind the song is very powerful and the social rights movement was a very important part of history that I think we all need to remember and still work towards the ideal world MLK had in mind. With all that said, when we were singing the song and got to this verse about being free, all I could think about was how this song could be applied to my life and the lives of everyone else fighting illness, fighting to be free from the prison that their own bodies have become, fighting to live normal lives.

We are not afraid
We are not afraid
We are not afraid someday
We are fighting invisible (or at least microscopic or unseen) enemies that are within our own bodies. We feel betrayed by the very thing that is supposed to nourish and sustain us. Our lives have been turned upside down. And just when we've attached suction cups to everything and learned to live on the ceiling, everything gets turned over again and the world goes topsy turvy leaving us to figure out what to try next. We try humor. We try indifference. We try pushing through until our bodies scream out that it just can't take anymore.

We are not alone
We are not alone
We are not alone someday
But in the end, we just keep going on with our lives. We do what we have to do - take days (or weekends, or weeks, or months) to rest in bed; spend hours and hours hooked up to IVs; travel hundreds of miles every month to various doctors; take handfulls of pills that help us function and may or may not keep working. Our friends may wonder what has happened to us when we seem to drop off the face of the earth for months only to pop up looking like we're doing fine, but they didn't see us during those months when we didn't leave the house. And they don't see the screaming headache or the cloud hanging over our heads - these things are just invisible.

We shall overcome
We shall overcome
We shall overcome someday
So all this was going through my head at church as I was standing there singing this song. And the heaviness of everything hit me. I'm a master at repressing things, but every once in a while everything comes up in waves and the reality hits me. Sometimes I can predict when it will happen, and sometimes I can't. I certainly wasn't expecting this hymn at church to be a trigger.

Deep in our hearts
We still believe
That we shall overcome someday

Yours,
Penguini

Oz, winter, and everything else

2005-12-09T17:05:00.000-05:00

On today's agenda:

The Wizard of Oz (and how my worries are usually unfounded)
When it rains it pours, and when it snows...
I hate colds!
Unravelling the mystery that is my health
Computer viruses suck!

The Wizard of Oz (and how my worries are usually unfounded)

So my last post about the worries of talking to Michele about the kid who was having problems with her yelling...yeah, that post was full of worries that didn't need to be worried about. I talked to Michele about it that night and she was so sorry to hear that he was so upset. She talked to him and it was fine (at least as far as I know). The kids did a great job with the play which Michele and I were both surprised about (after a disasterous dress rehearsal, and no good rehearsals...ever) and I'm just so impressed with their ability to pull it together. So, all's well that ends well!

When it rains it pours, and when it snows...

Yep, it's officially winter here in the northeast. We've had a few smallish snowfalls so far and today we are having a bit of a storm with winds and lots of snow (with some rain during the day but it's back to snow now) and it just looks like a mess out there. But I'm all snug in my bed after getting out of working today (see the next section of this entry for a further explanation of why) and I'm glad I don't have to brave the "real" world today. And I'm sure my little car is very thankful, too!

I hate colds!

Yep, I have a cold. That no-fun-stuffy-nose-coughing-headache-tired-sore-throat-yucky feeling that can only mean that your immune system is being pummelled by a foreign virus. Now I don't usually catch every cold and flu that goes around which on the surface seems weird since I have a chronic illness but Lyme is weird in that your immune system is depressed in some areas but very active in others which means less colds. BUT, for me it means that when I get a cold or the flu I stay sick for a very long time - usually a few months. So this will be a fun holiday season for me! I'm already getting a lot of vitamin C in my daily IV hydration (not to mention the hydration itself) so hopefully that will help me get over it faster!

Unravelling the mystery that is my health

Okay, so I don't usually like to concentrate on health stuff on here, that's what my Lyme journal is for, but this seemed like a general topic to write about here. Apparently my health is a bit of a mystery. That's not really anything new, I've known for quite a while that there's a lot of hit or misses and trial and error involved in trying to figure out the mysteries and figure out what can be done. The latest things are a) I apparently have decreased hearing in both ears, but mostly in my right ear (although I'm not convinced it's my ears since their little tester seemed a little...broken) and b) my physiatrist (and now my primary care doctor) wants me to have a sleep study done to make sure I don't have sleep apnea or anything like that that could be contributing to my intense fatigue. So I have a sleep study scheduled for Tuesday night, that should be fun (note the sarcasm). I'm interested to see if it shows anything.

Computer viruses suck!

I have some unknown virus-type-thing on my computer that I can't seem to get rid of not matter how many times I run McAfee or try to figure out where the problem is. I'll keep trying to fix it and maybe at some point I'll get my brother to look at my computer and try to figure it out. Right now there are basically only two annoying things happening: 1) Pop-ups happening a lot, mostly with Netscape and 2) when I restart my computer, the quick-launch menu on the bottom lefthand side of the screen goes away because for some reason the box that says "Show Quick Launch" gets unchecked. Hopefully this will resolve but maybe it has to run its course like my human virus!

Early Morning Worries

2005-12-02T07:00:00.000-05:00

It's 6:44am. I woke up and now I can't get back to sleep because I have some things on my mind. I thought maybe if I write them out, I'll be able to get them out of my head long enough for me to get the hour and 15 minutes of sleep I can manage before having to get up to do my morning antibiotic infusion.

So, what's on my mind is this: I'm co-directing "The Wizard of Oz" with the Young People's Theater program at the Marion Art Center where I work (I teach theater and work in the office). The play has has it stresses, the kids don't know all their lines, and the show opens tonight (with a second show tomorrow). But it's not the kids that are on my mind this morning, it's my co-director/teacher Michele. She's a great person, we get along well when we're not teaching (and seem to get along fine when we are teaching) but we have very different teaching styles and the clash between them is starting to become apparent. She is a second grade teacher and you'd think she'd be patient and easy going but that's not the case. She has a tendency to yell at the kids, and often it's for little things.

Here's the "for instance" that's on my mind this morning. Last night when I got home from rehearsal I got a call from the mother of the boy playing the Tinman (Jacob). She was calling to say she could help out backstage tomorrow and to find out what we'd need her to do, and also to let me know that Jacob came home upset last night (and apparently it wasn't the first time) because the other director had yelled at him a few times. The first time she yelled at him was because he had taken home his funnel hat to put a strap on it (there wasn't anything on it to hold it on his head before) and he had forgotten it at home. He was telling this to me and I was going to say it was okay, just to make sure to have it tomorrow (and even if he didn't have it for the show, it wouldn't have been the end of the world) but Michele was standing nearby and heard what he told me and she yelled at him saying it wasn't alright (this was before I'd had a chance to say anything) and that he needed to bring it to rehearsal and that opening night isn't the time to be wearing it for the first time (which is partially our fault for not putting a strap on it ourselves sooner) and that he should call home and try to get them to bring it. He lives about 20 minutes away so that didn't seem like a good possibility but he called home. A few minutes later, he told me he had tried calling home and no one could bring it so I told him it wasn't a big deal, don't worry about it, and that Michele shouldn't have yelled at him.

Later on (towards the end of the run through), he was obviously tired (he was very sick towards the beginning of the week and missed some school so he's still recovering from that and having to make up school work on top of extra rehearsals) and not feeling so great and his costume is very uncomfortable so he wasn't speaking very loudly and obviously wasn't as sure of his lines as he was earlier in the play (so he should go over them before the show). Well, Michele yelled at him again, telling him he has to stay in character and speak louder, etc. This was in front of everyone who was backstage and anyone sitting out in the audience watching the end of the run through.

So, anyway, he was upset about this and apparently this wasn't the first time Michele yelled at him and he went home upset. He thinks she hates him and it just breaks my heart because he's a great kid and obviously doing the best he can after a bad week. So, when I talked to his mom I reassured her that he's doing a good job and that I will talk to Michele before the show tonight and have her talk to Jacob and try to smooth things over. So I've been thinking about Jacob and feeling rotten that he's upset over this because no kid should feel upset from a theater class that's supposed to be fun. And I'm worrying about talking to Michele about it and what her reaction might be. I think she'll understand and talk to Jacob and smooth things over, but I'm worried that she'll be stubborn and say that he wasn't doing what he was supposed to do.

Michele is my friend and I want to keep it that way, but I don't want to work with her co-directing/teaching theater classes and plays anymore because I need to be able to be laid back and not have someone else yelling at the kids for little things. I want the kids to have fun, first and foremost, and I want to make sure that they're not home giving themselves ulcers over situations that were blown out of proportion by one of the people who is supposed to be "in charge". My stomach turns at the idea of a kid thinking that one of his teachers hates him and I just want to smooth this all over now so I can ease my mind.

Well, it's almost 7:00am now so I better try to return to sleep for a little while or I'll be in even worse shape in the morning. I just hope everything works out alright at the show. I may call Michele later today and leave a message for her letting her know what's going on so she will have an idea of it. And I really hope this will be a wake-up call for her that she really shouldn't yell at the kids.

Always,
Penguini

Randomness

2005-11-01T11:32:00.000-05:00

So I don't really have anything in particular I want to write about today, I just felt like writing so this will probably be pretty random. On today's random agenda:

My Brain is Jello
BJs Wholesale Club
"Fall"ing Behind - Gotta Love It!
Where have all the trick-or-treaters gone?
Nausea, Headaches, and the Joys of New Medicine

My Brain is Jello

Yes, my brain is no longer a regular functioning brain. Or I should say it doesn't feel like a regular functioning brain. Instead I swear my brain has been replaced with Jello. And not just any Jello, it's orange Jello. I'm not sure how I'm so sure it's orange since I've never gotten a good look at my own Jello-brain, but it feels like it's orange. I guess orange Jello isn't that bad for a brain. My friend, Heather, only has soup for her brain! Noodle soup! Mmmmm...noodle soup. (After I wrote that last sentence, I realized that's a line from a Friends episode! Funny how it creeps into my head without even realizing it!)

BJs Wholesale Club

In my opinion, BJs is one of the best stores on earth. Okay, maybe I'm a little weird and I'm sure that's an exaggeration - afterall there are plenty of stores I'd choose over BJs if I could choose any store on earth - but it's a pretty darn good store. And the best things they have there are big variety cases of gatorade in the three flavors I like best (fruit punch, orange, and lemon lime), big variety cases of propel in my two favorite flavors and one I can tolerate (grape, kiwi strawberry, and berry is the one I can tolerate), and huge bags of chex mix. Am I a dysautonomiac or what!?! The only down sides of BJs is that, since everything is so much bigger, the store is a lot bigger and the carts are a lot bigger which makes getting around when you're not feeling well a bit of a challenge. But, I can manage to get around in order to get my staples to last me for a few weeks! I get to take a trip there tonight to replenish my supplies as well as get a lot of the food for the Lyme Out Retreat that starts on Thursday. Yikes! Lots to do for that!

"Fall"ing Behind - Gotta Love It!

I love the time change in the fall. That's all I need to say. Extra hour of sleep is good, especially when you have to be up at 8:30 to go to church for choir rehearsal!

Where have all the trick-or-treaters gone?

So last night was Halloween, as I'm sure most of you realized. How many trick-or-treaters did you have? 20? 30? Maybe even 40 or 50? Well, can you guess how many trick-or-treaters we had? None. Zero. Zip. Nada. My mom bought lots of candy, had it in a big bowl, had decorations out, and we had no trick-or-treaters. Usually we only have a handfull, at least the kids from across the street, but this year we didn't even have them (my theory is that they ditched our boring neighborhood to go somewhere else with their friends). Oh well, I bagged up some of the candy for myself and my parents and brother and sister will chip away at the rest of it. I just wish my throat and tummy felt up to eating more candy! (Although I shouldn't be having that much sugar at a time, so maybe it's a blessing I'm not feeling like eating much!) And that brings me to...

Nausea, Headaches, and the Joys of New Medicine

Okay, so if you don't read My Lyme Journal, you probably don't know that I just switched IV antibiotics. I was on IV Clindamycin from July 11th until last Friday (October 28th). The Clinda mostly just made me feel worse. So, at my last LLMD (Lyme Literate Medical Doctor) appointment, we decided to switch me from the Clinda to another IV antibiotic, Primaxin. We weren't sure how long it would take to get my insurance company to approve it. After a week of not hearing from my infusion company, I called them on Friday and asked what was up. They said they had been calling my insurance company but hadn't gotten an answer about the approval. So, to my great surprise I got a call from Steve at Coram, my infusion company, saying that the Primaxin had been approved and I would be starting it that night! I got the delivery of the supplies and one of my nurses came out last night and I started the Primaxin. I'll be dosing it three times a day, which will be a big pain (no more long night's sleep), but I'm just so glad it's getting covered and everything.

So, I spent my Halloween night learning about my new medication and chatting with my nurse. And, oh yeah, feeling sick. This medicine is going to be rough - nausea and headaches seem to accompany every infusion and it's going to make it difficult to get my other medications in around the pukey feeling. I'll manage somehow, I guess. You know that orange Jello that is my brain? Well I have some orange and some green Jello in my fridge that will become a staple food for me over the next few weeks as I get my Zofran and Primaxin schedule down. Is it weird to be eating the same thing my brain is made out of? Hopefully I'll get the schedule down pretty well and be able to avoid some of the nausea but if the oral Zofran doesn't cut it it's possible my LLMD will prescribe IV Zofran, which he did for a friend of mine. We'll see how the next few weeks go!

Well, that's all my randomness for today. Hope you enjoyed it!

Yours,
Penguini

Penguin Paradox

2005-10-15T11:13:00.000-05:00

Penguin paradox
From The Boston Globe
By Ellen Goodman | October 14, 2005

I WAS A BIT late getting my ticket to Antarctica, so I missed the first flight of controversy over the ''March of the Penguins." I am still trying to figure out how the sleeper hit of the season, an astonishing documentary about the life and times of the emperor penguin, turned into another case study in the culture wars.

First, the right claimed the penguins as paragons of family values. The editor of National Review actually praised them as ''the really ideal example of monogamy." Then a popular religious magazine suggested that the 3-foot-tall birds made a pretty strong case for ''intelligent design."

Alas, in the family values department, the penguin profile is a little mixed. The emperors and empresses are monogamous for a year before they turn with equal devotion to the next partner. Let's also remember the two male penguins in a New York zoo who famously raised one donated egg. And the fact that when the two dads lost their home, they broke up and one went straight.

As for intelligent design, penguin males balance an egg on their feet through months of an Antarctic winter. If that is intelligent design, the Big Guy has quite the sense of humor. Under natural selection, at least they would have a shot at evolving a lifestyle that doesn't require 70-mile marches to and from the food supply.

Still, this anthropomorphic battle has me waddling all over the terrain where science is a fighting word.

In the Grand Canyon, for example, you can actually sign up for ''alternative" rafting trips. One paddles with geology and sees a space created over 550 million years by shifting faults. Another looks through what the leader calls ''biblical glasses" and sees a place carved 4,500 years ago by the Flood.

In the lab, scientists who put evolution through its paces have just completed mapping the chimpanzee genome that is only 4 percent different from our own. Yet on the day I Googled this news, it was located on a website with a sponsor ad for the opposition: ''Evolution vs. Christianity. Uncomplicated Bible Answers."

This is nothing compared to struggles in the courtroom in Dover, Pa., where the trek of expert witnesses is lasting longer than the march of the penguins. There, a judge is being asked to decide whether the school board can force biology teachers to read a disclaimer on evolution that offers intelligent design as an alternative.

There's now little doubt that the school board members saw ''intelligent design" as a way to get religion into science class. Nor is there much doubt that intelligent design is just gussied-up creationism.

As Brown University's Kenneth Miller said in the courtroom, '' 'intelligent design' is not a testable theory in any sense, and as such it is not accepted by the scientific community." It isn't science. Yet two-thirds of Americans think we should ''teach the controversy."

All in all, most scientists believe that teaching ''intelligent design" as an alternative to evolution is like teaching the flat-Earth theory as an alternative to the round. But as science pollster Jon Miller of Northwestern will tell you, one in every five Americans believes the sun revolves around the Earth.

For those of us who would ''teach the controversy" in the science class where it belongs -- political science -- the sorry part is that the creationists set up a false dichotomy between science and religion. They also create a false portrait of our place in the universe.

In one of Miller's recent surveys, 75 percent of people agreed that animals adapted and evolved over time. But 65 percent believed that humans were created as whole persons by God and didn't evolve. The root of the conflict, says Miller, ''is the human exclusiveness, the desire for humans to be unique."

Many who seem quite capable of anthropomorphizing a 3-foot creature are unwilling to see themselves as part of the same tree of life. They are perfectly willing to believe that we are little lower than the angels, but reluctant to believe that we're little higher than the apes.

I suspect we'll look back with astonishment to a time when both the president of the United States and the Senate majority leader -- a doctor -- wanted the pseudo taught with the science. But some of the greatest issues of our time -- from stem cells to global warming -- depend on scientific understanding. And that's an understanding easily sacrificed in the culture wars.

When the right wing made the penguin their paragon, a Hollywood producer sighed, ''they're just birds." Beware. Now, the same filmmakers are working on a new movie about the relationship between a young girl and a fox. I don't even want to think about it.

Ellen Goodman's e-mail address is ellengoodman@globe.com.

© Copyright 2005 The New York Times Company

I have a dream...

2005-10-10T18:30:00.000-05:00

Okay, so I have a few dreams really. And they're not the same kinds of dreams that MLK had of everyone getting along. Don't get me wrong, that dream is still alive inside me somewhere, but those aren't the kind of dreams I want to talk about here. My dream has to do with helping other people, especially young people, handle the unfortunate things that life throws at them. Not just the "normal" unfortunate things, but the kinds of things that change a life so completely that it's never the same. The kinds of things that leave you incapacitated, feeling "left behind" by your friends...and the "real" world.

For those of you who don't know me and either stumbled upon this blog by accident or are just starting to learn about my life, here's a quick bit of background. I have been dealing with chronic Lyme disease since I was 15, a time in my life when I was supposed to be stretching my wings and becoming more independent. I have been on and off treatment since then and dealt with all the ups and downs of that. Oral treatment is easy enough to deal with, but when the treatment turns to intravenous antibiotics it's a little more noticible that something is wrong. It's tricky to try to hide a PICC line in your arm and hard to have to tell people that you can't go out at night because you have to infuse at a certain time. Now at 23 I am still in the midst of the nightmare, most of my "healthy" friends off living their lives and I'm usually not up to hanging out with the few who are still around.

So, I find little ways of keeping up my spirits and making my world of medical supplies more fun and light-hearted. I've named all my medical stuff: my port-a-cath is Winnie the Port, my portable IV pump is Eeyore, and my three IV poles are Piglet, Edgar IV (Edgar the forth), and Roland Polansky (Roly Poly for short - that's my pole with wheels). Now that it's getting around to Halloween, I decoraged my poles with Halloween and fall stickers and other fallish things. I have plans to put tinsel and/or Christmas lights on the poles when it gets to be closer to the winter holidays and I like to decorate my room appropriately for the season because I spend so much time resting in bed or in my comfy chair.

Okay, enough background info on me, now for my dream. Since it generally sucks to be sick, whether in or out of the hospital, and have to be surrounded by medical stuff, I would really like to help cheer up others who are dealing with things similar to what I am. My dream is to put together a program to provide little care packages to kids and teenagers with things for them to decorate IV poles with (stickers, string lights, hanging ornaments, etc.), Vetrap (if the patient has a PICC line or peripheral IV line), a special stuffed animal, and maybe a blanket to help make them more comfortable. It would also include arts and crafts supplies so they could make their own decorations for their medical equiptment and hospital room or bedroom. Anything to help make things feel a little less intimidating and a little more fun!

This dream is part of a larger one: to start a non-profit organization to help people with Lyme disease. Through this non-profit I would continue organizing and running the retreats that I have been running for the past year, organize and run support group(s), go out and give informational sessions/presentations about Lyme disease, and any number of other things that have been growing in my head for the past few years. Each dream is achievable, but each requires a good deal of work and it's rough to try to get anywhere when the dreamer is herself sick and has very limited energy. But as long as I continue to dream about them and formulate plans I believe that one day my dreams will become reality.

Now you know my dreams. What are yours?...

Yours,
Penguini

"Did I just hallucinate that conversation?"

2005-09-19T12:58:00.000-05:00

Okay, so if you have a chronic illness that affects your head and thinking you'll probably relate to this to some extent. If you don't have a chronic illness that affects your head and thinking...well...you might find this completely weird and at least mildly entertaining.

So on Saturday I went to Providence to spend the afternoon visiting with two Lyme friends from the last Lyme Out Retreat, Barb and Jack. They're great people and it's amazing how comfortable we are around each other (or at least how comfortable I feel around them) after only spending a long weekend together at the retreat. We talked a lot during the time I was there (about 5 hours), a lot about Lyme, which was really nice (there's something to be said about being able to discuss past Lyme doctors with someone who has been to a lot of the same ones!), and some about other stuff. We went out to lunch where I ate too much (which for me right now is an egg, a few homefries, and a piece of toast) and later went out to Pastiche, a pastry shop that has really good sweets - I got a lemon mousse cake, very light and delicious.

It was at Pastiche, over our coffee, tea, and pastries that we started having some weird conversations. Conversations that, if overheard would make very little sense and seem completely idiotic. But conversations that make you laugh uncontrollably if you're a part of them and realize how completely insane and stupid they are, but still necessary and potentially able to turn a bad day around.

I believe we were talking about doctors (as we had been talking about a lot throughout the day) and Jack asked how Dr. Bock spells his last name. He guessed "Bach" but I told him there's another Lyme doctor in Pennsylvania who spells it that way but my Dr. Bock spells it "Bock". Then we got off on a tangent about how Jack thinks it would be cool to have Bach as your last name and then use your initials instead of your first and middle names - as in J.S. Bach (the composer). Yeah, so far the conversation doesn't seem that weird but bear with me.

Then Jack wanted to figure out how many possible combinations of two initials there could be. So, we turned to Barb (who was a math major in college) to help us figure out the formula, I whipped out my cell phone (it has a calculator on it) to multiply it out and got the result - 676. Then we had to figure out what it would be to get rid of duplicates of the same initials (as in J.J. vs. J.J. - or J1. J2. vs. J2. J1.) and came out with 650, a nice round(ish) number.

When we had figured all this out we took a second to think about it and realized how completely silly the whole conversation had been. That's when Barb came out with one of the best phrases I've heard in a while, "Did I just hallucinate that conversation?" Maybe it doesn't seem that funny to someone reading this, but you have to understand that we were in the middle of a pastry shop (a sit-down pastry shop, but still a pastry shop) trying to figure out all the possible combinations of initials to go with the last name Bach! It seemed hilarious at the time. And the idea that it was so ridiculous that Barb thought it could have been hallucinated just made it all the more funny!

The rest of the day there visiting with them was great and there were a lot of laughs - and we all know that laughter is the best medicine! "[Humanity] has unquestionably one really effective weapon—laughter. Power, money, persuasion, supplication, persecution—these can lift at a colossal humbug—push it a little—weaken it a little, century by century; but only laughter can blow it to rags and atoms at a blast. Against the assault of laughter nothing can stand." --Mark Twain, The Mysterious Stranger

If you've made it this far and still don't think it was funny, I'll leave you with a comic that you may find a little funnier.

Yours,
Penguini

Penguin Logic

2005-09-15T21:17:00.000-05:00

I just had to post this:

Yours,
Penguini

A Trilogy

2005-09-14T21:47:00.000-05:00

On today's agenda:
Swiss Cheese Anyone?
Is there a sign on my back?
Penguins can fly!!!

Swiss Cheese Anyone?

If any of you know what it's like to deal with a chronic illness that affects your brain capacity, you might find this analogy especially meaningful. My friend, Stacey, and I are fairly silly when we talk online and we have come to refer to our lack of thinking capacity as "Swiss Cheese Brain". Some like to call it brain fog, some call it short term memory loss. Call it what you will, to me the swiss cheese analogy makes a lot of sense - I know the information used to be there in my brain somewhere, it just seems to have had a hole poked through it and it just isn't there to be accessed anymore. (Alternatively, it can also be called "Spongebob Squarepants Brain" but I prefer the cheese because there's just something about picturing a cartoon character living in my brain that just doesn't sit that well with me.)

Anyway, now that I've explained all that I can go on to talk a bit about my trip to visit the swiss cheese brain co-creator, Stacey. She lives in upstate New York (near Ithaca, which is where Cornell University is - where both my parents went to college), a very rural town with lots of cows and fields and farms so it's a different kind of rural from my town which doesn't have that many animals but a lot of cranberry bogs instead. I visited Stacey and her mom (and her brother, although I didn't see him much) from Thursday to Tuesday and even though I didn't do much at all during that time I got very worn out and I need to spend the rest of the week recovering from it. Most of the weekend was spent lying around on the couch in their living room watching the limited number of TV channels they have, Friends DVDs (that I brought), or talking to Stacey and/or her mom.

Stacey also has Lyme and NCS (dysautonomia - autonomic nervous system dysfunction), she sees the same doctor as me (which is how I got to her house - we both had appointments on Thursday so I just went home with her), and she and her mom are very understanding about everything. It's so nice to have a good friend like that who has been through so many of the same things as me. I spent a lot of time sitting up and talking to her mom (because Stacey was doing pretty well and was off with friends some of the time) about all kinds of things. Among the topics was very often discussions about my less than desirable outcome of my doctor's appointment on Thursday which made it easier to deal with. (If you want to read about my doctor's appointment, go to my caringbridge site and click on "journal history" at the bottom - it's in an entry from Saturday September 10th.) All in all, it was a good weekend.

Is there a sign on my back?

Okay, for some reason I feel like I attract guys that are either really annoying or really creepy (bordering on stalkerish). I won't name names but I want to talk about my latest experience with one of these guys. Over the weekend at Stacey's I met her boyfriend, Austin. He's nice enough (although only 17 so I felt like I was really old around him - Stacey is 20) and it was fine hanging out with him a little bit. On Sunday we hung out with Austin and two of his friends, Rob and...well, someone else (there comes the aforementioned swiss cheese brain). Rob is the one who I swear was flirting with me for most of the day. It was okay at first, but before long it became apparent that either he was just trying too hard or he's inherently an annoying person.

His idea of ways to impress me included: making up Shakespeare-like passages, speaking in fake foreign accents, speaking Japanese, trying to get everyone else to stop swearing around me, and then when I said I really didn't care if they swore (and really don't like people thinking they have to tiptoe around me) he started swearing loudly in the car. If it weren't for the fact that he was very obviously trying to show off and thinks he's the greatest person these things wouldn't have bothered me as much. But one of the biggest things I hate is someone trying to casually show off how great they are and how much they know. Needless to say, after a whole afternoon of being around him I was ready to get away.

So, seriously, do I have a sign on my back that says I only want guys to flirt with me who are really annoying or in some way just not "normal" (or at least not normal enough for me to like them). It has now been about 2 1/2 years since my last relationship and it would certainly be nice to meet someone who wasn't a stalker, excessively annoying, or someone who doesn't like me back. Someday...

Penguins can fly!!!

Yes, it has now been discovered that penguins can fly!!! Of course, they have to be in an airplane. So, this penguin flew home from New York yesterday and not only was I a flying penguin, I turned into a green flying penguin. The flights weren't that bad, but it seemed that flying coupled with not eating much (or maybe eating too much) didn't agree with my stomach and I wound up being pretty nauseous. I managed through the flights and was trying to keep drinking a lot and took Zofran as much as possible, and kept my bottle of vomitusheel (homeopathic nausea med) in my hand for most of the flights so I was still in one piece when I got off the plane. I was pretty dizzy and faint but I recovered.

Not only was I a penguin before I got on the plane, but I turned into more of a penguin during the flights. Or at least my feet did. I was wearing sandels which I guess was a mistake but I wasn't counting on there being freezing cold air coming out right onto my feet! During the first flight (from Syracuse to Dulles) it wasn't unbearable but I was pretty uncomfortable and just wanted to find a place to put my feet to get them warm. It was the second flight (from Dulles to Providence - yes, seems rather odd to fly down to Washington only to fly back up to Providence but I'll take it to get a cheap flight) that was really painful. About half-way through the flight my feet were numb and starting to hurt. I just wanted a blanket or something but Independence Air doesn't have blankets unless you buy a blanket/pillow set for $10 (you then get to keep them) so I just had to deal with it. I will remember for the future, though, to pack a pair of socks in my carry-on luggage in case it happens again.

Yours,
Penguini

So much for planning

2005-09-06T22:20:00.000-05:00

So, I made that list this morning. I crossed off what got done and you can see just how far I got with that. And no, it's not because I was so sick I couldn't get out of bed. I made the stupid mistake of calling my boss to see if my check from last month was there for me to pick up. She apparently didn't know I was back from Maine yet and when she found out I was home she asked if I could come in for an hour or two while she went to pick up her husband from the rehab hospital where he's been since getting both his knees replaced about two weeks ago. If it was for something less important I probably would have said I couldn't, but if I didn't go in her husband was going to have to stay for another night in rehab and I didn't want to be responsible for that.

So, my plans went down the toilet from there. My choice of whether or not to shower was gone (I really needed a shower but I could have squeeked by for another day if I was just running errands) so that took a bit of energy. I decided very quickly that I couldn't work AND run my errands, so they have all been pushed until tomorrow.

Now, what really got to me was that I told my boss I wasn't feeling very well when I talked to her on the phone (she asked how I was feeling so I was being honest). When I got in to work she apparently remembered me saying I wasn't doing that well and came out very quickly with the dreaded words, "Well, you look good!" I get that a lot - the double edged sword of having an invisible illness or disability. It's not that she said it that bothered me, it's how she said it. She didn't say it the way most people do - trying to make me feel better and as a compliment. When she said it, it sounded more like she didn't believe that I was really feeling horrible. Now, I have worked at the same place for over 5 years, I've grown up taking classes there, my boss has seen me through some really rough times and knows that I am not just going to "get better" all of a sudden, but somehow today I felt like she's sick of hearing that I'm not feeling well. She obviously had no idea how much I had sacrificed to go into work for just an hour and a half - I rearranged my whole day and basically made it so I wouldn't be able to do anything else or I'd be running myself into the ground to go in and work for a measly hour and a half.

So, that was my day. And now it's time for bed.

--Penguini

A horoscope, a pillowcase, and some errands

2005-09-05T23:10:00.000-05:00

This was my daily horoscope that I received in my e-mail:

"Today is an excellent day for you, ANNIE, in which you should be able to ground your emotions and find a greater amount of stability in your life in general. As you walk down the street, be conscious of the earth below you. Plant your feet firmly on the ground and realize that you are a living part of this great planet. You are a product of the Earth herself. Do not separate yourself from Mother Nature. You are her daughter - respect her."

That's a horoscope I could really use right now - a reminder to ground myself and connect with the earth. It's so hard to stay grounded, especially when the world makes as little sense as ever. I am dealing with a lot of uncertainties, mostly related to my health, and it's hard after a while to constantly have these questions swimming around in my head. I wish I had some disease that was easy to figure out, easy to treat, or at least where the treatment is fairly easy to decide on. It's just so hard to deal with a disease that isn't well known, isn't widely accepted as a serious illness, the treatment is tricky to figure out, insurance companies don't feel they need to cover all the treatments, and just generally sucks.

Enough about health stuff, that's not what this blog is for. I've been sitting here for the last few hours trying to figure out what else to write here, but I'm having some trouble thinking of anything. I'm watching Kathy Griffin on Bravo, which is pretty darn funny. I need to start watching funny things on TV more often. Most of the movies I get from Netflix are dramas. Right now I have "Hotel Rwanda", "Runaway Jury", and "Waking Life". I haven't watched the last one yet but my sister and brother-in-law both really like it so I thought I'd get it. But, they're definitely not comedies. I need to put some more funny movies on my Netflix list.

I just have to say that I just got a package in the mail from one of my "Lymie" friends, Debbie. She had told me that she was making something for me but I had no idea what it was and I certainly didn't expect what I opened. She embroidered a pillowcase with gorgeous purple flowers on the end. It's really beautiful and amazing that someone would do something like that for me! I'm so touched and amazed and just...pretty speechless about it. Now I need to go get a new pillow to put it on - my pillows aren't worthy of such a beautiful pillowcase. Debbie, if you happen to be reading this, thank you so much. You are amazing and you really made my day!

My agenda for the day is:

~~Take a shower and get dressed (pretty sad that this has to have it's own bullet)~~
~~Go by work to see if there's a check waiting for me for last month (and see if anyone has signed up for my theater classes)~~
Go do my laundry
Go to CVS (to pick up some things for my trip to Stacey's this weekend)
Go to Wal-Mart (also to pick up things for trip to Stacey's)
Go to the bank (to get money for trip to Stacey's and deposit check from work, if there is one)
Go to the post office

Whew! Quite a day of errands, but thankfully they can all be done in a fairly small area - two towns to visit and minimal driving if I get all of it done today. The gas prices being so high are incentive to get it all done in one errand-run. We'll see if I hold up long enough to get it all done. The shower is actually the most optional thing up there so I'm not sure if that will happen, but everything else should be doable!

Yours,
Penguini

A Start...

2005-09-05T16:53:00.000-05:00

I decided to start a new blog separate from my Caringbridge page which is mostly for health-related stuff. It's nice to have another creative outlet to post randomness and get away from health stuff for a while. But I won't make this a long start. I will post randomness again soon.

Yours,
Penguini