Monday, April 09, 2012

Communication is King

I feel like the title of this post says a lot. Communication - and I mean GOOD communication - is so amazing and just makes such a huge difference for...everything. But let me back up a little bit and explain why I feel like shouting this from the rooftops of...well, let's just say I don't live in a city so I wouldn't be shouting from particularly tall rooftops but that doesn't mean I'm less emphatic about this.

Back when I last posted here, about two and a half weeks ago (yes, I pulled out a calendar and actually figured out how long it had been) I was in a particularly bad place. My post was about being in that place where I just didn't feel like I could keep pushing through and, sure enough, shortly after writing it I had a little breakdown/meltdown and ended up crying on the phone with Eric for a little while. That helped me feel a little better - just feeling that connection to him and knowing that we were in this together and we would figure it all out - so I wiped away my tears and headed off to see my adorable niece and sister-in-law which helped to further cheer me up. But that doesn't mean that things were all hunky dory (seriously? who uses that term?). I was still feeling totally stressed, still had a looming announcement to make at work (which is my church) that I'll be leaving in June at the end of the church year, and there was a lot of stress going on between Eric and I. But at least for right then I was feeling a little better.

So, over the next (referring back to my calendar) week things continued to be stressful. I was crazy busy with work stuff getting ready for the service that I'm in charge of (SO glad that's only once a year) and things between Eric and I were continuing to be difficult. We were just struggling to talk and be able to really hear each other. We were really trying, I truly believe that, but we are both very stubborn by nature and we had taken opposite stances on the subject of how to handle the condo/mortgage. We just weren't willing to budge, partially just because we didn't want to give in to the other person and neither of us react well to having someone butt heads with us or try to force us to change our minds.

But then things all of a sudden changed. This is going to be tricky to explain but Eric gave up trying to convince me that his side was the right side and just figured out how he would be okay with going along with what I wanted to do. And what he would need to do in order to be comfortable with my choice was something that would result in us spending less time together which made me really sad and ultimately made me give up clinging to my side. So all of a sudden we had each let go of the thing we had been clinging to for months and we were finally able to talk. It was crazy and amazing!

And then something else amazing happened - a few days later we had a second Realtor come to give us another opinion on selling it and we got a hugely different number from him on what we could sell the condo for. A number so much better and closer to what I thought it should be based on research I had done. And all of a sudden we had this new door open to us!

And then something else amazing happened - we kept communicating! We have continued to talk about all kinds of things. There was something really bothering me for a little while and I wasn't sure how to bring it up with Eric so I used a technique he suggested and I wrote him a letter about it. It was fantastic! I was able to sit down and really think through what I wanted to say, read it over multiple times to make sure I really got my message across without being angry or mean, and sent it to him while he was at work so he would have time to read it and process it before coming home to talk it through. And we talked about it and we have kept talking! It's kind of crazy to feel like this but it's so freeing to feel like we can just TALK!

So, if I didn't think communication was important before, I definitely think it is now. Things are changing so much for the better and I'm so thrilled about it! Right about now I feel like we can tackle all kinds of things (but at the same time I don't really want any more problems for at least a little while!). Who knew!?!


Friday, March 23, 2012

Music for the Spirit

I haven't posted anything there in a while. Actually, I just looked and it hasn't quite been 2 months. I would have sworn it had been much longer. I guess it's just that so much has happened during the past few months, the biggest of which was my wedding. I'm married now! Kind of a big thing.

But that's not what I'm here to write about. That's not what drew me here this morning with such a strong pull that I couldn't really ignore it. I have all of these things swirling around me but all
I can do right now is sit here and write because I just cannot deal with any more of the crap going on in my life. I haven't even been home from my honeymoon for two weeks and already I have been dealing with so much stress and turmoil that I'm surprised I'm not currently curled up in bed. But no, I'm still getting up each day and semi-functioning.

There's the work stuff...that I can't really talk about here right now (next week I'll be able to talk about a little more of it). But that has taken up a huge amount of my energy, time, and ability to cope.

And then there's the...I don't know quite how to categorize it because it spills into so many categories. It's relationship/marriage stuff but it's also financial stuff but it's also communication
stuff (which could just be lumped into the relationship/marriage stuff). There's a lot to struggle through, to be frustrated with.

This morning I have been listening to music on spotify (as I do everyday) and the song that is resonating really strongly is "Keep Breathing" by Ingrid Michaelson. There are actually a few of her songs that resonate with me during this time, but that one especially.

"Keep Breathing"
By Ingrid Michaelson

The storm is coming but I don't mind
People are dying, I close my blinds

All that I know is I'm breathing now

I want to change the world
Instead I sleep
I want to believe in more than you and me

But all that I know is I'm breathing
All I can do is keep breathing
All we can do is keep breathing now

All that I know is I'm breathing
All I can do is keep breathing.
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing now

And one of the most powerful songs about struggling is by an amazing, brave Lyme friend, Alisa Turner. The song is called "Breathing" (interesting how focusing on breathing becomes a theme during times of struggle).

By Alisa Turner

It is dying to come out
It is killing me within
Someone check if I'm still

Just keep me breathing
Oh now what should I say
I wanna to keep it from the heart
Well someone check if I'm still

Just keep me breathing
See this is why I sing it
It's gonna keep me breathing

I should've told you from the start of things
That tonight I'm really suffering
And me I hope you're still

Don't stop believing
Cause if you stop believing
Than it will keep me singing

I do have thought of suicide
I know it's brave of me to say (I know)
But am I brave enough

To Stay
Enough to stay
So this is why I'm singing
To keep me breathing

I don't know exactly what I'm trying to say here. I guess just that when things are getting tough, as they are right now - and not even physically tough, but emotionally and spiritually tough - going back to focusing on something fundamental like breathing is helpful. But more important than that - for me, seeking comfort and support and nurturing and renewal through music is important. When I got up this morning feeling totally drained emotionally and mentally an
d spiritually from everything that's going on, the first thing I wanted to do (and the first thing I did) was to go and turn on the music on my computer.

No, the songs I listen to when I'm struggling like this are not always so...for lack of a better word I'll call them sad or melancholy. I listen to other songs to try to lift my spirits like "Rolling in the Deep" by Adele and "Good Life" by OneRepublic and stuff from Glee. But there needs to be a balance.

I have no idea if I've gotten what I needed out of this writing. But I know I've run out of time. Now I need to get dressed and head off to see my wonderful almost 10-month-old niece who makes everything better. She is perhaps the best therapy there is.


Wednesday, February 01, 2012

Enjoying the Moment

Life is constantly changing. Constantly moving forward whether we want it to or not. Sometimes it feels like it's inching forward, at a snail's pace, with very little happening that matters. But when we look back over weeks, months, years, we realize that it was whizzing by us much faster than we could have imagined.

It seems that we are often either looking back remembering something that has happened - a particularly good thing that makes us feel warm inside or something that has left us scarred, whether physically or emotionally - or looking ahead towards something looming off in the near future. It's hard for us to sit in this moment and look around us at what is happening right now. This moment rarely ever seems like it contains enough and we are often longing for a moment in the distance that we hope will bring us more of what we hope for.

Right now I am struggling to remain in the moment even more than usual for a number of reasons. Perhaps the biggest reason is that I am getting closer and closer to one of the biggest life changes I will encounter - getting married. My wedding is 31 days from today, 4 weeks from Saturday, and very quickly approaching. There is so much to do that I feel like I am constantly checking to-do lists, sending e-mails to arrange things, trying to coordinate things with my soon-to-be husband, or talking wedding plans with friends and family when I find time to just hang out with them. There's so much to do that it seems rare that I have a chance to sit and look around me at THIS moment without listening to the constant list of tasks running through my head. And as the wedding date gets closer, my excitement (and nervousness) grows so I kind of can't wait for it to get here. I may be a tad impatient at times and I have a feeling this is going to be one of those times, although I may find myself wishing for an extra few days to get things done when we find ourselves down to the wire.

On top of the wedding planning, I am also in the midst of my very familiar medical world where there is always something - an appointment, test, procedure, etc. - looming on the horizon. Sometimes these are things that I dread but right now the few things that are scheduled are things I am looking forward to, at least in some ways. A week from tomorrow I will have a new port-a-cath placed allowing me to finally have the PICC line removed that I've had since I was in the hospital in October with blood clots, requiring my last port to be removed. This port will be my fourth and while I have mixed feelings about needing to have it placed, I'm really looking forward to getting back to my "normal" (if there is such a thing) and not having to deal with the PICC line anymore. While I may not like needing central lines for IV medications, I know what my quality of life is like without them and I'm willing to put up with them to be able to live my life more fully. So I'm counting down to that procedure.

And I'm dealing with IV antibiotics that make me quite nauseous which makes it pretty difficult to try to be in the moment. When the current moment sucks, I think it's only natural to look ahead to better moments when things will be better.

When you put all of these things together, there's a lot going on. And quite a bit of anxiety starting to rise up. I am finally getting to have the relatively "normal" experience of getting married, but I have fears that my health will prevent me from really enjoying the day. And then of course if I worry about it too much, I may just make myself sicker and shoot myself in the foot. I'm trying to take advice from people who have done this before me and, if possible, not focus so much on the actual wedding day but on the fact that it's going to be the start of our life together. But I can't help wanting to have that day. These illnesses have taken so much from me, so many years, I want to be able to fully enjoy this one special day (and hopefully the week afterwards while we're on our honeymoon).

So I'll try to stay as calm as possible and enjoy the process of planning the wedding. I'll try not to put so much into the one day but at the same time do whatever I possibly can to make myself feel as well as possible for that day. If I need to do extra fluids the night before, so be it. If I need to take frequent breaks during the reception to go sit down, I'll do that as long as I get to fully enjoy the rest of the time. If I need to carry around my pill case in a purse all day, that's fine. It's just hard not knowing what to do to make it easier on my body and not being able to predict how I will be feeling on that particular day. Ahh, the joys of chronic illness.


Thursday, September 01, 2011

Number 12

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!


Wednesday, July 20, 2011

My Beach

This is my beach
Early in the morning
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

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!


Saturday, January 15, 2011

New Year's Commitments

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?


Tuesday, December 14, 2010

Thirteen Years

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.


Sunday, July 26, 2009

Am I Kidding Myself?

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.


Monday, February 16, 2009

How can I not love them?

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.)

Penguini (aka Miss Annie)