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

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?

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

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