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