Life’s MysteriesOctober 2, 2018
Again it’s been awhile but I have an excuse. I’ve been dying. Well, not exactly. I might have been dying but there’s no way to be sure. If I were to call my doctor it would take months to get in to see him (somehow I’m fortunate that someone else cancelled so it’s down to a few weeks for a 30 minute phone call). If I were to go to the Emergency Room they would admit me after hours and hours of waiting, check my blood pressure, run a few blood tests, then tell me I’m not dying.
I’ve been thinking about that a lot over the weekend, not intentionally so as much as a result of my brain spinning out of control due to inflammation, something that’s clearly happening but doesn’t tend to show up on any of the typical tests they throw my way. “Why?” I think, “Shouldn’t I be in a hospital now, once and for all being fully and correctly diagnosed? Do I have Lyme or is something else going on? Or is it a mix of all the above? Someone please figure it out.”
I spent the larger part of Friday, Saturday, and Sunday, laying in bed or on a chair or a couch watching Netflix. I got through the final season of Little House on the Prairie and started into the first season of Babylon 5. I tried to listen through the screaming of tinnitus in my ears which would get louder, louder, and louder as my symptoms got worse. At noon on Saturday I walked in circles around the kitchen, my consciousness narrowing down to a point where I could barely tell here from there. What was I doing? Why was I in the kitchen? Why did I keep walking around? Oh yeah, I’m trying to keep my heart pumping, trying to keep alive as the inflammation in my gut, causing me to suddenly go up two to three belt sizes, was obviously having a negative impact on my ability to breath, my heart. My lips were going a little purple and my face tingled: symptoms of a stroke or a heart attack. If I were you I would have gone straight to the ER, especially now that I have insurance that will cover it. But to what end? To be told I wasn’t dying? Only return home to a rather disgusting medical bill.
I don’t know where to turn now. I’m making some changes to my diet that I hope will help, but I know that will only do so much good. I’ve gone on extreme diets and have only experienced moderate improvement while regularly going through downturns that would leave me in bed fearing for my life. I spent a year engaged in yoga: morning, evening, and night. I painted my house despite the pain and dizzy spells (by hand, mind you, to get the most exercise possible while making the empty days less lonely). I’ve gone to acupuncturists, joint specialists, neurologists, GI “experts”, allergists, massage therapists, physical therapists–I’ve been to so many doctors over the last fifteen years I have no clue where to turn anymore.
And that leads me to where I am today. The doctor that’s made the most progress with me has moved his office (again) further away (again) and has also started another clinic in Utah which he goes back and forth between. Had I been a typical Lyme patient I should be in remission…but clearly I’m not. The reality is start and it declares that I need a doctor closer to home, someone who’s able to meet me monthly or even weekly if needed, someone who takes goddamn insurance, and someone who I can call or meet with immediately if I’m having a severe flare up if only to show him, in real time, not through some rambling description of someone barely able to see straight and who’s tired as hell at an appointment, what’s going on in real time. It’s been fifteen years of this shit, you’d think I could find that.
If I had the money I’d fly to the Mayo Clinic, spend a week there, and get poked and prodded until we had some answers. I suspect I had Lyme plus a few other nasty co-infections, but I also suspect I have a number of other things going on that made the entire experience that much worse. The damage which has taken hold of my body was only amplified by the Lyme, but the treatments for it do nothing but cause what I believe to be a type of Inflammatory Arthritis which seems to attack every major organ in my body, most concerning being my gut, lungs, heart, and brain.
Ever go fishing? Catch a fish, pull it out of the water, and lay it on the ground? Ever watch it thrash around like wild, trying to get back to it’s home, only to slow down, slow down, and slow to the point of barely moving? Ever notice at this point it’s eyes start to glaze over. It’s still aware. It still wants the water. And yet it’s not quite alive nor quite dead at this point, somewhere in limbo, needing some external force to step in and take it back home.
During 2017 I was that fish, flapping around wildly, trying to find my air. With each month this year I thrash and struggle a little less and my eyes are slowly glazing over. I am neither alive nor dead.