If this aimless rant resonates with anyone, feel free to chime in. Not asking to be saved, but any insight, passing comradery, or a slice of common ground would be a comfort.
I don't know what I have. All I know is that I went for a hike in late 2002 and within the week haven't been the same, but everytime I try to zero in the symptoms they mutate, change again, jump around, and leave me chasing my tail for connections. I don't recall a tick; I didn't get the rash... I was in tick country (the Northern IL portion) but I was ignorant of Lyme at the time and thought I would've had flu symptoms. I was mainly zeroing in on the involuntary movements that cropped up from mild to extreme in a weeks time; practically overnight.
I'm not going to get into the meat of it, just the doctor situation that takes the nightmare into funhouse mirror labyrinth territory.
In 2004 I lost my insurance because Blue Cross didn't like the fact that I had been poking around alternate clinics too often after getting sick to death of being sent out the door with tranquilizers to shut me up. The worst part is, because of having actual anxiety, it's made even non Lymish visits turn into this garbage. Last time my foot got bad up and I had to stay off of it or risk not being able to walk for weeks longer than I already was faced with, I happened to go in on a "good day" where it looked like edmea with a rash so I got saddled with a rash cream, despite the previous 2 times I went in for it I was sent to the ER immediately for an ultrasound (they feared a clot). Anxiety is apparently an awesome superpower - you're immune to all but the basic of easy to diagnose ailments!
It was literally the same problem, seen in a different state of progression and it went from "YOU NEED AN ULTRASOUND!" to "here's some rash cream, you probably have dirty shoes and edema in one foot". That is horrifying that it can differ than much for something that can actually be seen an analyzed. I wasn't there for Vicodin... Advil did me much better than that crap anyway. I was there for a simple answer. I didn't realize there was a threat of blood clots at the time. Now I know it's pretty much just something attacking my joints at random.
I lost vision in my left eye for a good 30-40 min (hopefully an ocular migraine, though I've never actually had migraines much less and ocular one before, but I'll never know since all I got was a CT scan; after an 8 hour wait the doctor finally came in, annoyed, to tell me to stop looking at screens so long (I told him I was reading when it happened..no matter that it was a paper book). Actually the last foot issue and eye issue overlapped at the same ER visit, but that's another story...I was fearing mini stroke at the time but had my history of neurological wreckage to root for in that situation. (I always have a lot more issues when forced to sit in excess. Shallow breathing attacks/body temperature plummets, skin burning up where ice doesn't even feel cold enough to relieve despite no fever..dunno if anyone with Lyme gets this. )
This kind of treatment for such basics, here I am at 40, a lot of days I can barely think my way out of a wet paper sack, and I'm somehow supposed to take on a system where every other account says, even an area like Suburban Chicago has no Lyme literate doctors (even if they did, the likelihood they'd take my $400/mo insurance, and if they did not like the insurance wouldn't try to fight them every step of the way, even though I'm extremely lucky to have them bleeding me out each month just incase I get what they'd consider a "real medical situation", which yes, it'd be nice to not bankrupt my household. Each doctor that has sent me home with "just stress" or worse, acted like I'm nuts or making stuff up/wasting their ten minute time slot has pushed me further and further from even bothering with them for anything. Thank God no one else in my family has anything "weird" because I'd have a hard time sitting by watching them do that to someone else. But here I am 14 years later, it progresses, mutates, and gives me breaks once in a while, and when i think i find things that have been helping me it comes right back in and leaves me chasing my tail for solutions/connections. I don't think I have this fight in me... I don't exactly have a proactive support net around me, at all. "Why don't you try seeing a doctor".
Anyway... I was 22..23.. something like that. At a crucial crossroads in my life. It'd be one thing if there was one issue we were saddled with, could accept our lot in life and have everyone around us cheering us on when we got our diagnosis. Most people believe the general message of "if something's wrong, a doctor will tell you". But this... it doesn't exist.. get treated like dirt from all sides at worst, get pitied with those who feel helpless on how to help at best (if you've still got people close enough to see you go through the cycles long enough). It's embarassing having teenage cashiers get pissy at you because you space out and struggle to read the self checkout screen at the store because it's one of your "off" nights.
At this point... the futile obstacle course they make this almost by design, I don't have anywhere to turn. I can't afford to doctor hop much less jet set to see a doctor with a half a year waitlist just to see if I'm even barking up the right tree. Most doctors are immediately opposed to the patient even having an idea of what they might have to begin with. If I had my mind and nerves in tact believe me I'd be putting up the good fight... but I'm so far in the fog...without my mind I can't pull myself out of it.
Forgive the typos, I don't have the wherewithal to try to edit this trainwreck. : )
Post Edited (bansh) : 3/20/2018 9:46:15 AM (GMT-6)