Lab Rats Revolt

Well this week has had a disappointing start. Heard back from my endocrinologist that she is unwilling to raise my dose to decrease the number of vitamin D injections also my current vial has expired. Which means 70% of that very expensive out of pocket vial just went down the medical waste bin and my levels are none the better.  My primary care doctor is unwilling to finalize my EDS diagnosis meaning no referrals to any tertiary care specialists who might have the slightest clue how to handle my primary and co-morbid issues. Don’t you just love how someone with next to zero experience in the condition can decide weather or not I can see a specialist?  My gastroenterologist has a three month wait list for current patients, and I cant get much more done at the dentist when my health is so unstable.

So once again this lab rat is considering a revolt. Since my referral to a gastrointestinal motility specialist fell flat early last year I have been in a rapid decline.  All this traveling and stress to see these doctors with the end result being no positive change. No change in treatment, no change in medication, no help with mobility aids, no tertiary specialists,  nothing but an increase in symptoms and decrease in quality of life. Which is discouraging to say the least.

Makes me reminisce about all the other times I have been in this situation. When a former primary care insisted that the only possible thing to cause all my symptoms was a brain tumor. But when my scans came back clean she blew me off to being a “hypochondriac with an eating disorder”. The doctor who left the exam room door open while discussing what a demanding bitch I was with the nurses at the station for insisting on seeing a gastroenterologist after two years of increasing GI symptoms. Every doctor who ever told me my symptoms were impossible or couldn’t possibly be related to any one syndrome. The allergist who said he would run an “expansive panel” though when the results came back he ordered four items three of which I already knew I was allergic to. The gastroenterologist who told me to come back when I got better insurance because it was to much work to get tests and treatment approved. Every single one of the six dozen or so doctors who canceled my new patient appointment after receiving my chart saying they couldn’t deal with someone as sick as me. Heck a few private practices shut me out entirely.

Often after these encounters id call it a sabbatical and run like heck from any residence of those in white coats. Honestly more often than not that was for the best. Its not that I’m ok with having to resort to the ER and urgent care for any extra issues that come up or when symptoms flare. But how often can one take being told “there’s nothing I can do but down worry its not like its cancer”? As I say I am the zebra on a horse farm and trying to put a saddle me doesn’t make me a horse.

Alas there are consequences to abstaining from regular medical care. Doctors withhold necessary prescriptions. You get labeled “non-compliant” when really your just tired of tolerating abuse, laziness, and discouraging commentary on your status. You wait more than six months or so and your file gets warehoused making the next appointment even harder to obtain. Despite all this I am beginning to believe its still worth it. So I feel I’ll potentially be spending my next three months finishing off the appointments already made, obtaining prescription refills, and attempting to push my medical equipment needs through a highly uncooperative HMO.

So much decline nothing much to show. I am no longer able to load the washer with sheets, blankets, or coats. It takes me five to seven attempts with rest in between to load the washer at all. By the third attempt at loading the dishwasher I’ve often subluxed my hips and rolled my ankles. Showering is a week long event to clean from head to toe in sections so I don’t pass out, pinch a nerve, or lose sensation in my extremities. When its taking me three hours every morning to maneuver my body enough to brace what I have to so I can sit up and get on with my day. Heck if I leave the house twice a month for something not medically relates like groceries its a thrill! This isn’t a life I am ok with and if all these doctors haven’t done anything to improve my situation why am I subjecting myself to it?

I know eventually I will have to go back. Though I do my best not to rely on prescription medication there is only so much one can do when your throat swells shut, your hives blister and rupture, and your vomiting over thirty times a day. When I’m the one having to live the consequences I am often better off being solely in charge of my options. In the past staying away from doctors hasn’t cost me as much mobility as going to them has. My immune system wasn’t always this out of control when I was going it alone. Maybe at this point intuition is the best medicine I can give myself.