There is so much I should be doing right now and today in general. I have a final exam tomorrow for my substance abuse/dependence class tomorrow afternoon, a ton of mail to go through, bills to pay, and of course, cleaning just to name a few. Once again I was up most of last night because my brain wouldn't shut down and as the latest storm system got closer, the higher my pain levels soared. Unfortunately, once it gets to be around midnight, I can't/won't take anything stronger than Advil since I have to wake up at 4am to take my mother to dialysis and the risks just aren't worth it. When the pain increases as quickly as it did, I don't even bother with Advil as it becomes just another chemical/poison in my system that doesn't work. Now that I'm back home with no plans to go anywhere, I'm hoping my pain medication works at least a little bit.
Eight years ago last month I was diagnosed with Fibromyalgia. It never would have happened had my primary doctor not referred me to several specialists to prove that there was nothing wrong with me because my labs at the time were improving even if my symptoms weren't. Eight years later, I wonder if the specialist I chose to stay with missed something. Since that time, I have had a myriad of new symptoms, changes in my labwork, and while I had a very brief reprieve from what can be downright crippling pain, I'm worse than when I began this medical ordeal. My current primary doctor simply goes on the word of my specialists when it comes to anything outside of the all too often injury, cold, flu, sinus infection, etc. Unfortunately, both doctors listen to my symptoms, evaluate my overall "comfort level," and prescribe more medication to treat the symptoms. Some things are pretty common with fibromyalgia, but there are too many other symptoms I have not found to be linked to the disease. Things like overall muscle pain, migraines, a low tolerance for pain, but high pain threshold, and depression are common in fibromyalgia patients. Except I have much more than that. And I refuse to take any more medications until I find out answers. I can't open my hands completely, I've been dealing with numbness/weakness, severe joint pain, multiple vitamin deficiencies, and my migraines ceased being migraines and became monsters several years ago. I'm talking about spending weeks in bed alternating anxiety medication, migraine medication, and powerful pain killers just to get them under control. I can't watch television, talk on the phone, or do anything that can stimulate me in any way or it becomes this crippling, out of control monster. After seeing a neurologist, I found a medication that keeps these monster headaches under control and allow me to function. Since they seem to happen twice a year--in the early spring and late fall--I only get a tiny twinge of pain during these times now. Nothing too horrible, but just enough of a twinge to know that it's there lurking. And I can deal with that. It's the constant fighting, medical complacency, and knowing something else is going on that leaves me in tears too often. No one should have to live like this. No one should have to wake up every morning sick, go to bed at night sick, and be constantly reminded that they aren't normal. It is even worse for those who don't look sick. It's even worse when those who are supposed to love and support you choose to criticize, demean, and judge you out of ignorance and intolerance than attempt to try to learn about what the problem is. I am not on disability because I'm too lazy to work, but because while yes I am sick, my illness(es) make it impossible to find steady, gainful employment. But I've been trying to get an education with the hopes that by the time I graduate, doctors will have found out exactly what is going on and find a way to treat me--hopefully without having to take handfulls of pills every day. Unfortunately, the college I am currently attending seems to accommodate individuals with physical handicaps (meaning those who need wheelchairs, canes, etc.), individuals with learning disabilities, but when it comes to chronic illnesses--especially invisible ones--it becomes one medically withdrawn semester after another. Last semester I finally gained some ground with the school by being allowed to take an incomplete in one course while having to medically withdraw from two others because of the nature of the work. I don't know what happened, but there are several new administrators and deans with whom have no tolerance at all. Even with plenty of documentation, I was informed that "if I can't finish one class because of my medical condition, I cannot finish any." What it comes down to is the professor. Many professors have no problems accommodating my illness, which results in many missed classes, as long as I can prove that I am keeping up with the work from home, that I am turning assignments in on time, and can prove that I am taking away from the course the knowledge I should be given the course. In many cases, I have not only proved that even when my physical body will not cooperate, my mind is just fine, and I have proven to show work that is far superior to students with whom show up for every class. That alone should speak volumes, yet it doesn't. And so while I prepare to deal with doctors and tests until someone is able to find an underlying cause to my illness, I am also being forced to prepare for a fight with my school on the basis of discrimination. And neither are things I have any intention of backing down from.
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