I’m just going to lay this all out on the line as none of this is what I would consider to be private information I wouldn’t tell friends. It’s just that working for so long in the medical field I have this annoying little voice in the back of my head going, “but this is private patient information and it’s in violation of HIPAA!” However the patient is me and I’m putting the information out there so would it just please shut up already.
I have Fibromyalgia (FM). This sucks. I also have what was diagnosed as Undifferentiated Connective Tissue Disease (UCTD). This also sucks, in some ways quite a bit more than FM does. I have a feeling in the way bitty back of my gut that I may only have UCTD and all of my FM symptoms are caused by secondary disorders arising from UCTD. However it would be close to impossible to prove it and I have so many FM symptoms that it does me better to simply keep the diagnosis.
What inspired me to write this post today is because I got a bit of information last night that confirmed something I’ve been SAYING all along; I knew it to be true and yet all I’d get were some pats on the head and a “well maybe, but..”
In this particular case it is very much my own fault that I didn’t prove them wrong before this, but what I want to write about today is my growing realization that I am, and must continue to be, my own doctor. And how frustrating this is.
The results I got last night were that although I’ve been taking iron supplements and my iron levels are fabulous (for probably the first time in… well a long time) but I am still dangerously anemic. I knew this to be a fact and it is why I resisted taking iron supplements for so long. Therein lies my mistake, I could have proven this years ago if I had just taken them. It is also a mark of the failure of the medical system that I feel like I have to prove the doctors WRONG in order for them to listen to me.
I also expected this because even though I was taking the iron, I was still having my familiar bouts of dizziness and momentary blackened vision when I stood up quickly. If you know me in real life and you see me stand up, stand for a few moments looking blank, and then continue on my way it’s because I can’t see a damned thing and I need to wait for my vision to clear before I can walk. I don’t remember a time when this didn’t happen.
So now, here I am, with the proof that something else is wrong and where does it get me? Nowhere. There are an almost unlimited amount of things that could cause my anemia, and most of them are scary. The ones that aren’t scary are the ones they can’t really prove, all they can do is slap a sticker on me and send me on my way. “This one is anemic, so refuse to do surgery on her even though there’s nothing she can do about it.”
And I can just see an un-ending future of trying to explain to new doctors that I am, in fact, not iron-deficient and no I can’t fix it so yes you’re going to have to figure out a way to heal around it.
Beyond that, it was this morning that I was doing some research into non-iron-deficient anemia and I decided to re-familiarize myself with the standards of UCTD. It was a diagnosis I had never really understood beyond that it made my body attack itself. During this research I stumbled across a syndrome that can be caused by UCTD/MCTD which explains a number of things I’ve had for years. Things I went to my doctor and asked her if they could be caused by my disorders to which I never got a good reply.
Good reply? I never got a reply; I got vague promise to look into it and nothing since then.
And yes, I could ride my doctor like a prize-pony until I got a response but all that would get me is my doctor throwing lab-orders and MRI’s at me until I or my medical insurance cried ‘uncle.’
So instead I settle down in front of Dr. Wikipedia with a dictionary and some paper to take notes on and wade through such enlightening terms as “Erythroid hyperplasia with accelerated production of red cells, reflected by reticulocytosis, and slight macrocytosis in peripheral blood.”
And in the end, what does all of this time spent in research get me?: an upset doctor who doesn’t trust Wikipedia or internet sites. Sometimes the information IS wrong, or misleading, but it’s a fuck-load more than I got from my doctor.
I don’t have an answer for other people who find this blog while in their own quest to figure out what the hell is wrong with them when the doctors won’t listen. All I can do is thank God for Wikipedia and close to a decade of experience working in the medical field. I can at least read through an article and have a small understanding of the gist of the medical terms. I can’t imagine how confusing it would be for someone who hadn’t worked with these terms before.
And I can hope that armed with specific questions and requests for the doctor I’ll be going to see tonight, I might, just might, get to figure out what’s wrong with me. Although it’s not as likely as I’d like to think considering that I’m going to a physician I’ve never seen before because it’d be two weeks before I’d have been able to get in with my PMD.
Honestly at this point I’m wondering if I should fuck-all and go straight to a Rheumatologist with this. Maybe I’d be able to get in for an appointment sometime before next year… maybe.
And please, my friends, I know that you care about me and I appreciate all of your well-wishes ahead of time. Please don’t feel that you have to write something for the sake of my illness. I know that you’re all thinking it as you read. Make du’a for me, and don’t worry about commenting to tell me that you made du’a.
And if you are someone who has Fibromyalgia (FM) or Undifferentiated (or Mixed) Connective Tissue Disease (UCTD/MCTD) or both, let me tell you a few things I’ve self-diagnosed:
1.) Stop, immediately, drinking and eating anything that has aspartame in it. The moment that shit became big back in the 90’s I knew that it made me flare up. Anyone remember Clearly Canadian when it first came out? It used to have aspartame in it and it would make me sick. I flare up whenever I have anything with aspartame in particular, although I try to stay away from any artificial sweeteners at all.
2.) Dark colas make me sick as well. Not as sick as diet colas, but anything with caramel coloring makes me feel achy.
3.) Things that have a lot of preservatives really also affect my FM and UCTD. After I eat them I become very fatigued.
4.) Too much sugar affects me, but I will say that this may not be related to my FM and UCTD.
If I can think of anything else that I know, personally, makes me ill, I will write about it. Otherwise just keep an eye on yourself, if you feel yourself flare up, think about what you did/ate recently and remember it. And the next time you eat/do those things, see if you flare again. It’s the best method to find out what works for you.