Against Myself

I'm struggling.

I went to the doctor last year because the circulation in my fingers got wonky. I figured they'd tell me to wear gloves and keep warm. I didn't think it was anything big or important or whatever. Then all these blood tests were ordered and there was all this hoopla from my doctor about collagen vascular diseases. In fact, he eve made a diagnosis of Lupus right there. Of course, he called me later that day to say he isn't really familiar with Lupus and talked to a Rhuematologist who suggested more testing needed to be done before a diagnosis could be made.

More testing was done and I was told I don't have Lupus right this moment, but there is a chance I'll develop it. My achy hips, knees and wrists were chalked up to my overactive imagination. My fatigue and headaches were ignored and not even written down in the doctor's notes. The rash across my knuckles (something I've never ever had or even seen before!) was attributed to too frequent hand washing (although I wash my hands only about 4 times a day).

And although I just came in one day casually asking about my fingers - is this normal? - I left the two month experience of blood tests and scary diagnoses from this doctor feeling like I'd been the one who came in asking if I had Lupus when really I'd just had the sniffles or something.

I decided that this rural doctor wasn't taking me seriously and since he'd admitted he had no experience with these kinds of diseases (autoimmune diseases) I decided to wait until I got to NYC and find a doctor that knew what they were doing.

(FYI - an autoimmune disease happens when a person's immune system gets confused about which cells belong to itself and which cells are outside viruses and bacteria, and starts attacking it's own cells.)

After arriving in NYC I started experiencing a bunch of strange health-related things. I went to a local clinic and the doctor there really seems to listen and take me seriously. That is a huge relief.

I'm gathering up medical records as far back as I can to help my doctors try to figure out what's going on with me. And I'm trying to get health insurance so I can get more tests done. This part is exhausting. The damn person who can answer my questions about filling out the insurance paperwork hasn't returned my four calls over the last two weeks and the clock is ticking. The longer it takes me to turn in the paperwork, the longer it will be before I can get medical care. And with many illnesses, time can often be a huge factor in prevention major damage.

I've been reading up on autoimmune diseases and there are only a couple that really match what I'm experiencing. The rest do not. But it's scary. If I do have (or develop) one of these diseases it is necessary that they find it now.

It's hard for me to ask for help. I'm extremely self-reliant, independent, and (a bit embarassed to say) proud. I don't want anybody to think I'm weak or helpless or needy. And I certainly do not want to be treated that way. I don't want to be a burden to anyone. And I don't want anyone to think I'm just trying to get attention. This is not the kind of attention I seek (when I do seek attention).

Even though I know that having an illness isn't something to be embarassed about I actually feel a lot of embarassment around it. Especially right now when it's unclear exactly what the illness might be. And what if the doctors say there really is nothing wrong - then what does that mean about all these symptoms I'm experiencing? What the hell is causing them?

I'm torn between wanting to find out what is wrong, and just declaring that I'm okay. Such a declaration feels like denial, and sounds like something that will end up making me sicker. Trying to find out what is wrong feels like I'm a big cry baby who is taking things too seriously.

Emotionally, every option feels crappy because I'm scared.