Friday, February 6, 2015

Seek...and ye shall find?

I'm actively pursuing a diagnosis again...and it's so exhausting. It just drains me emotionally, mentally, and physically. It's this crazy stew of emotions, all swirling together, constantly at the forefront of my mind. It makes it hard to focus on anything else or just be able to relax. Anxiety, hope, pessimism, anger, frustration....there's just so much there, because it's been so long (almost 15 years)....and I just want to know what's wrong with me.

For a few years, I stopped caring (or at least told myself I didn't care) about getting a diagnosis, because it's so wearying, the cycle of  having tests proposed, getting the blood drawn, then waiting....waiting...waiting for the results to come back and finding out they're negative yet again.

And the doctors and other medical people I've dealt with, in general, just don't care that much and suck at following up. I have to hound them, over and over again, to get any kind of response back. That's why I'm done dealing with the Muscular Dystrophy Association Clinic (which is a whole post on its own). They are absolute crap at follow-up unless you badger them multiple times. It was very evident that I wasn't seen as a human being, with feelings and worries, full of pain and questions; I was a combination of symptoms that didn't fit nicely into an easy diagnosis, a blood test, a research project, something to think about in a distant and academic way. Their genetic counselor seems to act like she only has to talk to me when I go in for my yearly visit, even though she has all my contact info. She doesn't update you on anything--it's just radio silence for months and months. Supposedly they were having issues with the lab that runs some of their blood tests this last year, but she never bothered to let me know. And then she just "forgot" to call or email me with the results. I didn't even know the lab results were back until I got a bill for it! How hard is it to send a simple email? There was only ever one, ONE! doctor I was seen by at the MDA clinic that made me feel cared for and considered as a person...and he recently left.

I have no desire to be handed off to another academic, research paper oriented doctor who could care less about the patient in front of him. I never got any advice from the MDA on how to actually live with my illness, besides one nurse telling me to take an obscene amount of ibuprofen every day. One doctor said, "Well, you're not nearly as bad off as my other patients," as if that somehow meant I didn't need to seek physical therapy or other treatments to improve my quality of life because I wasn't incapacitated and severely disabled. I was never given any advice or suggestions on ways to maintain my muscle strength or energy levels. It was just tests, tests and more tests, and sometimes having to wait more than a year, let me repeat, MORE THAN A YEAR, to get back results from tests that take maybe a few weeks to do.

I was so turned off by the way I was treated by the MDA that I just shut off for a while. I couldn't take the emotional roller coaster anymore. I didn't even want to go to the regular doctor unless I was sick with something easily fixed, like an ear infection or something. The emotional strain is so hard, and doctors just don't get that. I am the one watching my body fall apart bit by bit, I am the one living with fatigue and pain, I am the one worried about the future (What if I wind up in a wheelchair? What work can I do that won't exhaust me? How can I have kids if I'm this tired and weak all the time? etc, etc), I am the one who has to live with it all day in and day out. And it can be so weighty and just overwhelming at times.

I have been struggling a lot emotionally since last summer. I have been feeling really, really down about being sick over the last several months. I have cried with Colin on multiple occasions and shared with him how utterly lonely and overwhelming it can be some days. It just feels sometimes like no one cares, that I am utterly alone in my desire to find out what the hell is wrong with me, that I am just another appointment the doctor crosses off their list for the day.

And I tried to not care for awhile, to put all those emotions away, but it just keeps coming back: I want a name to put to all these symptoms. I. Just. Want. To. Know.

I don't want a pat on the head and to be sent on my way, told that at least I'm not as bad off as other patients. I don't want to be told to keep waiting and waiting, and maybe someday someone somewhere will get around to figuring out what's wrong with me. I don't want to keep being told what I don't have. I don't want to hear any more academic jargon that just describes my symptoms (I live with it every day, I know what my symptoms are, thankyouverymuch). I don't want to be dismissed, as if I don't have any insight to offer because I don't have MD after my name. I don't want answers to questions I didn't ask or care about.

I want a little compassion, some empathy, acknowledgement that I am a living, breathing human being who has been struggling along for almost 15 years now with no clue as to what is making my body slowly but surely fall apart. That even though I keep hitting wall after wall, I have kept trying to find an answer.

And now, maybe, a lead of some kind. I'm trying so hard to not get my hopes up about this, but I'm going to get tested for celiac disease in a couple weeks. I have been doing a lot of research on celiac recently, and have discovered that people with unexplained neuropathy (which is what I have) should get tested, as a certain percentage of people will have celiac disease. (thank you, Celiac Disease Center for helpful and accurate info!) My younger brother, Andrew, and my grandma both have celiac, which puts me at a strong likelihood of also having it.

I can't let myself get too excited, because it could all come back negative yet again. But I so hope that this is it. That finally, finally! I will have an answer, a diagnosis, the reason for why I have been sick for so long. Yeah, switching to eating gluten free would be inconvenient at first, but I would be more than willing to make the change if that's what has been making me sick all these years. I will also be spitting mad at the MDA, because that's such an easy thing to test for.

Fingers crossed, I will know in a few weeks.


  1. Wow, Elisabeth. I am in such awe of you. You have been so brave in the face of so much for so long... I totally understand what you mean about wanting to feel like the "professionals" see you as a human being, rather than an item on a list.

    I don't know how much this means, in the face of the accumulated opposition you face, but I, personally, am really happy that you've returned to writing about your experience. I think that anyone's pursuit of finding and making their voice heard is crucial to their humanity. And I am so glad to hear yours in the midst of your experience.

    1. Thank you, Tom! Colin has been encouraging me to get back into writing again--to help me process things in a fresh way and to maybe help other people who are also feeling alone.