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.

Acceptance

I asked to have grab bars installed in my bathroom today.

I should have done it right after we first moved in two years ago...but I am a prideful person and didn't want to admit that I need them.
Maybe when I fell out of the shower last summer and bashed my back against the toilet, that might have been a good sign it was time to ask.
Or the fact that when I close my eyes, I have pretty much no sense of balance and need to hold on to something or else I start tipping over. Well, even with my eyes open, it's not much better. Sometimes my balance just suddenly dissipates , and I need to grab hold of something solidly anchored to prevent a face-plant.

Either way, I finally swallowed my pride and stopped by the apartment complex office today, fighting anxiety that I would have to fight to get what I need or provide a lengthy justification. But it was surprisingly.... easy. The office manager didn't even bat an eye, just put in an order for the maintenance guy to install the grab bars. Her response was really kind: "Oh, we've put in plenty of those. We probably have some on hand already, so it shouldn't take too long to get them installed."
I don't know what I was expecting really (the front office here is always so helpful and quick to take care of problems), but all the anxiety rushed out of me like a deflating balloon, and I immediately felt so much lighter.
I guess there's a part of me that always expects people to not be helpful or understanding, that their response will be something along the lines of, "Why? You don't look sick." I expect to be shot down rather than supported.

Maybe some of that comes from living in denial for so long about my health. I mean, I know I'm sick and have physical disabilities, but for the last 12 years there's always been a part of my brain that just hasn't accepted it. That side of me held to the belief that the next test or specialist or clinic would reveal my illness was an easily fixable problem, and I would be healthy and whole again. Not held back by weakness and fatigue, or having to plan my days based on how tired I am, or scrapping plans midday because my energy just took a nosedive. There was that voice in my head that said I didn't have to deal with any of this, because eventually it would just go away and I could go back to being healthy and normal.

And I think it's finally hit me and truly sunk in that I am sick and it isn't ever going to go away. I have an undiagnosed form of neuropathy, and I've been waiting for that magical diagnosis for more than a decade to fix everything...but I have to deal with this in the here and now; I can't keep waiting for "someday when I know what's wrong with me" to take charge of my health. Because there isn't some fairy godmother/doctor who is going to appear, wave their magic wand and make it all better. If I'm going to take better care of myself this year and be a stronger advocate for what I need, I have to be realistic about my health and what I can and cannot do.

I think the last 12 years have been me slowly making my way through the five stages of grief. I've cycled through the first four--denial, anger, bargaining, depression--for years, but haven't ever truly gotten towards acceptance up until now. Just because I've been able to talk about my health more openly in recent years doesn't mean I had truly come to terms with it. I can have a normal conversation about what my illness entails and not fall apart sobbing on someone, but that doesn't mean I'm anywhere close to okay with it.

I can't advocate for myself effectively if I'm not honest about what my needs are. I need to admit my weaknesses and disabilities, because how can I improve my daily life otherwise? I use leg braces to support my legs and feet, which keeps my hips and back better aligned than if I was limping around. I have handicap parking to save energy, especially in the winter when it's cold and icy and it's easy for me to slip in slushy parking lots. I get massage therapy and chiropractic care every three weeks to help maintain my muscle strength and keep my back in good shape. I take my vitamins every day, especially Vitamin D in the winter, because it helps my body function well. I'm trying to eat healthier: this month I added green smoothies to my diet, because it improves my energy levels and gives my body good fuel to run on. I pay attention to my energy levels so I don't over exert myself and get sick. And today I asked to have grab bars installed in my bathroom.

Because I can't keep living in denial.