It’s been another interesting week. And by interesting, I mean…holy-batman-nuggets-what-the-fuck-is-going-on-in-my-body-?-can’t-you-just-work-properly-for-one-goddamn-second-arghghghghghghgh!!!
It started as pinched nerve last Friday, only a week from the last fiasco. It was the middle of the night and I was in a lot of pain so I was massaging my upper arm with a tennis ball. I highly recommend it for back pain. I put the tennis ball between me and the floor/bed and let the weight of my body attack the knots. It’s very painful at first but with deep breathing and focus, it really helps break up the knots. So as I said, I was doing this to my arm at the time…a painful area just about my elbow on the back of my arm. The pain was receding so I took my arm off the ball and was about to go to sleep when….”Holy Shit, I killed my hand!”.
It was totally dead from the wrist down, hanging limp like a pathetic corpse. It took all the effort I had just to lift it to lay parallel with my arm. And it felt all kinds of numb. I was petrified with terror. WTF! I woke my husband who was all shades of sleepy and calm despite being rudely shook awake by his hysterical wife. He assured me that by morning it would resolve and to try and get some sleep. I complied if only because I couldn’t think of any other option at the moment. At the time, it did occur to me that I must have pinched a nerve…but it was so extreme and terrifying .
The next day, it had improved slightly…I could feel and move it similar to a foot that has fallen asleep. And though it’s improved further, even today, it’s still unable to hold much weight and aches terribly at times.
And to add to the drama, I got my latest labs back. All were awesomely healthy except for the ANA which tests for autoimmune conditions. It was the very reason my new doctor ordered the tests in the first place. Originally when I started this journey, I had the test done and came back fully negative, as one should be. But later in Seattle, a subsequent test found a positive speckled result of 1:40. This wouldn’t be concerning at all if you didn’t take into consideration the shit ton of symptoms I have that are similar to an autoimmune condition. And even with the symptoms, 1:40 is still very low and could be a false positive. So my newest doctor repeated the test (now three years later). And now I have a score of 1:160. A huge jump from the last one. And a huge big red positve answer as to why I’ve become a miserable poop head over the past few years. Lupus.
Despite Dr. House’s fervent beliefs otherwise…sometimes it is Lupus.
I am both, at once, depressed and relieved by this. It’s so strange to be relieved by a debilitating illness…but it’s been so long in the making. So many years being brushed off as a hysteric, a hypochondiac, and a drama queen. And that’s just how I have viewed myself…others have been worse, especially doctors. It’s just so nice to be able to prove that it’s not in my head. That my pain is real. My struggle is real.
But the depression is a little unexpected. I knew this was the answer before the results…but my mind is still having difficulty with it. And I’m still sad.
I called my mother when I found out. WTF was I thinking. You would think I would know better. She made me feel worse. Horrible even. Writing off all my concerns and telling me to stop being so obsessed with my health. This from a woman who’s been a product of her health for years…the woman who asked the six year old me what I would do if she had a heart attack at the wheel. The woman who claimed that our arguments were killing her…(she has a heart problem…stemming from rheumatic fever as a child. Most of my childhood, her illness and resulting “fragile condition” was drilled into my head as extremely unstable. I thought she was minutes from death for years till I was old enough to research it and found that she should have been fine…in fact she should have been exercising and living her life. Instead she acted like all stress would kill her and yet she smoked like a chimney…still does….hmmm.)
My mother should have been able to relate…but instead I think it bothers her that she has been upstaged. That she’s not the only one with a condition now. She is so fucked up. Like I’m competing. Like I’m using it to get attention, like her. Fuck that. I’m just a little shook up. But now I can just move on. It’s certainly not going to hold me back. I will learn to work past it. It still fells me occassionally(a lot lately, unfortunately) but I still blog, create, parent, love, exercise, and live. And I will only get better since the puzzle is solved. I can stop searching.
I say that a little prematurely though. The ANA is not enough for the official diagnosis. I need to see a rheumatologist to confirm it…and that terrifies me since I have has such bad luck with them. And then there’s the brain MRI at the end of the month to figure out what’s in my brain(that’s a whole other post). That’s also anxiety inducing. But I see the light at the end of the tunnel. After July, I should be able to move on. I will still be sick. It will always be with me. But the journey to diagnosis that has lasted the past 13 years is almost at an end. I will have that part of my brain again. No more google searches. No more studying the medical archives. No more symptom lists and new doctors.
I can’t fucking wait.