Hooray! I have a disease! (Probably)

No, really, this is a good thing. I'm not being sarcastic or just trying to smile in the face of something scary. I am ecstatic about this news. This possible news. I guess I shouldn't be too excited because nothing is official yet, but the thing is that I'm one step closer to being sure about something and there are actual steps that I can take now. Hopefully. 

Twelve years a frustratingly long time to have a problem without finding any real cause or solution. 

As many of you know, I've had recurring migraines for over a decade now. For a while, we always thought that these were caused by my spina bifida (I have an extra vertebrae in my spine and it's caused quite a few weird issues, if I'm being honest), and I have tried so many things, friends. I've been to acupuncturists, chiropractors, good ol' fashioned general practitioners and one by one they've all shrugged and said various forms of "That sucks," or "it's probably linked to your cycle."

Me: But... the migraines don't consistently happen during my period."

Doctor: Yeah, but they usually do?

Me: I mean... this past one was on the last day of my period, but -

Doctor: Yup! The uterus, man. It can be a real B. 

Or this other conversation I had during which the doctor told me that she couldn't really do anything to help me unless I was having migraines for 15 days out every month, so she suggested that I just start taking ibuprofen every six hours three days before each migraine hits... which could be at any time. 

I shouldn't mislead you. They've all tried to help in some way shape or form, but the reality is that none of them have been able to figure out how to keep these migraines from coming back. 

And I will say that my current chiropractor has actually been amazing so far. He's taken the time to understand the skeletal structure of my screwed up body and how it moves. He's listened to me when I explain that it's not just hip or back pain, and then random isolated migraines. 

You see, the thing is that these migraines aren't just really bad headaches. By the time the headache actually hits, the pain will be almost rippling out from my right hip until the pressure builds up in my head, behind my right eye. My right sinuses will get clogged, my right ear will feel plugged, even the right side of my jaw gets sore and tender. Then that pain will continue down the right side of my neck, into my right shoulder, down the right side of my back, through my right hip, into my right hamstring, all the way down into my right foot. 

I have full-body mother-effing migraines, y'all, and it sucks. 

So when this chiropractor sat down and actually heard me describe all of this, for the first time in twelve years, I heard someone say something other than a dismissive comment:

"I'd like to send you in for some tests." 

Cut to a week later, I sat in a lab while they drew seven vials of blood from my body and sent them away to get analyzed. I was tested for various things, including two different types of Lyme and Rheumatoid Arthritis, which is what seemed to be the most likely diagnosis. Weirdly, however, when I got the results, it wasn't either of those things. 

The results said I was all good for almost everything except for two odd results: I'm severely lacking in Vitamin D (but I'm also a pale redhead who loves the rain, so... this felt a little obvious), and that my blood work came back positive for the gene HLA-B27. 

After some quick googling, I found out that this gene is linked to all sorts of autoimmune diseases, including Ankylosing Spondylitis

Not only does it sound fancy, but it's also LIKE WORD FOR WORD WHAT I HAVE. Seriously, friends, when I was reading the article about this disease it felt like I was reading my body's memoir. In a nutshell, AS is essentially arthritis that attacks the spine and large joints. Like hips. Or shoulders. People with AS will experience flare-ups that cause a lot of pain throughout the body and then go into short periods of remission in between flare-ups. 

There is a huge amount of potential relief that I'm feeling right now. I still need to go see a rheumatologist (I have an appointment on October 15th) to know for sure, and while this might not be my diagnosis, I feel so much closer to having an answer, and it's because someone finally took me seriously. Someone finally listened

Twelve years is a really long time to be in pain without ever having any idea why or how to fix it. 

And I've never been happier to potentially have a lifelong disease. 

Oh, and if any of you know anyone who has experienced these symptoms or who has AS or has anything to offer, I am all ears. Tell me everything!! 

 

My precious revelation

If you've been following my Instagram story, you know that I, at the ripe old age of 27, threw my back out on Monday night and have been hobbling around ever since, not unlike the evil witch from Snow White. Not when she's all "Mirror mirror, tell me how pretty I am," but when she's all old and haggard and obsessed with apples. 

All I did was pick up a book, which hardly seems fair, as books have always been my dearest friends. Although now that I'm thinking of it, I've always been pretty sure that those who I counted as close friends were also people who were most likely to be responsible for my death, so I suppose the books were just fulfilling their true purpose and keeping my life interesting, but still... not cool, books. Not cool.

So I went to go see a chiropractor. A lot happened there that I think I have to save for another blog post or perhaps for my memoir because I'm still processing some of the ridiculousness. That being said, the chiropractor was awesome and my back is feeling somewhat human again, but he basically told me that my spina bifida occulta (which I love because it totally makes it sound like I'm part of a group that worships spines, doesn't it? The Spinosaurus would be our god. JOIN US...) or even just my body in general is a genetic minefield of weirdness. Yay! So I left and I was all "THANKS, MOM, FOR TEACHING ALL THOSE JAZZERCISE CLASSES WHILE YOU WERE PREGGO WITH ME" (true story) but then the angel on my shoulder was like "Hey, she was just trying to stay healthy. Besides, her birthday is coming up. Be nice." 

So I texted her to update her on the situation and to humbly tell her how nice I had decided to be: