Is Ankylosing Spondylitis Even Real Words

    Finally after years of joint aches, inflammation, fatigue, and chronic pain I had an answer. But what the heck did they say I have? I sit silently taking it all in, trying to focus on what I'm being told. To be honest, I don't think I heard a fourth of what the NP told me after that strange sounding name of the disease. Here I am with an answer, THE answer. Is it wrong to feel relief? Happiness? How can I be happy, I just learned I have some weird sounding disease. Yet the flood of relief is overwhelming.

     I think I may be taking this news oddly compared to other sufferers. Sitting in that little exam room all by myself, I have learned the pain is legitimate. I have suffered this so long without answers at some point I began to wonder is it all in my head. Is what I'm feeling real? I certainly know I hurt but could my mind be controlling all of this pain. I have told the long list of doctors what I experience. Some of them seem to listen and have a genuine concern, but on the flip side is those who look at you like "another pain pill seeker". Until 2014 I had no medical insurance, which I believe adds to the stigma because they cannot understand the fact that I have suffered for years without seeking a specialist. If they had cared to listen I could have explained but you can't explain something to someone who doesn't want to hear. 

      At some point, I hear the NP tell me it is a lifelong, debilitating disease. Wait, lifelong and debilitating? What exactly does lifelong, debilitating mean? In what seemed like time standing still but in reality was at most a minute, my mind thinks death before my kids are grown. I see an image in my mind of me in a wheelchair, dependent on my family. I assume the NP could see the fear in my face. She slowed down considerably and explained what these terrifying words meant. My disease will never be cured. It will be my companion for the rest of my life. This strange sounding disease will not be a gentle companion, it will continue eroding, fusing, and trying to destroy my body. It is an autoimmune disease. Basically my immune system sees my own body as a foreign invader, my immune system decides it will destroy anything that isn't "me". If only I could open my immune system's blinders and say, "hey, that's my spine, my hips, it's all me!" There is a battle going on inside me. No wonder the fatigue can knock me out for days at a time. 

     My NP says the rheumatolgist recommend I begin methotrexate immediately. Take 6 methotrexate pills once weekly. Pick a day. Okay, I pick Sunday. She says every Sunday night take 6 of these pills all at once. What is methotrexate hits my lips, but the NP is already explaining. Methotrexate is a chemotherapy drug used in treating my type disease. I am in shock at this point, I mean the serious has been put in seriousness. I have a disease so formidable I need a medicine used in chemo. This is real. I am sitting here in this room and this is real. So, how long will I be taking this chemo drug? Indefinitely. Indefinitely? Will my hair fall out like others on chemo experience? Yes, but that is why they prescribe the use of folic acid in combination with methotrexate. Apparently some really smart person discovered folic acid pills taken daily can slow the hair loss. I have really thick hair so the NP thinks with the folic acid my hair loss may not be evident to other people. I think to myself, why am I sitting here worried about my hair? Shouldn't that be one of the last things I am thinking about? 

      The NP finishes all her dialogue and asks in a cheery voice, any questions? Umh.... I say I'm sure I will have many questions but the only one I can form right then was, "can you write that name down for me?" She states of all the questions she's been asked when delivering a diagnosis I am the first who has asked that question. That's the way my mind works haha. She graciously writes the name of the disease I am sharing my life with on a little piece of paper. I hold it in my hand like a treasure while saying my goodbyes, checking out at the front desk, and scheduling my next appointment. 

       I walk to my car where my 19 year old son is waiting to drive me home. I get in the car and we begin our drive in silence. My son casually asks what the doc said. I say she told me the name of the disease I have. My son asks what the name is, I start to cry. I said, "I can't even say it." Through tears I share what I can remember of the information. After calming down, I call my 22 year old daughter at college. She anxiously asked what the dr thought was going on with me. I said "I can't pronounce it but I'll spell it for you." I proceeded to spell the two words. My daughter asked me to repeat the spelling. After spelling it to her a few times she said something that made me laugh. The first laugh I had since finding out my diagnosis. 

      My daughter asked, "Mom, are you sure that's even real words? It sounds like made up words." 

      A-N-K-Y-L-O-S-I-N-G   S-P-O-N-D-Y-L-I-T-I-S

      It really is real words!

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