Welcome To My New Life Fighting A Disease I've Never Heard Of Before....... Ankylosing Spondylitis

  Frustration.... such a little word but it carries so much meaning. Frustration, it is what I've felt for the past week, dealing with medical insurance renewal. Yes, it's that time of year again, choose a plan. If only it was that simple.    Having a rheumatic autoimmune disease, Ankylosing Spondylitis, entails many doctors and many medicines. Therefore, I need an insurance plan that covers a majority of what or whom I need to fight this disease. It is no easy feat to find the "perfect" plan. There actually are no perfect plans available to me.   I resort to finding the insurance plan that covers the specialty drugs I need. Luckily, that plan also has my primary general physician, my neurologist, and my opthamologist included as in-network doctors. The only doctor it lacks is my rheumatologist. Oh, and it also lacks coverage for the folic acid I need to take daily to combat the side effects of the chemotherapy drug. The chemo drug makes my hair fall out, unless ...

  I'm not sure if it's just me or if everyone experiences this, but there are days I don't want to leave the house. It can be days before a scheduled appointment or task, that I begin to dread the thought of going. There are days that I hurt and ache too much to go anywhere. Those aren't the days I'm describing. It's just a mounting sense of dread that holds me back. I can schedule something and even look forward to that event, but as the event draws closer my eagerness turns to apprehension. My mind is consumed with "should I cancel" or "maybe I can leave early". I begin to question myself as to why I even scheduled the event in the first place.    I had my annual mammogram scheduled for 2:30 yesterday. Last Friday, I began thinking maybe I should cancel. My thoughts were, I have had a mammogram every year, so I probably could put it off until next year. I mean all my prior mammograms have been clear, no lumps or cysts. Plus, my mom doesn...

  Even as my doctor says it, I cringe....      Why do most medicines have those nasty, horrible side effects?    As my doctor explains, this new medication has been known to cause or worsen, Irritable Bowel Syndrome. I'm thinking... really, really??!! She has got to be joking. Why would anyone take a medicine that can instigate another disease.   I mean, I'm no fan of stomach cramps or diarrhea. As a matter of fact, I experience that enough without the aid of a medication side effect. There are some rather embarrassing moments, I definitely wish I could erase from my brain.   As I sit there listening to her voice I'm thinking no way, no thank you. I am NOT going to use that medicine. Nope, not this girl!    At that point my doctor checks my most recent lab work. She explains my current medication isn't helping my inflammation levels. She does a physical "feel" of the joints in my shoulder, elbows, hands, and feet. A m...

  Yesterday my mom called to chat. She had been to visit my sister. Mom mentioned my sister was cleaning her bathroom walls. Which got me to thinking, I haven't washed my bathroom walls in such a long time I don't even remember it.   My clean freak of a mom would croak if she knew that. However, when I was employed I just didn't have the energy to do much housework. Basically I came home, fixed my kids a quick bite to eat, took a shower, and went straight to bed. I typically was in bed by 8 pm. I know that is crazy early but I had to be up every morning at 4:55 a.m. for work. Plus as most of you with anklosing spondylitis can relate, I had some nights of rolling and turning. Hip pain, rib pain, neck pain, and burning feet are my worst nighttime AS visitors. I wish I could be one of you super woman who work a job, have a spotless house, and are moms. I applaud each of you. I have many times felt such disappointment in myself because I can't keep it all up. My family de...

    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 ge...