My story is pretty boring…but for so long, until I found this group…I really thought I was the only one w/these debilitating diseases…(I’m exaggerating of course, but that’s how it felt..lol) And not so much exagerating…I really am not sure some days how to go on…then I look at my 11 year old son…then I remember:))
I was diagnosed 2 years ago with Systemic Lupus and Ankylosis Spondylitis. My Rheumy has focused more on the Lupus…which I think she kinda dropped the ball…precsribing pill after pill…shot after shot…none of these really working. I found I was calling her almost every other week, complaining that something was terribly wrong in my hips. She then sent me for more labs…testing me for Leukimia…and a body scan which see said didn’t show much.
My mom had called one night…I was having a terribly painful night…I was actually on the floor bent over my bed…a visual i am sure..haha! My boyfriend pacing not knowing what the heck to do…But I was in such pain; I was only sleeping about 2 hours a night…and trying to hold down my job. My mom suggested I go out of network and get a second opinion, and go to an ortho doc since my major complaint was my hips and legs…deep bone deep pain (I am sure you can relate). In fact I could hardly walk; I walk with such a limp people ask everyday what in the world is wrong with me.
So I got in rather quickly to an ortho surgeon who really at first couldn’t understand why I was there. He had requested I bring any copies of X-rays with me..I did. What he saw was only 6 month old, so he wasn’t really getting it. LOL! When he asked me to walk and bend down he looked at his screen again and said..well, I guess we can do our own films and see if anything has progressed…again he wasn’t that impressed.
Well after another round of xrays…he came in with his PA and a datebook….I met a whole other man…lol! He said my disease had progressed so fast he had never seen anything like it…and he asked me…how am I walking…I just busted into tears! Finally!!!! Someone saw what I was feeling!!!! Halalujia!!! Now don’t get me wrong…I would never wish this on anyone….but I was reaching the end of my rope…almost thinking maybe I was losing it a little upstairs! ha! But he was very concerned…and switched my medications to Indomethacin and Gabbapentin.
This gave me some relief…but face it….I have basically no hips…there gonna kill me until there replaced. I am also in the process of going gluten free…increasing my fish oil..and anything else I can find that gives me hope…I’m up for anything.
And that’s where I am today…June 26th, 2012 I can say good-by to these rotted out hips and hello to prothesis…and hopefully a more mobile and pain-free life. I just gotta make it to June 26th! People ask me what about when this travels someplace else….well as I deal with the fever’s…rashes…burning unexplainable pain in other area’s of my body…throwing up when I can’t even explain why I am sick….I am just praying about my hips right now….one bridge at a time.
People don’t understand chronic pain….I have always felt like I am a strong person, I am an avid motorcycle rider, touch football and basic tomboy (hey, I have a son! ha!) this has taken me down…and fast. The pain is something I have never ever experienced…and this has motivated me…as soon as surgery is over, I want to do SOMETHING….we have to do something to find a cure for this. People should not be in this kind of pain…and expected to live years like this? Holy cow…I am 43…I have these diseases…but I can do something right?
Poker Runs…something….anyway…not much of a story, but it’s my life…and I am trying like heck not to let it consume me… Whew…that kinda felt good! Thank you for listening…and as you can probably see..I try to incorporate humor…it’s all I have! :))
Have a blessed day and again, thank you for listening!
Indiana United States of America