Starting Story

I am proud to participate in the 2nd Annual RA Blog week.

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When I was 14 years old, I woke up one morning and my knee hurt. Hurt to walk, hurt to bend, and even ached when I was sitting down. Funny thing was that I didn’t have an accident, I didn’t bang it. This pain was there for no reason. I complained enough over a few weeks that my parents took me to an orthopedist get it looked at. I believe at first, I was told I had growing pain. When the pain became chronic, I was told it was tendonitis. I had to take ibuprofen and wrap my knee. I remember spending my summers on crutches, miniature golfing with my friends and hobbling around the mall. I always had the feeling that people thought I was faking it. I knew I wasn’t, but there never seemed to be a reason for my sore and swollen knees.

In college the flares would come and go. I had to walk a lot on campus and it took its toll on my knees. By my junior year, an orthopedic doctor suggested surgery. The MRI was unclear, but he was sure there was a tear. Well, guess what? There was no tear. I was told there was some scraped ligaments from a sharp end of my kneecap, but otherwise no tear. I was told I’d be good in 2 weeks. Well, two months later and I was still limping and in pain. My mom called the surgeon and he said some people take longer to heal. The whole time I had a disease ravaging my connective tissue but no one identified it.

In my early twenties, I was taking classes again and working full-time. I remember being at work and unable to pick up a carton of milk to pour for my preschool students. I ran a fever daily and was in so much pain that I could barely function. The word fibromyalgia was mentioned but I don’t recall being given a definitive diagnosis. My mom called me at work to tell me all my blood work came back and my doctor said I was as “Healthy as a horse”. My mom was thrilled, but all I heard in my mind was “Everyone thinks you are a hypochondriac”.   My doctor told me that I had a hard time handling stress and I needed to work out more. I blamed myself for all of it. I even dropped out of school and moved to Florida to get away from people who thought I was faking it.

The next few years passed with bouts of flare ups in my knees. In 1999, I was diagnosed with Graves Disease (a hyperthyroid disease with an autoimmune component). The process of Radio Active Iodine caused me to spiral with my thyroid levels. I swung so far into hypothyroidism that I began having severe shoulder pain.  It went away when my levels evened out.  Two years later, I began having a similar pain in my shoulder.  I ignored it for a month thinking it was my thyroid.  The pain never went away and became so debilitating that I could hardly drive.  It all started in March of 2001 and it wasn’t until December 2001 (after 3 rheumatologists, a chiropractor, a general practitioner, and a holistic physician) that I was given a definitive diagnosis of Sjogren’s syndrome and most likely RA.  It only took 17 years to have someone tell me that I was not a hypochondriac!

In the years that followed the onset of disease, my diagnosis has changed a few times.  It’s been a long and painful road over the past 16 years.

To read more starting stories posted during RA Blog week go to:  http://radiabetes.com/blog_week16/day1.html

Looking forward to a great week!

 

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4 thoughts on “Starting Story

  1. Kelly, I can tell we both have a love of learning and education.

    I was struck reading your blog because it reminds me of a friend i have in the diabetes community who was just Dx’d with Graves disease. I often think that we have so many connections int he autoimmune community. My friend and I both have Type 1 diabetes, she has Graves, I have RA you have RA and Graves. We are truly more similar than not.,

    Thank you for blogging with us this week !!

    Like

    • I’m thrilled to participate! Also, I was mentioning to IFAA that I was participating again this year. Were you at the ACR in San Francisco? Someone said that they thought you had stopped by. If so, I’m sorry I missed you! I always have to leave a day early due to work. I will be at the ACR in WDC in November.

      Like

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