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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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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

    1. 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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