patient stories

Being “Old” at 13

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I was constantly labeled the ‘hard’ or ‘interesting’ case and seemed to stump every doctor I visited.

[5th grade through high school]

My story:
[Fast forward to post college] I held an IT consulting job that kept me on my toes 24/7/365. My pain came back in the form of hip pain that traveled down my leg to my knee, then to my ankle and eventually making it unable to straighten or bend my whole left leg.

June 13, 2012 I went in for what I thought would be a simple surgery (which was my 4th knee surgery). That simple surgery turned into another surgery (2 months later), tons of hospital visits, endless testing and 6 months of bed rest. It forced me to go out on disability – first short term, then turned to long term. It changed my day-to-day activities; it really changed my whole sense of normal.

Here I was, at 27 years old, out on disability while all my other friends went about living their daily lives. My life was sent to a complete halt, while everyone else’s continued to move onwards. Relationships fell apart, my mindset fell apart – it was extremely difficult.

But, just because I had a new ‘normal’ didn’t mean it had to be a BAD normal. It was just different – I had to get used to it being different. I couldn’t do everything I wanted to do, but that didn’t mean I couldn’t still do some of the things I enjoyed. Activities can be modified!

–Any memorable moments while being tested?–

 

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When I was in middle school, an orthopedic suggested I see a rheumatologist. I did and after several tests that doctor said he believed I had psoriatic arthritis. He went on to say that there were no tests that could definitively say if I had it or not. Since I was in the middle of puberty, he was hesitant to put me on an immunosuppressant. It was suggested that I treat my flare-ups with prednisone until I was forced to go on the heavier drugs.

Upon hearing this, I completely shut out the notion that I had arthritis. Arthritis was something old people get, not me.

I had stomach and fatigue problems, but no joint problems. I forgot all about this potential diagnosis and when I started having swelling and pain when I was 27, my mom brought it up again. I refused to believe it. There was NO WAY, just no way. Looking back I wish I had realized the severity of my disease back when the doctor first suggested it. I wonder if things would have turned out differently, how many surgeries I could have avoided, etc. But, you can’t live in the past. We learn from our mistakes and move on.


Sure, autoimmunity has taken away a lot of things in my life, but autoimmunity has also given me so many blessings. I’m so passionate about living a happy, positive, fulfilling life and I love to help other chronically fabulous patients see that as well.

I’ve become a certified holistic health coach, I’m working towards becoming a certified yoga instructor and even looking at furthering my medical knowledge through a masters or functional medicine certification.

-Julie


Through Julie’s journey from unbelieving girl to diagnosed with Psoriatic Arthritis and many other health conditions, she overcame a multitude of challenges. She has changed her point of view and by seeing things in a more positive light became open to new ways of healing and helping. For more on Julie make sure to check out her website!

 

How can we change the stigma around autoimmune disease, being “sick,” and “arthritis is for old people” to improve prevention, management, and well-being?

Edited By: Tiffany Simms

We are looking for Autoimmunity stories for an upcoming workshop at Stanford Medicine X. If you would like to lend us your voice, send us an email! DrBonnie360@gmail.com

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