RA Blog Week 2019: Day 1: Dealing

FInal-2019-JPGH-badge-marked-RD-not-RAI am so proud to participate in the 5th annual RA blog week.  Today’s topic is:

Dealing – How do other diagnoses impact your RD and its treatment?

When I was diagnosed with Graves disease my endocrinologist told me, “Once you get one autoimmune diagnosis, you are likely to get a few more.”  I didn’t believe her. I learned the hard way.  At this point, I am living with spondlyarthropathy, Graves Disease, fibromyalgia, DSAP (disseminated superficial actinic porokerotosis), rosacea, and hypertension.  I’m quite a mess!

This past summer, I had some serious stomach issues.  I went through tons of tests to rule out both autoimmune and other medical issues (gallstones, etc.)  It turned out that the rosacea medication I was taking really messed with my stomach.  While going through testing, all I could think was “Can I handle one more thing?”  It’s frightening to watch my body do things that I can’t control.  It’s difficult to add one more treatment/medication/therapy into my daily routine.  I often feel overwhelmed and defeated. I need time to shift my brain into a new way of thinking, and there are days when I have to dig in deep to keep going and not breakdown.

I have determined that in order for me to survive my body, I had to do things that make me happy.  My dog Georgia is my main source of happiness.  She is also my main source of stress due to her medical needs, but her snuggles keep me going.   I also love to read, listen to music, binge watch Netflix, and to treat myself to mani/pedi when I can.  I’ve also learned that it is okay to cry and breakdown as long as you can pick yourself up again.  I can only fix so much when it comes to my body and I’ve slowly learned to deal with the impact it makes on my life.  That only happens one day at a time.

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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.

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