Chasing Bigfoot…

When I tell people I have rheumatoid arthritis, I get one of three responses:
1. “I have that, too! It’s in my knee/shoulder/hand!.” (they have osteoarthritis, not RA) 
2. “You are too young for arthritis.” (uh, my symptoms started at 14)
3. “You look great! You don’t look sick at all.” (I feel like I live with the flu…)

It’s exhausting trying to explain the different types of arthritis that exist and that mine is autoimmune, meaning it’s systemic and affects more than just my joints, but my skin and unfortunately, some of my organs have been involved, too.  This week I had to breakdown and wear a splint b/c moving furniture caused my wrist to flare.  Someone made the comment that I am always injured.  In that brief moment, I wanted to explain, but do people really want to know I have a disease that is destroying my joints?  That is why I wear splints intermittently, limp, and look like I haven’t slept in ages.  Someone asked once if I was in an abusive relationship (after observing my swollen and red joints).  I had to laugh at that one because it is my own body that is beating the crap out of itself.

Of course, I also get told about all the “cures” that I simply must try.  When I tell people that I tried gluten free and I felt no different, I was told, ‘You didn’t try it long enough’.  When I tried apple cider vinegar, salt water cure, elimination diet, meditation, acupuncture, yada, yada, yada….I was told I must have done it wrong, b/c it makes people feel GREAT! I’ve written previously about how expensive it is to be sick….it’s overwhelming….but it didn’t stop me for shelling out a chunk of money to try essential oils last week.  If it can help me decrease fatigue, I’d be thrilled. Time will tell if it helps or not….

Why do I try all these cures??  Because I want to be healthy again.  I want a normal body that can walk downstairs in the morning without feeling like my ankles are shattering.  I want to travel and walk around sightseeing without intense pain.  I want to be able to go to the supermarket after work and not struggle to get my groceries off the shelves.  I chase the cure because I don’t want to give up the dream.  It’s almost like chasing Bigfoot.  A cure doesn’t exist for my disease, but it doesn’t stop me from hoping to find it someday.

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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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