Almost…

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Today was a terrible, horrible, no good, very bad pain day.  Why?  Because my pain level is almost unbearable.  My fatigue level is almost overpowering.  It’s almost amusing how hard I work just to be able to keep working.  Over the years, I’ve spent so much time and money trying new therapies to reduce some my symptoms while increasing my energy so I can continue to work.  I’ve tried diets, medications, holistic herbs, acupuncture, etc., etc., etc.  I’ve kissed many snake oil salesmen, and I always end up home at night after work, in my messy house, in pain and completely exhausted.  I know that there is no cure for my disease, but each supposed “cure” I try that fails, makes me feel like a failure.  I know realistically that I am not a failure.  Treatments fail me not the other way around, but it’s so defeating when it happens again and again.  Most people I work with probably have no idea how bad today was for me.  I tell my close friends and hide it from the rest.  I laugh off the fact that I limp and I inwardly cringe when I see my swollen and painful hands.  I always fear being thought of as a hypochondriac or a complainer.

 

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Every joint in my hand is swollen and hurts.

 

I try to be positive on this blog.  I usually  look on the bright side, but today, I’m going to feel sorry for myself.  I’m going to snuggle with my dog and kittens and watch guilty-pleasure TV while eating Chipotle.  I am going to grieve the pain-free life I want but can’t seem to have.  I feel guilty about wallowing, but today, I deserve to wallow a little bit.  Tonight, I’ll take my biologic drug before bed and tomorrow, after a high dose of prednisone and Orencia,  I hope to have a better day.

 

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Perfect way to sum up my day. Thanks sobadass.me!

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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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