We’re not gonna take it anymore….

I have a disability, but I’m not disabled.  To people living with chronic illness, this makes perfect sense.  To people who are not “spoonies” or living the chronic life, it doesn’t make any sense.  I have a disability called polyarticular spondlyoarthropathy-NOS (not otherwise specified).  Most people have no idea what that means, so I just say that I have rheumatoid arthritis (RA) or autoimmune arthritis.  As soon as I say that people respond with, “Oh, I have that, too.”  People hear “arthritis” and assume osteoarthritis.  Osteoarthritis and autoimmune types of arthritis are simply not the same.  Don’t get me wrong, all arthritis is painful.  Osteoarthritis is degenerative.  The joints wearing down over time from use.  Autoimmune arthritis is quite different.  This type of arthritis exists with an autoimmune disease component.  It can attack not only the joints, but skin and internal organs.  Autoimmune arthritis causes severe fatigue, fevers, and the notorious “brain fog”.  Osteoarthritis does not have this autoimmune component.  Medications do help slow the progression of my disease, but I’ve never found a medication that treats all of my symptoms.  Fatigue and brain fog remain my nemesis.  I struggle daily with trying to act normal while wanting nothing more than to fall back into bed.

I’m not gonna take it anymore!

Most days, I can handle the symptoms but what I can’t always handle is the constant questions, comments and misunderstanding associated with my disease.  Recently a family member made a snide comment when I mentioned how hard it was for me to drive a long distance after a full day of work.  He doesn’t get it.  Most people don’t and think I’m just a complainer.  The funny thing is that I rarely complain.  If people only understood the toll this diseases takes on me emotionally, physically and financially, maybe things would be different.  I don’t want sympathy, just understanding.  People close to me get it but awareness & understanding with the general public is minimal.  It’s frustrating and disheartening.  It makes me angry.  I want to see it change.  

This desire for change is the reason I so love to be a part of World Autoimmune Arthritis Day (WAAD).  WAAD16 is an online experience, aiming to share resources from all over the world and raise awareness about autoimmune arthritis diseases.  It is an event that includes non-profits from all over the world who participate in a virtual “race” in which valuable educational materials and resources are shared regarding dozens of chronic illnesses.  Some participants this year are:  The Arthritis Foundation, National Psoriasis Foundation, American College of Rheumatology, EULAR, Spondylitis Association of America, IFAA and many more.     

Non-profits from around the world participate

The event takes place through the WAAD website: and through the WAAD Facebook  and Twitter @WAutoimmuneAD  pages.

Official Guinness Book World Record Attempt

As patients we need to stand up and let our voice be heard.  During this event, IFAA is going to be attempting a Guinness Book World Record with the most pledges during a health campaign.  Join us, make history, and let your voice be heard around the world!  Sign up and make your pledge today!  Learn more here:  http://www.ifautoimmunearthritis.org/guinness-world-record-attempt.html

WAAD16 begins on May 19, 2016 and runs through May 22, 2016.  The Guinness Book World Record also begins on May 19 and runs through June 7, 2016.  This fun event provides resources regarding dozens of illnesses, chats with patient advocates, bloggers, doctors, and other non-profits, and the “virtual race” that supports the non-profit of your choice.  Join us for this event!  I’ll see you there and remember #AllArthritisNotCreatedEqual.

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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.

3 thoughts on “We’re not gonna take it anymore….

  1. I also want a refund on my body. I am thinking it will be a long time coming however. I checked in all week this week on the proceedings and things looked like they were going very well. I was participating in Diabetes Blog week but i have really enjoyed the writing all week.


  2. Until I read this article, I am one of those who would never know the difference when it comes to autoimmune disease and arthritis. What I think is brave is the fact you turned your feelings and emotions into something more positive by joining the World Autoimmune Arthritis Day foundation and using your voice to make the world more aware.

    Leonardo @ U.S. HealthWorks Medical Group


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