Make mine a double…

I’ve been having a rough time with my autoimmune diseases lately.  I’m chronically tired, with swollen and hot joints that seem to move around my body without much rhyme or reason.  It’s exhausting.  My rheumy wants me to start taking Enbrel twice a week.  I’m really not sure that Enbrel is the biologic for me.  I don’t get that jolt of energy like I did with Humira.  The shots are so very expensive that I feel bad taking them if they are not doing the trick.  My rheumy wants me to call and let her know how I’m feeling in two more weeks.  So far, the double shot per week is not the right cocktail for me.  I haven’t done laundry or taken my trash out b/c the thought of walking down the stairs too many times is almost painful to think about let alone physically do it.  Oh well….trash pick up comes again next week, too….

Gearing up for the first World Autoimmune Arthritis Day.  I’m proud to be a member of IAAM but right now, I’m too tired and foggy to be much help.  The good thing is that they understand how it is b/c they all live with a form of the disease.

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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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