And the winner is…..(***update)

not me….

When you have autoimmune arthritis, there are days you feel good and days you feel

pretty bad day.  Today was a bad day.  My joints are flaring so much that I seem to have lost my knuckles and gained an extra ankle…14725717_10211482203036921_2590688345808084331_n

I woke up and felt stiff and sore and had a fever.  I contemplated calling off from work but thought I could shake it off.  I pushed myself to get through work.  My friend wrapped my hand and wrist because I couldn’t type without it.  I refused to look at my ankle until I got home hours later.  I knew when I actually saw it, the pain would overwhelm me.  I guess I’m lucky I can disconnect my brain from my pain at times….but it always catches up with me.   I’ve been trying to rest tonight while deep breathing through painful cramps in my hands and feet.

I seem to be having more and more terrible rotten days.  It’s scary.  I wonder if it is the stress of working so much?  Could I be eating something that is triggering a flare?  Is my biologic drug failing??  And yes, a part of me wonders if I’ve failed myself in some way.  It’s hard not to blame myself for not sleeping longer, eating better, exercising more frequently.  I stopped going to acupuncture because I couldn’t fit it in at night.  I order out more than cook because it’s easier on my hands.  It’s time to make an appointment with my rheumatologist and have a serious talk about my treatment plan. It’s time to re-evaluate my daily decisions regarding my health.  My biologic has been a mini miracle for over 2 years but I fear it is losing its effectiveness.  I hope there is another miracle out there for me.  Time to start the search…because I’m tired of losing the daily battles.

 

****Update: After a talk with my rheumatologist.  I decided to move on from my 5th biologic.  I cried and I feel very down.  Why?  I know the drug failed me and I fear I’m nearing the end of the medications that can help me have a decent quality of life.  Time will tell… biologic drug #6 coming soon.

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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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