Here I go again…

I have taken a 2 year hiatus from blogging.  Not that I was ever overly proficient but the last two years of my life have held many highs and lows.  When I last posted, I was beginning a new biologic.  It was a miracle.  I saw my ankle for the first time in 7 or 8 years!  I was elated.  Then I found out I had issues with my blood pressure.  Turns out either the disease or the medication I take for my autoimmune arthritis caused damage to my left renal artery and my heart.  I started back on the biologic when all was under control again.  I was so excited then BAM….anaphylactic shock.  Yep.  Failed again.  I knew it was a possibility but had no clue it would hit that hard.  Thank goodness my rheumy rescued me quickly.  I soon started another biologic and it’s been a mini-miracle.  I felt better than I had in years after about 6 months on the drug.  Then BAM!  Broke my leg and BAM again….so did my dog (just my luck).  To top it all off, days before the cat was diagnosed with Inflammatory Bowel Disease (just my luck) and she needed treatment.  My life quickly went from “starting to be good again” to FML very quickly.  I have to admit.  Fighting to get through each day was exhausting.  I wasn’t supposed to go back to work, but now had a $4000 veterinary bill to pay for both pets, in addition to my own bills.  I needed a plan.

My greatest issue living with various autoimmune diseases has always been asking for help when I needed it.  I suck at it.  Truly.  I fight hard to maintain independence. The reality of how isolated I made myself hit me full force while waiting for my surgery and I was alone.  Waking up from surgery, again alone.  It was my choice.  I didn’t want to bother anyone…but it broke my heart.  Having a broken leg, I had no choice.  I moved in with my parents for 2 weeks.  Had to ask my cousins to transport me b/c I wasn’t yet allowed to drive.  My dog also needed surgery and then needed to stay with my parents for over 3 months b/c I couldn’t care for her and myself alone.  Other cousins got me a loaner wheelchair.  My best friend did my laundry and took me to doctor appointments.  My bosses and coworkers pushed my wheelchair to and from my car in crazy winter weather.  Random coworkers and students would see me wheeling out of my office and would help me outside.  Many coworkers made, bought, and/or cooked my lunches.  My neighbors were my left and right hand for months.  I learned to ask for help b/c I had no choice.  I learned what phenomenal people my friends, family, and coworkers are.  I did hear one person who helped early on referred to me later as a PITA.  I now know to never ask that person for help again.  My original response was to think everyone felt that way.  I know that is not true. I’m far from good at it, but I still ask for help when I need it.

Six months of physical therapy took me from a wheel chair, to crutches to a walking with a cane, to walking solo.  Seems that the repair to my ankle helped my RA.  I think all the damage I had from RA was repaired when the bones were put back together.  My ankle still aches but not in anyway like it used to.  Seems my RA migrated from my ankles to my hands.  That’s an autoimmune disease for you.  Unpredictable.  The dog is healed, the cat doesn’t puke as much as she did.  My family is doing well.

I feel like I am at a place where I have something to say again.  Might just be musings of a crazy gal with RA, but if I can connect with someone who might be in a low place and realizes they aren’t alone…..I’d be happy.   So here come my musings…

Flashback.  Seems both Georgia (dog) and Lola (cat) enjoyed sleeping on the broken leg.  In their world, I’m furniture….and I’m okay with that.

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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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