Crash…

Since the Coronavirus Quarantine, my body has been on a high. I’ve been feeling good. Working from home has greatly improved my joint pain. It’s something my rheumatologist has been asking me to do for a while….work less. Although, I’m not working less, per se, I am working with my legs up, less walking, and I am resting. Granted, my night sleep is still messed up, but I take naps during my lunch hour. I can’t tell you how that has decreased my pain. I still get that immense fatigue during the middle of the day. At work, I push through it. At home, I lie down for 30 minutes and feel so much better for my afternoon appointments.

Things have been so good that I began walking. A lot. As I walk, I would be shocked by the fact my hips and back ached but my ankles and foot felt good. I’ll admit it, I got cocky. I got up to 4 miles a day and was feeling good. It clears my brain and has helped me deal with missing my Georgia Grace. This week, I felt like I was walking in molasses. There wasn’t a lot of pain, but man each step felt slow. Pretty soon, I started to run that low grade fever. My shoulders ached and my brain fog was making even the most mundane things feel difficult. I feel like I have the flu. I’m flaring. I’m trying hard not to need a shock treatment of steroids to get things under control. I’m going to take my biologic drug and hope that sleep and meds bring me back under control.

For a brief period in time, I wondered if I was in remission….or starting my way towards remission. This systemic disease sure knows how to not only crush your body and times, but crushes the spirit and mind as well. Not a ton of swelling with this flare, but the flu feeling was overwhelming. My best friend right now is my bed. I have been taking up to 4 naps a day to keep the fatigue at bay. I woke up Tuesday morning with pain levels that were through the roof. The pain was so bad, that I knew I had to make a trip to either see my rheumatologist or go to the ER for a shot of cortisone. I hate it, but it’s helped in the past. My rheumatologist squeezed me in at the end of the day, and for that I am grateful. I was diagnosed with bursitis in the posterior side of my shoulder, and tendinitis in the anterior side of my shoulder. The treatment, not just one but two shots of cortisone. I’ve had two shots before but in separate joints. Two shots very near to each other…….OMG. I honestly don’t know how I drove home. The pain increased and increased as I drove home. By the time I parked, I had to use my left arm to put the car in park. I never had a bad reaction to a cortisone shot before. I felt intense pain, nausea, and fatigue. Two days later, and the symptoms are still here but not as intense. My range of motion is improving slowly. I’m hopeful it will heal.

I started out this month on such a high. Feeling like remission might be something attainable, the CRASH and burn. It’s depressing, but it’s my life. I haven’t taken pain meds or anti-inflammatory meds in so long and now I am taking them as prescribed. Two steps forward, three steps back…The chronic life never ends.

On a lighter note last week marked our World Autoimmune Arthritis Day #WAAD. It was an honor to be included in this group of amazing patient advocates. The patient voice is important. Don’t ever hesitate to use your voice. Scroll forward to get the video started.

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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.

4 thoughts on “Crash…

  1. Hey Kelly, who is that goofy guy in the picture? He seems pretty odd to me, i don’t know. I’d get rid of him.

    Hey I hope you are feeling better these days. I hope that life will soon be back on track and maybe there will be remission in your future. .

    Liked by 1 person

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