A unicorn on roller-skates…

This past few weeks I’ve been dealing with a horrible rheumatoid arthritis flare. It started after the holidays and has caused me to miss time from work, avoid get togethers, and greatly altered my life. I’ve also been rekindling my affair with my trusty cane. Basically, nothing fun. Last year, I felt like my meds were failing, so I opted to change. It ended up being a huge mistake. I went from bad to worse on this new drug. It provided no improvement in my symptoms. My joints were swollen, pain was intense, and I felt like I had the flu. I went running back to my previous biologic drug and for a few months, I felt much better until I didn’t.

I call her Betty

I’ve written a lot about my love/hate relationship with my cane over the years. I hated how everyone would stop me to ask “what did you hurt?” or if my broken leg from 10 years ago was giving me trouble. It wasn’t until my colleague Suzanne reached out to me and said, “None of us care if you come to work on on a unicorn wearing roller-skates” we just care abut you. I was allowing my cane to be a negative in my life. I’ve changed my attitude. Since then, when using my cane, my coworkers never focus on it, they focus on me. The cane is always in my car and I pull it out as needed. It hurts my hand, but helps me walk. Right now a win-lose or a lesser of two evils, but I prefer to think of it as my roller-skating unicorn right now.

Prior to my rheumatology appointment, I tried to rest, eat healthier, take supplements, and decrease stress. You know the thing all the “experts who don’t live with rheumatoid or autoimmune arthritis”(***insert sarcasm here) insist will cure you. Sadly, it turns out I need a large dose of prednisone to get my bad flare back under control. It will be 5 weeks of tapering followed by a search for a new treatment, possibly even returning to infusions. I’ve tried many treatments over the years, many have given me periods of decent functioning before fizzling out.

It’s all very depressing, but I’m grateful that I have a community of friends who live with autoimmune arthritis conditions just understand and can offer me advice and comfort without judgment. I often get questions as to why I share so much about my health online. It’s simple. For those of us who live day in and day out with chronic illness, it’s nice to know we are not alone.

I have my “Rheum Sisters”: Tiffany, Tami, Therese, and Deb who are my go-tos for advice and my AiArthritis family. But there are so many others who make posts on any given day and it’s like they are in my head. For example: Cheryl from Arthritis Life and Creaky Joints TikTok posted an ironic video of learning that some people in this world wake up pain free (uh, if that happened, I’d think I was dead). And Eileen from Chronic Eileen, who posted a photo of herself with red dots highlighting her hot spots. I joked to say mine who have to cover my whole body and viola….she made me this!

A great visual to highlight where the pain is located in my body. Basically everywhere.

I’m slowly getting my writing mojo back. My blog has been so focused on COVID-19 and Depression, that I had nothing to add to the world of arthritis. Well, I do. I may not be a unicorn on roller-skates, but I am an advocate hoping to help other patients on similar journeys know they are not alone.

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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.

2 thoughts on “A unicorn on roller-skates…

  1. Why am I using this cane? Did you hear about the alien attack in North Dakota? Well you see this fleet of aliens descended on Mt Rushmore and it took the entire US Army and Air Force to repel them.

    I am surprised you have not heard? Well there you go. Now you know.

    Liked by 2 people

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