Like a Needle in a pandemic…

I’ll admit that the idea of a COVID19 vaccine made me nervous. I am the type of person who never gets a new product when it first comes out. I always wait until bugs are worked out. My initial plan was to wait it out to see how it goes. Obviously, if you’ve read my previous blogs, you know that COVID has impacted my family in the worst ways possible. Suddenly, I felt like I had no choice but to get the vaccine. The first thing I did was contact my rheumatology office to get their advice. Second thing I did was talk to my friends who also live with autoimmune arthritis diseases (I call them my rheum sisters). Then I had to wait until the vaccine became available for me. I got my vaccine 5 days ago. I had a mild headache and “off” feeling the night of the vaccine. The next day, my arm hurt (honestly, no worse than my RA pain). There were really no negative side effects. My second vaccine is in 3 weeks. I will post a follow up after that dose.

The vaccine has become a political issue for many, so I haven’t posted about it too much on social media. Honestly, I don’t want to have to defend my decision to get it (I know people who genuinely think the government is putting a tracking device inside us) and I have no desire to debate with anyone. I am also in several social groups on social media. One of my favorites is for a romance author’s fan group. This group chats about books and generally supports women for being rock stars in all aspects of life. It was in that group, that I saw a post of a nurse getting her COVID19 vaccine. Her mom posted it and said , “Look at my rockstar daughter. A COVID nurse who is now getting her vaccine!” People posted various comments, but I saw one that said, “I have Lupus. I’m really hoping I can get the vaccine.” Now I am hesitant to share medical advice because I am not a doctor, but I did respond and say, “I have RA and I reached out to my rheumatologist and I was told there is no reason for me not to get the vaccine.” Needless to say, this sparked a whole mini conversation. Some RA patients posted that their general practitioner told them to get the vaccine, while their rheumatologist told them not to. The reasons for not getting the vaccine ranged from:

“It’s not FDA approved” (Not totally correct, it does have emergency authorization)

“There is not enough data to support it” (true but are other factors to consider if it is safe or not)

“I heard I’d have to stop my medication and that scares me” (Not all patients have to do that)

“I had a reaction to my biologic drug and I don’t want to risk it.”

“It came out so fast, I don’t trust it”

“I heard that because of my immune system, the vaccine will have no effect on me.”

Needless to say, the messages were so mixed that I found it concerning. I reached out to my non-profit cofounder from AiArthritis, Tiffany Westrich-Robinson to see what she was hearing from other patients around the world. We decided it was time to do a podcast on AiArthritis Voices 360 Talk Show to discuss this issue. Tiffany reached out to her rheumatologist, Dr. Alfred Kim from Washington University in St. Louis, and together the three of us had a heart-to-heart conversation about questions, concerns, and mixed messages surrounding the COVID-19 vaccine.  You can listen via our website or download it from your favorite podcast platform. I think you will find it enlightening. I learned a lot and feel much better about my choice to get the vaccine to protect not only myself as a patient, as an educator working with children, but most especially as a daughter protecting my mom who has severe COPD.

Click the photo to access the podcast.

Please join the discussion in our COVID-19 & AiArthritis group on Facebook where we share facts from reliable sources to help patients figure out the best path for them during this pandemic. It can be so confusing trying to get the right answers even from medical professionals. Join us as we navigate facts vs. fiction.

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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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