What was your life like before you received the COVID-19 vaccine?
I was a very active 54 year old happily married mom of three boys who loved to travel, garden, cook, exercise and entertain. I was super excited about starting a business after the last 28 years were spent raising my wonderful boys as a stay at home mom.
Describe the symptoms and the timeline of the reaction.
I first received the Moderna vaccine in March 2021 in a CVS in a rural area of Virginia. I waited with my husband the 15 minutes required before we jumped in the car ready to take our youngest to lunch who was a freshman at Virginia Tech. My face started to swell and felt “”frozen”” as soon as we got in the car… 21 minutes following the injection I could not swallow my own saliva. We drove to a pharmacy thinking Benadryl could do the trick but while my husband was in there my heart started beating out of control. I texted him HELP and he ran out and drove directly to the ER. I was immediately given IV steroids and Benadryl. That was the beginning of this nightmare. The following months I lost hair, had extreme issues swallowing without water due to lack of saliva, high blood pressure (157/93), racing heartbeat, eye pain due to no tear production, toe nails and finger nails started to lift. In April 2021, I went to an Immunologist at UVA who said it would be safe for me to get the J&J vaccine in June. Additionally my PCP prescribed Cylexa for anxiety and an anti fungal for toe nails as well as a high blood pressure meds. I then (foolishly) got the J&J on June 17th, 2021. That evening I had extreme shakes for 5 hours and that is when my nightmare worsened. My feet began to hurt so badly upon rising that I moaned and could not walk to the bathroom without extreme pain and shuffled like Fred Flintstone, toe joints swelled, my fingers started to trigger at night, my eyes got even worse and fatigue was through the roof. I went from being a super active mom with a busy schedule to napping every day hours with no relief from the fatigue. I explained it as I had no choice but to lay down as my body just had no energy left, so my drive and mind over matter normal attitude did nothing with this extreme onset of fatigue. I have diagnosed with Psoriatic Arthritis, Rheumatoid Arthritis, Sjogren’s syndrome – all severe in nature right out of the gate. Not typical, at all, for someone to have all of these issues/symptoms and all at the same time.
Describe the solutions that helped your symptoms
So here I am 2 years later having been seen by doctors at Johns Hopkins, Mayo in Rochester and UVA. I have suffered with many “”wrong”” medications and their horrible side effects and I am finally on my sixth medication/third biologic and am feeling a bit of relief. I went from being on a ˝ of a Lipitor every day to 8 medications daily just to help minimize some of the horrible side effects of the vaccine. I would say I am about 75% back to myself and at my worst I was hanging on at 25%. Today I am on Cosentyx, Neltrexone, Meloxicam, Cevimeline, Vagifem, Tyrvaya, Restasis and serum tears made from my own blood.
Which solutions were not helpful?
Sulfasalazine – caused extreme anemia Humira – had a reaction that caused a Lupus induced rash Enbrel – worked a little at the beginning then stopped so they added in… Methotrexate – I went down hill. My rheumatologists upped my dose and I got even worse. Pilocarpine – I switched to Ceviimeline which has been better
What would you like others to know?
I would say that going this road alone with doctors who are operating “”in the dark”” about the known side effects of vaccines is SO WRONG! It is lonely and we need to stick together so that in numbers the truth will be out there and that our experiences with finding answers can help others get there sooner. For two years, all I did was work on finding answers and planning my next course of action. At my worst, I worried about my future self not being present for my kids/grandchildren and spouse of 30+ years. The financial burden is real. The stress and loss of years is still on going.
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