What was your life like before you received the COVID-19 vaccine?
Functioning adult like everyone else I guess lol ! I have two amazing kids that I adore and I had a career of about 17yrs at our Local Hospital that I loved but didn’t love sometimes? But then loved the next day again? I enjoyed waking up and having my morning coffee and being able to get ready to start my day pain free or without the task of having to rush and clean myself up bc of my now incontinence or tremors or shakes. I enjoyed a good morning stretch bc it felt great! Not bc I had no choice but to do it or I literally can’t get my body to unlock and move after sleeping. I miss not being afraid to leave my house and go out to eat or go to the store and not fear a stomach ache. I used to love a good road-trip and thrift stores and goodwill stores to treasure hunt but that got taken from me bc I have to stay fairly close to home bc of my body now. It has been since my Allergic reaction in September of 2021 after I had my first dose of Pfizer. Ultimately I got let go of my job anyways bc I became too ill to return. I lost the life I had before just like so many others.
Describe the symptoms and the timeline of the reaction.
Anaphylaxis allergic reaction that caused respiratory failure and collapsed lung which triggered an autoimmune response in my body. That autoimmune response created hemiplegia to my rt side due to myelitis from a reaction very similar but not as severe as Gillian barre syndrome. Skin biopsy confirmed Small fiber neuropathy, inflammation neuropathy and I have peripheral neuropathy along with disautonomia, autoimmune dysfunction, cardiomyopathy, pericarditis, alopecia fibromyalgia, DEPRESSION AND ANXIETY , Mood disorder ( since getting frustrated after initially being medically pushed aside lol ) and just since the last three weeks we have found a 5 cm Mass in my pelvic area and I was just diagnosed with rheumatic disorders of both the mitral and the tricuspid valves. I believe I am going on 18 month now.
Describe the solutions that helped your symptoms
Prednisone, gabupentin, zanaflex which is a muscle relaxer , learning calming techniques for my self along with my own self care and education and under that while we are raised to believe that when we are sick or hurt that all we need to do is run to a doctor and they can help fix us , this is just not that type of situation. First off , coming as someone who worked on the inside when Covid hit and knowing and seeing just like everyone else the Mass fear and divide it created.We are treated and silenced as if we are Anti Vaxxers when that is not the case bc Covid became such a Hysteria. What was happening to all of us has been silenced except from groups like yours , so finding individual doctors to listen and treat openly and transparently is still difficult at times which has made it too late for a lot of us. But Thank to all of you still pounding the pavement and working hard to be our voices, the research is showing and the medical field is seeing that we are real too!! And we need help too!
Which solutions were not helpful?
After my allergic reaction to Pfizer I started to have reaction to some medication they kept trying to put me on to help and my body was reacting badly to each immune suppressant medication.
What would you like others to know?
Keep talking, Keep fighting for your health, you are not alone, you are not crazy, what has happened is very real, be kind to yourself and be patient bc soon more doctors will understand. They are starting to finally see . Just hold on my friends. You’ve got this! We’ve got this! Thank you React19 and everyone on your team for being our Backbone and helping us all!
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