First Dose of Pfizer on 12/06/20 Lot #EH9899
San Diego, California
37 yrs old
Q: What was your life like before you got the vaccine?
Pre-vaccine, I was a critical care ICU RN at UCSD, working on the front lines of their covid ICU. Outside of my career, I was an all-star athlete. Worked out about 6hrs a day on my days off… for fun! Played in men’s basketball leagues, played women's beach volleyball, daily tennis, golf, and a typical gym rat … you could find me on any set of wheels (rollerblading, skateboarding, biking) from sunrise to sunset…. Or chasing storms and snowboarding all winter. I was never home. I was never on the couch watching tv. I thrived with high energy, motivation and endless amounts of goals I used to set. I learned to DIY to upgrade my home. During the pandemic, to get my mind off the pandemic, Isolated, I worked on my own car, and also learned woodshopping techniques. tuned up my plumbing and basic handyman skills. I LOVED my life.
Q: Would you like to share your reasons for getting vaccinated?
As a single, mid 30s, no family/kids registered nurse seeing the worst parts of this pandemic inside an ICU… I was HONORED when my supervisor asked if I wanted to be amongst the first team at UCSD to get vaccinated. This was me. FIRST in line. I thought I had “nothing” to lose… and the end of a pandemic to gain. Little did I know I had EVERYTHING that I have ever worked for in my entire life to lose…
Q: What was your reaction, symptoms, & timeline?
By my drive home from the vax, I called my coworker asking if her face was numb too (which it wasn’t) and that I felt like my entire left side of my head was numb/tingling… ear/eye/face and my left arm was instantly weak. 12 hrs later.. I spiked a 104 temp. Fever chills rigors. Flu-like body-aches but extreme. I can handle pain, but this type of muscle/joint/bone pain was different. Made me restless and weak.
That first week the only time I was out of bed was to Crawl to the bathroom… constant nausea/vomiting/diarrhea with vertigo, low bp, high HR and the feeling I was going to pass out at any time of day. Unbreakable High fevers. I was withering, unable to eat, lost 10lbs that first week. Experiencing a malaise/fatigue I had never had before… and felt like there was a cloud suffocating my brain, a brain fog like never before.
In the first 15 days, I struggled with a chronic lingering debilitating headache and two migraines. I was unable to think straight, there was a heaviness to my soul. My brain and body felt like a heavy blanket was keeping me down… I could barely move. a total 20lb weight loss. I had the worst back/pelvic pains. Lower extremity weakness.
At some point I realized my hands were ICE cold blue. Joints looked swollen, fingers looked frail. And I couldn’t feel anything on my finger pads. The first doc said I had carpal tunnel… painful, BLUE, swollen with arthritic pains… refused to order labs.
2wks later, it’s Jan 2021. I request another doc for my hands. The pain would wake me. The iciness was making me think I was losing the use of my hands… once I could get blood flow to the digits , the intense pain that would come with it made me question if it was worth it (aka “screaming barfies” to climbers) … and then the new fluid filled pustules started… 2nd doc said it’s Raynauds phenom.
A wk later I got in to see a rheumatologist. Hand X-ray - normal. My hands were ice, with open papule/blister wounds, swollen/painful joints. A loss in grip strength snd extreme muscle fatigue (aka dead arm feeling) she diagnosed Raynauds.
Entering February2021. I got a 2nd rheum opinion, a derm appt, and neuro. Extreme fatigue, brain fog, short term memory loss… tinnitus, tremors, fevers… balance issues, vertigo, low blood pressure and days I’d get fainting spells… I’d pass out 3-7x , living alone. I was scared… new set of docs started steroids. Topical creams, and vasodilators to improve blood flow. Skin biopsies off my hands showed chilblains (but they said it was not lupus) it was “covid toes…” I’ll be fine in a couple weeks… neuro says inflammation of the left trigeminal nerve would cause my facial parasthesia. And A dx of small fiber neuropathy is likely, though it’s unnecessary to biopsy again bc treatment is the same.
March: rheum starts hydroxychloroquine, nifedipine and gabapentin. Still with low blood pressure. Neurodeficits, extreme fatigue and generalized joint/bone/muscle pains… I requested an infectious disease/immunology consult. Which backfired into meeting the meanest doc I have ever encountered OVER THE PHONE! She yelled at me for wasting her time , asked why I haven’t gotten my second Pfizer shot yet, and stated that I’m not allergic to vaccines Not sure where all the agro accusations came from. I just wanted to know why my body was so inflamed. I’ve been running fevers, head to toe rashes and edema, random red face flushes … holistically, wouldn’t anyone want to find out what could possibly be causing all of this?
March and April was full of weight loss, nausea/vomiting/diarrhea from the new meds (?) still unable to process things, trouble word finding… facial edema and rashes derm said was steroid acne. And my hands were still ice blue, no circulation, numb but painful all in one… and then my heart broke.
April. I called 911 3x. I was ready to say my goodbyes. My HR was 200-220s. As my BP slowly kept dropping… as my watch slowly kept counting how long it would take someone to find me. Alone, in my home. 25mins later. My heart rate broke from 220 to 170. My blood pressure 60/30 to 80/40. I survived. Cardiologist puts a 2 wk holter monitor on, while stating he sees evidence of microclots to my digits diagnosing pSVT and POTS. Explaining my HR in the 200s and my frequent fainting spells. Orders a high salt diet, compressions and a beta blocker. So thankful for this beta blocker…
April into may, rheum and derm want to start methotrexate. My brain, hands, skin and joints all look worse. I get a third opinion… it’s classified as a chemo drug. All 3 docs say yes to MTX.
May I’m desperate. I’m ritually seeing a therapist, an acupuncturist, a massage therapist, eastern meds / western meds. Symptoms brain fog, fatigue, tremors/tinnitus, N/V/D. Chronic headaches… methotrexate caused higher fevers, worsened the fatigue and all neuro symptoms. I was unable to drive now. Severe Diarrhea, severe hypotension had me getting IV fluids. Tachycardia had the doc increasing the heart meds.
June: doctors change mtx to Leflunomide… with hopes of less side effects, I’m hopes to put back some weight and life into me. I also switched my entire team of docs at this Pt. I’ll never understand how a doctor is totally ok w their once perfectly capable patient, being bedridden.. and not thinking anything’s wrong. A new set of labs (that the first two docs missed) blessed me with a new diagnosis of Antiphospholipid Syndrome, a blood clotting disorder… ASA325 was prescribed with cialis for vasodilation. Protonix and Pepcid for freq regurge and New GERD symptoms. June was filled w worse symptoms all mentioned above. July and Aug were revisiting neuro problems. My lack of memory , difficulty word finding, and brain fog made me sit back and realize… I may have lost my career over this…. The facial swelling, blue hands papules/blisters continue. Sept was when I have my first few days feeling good (after another steroid pack boost) my brain cleared up, my face and hands felt better… but as soon as it wore off, I was back to post vax baseline.
Spent all fall in and out of flares. Some good days, some bad… you never know what you’re gonna get til you wake up. It’s been frustrating.
1 year later. Dec. 2021. I have transferred my care to UCSD, finally approved by insurance after many problems… rheum/derm/cards/neuro/inf.disease and their long haul covid clinic. I am excited for a new set of eyes.
Q: What is your life like now, after getting the vaccine?
My life is a mystery now. Will I wake and feel great and have energy? Will I wake and have a debilitating headache or zero muscle strength? Will I be able to perform THE MOST MINIMAL day activities? I am unable to tolerate any type of workouts. When I attempt increase My physical activity, I get flu-like fevers/aches/symptoms for the next 48hrs. I lost my vision for a couple days, and they found micro emboli in my optic arteries. Thankful my vision came back.. but, how can you not wonder if the next clots will go to my brain? My heart? Keeping mental health is an obvious struggle but so important right now. I never thought I’d say my goodbyes at 37… to a 911 operator. I was a high adrenaline outdoors junky, that’s where I’m supposed to say my goodbyes… on some backside of the largest mountain.. Not laying at my front door staring at my ceiling. I want to be able to live my life to the best and fullest. I spent my 37yrs of education, life experiences and travel to create and build a lifestyle of my own that was meant to be lived in long healthy peaceful life, immersed in different cultures and countries, experiencing true meanings of life, pushing limits, setting boundaries and… testing out what kind of super human I was … well, that was al before the vax…
Q: Share your experience with any medical care and any diagnoses you have received:
I’ve been heart broken over my experience as a patient . I come from a critical unit where our brains thrive off the adrenaline of complicated cases. I am more like a bother to these outpatient doctors I have met. Complicating their 3 minute visits w their usual patients… I know it’s complicated, and understand if there are no answers… but to completely ignore the fact that I was frequently losing consciousness, bedridden for months… and losing my memory, have fingers that look like they’ll be falling off soon… is just not ok.. I’ve been dismissed by tele docs, primary docs, urgent cate visits, neurologists, immunologists. And SADLY some of my own doctors whom I work with… AND KNOW what kind of person I was Pre Vax illnesses. Some refuse to believe that an adverse reaction could stem from this … They’ve officially diagnosed SLE (systemic lupus erythematosus) chilblains lupus, perniosis. Raynaud’s phenomena. Antiphospholipid syndrome. PSVT and POTS. Small fiber neuropathy. And newly LONG COVID SYNDROME. Whatever it is, I’ll do anything to get my mojo back.
Q: Was your reaction reported, and what was the response?
Vaers, Vsafe, CDC , Pfizer… have begged doctors who know doctors.. for someone to study me, collect labs, data, present at grand rounds… All I get are crickets…
Q: Is there anything that has helped, and have your symptoms improved?
Lots of rest. Lots of NSAIDs. Low histamine diet. Vit. Supplements. My docs, not at all.
Q: Have you had Covid before? What was your experience if so?
I was Covid positive in December of 2021. It was all very similar reaction to what I had when vaccinated! I was quite impressed with how similar, but the PAIN. 8days of this unexplainable low back/ pelvic / low extremity pain … completely inconsolable . High fevers for 5days straight then less for another 5. BRADYCARDIA!!! From tachy 120s daily to 40s. I stopped my beta blocker but with EACH DROP in rate, my stomach turned. Nausea and vomiting… symptomatic Brady. But that was short lived. Once covid was over 2wks of symptoms… my heart creeped back up to tachy again and I’m back on the beta blocker. No other changes… my hands are still blue
Q: What do you wish others knew?
I’m pro science, pro vaccine. I wish others would find their common sense that apparently has all been lost during this pandemic. In history, vaccines have adverse reactions… WHY NOW do you treat the vax injured like they are a horrible group for this community.. world!! What have doctors been threatened with that they cannot sit in a chair , look me in the eyes… and listen to my story. Why can they not see my whole life turned upside down on dec 16, 2020. I lost my career… I LOST MY IDENTITY. And not one doctor has acknowledged this… or cares to try and study/research any of it.
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