First Dose of J&J on 03/21 Lot #1805025
South Carolina
Q: What was your life like before you got the vaccine?
I had a very uneventful medical chart! I was active, healthy, energetic and worked out (mostly Pilates) up to 3-4 times a week. I work in Pediatrics as a therapist for the Special Needs population. So my daily work activity level was high! I actually took the vaccine for my job as it was praised to be safe, effective and would protect my clients!
Q: What was your reaction, symptoms, & timeline?
The first week post I felt flu like symptoms attempted to work but extreme fatigue, feverish just weird and not myself. By the second week, I began to notice very sore joints, connective muscle soreness and pain. I did resume exercise so I felt this correlated with just taking a week off. By week number three, I scheduled an appointment with PCP, I knew my health decline was directly related to the vaccine. I reported extreme joint pain and soreness, connective muscle issues, fatigue, burning feelings in body parts, weird tingles/bubbles popping (parenthesis) in legs, body twitches especially in legs, muscle cramps. I can not sleep past 3 am. I would have to get out of bed and walk around to allow joints to pop and crack. I would be up 8-10 times a night just to try and relieve the joint pressure and pain. As time has progressed over the last 9.5 months my symptoms have not declined and other health issues have integrated into the mix. I have slight tinnitus in right ear, visible muscle atrophy in leg and now distal leg weakness and pain, blurred vision, weird skin mottling and coloration, gastritis, increased blood pressure, at times increased heart rate. My right side is affected greater than left, with weird increased muscle tone, tennis elbow, swelling and swollen lymph nodes. My vaccine was in the left arm as I did not want to have a sore dominant arm which is now quiet ironic!! I have been diagnosed in early May with Reactive Arthritis.
Q: What was your life like after getting the vaccine?
My life has changed very much since post the vaccine!! I went from happy, healthy, energetic, and an active person to living a nightmare of erratic, unpredictable health storms, symptoms flares, hourly and daily changes in my body!! I have not sleep a full night in over 285 days!! My body aches and hurts everyday and most of the time all day!! I am a therapist so many of the symptoms I know demonstrate or mimic MS, ALS, Lyme's disease, Rheumatoid Arthritis to name a few. For weeks, I laid in bed silently scared I was dying, losing my mind or would be disabled!! I had zero ability to research Covid 19 reactions or resources , poor health care support and no other references! Remember, the job I took the vaccine for to protect my precious vulnerable small clients. I had to recently reduce my work load and schedule as I can not physically perform my job! I am no longer able to exercise, get massage, participate in a healthy active lifestyle. My mental health has suffered greatly. I find myself anger, declining social interaction events based solely on the divisiveness of vaccine status or not being believed.
Q: Share your experience with any medical care and any diagnoses you have received:
Like most all in the #TeamHumanity's group I have been failed by my medical team and healthcare! My PCP has been willing to help me in a very passive type approach. Initially verbally appearing to agree that my reactions were directly correlated with the vaccine. Over time that has been described and documented in a very "safe", not specific approach! Technically watering down the response to phrases such as "if this was vaccine related' or "if vaccine related, my belief is possible a underlying medical condition is at play". But again, I had an uneventful health chart!! And I have never outside of blood work had any testing completed to prove that narrative! I have to request any and all specialist referral. I have waited 6+ months for these referrals!! Lectured on how it was still better than if I had Covid. I was positive Covid in July so then the bar is raised to having another variant. My Rheumatologist diagnosed me in May with Reactive Arthritis. He has gas-lighted me, used very unethical, unprofessional language regarding my vaccine reactions. Dismissing me at every visit that it is totally not related! I have had 2 doctors reject me as a patient. I have waited over 6 months out to be seen by specialist! To date, not one doctor has reported my symptoms/reactions to any Government reporting agency. No doctor has to my knowledge researched, attempted to validate or correlate to the vaccine. And has never reviewed J&J's reactions list, where I have over 4+ reactions listed on the most update list.
Q: Was your reaction reported, and what was the response?
VAERS - self reported as my doctors refused! And J&J reporting system again self reported. I have had zero response with only case numbers.
Q: Is there anything that has helped, and have your symptoms improved?
I now understand my health storms and flares so I can control some what. I have found very little to nothing has truly helped me. I can semi control some symptoms thru meds and supplements.
Q: What do you wish others knew?
I literally nightly look back over these last 9+ months and question what insights I am to learn from this experience. My positive(s) is that my husband is amazing and has supported since day #1. I also have a small group of family, friend and work support. This group (Real Not Rare) saved me from losing my mind because it supported and validated my symptoms, experiences and provides comfort even around the most sensitives aspects of this storm, my mental health! My negatives list is so long, complicated, sometimes unexplainable to others. It also plagues me especially at night!! It is disturbing, disgusting and so wrong what our Government, the media, Health Care, Healthcare professionals, friends, family members, work places and Social media have done to us!!! We are not antivax, politically driven or the enemy!! We are apart of the Covid story and to deny our existences is detrimental to the existence of mankind!! When you continue to deny me and us this group!! You prevent us from getting the most basic health care recognition and support we need to get better!!
