First Dose of Moderna on 03/31/21 Lot #018B21A
Michigan
46 yrs old
Q: What was your life like before you got the vaccine?
I was one of those people that would get a well check every 1 to 3 years. I took zero medications. At the time, I exercised around 5 times a week and walked our dog every day. I was the one in the family always pushing to go for a hike and get outside. A mother of two teenagers and married to a wonderful husband who’s in the hospitality industry. Because of that, we move often. I have always tried to make the most of everything, tons of mini road trips with the kids and I loved to travel and visit friends. We were happy and looking forward to the world getting past Covid.
Q: Would you like to share your reasons for getting vaccinated?
With our world completely turned upside down from Covid hitting the hospitality industry and the kids being home from school, I wanted to do whatever I could to keep us safe and move forward. We had been in CA when it hit and with things shutting down, ended up moving to Michigan to be closer to family and have work while we waited things out. We were told the vaccines were safe and this was what was needed. Looking back it all happened so fast. It was the idea that we could change things for the better and get our lives back that motivated me. It was also said the only danger was if you had a risk of anaphylactic shock and that would happen right after. I didn’t feel I was a risk for that so I thought I would be safe. I have had all other vaccines and never had a problem.
Q: What was your reaction, symptoms, & timeline?
I received my first and only Moderna vaccine in Dearborn, MI on Wednesday, 3/31/21. While waiting the 15 minutes after something felt a little off, but I chalked it up to nerves. Afterwards, I was driving back to Berkley, MI, and while driving, I felt like a wave went through my body and I suddenly couldn’t catch my breath. It was only a few seconds but it scared the hell of of me. I was able to drive the rest of the way home without it happening again. Once home we had dinner a little later and it happened again, I started choking on my food and trying to breathe but it passed quickly. I didn’t know what to do, I kept hoping it was just a quick strange thing and I’d be fine the next day.
That night, I ended up with a fever and my arm was sore and on fire, all things I’ve heard were normal. I remember feeling really thirsty and I felt so tired but my body couldn’t rest. I realized my heart was racing. I don’t know why but I felt like I needed to stay sitting up.
I ended up with the fever only lasting a couple days but the redness on my arm was getting worse and the waves kept hitting. I started to only want to try eating when I wasn't alone because I never knew when I’d start choking.
That following Monday I happened to have a dentist appointment. For some reason they take your BP there. I was told it was high and I should get checked. My entire life I’ve had low BP, so hearing this only added to the fear and question of, what was happening to me?
Because we had recently moved, I didn’t have a doctor yet, but had a PCP appointment set for the coming Friday, 4/9/21. I couldn’t wait to get some help. In the days leading up, things got worse and worse. Eating became too stressful, not only choking, but my insides were starting to randomly squeeze really hard. I would feel it in my stomach area and all the way up in my sinuses and head. When it would happen, I wasn’t able to get air in. I remember pounding the floor with my fist through the pain, just trying to make it stop and to get my breathing going again. (This happened often in front of my kids, it was terrible). My heart was constantly racing, there was never any calm, my body wouldn’t let me rest, breathing was starting to get more and more difficult. I also had to focus more on my breathing to the point of counting to try and get a normal rate. Like I couldn’t just breathe without thinking like I used to. I had to always be sitting up and couldn’t turn on my sides anymore or my arms would go numb and it would get even harder to breathe.
When I saw my new doctor that Friday, she told me I had a bacterial infection at the vaccine site so she wanted me to take antibiotics and then she gave me Xanax to take up to 3 times a day. She said to take it when those waves of squeezing hit and when I was having trouble breathing. I really didn’t know what to think, I had never taken anything for anxiety before and I didn’t know what was going on. I asked her if others were having any kind of reactions like this from the vaccine and she said she’d never heard of anything like this. She told me to get the antibiotics going as soon as possible and go take a Benadryl right away. So I went home and did what she said. I took one Benadryl and then waited an hour for my prescription. When I drove over to Royal Oak, MI to pick everything up, on the way home, suddenly everything started going numb. I felt like I was going to pass out. I called my husband so he’d know where I was if I passed out on the road. I ended up going straight to ER that was nearby.
This was the start of what turned into 3 months of a total nightmare. I ended up on Xanax 3 times a day, which calmed me but didn’t stop any of what was happening. I ended up seeing a GI specialist who told me I had acid reflux and put me on Prilosec twice a day and said I just needed to relax, take the Xanax and come back in 2 months. I had 5 ER visits, 3 where I stayed a couple nights, but over and over again I was told anxiety and acid reflux. My symptoms got worse and worse. I had bloodwork, x-rays, and CT scans but nothing showed up.
I ended up losing 20 pounds. I eventually had to go on a full liquid diet and then slowly was able to start solid food again. I felt like nothing that used to work on its own did now. My breathing, heart rate, oxygen levels, BP, temperature, and digestive system were a complete mess. I would get constant adrenaline dumps so my body couldn’t calm itself. The nights would be me sitting in a chair sometimes finally dozing a few minutes only to be woken up by either heart racing or numb arms, light headedness, and trying to get my breathing going. My body temperature also dropped, at one point, 2 full degrees below normal. At the worst of it, it felt like a choice between eating or breathing. The less calories the easier to breath, the more, it was a fight for every breath. For a time I couldn’t even say a sentence without being out of breath.
After 3 months of getting nowhere, and although there were some kind professionals that I’ll never forget, I was disgusted by how I was treated by many. I know what it’s like to be so sick and looked at like you’re crazy. I remember crying to my GI doctor about how much weight I was losing and how I was afraid because I kept choking. His answer was "just try chewing your food better". I was told by a pulmonologist at the hospital, when I’m telling them my lungs are so tight what can I do, they said to try singing, that should really help. I was told by the cardiologist at the hospital that my oxygen dropped during the stress test I couldn’t complete and that it was probably just a false read and it was from cold hands. I was told by one doctor who ordered yet another CT scan, when I said I don’t think those are showing anything so why do you need it? He said it’s not for us, it’s for you so you can see nothing is wrong, Every nurse that had me walk with them at the hospital would constantly have me stop and go slower and slower until my oxygen wouldn’t drop. Afterward they get me slow enough for it to look fine, they’d send me home.
After that I spent July and August on my own hoping it would eventually go away. We moved down to GA at that time for my husband’s work.
I continued to have trouble breathing, numbness, digestive issues, and I noticed a vibrating feeling in the lower back of my head that came and went with the intensity. I started to constantly have numbness in my left arm so I decided to try the doctors again.
What followed was months of numbness getting worse. It would happen more at night. I would wake from dozing off with trouble opening my right eye and my left arm and leg feeling numb. A few times I felt like I had to fight to get my eye to open and one time I completely couldn’t move my left leg for about a minute. I was also so tired from not being able to ever get a full nights sleep, my body would start to calm and it would constantly be jolted awake, over and over. I felt so tortured.
I ended up in the fall/winter playing the waiting game of seeing more “specialists” and more tests, and spending tens of thousands trying to see if anything could improve my quality of life and give me an answer.
Not one doctor I saw had heard or believed that the vaccine had anything to do with this. I was told anxiety over and over. Every “specialist” told me I needed to go see a different one. They’d get a test in, collect and send me to the next one. I was frustrated with the cardiologist because I said we need to figure out what is blocking my circulation. Why do I get so much pain on the left side of my neck when it happens? What about a Doppler ultrasound? He said, you don’t need that yet, I have a vascular guy that can help, I’ll call you, but you really need the pulmonologist. Round and round I went and finally gave up on all of them. I’ve yet to hear back about the vascular guy. The pulmonologist had his assistant call to tell me to go get a second opinion. Months wasted. They know my heart is fast, they know I can’t exert myself without my oxygen and BP dropping, but I have no help.
Q: What is your life like now, after getting the vaccine?
With this week hitting the year mark it’s very emotional for me to think about this.
The first 3 months I felt like I was going to die every single day, multiple times a day. Through fall I had better days but then it would come back. There’s always that fear having the knowledge that no one has been able to help me, no one knows what’s wrong. I don’t know if I’m truly getting better, if this will ever go away, or if it’s killing me. I’m looking towards the positive and a full recovery but there is still so much unknown.
The worst part is feeling so claustrophobic in my own body. I can’t walk a normal pace with my family. I can’t do any type of exertion without my oxygen and BP dropping. That is the hardest part. I also have the numbness that comes and goes. I have to eat a really strict diet or it gets worse and I have that vibrating feeling in the back of my head.
The good news is, I feel like the heart racing when I try to sleep is finally lightening up. I also am starting to feel a little more like myself, like I’m not stuck under a constant dark cloud anymore. I have highs and lows weekly. I do feel like it’s very slow, but I seem to make some progress every couple of months.
Right now, after a year of this being my whole life, I’m trying really hard to focus on other things when I can, but it’s hard when you are constantly reminded of your limitations. Mini golf is my go to and very slow walks in nature, it’s a start. Watching funny movies with the family helps too. I went from mid 40s to feeling like I’m 90. I am so thankful, though, to have made it this far and I’ll keep trying to feel positive.
Q: Share your experience with any medical care and any diagnoses you have received:
The past year I’ve had 5 ER visits, I’ve seen dozens of doctors. Overall I hear it’s anxiety and it’s all in your head. I’ve had countless bloodwork, x-rays, CT scans, EKGS, MRI of my head, ultrasound of my abdomen, manometry test, breathing test, echocardiogram, stress tests, to name a few. My most recent test, a CPET. Afterwards I was told I had autonomic dysfunction. They saw once I tried to exert myself and I had trouble, my BP quickly dropped.
I’ve been told I have a fast heart rate, my BP and oxygen drop, they think, due to autonomic dysfunction. I have acid reflux, a hiatal hernia, and a small motility issue in my esophagus. I’ve found anxiety to be the convenient diagnosis. I was literally lectured by a rheumatologist just last month that it’s ridiculous to think this could be from the vaccine, he got one and he is fine. If I see a really good psychiatrist, I’ll feel good as new. He said there is so much misinformation out there on the vaccines and none of it is true.
How can people not understand they only know what they know? It’s overall been a very disappointing and frustrating experience. I’m okay with the not knowing, this is all new, but the gaslighting and disrespect given to someone who is fighting to get better is just wrong.
This coming week I have an appointment with an infectious disease doctor who is trying to help people with adverse reactions. I learned about him through our vet, as she has a client whose son had similar symptoms and they are working with him. This will be the first doctor I’ll see who is working with this. I’m keeping an open mind and am hopeful. I’m also seeing a cardiologist who specializes in autonomic dysfunction this July. It’s an 8 month wait to see him, but my neurologist recommended him with all I have going on.
Q: Was your reaction reported, and what was the response?
VAERS and Moderna. I’ve contacted afterwards too. Basically they’ll call me if they need anything. Modena had nothing on where to go for help if you have an adverse reaction. If most people are fine, maybe they could spend a small portion of some of their billions in profit on helping the small number people who are hurting from their vaccine. Just a thought.
Q: Is there anything that has helped, and have your symptoms improved?
TIME and DIET
I haven’t been able to have any coffee or alcohol since this happened. If I keep out gluten, dairy and sugar I do a lot better. I’ve tried GERD, Candida and low histamine diets. If I stick to that I do a lot better. If I give in and try anything off, like chocolate or pizza, the symptoms start to get worse.
A doctor once told me instead of day by day, take it week by week with feeling better. I’ve found I have to take it by every couple of months. That’s when I can look back and see a little bit of a difference.
I do still have to take Omeprazole (Prilosec) twice a day. I just tried to go down to once a day but my esophagus starts contracting when I don’t take it, it’s like the old symptoms come back so I keep taking it for now.
In the thick of it I was given several inhalers, anxiety medications and some other digestive medications. Carafate, which is supposed to coat your stomach, caused my insides to just squeeze from my throat down, just a strange awful reaction. I got off all the anxiety meds by end of June, they just made it worse. The last thing I want is to add side effects to what I’m already going through, and I would rather not be on any medication if possible. I was off a daily inhaler by August.
Q: Have you had Covid before? What was your experience if so?
Not that I know of. I was tested for antibodies when this all started and they came up negative. After this happened, I’ve had to continually be tested due to doctors appointments and testing. All negative.
Q: What do you wish others knew?
I think overall these have been hard times and I don’t know what the right answers are.
I do know my brother has had Covid 3 times, no vaccine and he’s doing a lot better then I am. That’s just us though so it’s different for everyone.
I also know that if you get Covid or have long Covid there is help. If you have an adverse reaction to these vaccines you are completely on your own, medically and financially. There is zero help and the worst part is you will not be believed by most people. This is real, people have suffered and have felt so alone.
If the CDC, FDA and NIH would acknowledge this is real so that doctors all over understand it’s happening at least there would be some level of understanding and openness about helping us. They know this is happening, they know it can affect our neurological systems, so please take our information and help us! This is not misinformation or anti anything. We got the vaccines so please be scientists and help us!
To anyone else out there going through this: you are not alone. I’m so thankful to have recently found this site. I have read every single story and although the symptoms and severity may differ, we were all going through this and we were all alone. I’m looking forward to joining the support groups and I’m thankful for all of you who put this together so we can have a louder voice. My heart goes out to every single one of you and your families. I hope for full recoveries for us all and that the people at the top who have the power to change this will do the right thing. We can’t accept being collateral damage and we cannot just stay in the dark, quietly suffering. It’s wrong what has happened to us. We all did out part to help, and when we were hurt, they did nothing. This has to change.
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