Overcoming Fear: The COVID-19 Vaccine

27 01 2021

Some of you know my family and some don’t.  To summarize, my son developed a brain injury from vaccines as an infant.  He carries a diagnosis of encephalopathy (among many others) which was given to him by his mainstream Texas Children’s Hospital pediatrician.  He has a medical waiver for all future vaccines.  I want to make it VERY CLEAR: I am NOT an anti-vaccine person.


I have multiple complex medical diagnoses, but if you read my blog from the spring, you know that I have lupus.  I have a history of exaggerated responses to vaccines; the last one I got was a tetanus injection at least two decades ago.  It was a very bad reaction and I was not going to put myself through that ever again.  My husband is extremely healthy. 

Like the rest of the world, I have been waiting to see what the COVID-19 vaccines would be, what would they look like, how would trial volunteers tolerate them, and what EXACTLY (and I mean EXACTLY) was in them.  My go/no-go on the vaccine was going to be based on all those things.  I am hoping that my experience will help you make the decision for yourself.

Now older, my son lives in a group home setting with two other young men who, without compromising their primary diagnoses, have things that would put them at high-risk.  The group home agency has taken many precautions to not let COVID-19 reach their homes.  I don’t know exactly their success rate, but I do know it has not reached my son’s house.  We are careful ourselves because of my own diagnoses.  My husband has been working from home since March.  We have no family who lives here in our area except for my son.  We have not visited with friends.  I have a job that allows me to work outside for the most part and that is not even very often.  We go through the drive-through at the pharmacy to pick up things unless we absolutely have to go into a store.  We wear masks.  We do curbside pick up for our groceries.  We socially distance unless there is some odd circumstance where we can’t (rare).  If I am in a store and someone walks in without a mask on, I leave (and I don’t care if I’ve been there 15 minutes already and am almost finished).  You get the picture.  We are exceedingly careful, but COVID-19 seems to be closing in and affecting more and more people we know (but haven’t seen). 

I read the ingredient list of the Moderna vaccine. After looking thoroughly at all the “additional ingredients” in the vaccine, I felt comfortable for my son to get it. 

About 4 weeks ago, we were told that the group home agency, since it was considered by the state as being similar to what a nursing home would be, was going to be vaccinating anyone who wanted to be.  It was the Pfizer vaccine.  I had been a bit perturbed with Pfizer because they were refusing to release an ingredient list for them which made me suspicious of them immediately.  Moderna had full, open disclosure so that gave it one notch in the “trust” column.  Then I found a breakdown of it on the MIT website.  In the December 9, 2020 article, it broke it all down.  It contained mRNA; lipids (which is the same vehicle used by Moderna); salts (potassium chloride, monobasic potassium phosphate, sodium chloride and basic sodium phosphate dihydrate); and the only “other” ingredient was sucrose. 

We decided to sign him up.  We would bring him home with us that weekend so we could CLOSELY observe him. 

Two days prior to him receiving it, we got an unexpected surprise.  We would also be allowed to get the vaccine.  It became a matter of dosing with the vials so that none of it was wasted.  We filled out all the appropriate paperwork.  I contacted my rheumatologist to weigh the pros and cons for myself; he said succinctly: 

Whatever your reaction is, it would be less life-threatening than if you got COVID infection. “

The Day of Injection

I was having a mini-panic attack about doing this.  We met our son at the site.  The pharmacist spent a LOT of time with us, especially with Patrick’s and my medical histories.  You could tell the pharmacist was nervous about all this, too, but isn’t that what they were expecting?  They were vaccinating people with disabilities.  The pharmacists were rattled by one person in the room who clearly had Tourette’s.  I heard a comment under the pharmacist’s breath about him needing to be quiet.  The young man’s vocalizations made him jump where he was sitting. I tried to explain to him that it was part of the young man’s disability; it wasn’t anything he was doing deliberately and he just can’t “be quiet.”  I tried to be nice about it; after all, he WAS about to put a needle in MY arm.    We had numbed Patrick’s upper arm so he wouldn’t feel it going in.  I numbed mine, too (I’ve developed a needle phobia over the years after all the poking and prodding).  He asked for Patrick to wait with us for about 20 minutes more–which would be 40 minutes in total as the pharmacist had spent 20 minutes with me just getting my history and understand my complex medical issues).  He wanted me to wait about 20-25 minutes, too.  The pharmacist told us to rub the injection site for about 30 seconds twice a day for a few days. 

Patrick didn’t even move.  Jeff is a pro at getting vaccines so it was no problem for him.  I did feel it go in a little (but it wasn’t as painful as a needle for blood work).  The vaccine itself was mildly burning; I imagine that might be the “salts” in it. We were all fine and Patrick hopped back in the van to go back to his group home; we planned to get him later that evening and keep him through the weekend to monitor him. 

I happen to have “princess and the pea” syndrome.  What is that, you say?  It’s not an official medical syndrome but it is the fairy-tail story of a princess who was able to feel a pea that was on bottom under 100 mattresses.  I’m the person who would feel the pea.  It’s important info for some of these observations I am about to share:

Before we left the parking lot (so about 40 minutes after the injection) I told my husband I could feel something different going on inside.  I also felt, for lack of a better word, like a space cadet.  Then a few minutes later I told him my mouth got super dry (maybe lasted maybe 20 minutes).  We had to stop to pick something up before going home.  When we got back to the car, I said, “I know what this weird feeling is—I’m exhausted.”  My husband agreed he was starting to feel that, too.  About two hours later the tiredness got worse (like “I need a nap” level).  I noticed my spine in the cervical area up into my head was throbbing (this is also where my pseudotumor cerebri headache emanates from so I don’t know if the vaccine had some effect on that; this particular disease is only 1 in every 200,000 people and common in people with lupus).  We both took naps.  My husband noticed for him that his eyes got oddly dry (versus me with my mouth getting dry) in a different way than he usually experienced.

Subsequent Days

The next day (Saturday) my husband had no symptoms at all—not even a sore arm.  My son didn’t appear to be hurting or to be tired in any way; he is nonverbal and doesn’t understand if I ask him “where does it hurt.” He cannot even answer that question with pointing to where it might hurt. I was still exhausted enough to need to stay in bed most of the day and slept.  About two-thirds of my upper arm was hurting (both moving and not moving it).  My headache had now changed to involving my entire head, slightly throbbing.  Later that night, though, I felt like I was going to pass out.  My blood pressure was crazy low.  I took it both sitting and standing.  Sitting it was 104/71 with a pulse of 62 and when I stood up it was 69/42 with a pulse of 69.  I took it twice to be sure about 15 minutes apart.   Not sure what to make of that.

On Sunday, my arm was better.  I was still having some weird blood pressures and I still had that bad headache but I was less exhausted.  I did stay in bed again most of the day but didn’t sleep as much.

On Monday, I was less tired and as the week continues to progress (it now being Wednesday) that has improved a great deal to where I’m back to normal.  However, this headache remains.  I’m hoping this will improve soon, too.  

I hear the second dose is supposed to be the one where you might get a fever and some other kind of symptoms.  I will report back. 

This was, by far, the best vaccine I’ve ever received.  I’ll let you all know how the second dose goes.

February 12, 2021 Second Dose Update:

My husband wound up having the usual reaction to the second injection. He was tired and on day two he had chills and fever. My previously vaccine-injured son still had no reaction that we could determine. Surprisingly, my reaction was better than the first injection. When I shared with the CVS Health professional what my reaction to the first one was, she said, “Well maybe this second injection will not be like that.” And she was right. I had a much better experience. I was only tired for 2 days, in bed for one full day from the exhaustion, but up and about on day 2, but just taking it easy. I did have a headache that lingered a day or so more, but I’ll take it.


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2 responses

28 01 2021
Kim

I’m glad your family was able to get the vaccine. I’m sorry you went through all of this. But wow, this is the best? Hugs. I think you should definitely report what you experienced to the CDC. Take care.

Liked by 1 person

31 01 2021
PBMom

You should have seen the reactions I’ve had to other vaccines. Things are definitely not on the list of potential reactions. So yes, this was the best vaccine I’ve ever had. My husband, who just had fatigue and a sore arm for a day or so definitely agreed. And well my son doesn’t have any additional brain damage so that makes me extremely relieved. I agonized over this decision for him. Do we risk it or not? We decided to risk it. He was the least affected between all of us.

Thanks for reading it and commenting.

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