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TJ Wolf
Life With Lupus: Vaccination Shot #1
2021-04-19
Life With Lupus: Vaccination Shot #1
About The Author
I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.
Disclaimer
This article is not intended to be a viewpoint for or against vaccination.
The article is also not intended to be medical advice.
The article is simply my own story as someone with SLE who received a first vaccination shot.
As always, you should consult medical professionals with regard to your own health and decisions.
Vaccination Decision
So after consulting with both my Rheumatologist and Primary Physician, I made the decision last weekend to go for the COVID-19 vaccination this past week.
Photo by Daniel Schludi on Unsplash
I felt I waited a reasonable amount of time to see if people turned into zombie-like beings from the vaccine similar to the plot of the 2007 film "I Am Legend". Although there seems to be plenty of debate online as to whether that was the result of a vaccine or a disease created from curing "cancer patients with a genetically engineered measles virus". Well whatever, futuristic sci fi stuff right?
Welcome To The Future?
I have to say that when younger me envisioned going for a futuristic RNA or DNA based medical breakthrough, I pictured one of those modern, shiny, and bright laboratories or medical facilities. Facilities like you see at Skynet headquarters lab in Terminator Salvation or the WHO research lab in World War Z.
Bingo! - Photo by Steve Harvey on Unsplash
Going to the old and rather rundown Bingo Hall of the local social volunteer club was not what I expected.
More Like What I Imagined - Photo by Doğancan Özturan on Unsplash
Don't get me wrong it suffices for large groups of people in a pandemic, but with its water stained drop down ceiling tiles and circa 1990 folding tables, it's not exactly what my imagination dreamt up. And hey, perhaps some Bingo would make the 30 minute observation wait more exciting, right?
Wednesday - Day of Moderna Shot #1
So my wife and I headed over together on Wednesday morning. One of my rare trips out of the house beyond doctor appointments. Double masks for me, Epi pen in hand, and spritzing myself with sanitizer every time I thought of it. This because those who arrived for the 2nd doses no longer seemed concerned about social distancing themselves. I guess they felt confident. Immune compromised me not so much.
Within 30 minutes we were in, paper work and pre-screen done, and off to get jabbed.
I told the administering nurse about my SLE, my being 2 years removed from an ER visit for unknown caused anaphylaxis, and that I had spoken to my doctors who agreed COVID-19 would be worse for me. So after alarming her and another nurse who spun around, we were under way.
Within seconds of the jab, my left arm was numb and my shoulder joint stiff and slightly difficult to move. We waited 45 minutes as an added precaution after the shot and then headed home. My arm and shoulder remained that way for the rest of the morning and afternoon.
The afternoon went fine with no fatigure and reasonable energy level. My left leg later went a little bit numb where my thigh meets my knee. I also experienced some soreness in the left side of my chest and ribs as well as some severe pain in the lower left side of my abdomen.
Now were these things caused by the Moderna vaccine shot #1 or my "normal" life with Lupus?
I honestly don't know.
Your guess is as a good as mine.
I've also heard the numbness is a byproduct of the cold vaccine injection.
Thursday - Less Spoons
After the usual night of getting up 3 to 4 times, I awoke to the alarm Thursday morning and could feel I was short a few spoons in my chronic illness cutlery drawer. This was certainly a change to my recent drastic improvevents from 20-30mg of Prednisone daily. The Prednisone defeated some recent flaring and reduced my overall pain.
After struggling to get up and ready for work, I was functional and productive with the help of a lot of coffee...like 64 oz. of the liquid fuel spread throughout the day.
I definitely felt more tired than recent days. I also experienced some chills in the afternoon causing me to put on a sweatshirt while I worked despite warmer temperatures.
Once again, were these things caused by the Moderna vaccine shot #1 or my "normal" life with Lupus?
Still, I honestlly don't know.
And Thursdays are historically the day of the week I seem to "run out of gas" from working.
And the chills? Well I also get the Prednisone sweats too throughout the day and night.
It's really hard to tell what causes what. But also makes it dangerous to know when to seek medical attention or it's just your normal life with Lupus.
Friday - Running On Fumes
Okay, now on Friday morning I felt like I was hit by a truck. I had a rough night getting up several times with pain in my abdomen and knees. I was unmistakably more fatigued and wiped out. That coupled with joint pain made it hard to function. But I put on my best game face for the day of meetings ahead and took my metaphorical patience pills to make it through.
"Patience pills" because many a coworker is sharing their vaccination shot reactions...
"Knocked me off my feet"
"I couldn't get up off the floor"
"Called out for 2 days, felt like the flu"
"I couldn't functional at all"
...and I need to be a stronger and empathetic person for them.
It's easy for my mind to quickly snap back a response to say like "well now you know how I feel almost everyday for the rest of my predicted shorter life!"..."PS - maybe you should stop dumping your work on me and others all the time".
Instead I listen. And then I offer consoling or a wish that they feel better without mentioning my own predicament in that particular conversation.
So another 96 oz. or more day of coffee closes for me at 5pm and I'm in bed by 6pm. I snooze on and off until about 8pm. Then I hit some hard sleep with the help of Tramadol to take the edge of my knee pain. Up 3 times during the night, but I sleep in until 1230pm Saturday. I know I'm tired when my fatigure doesn't care how much caffeine I've had.
Saturday - Flare?
Despite sleeping in until 1230pm Saturday, I popped awake at 5am and 8am for a few minutes. Had my juice and peanut butter oatmeal at 8am in order to take my meds and Vitamin D. I went right back to bed feeling I could not function. Joint pain spreading everywhere too, so more Tramadol. It's starting to feel bad enough that I think it's a flare.
Got myself out of bed and showered by 130pm. Sat in my desk chair rest of day paying bills and writing. Usually I can write 3 articles in about 6 hours. Today it is just this 1...in 6 hours with many, many breaks, mistake, and 32oz of coffee...pretty pathetic.
Moderna shot #1 or coincidence?
Who knows?
Of course as it gets worse while I'm still on 30mg of Prednisone, my mind hypothesizes immune response to the mRNA vaccine. This of course coupled with how my assumedly healthy coworkers are being hit by it.
Will see how the week ahead goes and if it passes.
In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with inflammation and its other biochemical weapons and agents to kill cells and shutdown organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.
The Wolf Within Me
Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.
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