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TJ Wolf
Life With Lupus: Vaccination Shot #2, Flare, & A Pain Patch
2021-06-13
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 Shot #2
Been a awhile since I was able to write an article. Combination of being ill and winding down one job and starting another. Back in mid-May I went for my second Moderna vaccine shot.
Picture of COVID Vaccination Parking SpotsJoshua Hoehne/Unsplash
Vanished like a fart in the wind!
My wife and I had a scheduled date and time to return for shot #2. This was for the local pop up vaccination center staffed by nurses with members of the National Guard assisting. The same location where I received shot #1. When we pulled up on the date and time, there were no cars and everything was closed up. No signage whatsoever and no trace this local Kiwanis club was ever used for vaccination. As Warden Samuel Norton says in The Shawshank Redemption, “ …up and vanished like a fart in the wind!”
Please forgive the crude yet descriptive quote above. A cursory internet search from my phone revealed the site had closed up the week before. I double checked my email and junk box, yet no indication from the state/county that the site was closing. Sigh…typical. Now the closest site was about 1 hour away. Not the end of the world, but I had meetings to attend within 2 hours.
So we opted for the local supermarket pharmacy that confirmed they could do Moderna shot #2. Was a quick and painless process, although the pharmacist seemed a bit alarmed at my medical history and anaphylaxis within the past 2 years.
All went well.
Didn’t even feel the prick of the needle.
Then, given how shot #1 went, I braced myself for a rough few days ahead.
Wow...Nothing But...
…a sore arm at the spot of injection. Nothing further the day after, and nothing more the day after that. “Nothing” equating to no worse than your average aches, pains, and fatigued Lupus day.
Man (not me...wish my arms was that thin!) receiving an injection in his arm.Steven Cornfield/Unsplash
I was pleasantly surprised and happy to be so wrong. The majority of people I spoke with that received Moderna suffered the most side effects after shot #2. Including some colleagues who stated it put them on their backs and subsequently were out of work several days.
Lupus Labs Told A Different Story?
A week later I went for my Lupus labs in advance of my quarterly appointment the first week of June. I handed the lab technician the written order, but she told me to hold onto it. “Everything” she needed was in the computer. “Okay” I thought for the moment, but when the number of vials was less than normal (usually 6–8 different blood vials) and she told me “no urine specimen” when I inquired, I internally sighed and thought “here we go again.”
Rack of lab vials.National Cancer Institute/Unsplash
So in my best attempt to be patient, polite, and humble I stated that historically there were more vials and always urine to test my kidneys for protein levels. I mentioned I’ve been doing these labs more than 5 years now.
Oh silly me. Like I, as the patient, could possibly know what should be happening with my care and labs.
The tech told me “nope, only what’s in the computer”. I still challenged the lack of a urine test. She replied that test is handled via the blood tests. Huh? Okay, I gave up. I only have so much energy (spoons) and I’m not about to waste an extra one or more spoons at 8 AM in the morning of a long day.
Guess what? Day of my Dr. appointment, my PRN says they didn’t do all your lab work. I tell the story above.
PRN says “well I’m looking at the computer right now and they are all listed.”
Large outward SIGH from me.
Then my PRN laughs when I say, “well what would a dumb old Lupus patient like me know about the labs after getting them done 4 or more times a year for greater than 5 years?”
My PRN also says, “the tech could have called the office, after all we are the same healthcare system. Or the tech could have looked at historical records…”
Yeah, but that would require believing me for a second.
Lesson learned (again by the way…but was a different lab in the past). I push back and burn a spoon or too next time for the sake of my kidneys, liver, blood clot factor, or whatever else was missed.
Fortunately the labs that were done included my inflammatory markers and Complement C. My PRN indicated that these lab results indicated I was yet again in a flare. So that now makes 7 of the last 8 quarters in flare over the past 2 years. This latest flare despite taking 10–20mg of Prednisone daily and increased Azathioprine (Imuran) of 150mg, which is the limit for my weight. Sigh indeed.
Now whether the flare isbecause of the Moderna, some unknown infection, or “Lupus…it is what it is”, who knows.
New Pain Patch
So I started the article with some “no Moderna shot #2 side effects” which was good news, then told you of "Lab Blunders R’ Us" and flaring bad news, so let’s end with some good news.
My new Primary Physician (previous moved away) referred me to a Reflexologist who looked at my history and X-Rays. He was kind enough to take over my pain management and upped my Tramadol to the maximum dosage. However, I don’t take that much Tramadol as I find it only works to take the sharp edge off for a couple hours. Some days I don’t take any at all. But that’s okay, because now I have authorization to take more if needed.
Now the real amazement came when he prescribed a 10mg Burtrans (buprenorphine) transdermal 7 day patch. I tried the patch that evening. By the next day I already noticed a difference with the pain in my knees, shoulders, tailbone, back, neck, and hands substantially reduced.
And it continues to work so far. Which of course prompted the question of “where’s this been?”
Sheet of smiley face stickers - what I think the patch should look like.Nick Fewings/Unsplash
I do notice it seems to lose its potency around days 5–7 due to some of the pain returning, but after applying a new weekly patch the pain reduces again. Only other patch problems I’ve noticed is it gets waterlogged, bubbles up, and splits when I take too many showers. It’s Southeastern US summer temperatures coupled with having the “Prednisone sweats” right now, so it’s a minimum 2 showers daily for me. So I bought some waterproof medical tape to cover the edges in an attempt to keep the water out.
A member of the BetterDays chronic diseases and illness community did warn me that she once used the patch, built up a tolerance to it, and it no longer works for her. So I’m keeping that in mind, but for right now I’ll take the reduced pain, added mobility, and added movement/exercise from simple tasks (like typing this article) that no longer cause me intense pain.
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.
I have Lupus too. My Rheumatologist, who is also a professor told me to get the vaccine as soon as possible! I've had pneumonia twice. I have a weakened immune system anyway but he said covid might kill me. I got the Moderna. My husband has Emphysema. I was scared to death I'd get it & give it to him. I had no problems the vaccine.
Kim Bixler
2021-06-14
I'm surprised you took the shot.I choose not to.Lupus attacks my eyes.I can't take something that speeds up my metabolism. Throw me in high gear.Normal people ok.Im not taking anything that messes with my immune system.I had covid I got a headache and no smell.
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