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I’d like to start off by mentioning that I have lupus. If you are unaware of what lupus is, the high-level description is this: Lupus (SLE) can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs. Symptoms vary but can include severe fatigue, joint pain, rash, and fever. These can periodically get worse (flare-up) and then improve randomly. Flare-ups can often be sudden but are typically brought on by prolonged periods of physical, mental, and/or emotional stress, lack of sleep, environmental conditions like seasonal allergies and air pollutants as well as dietary issues related to food allergies or food intolerances.
Why is this information important? While everyone experiences and suffers from inflammation within their bodies to varying degrees, if you struggle with an autoimmune condition like lupus, of which there are seven – known more specifically as “the connective tissue diseases”, the level of inflammation in your body and overall inflammatory response to really anything out of the ordinary, can be extreme. I have to be very careful about avoiding things I know cause inflammatory reactions and have often been unable to seek and receive immunizations as a result. My condition 100% guided my decision making, in regard to which vaccine I would pursue.
The fact that Pfizer and Moderna are both two dose vaccines really freaked me out. Obviously, the nature of a vaccine is to challenge and increase the strength of your immune system to defend against a specific viral infection. The thought of going through that twice in two weeks’ time was unimaginable to me. So, when the news broke that J&J was bringing a single dose option to the market, I nearly cried.
I have watched many of my friends and family members get their vaccines over the past two months, both Pfizer and Moderna. Most experienced some type of mild reaction typically resulting in standard reactivity symptoms such as low-grade fever, body aches, injection site soreness, fatigue, dizziness, changes to appetite, and rash. All of which typically dissipated after a couple of days or at most one week. What people don’t realize however, is if those are the standard “normal” reactivity symptoms, as someone with lupus, I should expect my reactivity to be about 50x worse. As a result, going into my vaccine appointment I was absolutely anxious and honestly a little scared.
The experience itself was painless. I walked on into a huge expo center managed by the military in partnership with the health department wearing my favorite mask and was shepherded to an injection station where a very confident, well-informed, caring nurse sat alongside her assistant. They asked a slew of questions and took note of my condition and medications as well as the epi-pen I had brought with me just in case I had an anaphylactic response (this has happened in the past). They requested I wait thirty minutes before leaving the facility to ensure I didn’t have a delayed response. Thankfully I did not and went on my way to get back to work for the day.
As time passed, I did begin to experience reactivity symptoms. I have detailed these symptoms below.
VDay (Vaccine Day)
- Injection site pain happened immediately. I spent the 30 minutes I was asked to wait before leaving, moving my arm around like a crazy person and stretching in all different positions. By the time I left it didn’t hurt anymore.
- On my way home I began to have vertigo. I felt dizzy and spacey and just a little odd. Like I had just woken from a deep sleep or a wild dream.
- I’m one of those people that drinks a literal entire gallon of water a day. So, you can assume I went into VDay extremely well hydrated. I also enhanced my usual plain water with NUUN electrolyte tablets in preparation for any potential fever I might experience. However, after my vaccine I was incredibly thirsty. I drank two full gallons of water in 24 hours, full of electrolytes and still managed to have a headache. I am not prone to headaches, so this was definitely a vaccine related symptom.
- By bedtime I was running a fever of 99.5. Which is high for me. I run cold at 96.3-97.3 on any given day. I felt achy and extremely fatigued. I went to bed early.
- I slept hard for five full hours. This is uncommon for me. I struggle to sleep every single night. I woke around 3am and had a fever of 100.2 and was achier than when I went to bed. I went back to sleep for a couple more hours.
- I woke promptly at 6am completely wired and wide awake. I felt like electricity was coursing through my veins. I couldn’t physically lay still any longer, but my body was in terrible pain. It was truly one of the oddest sensations I’ve ever had in my life. These were not the typical aches you feel from fever or illness. I felt like I was having the worst lupus flare of my life. Stiff, sore, struggling to stand up straight without experiencing pain in my back, ribs and upper body. The pain in my arm was back and worse than the day before. It was radiating heat at the injection site and I had pains shooting from my arm across my shoulders and into my neck. Because I live in pain every single day, everyone that struggles with lupus typically does, my tolerance for pain is very high. I proceeded to slowly execute a shortened version of my morning routine, realized while my brain was wired, I should take advantage and promptly grabbed my laptop and got back into bed.
- I worked successfully from bed for 4 hours. I knocked out the tasks I 100% had to get done and left the others for another day when I would have the physical capacity.
- By noon I could barely stand up. 24 hours from the actual injection and I couldn’t extend my torso fully while standing without my back feeling as if my ribs were breaking. I had the worst, strangest headache. I ate some toast, took some Advil, and laid on the couch falling in and out of sleep until dinner.
- I finally had an appetite and ate some pizza. Watched the news while sitting upright on the couch. Feeling terrible still, headache not subsiding, I went to bed around 10 after taking more Advil and was thankful my fever finally felt like it was breaking.
- My fever broke over night after terrible night sweats. I got up around 3am and changed my shirt and got back into bed.
- I woke around 8am feeling about 30% better. My fever was gone. My back no longer hurt. I stood up and nearly fell over because of the massive pain in my head. Once I caught my breath, I was ok. I thought while I have the energy, I should let my dogs out, make tea, take a shower, blow dry my hair. Attempt to be a little more human.
- By the time I was done with my morning routine I was exhausted and strangely out of breath. I have pretty strong cardiovascular health. I’ve run most of my life and exercise to one extent or another 5 days a week, so being out of breath was a little alarming for me. I got back in bed and tried to sleep some more.
- I woke up feeling a little feverish, but nothing compared to the day before. Grabbed my laptop and made my way to the couch to have tea and get some work done while I had the clarity to do so.
- I was able to stand up straight without pain by the end of the day. Was a lot less groggy and my fever didn’t return until bedtime.
- I again went to bed early. Slept pretty well aside from fevered night sweats.
- I woke up around 5am drenched. Got up and changed my shirt once again. Got back in bed and started replying to emails to start my workday.
- I had a lot more energy this morning and got out of bed at 6am to go about my morning routine. After which, I did not feel entirely exhausted which was huge progress from the two days prior.
- While my headache was less severe it was still present. More nagging and sharp at times than consistently agonizing. So, again, progress from previous days. I sat down and got back to work.
- By noon I was struggling to focus and very tired. My headache was back in full force but still no fever which was great. I decided I’d take a nap. Something I never do.
- I woke an hour later feeling groggy but forced myself to get up and get back to work.
- By dinner time I was exhausted. I had hoped to be able to go for a walk but truly didn’t have it in me. Which upset me but realizing I need to respect what my body needs most (rest) curled up on the couch until bedtime and went off to bed early.
- Woke up with a headache but without a fever. Hooray for that.
- I had much more energy than the days prior and was able to go for my usual 5 mile walk.
- By dinner my headache was more intense. I'm the most hydrated person I know, so dehydration was absolutely not the cause.
- I went to bed early but had my usual difficulty sleeping.
Day 5 - Day 9
- Woke up to the news that the J&J vaccine was linked to blood clotting. Concerning news that made me pretty nervous about my on going headaches.
- Outside of my headache, my level of fatigue has continued to come and go in waves and otherwise, I felt normal by the end of the day, day 5 and have continued to feel normal.
- Out of an abundance of caution, I started a low dose Aspirin regimen that I plan to maintain for a few weeks, maybe a month, just to make myself feel better about potential blood clotting dangers.
Just like COVID has resulted in different symptoms for each person that’s had it, so much so that most doctors have said “no two COVID patients are the same”, the vaccine will have a similarly varied effect on each person that gets it. I certainly don’t want my experience to scare anyone into not getting vaccinated. Because of lupus my reaction was probably more severe than yours would be. I do not regret it. I would do it again.
Working in international business I talk to people all over the world every single day. The fact that we have so much vaccine here in the US and the opportunity to get vaccinated at all is truly a blessing. Many countries around the world do not have equal access to immunizations in general but especially not to COVID vaccines at this early stage. If you can get vaccinated, you absolutely should.
While I certainly trust science above all else, being vaccinated does not give me any false confidence. Meaning, I will continue to wear masks (with filters) in public. I will continue to choose my social interactions wisely, I will continue to socially distance, to focus on improved nutrition, to prioritize exercise and you should too. As I've said time and time again, life is simply too fragile not to.
Stay safe, stay stylish, stay humble.
Founder & CEO, Love Saves Apparel PBC