Welcome to the journal of my experience with COVID in the summer of 2024. I’ve decided to publish this so that I can explain my experience as someone on 5 immunosuppressants as well as remind people that, yes, COVID is still a problem. 

For those unfamiliar with me and my health, I have rheumatoid arthritis, fibromyalgia, Sjögren’s syndrome, endometriosis, POTS, chronic anemia, and asthma. I have also had sepsis twice, including in 2018 when a mystery infection nearly killed me. I have had a suppressed immune system since 2010, which is when I was diagnosed with rheumatoid arthritis. You can read more about my tips for living with a suppressed immune system here.

I am only sharing my experience and what my doctors told me for my specific health. If this post is published, it’s because I think it will be helpful to show other people what I deal with. 

Also, this post contains affiliate links and ads because I might as well.

July 8, 2024

For the first time (as far as I know), I have COVID. 

My heart rate skyrocketed to 170 yesterday, and I got very close to fainting, but otherwise I felt fine, if … off. Then today I woke up with sinus pressure and coughing up phlegm so I took a test and, well, you know the rest since you’re reading this. 

I’m stressed but not overly so. Probably because I have so much I need to do that I can just focus on that. 

As soon as my test came back positive, I called my PCP’s office. One virtual appointment and two other phone calls later, I’m scheduled to get Remdesivir infusions on Thursday, Friday, and Saturday. I can’t take Paxlovid because of other medications I’m on, so that’s the plan. 

I emailed my rheumatologist, and he told me that I need to stop taking sulfasalazine, Plaquenil, Xiidra, and leflunomide until I test negative. I also emailed my immunologist to see if I need IVIG, which is standard operating procedure for getting sick in any way. 

Then I called and rescheduled all of my in-person appointments for this week and next week. The reason I’m proactively rescheduling next week’s appointments is because: 

1. This will not be a quick jaunt and I doubt I’ll be testing negative next week. 
2. One of my appointments is my hematology check-up, which is in the cancer center. I’m not bringing COVID around other heavily immunosuppressed people. 

Now that those calls are made and emails sent, I need to rest. There will be no pushing it because I do not need this to last any longer than necessary, and I don’t need to add another chronic illness to the list. I already knew this, but all of my providers have said it, too. 

To make this process easier, I’ve ordered more tests so I don’t run out, as well as more Dayquil, Nyquil, and cough drops. I’m also keeping track of my temperature in a note on my phone. 

July 9, 2024

I am definitely sick. 

My fever isn’t getting worse but my coughing is. It’s harder on my body and there’s more phlegm. 

I’m erring on the side of caution so I’m not working today. I know the only thing you can do to avoid Long COVID (and even then you can’t really avoid it unless you avoid getting COVID altogether) is to rest and not push yourself, so that’s what I’m doing. 

My symptoms right now are: 

• Low fever (below 99 right now)
• Headache
• Congestion 
• Sinus pressure
• Coughing with yellow phlegm 
• Fatigue 
• Body aches
• Sore throat
• Acne – I am breaking out like I haven’t in years

If my symptoms end up being anything like my reaction to the vaccines, I’ll also get ovarian cysts rupturing, although probably not until next week. (Every COVID vaccine I’ve gotten, I’ve had a cyst rupture 1 week to the day after the vaccine.)

I’m just trying to rest and eat protein, fruits, and vegetables. What’s not helping is that it’s 90 degrees but feels like over 100 (32 feels like 37 for Celsius people). 

July 10, 2024

Not working again today; just trying to make it to my Remdesivir infusion tomorrow. 

I took a 4-hour nap today. I’m not coughing as much, which is good. My temperature is a bit higher but still low. 

I’d say that this is the sickest I’ve been in a long time, which is true regarding cold-and-flu type illnesses, but it’s not true (yet) when you consider my internal infections and the sepsis. 

July 12, 2024 

I started my Remdesivir infusions yesterday. I might be feeling it? It’s hard to tell because I’m still so tired, but I think it would have been worse if I hadn’t had the infusion. 

This fatigue is similar to when I had sepsis. It’s more than when I have Rituxan infusions. It’s extreme. 

My nurse yesterday clearly didn’t consider COVID worth protecting against; he didn’t wear a mask, he kept talking about how it was like a cold, and he was just generally dismissive of it all. I don’t know how you get to year 4 and millions dead and think it’s not even worth wearing a mask against when you are caring for a positive patient. Like, do what you want in your personal life (please wear a mask), but when you are in a room with someone who you know tested positive, you should be caring more.

Today was a different story, thankfully. Had a great nurse who cared about COVID and did her best to help me. Amazing nurses – you rock.

July 14, 2024

I had my last infusion yesterday. That nurse was also better at COVID than the first, thankfully. 

I’m glad that I have a few days where I don’t have to go anywhere. This fatigue is so bad. I’ve long thought that ME/CFS sounds like the worst chronic illness to have and if the fatigue is anything like this – which I’ve heard it is – then I believe it. 

July 30, 2024

Well, it has been a while since I wrote. 

Around the day I last wrote, I started improving slowly but surely. My last infusion was on a Saturday and by Tuesday, I was able to work for a couple of hours. I managed 2-3 hours a day through the end of the week, although I wasn’t able to do much more than work. 

I still needed to order food for dinner. I was able to do a bit of social media scheduling, but that was the only blog thing I could do. 

On the 22nd, I had an appointment with my PCP’s office. The NP I saw listened to my lungs and heard about my symptoms, and she said I was on the right track. Just to be positive, she ordered a chest x-ray, which confirmed that I was pneumonia-free. 

I also got a foot x-ray, which showed that I had broken my foot in 3 places several months ago. This obviously isn’t connected to COVID, but it’s frustrating that the timing aligned like this. (Although it is also objectively very funny.)

By the middle of last week (so the 23-25th), I started feeling like I was mentally fully recovered from the fatigue and such, but not physically. That’s still true: I want to do blog things (which is why I’m finally updating this) but I don’t have the physical energy to do more than bits and pieces. 

Get my headphones here! They work super well and are significantly cheaper than other wireless ones. Unfortunately the Millinocket Eclipse festival t-shirt is not as easily accessed unless you or your sister went to it in April.

It was hard this weekend to force myself to rest. I had things that I wanted to do, but I also know that pushing myself too soon will make things worse and contribute to the possibility of Long-COVID. 

That being said, I’m dealing with other COVID-related issues. My gums have been bleeding – although I’m very sensitive to that due to RA and Sjögren’s – and my skin has been breaking out. 

I’ve also had a couple of small ovarian cysts rupture this week. I fully expected this, as every time I’ve gotten a COVID vaccine, one week later a cyst would rupture. I finally tested negative 8 days ago, so it makes sense that they would follow the pattern. 

I can’t guarantee that they’re ovarian cysts – I’m not going to the doctor for them when I’m so familiar with them – but I’ve had so many that I am 99% positive that that’s what it is. My body reacts a very specific way when a cyst ruptures, and it has been that way since 2016. Not to mention, the tell-tale sign of a cyst rupture (in my eyes) is when you can point to exactly where on the body the pain originates from and it’s a small location with the pain emanating outward from it. 

This probably goes without saying, but I’m super glad that I work from home and my company is so understanding. It has made a world of difference.

Get my masks here! I love the colors and the fit. Hospital gown by Massachusetts General Hospital.

August 9, 2024

Good Lord. 

I spent Monday and Tuesday at the MGH ER. It turns out that I still have COVID – my viral load is so low that I’m testing negative on at-home tests but I’m testing positive on hospital-grade tests. 

I also have an additional virus and an additional infection. The ER gave me IV antibiotics, antibodies (another Remdesivir dose), and fluids, all of which helped. None of these things are bad enough on their own that they’d require an ER trip, but together they did. I had a fever that maxed out at 102.8 so I’m just lucky they didn’t admit me.

Obviously this means that my body is freaking out. 

My CRP (c-reactive protein) was 47.5 when it shouldn’t be above 8. My ESR (erythrocyte sedimentation rate) was 33 when it shouldn’t be above 11.

What does this mean? Why are these things so high? 

CRP and ESR are two of the blood tests that inflammatory autoimmune patients get on the regular. I have a Note in my phone tracking my CRP over the years, and it was at 11.3 when I accidentally ate one of my allergens last year, but normally mine ranges from 1.2 to 6.5. As for ESR, over the last 4 years, it has hung out at 3-5, except for this week, when it was 33.

So what’s the deal? 

For one thing, both of these are indicators of inflammation, which is an immune response. They evaluate inflammation in the entire body – not just joints or systemic etc. The Mayo Clinic says, “The level of CRP increases when there’s inflammation in the body” (x). Mount Sinai says that the ESR blood test “is a test that indirectly measures the level of certain proteins in the blood” (x). 

Again, inflammation itself is an immune response. But that’s my body’s whole problem: it mistakenly attacks healthy things when it shouldn’t, and the attacks are way out of proportion. So what has happened is that I’m dealing with 2 viruses and 1 infection – yes, they believe I have COVID and another virus – and so my body has responded to those things and then overcorrected, as it is wont to do. 

All of this is to say that I’m back to serious resting. I got stern warnings from various people about not pushing it. Which I haven’t been, for the record. I’m just at the point in my COVID recovery where I’m ridiculously bored but still need to take it easy. 

Once again, though, I’m glad that I hadn’t restarted my immunosuppressants and I’m glad my Rituxan is delayed. 

Because this? Everything in this post? Is still the better case scenario for me getting COVID. 

August 11, 2024 note: this might turn into a series, if only because I need to talk about this and I’m better at doing it when I have an audience. I mean, I probably will do it just to give my brain something to do. In the meantime, thank you for spending any time on KTAG and buying through my affiliate links. This might not seem like much, but it is an amazing way to support me.

Want to check out more diaries? 4+ years ago I tried the CHOP POTS protocol and kept a record of my experience. You can check those out here.