When I published my post about my experience with an active case of COVID, I had no idea that it would take an additional 6 weeks to fully recover from my infection. Or that my medical team would all agree that I was lucky with this infection. I mean, I knew that it was a pretty miserable experience. But I hadn’t expected multiple people with MDs to agree with me that, however miserable it was, I was still lucky. 

Before we rewind time to August, I want to take a second to say that I’m so grateful that things weren’t worse, but I’m also in no hurry for round 2. I’m still wearing masks and being careful, especially as we have no idea the long-term effects of having COVID. It has barely been 5 years, and I’m not risking myself any more than I already have. 

I am not a medical professional. This is what my experience has been like and any medical advice is what I’ve been told about my body; please talk to your own medical professionals. There are also affiliate links in this post. Thank you for supporting Kate the (Almost) Great® – your ad and affiliate revenue has made this already trying time significantly less stressful!

August 16, 2024

Well, I made it through another week. This week included working (less than my normal schedule but still doing it), going to the chiropractor, and having a therapy appointment. 

I don’t talk a lot about therapy other than the fact that I’ve been in therapy the majority of the last 15+ years and it can be great for lots of people, but I’m actually going to talk about it now. 

This week, we talked a fair amount about how I’m feeling with my ER trip last week, how my body is recovering from COVID, what my body is doing post-COVID, and how I feel mentally about all of that. 

This was brought to the forefront because I had an anxiety attack the other day that was triggered by events that absolutely would not trigger one normally, and it was so intense that I had to do my protocol for preventing a panic attack. 

I have dealt with medically more (and weirder) things in the last 5 years than many people experience in their lifetime. It is already so hard to manage without adding COVID and my body’s reaction to it. 

And to be clear, I don’t think I have Long-COVID (🤞), but my body doesn’t have normal reactions to things. Here are the things I’ve been dealing with:

• Different infection
• Different virus
• Ovarian cysts
• Significantly increased inflammation
• Increased RA activity
• Increased muscle pain
• Bruised ribs from coughing
• Acne 
• POTS flare
• Bleeding gums 

I need to do some serious rest, which will definitely be happening this upcoming weekend as I’m going home to Maine and will be under my mom’s supervision. Sometimes you just need your mom to go, “Sit down!” to make you do something. 

It has been really hard because I’m 6+ weeks post-infection and I’m 4+ weeks post-testing negative on home tests. I’m bored and frustrated and want to be recovered already. 

What Is Considered a Chronic Illness? And Other Chronic Illness Basics

August 21, 2024

I’ve been home in Maine since the 17th and I’m so glad to be here. 

The weekend was a lot harder on me than I hoped it would be. I spent a solid 4 hours in the car on Saturday which is normal for going from Boston to Maine but everything is hard on me right now. 

I’m just glad that we didn’t leave until early afternoon because I was able to spread out the tasks I need to do before I leave. Even when I’m at my best, a travel day can be a lot. And I’m not at my best right now.

Things I did before leaving: 

• Empty fridge
• Take out trash from bathroom, bedroom, and kitchen
• Take out recycling 
• Pack food 
• Water plants (I have plants now!) 
• Tidy up
• Change bedsheets
• Finish packing

Again, all things I normally do whenever I go to Maine. They’re just more difficult right now. 

Then, on Sunday, I didn’t rest as much as my body needed. For one things, I wanted to do a little bit of meal prep so I could eat healthy, filling lunches during the week and spend as much time as possible resting during the week. But it was still harder on me than expected as all I did was prep and cook chicken and make a salad dressing. 

My mom and I had dinner with my grandma and aunt, which was lovely. I don’t know if I would have gone if my aunt hadn’t been there because I was so tired (and my grandma lives up the road from my parents) but I’m glad I did. And then I crashed at the end of the day.

I also finally caved and increased my steroid dose. 

Honestly, this weekend was the last straw. I’m definitely on the other side of the infection, but all of my illnesses are now freaking out, and I didn’t want to spend this time with my family feeling completely awful. 

I’m on constant steroid use and have been for a while, and while it’s not ideal, it has been an essential part of my care. 

While how I felt this weekend finally made me give in, the thing that really did it was the fact that I was resisting for the sake of resisting and not because I didn’t feel the need for it. I also admitted to my mom that I hadn’t told my rheumatologist how bad I was feeling because I knew he would tell me to increase my steroids … when you’re hiding things from the most important member of your medical team because you don’t want to deal with the consequences, you’ve got to take a good long look in the mirror 🙈

Hacks for Chronic Disease Management That You Need

August 28, 2024

WOW has the steroid increase helped! I knew it would and I’m still annoyed with myself with holding out. 

This past weekend, my family went to Rockland for a little getaway. It was fun and I was able to do the most important things (dinner at Primo and some shopping) but otherwise I was out for the count, as expected. 

If I was at my best, I would have gone to the Farnsworth Art Museum with my family, spent more time outside, done more shopping, and been in less pain. I still wouldn’t have been able to do everything, but I would have been able to do more – and been in a better mood while doing it. 

Honestly, that’s been one of the hardest things: I’m on 8 weeks of the COVID experience (4 weeks into my recovery/not-infected timeline) and it’s really hard on me emotionally to have even more fatigue than usual, not to mention all the increased symptoms of my other illnesses I’ve had since I got COVID. 

I’m frustrated with how slow this recovery is going. I’m frustrated that it’s taking me so much longer than almost everyone else I know who has gotten it (but not surprised because that’s how my body works). I’m frustrated that I went through all of my sick days within 3 weeks of having them. 

I’m frustrated that what used to be a bad day is currently a normal day. 

And I’m so angry. Angry that people insist the pandemic is over. Angry that so few people wear masks. Angry that I’ve lost a lot of what I had recovered after surgery last year. Angry that I’m barely holding on to work and appointments and taking care of myself. Angry that I haven’t been able to work on the blog much other than these posts. 

There is some good news, though – my rheumatologist has given me the all-clear to restart my immunosuppressants. I probably could have started them a week or two ago, but I was anxious, especially after my ER trip. I’m still in Maine so when I go back to Boston (and have access to my immunosuppressant pills again) I’ll restart them. 

The real notable thing is that I can schedule my Rituxan infusion soon. I spent some time on the phone today with my specialty pharmacy and my new infusion center getting things set up and I should be able to schedule the infusion soon. Based on my and my family’s schedule it won’t be until the end of September at the earliest, but since I was due for it back in March, that will do.

Crucial Ways to Prep for Surgery Recovery Ahead of Time

September 3, 2024

It might not seem like a long time, but a lot has happened since the 28th. 

1. I’m back in Boston after a few weeks in Maine. It hasn’t even been 36 hours since I left and I already miss it. I’m still recovering from the car ride (plus the car ride to my rheumatologist today) and I feel bad in a way that wasn’t normal a year ago. That bone-deep fatigue is still there, even if it’s getting better.

2. My new infusion center will not have everything ironed out soon, so we’re moving me back to the hospital I was at in the first place. This is because I’m not doing well, it’s mostly caused by missing my infusion, and it’s important that I get Rituxan sooner rather than later. 

3. This was decided after my rheumatology appointment this morning. Strangely, my fibromyalgia seems to be doing okay, which is not normal for me when RA is being problematic, but I’ll take it. My rheumatologist agrees that I’m not doing well and even though we know the reason – missing Rituxan plus my body’s reaction to COVID plus how long it’s taking my body to recover from COVID – it’s frustrating. We talked about how I felt before and after I increased my steroids a few weeks ago and the hope is I’ll be able to decrease them soon. 

This was my only appointment for the week, thank goodness. I’m so glad I don’t have to deal with more this week or being in the car any longer; I spent over 7 hours in the car in the last 30ish hours. 

Next week, I’ll be back in it with all of the appointments I had to reschedule in July when I got COVID: PCP, hematology, and immunology, as well as my already-scheduled dentist appointment. 

What Is Advocacy? A Patient Advocate’s Guide

September 7, 2024

Quick little update: I’m starting to have periods of time where I feel like my pre-COVID self!!! And then I make the cardinal mistake of feeling okay with chronic illness and overdo it. 

It’s hard mentally to have these periods of feeling normal and then very shortly after to feel bad again. Those swings are really difficult and make it harder to be normal when I feel like myself.

To make this upcoming week easier on me mentally – because again I have a lot of appointments and doubt they’re all going to be good – I’m going to have baked ziti for my dinner. It has been my absolute favorite recipe for about a year so knowing I’m going to have it for dinner will (hopefully) make getting through every day easier.

September 14, 2024 

You know, it’s one thing to know logically that you’re close to recovered but not fully yet, and it’s something else to be reminded of that by your body. 

I’ve been doing pretty well, all things considered, and then I had 6 appointments in 3 days. I needed a 2-hour nap on Friday in the middle of my work day, and then this morning I needed another one. 

But in some good news, I finally have a Rituxan appointment scheduled for a few weeks from now. I also don’t know how much of this fatigue is lingering COVID recovery and how much is RA fatigue. 

Additionally, one of my appointments this week was an immunology check-up, and she confirmed what I’ve been saying: this was still the best-case scenario for me getting COVID. She was shocked that I wasn’t hospitalized other than my ER jaunt. 

120 Resources for Living a Better Life with Chronic Illness

November 2, 2024

A lot has happened since I last wrote here. 

1. I finally fully recovered from COVID. What do I mean by that? I was able to go back to work at my normal schedule and was able to do things outside of work that I normally did even without my infusion. 

2. I got my Rituxan infusion at the end of September and it kicked in. 

3. Because of #1 and #2, I was able to start decreasing my steroids! 

I was on a higher-than-normal dose before I got COVID (12 mg daily), but then I got it and had to go up to a stress dose (18 mg daily). So once I recovered from my infusion, I started decreasing my steroids. 

The first few weeks, I could decrease by 2mg a week, but now that I’m down at 16 mg daily, I have to decrease by 1 mg a week. I’m hoping to be back at 12mg daily by the time my infusion runs out (the beginning of December, unfortunately). Not only do higher doses of steroids like medrol increase your immunosuppression, but they also have other not-great side effects like causing osteoporosis. 

The lowest dose that I am consistently able to stay at is 6 mg, and the hope is that I can get there eventually. But I think it’s very likely that I’ll get to 12 mg by December and have to stay there until my next infusion kicks in, which won’t be until the end of January. Which is fine by me, as generally by the time I get to 12 mg, I have to decrease by 1 mg every two weeks instead of every week. 

(Note: this is a long-time system that my rheumatologist and I have used for years. He has been my doctor since diagnosing me in 2010 and he knows me and my body. As with all things in my posts, talk to your doctor before making changes.)

My infusion also means that I can’t get my next COVID shot (or flu shot) until after Thanksgiving. This is because I’m on Rituxan, which kills the B cells, and B cells are the part of your immune system that creates antibodies. If I don’t have any ability to create antibodies, it doesn’t make sense to, well, try to create antibodies. 

The timing of my infusion really worked out, though, because while my RA will be irritating during the holidays, it will be safer for me to see my extended family because my immune system won’t be as suppressed as it is right now. And honestly, the holidays are hard on my body regardless of where I am in my infusion cycle.

COVID Diaries of an Immunosuppressed Patient

If I get COVID again, I don’t know that I’ll do another of these. This series was an opportunity for me to show people what getting COVID with a suppressed immune system was like, as I knew it would be rough even if it the best case. And, thankfully, it was. 

But that doesn’t mean that it was okay to have an active infection for 4 weeks or for it to take an additional 6 weeks to recover. 

I dealt with COVID for 10 weeks … and it was still the best case possible for someone like me. 

Check out: 

What Immunocompromised Patients Need To Know, What No One Tells You About Autoimmune Diseases, Do I Have a Chronic Illness? What You Should Know If You’re a New Patient, Tips To Make Independently Living with a Chronic Illness Easier