So, here’s the deal. COVID-19 (the coronavirus) is going around, and people are either freaked out, or making fun of the people who are freaked out. Now, I realize that this is supposed to be a book blog, for reviews and yammering about my writing and whatever else, but I want to take some time to talk about COVID-19 from the perspective of someone who has immune system issues.
First, I have a chronic illness called Ehlers-Danlos Syndrome. While my version of it does not compromise my immune system, I am always either recovering from an injury and/or surgery, or I am injured and/or waiting for surgery. This means my body is always dealing with some kind of stress, and yes, stress can impact your immune system. Furthermore, I have had cancer three times, and I have fought it three times, but it really, really impacted how I get and handle illnesses.
Here’s an example of how things typically go for me.
Back in November of 2018, I got a cold. I treated it the way colds are usually treated. I used Dayquil and Nyquil and waited for it to move on. However, it never did. While everyone else in my house got it, and recovered within a few days, it was a month later for me and my sinuses felt like they were going to explode and my cold was no better. I went to the doctor and was diagnosed with a sinus infection and given some pills to suppress my coughing (I still had that cold) and antibiotics for the sinus infection. No big deal.
I went home, and I did what the doctor told me to do. I religiously took my medication. I rested. A few weeks later, I was no better so I went back to the doctor, was given even stronger medication, and told to do the same thing.
In January, I started getting bloody noses. Not like, your normal bloody noses. Mine were so bad I’d bleed through entire shower towels. I’d stand in the shower for almost an hour with blood just running down the drain. The shower looked like a murder scene. So I went back to the doctor, and was given a nasal spray and he cauterized my nose, and he gave me some pills and said I still have a sinus infection, and still had a cold, and he thought the cold led to the sinus infection because it had already taxed my immune system and it just gave the bacteria in my sinuses room to play.
I made an appointment with my private doctor at this point (I was using Instacare until now). So a week later I went to him. He couldn’t see anything up my nose because it was so full of blood. He tested my blood to see my iron count and I was severely anemic. He put me on iron pills, and gave me MORE prescriptions to take to combat any infection, and more pills to help deal with the discomfort of the cold, and said I needed a blood transfusion. Then he said my case needed a specialist, so he sent me to an ENT.
Off to the ENT I went. He did a CT scan and confirmed that likely my cold had turned into a sinus infection (or rather, it laid the foundation for a sinus infection to grow) that was antibiotic-resistant and was eating through my sinus passages. So he booked me in for surgery. Now, the cold that started in November was turning into surgery in April. He ended up grafting some tissue around to fix some of my sinus passages, cleaning out my sinuses, and fixing a deviated septum which, he said, was making it so I didn’t get enough airflow into my nose and making my nose a perfect place for bacteria to procreate.
So he does this thing, and we all think that I’m done. That was it. I’m finally cured from the cold I got in November. Yeah, it took until April, but hey, it’s over. Right? Wrong.
In May, I went for my yearly checkup with my cancer doctor. He booked me in for an ultrasound and we found lumps in my neck. Four, I believe. Now, for a little background, since about January of 2019, I’d been feeling… off. Not just due to all this illness due to my cold/sinus infection, but off other ways too. I had night sweats. I felt sick all the time. I was super lethargic. When I drank water, I tasted metal. The list goes on. So cancer doctor books me in for an ultrasound and we find lumps. I’ve had cancer three times already, so I basically knew what this meant. He sent me to my surgeon who removed my original tumor years before, and I go there to talk to him.
In May, my doctor informed me that I was showing all the symptoms of lymphoma. Even the lumps looked right. With my history, it was pretty much a given. We talked about surgery and chemo. We talked about what happened next. We prepared me for cancer. My parents were planning on renting a place nearby so they could help me through chemo. I mean, everyone KNEW I had lymphoma.
So the doctor books me for surgery, and removes the lumps. We wait on pins and needles for the biopsy results and when they came, he called me into his office and said we had to talk.
TURNS OUT the cold, which turned into a sinus infection, which already required one surgery to repair the damage from it, ended up warping some of the lymph nodes in my neck in such a way that they tricked my body into thinking it had lymphoma. Basically, I had all the cancer without actually having the cancer. We determined this because the doctor and his team had only seen this happen a few times before, and it was usually caused by some serious infection in the teeth or the sinuses that was either untreated, or SEVERE and nearly untreatable. We had to track my medical history down, and we kind of investigated all of it back to the source, this damn cold I got in November of 2018.
The fun part of that is, once my lymph nodes start doing this, they don’t typically stop, so now for the rest of my life every time I start feeling like I have lymphoma, I have to get an ultrasound, see if there are lumps, and get them surgically removed. Then I will be A-Okay.
So by July of 2019, I’d had two surgeries, a blood transfusion, been on (if I remember right) six rounds of antibiotics, and was planning to undergo chemotherapy. And it all started with a cold. Not even an exciting cold. Just your average, run-of-the-mill winter cold.
And if you’re all, “But it’s over now!” Well, let me inform you that I am going back to my ENT next week because I’m still having bleeding problems and I’m still having issues with my sinuses, specifically on the left side of my face. I’m also on a lifetime dose of this special medicated ointment I have to put up my nose twice a day, and in June of this year, I have to get more ultrasounds done to make sure my neck isn’t throwing a party again.
So please understand, that while most people may have minor symptoms, those of us who see “minor symptoms” and “most everyone will be fine” are not comforted. All of this started with a cold for me. One cold. I didn’t even feel sick enough to stop going to work (I don’t work around people so there was no real chance of me spreading it around). It was absolutely nothing out of the normal for winter in my area, and here it is, March of 2020 and I’m still going to the doctor in a week to deal with some of the fallout from HAVING A COLD.
I’m not saying you should panic about COVID-19. I am saying that for those of us with immune issues, we are likely looking at this virus in a completely different way than a bulk of the people out there. I will never, ever, ever just shrug off a cold again. Because my cold is something I’m still dealing with. Your cold might be uncomfortable. Mine made everyone on my medical team think I had lymphoma and needed chemo.
Protect yourself. Please protect yourself, but remember that not everyone can laugh this threat off. I have, and am, canceling travel plans and convention plans due to this. It’s just not worth the risk, and that’s OKAY. I am going back to work next week (I took some time off due to extensive hip surgery), and I have spoken with my husband about a plan of action if we start seeing community spread in my area–I will either go on a leave of absence or I will quit and make editing my full time, 100% job.
These threats are real, and they are scary. If you are not a person who has ever had to think, “Well, I wonder if this cold will land me in the hospital with two surgeries, six rounds of antibiotics, and a blood transfusion” then you are lucky, but if you are one of those people, please don’t feel ashamed of being worried, or preparing. I understand. I don’t look at illnesses as just an illness anymore, and I haven’t in years. I don’t bounce back. It knocks me out and drags me down every time and it’s terrifying.
And that’s really the entire point of this post. Maybe, if you can see what has happened to me, then maybe you can understand how “minor symptoms” and “but just about everyone will be fine” are not comforting. And those of us who look at this thing like it’s a very real threat, aren’t being dramatic. It’s a REAL THREAT and it’s SCARY. You can’t see it coming, all you can do is prepare, be careful, and hope for the best. But please, when you mention that there is a 2% death rate like that’s a small number, so “no big deal” understand that there are those of us out here who see that 2%, and are not eased by it at all.
So, COVID-19 sucks, and it’s scary, and if you don’t feel like you need to be overly alarmed by it then I am genuinely happy for you. I wish I didn’t. But don’t forget those of us who do see it as a very real, looming threat. Maybe, if you are one of the people who aren’t concerned by it, take the time to check up on your immunocompromised and disabled friends, neighbors, and family members and see if you can help them at all.
Ultimately, it doesn’t cost you anything to be kind.
There are a lot of scared people out here. Instead of har har-ing about all the people stocking up, and all the people “overreacting”, maybe just reach out, check in on others, and see what you can do to make it a bit easier on them.
Stay safe x