Call me Itis

Because something is always inflamed.

There is no God or Goddess named Itis that I know of. There is Iris, which aside from being an excellent GooGoo Dolls song, is a freaking awesome name. It seems in mythology she was a mail carrier for the Gods. There is also the Egyptian Goddess Isis, who I read has healing powers.

But on bad days. I can’t heal myself. In a crash, I can’t seem to resurrect myself from my bed.

Here is a list of some of the types of inflammation that have plagued me over the years. Bursitis, dermatitis, arthritis, tendinitis, costochronditis, sinusitis, keratitis, uveitis. That’s probably not all of them. I don’t know yet what’s causing the neuropathy in my hands and feet, but it wouldn’t surprise me at all if it was another type of inflammation.

Inflammation may also be part of why my eyes are so dry. They call that one sicca. It may not always make me feel sicca, but it can be difficult to manage. I also have a lovely ganglion cyst on my non-dominant hand and a cyst in an ankle. They think those are a result of inflammation, too.

The only place they can’t seem to find inflammation is where my former ophthalmologist suspected it: in my blood. He said “lupus” on three separate visits. Whatever this is looks like lupus, but isn’t lupus.

If I ever start performing again, I will name my band Looks Like Lupus.

After my cardiac stress test came out normal, I asked the cardiologist why I’m like this. He told me that post-viral inflammation can last for years. Shingles had me in bed, staring at the wall, nearly nonfunctional for at least a week. Then swelling started in my feet, along with episodes of extreme fatigue.

Even when I returned to work probably too soon after the shingles, I was falling asleep at my desk. If I didn’t show up, I didn’t get paid. I was unaware there could be long term consequences.

Uveitis that was apparently the only symptom of a virus set in summer of last year. Once it resolved, I started getting really dizzy with generalized headaches much of the time. I’ve had conversations with long-haul Covid patients, who have symptoms quite similar to mine. I now suspect the uveitis may have an otherwise asymptomatic Covid-19 infection.

The lady who came to evaluate me from low vision vocational rehabilitation said she thought I might have chronic fatigue syndrome. I read what I could about it online, and I checked a lot of the boxes as far as symptoms go. If I don’t meet the criteria for an autoimmune diagnosis, I feel I definitely meet the criteria for ME/CFS.

I’ve been trying to get into podcasting since, as evidenced by my lack of consistent posting here, I can’t always see well to read and write on a computer. My phone, with the brightness all the way turned down, is usually alright to look at. On the bad days, it does make me quite dizzy. But it’s the smallest screen I own.

The iPad I have less luck with. Fewer apps even offer dark mode and the screen is a bit too close and too big. Anthing with videos or large pictures is a no-no. TV screens are ok, if the brightness is adjusted to reflect the day’s level of light sensitivity. So I can watch TV and movies, but I’m having a heck of a time writing reviews of them.

The only thing that helps is really pacing or limiting myself. I’m used to knocking out tasks or blog entries all at once. Now I have to do them for small amounts of time. It can be very frustrating to completely adjust your way of doing things. But anything is preferable to crashing so hard you get that thought in your head—“Oh, so this is how it ends?”

I’ve also given up alcohol except for on special occasions. I’m trying to eliminate as much gluten and preservative-laden food as I can from my diet.

I have seen some improvement since I started implementing lifestyle changes for POTS (post orthostatic tachycardia syndrome). My dizziness starts not long after I’m upright. POTS is a type of dysautonomia, which can be a part of post-viral illness. I was told the closest place I can be evaluated for dysautonomia is the University of Utah. But even though four specialists have suggested I go there, I don’t have insurance coverage there.

I keep asking the dry eye specialist if it’s normal for my eyes to burn if I’m exposed to too much light. He assures me that it is. I wish he had a different answer for me. I’ll keep asking, because hope springs eternal.

So if you need me, I’ll be stuck (mostly) inside my house, fanning the flames of whatever inflammation vexes me on any given day.

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