Sparrow / Liz: I think the thing that makes me angry, perpetually Is that yes, long COVID and ME and all these other chronic illnesses are devastating and we don't know how to treat them But adequate housing and support for things like bathing and ordering groceries can 100% help

so in 2020 I went from "too disabled to work, but can have hobbies" to "a series of inflammatory reactions, now stuck in bed in the dark and quiet trying not to trigger a new flare, unable to use words for most of the day" AFAIK it wasn't COVID, just my dang immune system again

I'm doing a lot better currently (although still not as good as before this all began, which again, was also still disabled) I technically can leave the house but my fragrance/environmental allergies are so bad that going out is Very Difficult

I think we've mostly figured out some of what caused the ridiculous exacerbation of symptoms Which honestly feels somewhat miraculous

I didn't have much energy for diagnostic testing when I first got my Epic Flare And honestly I was pretty sure it was some permutation of my existing chronic illnesses So I didn't even attempt to see a new specialist for like...8-10 months? I just got my biologic every month and rested

[severe food intolerances, malnutrition, unintentional weight loss] I also spent a lot of time trying to find foods that I could actually digest My MCAS means I can have an immune reaction to basically anything I got to a point where I was reacting to almost everything I ate It was dire

[severe food intolerances, malnutrition, unintentional weight loss] It actually became a lot easier to figure out foods I could tolerate Once I was getting enough nutrients that I wasn't dealing with such severe brain fog I couldn't really read ingredients labels for awhile there

[severe food intolerances, malnutrition, unintentional weight loss] Another thing that was so hard with brain fog and food intolerances Was figuring out *how* to actually get foods I could eat I was too sick to go to a grocery store So delivery was my main option

[severe food intolerances, malnutrition, unintentional weight loss] Brain fog made things like "creating a new account" Or "searching for items on a website" Or "remembering my password" Incredibly difficult So many times, I didn't order things I needed because I couldn't figure out how

[severe food intolerances] Anyway, I finally managed to see a gastroenterologist I knew they would want to do things like a colonoscopy, and I was honestly too sick to do that outpatient Even when I was doing better, I had a "can't eat most foods" flare for a month afterwards

[severe food intolerances] I was not expecting them to find anything on the colonoscopy But I had some small ulcers at the very end of my small intestine By the time I actually saw a doctor, they were starting to heal

[severe food intolerances] But it's looking like maybe I developed bonus Crohn's? (Or possibly something like Psoriatic Arthritis?) Or maybe just sparkling gut inflammation My doctor is like "even if it is Crohn's, we wouldn't treat it at this point due to the side effects of immunosuppressants"

[severe food intolerances] Funnily enough... There was this point where I finally started to improve After I decided that since there isn't a ton of research on what to do about digestive symptoms of MCAS That I would just try some of the strategies used for IBD

[severe food intolerances] I just got an iron infusion after six months of trying to see a hematologist And that seems to have really helped my fatigue and exercise tolerance I think I'm actually able to build muscle again, finally

The digestive issues weren't my only lingering symptoms after the 2020 flare I also had a couple years of idiopathic intracranial hypertension (IIH) Which is where there's too much pressure in your skull due to excess cerebrospinal fluid liminalnest.wordpress.com/2023/03/19/i...

Idiopathic intracranial hypertension (part 1): symptoms, contributing factors, similar conditions and diagnostic testingliminalnest.wordpress.com Stock image from WordPress Free Photo Library. Image shows a Black, masculine person clutching their head in pain. If you follow me on Twitter, you're probably aware that I was diagnosed with Idiopath...

My IIH started after a couple months of severe insomnia due to my immune disorder I could only fall asleep at like 5 am, and my sleep wasn't restful Eventually IIH made my sleep really difficult too, because being horizontal makes it worse

IIH can also cause blurred vision (because of swelling of the optic nerve) So that also made it really hard to research doctors or treatment options Or even just...refill my meds at the pharmacy

I'm still not sure exactly what helped my IIH go into remission But having enough nutrients certainly helped

The other "oh fun, a new chronic illness" complication from 2020 Was that I developed idiopathic Erythromelalgia Also known as "man on fire syndrome" rarediseases.org/rare-disease...

Erythromelalgia - Symptoms, Causes, Treatment | NORDrarediseases.org Learn about Erythromelalgia, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD to find resources and

In my case, I seem to go through these periods where I'm not getting enough blood flow to my hands and feet And then my body overcompensates by sending way too much blood to my hands and feet Making them red and painfully hot And also causing nerve pain

Again, I'm not sure exactly what helped my Erythromelalgia I still have it, but I no longer have to have my feet elevated for 22 hours a day So that's progress I can also get hot clothes out of the dryer without immediate pain for hours

One of the things that did help Is I figured out my Erythromelalgia tends to flare in the early afternoon, as well as the evening So I started making sure I was resting with my feet up before the redness set in

One of the things that's really weird about having been so sick for so long And now being slightly less sick Is that when I describe some of this to friends who've never experienced it They're appalled, shocked, and concerned

Meanwhile, I feel like I've won a freaking golden ticket or something Because statistically, I was much more likely to stay that sick (or more so) for the rest of my life And there was so much luck and privilege involved in the improvements to my symptoms

I think the thing that makes me angry, perpetually Is that yes, long COVID and ME and all these other chronic illnesses are devastating and we don't know how to treat them But adequate housing and support for things like bathing and ordering groceries can 100% help

And there's no real safety net providing those things I was lucky because I was already on disability benefits when I got so sick, and I was already living with family who were willing to help with caregiving I wasn't also dealing with housing insecurity (like so many folks)

I think many people find it comforting to believe that I somehow willpowered myself better Or I just tried and tried until I found the treatments that helped me But so much of it is things like "not also having to worry about having a roof over my head"

[severe food intolerances] It's really easy to get into a kind of negative feedback loop with complex chronic illness Can't sleep, symptoms get worse Symptoms make it hard to sleep * Can't eat solids, brain fog and fatigue get worse Can't prepare food because of brain fog and fatigue Etc

[malnutrition] Anyway, tl;dr My Epic Flare seems to have mostly been caused by: MCAS got worse Crohn's ? (Or some kind of gut inflammation) Associated malnutrition from severe digestive issues Poor sleep quality contributing to be inflammation

I suspect all of the above fed into the problems I've been having with circulation (both the headaches, and the red hands and feet) liminalnest.wordpress.com/2024/04/04/c...

Cerebral Autoregulation Problems: when the brain isn’t getting the right amount of blood flowliminalnest.wordpress.com How does your body determine how much blood flow to send to your brain?What neurological and other systems help deliver blood to your brain? And what happens when this system is not working quite righ...

[malnutrition] I was having a lot of trouble walking or standing or climbing stairs And I think that was mostly because: I wasn't getting enough nutrients/blood flow to my muscles Chronic tendon inflammation on overdrive Tight hip flexors from sitting with my legs elevated all the time

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