#navigating chronic illness

[compassionmattersmost]

The Six Types of Courage in the Journey with Chronic Fatigue Syndrome

For those of us living with post-viral chronic fatigue syndrome (ME/CFS), the path we walk is not a simple one. Each day brings its own set of challenges, often invisible to the outside world but deeply felt within. Yet, amid the fatigue, the uncertainty, and the pain, there are moments where we are called to draw on reserves of strength we didn’t even know we had. Courage, in its many forms,…

[a-totally-reasonable-username]

If i want to have the same independence healthy people have, specifically the ability to leave the house and go places by myself it would cost over 50000€

[a-sassy-bench]

me: i need disability assistance navigating through the airport

airport: we don't do that, you have to call the airline

*calls airline*

airline: we don't do that, you have to call the airport

.

[jmtorres]

Hi, this is random, but would you mind sharing more about your gut issues/long covid? (I.e. diagnosis, treatment). I have chronic fatigue, and gut issues that are definitely linked to that, but all of my doctors are being extremely useless about it. (No worries if this is not the kind of info you want to share with a total stranger on the internet)

(This is in reference to my comment on this post)

@reptilerex I appreciate you recognizing the sensitivity of this ask, I am going to go ahead and answer it because I feel like the likelihood that you or someone you know (or even others of my readers) are struggling with long covid and finding adequate medical help vastly outweighs the minuscule probability that you've hacked into HIPAA records and are planning to dox me lol

so in the immediate aftermath of my first bout of covid (despite vaxxing and masking regularly, I'm up to two now 😭) my obvious symptoms were fatigue – going to the grocery store would wear me out for 2+ days – and a 20 year-old scar from a car accident reopened, which sounds like some scurvy ass bullshit, and I do wonder if the fact that my friend @niqaeli, who knew that long covid symptoms are highly correlated with MCAS symptoms and was encouraging me to start MCAS otc treatments like vitamin C supplements, helped. (worth noting that while I didn't hear anything about old scars reopening as a covid/post covid thing before it happened to me, but when I told people about it, they were like "oh yeah, that happened to me or someone I know" SO often) My doctor sent me to a wound specialist for that, and they kept poking it trying to figure out if there was some embedded shrapnel that they hadn't realized was in there originally, but ultimately it just healed back over much redder and angrier than the first time.

so then, the fatigue. My doctor had me wait three months because it wasn't officially long covid until three months. obnoxious as hell. I found out the DMV accepts long covid for a disability placard reason and got my doctor to write me a DMV form about how I couldn't walk hardly any distance. she was willing to do that before the three month mark.

I was Johnny on the spot coming back three months after, the first thing she did was send me for a chest x-ray because the obvious/expected reason for fatigue is you're not getting enough O2 in your blood. There was nothing wrong with my lungs and we were kind of at a dead end until I presented my doctor with more options.

I mean, I was kind of like, my PCP is being useless, I have a PPO, why can't I just go directly to a specialist, but it turns out specialist won't take you without a referral because reasons. I had heard rheumatologist is as good at figuring out weird vague shit so I tried to book there but when I told them long covid, they said that wasn't their department. They said I needed to go see an immunologist which sounded wrong to me, but there was a pretty good HIV specialist immunologist in the area that I tried to book with who said no that's not what long covid is. someone recommended a Long Covid Specialty clinic in a city that is 2 to 5 hours away depending on traffic and I knew I wasn't making that drive in my current condition so was like somebody local gotta help me.

so I went back to my PCP and said to her that I had learned from disability communities online that sometimes a rheumatologist can be helpful. And she said OK we can do some blood tests for inflammation markers to see if I can justify a referral to a rheumatologist. (and I thought of my weird scar issue and thought gee I better have some weird inflammation markers)

So I had some inflammation markers pop and I got a referral to a rheumatologist, and they were actually willing to see me. The rheumatologist ordered so many tests, like an unbelievable number of tests. I think they drew like eight vials of blood. Plus other samples. The rheumatologist was basically like let's look for anything and everything.

I had a borderline response on Calprotectin. To quote from the explainer in the test notes:

Calprotectin in Crohn's disease and ulcerative colitis can be five to several thousand times above the reference population (50 mcg/g or less). Levels are usually 50 mcg/g or less in healthy patients and with irritable bowel syndrome.

so I wasn't high enough to qualify for IBD outright from that test results, but I was high enough that it flagged to the rheumatologist, and I had reported a family history (brother has IBD), so he said that was enough to diagnose and started prescribing me for that.

The thing is, rheumatology is an ass backwards way to get an IBD diagnosis and I was having another symptom that I hadn't reported because I was a dumbass and this is the apocryphal frog boiling slowly thing. I was having fairly regular loose stool/diarrhea. if I had told my PCP that could I have gotten a referral to a gastroenterologist and gotten a less ass backwards diagnosis?

I hadn't told my PCP about loose stools for two reasons:

I didn't think it was relevant to the fatigue, and in fact, I still didn't think it was relevant when the rheumatologist called it, and I was really surprised when taking medication for IBD did actually turn out to help the fatigue

I knew I was lactose intolerant, so I thought it was already explained. However, the rheumatologist and I had this exchange:

Him: so do you still drink regular milk or just Lactaid?

Me: Lactaid

Him: then you shouldn't still be having diarrhea

Me:…

I can't remember the first med he started me on because I was only on it for a couple of weeks before we had to switch. (it helped a lot when I could tolerate it but about every three days I had to throw up and then I felt awful and didn't take the med for a couple of days and you can guess how that went.) the one that I went on long-term that actually worked without side effects for me was mesalamine/lialda. I also started experimenting with some dietary changes, the low FODMAP diet is intended for IBS not IBD, but you are still expected to have IBD triggers so I was playing around with that.

for a few weeks, I had incredible improving energy. It was crazy.

then I made what I can only now think of as a mistake in trying to be proactive about my care. because I had stumbled ass backwards into an IBD diagnosis and I felt like I should have gastroenterologist confirm it, and I went to go see my brother's gastroenterologist. he wanted to do a colonoscopy and he asked me to go off the mesalamine for six weeks so that he could see what my colon was like without treatment and it was the worst fucking six weeks of my life. Hated it. colonoscopy results: he didn't see anything fucking wrong and would not diagnose IBD or prescribe mesalamine based on what he found. I said, but the mesalamine improves my symptoms, what does that mean? He said, it means keep seeing your rheumatologist.

I went back to the rheumatologist and told him about the whole debacle with the gastroenterologist and he was like "so how did he explain your inflammation readings?" like CHECKMATE. And he concluded that any lesions I had must be in the small intestine, not the large intestine and so were not seen by colonoscopy.

I kept taking mesalamine. My improvement was slower after the break from it which sucks but I did get back to normal lab work within six months, hallelujah.

Follow up: MORE stuff that might have been avoided if I had gastroenterologist regularly, had gotten an IBD diagnosis from a gastroenterologist, or had mentioned my shitty symptoms in the immediate: the gallbladder bullshit this summer

I had my second round of covid in May and I didn't notice a lot of fatigue coming out of it, though I was more cautious with myself the second time around, but I was sort of holding my breath for what horrible nonsense is going to come out of this now? so then I had what I thought was a really bad case of Gerd that didn't go away for two weeks even though my Gerd usually resolves in like a day. I went to my PCP twice during this period and then ultimately ended up at the ER when I realized my pain was in my side not central anymore and I was worried about appendicitis. It wasn't appendicitis. It was my gallbladder. and it came out that night. overall, I am very happy with how the hospital handled the emergency for instance, I didn't realize until two weeks later that I seriously could've died because they were so calm about it the whole time but like they don't do same-day surgery unless death is on the line, let's be real.

but here's things that could have been helped if I had better gastroenterology care:

I didn't find this out until I was researching gallstones after the fact, and I would like to think a gastroenterologist would have warned me whereas the rheumatologist wasn't super aware of it but: IBD can lead to gallstones because one of the ways a cholesterol gallstone forms is, if you get an imbalance of bile and cholesterol in your gallbladder; your body wants to recycle bile by reabsorbing it at the end of your small intestine, but if you have IBD, sometimes it loses the bile instead of reabsorbing it, and then you get an overabundance of cholesterol, turning into a gallstone the size of a golf ball

I told my PCP it was a case of Gerd that wouldn't go away, but I didn't tell her I was also having diarrhea. Diarrhea is not a Gerd symptom. Maybe if I had just fucking told her she might've recognized or could've sent me to somebody who would have recognized it as a gallbladder symptom before it turned into an immediate emergency

tl;dr don't hide your gut symptoms from your doctor because you "think" you know what's wrong with your guts or that it's not related to your other problems or you're embarrassed or what the fuck ever just tell them that you're shitting yourself because it might turn out to be important

[opalsiren]

deeply #unrelatable post incoming but it is very odd that whenever i meet a new person and they inevitably ask what i do for work, i have to tell them that i can't work due to illness/disability and basically divulge one of the greatest hardships i've ever experienced. i know people mean well and don't realise what they're asking, but it has the same impact on me as if i were asked to explain my childhood trauma in great detail, bereavements i've experienced or the reoccurring themes in my nightmares. it is difficult to talk about the debiliating illness that's kept me from work, study, and nearly every aspect of 'normal' life with people i'm close to, let alone with someone i've just met. i wish this wasn't a rote question we ask upon meeting someone new, if we got rid of this social norm i wouldn't have to re-open the wound nearly every time i make small talk with a stranger. it's so painful when a normal conversation turns deeply personal in an instant, and i just don't know how to navigate it anymore, if ever i did

[plumberrypudding]

how do i walk the line between “i don’t want to be too expecting of myself, i should know that my disability Will make some things harder and i need to be able to forgive myself when i can’t do things” and “i don’t want to write off every struggle or problem as being because of my disability and therefore probably something i just can’t do, i want to be able to do hard things without pushing myself too far” because um. uagh

[helpithinkitsstartingtorain]

I hate having to go to my primary doctor with a huge list of new or worsening symptoms because I’m so scared of another dr telling me I’m making up symptoms for attention

[butchjackabbot]

i wanna say that the pitt having a disabled doctor and a doctor with a nontraditional path into medicine is so meaningful beyond what i can put into words

[nix-writes-mcyt]

heyoooo! Please forgive my spam likes D: I'm rereading all of your works and I get distracted and just like things. You're such a great author btw!!

I don't mind! Please forgive my extended break from writing, life is just a non stop rollercoaster for me it seems right now (your early 20s sure is a ride). I do hope to get back to it though!

And thank you for one, reading my works still, and two liking them. I really appreciate both :)

[inkshine]

AAAAAAAAAAGH it's so difficult being the family member of someone with an undiagnosed chronic health problem because I WANT to support them SO BADLY but because the American healthcare system sucks ass and we can't even get a proper diagnoses we're all fumbling around in the dark. And I'm not even the person with the issue, so I can't even imagine the amount of pain, anger and confusion my actual relative is in right now.

[harmonyhealinghub]

Navigating the Uncharted Territory: My Journey with Chronic Illness and Uncertainty Shaina Tranquilino January 18, 2024 At the age of 18, my life took an unexpected turn, plunging me into a world of constant illness and uncertainty. The symptoms I endure are overwhelming - from debilitating nausea and stomach cramps to the frustrating inability to keep food down. Endless trips to the bathroom, sleepless nights plagued by insomnia, sudden hot flashes, sweating, and excruciating pain in sensitive areas have become my everyday reality. To make matters worse, my body seems to be betraying me with the absence of a menstrual cycle, persistent fatigue, weakness throughout, and inexplicable pain all over. Hair loss, mouth sores, rashes, and high blood pressure further compound my struggles. Seeking answers has been a long and arduous journey that has taken me through countless doctor's offices and hospitals. Specialists have subjected me to numerous tests - from blood work and urine samples to stool examinations, heart assessments, MRI scans, CT scans, ultrasounds, EKGs, endoscopies, colonoscopies - you name it. Yet frustratingly enough, every test comes back normal or inconclusive. It feels like an endless uphill battle where hope for a clear diagnosis seems elusive. The medical professionals suspect that I may be grappling with one or multiple autoimmune diseases or perhaps something incredibly rare. Sadly though, these conditions rarely present themselves on tests until they reach life-threatening levels – a disheartening fact that makes obtaining a definitive answer even more challenging. This uncertain future has pushed me to seize each day as if it were a precious gift because there is no telling how much longer I will be able to stand strong. In light of this unpredictability looming over my existence, I strive to serve others as best I can while I still have the strength. Every task completed becomes an accomplishment knowing that time is fleeting. Each day brings with it gratitude for being alive despite the unknown that lies ahead.

Today, I am humbly asking for your help. I am 30 years old, so it has been 12 years of dealing with this mysterious illness, and it is soon going to be 13 years for me. If you or someone you know has experienced similar symptoms, if you have any knowledge or expertise in rare diseases or autoimmune disorders, or if you simply have suggestions on where to turn next, I would be eternally grateful for your guidance. Perhaps there is a specialist, a research study, or an alternative therapy that could shed light on my situation.

I firmly believe that together we can find answers and solutions. By opening up this plea to the public, I hope to tap into the collective knowledge and compassion of our community. Your support, advice, and connections may hold the key to unravelling this medical mystery and restoring hope to my life.

Thank you from the bottom of my heart for taking the time to read my story. Please feel free to reach out with any insights or recommendations you may have. Together, let us strive towards uncovering the truth and finding a path towards healing.

With deep gratitude, Shaina

[morimyth]

If I can't talk to a human, I'm not going.

[healingherhope]

I hate being scared of my own body but I am

I am terrified of what is happening to me

I’m terrified of what this means

Having your perception distorted because your vision is blurry and you’re lightheaded when you’ve done *nothing* wrong is so fucking scary

I literally think I’m lightheaded because I’m having a heavy period and I’m losing blood

Or is this just psychosomatic? Is my body creating pain and symptoms because I want to believe something is wrong? And then I spiral further? Who the fuck knows! I’m so scared

And I’m so young

This shouldn’t be happening to me

But it is and it’s so scary

Nothing is wrong with me! Except my pre-existing conditions getting worse. Every day I’m reminded that I’m unhealthy and I’m slowly killing myself from the inside out while my coping mechanisms only make it worse

And every day I get more stressed about it. When will I learn? Probably never.

My vision is blurry and I can’t tell if it’s from high blood sugar because of too much coffee creamer or from strain on my body. I’m so tired

And so scared

[post-human-oddity]

does anyone familiar with this system understand how the overlap between SSI disability checks and section 8 housing vouchers would work? my SSI doesn’t provide me with enough to functionally live off of, but if i get a side gig or sell art even that proves im capable of working and i’ll lose my disability… my “low income” housing is still above 1k a month, which feels insane to me. but im afraid to apply for a housing voucher in case it fucks with my SSI and i end up getting like $13 a month instead because i have “no cost of living”

my disabilities directly impact my ability to think clearly and research this effectively… funny how all resources for disabled people deliberately built to be inaccessible for the exact people they are pretending to try and help

[psilactis]

feeling some sort of way about being a late diagnosis autistic adult

[uhbasicallyjustmilex]

to anyone who’s left me a comment on ao3 recently thank you so much, you’re amazing and you don’t know how happy it’s made me 💗 i promise i will get to any overdue replies this weekend, life has been a lot lately and i’m a bit behind on fandom stuff rn but please know how insanely much i appreciate all you wonderful humans who engage with the fics i share. you truly don’t know how much it means to me 💜