#as with ibd

[anxious-and-in-pain]

it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions

[genderqueerdykes]

i just think it's bullshit that alternative meats, milks, eggs, breads, and other foods are prohibitively expensive. like i don't know how to tell people that not everyone who eats vegan or vegetarian is choosing to eat that way because of their moral beliefs- a lot of people are eating these foods because they have food allergies or intolerances, or have other gastrointestinal issues

i don't have a choice. it's downright cruel to make these different options more expensive. there is no one size fits all diet- every single person needs a unique diet and some folks literally have no choice but to utilize these substitutes. some vegetarians cant digest soy. some vegetarians can't eat beans. i also don't know how to tell you that not every vegetarian or vegan can ingest raw vegetables and fruits, or even cooked ones, for that matter

there are a LOT of health conditions like irritable bowel syndrome, gastroparesis, crohns disease, and other gastrointestinal issues that can cause a person to become very sick or even die if they ingest too much raw plant matter, especially vegetables high in fiber. when these fibers cannot be broken down by a person's digestive system, they can form blockages in the intestines and kill people. not every person on this planet benefits from eating a lot of leafy greans. some people are allergic to chlorophyll. some people are allergic to citric acid. diabetic people have to be careful with certain vegetables and fruits causing spikes or dips in blood sugar, and many people with diabetes end up with gastroparesis, or similar gut issues. there are a lot of reasons why people can't just switch to a diet of salads and fruit smoothies every day.

alternative foods need to be available to everyone, regardless of how much income they make. having safer alternative foods should not be relegated to the rich. these are not just being consumed by spiritual white moms on instagram. these foods need to be accessed by disabled people all over the world.

[thequietesthing]

the incredible harsh quiet revelation that you have when you are diagnosed with chronic illness(es) is that you will never be healthy again. I don't think able bodied people are able to understand what it means to just resign to the fact that your life is not just yours anymore. you share it with a weight that will be with you until you are gone from this world.

[gayaest]

[Description in Alt-Text] 🐛🍎⭐️

Re-done OC: TWIG 🧃

[thatchronicfeeling]

July is Disability Pride Month

Let’s celebrate by keeping disabled people ALIVE and SAFE.

Want to know how you can help?

WEAR A MASK. 

(FFP2/3 or N95 give best protection, especially the ones that fasten behind your head)

[crippledpunks]

if you try to police disabled peoples' diets INCLUDING how they spend their money on food: i just want to ask why? what do you gain from this? like seriously, what do you actually gain from displaying holier-than-thou behavior toward another person's spending and dietary habits? who cares if you would spend your money "better"? you're not them. this is a form of abuse. you literally have no idea what the disabled person can safely digest and actually gains nutrients and energy from. you have no clue, even if you share the same disorder, you are not that person, nor are you their gastroenterologist or other specialist.

telling disabled people to "eat healthier," "eat more salads," "eat more fresh fruits," "eat more fresh vegetables," "eat more grains," and so on can not only be outwardly dangerous for people who have digestive issues like inflammatory bowel diseases, gastroparesis, irritable bowel disease, acid reflux, a history of ulcers, gastritis, and a long list of other digestive health issues, it can outright kill someone if they form a blockage. this can also injure, sicken or kill diabetics, people with non-diabetic low or high blood sugar, blood pressure issues, kidney and liver issues, and many other people.

not only that but you're potentially forcing a neurodivergent person to eat foods that nauseate, sicken, or disgust them, and for what? autistic people know what foods are safe for them to eat. adhd people need to find finds they can manage to keep in their homes without spoiling. dissociative people, people with ADHD, head trauma, develeopmental disorders, other people with memory issues, dementia, alzheimers, psychotic people, and other mental and cognitive health issues need foods they can prepare safely, because many mentally ill and neurodivergent people can't safe;y cook without risk of injury or damage to their home.

people who deal with allergies and intolerances are constantly struggling with being told how to eat when they are the ones who know their experience the most. NOBODY gives a fuck about people with allergies and literally nobody takes food intolerances seriously. i can't digest animal products OR byproducts anymore. i lost the ability. but sometimes i question "maybe i can try it again because this food is cheaper." well. i decided i was spending too much on groceries due to inflation and bought cow's milk instead of almond milk and got so sick it was something i had never seen before. i do NOT need to prioritize "saving money" over eating foods i can safely digest. i had an IBS attack early this morning because i ate some cheese- because it is a "cheap, easy source of protein."

some disabled people need to use certain services like pre-prepared foods being delivered to their homes, be it meals on wheels, or hello fresh. guilting these people for using the services because they could "just cook at home" is insulting to say the least. many of these services have tailored meals with consistent ingredients with limitations on contaminants with allergens.

here's the big one that everyone fucking hates but needs to accept immediately: some disabled people are too exhausted, in pain, dissociated, psychotic, unable to focus, unable to follow instructions, or in other ways unable to cook for themselves and need to use food delivery services like doordash and uber eats.

some disabled people can't or don't want to drive due to their disabilities! blind disabled people exist! para- and quadriplegics exist! people with hand tremors exist! working disabled people exist! amputees exist! disabled parents exist! disabled people who care for partners and family exist!

this one is sooooooo taboo and i'm sick of it. first of all, dashers and uber drivers are every day people who need to earn income. these are people's jobs and their lives are in fact on the line because this is a lot of drivers' primary income. enough with guilting people on this one. i'm fucking sick of it. y'all hate independently employed people and it shows. this isn't a luxury just relegated to rich white moms: disabled people need to have prepared, easy to eat foods delivered to our homes too. y'all need to leave people the fuck alone when it comes to takeout.

the second someone poorer and more disabled than you does something you do regularly, suddenly you're sending articles and giving paragraphs and paragraphs of advice on how to spend money better and how the disabled person "just needs to eat rice, beans, ramen, and frozen vegetables" because disabled people are not allowed comfort NOR convenience in your eyes. this is absolutely asinine. stop it. EATING is not relegated to the privileged

disabled people are people and need to eat. why you are prioritizing money over a literal human need is beyond me this is sick behavior. why do you care so much more about the money than the person ?why is money more important than someone's safety to you? why would anyone rather see someone "spend money the right way" over a human being EATING FOOD and especially foods they KNOW won't make them sick. policing how any disabled person spends their money on food is also unnecessary and abusive. it serves nothing to gain and everything to lose. so what if you think a disabled person spends too much money on food? you do too- we all do: food should be fucking free. get over yourself and let disabled people eat. leave your greed at the door, stop feeling entitled over other peoples' finances and spending habits.

telling a disabled person how to "eat healthier" will not make you healthier, and it will not do them any good, either. all it does is serve to stroke your ego because you believed you ""helped"" someone but all you did was give unsolicited advice that will be forever moot because you do not live in that person's body. don't care if you know them personally: you ain't them. so back off, let disabled people eat. food ain't just for the rich. food ain't just for the abled. let people access food in ways that are safe for us or get the fuck out of our way because all you're doing is causing problems and making disabled people's health problems WORSE.

[spoonful116]

Getting diagnosed with a chronic condition is easy! Just follow these steps:

Have symptoms

Schedule doctor visit

Wait indefinitely

Repeat

[mcromwell]

Ouch!

[mitamicah]

Happy Disability Pride month

Last year I made a post about Jere and his openess with his bowel condition (IBS/IBD) and so I decided to remake the drawing for this year as well as adding in Jere's "partner in crime" Bojan since we know he is dealing with panic attacks (and possibly other kinds of anxiety).

I am very proud of both of them and proud of being a kääryle/baby boo <3

[nightmarekilljoy]

Never thought this would happen but thought that this was my normal up until last year. I thought it was my normal that mild infections sent me to the hospital. I thought it was my normal to have me struggle with digestion, going to the bathroom, eating (not in an ed sort of way), cramps, back pain, joint pain, bone pain, nose bleeds, dizziness, nausea, bladder pain, tinnitus, hand tremors, near fainting experiences, fainting, bleeding, shooting pain, stabbing pain, weak legs, malabsorption, abnormal blood test.

No. Its not normal. It should not be normal.

I am angry.

I am angry at everyone who told me to just exercise, to just eat healthy, to just drink tea, to just try yoga, to just try anything that has never helped me.

I am angry at every misdiagnosis. At every hospital visit spent in pain while doctors did nothing to prevent that pain. At every doctor that said I was too young. At every doctor that dismissed even the concerns of my mother who knew my problems since birth. At every hospital stay spent in pain and without conclusive diagnosis.

I am angry at every family member who called me an attention seeker, who told me my pain was all in my head, who told me my pain was only minor and that everyone else's pain is more important because they're older and I'm young and don't know anything.

I am angry. Terribly angry. It takes too long to be taken seriously and to get a diagnosis. My pain shouldn't last this long. I should have got treatment as a child. I should have been treated.

Its not normal to be in pain every day. Please take care of yourselves.

-Amber (she/they/it/star/shine/rot)

[system-architect]

idek. have some doodles

[spooniestrongart]

[t4tozier]

shoutout to everyone w non-curable illnesses. it may not necessarily be terminal, but just. anyone whose illness can be treated but never cured. or maybe it can’t even be treated properly! if you have to be on meds for the rest of your life, or get surgery, or whatever else you need to do to maintain your health, ily <33

[im-adrienne]

Let me yap about my IBD flare up for a second

We need to talk about our IBD flare ups more often especially how they make us feel, what we have to do when they happen, etc. It's imperative people know how awful it is. They're not just "a little bit of gas" or "just plain old constipation". IBD is a disability. Flare ups are fucking disabling.

This week I'm trying to heal from a flare up. My biggest weakness that brings them on is stress. There's always the possibility of one before/during/after my menstrual cycle. I have pain on my lower right side, hip area. That's where the cecum area is of the colon.

Other things that happen with my flare ups are: low grade fever, extreme fatigue, diarrhea to constipation (and reverse), flatulence, dry eyes, sore throat, dry mouth, lower back pain, bloating, and joint pain.

What do I do? Sleep, rest, lower stress levels, eat soft & vitamin C rich foods, abstain from strenuous exercise, do light stretching, take vitamins, take my meds, take pain relievers, take a non-stimulant softener when the constipation hits, and BREATHE.

Food-wise, I tend to go with things like soft rice, Del Monte peach cups (my favorite), oatmeal, shredded chicken soup (sometimes with cabbage & potatoes), mashed potatoes. Again, all soft and all cooked.

Something that I recommend yet many people are ashamed to talk about or even mention is monitoring one's poops. It is very beneficial to know what is going on with your colon and monitoring your BMs is a good way to do so. There are even apps you can use to keep track!

Just today I was able to discern that my colon is getting better by having monitored my bowel movements. The shape has improved and is starting to look normal!

Monitoring your health is so important...especially if you live in a country that doesn't give a shit if you're healthy or not and makes healthcare a luxury.

[thatchronicfeeling]

Disability Pride shout out to everyone whose disability...

gets in the way of their sex life

gets in the way of expressing and/or understanding their sexuality

gets in the way of their romantic life

gets in the way of intimate relationships

gets in the way of exploring any/all of the above

[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