#illness remission

[thebibliosphere]

tw: content under a cut for talking about calorie counting (in a positive way), restrictive medical diets, and MCAS 'remission.'

So it's been 5 months since I last saw the GI doctor who took me seriously regarding my mast cell dysfunction, and not only have I gained a LOT of foods back into my diet under his care without experiencing idiopathic anaphylaxis, but I've also managed to eat 2000 calories almost every day for the last 5 months.

Prior to his care, since 2020, I had been mostly surviving on a liquid diet with the odd bit of solid carbs and protein when I could handle it.

Which was better than the 2 things I could digest safely prior to 2019, which were oatmeal and filtered tap water toward the end when I was dying. But even after I recovered from that, any time I went over 700 calories a day in solid food, I'd be writhing in pain.

I still have days when the pain hits, and all I can manage is liquids, but those days are so much less, and thanks to being able to eat more foods, I can at least liquidate more nutrients to make sure I'm getting what I need.

Things will never be 100% healed. That's not the nature of this kind of immune disease. But they're better. I'm better. I'm still so scared to say any of this is in remission because MCAS is wildly unpredictable. But I'm so much better than I was.

And I'm going to go happy-cry and eat a gluten-free cupcake about it.

[milezperprower]

ERROR!

502

bad gate way!

[talkethtothehandeth]

“Doctor shopping.” Let’s talk about her.

If you’re disabled you’ve probably heard of this before— if you haven’t, or you’re just unfamiliar in general, or an ableist who says this shit, let’s talk about it <3 because the definition has been overtaken and pissed on by more ableist bitches than the ones who demonized addiction within the medical field and caused this term to exist.

So, “doctor shopping” is actually originated from the people who oversee healthcare, which includes any non medical professionals who are involved in the process as well, like big pharma. It’s been defined (in medical related research journals, not just on social media/ the internet), as “a patient consultation with multiple physicians in a short time frame with the explicit intent to deceive them in order to obtain controlled substances.”

However, you hear in the community, from ableist ableds or even ableist disabled people who are like fucking rabid and frothing at the mouth, gnashing their teeth while flipping over the tiniest of pebbles to find “fakers”, (which is usually an AFAB person with multiple conditions that are followed by a slew of symptoms ranging in prevalence and severity, or someone that doesn’t “seem disabled” who becomes a target). So they call it “doctor shopping” when they see chronically ill or disabled people continue to advocate for themselves by going to countless appointments to try to find out what is causing their health to decline. They (ableists) think that by changing providers or continuing to pursue a diagnosis between multiple providers constitutes doctor shopping. It isn’t our desire, and it’s absolutely exhausting and painful when you’re left with no answers.

If I had not gone to the ER multiple times within two months, I would have died. The fluids kept me alive, and the medicine helped. My mom was preparing my dad for my death, and my fiancée was petrified of losing me because my condition continued to declined. But the entire time I was there, I was terrified of asking for medicine because I didn’t want to be labeled a drug seeker, especially because I’ve been open (for my safety) about using marijuana products. I was crying from how bad it was, my blood pressure was in stage two hypertension from the stress on my body.

They said it was, “nothing to worry about” when I saw my nutrition levels were low. My doctor wants a comprehensive metabolic panel because it is something to worry about because my symptoms were severe. And I had to see another doctor, but that facility ignored me for two months while my pcp and I tried working it out with them. They fucked around with my health for two fucking months. So I had to find a different person, and when I went to her she ordered a procedure, which meant a different facility, which means, yet again a different provider. I even had to go to a different hospital at one point for more tests.

Believe me, we don’t want to go to all of these appointments or see all of these doctors because, half of the time, even though there is something wrong with us, they don’t listen. We don’t want to go back and forth and get more medical trauma just for fun or for a silly little made up diagnosis competition bullshit.

People don’t change their doctors because they want to collect diagnoses like Pokémon, people do it because they want to live comfortably, or at the very least suffer less by finding some sort of direction to move towards to better their own health. I was literally preparing to die from medical neglect, because I did my absolute best and still, to this day, don’t have answers. If I hadn’t sought out more providers, I probably wouldn’t have been able to write this post. I’d be dead already.

This desperate desire to cherry pick what someone shares on the internet about their health and literally fucking stalk people on their social media accounts while looking for any sign that someone could potentially be faking their symptoms is, unfortunately, accepted due to disabled people hating themselves, and ableds hating disabled people. It’s that simple, in my mind.

Other peoples’ bodies, disabilities or symptoms are none of your fucking business, and, yes, this includes the things we decide to share. Disabled people share what we want to, and we live in our bodies 24/7. And some of you really need to sit the fuck down and shut the fuck up about how disabled people manage their health care.

I’m not saying there aren’t people who fake conditions, but I am saying that it’s far less than what you choose to believe. You say you want to protect “actually” disabled people by weeding out fakers, when all you’re doing is harming actually disabled people by playing Sick Olympics™️ and accusing them of faking when they’re just trying to seek out life saving treatment— which includes seeing multiple providers to dig deeper for a diagnosis, no matter how rare or outlandish you think it is. You don’t get a medal for harassing disabled people, you’re just a piece of shit.

[summer-arts]

respectfully, katie reminds me of my ancient diabetic cat who decided to stop being diabetic so he could continue living to shit on my floor

[arithmonym]

there should be a train between [redacted city A] and [redacted city B]. for Me

[kirby-the-gorb]

I just bought myself a manga about the artist going through severe illness and I found it comforting to read someone else's experience, so I thought maybe I would share a little about my experience with MCAS again. so here's all the pills I take!

cromolyn. 2 ampules mixed with water 4x/day (although I'm often out of bed for 12 hours or less and have trouble keeping track of time, so often it's 3x instead). mast cell stabilizer.

multivitamin. I only took this for a week so far and stopped to gather data. (my paranoia was getting bad, which often means I'm reacting to a med. this is a cheap one with many fillers.) meant to make up for difficulty accessing food and possible malabsorption.

fludrocortisone. 2 pills a day. for POTS.

atenolol. 1 per day. also for POTS.

montelukast. 1 per day. technically for asthma, but works by blocking one of the signals the mast cells send.

loratadine (aka claritin). 1 pill 2x/day, which we had to fight the insurance about after a while. antihistamine, meant to prevent anaphylaxis by blocking a different mast cell signal.

aspirin. 2 pills 2x/day. to reduce inflammation and control chronic pain.

whichever oral hormonal birth control my insurance will give me (it varies). 1 per day. menstruation makes my MCAS flare and I still have incomplete cessation even after an ablation, so I keep taking it even when not putting myself at risk of pregnancy.

dye-free diphenhydramine (aka benadryl). another antihistamine, taken when my MCAS flares to reduce or completely end the symptoms. (the pink dye in the regular formulation is actually a very common trigger.)

low-dose prednisone. steroid kept on hand for unavoidably high-demand occasions (like moving across the country) or unshakable prolonged flares (like, a week).

that's 8 pills in the morning, 3-4 at night, 8 ampules in the day, and 2 different emergency meds. plus I try to drink a gatorlyte every day (also good for POTS and certain mineral shortages) and try to avoid triggers (including heat, stress, and overexertion -n- )

3 and 4 were the first meds that ever made me feel any better, before we'd figured out it was MCAS. (likely with secondary POTS/EDS.) 6 and 7 are the first line treatment for MCAS, they're the first medications I actually took *for* it. they are often used in combination with famotidine (aka pepcid) but that made my paranoia super bad so I stopped taking that one.

this was my regimen established before I got covid last july, which made my MCAS much worse, which also made it impossible to get a new doc post-move since I can't physically get to an appt. so this is likely to change once I have medical care again. being sick is a lot of work!

[rhube]

Please click through to watch the video - she says it better than I could, but basically, the Remission Biome project is looking of small donations to show big donors that they have support from the ME/CFS community - that trialling a combination of treatments that together bring significant, rapid improvements, is the way forward - so the people with $100,000 to spare know it's a good place to spend that money, instead of yet another trial of 'psychological' treatment or a drug that may not do much on its own.

This is great because people without much money can make a huge difference. If you have $5 to spare, spending it here could help show the people with the big bucks where to put it.

Please consider donating if you can. Please share if you can't. The future is so uncertain for people like me with ME/CFS.

I can't live like this forever. I can't afford to live like this forever. But I'm not asking for you to donate to me, I'm asking for you to donate a small amount that could help change the lives of millions of people. And with the way COVID is being allowed to spread, maybe you one day.

This kind of patient-led research is SO vital after decades of wasted research led by doctors who simply didn't believe what patients were telling them. Please show the big donors that this is the kind of research we want.

[midwestsad]

bpd coping mechanisms that aren’t awful that i used before and after remission

- putting my energy into making playlists during episodes or mood swings to match how i was feeling

- light arm exercises when angry, you can find good examples of arm exercises online. or exercise in general if your body allows

- writing in a diary daily or when i needed to vent instead of trauma dumping online / to friends. noting events leading up to episodes, potential triggers, how i feel (emotion wheel is helpful), where my emotions are physically, what i did that day, etc. (also helps if you need to keep track for therapy)

- using Finch app (android + apple) to manage tasks, manage splitting, practice journaling, practicing empathy, and using emergency coping skills

- managing hunger / thirst cues to prevent mood swings or episodes

- guided and sleep meditations on youtube or spotify before bed or during an episode

[pencilofawesomeness]

Erik as Collei

Because it suddenly occurred to me that two characters that I love overlapped a little too well. And because drawing AUs gives me pleasure. So I redrew one of Collei’s panels from the manga.

Erik and Collei both be like

✓ Snake-affiliated ✓ Given ancient power by mad scientist ✓ Enslaved in their youth ✓ Caustic AF as a defense mechanism ✓ Scales.......on arms....... (*cries*) ✓ Paralysis stuff....... (*cries some more*) ✓ Actually soft when calm/relaxed ✓ Wants a damn break

[afniel]

Every morning my brain spins a little wheel and picks what's going up be fucked up that day. Usually it's my pain perception or energy level, sometimes it's my mood, sometimes it's my sense of balance and I could do without that, but VERY OCCASIONALLY it will Mad Lib slap together, "TODAY'S BROKEN THING: your (noun:[ability]) (verb:[to sense that]) (object:[you are disabled])," and today is one of those days. I feel fucking good? I slept well? I jogged big sections of the way to lunch because I could? My legs didn't cramp up? I'm in a super good mood?

This happens so rarely that I actually register it as a problem and go through the day thinking, oh no have I finally developed bipolar, is this mania, and it's like, no, dipshit! It's functioning. Of course it feels good and you feel good about it. There's nothing wrong with having nothing wrong with me for a moment. You really don't understand how disability changes you until you're wondering if your temporary relief is a mental illness...

But enough of that, I'm having a good day and I hope everyone else is too, and if you aren't, I hope you'll have one very soon. 💜 ✌️

[chronic-gastro-illness-culture]

Gastroparesis culture is going into remission for a few years and thinking ur all good now but then you realize one day that your symptoms have been slowly coming back for months after your housemates confront you about how little you’re eating and you’re like well shit here we go again 😭

.

[apathyandmischief]

Also sorry small rant, but I'm so fucking sick of the American medical system right now. My insurance wouldn't pay for Botox for chronic migraine until we could "prove" they were intractable. So the INSURANCE, not the doctor, required that I try all of these different meds. And I am someone who is extremely susceptible to side effects. They had me on triptans that made me feel like a zombie, anti-epileptics that made me so manic it's not even funny and made me want to unalive myself, and various ODT meds that I'm not convinced weren't sugar pills. All of this over the course of a year, wherein now I have no idea of my mental health is fucked because it's fucked or because it's been fucked by meds. Finally get through all of these just so I can get Botox. The appointment has been scheduled for months now. MONTHS. I get a call today, on the DAY of the appointment, that insurance still hasn't approved me!! The neurologist tech put in an urgent request again today, but that's no guarantee it'll get approved. And I know the Botox brand does a reimbursement program for qualified medical conditions (which is lovely and awesome), but you have to actually pay first and then get paid back, which is a massive inconvenience to probably drain my savings for a while and wait for weeks for a check to pay it back. I just need to scream for a minute.

[phantomoftheorpheum]

.

[failuredyke]

today i said the words 'whats cooler than a clean bill of health' and mostly meant it so like u can just put me down already i guess

[masaotheheckindog]

every few weeks on a certain crohn's disease-centered online space I will see someone be like 'I don't understand why I'm constantly flaring when I eat a raw vegan diet but when I'm eating fast food every day I feel great!' And it's so frustrating because it feels like it should be more common knowledge that a low residue/low fiber diet is what you need to eat when you're in a crohn's flare. Processed food is going to reduce your flare up symptoms and make you feel better. White rice/pasta/bread, protein rich broth/easily digestible meat and fish, potatoes, foods high in salt and sugar are your friends. Seems like most people, myself included, can eat a good amount of fruits and vegetables when in remission, but not many of them raw, unless they are not super high in insoluble fiber (and everyone is different so it takes trial and error). Diet culture has destroyed the ability of people with IBD specifically to get accurate information on how to eat during a flare up and what foods to be careful about. People without crohn's get like... angry at me when I talk about how to ear during a flare??? Because it's "unhealthy" food. I'm inclined to think that eating in such a way to reduce internal bleeding and intense GI pain is healthier than not.

[corpseprince]

needed claudia image like air claudia 😭😭 CLAUDIA 😭😭😭😭 girl dead twice over !!!!