#mals

[a113cowgirl]

I’m in the hospital unexpectedly for a few days and FEROCIOUSLY consuming Stolitz content to survive/heal myself ♥️🥰

Pls send your fave stolitz fanfics, one shots, fanart, COMICS, especially 🥹👉🏻👈🏻

[horce-divorce]

so for anyone who's missed this convo since it's still relatively fresh even for me:

I spent over a decade searching for answers to my gastrointestinal pain & dozens of other symptoms only to be dismissed time and time again.

I finally got diagnosed when my gastro said "your GI stuff keeps coming back normal, but has anyone looked at your veins yet?" I was ultimately referred to a vascular surgeon and diagnosed with MALS, something I had never heard of in my decade of research and being a guinea pig.

If you have chronic, debilitating symptoms that seem to revolve heavily around your stomach and guts, but that doesn't actually show up on any testing, look into vascular compressions. (MALS, NCS, and SMAS are 3 that I know of.)

Yeah so it turns out all of your organs need blood to work properly, and when they aren't getting enough, a lot of weird stuff can happen. It's considered rare and is very poorly understood, but a lot of MALS patients were at the end of our ropes after years of being told it was all in our heads, only to find out, no, actually, my stomach is having what is effectively a heart attack when I try to eat- however technically speaking my stomach isn't the issue, it's the blood flow to it.

don't give up on answers just because they aren't readily available. I shouldn't have had to wait 10 years, but it's still worth it after all this time to know for sure, and to have some idea of how to prepare for the future. the human body is exceptionally complex and weird and so is the world we live in, a lot of things can go wrong with a body and we don't even know all of them yet.

[smeetlinglord]

If I seem like I'm doing badly I kind of am right now. The state I was forced to migrate to bans one of my medications, so I've been consistently in pain and emotionally fucked up. I've been starting to notice my MALS getting worse ever since finishing my last dose early this week. I don't have full blown food intolerance, but it hurts to eat and I almost always feel like blowing chunks.

[allergictogravity]

*me noticing I have a high heart rate not knowing why

Me: why this time body? I’m sitting down? 🤨

Body: You dared to have dinner

Me: Oh for f***s sake…

[cricketcat9]

Micronesian stick maps

are a form of Marshallese map used in canoe navigation have been gaining popularity among collectors. There are two types. The meddo has cowrie shells which represent islands or atolls and sticks to depict navigation through currents between them. The rebbelib is a more abstract map with only sticks which is used to train novices. Older charts made in the traditional way generally have sticks tied on with twine, while modern charts are glued together and often have labeled islands.

[oliveasaltylife]

[malnutrition, food, medical diet, weight discussion]

My entire body hurts so bad today and I am so exhausted despite having like 10 hours of sleep. My body and nervous system are so overwhelmed from malnutrition on top of my usual complex chronic illness stuff and it is seriously difficult to come out of it. The intense fight or flight response that I’ve been in for months feels never ending and nothing has really been able to calm me down. I was always aware of physical effects of malnutrition, but my level or anxiety is higher than I’ve ever experienced and my dissociation threshold feels nonexistent. And the worst part is knowing that food will help, but if I overdo it I’ll end up in the hospital again with significantly worse symptoms.

I’ve unintentionally lost so much weight over the past few months because I haven’t been able to eat normally and I don’t tolerate my Soylent meal replacement shakes anymore. It’s quite scary watching my body change like it is and that definitely confounds my anxiety. I’m really glad my pcp was able to get me a prescription for a meal replacement shake because I really don’t want a feeding tube and am doing everything that I can to avoid one. I just really miss food and making meals, which is making my medical diet more difficult. (It helps knowing I absolutely can not tolerate the pizza I really want, but it’s just hard restricting myself so much).

And it’s so fucking difficult to actually hydrate myself and stay hydrated even *with* IV hydration. I am really so miserable and in so much pain and so nauseous.

[midnightkissme]

How does one reintergrate after chronic illness?

Social gatherings are awkward, "oh why are you x"

"well I've been sick for a while now, like 3 years, it's chronic"

"Oh, I'm so sorry, I hope you feel better soon!"

*internally screaming*

[happy-duck]

Stranger Things has been one of the few comfort distractions I've had since I became chronically ill. 15 year old me was thrilled with the distraction it brought while watching it for the first time in the summer of 2016. Not much else could take my mind off of not being a "normal" teen. That's why I love it as much as I do 🥺

[adorcability]

As someone with chronic illness, I’ve been told to “get well soon” more times than I can count, and while I appreciate the sentiment it’s just never what I really needed to hear. I made a card with everything I wish someone would have said to me, and hope it can bring joy to other chronically I’ll folks too.

[bbqbastard]

Döner Kebab met zwarte looksaus maken op de BBQ

[miss-paulakay]

some days are extremely hard❤️‍🩹 #repost @simplyspoonie Chronic Illness Reminders ♥: 🧋Your worth isn’t measured by your productivity 🌻Your feelings are valid and deserve space 💊Your illness is not your fault 🌈 You are not responsible for explaining your illness to anyone 🍓Your illness doesn’t make you weak 🩹 You are a warrior and deserve to heal Your chronic illness doesn’t define you. It will dictate your days make you feel cursed from time to time but you are not just your illness. You have an individual story to tell. A name, a history, a personality. Staying yourself is part of the battle. Post: @simplyspoonie Feel free to repost this if you want! #spooniecommunity #spoonie #chronicillnessquotes #chronicillness #invisibleillness #disability #autoimmunedisease #mentalhealth #lupus #crohnsdisease #colitis #mals #diabetes #cancer #arthritis https://www.instagram.com/p/CeZMHjhKyWxi7cLE1aACP2Yem57BktxEKPcRoM0/?igshid=NGJjMDIxMWI=

[lindgrenjulie]

#Repost #chronicillness #lupus #lupusawareness #lupuswarrior Post: @simplyspoonie Feel free to repost this if you want! ✨🌈 #spooniecommunity #spoonie #chronicillnessquotes #chronicillness #invisibleillness #disability #autoimmunedisease #mentalhealth #lupus #crohnsdisease #colitis #mals #diabetes #cancer #arthritis https://www.instagram.com/p/CebER2ytwRw/?igshid=NGJjMDIxMWI=

[horce-divorce]

i'm so over this delta 8 shit. like yeah it's better than not having anything but it's not weed and it's not doing the same thing. i miss weed so much. d8 makes me cough so bad, it's weak as hell even when it's really good stuff, and it seemingly has 0 cbd compounds unless you buy the more expensive, cbd added/"live resin" type stuff. it doesn't help my pain at all, and its so much more expensive than weed no matter how you slice it. plus we always need more of it bc it's so weak. those 1g carts from Michigan were lasting Bel and I about 3 days each between the two of us. we go through a whole 2g cart of d8 in that amount of time or less. it's ridiculous.

and the thing is, when i lived here before, yeah, i had like 3 or 4 weedguys i could rotate between to get real stuff anyway. not so anymore. i've been gone for almost 4 years and they've really been cracking down on drugs around here in the interim. it's given the d8 market a massive foothold, but it's seriously been impossible to find a regular weedguy. every time we've almost found a lead, we start hearing about raids or the guy goes MIA. we'd basically either have to drive to the border ourselves at this point, or just cave and use the d8 that's available locally. and we're broke, so we've been doing the latter, obviously lol

weed has been keeping me off a feeding tube for years. my doctors in michigan told me outright to keep using it because they didn't want to prescribe me opioids. and then i move back to the only state in this whole area where weed is still illegal lmao. d8 has been keeping me off a tube lately, but tbqh i don't think it will continue to. my MALS attacks have been getting more frequent (which makes my POTS a lot worse), I'm eating less again, and even when i do manage to eat, it takes so much out of me and is still so painful, I usually end up having to sleep afterwards. i'm losing so much of my day just for having the audacity to feed myself and it's making me depressed again. i'm even on an antidepressant this time!!! it's also helping a little bit with the pain, but not enough to matter in the long run. i'm still gonna end up on a tube at this rate.

i'm also just sick of living in wisconsin so that makes me cranky, too. i love who i live with, being with my boyfriend and my roommate is great, but i've spent like 16 years living in wisconsin against my will already and somehow I KEEP fucking ending up back here, always against my will, and it's always pissed me off, but now it ALSO has the audacity to be the one (1) state in the whole area that won't let me have the one medication all my doctors have agreed is saving my life. every other state touching us, on every single side, has weed. canada has weed. 24 fucking states have legalized it. but no, wisconsin has to stick it's heels in the mud and keep that boot on our necks at ANY cost, especially over a change that would benefit literally everyone and increase revenue overall. i fucking hate it here.

america as a whole needs to get it's head out of it's ass about pain management. not just cannabis, but opioids and any other alternatives, too. but of course, the cruelty is the point. they want us to be suffering. they want to torture us. they want us to be stuck in ineffective health management loops until we die. more profit for insurance companies and hospitals, less "handouts" needed back, less conscientious objectors and protestors and political dissidents to be bothersome, less noisy disabled voices calling for justice in the world.

i am determined to keep trying to manage my MALS for as long as I can without getting surgery and, hopefully, without being on opioids (not because I buy into the fearmongering, but because of how strict the rules are about being prescribed them, about the lists you end up on, the random piss tests, and all the other bureaucratic crap that comes along with it). and if we end up staying here long-term, then yeah I will be doing everything i can to try and get weed legalized here to.

but i'm just pissed. and tired. i'm sick of having to fight for my stupid little life from every single facet, like, i'm fighting for my life and kicking screaming throwing up etc and it barely even amounts to a squeak in the grand scheme of things.

welp. too bad. i'm surviving out of spite. oh, i don't matter? cool, then it won't matter if I stay alive a bit longer and keep taking those pithy handouts, i guess! thanks! 🤪

[smeetlinglord]

Hi @horce-divorce friends and loved ones!!! It's me, Smeetlinglord, otherwise known as Jimmie's boyfriend, but you can call me Bel!

Jimmie and I are both disabled, impoverished, and homeless as fuck queer trans dudes whose car recently went out. We both live in this thing, meaning we are effectively stranded here boarding with Jimmie's friend's family, including with the friend's dad, who I call Old Nasty Man - he bleeds all over the place because he doesn't properly dress his foot injury and leaves it for us to clean up, breaks shit, leaves unwashed sticky handprints all over communal areas, doesn't mask, doesn't cover his mouth when he coughs or sneezes, makes a disastrous mess wherever he goes and, again, leaves it for us to clean up, and doesn't even have the decency to not bother us in our shared room when he's drunk. More to the point of why we need to leave ASAP, because ONM is a HUGE risk to our health since we are both immunocompromised, and we've had enough of crappy inconsiderate people by now, since becoming homeless puts a giant target on our backs for mistreatment! FUN!!!

Anyway, we had NO IDEA if replacing the battery would work. The Murano is like 17 or 18 years old, has electrical issues, and makes a weird noise because the bottom is pretty rusted and it needs an oil change. Jimmie especially has been at his wits end because Wisconsin is his own personal hell world due to his trauma history, and the car is his only sense of freedom and autonomy. So, while our car has been broken for weeks now, he has been super stressed and worried to literal sickness; both our MALS, POTS and EDS has gotten worse because of this enormous setback!

So, here is a crappy quality video of Jimmie starting the car with the new battery in it! It worked!!!!!!!

[maldemer]

a wikipedia poem on software entropy

[thunder-robots]

TOURING THE WEST TOWN MALL