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#MCAS
chronicallydragons · 2 months
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anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me
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roboticchibitan · 24 days
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Had a virtual appointment with my doctor. And she just?? Listened to me?? And took my opinion into account??? Like a rational human being????
I've been getting up 2-4 times a night to pee and peeing frequently during the day and she asked me "what are you looking for out of treatment" and I said "Ideally I would like a medication I could take in the evening that would last as long as I am sleeping and then wear off, but I know most meds aren't that specific" BUT THERE WAS!! A MEDICATION!! LIKE THAT!! She prescribed me a medication that's normally given to kids who wet the bed that mimics the hormone we naturally produce at night that keeps our kidneys from manufacturing as much urine. The wonders of modern medicine.
And then!! I was like "I'm having reactions to food and I'm fairly sure it's MCAS because last week I ate one of the foods and got itchy but before that it was racing heart/shaky/nauseous/feeling faint/feeling like I was gonna die and I just wanted to make sure you didn't think I needed to check my blood sugar" and she just??? Agreed with me!! She said "yeah you're right it's probably a combo of MCAS and POTS." Like!! She listened to me and just fucken. Agreed! No fight to justify myself!!
I feel like I won the lottery and if she ever quits I will be so so sad forever.
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thebibliosphere · 3 months
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Sorry for being weird on your post, but has any East Asian person gotten upset about your allergy? Hopefully you were gracious and civil and not a racist about that. There’s been pseudoscience regarding MSG and East Asians have been wrongly slandered for it when a 7-11 hot dog has more msg than a pile of steamed dumplings from a takeout restaurant.
I had no idea what post you were talking about; I had to go look. No idea why that old post started circulating again, but thank you for the addition.
You're right; even though I didn't mention MSG anywhere in that post, there is a lot of pseudoscience around it, and it's heavily steeped in racism.
While I've never had anyone be mean to me about it (at least not once I've explained what MCAS is), it's still very frustrating if I mention being sensitive to MSG because people immediately assume I'm talking about East Asian foods when, as you rightly pointed out, there's more MSG in your average American hot dog. Not to mention pizza.
While I get very, very ill eating things like steamed dumplings (sadly, I used to love them!) I'm going to get equally ill from eating things like tomatoes and certain cheeses, which contain MSG naturally.
Trying to explain that latter part to some people really makes their heads explode, lol. Because, yeah, MSG occurs naturally! It's flavorful and not harmful -- it's just not good for histamine-sensitive people!
Unfortunately, MCAS/HIT awareness isn't great, so people assume their symptoms are because "MSG is bad" and not because they're sensitive to histamine. It sucks. I wish people were more aware.
This is why whenever I talk about MSG I'm mindful to frame it in the above context. MSG is a safe flavor enhancer that occurs naturally and that can make some people ill because it is a histamine liberator.
The same is true of yogurt, fresh fruits, vitamin C, and a whole host of other nutrient-dense, vital foods. It's the disorder that sucks, not the foods!
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mellosakicc · 1 year
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tight tight tights!
inspired by some spencer’s hosiery. just wanted new tights in my game
base game compatible
m&f - teen thru elder
enabled for random
custom cas thumbnail
download (simfileshare) | download (patreon - free)
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98lindsey · 1 year
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I was out with my family for my birthday at a restaurant when I started having an allergic reaction. So I pulled out my IV stuff to give myself something to stop it and my dad asks:
“Do you want to go in the bathroom and do that”
I laughed a little “um, not really”
I understand it’s a little strange for me to pull out needles and meds and everything in public, but the restaurant bathroom is the last place I want to be when setting up something to inject into my blood stream 😬
Can we normalize people having to regulate their bodies with medication in public please?
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chronicallybubbly · 7 months
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geeses · 2 years
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Chronic Illness Tools Master post
Hi! I'm Laura. I am disabled with Ehlers Danlos, MCAS, and POTS. Here are a few mobility aids, physical therapy tools, braces, comfort items, and other things that I have acquired over the years that significantly increased my quality of life. I hope it helps someone.
Mobility aids:
Folding cane
Instant seat
Shower stool (nice quality)
Shower stool (cheap but works)
Physical therapy tools:
Exercise ball (small)
Exercise ball (large)
Exercise bands (with handles)
Yoga wheel
Cervical traction
Resistance bands
Theraband (get that GRIP)
Foam roller
Grip strength resistance bands
Adjustable ankle weights
Braces:
Neck brace
Wrist widget
Thumb splint
SI Joint Belt
K-tape
Knee brace
Wrist braces
K-tape (non-bulk)
Back brace
Elbow brace
Comfort items:
Heating pad
Neck and shoulders heating pad
Massage gun
Hand fan
Acupressure mat
Large Icepack
Leg pillow
Neck pillow
Bulk epsom salts (guess this could also go in the next category)
SALT:
Saltstick fastchews (orange and watermelon are my favorites)
Salt pills (that don't upset my tummy)
Cell Salts (these help my migraines)
Misc:
Quercetin (for allergies)
Neti pot
Bug bite thing
Hand warmer
Bed tray table
Toilet seat cushion
Yoga swing (yeehaw cowboy)
Cooling towels
TENS Unit
Huge Mason jar pitcher thing (revolutionized my access to water)
Pulse oximeter
*Notice* All of the above WERE Amazon Affiliate links. They no longer bring me money because Amazon decided that Tumblr is not an authorized site to use links on. Fuck amazon. I worked hella hard on this list.
I am a disabled queer artist. As I'm sure you know, it is very expensive to be disabled. These links won't bring me anything other than the joy of helping someone else. Please enjoy and share! Knowledge is power.
if you are feeling generous, here is my venmo for tips.
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b0dyhorrors · 8 months
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happy disability pride month to people who are allergic to medications! happy disability pride month to people with common drug allergies! happy disability pride month to people with rare drug allergies! happy disability pride month to everyone who has ever had to stop a doctor from prescribing them something they're allergic to!
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stagegoose · 6 months
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shout out to those of us chronically ill people who have stacks of rare diagnoses that took years or decades to dx. Shout out. to those of us in those categories who had earlier diagnoses questioned because of our other, at this point undiagnosed, rare illnesses.
To have a doctor look at something very concrete and telling of a certain diagnosis (for me, it was a muscle biopsy that showed a very obvious mitochondrial cytopathy) and go 'nah i don't think its actually this thing we have evidence of' because you also have another completely unrelated rare illness is gross and inexcusable.
If you are in this situation, i pray that things prevail for you. Remember that you know your body far better than any medical professional ever will, and that no matter what they say, you're not crazy for having inexplicable symptoms.
to deny the idea that someone can be doubly sick with three or more different rare illnesses when we know so little about genetics and all the different ways the human body can screw itself over is extremely and without a doubt idiotic. we all deserve better.
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cosmiccripple · 6 months
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do you want to know what I miss, as a disabled person? the ability to have a hot shower without passing out and feeling extremely nauseous
just because there's nothing quite like a hot shower after a long and tiring day
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thecovenhouseco · 11 months
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Slowly realizing that you may not be able to work anymore if you actually want to treat some of your disabilities feels like you’re being crushed like a hydraulic press. I’ve worked so hard, and I’m afraid that it was for nothing. So if you’re struggling with the same thing, I’m proud of you for all that you’ve done.
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chronicallydragons · 2 months
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Very rude that fun spoons are still spoons
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kirby-the-gorb · 28 days
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we are about an hour into rare disease day in my timezone! (it's always the last day of february, whether that's the 28th or the 29th.) the true prevalence of mast cell disorders is unknown, as they are often misdiagnosed or ignored. and mast cell activation syndrome, the most prevalent kind of mast cell disorder, only had diagnostic criteria laid out for the first time in 2010. so whether or not it's truly rare is really up in the air!
(personally I suspect it is just aggressively underdiagnosed but I'm not a research scientist or diagnostician right now. and even if it is rare, it's gonna be a lot less so than it was 5 years ago as certain respiratory infections are known to trigger it into visibility. that's what happened to me when I got mono at the end of 2015, further compounded when I got covid in 2022.)
all chronically ill people face a lot of hurdles when it comes to seeking diagnosis, accommodation, and treatment (all of which can be severely complicated by any intersecting marginalities), but rare diseases present a special challenge.
for example, I have an immune disorder. my immune system does not like being alive, my mast cells are way too jumpy and throw a tantrum over every little thing. you'd think an immunologist would be the one to treat me, right?
I've had 6 immunology referrals rejected in the past 9 months alone. multiple major immunology clinics in my major city tied to a major research university outright refuse to see patients with "mcas" written anywhere in their chart.
after 8 years of being debilitatingly ill, and suspecting it was immune mediated for 6, and getting it confirmed beyond a shadow of a doubt by the bone marrow biopsy last month, I will have my second ever appointment with an immunologist. another 2 1/2 months from now. the first immunologist lied to me about the reliability of the one available blood test, when I first came up with the hypothesis by myself 6 years ago, and forced me to abandon my (correct!!! now proven!!!) hypothesis for 3 entire years while we wandered around lost and got nowhere other than even more thorough process of elimination.
okay, well if my immune system is attacking me, maybe it's technically autoimmune? that's the rheumatologists instead of the immunologists, what do they have to say? dick all my dude, I don't have rheumatoid arthritis so they just shrug at me and go "idk, fibro? I don't know why you're here" and send me home with nothing. (I literally had a rheumatologist say to me, verbatim, "I don't know why you're here." buddy it's your job to read the chart and decide if I get seen or not, you tell me. at least he had a snazzy outfit.)
being chronically ill can be a terrible struggle no matter what, but a disease that is perceived as rare, accurate or not, adds a whole new layer of bullshit. (and of course there are much much rarer diseases out there, with even more hoops and dead ends and struggles and all-new layers of bullshit that even I don't have to deal with!)
anyway I'm having a shit time and using this awareness day as an excuse to productively bitch about it 👍
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thebibliosphere · 2 months
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Eyeing the ingredients on a pack of Percy Pigs and wondering if it’d be worth risking it...
Like most of the ingredients are low histamine (except the massive amounts of citric acid), I might be fine with it... Maybe...
(for context: these are my favorite candies. I ate them all the time back home before developing full-blown MCAS. I miss them.)
Maybe I’ll wait until I get me new epi pens. Just in case.
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mellosakicc · 2 months
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life's a bitch hair
an anon a while ago suggested making maxis match recreations of alpha hair, so here is another one. this is based on s-club's "life's a beach" hair.
it's not an exact replica, but i like how it looks! no hat chops :(
base game compatible
m&f - teen thru elder
enabled for random
custom cas thumbnail
download (simfileshare) | download (patreon - free)
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tightwadspoonies · 16 days
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Recipes
Recently my wife and I have been offering our cooking/recipe creation skills on reddit to anyone who has a very limited diet due to food allergies/intolerances/MCAS, GI issues, or any other problem that limits a diet to very few foods.
If you're someone who might benefit from this, send your safe foods to our inbox and we'll post a couple recipes!
You can absolutely do this on anon if you are more comfortable. I can also make meal shake or tube feed recipes.
Note that we are not nutritionists, we just like a good challenge and helping people eat their best.
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