thebibliosphere · 17 hours ago
I'm being brave and just tried a new moisturizing cream on my face.
I've done numerous patch tests to make sure I'm okay with it. Going into anaphylaxis that one time from sunscreen really left a mark on my psyche for trying new products (fellow MCAS folks should probably avoid Alba sunscreens). But there's still that lingering fear that once I put it on my entire face, I'll react to it.
I really hope not, because ten years of not being able to use a proper moisturizer during the Minnesota winters has destroyed my skin barrier.
There's only so much a thin scraping of olive oil can do against -40'c.
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mellosakicc · 2 days ago
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dismember tees
for a patron. fem swatches might look a tad different from the male ones unlike usual, cuz my computer was giving me grief so i had to do it differently this time.
base game compatible
m&f - teen thru elder
enabled for random
custom cas thumbnail
download (simfileshare) | download (patreon - free)
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geeses · 4 months ago
It's so weird to be disabled and have able-bodied people be jealous of you because "you don't have to work".
Like, homie. My body doesn't work. My brain barely works. You don't want this.
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anexperimentallife · 10 months ago
Among the more ridiculous bits of disk horse I've seen recently is the assertion that neurodivergent and mentally ill folks using spoon theory is "appropriating" terminology from physically disabled folks.
And listen, as a Certified Cripple(TM) who also happens to be a Certified Mentally Ill(TM) and a Certified Neurodivergent(TM), that may not be QUITE the most ridiculous thing I've ever heard, but it's close.
If spoon theory helps you describe your situation, use it. If anyone complains, stab them with a fork.
As for fully abled NTs using it, idgaf. Unless someone can give me a compelling reason why spoon theory shouldn't be normalized, I'm fine with it, as long as they get where it comes from and grok that they (generally, but not always) start each day with a shitload more spoons than we do.
Like, if a fully abled NT friend were to tell me their partner ditched them, their mom was in the hospital, they lost their job, they failed am important exam, and they didn't have the spoons to make themselves dinner, the LAST thing I'm gonna do is clutch my pearls about them using spoon theory. More like, "Come on over, homie; I got some leftover adobo in the fridge, and you can vent all you want while we eat and watch Ponyo."
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all-that-feminist-drama · 4 months ago
Halsey coming out on their Insta story with their diagnoses of EDS (Ehlers Danlos Syndrome), MCAS (mast cell activation syndrome) and POTS (post orthostatic tachycardia syndrome) is a huge banner moment for zebra & spoonie visibility and awareness and I stan a zebra queen. Thank you for your honest, raw presence here with us.
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autisticeducator · 8 months ago
Hey fellow MCAS/MCAD patients:
Pubmed has provided us a nice, well cited list of medications where the active ingredient is what causes a mast cell deregulation.
This is an important list given beta blockers are often prescribed for POTS but can make MCAS worse. Wellbutrin (Bupropion) is often prescribed off label for ADHD. Topamax (topiramate) is often prescribed for migraines, chiari, and seizures. Both CT and MRI contrast can cause a reaction.
The one thing that should be on here and isn’t is IUDs. The research has indicated that not only does the uterus have mast cells but they increase after IUD insertion. For those of who need hormonal birth control because our MCAS flairs with hormonal changes, monophasic continuous birth control pills, the arm implant, and the depo shot might be options to consider with your gynecologist.
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maviedemerde · a year ago
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wobblefloss · 3 months ago
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It's not always obvious what's wrong.
Hi, Doctor. I'm tired. Like, all the time.
No. All the time. I wake up exhausted. I fall asleep at work. I fall asleep in the shower. I'm scared to drive.
No, Doctor. You don't understand. I'm not 'sleepy.' Not 'drowsy.' I'm tired in my bones. My blood feels heavy. The weight of my head hurts my neck. I can't think sometimes--I forget how to read--i get lost in familiar places! I say 'tired,' but I mean that 80% of my life, I feel like a sloppy heap of mud splattering and crumbling from too much moving, too much thinking, too much feeling, too much light, too much noise, too much everything. I'm confused and disoriented and like I'm in a terrible dream.
That's a symptom of a lot of things?
Anemia. Migraine. Sleep apnea. Vitamin deficiency. Thyroid dysfunctions. Brain diseases. Heart diseases. Neurological disorders. Blood disorders. Autoimmune issues. Depression and other psychiatric conditions. Lifestyle choices: sleep, food, activity level. Environmental factors: mold, pollution, allergies.
There's a lot of testing to rule things out, huh? Could take years? Yes, I know it will be expensive. Yes, I accept that some of the tests will hurt. Yes, I commit to rearranging my eating/sleeping/exercising habits and seeing every recommended specialist.
Doctor, you don't understand. Either we find an answer, no matter how long it takes, or I am trapped outside of the world forever for no reason. Not testing won't make these horrible feelings stop.
Can you imagine feeling this way? Always? During your friends' birthdays? When your boss demands work? When you're home alone in the middle of the night trying to remember how the sink works? During the commute. During the shower. Taking out the trash. Feeding the cats. Staring at your bills. Talking with your family. For years... weddings, funerals, holidays, weekends, 4am, 4pm, when your loved ones need you, during every emergency, while you fail at your job, at your hobbies, at your relationships, at being your basic self?
Fuck, Yes! Doctor! Run! The! Tests! We are burning daylight!! Let's get this ball rolling! Journey of a thousand miles, begins with single step, etc!
I do want to feel better. This is not my imagination. It's not my fault. I am a reliable witness to my own life and I don't care how many tests 'come back normal.' Those must be the wrong tests to find what's haywire. I know something is wrong and even if we can't fix it, I must understand it.
I'm now in year 7 of trying to improve my situation. I know so much more about my conditions than I did. I am getting help. I still don't have a full picture. I'm still disabled.
But it's not like it was.
Please. Don't give up. Diagnosis can take years. Some people never get a firm answer. Regardless, you will learn ways to cope. You will meet people who help you cope. Don't give up on yourself. You are worth the effort.
Seems like something we should all know.
Disability happens to people without our control or consent. Every single disabled person has strong feelings about their own situation and I would not presume to talk about anyone’s thoughts but my own. But none of us chose to do life on hardmode, so if the world could listen this month, there’s a lot to say.
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98lindsey · 2 months ago
What people don’t understand is that I could probably maybe push myself to do that thing, and may have done so in the past. But the effects of doing that thing can and likely will have consequences for days.
I’m not lazy, I’m just trying to control my chronic illness.
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cushfuddled · 4 months ago
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Me on my way to the kitchen to make myself a raspberry mocha
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gayaest · a year ago
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We aren’t “differently-abled”, “handi-capable”, or whatever Abled’s call us. We’re disabled. It’s not a bad word.
Image description: [a photo of a young male adult in a yellow and blue manual wheelchair, wearing overalls and red sneakers. He has curly dark brown hair, with stickers on his face. A speech bubble next to his head with the quote “disabled isn’t a bad word” inside. ] End description.
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thebibliosphere · 2 months ago
I know it's my mast cell disease and my gluten + wheat allergy making my life difficult, but the fact that when I'm trying to find PLASTIC cutting boards, wheat fiber boards keep showing up in my search results sure is an anaphylaxis episode waiting to happen.
Also makes me wonder how many people might be using these trendy eco things and might accidentally kill someone because they didn't know a house guest has a severe wheat allergy/the person with the allergy isn't aware wheat-based cutting boards exist.
And before anyone tries to "well actually" me over them being a health risk--I've had anaphylaxis from biodegradable plates, cutlery, and straws. The risk might be low, but it's not low enough.
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mellosakicc · a day ago
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blind channel tees
for anon. sorry I put the rest of your request off so long. the other will be soon.
one of the swatches i did stitch together myself so yeehaw
base game compatible
m&f - teen thru elder
enabled for random
custom cas thumbnail
download (simfileshare) | download (patreon - free)
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geeses · a month ago
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
Neck brace
Wrist widget
Thumb splint
SI Joint Belt
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)
Saltstick fastchews (orange and watermelon are my favorites)
Salt pills (that don't upset my tummy)
Cell Salts (these help my migraines)
Quercetin (for allergies)
Neti pot
Bug bite thing
Hand warmer
Bed tray table
Toilet seat cushion
Yoga swing (yeehaw cowboy)
Cooling towels
Huge Mason jar pitcher thing (revolutionized my access to water)
Pulse oximeter
*Notice* All of the above are Amazon Affiliate links.
As I am a disabled artist, I do not make much money. As I'm sure you know, it is very expensive to be disabled. These links wont cost you any extra to use, but I will get a small amount of the commission if you buy any of these items within 24 hours of clicking the link. Thank you!!!! (please boost this if you can, thank you, ily.) venmo
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hussyknee · 9 months ago
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autism-affirmations · 7 months ago
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my mental health combined with my collapsing body will not make me want to cry!
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autisticeducator · 7 months ago
For MCAS/MCAD and histamine intolerance:
This is the Swiss Interest Group Histamine Intolerance (SIGHI) ratings for histamine in common foods. Obviously it isn’t a one size fits all list (because each person’s reaction is different and no one can fully agree on what is low histamine).
It doesn’t hurt to start with foods with a zero rating to figure out what you tolerate.
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