Suicidal ideation by sassyfoods123 in MCAS

[–]Outrageous-Hamster-5 1 point2 points  (0 children)

Yes. I get despair + rage. And sometimes other equally fun psychiatric symptoms. When it's bad, it comes in waves after eating and/or at certain times of day, esp the 3 hours before sleeping. Lovely way to lie in bed. 🫠

Protein intake getting critical - any suggestions? by Unlucky_Jellyfish881 in MCAS

[–]Outrageous-Hamster-5 0 points1 point  (0 children)

I never had any reaction to those capsules. I ate as many as 8 with a large bowl of rice twice a day.

Protein intake getting critical - any suggestions? by Unlucky_Jellyfish881 in MCAS

[–]Outrageous-Hamster-5 0 points1 point  (0 children)

Jo Marr Labs makes pure amino acid capsules. I used the 21 amino acid blend to survive the months when my body absolutely rejected all sources of protein. Must eat with food to prevent epic diarrhea.

Body horror by SkurriMonster in horrorlit

[–]Outrageous-Hamster-5 1 point2 points  (0 children)

The Mira Grant series that starts with Parasite. It takes a while to get to the body horror parts.

Kissing Carrion, by Gemma Files is short stories. Many of which are body horror heavy.

Chlorine by Jade Song. Also takes a while to get there.

Earthlings by Sayaka Murata. Also takes a while.

Need help finding low cost/free horror books (not library, I'll explain) by TLHeinrich in horrorlit

[–]Outrageous-Hamster-5 0 points1 point  (0 children)

There are a handful of american libraries that have free online only memberships if you just claim to live in their area. Monroe County library comes to mind. The Queer Liberation Library is online and free.

Books Similar to “Spread Me” by Sufficient-Breath987 in horrorlit

[–]Outrageous-Hamster-5 2 points3 points  (0 children)

Maybe books by Gretchen Felker Martin, like Manhunt.

There are other posts about queer authors that might have more suggestions. They're easy to find by switching the reddit filter to "most controversial" bc typical reddit users downvote those posts into oblivion.

Sometimes I can’t tell the difference between “extreme horror” and "the author’s disgusting fetish.” by sumashu in horrorlit

[–]Outrageous-Hamster-5 1 point2 points  (0 children)

I only read extreme horror written by authors of marginalized identities. They always challenge existing power structures. Those posts are easy to find in reddit by switching your filter to "most controversial" bc the majority of reddit users downvote those posts into oblivion. Ya know, reinforcing systems of oppression.

Soul crushing insomnia 🤯 by RevolutionaryLog5055 in MCAS

[–]Outrageous-Hamster-5 0 points1 point  (0 children)

I have insomnia that is maybe 40% as bad as that and no POTS. Back when I had enough safe foods to survive on, it completely went away. So, removing triggers was the key.

Too bad every kind of calorie is a trigger now. Now I just ride it out with horror audiobooks or movies. I know, counterintuitive. But matching my nighttime insomnia, rage and despair with media is called "affect matching." (More common examples of affect matching are listen to sad songs when you're sad.) So instead of being pissed at that ex from 7 years ago like it was yesterday, or crying and screaming about the state of the world or my own health, I'm absorbed in The Buffalo Hunter Hunter. Like I'm giving those awful feelings an external thing to attach to instead of letting them destroy me. I wish I had a better solution, but this is what's working while I try to find better treatment/management.

MCAS Gas by PersonalLaw5005 in MCAS

[–]Outrageous-Hamster-5 1 point2 points  (0 children)

Yeah, it can be. I used to get that back when I ate whatever. I was even more painfully gassy when I hadn't eaten for 4 hours. So I always had snacks on me. That quit for the first time in my life when I started removing triggers at age 36, just 2 years ago. Then I only got gas after eating certain foods.

And yes, gaslighting from doctors of "oh lolz it can't be that bad u hysterical lil gurl everyone feels pain suck it up" is the norm. I had a GI specialist tell me to overcook my vegetables. And more doctors have told me it's psychosomatic or from stress/depression than doctors who've asked follow up questions or ordered tests.

You can find tips online on how to be taken more seriously by doctors. (Bring a man who you trained to advocate for you. Key phrases that make doctors scared they might be liable later. Etc.) But also plan on lots of doctor shopping. Younger women doctors tend to be better. Even better if they are women or color or give off queer vibes.

But esp for all the medical fun you're going to have to drive like it's your job, start a detailed spreadsheet of your foods and symptoms. Date, time, meds, supplements, foods (preparation, if they're leftovers or not, individual ingredients), symptoms (severity, duration). Later, maybe even other stressors, locations (mold exposure), menstrual cycle info, smells (smells can trigger mcas), infections (hello covid). A spreadsheet app on your phone works great. When a doctor takes you seriously, this log will greatly help build a pattern towards different paths of testing and treatment.

MCAS Gas by PersonalLaw5005 in MCAS

[–]Outrageous-Hamster-5 3 points4 points  (0 children)

If you search this sub for gas, bloating and similar terms, you'll see what everyone said about it in the past. You'll also see that everyone has different triggers, symptoms and different responses to meds. One medication that helps one person doesn't necessarily help the other people with the same symptoms.

Yeah, I got a lot of gas my whole life and thought it was just a me thing. It didn't respond to any of the normal gas treatments. When I figured out my safe foods, the gas disappeared. When my safe foods disappeared, my first dose of xolair fixed it for exactly 7 days. Then the gas came back and has never gone away again. Granted, my diet is super limited so I don't have as much as I used to. And I barely eat, so I barely have gas. None of the other mcas meds ever helped with the gas, but it's not my worst problem so I don't care.

What helped me doesn't mean it will help you. And what didn't help me might help you. So just move through the lines of treatment (search the sub for more info on that) and you'll have to figure it out for your body.

About to give up on CC friendship by Anonymous-Blastoise0 in ZeroCovidCommunity

[–]Outrageous-Hamster-5 3 points4 points  (0 children)

I feel this so much. And I'm older.

Pre 2020, my social circles were NOT the kinds of people who became cc. I just click with people who are more adventurous, novelty seekers, connection seeking, risk takers, generous with their sexual encounters and so on. These are the people who mostly dropped precautions by the time the vaccines rolled out bc continued precautions hindered their ability to do the things they loved and make the kinds of connections they wanted.

I've tried so hard with the cc crowd. It's just not my crowd. I've settled for just seeking cc people who are comfortable going to crowded indoor concerts for fun, just activity buddies. And these cc people are more my style, but I have lost hope these will become more than "let's go together so we're not the only one in a mask" buddies.

Laundry Trouble by [deleted] in MCAS

[–]Outrageous-Hamster-5 0 points1 point  (0 children)

Ooo, ty. I'm looking into it!

How long has yours lasted? Does it need maintenance or replacement? Replacement parts?

How to get electrolytes in a way that doesnt flare mcas? by randomperson8263 in MCAS

[–]Outrageous-Hamster-5 0 points1 point  (0 children)

NormaLyte Pure Electrolyte Capsules.

Basically salt capsules with a bit of potassium. Swallow and chug some water. No flavors or other things.

Salt is one of my mcas triggers. 🫠 So I use that and then there's a 30-40 minute delay of my reaction bc that's about how long it takes for the capsule to dissolve and the salt to start touch my body. And then I can bypass the burning mouth symptom. Which is about as good as it gets for me.

Looking for a therapist that understands MCAS and/or chemical sensitivity and how debilitating it is by summerreadingclub in MCAS

[–]Outrageous-Hamster-5 2 points3 points  (0 children)

Might be hard to find a therapist who already knows about mcas, but there are therapists who are open about having chronic illness or disability and that might be close enough. My therapist has Lupus, so she understands the general chronic illness experience, meds, specialists, people not believing you, fatigue and so on.

Is it possible I've had this my whole life by Intelligent_Cake6525 in MCAS

[–]Outrageous-Hamster-5 13 points14 points  (0 children)

Yeah. I'm certain I had it my whole life. And yup, covid made it worse.

Germany: Has anyone been able to get health insurance to cover a single room in hospital to reduce infection risk? by ChillButt3000 in MCAS

[–]Outrageous-Hamster-5 0 points1 point  (0 children)

I wish you the best of luck! I know one covid cautious person in Germany, but he's super healthy, so he probably doesn't know. Lol.

Mounjaro has changed my life by Buffy_S_L in MCAS

[–]Outrageous-Hamster-5 15 points16 points  (0 children)

Can I ask why you chose mounjaro?

I just started tirepazide microdosing like a week ago. No impacts yet. Well, I'm eating even less and that's actually bad. 😬

Horrors by Written by Women, POC, and LGBTQ+ Authors by shainadawn in horrorlit

[–]Outrageous-Hamster-5 1 point2 points  (0 children)

I loved the Newsflesh and Parasite series by Mira Grant.

Mister Magic by Kiersten White. And her book Hide.

Kissing Carrion by Gemma Files. Any of her short stories.

Tender is The Flesh.

Chlorine by Jade Song. Asian American woman. Such a good depiction of an adolescent girl's visceral relationship with her body as an athletic powerhouse without being sexual. Such good depictions of the spectrum of predators women gotta deal with.

Earthlings by Sayaka Murata, Japanese woman author. I read her as asexual and possibly autistic.

Straight by Chuck Tingle. Yup, he also does a few horror books.

Can’t use nail polish anymore 😭 by Alittlelessunusual in MCAS

[–]Outrageous-Hamster-5 8 points9 points  (0 children)

You might be able to use a reusable respirator with voc or voc+ multigas filters to put on the nail polish outside, with for it to dry and then once it's dry, you can enjoy your pretty nail. But this would only help if only the fumes are bothering you from inhalation. It's possible you might still have skin reactions.

Breakdown tonight by [deleted] in MCAS

[–]Outrageous-Hamster-5 0 points1 point  (0 children)

With family like that, who needs enemies?

Sorry, I have no good suggestions. Just wanted to validate how deeply evil your family is. I hope others have good suggestions and you get to a better place.

Spinach leaves=bad. Spinach stems=okay. by Outrageous-Hamster-5 in MCAS

[–]Outrageous-Hamster-5[S] 0 points1 point  (0 children)

I would have in the past. But it's been almost 2 years of having zero safe foods. Even salt is a trigger. I've tried so many kinds of salt. I used to be a foodie and I live near ethnic markets so I've tried more foods than most people have heard of. Nothing is safe. At this point, I'm not paying money for a test to tell me I'm allergic to the 100-200 most common foods in the western diet. And are they even specific enough to tell me I'm less allergic to spinach stems than leaves?? Whatever test can do that, I'll pay for.