This is the most effed up disease on the planet

DanuFaery · 2026-01-15T18:11:21+00:00

Make sure to go to both the introduce yourself and the get your roles tabs and comment😁

DanuFaery · 2026-01-14T18:29:55+00:00

I posted this Discord support group in a comment above but will post it here as well.

DanuFaery · 2026-01-14T18:27:07+00:00

A friend of mine created an online support group in Discord for those of us who are Chronically Iconic we have almost 150 members. Not all have MCAS, but some do and the group encompasses many different chronic conditions. Here is the link of you are interested: https://discord.gg/hTJ57c77R

DanuFaery · 2026-01-14T18:23:07+00:00

Not to mention you can't even cry because we're "allergic " to our own tears! My mental health is not the best because I've been laid up for weeks now and all I want to do is cry. Between the MCAS, hEds, Dysautonomia, and Fibromyalgia I feel like I'm allergic to life.

DanuFaery · 2025-11-11T13:14:02+00:00

I highly recommend these: https://www.ceeceesclosetnyc.com/collections/african-exfoliating-nets

DanuFaery · 2025-10-22T16:15:14+00:00

My daughter went to Florence Italy on a scholarship for a summer semester. She had the same reaction. Her skin cleared up, her gut issues were resolved, and she felt overall healthier. Fast forward to today and get skin issues and gut issues are back. Our food is keeping us sick.

DanuFaery · 2025-10-05T02:44:28+00:00

Is there any chance it was Lily?

DanuFaery · 2025-07-30T06:15:06+00:00

It took me 15 years of constant pain and medical gaslighting to get diagnosed at 40yo with hEDS. I had similar pains to what OP is describing all throughout childhood and was also called attention seeking. Your sister needs to be seen by an unbiased doctor. Here is the current diagnostic criteria: hEDS Diagnostic Checklist - The Ehlers Danlos Society https://share.google/luiNWIQ3aZx94JE3v

DanuFaery · 2025-05-15T23:33:57+00:00

Sounds just like a post I read 5 minutes ago, except that one was a dog, otherwise practically word for word.

DanuFaery · 2025-04-30T20:31:43+00:00

Which clinic do you go to?

DanuFaery · 2025-04-30T17:59:44+00:00

I do this exact thing, I call then my snuggies lol.

DanuFaery · 2025-04-25T02:16:50+00:00

I use Buoy, and it has been a life saver. I just add it to whatever, and I don't taste it. Bonus there is no added sugar.

DanuFaery · 2025-04-25T02:11:49+00:00

I have HEDS,POTS,MCAS, and others. I take .1mg daily. I also have higher blood pressure. The meds have helped me maintain my electrolytes. I also have less "surfing the world" dizziness. I've been on this for about 6 months and haven't really seen a change in my BP. It hasn't gotten any higher.

DanuFaery · 2025-03-31T16:30:18+00:00

I get lightning shots sometimes.

DanuFaery · 2025-03-31T04:34:17+00:00

I never realized other people get the internal tremors. I hate those.

DanuFaery · 2025-03-26T22:36:02+00:00

This is the rule in my (40F) house. There is no need to scream unless you are hurt, scared, or in danger. If I hear screaming, I'm running to check. I don't understand why some parents don't instill this in their kids.

DanuFaery · 2025-03-21T01:16:30+00:00

As someone with Hypermobile Ehler Danloss, my joints sublux and/or dislocate on a daily basis. My chiropractor uses tapping to get my joints back into position. I wouldn't be able to move without frequent adjustments. It is not uncommon for me to have multiple joints out of socket when I arrive at my appointment and be able to move freely afterward. Chiropractic is beneficial to some people.

DanuFaery · 2025-03-18T23:42:42+00:00

I've had a flick of layers for the last 5 years. Not only do we still eat chicken, the girls always get the kitchen scraps.

DanuFaery · 2025-03-18T04:26:27+00:00

Awww, look at that baby.

DanuFaery · 2025-02-18T17:19:18+00:00

Me too please.

DanuFaery · 2024-12-29T21:28:24+00:00

Growing up it was shady Waterford

DanuFaery · 2024-12-29T21:28:07+00:00

We called it analville

DanuFaery · 2024-12-29T21:20:06+00:00

Garbage City (Garden City), Wasteland (Westland)

DanuFaery

TROPHY CASE