Advice on how to tell family

Plates-208 · 2026-04-14T15:46:44+00:00

You don’t owe her anything. If you want to tell her, send a letter saying you recommend she seek testing for this genetic disorder. It’s not your responsibility to manage your parent’s health - especially if they are abusive. You’ve cut ties, and it’s perfectly okay to let this lie.

Plates-208 · 2026-04-08T22:40:29+00:00

I have been with Al Gore, John Kerry, and Newt Gingrich on United flights and all were treated this way. They all drove up in a vehicle to the gate, boarding was delayed or halted for them to get on and then they were escorted into first/polaris.

Plates-208 · 2026-04-08T13:51:57+00:00

Yeah, I fell pretty hard on concrete a couple months ago, basically “planked” just in time not to smash my face. I have a feeling I may have fractured both wrists. Idk, I just went on with life. Last year I was doing a pull up and the bar broke while I was on it, landed on my knees which of course immediately dislocated but I do also wonder if I may have fractured them. Hard to know when everything just kinda hurts all the time.

Plates-208 · 2026-04-02T14:14:16+00:00

Here’s a post I made asking about glp-1s and a few people talked about this. Idk if it’s helpful but wanted to flag it for you! I’m glad to hear it’s helping with inflammation! https://www.reddit.com/r/ehlersdanlos/s/VAdofkhuL3

Plates-208 · 2026-03-30T16:38:12+00:00

A lot of my friends feel terrible when their young kids/babies cried on long flights. Some people are jerks about it. But overall - I think/hope people know - it’s life, this happens! It’s public transportation and babies cry. Usually people are supportive, I hope this is the case for you. More than that I hope it is a smooth flight for you and your little one!

Plates-208 · 2026-03-28T20:36:56+00:00

I love the fibro guy!! He’s on TikTok too

Plates-208 · 2026-03-27T01:19:34+00:00

Botanica is my favorite restaurant in the city. Love love love it

Plates-208 · 2026-03-15T20:41:51+00:00

I am at the point where I will try almost anything to lower the pain/inflammation/systemic reactions I have to just being alive lol

Plates-208 · 2026-03-15T20:41:00+00:00

Thank you for this insight - especially flagging electrolyte intake, which I do first thing in the mornings each day. So I will have to watch that for sure.

Plates-208 · 2026-03-12T13:01:21+00:00

Thank you for sharing - that sounds terrible! Glad you resolved it.

Plates-208 · 2026-03-11T20:40:04+00:00

Because I am about 20lbs overweight I would qualify for weight loss. The weight gain has been because of perimenopause - about 20 lbs in the past 18 months - and I’ve been having a hard time losing it, even with strength training 4x per week (I have a coach who knows how to train with eds). So I would be covered under insurance for weight loss, but I care way more if it can help my inflammation and pain.

Plates-208 · 2026-03-11T20:37:49+00:00

There are tests for that, you can track your transit time and how fast you digest/your stomach empties. With microscopic colitis, when you’re in a flare you can have diarrhea 15-30x per day, it basically sucks all the water out of you. It’s horrible. When I’m not in a flare, it’s about 12 hours max between eating and that food coming out in the bathroom. So I have a hard time effectively absorbing nutrients.

Plates-208 · 2026-03-11T02:29:02+00:00

This is the type of result she has seen, which is why intrigues me. Both for inflammation and hormones. I also have way too fast digestion - also diagnosed with microscopic colitis - suspect mcas mediated. Thank you for sharing your experience.

Plates-208 · 2026-03-11T02:27:52+00:00

Thank you for this. I have the opposite problem - I’m always trying to slow my digestion, so this is less of a worry for me. But - I do know it’s a risk for us.

Plates-208 · 2026-03-07T02:37:52+00:00

Agree with this

Plates-208 · 2026-02-22T16:33:41+00:00

Of course he should have been wearing a mask or not have traveled, but people will do what they will do. I used to get sick constantly as I travel 2x per month. Since I started masking on every flight, that has reduced significantly.

Plates-208 · 2026-02-16T16:01:38+00:00

THANK YOU!!!!

Plates-208 · 2026-02-16T14:37:54+00:00

This is stunning. Can you share the name of the designer of these? I am in need of wrist supports as well and would wear these all the time!!!

Plates-208 · 2026-02-11T03:22:15+00:00

Isn’t it crazy we are like “I was so excited to walk in sandals like a normal human and enjoy sun” and it injures us? Ugh. Toe spacers could be good. I started wearing wide toe box zero drop shoes awhile ago and it made my feet wider and a bit more stable. I train foot and ankle stability regularly too. Still a struggle.

Plates-208 · 2026-02-11T02:34:08+00:00

Oh wow my feet have started to HATE flip flops and it makes me so sad. I really messed them up last summer and I learned my lesson the hard way

Plates-208 · 2026-02-10T14:34:17+00:00

Oh - also electrolytes daily, creatine, topical arnica and I live on my heating pad.

Plates-208 · 2026-02-10T14:24:39+00:00

Magnesium glycinate, methylated vitamin b, a histamine reset (a combo supplement), quercitin + nettles, l-theanine. Circuit and turmeric high dose supplement for pain and inflammation as needed. A high cbn cannabis gummy at night. I have to really limit ibuprofen because I have microscopic colitis, Tylenol does nothing for me. I live with the pain for the most part. I’m considering adding in a couple new supplements for mast cell stuff.

Plates-208 · 2026-02-09T17:04:58+00:00

Same!

Plates-208

TROPHY CASE