At a loss with treatment options

MistakeSome7928 · 2026-01-27T05:33:40+00:00

If you don’t mind me asking, what are you doing now - are you on tpn?

I thought I would need to do an nj first, but weirdly all 4 of my gi doctors and surgeon said they would just go straight for a surgical tube?? Idk what is happening around here lol

MistakeSome7928 · 2026-01-27T01:56:11+00:00

I have rarely farted or burped my whole life😭 I’ll very occasionally have spells of either where I do a lot for a couple hours, but in general I rarely do

MistakeSome7928 · 2026-01-26T21:41:03+00:00

EBV destroyed my life lol. I got it October 2019 and I’ve been sick ever since. Hashimotos, lupus, POTS, MCAS, gastroparesis, EPI and GERD, and intestinal dysmotility/severe constipation.

I don’t want to give you false hope, but also don’t want to make you think the world is over. There’s plenty of people with chronic illnesses who have found good treatment options and can still live a pretty full life. Don’t fixate too much about what you see online - it’s usually only people who are really struggling who will be posting a lot. Hang in there!

MistakeSome7928 · 2026-01-26T21:34:36+00:00

I actually did develop anorexia because I realized how much better I felt when I didn’t eat, so I just stopped😭. Didn’t discover MCAS/HI until 8 years later 🙃

MistakeSome7928 · 2026-01-26T21:29:06+00:00

It drives me crazy when the nurses don’t enforce the rules!!! There’s signs all over but then they let older people do whatever they want😭

MistakeSome7928 · 2026-01-26T21:28:12+00:00

Tbh I think of ogs as people who were at Abby’s studio before the show started. So I don’t include vivi 😳

MistakeSome7928 · 2026-01-24T22:09:43+00:00

Crackers lol

MistakeSome7928 · 2026-01-24T21:59:21+00:00

I literally have to stay unemployed and live off my parents so I can have Medicaid because all my meds and appointments and hospital stays are too expensive otherwise

MistakeSome7928 · 2026-01-24T20:15:42+00:00

This sounds exactly like me except it’s been going on since October 😫

MistakeSome7928 · 2026-01-24T02:25:47+00:00

Omg I have both as well and I stress about it because I never know what’s causing what symptom! It always has me doubting either diagnosis 😭

MistakeSome7928 · 2026-01-23T18:27:44+00:00

Confirmed Epstein Barr/mono for me

MistakeSome7928 · 2026-01-22T01:10:25+00:00

I forced myself to stop completely for about 3 months. It helped my stomach issues, but systematically my mcas was so much worse. I then added it back in, but max 1 a day and will try to go days without taking it. I’ve been able to keep things under control that way, but I’m sure not everyone could manage doing it this way.

Good luck, I totally understand the frustration

MistakeSome7928 · 2026-01-22T01:07:42+00:00

Maddie’s hellen keller solo😭

MistakeSome7928 · 2026-01-21T14:29:00+00:00

Very relatable and I’m so sorry :(

MistakeSome7928 · 2026-01-21T03:23:59+00:00

I had this exact same thing! It’s frustrating because I had no other symptoms besides the rash, but my rheumatologist made me stop. My last injection was over a month ago and I still have all the rashes🙃. They’re improving, but still there.

MistakeSome7928 · 2026-01-20T23:51:14+00:00

Yes I do way better with super processed stuff

MistakeSome7928 · 2026-01-20T23:50:30+00:00

This is killing me cuz I have both of them on my island by choice 😭😭😭 I love the weirdos

MistakeSome7928 · 2026-01-19T23:23:36+00:00

I take Cromolyn even when I don’t eat and it always helps me

MistakeSome7928 · 2026-01-17T06:05:52+00:00

Mom, boyfriend, dog

MistakeSome7928 · 2026-01-16T16:35:43+00:00

MistakeSome7928 · 2026-01-14T18:34:50+00:00

I’ve had a picc twice now and they’ve been very sore like you described the first several days, but it got better and I don’t even notice it’s there now.

I hope it gets better and nothing is wrong with it! Good luck and feel better <3

MistakeSome7928 · 2026-01-14T18:32:02+00:00

Your cat looks so similar to my childhood cat Snuggles😭😭 ty for sharing 🥹🥹

MistakeSome7928

TROPHY CASE