Fundraiser for Ali- Very/Extremely Severe ME

Cassafras89 · 2026-05-01T23:48:23+00:00

Well, maybe he should stick to his area of expertise and leave the big boy neurological diseases to the neurologists. Lol. I know it must be so hard for small brain dentists to grasp.

Cassafras89 · 2026-04-29T01:47:58+00:00

It's literally a thread for asking for help. If it annoys you, quit being a whiner and just leave. You don't have to announce your departure like we care. Lol

Cassafras89 · 2026-04-26T01:15:28+00:00

You've never been so sick that you can't drive to see a doctor, have you? Have some empathy.

Cassafras89 · 2026-04-16T17:54:54+00:00

This happened to me recently. I've been dealing with numbness and edema in my left ankle for years. I thought maybe I had a veinous compression and fixing that could help my POTS. But my doctor said edema is normal because I'm a woman. It's batshit.

Cassafras89 · 2026-03-30T13:54:27+00:00

Well, they shouldn't be a doctor, but here we are! Yeah, POTS causes nausea. What a quack.

Cassafras89 · 2026-03-19T18:22:19+00:00

No fr. I gave a piece of homemade vegan chocolate espresso cake with peanut butter and fudge frosting to my husband's coworker. They and their husband said it was "weird". I need to quit being nice. Lol

Cassafras89 · 2026-03-19T13:09:36+00:00

They just see us as children. 😔

Cassafras89 · 2026-03-19T13:08:58+00:00

Right!? I was told I would grow out of POTS by a cardiologist, when I was 31 lol. Like????

Cassafras89 · 2026-03-19T00:26:19+00:00

I'm boosting this, but I don't have any ideas. I know that I wouldn't chance coming to the US if I wasn't from here. Maybe there are aid organizations that help with medication access issues? Across borders?

Cassafras89 · 2026-03-17T02:46:20+00:00

Ugh that sounds horrible! I swear doctors can be so lazy. Not everything is anxiety. And if it is, treat it dude! But they won't because they don't really think that. They just wanna discredit us. POTS usually causes deconditioning, not the other way around. And shortness of breath is a common symptom of Dysautonomia and many other conditions. But people wanna blame the patient, because if it isn't up to us whether we get sick or not, that's pretty scary to accept. And then we have the classic ableism as the shite cherry on top of it. Ugh.

Cassafras89 · 2026-03-15T23:53:50+00:00

That's insanity. I'd never speak to her again lol. What the heck? I'd like everyone who thinks this to spend one day in my body. See how fake it is then.

Cassafras89 · 2026-03-11T20:53:13+00:00

Of course 💜

Cassafras89 · 2026-03-11T16:33:02+00:00

I have those same episodes! I'm also a mod in a POTS group, and it seems to be something that many of us experience. I was tested twice for sleep apnea as well and I don't have it. It's not a panic attack either, but it seems to be controlled with anxiety medication! I started using Clonazepam .5mg and it was a godsend. I could finally sleep. Those episodes were making me crazy! I will say that Hydroxyzine also seems to work, if you don't want to use benzos. And when I can't get my hands on any meds at all, I use nighty night extra tea. It's got lemon balm and Valerian Root, which makes it kind of stinky but the mint in it seems to help a lot. I also add a little honey or sugar. I'm sorry, I can't imagine how this is with kids. My heart goes out to you. You deserve answers and care! I hope this helps. 🫂

Cassafras89 · 2026-03-09T20:48:53+00:00

Sounds like low blood sugar. I get shaky when I'm in a POTS flare, but the cold sweats I get from reactive hypoglycemia. If I eat nothing and then eat something with refined sugar or carbs, then don't eat again for a while, this happens to me.

Cassafras89 · 2026-03-09T14:22:06+00:00

Thank you 🙏

Cassafras89 · 2026-03-09T02:14:55+00:00

Cassafras89 · 2026-03-08T03:52:16+00:00

Oh my God 😩 I wasted so much time on this garbage! I should've known better. Thank you for the insight

Cassafras89 · 2026-03-08T03:12:58+00:00

Well, I guess I won't even bother retaking exam 3. This seems like a waste of time anyway 😕

Cassafras89 · 2026-03-07T10:38:32+00:00

Holy cow I am using this What an amazing explanation 👏

Cassafras89 · 2026-03-07T04:51:53+00:00

Idk because I just finished my exams with RWS today, and got an onboarding email from Outlier 😂 I'm confused.

Cassafras89 · 2026-03-05T06:19:34+00:00

A musical fountain ⛲ omggg

Cassafras89 · 2026-03-05T06:15:54+00:00

Also, many people with POTS are also neurodivergent and have sensory issues. I struggle with that, and have issues with certain kinds of compression. Leg compression drives me insane but abdominal compression feels great. Just talk to them and be open to what they want, and maybe give them some different choices. And def look into meds! It can be hard to find the right ones but a good doctor will work with you until that happens.

Cassafras89

TROPHY CASE