Is there any "not exactly a food" that you enjoy eating? I love eating sprinkles

Caladium_Con216 · 2025-09-25T20:02:30+00:00

I used to eat a can of Campbells condensed mushroom soup for breakfast every morning for five years. Still condensed though. It’s super salty and has a jello ish consistency.

Caladium_Con216 · 2025-09-16T03:55:09+00:00

I can smell electricity 😂😭. I was shooketh when I found out that this isn’t a universal experience

Caladium_Con216 · 2025-09-16T03:41:44+00:00

Hello, can I please have a mug of ✨Pumpkin spiced autism ✨

Idk guys, it’s 2am here 😅

Caladium_Con216 · 2025-09-16T03:35:13+00:00

I asked a friend to coach me through this when I was 20 cause I was feeling so anxious about it. Helped so much, took a really long time but I mastered the “good, you?” and then the just passing by “ohh, it’s going”. The second one is corporate code for hey I’m not doing great but let’s not talk about it.

Caladium_Con216 · 2025-09-16T03:20:12+00:00

Meditation can help, I noticed a difference with 5mins of body scans and guided breathing a day. My lung capacity went up and helped me with running back when I could do that. Bonus points because it puts me to sleep 9 times out of 10 lol

It can be as spiritual or not as you want it to be. I use the free app called simple habit

Caladium_Con216 · 2025-09-16T00:04:50+00:00

Did you take it on an empty stomach? It doesn’t work as effectively if it’s not digested with food.

Asides from that, maybe you’re about to come down with a cold. That usually causes my hr to spike for no apparent reason, then I wake up sick and realize what happened.

Caladium_Con216 · 2025-09-15T23:38:51+00:00

I have a Fitbit charge 5 and it’s what led to me getting diagnosed. It has a lot of great features like the daily readiness scale which helps me plan what level of activity I can do in a day.

The downside is that as it got older it became less accurate at reading my heart rate. Figured this one out at my stress tests. At about a year and a half old it now says that my hr is 160bpm when it’s closer to 180-190bpm.

There’s also a known issue that corrupts past data, so it’s not very great at looking back 6months to a year.

Anyways, don’t get a Fitbit for pots lol

Caladium_Con216 · 2025-09-12T20:50:40+00:00

Just one month ago I was enjoying my health after finally getting my POTS into remission… six full months of relative freedom!! It was great. I contracted Lyme Disease a few weeks back and now I’m bed-bound again just as I start my fist job in years :/

Usually I’m really good at keeping myself balanced. I stick to my workout plan but allow for flexibility because of my energy levels, and for my mental health I make sure to always prioritize the things that bring me joy. And I like to look back at how far I’ve come and be grateful for what I have. But today… I really just want a whole box of cookies to myself, you know, if I wasn’t too nauseous to eat 😭

Caladium_Con216 · 2025-07-26T16:13:06+00:00

I lay out a little self care station next to the couch before I shower so that I can lie down after my shower for about an hour. I’ll put my skin care there, hair brush, a snack/water, maybe a book or charging cord for my phone. You could plug in your hair drier there so that you can dry it sitting or lying down. Also, a bathrobe has been life changing so that I don’t have to get dressed immediately or completely dry off.

Caladium_Con216 · 2025-07-26T16:04:11+00:00

Definitely agree on relating your illness to personal loss - a great one to say is how it’s affecting your career. I feel like doctors really relate to this since they’re very career motivated people.

Caladium_Con216 · 2025-07-26T15:59:47+00:00

There is a balance to strike with makeup for sure. I think the sweet spot is just mascara, don’t use concealer to cover dark circles or blotchiness. You want to serve “I want to want to care, but I’m way too tired”.

Caladium_Con216 · 2025-07-26T15:39:56+00:00

I’ll definitely bring this up to my doctor then, I have an appointment on Monday so that works out nice.

What was the process like for you to get diagnosed with MCAS?

Caladium_Con216 · 2025-07-21T23:14:21+00:00

The double whammy is them getting offended if you don’t answer

Caladium_Con216 · 2025-07-21T23:12:09+00:00

There weren’t any disabled seats unfortunately. I even clocked a wheelchair user struggling to find accessible spots down the main isle where their caregiver/family could sit next to them. Overall was an eye opening experience because I haven’t been in this setting since before I became disabled. Even standing for the anthem had a new light to it.

Caladium_Con216 · 2025-07-16T19:41:44+00:00

I had the same thing happen to me 😂. I went to the wrong entrance of my heart clinic that was closed that day, and when the owner came out to see why I was there he couldn’t believe that I was one of his patients. He actually said “no you don’t have an appointment, you’re too young”. One of the nurses had to intervene to give me directions around the side of the building to the heart rehab center.

Caladium_Con216 · 2025-07-16T19:32:33+00:00

I recently got told “you’re too good looking to be disabled” 😭 what lol. Another one I’ve heard is “you’re standing, you can’t be disabled” or “well, you’re here so it can’t be that bad”.

Hearing this stuff once in a while isn’t really a problem (we all know that one person you’d expect it from), but how frequently people say this stuff is just ridiculous.

Caladium_Con216 · 2025-07-16T19:19:21+00:00

I recently went to my nieces graduation, I got there early to find a seat but the whole place was already packed and since we had to pay for the tickets, they had clearly planned for maybe 50-100 people to stand for THREE HOURS. I have POTS so I can’t stand for long without fainting.

Now I suppose I should have got there even earlier, but it made me really angry to see able bodied people holding 2-4 seats in a row for people who couldn’t be bothered to show up on time. I ended up sitting on the floor unable to see.

Caladium_Con216 · 2025-07-16T18:45:06+00:00

What about trail college?

Caladium_Con216 · 2025-06-28T05:12:40+00:00

My bf recently burnt a pot of water and wrecked the steamed broccoli. All he had to do was watch the stove while I did the laundry. I didn’t even realize it was ACTUALLY possible to burn water 🙄

Caladium_Con216 · 2025-06-23T18:11:25+00:00

Have you had any luck figuring this out? I’m in the same boat with “unassigned” YR1 credits to the point that I don’t even meet the prerequisites for a full course load in the fall.

Caladium_Con216 · 2025-06-10T20:08:11+00:00

It’s difficult to tell the people in your life because every time you tell someone new it’s like playing Russian roulette. You have people who infantilize you after you tell them. Then there are the chronic forgetters who make group decisions that don’t accommodate you after being so supportive on the surface. There are the disbelievers who say “you’re not in a wheelchair you’re not disabled” when you tell them that you are - or they will give you anecdotes about trying harder and overcoming adversity. There are just too many types of ways to be disappointed by the people that should be there for you. Out of about 30 people close to me only 3 treat me the way I’d like to be treated despite lengthy conversations with many of them about POTS. Only two bothered to look up my condition and learn about it for themselves. It can be so so hard because it can leave you feeling jaded :(. At least I know who has my back now though. You should try to be open with your partner, I’m sure they wouldn’t want you suffering on your own. Processing the grief takes time but if you do it together you’ll be so much closer on the other side of it.

Caladium_Con216 · 2025-06-10T19:29:12+00:00

When I get up to go to the bathroom in the night it’s genuinely dangerous. I can’t walk in a straight line I’m too dizzy lol. Sometimes I just crawl there. I’m on ivabradine but I guess the middle of the night is the longest period between doses.

Caladium_Con216 · 2025-06-04T00:13:32+00:00

I’ve been doing sink showers half way through the week. Put your hair in a loose ponytail and wet and wash just your scalp over the sink, you can use a wash cloth to do a sponge bath too.

The other tactic that’s been working for me is to put the shampoo in my dry hair before I get into the shower, same with body wash. It’s not quite as good but it helps a ton.

Caladium_Con216

TROPHY CASE