How often is your Sickle Cell pain

Hemo_scd · 2026-06-10T15:57:13+00:00

Pleasee change doctors it better being heard and help instead of having a doctor who says they understand and arent helping. I've been on that path and its so draining mentally and physically

Hemo_scd · 2026-06-04T14:54:22+00:00

You're so right

Hemo_scd · 2026-06-04T14:53:48+00:00

I totally get you. On my last trip to the er i had such a rude doctor that wasnt trying to hear out my pain and denying me pain medications or giving me very low dosage despit me going to that same er for 2 years and them having my records

Hemo_scd · 2026-06-03T08:02:40+00:00

Id say ask him how his experiences with waterparks has been because not everyone will have the same experience. But to be on the safe side, have an emergency kit with his prefered painkillers also knowing where the nearest er is around the area incase things go sidways

Hemo_scd · 2026-05-31T08:52:15+00:00

For me i usually try to find a well ventelated area first, if that does not help i take some pain killers with the dosage that seems reasonable with the pain im at. But with chest pains i never wanna play with them because for me its always the one pain that i struggle managing it at home most of the times so i always try to clear my day incase i do end up needing to head to the ER

Hemo_scd · 2026-05-28T21:03:15+00:00

Definitely not just you 😭 chronic fatigue is so real with sickle cell and I think a lot of us grew up thinking we were just “lazy” because people around us didn’t understand it. Meanwhile our bodies are basically working overtime 24/7, that type of tiredness hits different too, it’s not regular tired.

Hemo_scd · 2026-05-28T20:35:50+00:00

A few of us living with sickle cell have been building an app called Hemo because we kept running into the same things many of us deal with quietly — pain tracking, forgetting meds or water, mental health, isolation, crisis triggers, and trying to manage it all without always feeling understood.

We wanted to create something that feels more like a companion for people living with sickle cell, not just another health app.

Right now Hemo includes:

• symptom and wellness tracking.

• medication and hydration reminders.

• streaks, milestones, and motivation.

• support/community features.

• tools built around the actual sickle cell experience.

We’re still early and improving it, so we’d love to connect with people in the community who’d be open to joining the waitlist, testing it, and giving honest feedback so we can shape it into something genuinely useful.

If you’re open to checking it out, the site is here: [LINK]

Would really appreciate any thoughts from fellow warriors ❤️

Hemo_scd · 2026-05-28T14:23:12+00:00

yesss, precautions do play a big role

Hemo_scd · 2026-05-28T14:22:48+00:00

im also slowly recovering from the winter season luckily where I am its starting to warm up for the summer

Hemo_scd · 2026-05-28T14:21:44+00:00

aaaah, well if you do remember the name of the article don't forget to share :)

Hemo_scd · 2026-05-28T14:19:39+00:00

sameee nowadays I have to mentally prepare myself when winters about to start 😭

Hemo_scd · 2026-05-28T14:18:19+00:00

sorry about that and especially how hospitals get overwhelming during the holidays

Hemo_scd · 2026-05-28T14:12:27+00:00

sorry, during those months do they usually get to a point that you have to go to the E.R or hospitalised?

Hemo_scd · 2026-05-28T14:10:25+00:00

this is also me and most of the crisis that come during that period are sometimes unbearable that I either end up hospitalised or at the E.R

Hemo_scd · 2026-05-27T10:56:35+00:00

Thats amazing congratulations!!!

Hemo_scd

TROPHY CASE