Having sickle cell anemia.

Having a period.

Having ENOUGH sleep and is still tired.

Having interviews to go to , but in pain and physically exhausted and fragile.

I woke up to my period and sat on the toilet and cried bc I’m physically and emotionally exhausted AND physically in pain. I’m physically weak right now I’m all of the above UNTIL I get my blood transfusion WHICH I’m due for TODAY thank god ❤️😩 These appts are rough for me so I never want to go but still do ofc.

It’s rough bc I’m always Having to get stuck multiple times bc my veins are literally no good. They’ve always been crappy veins, but as I got older they’ve gotten muuuch worse. So I get stuck (if I’m lucky I won’t get stuck past 3 times) multiple times and then I end up falling into a pain crisis because of it for multiple reasons.

Then, They take an entire 530/600 bag of blood from me first, then I get 2 bags placed back inside me.

The thing is.. say I’m getting a transfusion ..when I’m getting transfused and I do so happen to fall into a crisis … I THEN HAVE TO MAKE A DECISION. A decision if 1. If I want to treat my pain crisis or 2. continue/finish my transfusion.

NOW .. If I want to treat my pain (which is a pain one cannot describe 🤦🏽‍♀️ the best I can describe it is getting hit back to back by a semi truck w needles poking you repeatedly and like blood pressure cuffs are all over your body pumping up but not inflating. Idk , I feel my bones and they hurt unbearably excruciatingly like they’re exposed to air. 😩 )

Crisis .. this/these PAINS that come RANDOMLY which can last minutes hours or DAYS.

Back to what I was saying .. when I’m getting my transfusion and I happen to break out into a crisis .. i have to make THISSS 2 decisions I stated above; so if I want to get it treated.. then I HAVE TO STOP my transfusion and go to the ER to get treated, AND… I CANNOT go back nd resume my transfusion after Ive done went and treated my pain crisis.

I’D LITERALLY have to wait till next month’s appointment. And I feel that’s just a sick mindset to go about handling thing specific thing w sc patients. And I go to a cancer center to get tested which is at a hospital , the hospital I’ve been going to since I was a toddle. I just feel it is sickening. Like what ? I need my blood and I need to STOP this pain crisis .. 🤷🏽‍♀️ what’s so hard and complicated !? Ya know !

So if I transfer my doc to Johns Hopkins.. (they have a separate center specifically for us sickle cell patients which is heavenly ♥️ ..but say I get transfused at Johns Hopkins sickle cell center .. and I do end up getting a pain crisis while getting transfused there right… with them all they’d do is treat me WHILE getting my transfusion ! 😱 ( 👈🏼 right lol that’s what I said when I discovered that the first time I went.)

All they’d do is get to know me and my crisis and my treatment process as in what medicine do I take / is best for me for treatment to my pain crisis first. Then they’d go on an give me the medicine.. monitor me .. they’ll ask about my well-being see if I need more and and if I do then they’d give me more .. the process repeats for the third and final time , if I need a third dose then that’s when I’d automatically have to get admitted to be monitored just for the night.

Yall .. when I tell u I was IN LOVE .. i was frekin in love. I loved everything about the trip to John Hopkins sickle cell center.

It’s LOVE I feel well cared for well respected well heard well understood the few time when I went there.

MEANWHILE university of md is absolutely shitty ! Shitty with how they treat their sickle cell patients! And the way they go about handling us when we have pain !

It’s a lot having sickle cell it really is and I’m beyond over it. 🤦🏽‍♀️

Excuse me I was definitely all over the place w this one and Thank you for reading all of it ! 🫶🏼😇 I was just coming on here to rant while my pain medicine kicked in .. 🤦🏽‍♀️😭 before I go to my blood transfusion appt. Idw fall into pain and not be able to get my blood THAT I NEED bc I rather treat my unbearable pain crisis ! “”” 🫠🙄🥱🙄😒

Sickle cell support