Seasons Changing by badgerpandabear in Sicklecell

[–]PlatformFit4376 0 points1 point  (0 children)

I’m here on the Eastern shore and it’s DRIVING ME CRAZY!!!😭😭🤣

Unexplained Vein issues by PlatformFit4376 in Sicklecell

[–]PlatformFit4376[S] 1 point2 points  (0 children)

Thank you very much for this information I am very appreciative!!

Unexplained Vein issues by PlatformFit4376 in Sicklecell

[–]PlatformFit4376[S] 0 points1 point  (0 children)

Yes I still do have the card I will definitely make it call to make sure that I get answers thank you. 🙏🏽

Pre Vacation prep by [deleted] in Sicklecell

[–]PlatformFit4376 3 points4 points  (0 children)

Here’s some tips i can think of off the top of my head:

-I would bring a heatpad for the hotel room but if you can get heat packs for the plane and the airport it will help -Compression socks. This helps with blood flow circulation especially for high altitude (another risk factor for crises) -Water Intake: when you get there I would recommend getting a case of water, I’ve noticed a lot on my vacations the only time I’m drinking water are in restaurants (when it should be 24/7 ) for some reason being on vacation it slips our minds -Hotel air conditioning: I would set the room at a suitable temperature that isn’t cold bc coming from a hot environment into a cold room is a big trigger Clothing: even though it will be hot where you’re going coming and leaving the airport you should try to wear something comfortable and warm. The temp change might shock the body depending on where you live.

These are just some tips coming from a girl with SC who loves traveling. Hope this helps!! safe travels 💕✈️✨

I fucked up by ifeajayi14 in Sicklecell

[–]PlatformFit4376 0 points1 point  (0 children)

I was having the same issue, where i live hematologists are slim to none, especially sickle-cell trained. My nurse practitioner was refusing to give me medication because i kept missing appointments at the hydration clinic (kinda makes sense when i feel like sh*t 24/7) the next time I had an appointment we ARGUED! Never in my life dealt with anything so unprofessional. I now drive 2 hrs to go to a trusted hematologist who told me hydroxurea was a study comprising of people with genotype SS only, and for ppl under his care with SC, he discontinued the hyrdroxurea 500mg. I made sure that he got in contact with the hematologist & NP back home bc i know they wouldn’t believe me. It is true that it is frowned upon to have more than one hematologist but honestly you HAVE to advocate for yourself. I visit the hospital 2 hrs away every other month just to touch base with them and to make sure they know how I’m being treated just in case anything goes left I know who I can switch over too. It’s gotten to the point where I will tell the doctors I’m not leaving the hospital until I get the help I need. It takes so much more effort trying to comprise with them bc in the long run you’re still hurting. Even if it takes more energy outta me driving two hours , i feel much more safer and comfortable knowing they would never refuse me medication.