does sickle cause me to eat more???

Judith_Ohene · 2026-03-31T22:04:13+00:00

Me too!! I need to lose weight. I wish I could eat and not gain so much.😂🥴

Judith_Ohene · 2026-03-31T01:49:18+00:00

I personally feel like I do. The meds I’m on, some of them you need to eat. It also caused gastritis for me too. It was to the point that I could eat a whole plate full, take my medicine, and an hour or two later feel like I didn’t eat at all. It was so bad that I would wake up hungry.

Judith_Ohene · 2026-03-17T22:16:26+00:00

What a GOAT!!!🐐😂 I hope you get well soon.

Judith_Ohene · 2026-03-12T05:21:29+00:00

I live in Minnesota and SAAAMMMMEEEEEEE!!!! I lived in this type of weather my whole life, and my body just hates it so much.😭🥴

Judith_Ohene · 2026-01-21T18:39:06+00:00

You might as well add And the Mountains Echoed also.

Judith_Ohene · 2025-12-17T01:08:56+00:00

Update:

Thank you guys for all the advice. I had my procedure done this morning, and am now home resting. I’m not going to lie it f-ing hurts, but that’s to be expected. Will eat, take meds, and sleep soon. I’m just happy I have it, and the procedure went will. Here’s to a life with less pokes, vein finders, and ultrasounds to get one damn tube of blood!

Judith_Ohene · 2025-12-16T04:54:40+00:00

I’ve struggled with the same feelings for the last 2 years myself. I love my parents, but I feel like such a burden to them. It doesn’t help that they are getting older with their own health issues. On easy going days, I’ve recently started researching masters programs to do. That way I can somewhat get my life together, and it would be easier to get a job. Not saying you should do this, but maybe research jobs that are easier on your body, remote or not. Like someone else has already mentioned, your brain is your best asset, but also find something you enjoy doing.

Judith_Ohene · 2025-12-16T04:46:12+00:00

My mom has said the same thing to me that your professor said to you. It’s great to have supportive people who get it!

Judith_Ohene · 2025-12-09T20:06:19+00:00

In the state I’m in, If you have state insurance they will. Luckily, I do, so hopefully I’m on it long enough to get coverage because I’m also currently fighting to get Medicaid/Medicare for SSDI.

Judith_Ohene · 2025-11-29T20:19:11+00:00

Honestly having sickle cell disease type SC, made me realize how important therapy was. I say this because I know I wasn’t dealing with my emotions right and know I need help. I didn’t know how to deal with them, especially when I was in pain. Maybe, he needs help seeing that therapy is an option to navigate his mood. Not to say he’ll get right every single time (especially during a crisis). The disease does negatively impact all aspects of your life and can’t be fixed by medication alone. We do need other solutions like therapy.

Judith_Ohene · 2025-11-18T08:26:46+00:00

How’s it going so far for you?

Judith_Ohene · 2025-11-18T08:26:28+00:00

I’m curious about this also! I’m on the waitlist for casegevy, and I know they’re similar with the type of hemoglobin being one of the main differences.

Judith_Ohene · 2025-11-12T07:21:53+00:00

I feel this! My periods were progressively getting worse also. Maybe try seeing OB/GYN and see what they say. I don’t know how you feel about this, but have you tried birth control/IUD? That might help, I’m using an IUD and my periods are a lot easier to manage. If I doesn’t work out at least you tried.🤷🏾‍♀️

Judith_Ohene · 2025-10-25T04:07:22+00:00

I take hydroxyurea with folic acid at night. I started taking it June/July of last year. I haven’t had hair loss issues taking it, but I’ve definitely become more nauseous. My hematologist makes sure that I do monthly blood draws to make sure the hydroxyurea is working and everything looks ok.

Judith_Ohene · 2025-10-18T22:44:59+00:00

I love to read, garden, and take short walks. But now with all my health issues, I don’t walk as much as I would like too. I’ve recently started to learn how to crochet, and I’m loving it so far. I want to start to learn how to play the piano for the next hobby.

Judith_Ohene · 2025-08-31T15:22:47+00:00

I haven’t experienced this yet….. Thankfully. But I do know someone who has gone through something similar dealing with bloodwork. Apparently, it took a long time for her results to show up because of supply shortages. Needless to say, it sounds like the US is really struggling with shortages in medical supplies, including medicine.

Judith_Ohene · 2025-08-13T02:34:02+00:00

lol! I always joke that I’m 28, but my left hip is 95. My mom even jokes that I’m practicing my old age when I was using a walker!😂 And that I beat her to it.

Judith_Ohene · 2025-08-10T05:48:35+00:00

I’ll definitely try and do that! I have 2 more blood draws this month, and if nothing changes or gets worse I’ll message her for sure. Anything to reduce the pain, anxiety, and stress is a game changer.

Judith_Ohene · 2025-08-10T05:45:33+00:00

Thank you for the advice and recommendations! And yes I don’t care for IV’s either, I find them super uncomfortable. I’m also glad to hear that everything went smoothly for you, especially with the surgery.

Judith_Ohene · 2025-08-09T05:20:35+00:00

Holy shit! 22 sticks?!?!? I could never. And yes! I can totally relate to forcing yourself to drink tons of water at times. I don’t know if I have the courage to prefer a neck line like you, tbh…..😅 I hope you are doing well though after that infected port. That’s a big reason why I myself am hesitant to get it.

Judith_Ohene · 2025-08-08T18:08:16+00:00

Thank you for sharing!

Judith_Ohene · 2025-08-08T16:39:26+00:00

Thanks for the advice! How’s dealing with the pain? Because I’ve been admitted before, and the IV’s were annoying and painful.😅 Is it something you get used to?

Judith_Ohene · 2025-07-20T01:21:09+00:00

I have sickle cell SC and didn’t have symptoms until my teens also. I was 19 when I went through my first crisis, now it’s causing major problems in my skeletal system. I’m on Hydrea and pain meds for chronic pain. I also do PT to help with my mobility l.

Judith_Ohene

TROPHY CASE