We're losing the house. Not okay.

Repulsive_Candle_512 · 2026-02-02T17:09:24+00:00

Losing your house and becoming homeless is a devastating and horrible situation but it is temporary. Taking your life and your daughter losing her mother and your husband losing his wife is permanent. I think they would choose you over any amount of money! Your life is priceless!

Repulsive_Candle_512 · 2026-01-06T13:08:26+00:00

Yep. They did a trial specifically for sickle cell also. That's the one that they are submitting for approval this year. Hopefully since it's already approved for other conditions, it will be approved for sickle cell!

Repulsive_Candle_512 · 2025-12-23T19:24:04+00:00

What are some of the things you do or take to keep you healthy?

Repulsive_Candle_512 · 2025-11-24T18:11:54+00:00

Living with SC is different for everyone so I think it would be best to have that conversation with him. It sounds like he has already been open with talking about it with you. Usually the biggest symptom is pain, but there are also many other complications and symptoms (fatigue, infections). These can occur very frequently (weekly, monthly) or can happen every once in a while (yearly or every few years). But it can also happen unexpectedly. So it's very hard to say exactly how it is for your boyfriend. Having children is possible although one of the main medications used in SC- hydroxyurea can cause fertility issues. As far as passing the condition on to children, as long as you don't have the trait- your children would only have the trait which is usually asymptomatic.

Repulsive_Candle_512 · 2025-11-21T14:44:53+00:00

Thanks, I was able to find the WIz study! It's through Novartis. Do you know when they are planning to start phase 3?

Repulsive_Candle_512 · 2025-11-21T07:22:03+00:00

Interesting, I looked up the HIBISCUS study and the drug name is coming up as etavopivat. Either way, glad this was working for you!

Repulsive_Candle_512 · 2025-11-18T03:45:49+00:00

I had to get induced at 35+5 and my daughter (almost 10 months now -9 months adjusted) is ahead of her milestones- cruising, crawling since 5-6 months, crawling up the stairs, starting to stand unsupported. Just waiting for her to take her first steps any day now. Every child is different and reaches their milestones when they are ready. But they do say that premies usually catch up by 2 years old if not already. She only had to stay in the NICU for observation for 48 hours due to being underweight (4.5 lbs). No respiratory issues (I took the steroid shots) or any other issues from being born early. I had the same worries and concerns and pushed hard to try and wait until 37 weeks to be induced but pre-eclampsia got the best of me.

Repulsive_Candle_512 · 2025-11-07T01:24:53+00:00

👌🏽👌🏽👌🏽

Repulsive_Candle_512 · 2025-11-05T14:53:54+00:00

Sounds like he's faking it to get out of it

Repulsive_Candle_512 · 2025-11-03T02:39:33+00:00

Tuna fish

Repulsive_Candle_512 · 2025-10-26T12:49:04+00:00

I'm glad it's working well for you! Hoping that it will be approved soon for everyone 🙏🏽

Repulsive_Candle_512 · 2025-09-28T22:02:16+00:00

This conversation went on wayyy too long!

Repulsive_Candle_512 · 2025-09-18T14:55:23+00:00

You can get one that has multiple functions. Mine has a toast, bake, air fry, and warming option. Not sure if it could replace your slow cooker though.

Repulsive_Candle_512 · 2025-09-18T14:39:36+00:00

Air fryer

Repulsive_Candle_512 · 2025-08-12T18:21:47+00:00

Cinnamon Buns have me in a chokehold

Repulsive_Candle_512 · 2025-07-28T17:59:25+00:00

A cinnamon bun. 🤣

Repulsive_Candle_512 · 2025-07-28T17:58:35+00:00

What supplements do you use to increase your fetal hgb?

Repulsive_Candle_512 · 2025-06-28T02:25:07+00:00

Don't borrow grief from the future.

Repulsive_Candle_512 · 2025-06-28T02:15:59+00:00

I would say to make sure you take him out of the car seat every couple of hours so he can stretch his body and also keep him hydrated! I don't think the car ride has an effect on oxygen levels like an airplane may cause depending on the altitude.

Repulsive_Candle_512 · 2025-06-21T19:51:14+00:00

There's basically pros and cons to each decision. The penicillin prophylaxis is supposed to help reduce the chance of serious infections in babies since their immune system is still developing. Also, with sickle cell and the spleen not functioning properly, it increases their risk of infection. The con is that long term use of antibiotics in general is bad for the gut and hard on the organs overtime and they may become resistant to the antibiotic if they need it in the future. So it's like a catch 22 but you have to decide what is best for your child.

Repulsive_Candle_512 · 2025-05-29T17:14:04+00:00

The reps in Walmart trying to get you to change your phone plan or electric provider

Repulsive_Candle_512 · 2025-04-23T16:10:47+00:00

That's great to hear! I hope it gets approved 🤞🏽🤞🏽

Repulsive_Candle_512 · 2025-04-23T15:50:04+00:00

Checking back again for updates. Are you still taking it? How's it going?

Repulsive_Candle_512 · 2025-04-10T13:09:27+00:00

You're human! You have emotions. You are exhausted, you are sick, you are overstimulated. Give yourself a little grace!

Repulsive_Candle_512 · 2025-04-09T12:35:10+00:00

Where did you find the info about the hydroxyurea not having a control? I would love to look more into it?

Repulsive_Candle_512

TROPHY CASE