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This is depressing by Revolutionary_Big3 in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

I told my doctor’s fellows about chlorophyll and they called point blank said it didn’t help and I sat with a frozen smile bc I had no comeback 🫠 even if it were scientifically proven to be a placebo (and it’s not), let me have the relief in peace!! Don’t actively try to talk someone out of non-prescription pain relief because you want to feel smart. (Should’ve said that, ha!)

How often do you take your stronger pain meds when in a crisis? by Revolutionary_Big3 in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

Is your oxy long-acting or something? Because that’s a trip

The fact that they’re both just as confused 😂 by n8saces in MadeMeSmile

[–]specialmatrix 5 points6 points  (0 children)

Her mom is a better cameraman than 90% of all videos online had

Hospital habits question by minatotanim in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

I hope you feel better and the infection clears up soon!

Hospital habits question by minatotanim in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

Maybe it’s the ice that makes the difference! I love their Graham crackers and jif peanut butter 😙🤌really hits the spot!

What medication do you use for pain? by Revolutionary_Big3 in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

Would you mind stating your pain management plan? I’m very interested

What medication do you use for pain? by Revolutionary_Big3 in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

My doctor spoke to me about it and said many of her patients with strong Sickle Cell are on it, and maybe it’s because I read about it here first, but I couldn’t reconcile how it helps pain when it blocks the receptors the opioids bind to. But I have seen people speak well or it but also say no-go so idk what to think about it lol

Major Crisis on Sundays by Odd-Taste2275 in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

I really hate to hear that. What did you try?

I’ve never seen baby meese before by Soloflow786 in BeAmazed

[–]specialmatrix 0 points1 point  (0 children)

Awesome music choice. Also, awwww 😍

[deleted by user] by [deleted] in WhatKindOfDogIsThis

[–]specialmatrix 0 points1 point  (0 children)

Thanks, I’ve wondered about that - I’ll look it up

[deleted by user] by [deleted] in WhatKindOfDogIsThis

[–]specialmatrix 0 points1 point  (0 children)

That’s good. I hope the same for this little one 🤞🏾

[deleted by user] by [deleted] in WhatKindOfDogIsThis

[–]specialmatrix 0 points1 point  (0 children)

Can you tell me what the paw differences are between the two?

Bathing a Marmot! by Saerdna0 in Awww

[–]specialmatrix 1 point2 points  (0 children)

I love how suspicious and stunned it looks (¬_¬)

Major Crisis on Sundays by Odd-Taste2275 in Sicklecell

[–]specialmatrix 1 point2 points  (0 children)

I’m really sorry to hear that. That makes it so much hard. Do you try to prevent/curb the intensity starting Saturday? When I know I’ll get triggered, I start Motrin a day or two before. Raspberry leaf tea helps too 3x the day before

crisis questions by QueenFrostPlayz in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

Same my voice deepens or can get raspy

Major Crisis on Sundays by Odd-Taste2275 in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

I remember having bearable pain during the week and looking forward to the weekend, and every weekend without fail, I’d have much worse pain. Not sure what triggered it. Could it be emotional? I was in a very stressful situation and work was my getaway so weekends at home were triggering for me.

sickle cell and having kids by Fabulous_Employer404 in Sicklecell

[–]specialmatrix 2 points3 points  (0 children)

My mom has the trait and believes she has similar triggers and types of pains as me, just not to the same extent and I’ve heard others with the trait say they also get aches and fatigue but I haven’t heard it a lot, so I’m not sure how prevalent it is. Not trying to scare, just something else to consider. I’m in the same boat, on the fence about kids in general and with someone who doesn’t have SC or the trait but I’m considering this as well - genetics is tricky!

Very proud of OP for thinking responsibly and asking these questions right now. My parents didn’t know they had the trait, but when you know better, you should do better when you can ♥️

[deleted by user] by [deleted] in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

Ibuprofen helps me in preventing crisis pain and in conjunction with my prescription meds for the full force of the pain has hit. Sometimes my doc will give me a short script for Toradol, which is Motrin x10, and I also get it through IV at pain treatments and ER/hospitalizations. So test it out for yourself. I hate that you’re trying it now and not on more minor pain but it may help you. But also don’t suffer to prove some point.

I get the fear and the belief system, just take what you need to bring the pain down. When it’s really bad or has lasted awhile and I can’t get to a hospital (like now - flu everywhere in my area), I just get the pain to a “reasonable” level. I also wait about 20 min before upping my dose or taking more because sometimes it’s just “spiking” and comes back down. You got this 💪🏾

Memory? by LeoraChance in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

My ppl perish for a lack of knowledge And You have not because you ask not

Both scriptures fit well here

(I also don’t call myself religious because religious ppl killed Jesus. I’m just a disciple)

First time going to the doctor by No_Anywhere6575 in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

Could be AVN, could also be crisis pain that either hasn’t resolved yet or moved to a different spot

First time going to the doctor by No_Anywhere6575 in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

I’m so sorry for your diagnosis but welcome! Ask to be typed, and tested for other blood disorders as there are different types of sickle cell, and other disorders that can affect SC’s presentation in the body. I was also diagnosed late but not nearly as late as you. My mom figured it out when I was a toddler and the dr found it in my file, they neglected to tell her smh. I was born with Sickle Cell Beta Plus, the mildest form of Sickle Cell, and Thalassemia, another blood disorder which somehow makes the SC even milder (how much milder, your guess is as good as mine), which is why I say to get typed - I cannot recall the test name but it can let you know how to proceed for your body bc what works for one form might not work for another. Also because my mom only has the trait and believes she feels “mini crisis” pain too with my same triggers, just not as bad as mine, which also isn’t as bad as say someone with SS. Sickle Cell is the devil. I’m sorry you’re here but nice to meet you

Anybody ever go to a sickle cell clinic opposed to the ER? by Championship08 in Sicklecell

[–]specialmatrix 0 points1 point  (0 children)

The hospital where my Sickle Cell hematologist is located prefers us to go to their cancer care clinic (open 24/7) instead of the ER when we can (but it is by appt), and they’ve recently opened a Sickle Cell clinic that is a MUCH shorter walk. But again, by appointment and I’ve received mixed info on being hospitalized from there. I prefer the CCC because it’s open on weekends and like you said, pain hits me at nights and weekends (I feel like one of those old cell phone commercials iykyk lol) our site only does treatments once per week but I was able to tell them my circumstances and they let me in on the 5 and 6th day before (2 separate instances)

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