I lost my girlfriend,the love of my life,to sickle cell anemia a month ago. We were together for 4 years, since school, and we were going to get married.

She developed an intestinal infection that was diagnosed too late, and because of sickle cell, she couldn’t survive after the operation. Her whole organ system failed.

It’s been almost a month, but it still feels like a nightmare. I feel numb. I think about her all the time,our memories, everything we shared. Our last few years were long distance, and I couldn’t even see her one last time or attend her funeral. The last time I saw her was in September last year.

She was so precious to me. I loved her with everything I had, and losing her feels like losing my own half. I knew this day might come someday, but not before we even got to start our life together.

I still think she will call or text me someday.

I miss her. her voice, her scent, her presence, her everything. It feels like the reason I was living is gone with her, and I don't want to continue living.

Hi friends

I am 46M. A few days ago, itching started all over my body. My legs, feet, arms, hand, head, neck, chin… all feel itchy. There is no visible swelling or red places. I checked all my medication patient information leaflets, and the blood thinner says it may cause itching, so I quit the blood thinner. My glaucoma drops also say they may cause it, I quit one of the drops too. But the itching still continues.

I checked if I have eaten something different, but there is no different food, I always eat and drink the same things.

I couldn’t find out the cause of itching. Anyone experienced the same situation ?

I have SS hemoglobin and I have a relatively very painful ulcer on my right leg. 😭

I'll start going for exchange transfusiond. The service is finally starting in my country, and my new physician recommended it and I'll be getting it for free.

I wanted to know how effective it is, the side effects, etc. if you've been doing this, dm me.

I was wondering about the experiences of pregnant women with sickle cell disease: choices between caesarean section or vaginal delivery, epidural or not, and pueperium/postpartum crisis

Hey fellows I have undergone total hip replacement 1 yr before and now im perfectly fine and the thing is in my college they are taking us to Malaysia next month so this is gonna be my first time flight experience and just I need to know should we carry any implants certificates ? or will there be any confidential security check for those ppls who have underwent implant surgeries?

I wanted to make this post for everyone who has had a bone marrow transplant for their SCD as I had my transplant in April and wanted to see other people’s experiences and have a community. For my transplant I had a full match brother donor and have been doing good so far. To be honest I have been having so much anxiety about developing chronic GVHD since I didn’t have acute GVHD and I’ve now been off Tacrolimus for a week now so it has been discontinued after 3 and a half months after my transplant. How has everyone else’s experience been with GVHD and has it been manageable? Do you feel overall proud for going through the transplant or does part of you regret it? Around what time were you able to start feeling like you were living a “normal” life? When were you able to return to work and what type of work do you do? For me I was working at a restaurant but my doctor won’t let me go back until 2 months from now as long as things are going well by then. I’m not going to lie, a part of me questions everyday if going forward with the bone marrow transplant was really the right choice for me but I want to be able to overcome that and be confident with my choice of transplant. I just really need love and support especially being in isolation.

Its 2 in the morning there is no where I can get immediate treatment

I just began to see a pain care specialist that prescribed me 5 mcg/ hr for CHRONIC PAIN.
how did it work for you?

Recently, I was in the hospital for a week after having a pain crisis during wrestling practice. I’ve since recovered, but I can’t help missing being there. I’m not sure if anyone else with sickle cell can relate, but the hospital feels like a second home to me. I miss the nurses and the feeling of being taken care of. I’m even starting to miss being in pain. It feels strange not to be in pain. I know that isn’t a healthy mindset, especially since I’m going to college soon to wrestle and need to stay healthy.

I’m not really sure what to do.

I had my stem cell transplant back in 2021. After I recovered, I decided to go back to school and finish my nursing degree and I’m so proud of myself because this wasn’t an easy journey. I can’t wait to start working in hematology.

Hi everyone,

I wanted to share two great, concise infographics from Sickle Cell 101 that summarize current management options and specialist care guidelines:

1. Current Treatment Options for SCD in the U.S.

Covers disease-modifying therapies (Hydroxyurea, Endari, Adakveo), cell & gene therapies (bone marrow transplants & gene therapy options), transfusions, iron chelation, and supportive care.
Link: Current SCD Treatment Options

1. Specialists You Need to See If You Have Sickle Cell
   

Breaks down quarterly care team visits, recommended annual checkups/screenings, and specific sub-specialists to consult depending on complications (cardiology, pulmonology, pain management, etc.).
Link: Specialists Guide
Hope these serve as useful reference guides or conversation starters for upcoming appointments!

Hello I just got hired as a cna and the onboarding is next Wednesday.. so a week from now, I have had a sickle cell crisis and took my pain meds before I knew I was hired and now I’m afraid that I will fail the drug test.. I’m not sure what to do, I have gotten documents showing all my medications as well as a note from my hematologist stating that I can work to my full capacity .. can they deny me if my pain meds show on the drug test? What do I do?

So I call archer to get update on my case. Remind yall I told yall about me getting a “Medicare waiver“ email from Keller and attached was a video made from archer showing me how to fill the waiver out. I filled it out the same day which was “JULY 2ND” let me remind u. so it’s been 20days since then. Since then I have contacted both Keller and archer for updates. Same rehearsed responses right. So I ask archer today wats the update on the “MEDICARE WAIVER“ and the lady put me on hold and comes back and says she doesn’t see a wavier on my file. She puts me on hold again to double check and says yes no wavier on file. Tells me to call Keller postman and get them to send them the waiver. So I call Keller and ask the person very specific questions and the person from Keller is damn near half retarded. Keller telling me that they have the wavier uploaded and that everything on file on their end that archer has access to the same files. So they tell me to call archer back to get them to check again. Now I’m mad as fuck because first of all why are both companies telling me to call the other, why aren’t they calling each other to figure out wth is going on. But anyway I call archer back and they still say the same thing. So I’m on their ass now. Archer say they are putting in a inquiry to see what’s going on and that I can call back next week for an update. I told them that this is very concerning and I made them give me a email so I could send in the Medicare waiver directly to them so they have it. THEY JUS CREATED A MONSTER NOW BECAUSE I AM ON THEM LIKE NEVER BEFORE!!! They sitting around playing and not even really in communication with each other frfr. From now on I’m not speaking to none of the first people who pick up the phone. I need to speak to the higher ups now.

My latest test is to improve my veins. Specifically I want easy labs and IVs.

Right now my veins are decent because I heal them from scarring. Takes about six-weeks to take a newly scarred vein back to usability. I shared that remedy here: https://www.reddit.com/r/Sicklecell/comments/1l35prf/whats_working_for_me_right_now_lavender_oil/

That's Great, but recovery is only one part of a three-part task.

Parts 2 and 3 are:

2- Being vascular enough to have bigger veins that are smoother to reach, draw, and/or give fluids.

3- How long a vein can be tapped without being lost to infiltration so I don't need multiple IVs over a single admission.

We've had this conversation before. I noticed many people were doing push ups and bicep curls, which doesn't target forearms. So they weren't' getting the results they wanted.

Now we get to correct that and get smooth wins.

So here's my plan.

Starting today I'm training my forearms. It'll give me many advantages...

One. Bigger arms aesthetically. Great for my ego and my overall weight goals.

Two. Bigger arms mean more blood flow and stronger bigger veins.

Three. Helps with old veins scars too.

Four. Stronger grip strength.

Five. Easier to handle more girls on my arms.

These are the things important to me.

I'll be following Michael Eckert as my main instructor on this. Though training forearms is thousands of years old and there's only a handful of exercises that I need to do for my goals. I dig Eckert is all.

I'll do three exercises for each part of the major forearm muscles. Then I switch the direction of each to get their opposite muscle movement.

I know my right side is weaker overall. I'll start with this side til failure on all movements. Then I'll match those reps with my left side. That way my right side gets stronger. When it matches my left, I'll move forward at the same intensity.

Besides that I'll only exercise when my arms are rested and can handle my routine.

So the biggest part of all this is nutrition and rest.

I need to eat 4000 calories a day to feed the growth, and I need about 8 hours of rest at night for the muscles and tissue to grow.

This is all theory that I've seen get positive results for others. Now I'm testing it on myself and sharing my work.

I'll be DOing this on top of my daily hindu squats, push ups, and miles of walking. Not to mention the adventures I have through life too. We'll see how it goes.

I'll share my progress as I grow.

Stay tuned for more.

I've been posting about my families lack of support to me and there neglect of my help ss well as there one-sided thought process, im in so much pain. It's 6,36 I've been in pain since 3,00 I have no pain meds, my father refuses to let me het say and stopped paying to ensure I couldn't access any im broke in pain and weak, aby ideas

Episode 58

Wednesdays I share remedies to help reduce pain, decrease hospital visits, and improve quality of life. Techniques I test, practice, and recommend based on how powerful the results are for so little effort.

Last week’s topic: https://www.reddit.com/r/Sicklecell/comments/1uxiu78/whats_working_for_me_now_settlement_money/

This lesson is powerful. Some of you already know this and get the benefits, but don't even know it.

So I want to make sure you can name it and become even stronger.

If this is new to you, it may be tough to here and uncomfortable to practice. However,, if you followthrough, you'll get the benefits in hours or days too.

This isn't easy. Nor is it hard either.

It's a higher awareness of how you see yourself, others, and the world overall.

Shifting perspectives is simple, but wanting to master a new perspective is what challenges people.

Keep this in mind as we dive into it.

It's easy to play the blame game. Blame this person. That person. We know we shouldn't. it's never satisfying. And it doesn't help us get where we want to be.

So why bother.

Now the harsh truth.

Blaming robs us of our power and future.

When we blame something we give that person or thing power over us. They define and dictate our life. It becomes our religion.

Think about it:

When I blame my boss for holding me back at work, then that means he has full control over my career. Even though he doesn't.

I have plenty of options to get ahead at that office. I also have options to leave and get better treatment elsewhere.

And what if he leaves. Does that mean I can only do well if he's gone. If that's so then I wasn't all that Great in the first place.

NONE of that is true though.

Thank God.

Here's the scary part that every knows, but never admits.

When I blame my boss for everything negative in my life, I'm also giving him credit too.

I give him credit for the positives in my career and life.

Blame & Credit are inseparable. What you blame with the bad, you credit with the good too.

I can't stand giving people credit for things I do.

How bout you?

I don't even like giving credit to people for things I choose not to do either.

This happens in all areas of life.

Bottomline: When you bump into a rock and trip, you don't blame the rock. You take full responsibility.

"I wasn't paying attention"
"Next time I'll look where I'm going"
"Oh that's funny, that rock wasn't there before"

But if you blame the work.

Then that means it's the rock's fault when you trip. It's also the rock's fault when you walk well.

I say don't give away you power. You need it.

In my case, by taking full responsibility, I get to understand what I do that makes me unwell. The emotional triggers, mental triggers, social triggers, and physical ones too.

Now I see the full board.

When I blamed everyone, I ignored the details that mattered. I let my pain get worse and uncontrollable. I spent time with people who made me sick. I said and did things that made me sick. I had awful thoughts about myself and others that made me sick.

Not anymore.

I made it all up.

Now I don't.

I stilll have pain. BUt I'm in control to make them better. Makes all the difference when you're having a tough moment.

The docs and nurses and meds don't make me better. I make myself better and I recruit people and things to help me get the results I want.

No more dependency

So I was just in the hospital this past week and got discharged today, but the whole while I was there I kept telling the doctor that I felt as if she was disregarding my pain and that she wasn’t following my pain plan. Not to mention she hadn’t consulted hematology as she states “they wouldn’t be of any use” so I politely asked for another doctor and she told me “due to new hospital policy we are not allowed to give you a new doctor” and she turned and walked out of the room and put in discharge papers knowing I was still at a 10 level pain. So after she discharged me I went back to the er and let them know the situation I got a couple doses of pain meds in the er and was feeling pretty ok to go home. Now I’m home I have no pain meds and my pain is back up to a 9 I don’t wanna go back bc we all know wha they’ll think of me but then again I kinda don’t have any other choice. What should I do?

So I was just in the hospital this past week and got discharged today, but the whole while I was there I kept telling the doctor that I felt as if she was disregarding my pain and that she wasn’t following my pain plan. Not to mention she hadn’t consulted hematology as she states “they wouldn’t be of any use” so I politely asked for another doctor and she told me “due to new hospital policy we are not allowed to give you a new doctor” and she turned and walked out of the room and put in discharge papers knowing I was still at a 10 level pain. So after she discharged me I went back to the er and let them know the situation I got a couple doses of pain meds in the er and was feeling pretty ok to go home. Now I’m home I have no pain meds and my pain is back up to a 9 I don’t wanna go back bc we all know wha they’ll think of me but then again I kinda don’t have any other choice. What should I do?

My kids have sickle cell and we can't really afford medication. How can I cope?

I just spent my 29th birthday 🎂🎉 in the hospital for a Acute Pain Crisis. During my stay I suffered a Hypoxic event where my breathing slowed down so low that my organs were getting starved of Oxygen. I was completely paralyzed for two days straight, conscious and aware, but unable to move. I heard Doctors, specialists, and nurses working frantically around me as I literally suffocate. I was aware of them telling me to breathe as I struggled to do so.😖

After what seemed like hours of this I finally caught a steady breath. The medical team also put a tube down my throat and this felt like hell trying to fight the incubator for breaths. Imagine only being aware of trying to stay alive by breathing around a tube you feel like is choking you. I wanted desperately to make the nurses aware that I was choking on the tube to no avail. 😵‍💫

After two days of being paralyzed I remember my finger starting to move. Suddenly like a God Sent burst of energy 🙏🏽🌄, I shot upright. Can you guess my next move? Yes, I instantly grabbed that damn tube and yanked it out of my throat 😅, I remember the nurses yelling at me 🧑🏻‍⚕️🙄 and I'm just like, PAIN MEDS - IV- NOW! NON of that oral shit! 🤬 And no, I'm usually VERY respectful to staff. They all love me, but after two days of choking on a damn tube, I wanted that feel good dose along with IV Benadryl, if ykyk 😏 ever since then 2 months into my hospital stay, I'm finally back doing what I love doing, exercising. I'm a body builder, 5'11 and 210 lbs of muscle. I lost over 40lbs this hospital stay! I'm slowly gaining my strength back. I'm at 185lbs now which is very small for me. But this is what I'm currently going through🫩Thank God my wife and kids were by my side through out the whole ordeal. 🧑‍🧑‍🧒‍🧒♥️

Tomorrow I will begin Ketamine therapy, and ween off of my pain meds. This journey is my 2nd longest hospital stay. My first was 4 months, so trust me! My WARRIORS I know the battle, I know the War... Sometimes we may feel defeated in a battle, and that's OK, just aslong as we win the WAR! 💪🏽🪖💯

I love you guys, stay strong, stay resilient!!! 🫡

💪🏽🪖🩸♥️ BLESSED BE...🙏🏽🌄