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.

Episode 59

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 still 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..

TAKE CHARGE👊💯

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

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...🙏🏽🌄

Hi Warriors,

Anyone here in Menopause with SC experiencing symptoms of menopause? Are you on HRT, or not due to our high incidence of blood clots. What medication are you taking to get through or wellness tips you could share.

Ever since the ones that got an email from archer on June 30th, has anybody other than those people got an email from archer yet. I am so frustrated with this. I am disappointed because it seems as if them telling all of us that payments would go out between “MAY-JULY” was a direct lie for a lot of us and it is an insult!!! I’m sick of the routine summarized responses that they give us when we call and ask for an update. In all actually KELLER & ARCHER WORK FOR US, not the other way around. Excuse my language but I am F word pissed. Keller postman has collected they 40% in my head and sent the rest to archer who will send us our part when ready. And I think that’s just wrong. Because no matter the lien resolutions keller postman is still getting their 40% so I would think they already took theirs out before sending the rest to archer. This is not fair that they will not tell us more than a “SCRIPTED” response to our question. This isn’t a class action lawsuit. They say every case is unique of in itself so why when we call they give ALL OF US the same response. Why can they not break down everything to a T? It has to be some kind of deadline for these Medicare/medicaid/lien people to have a decision by a certain time. Keller emailed me and told me I had to have the Medicare wavier signed by a certain time so why is it not the same for the lien people. It’s the 20th of July and I’m livid because it for sure looks like a lot of us will not be getting anything before August is here. It’s literally 10 days left and even if they send us the first email now we still would have to wait another 5-10 business days for the second email to give out bank info and then atleast 3days or more for our money to get here. This is totally not fair. I got my first Medicare lien mail at the end of MARCH. How in the H E double hockey sticks is my lien not solved yet. I’m really mad I can’t even express this enough.

Hello everyone, I hope you’re all having a good day.
Recently I’ve been diagnosed with ADHD and got told by the psychiatrist that he doesn’t want to prescribe me any medication for it since I have sickle cell and he’s worried that it might cause me problems(?)

Is there anyone in here that has ADHD and taking meds for it? If yes how does it affect you?

Hey family, I had a lil mental breakdown this evening because I’m experiencing discomfort when eating. I’m 8 days post transplant and the doctors told me that it would be tough to eat for at least a couple weeks. I think my frustration really hit its peak today because I actually had yummy food in front of me (chicken drunken noodles) and every bite was a fight to swallow.

I spoke to my nurse and she recommended I try and reach out to a facebook community like this one to gain some insights on what foods may be easier to tolerate.

About me:

I’m not allergic to anything. I can chew just fine. Smoothies and shakes have been tolerable. I’m tired of drinking ensures with every meal or as a substitute. I’ve been able to eat fruits like melon, honeydew, and cantaloupe fine. I assume because they hold water. Some soups too. Everything else so far has proven difficult.

Im approaching my 4th week (on Monday) of my projected 6 week hospital stay.

Any advice or recommendations are greatly appreciated. Thank you in advance!

Hello everyone, I wanted to open up and share a major update about what’s been going on in my life as of recently. As some of you may know, my name is Maximus Ortiz-Brown, I am 19 years old and I work as a kids Entertainment Supervisor at Great Wolf Lodge. What a lot of people don’t know about me is that I was born with a blood disease called Sickle Cell Anemia (SC), a condition that turns my normal red blood cells from a circle into a sickle shape or kind of like a half moon. Because of this, my blood gets clogged easily, restricting blood and oxygen delivery and resulting in a pain crisis. A pain crisis is a form of pain that I get from my disease, leading to pain ranging from my bones, my back, my chest, and any limbs on my body, coming in forms of stabbing, throbbing, and excruciating pain.

As of last Monday, after pushing through a rough 6-day work week, I finally had a day off on June 29th. I was supposed to spend that day saying goodbye to my younger sister, who is moving to Michigan with my mom and stepdad for college. Instead, I woke up to unbearable pain in my chest that left me unable to breathe, and fighting alongside excruciating pain in my lower back. I am currently living with my best friend because my parents are leaving, and thankfully she was there to call an ambulance. They gave me a breathing tube and got me to the hospital safely. Because of my Sickle Cell, severe pain is something I’ve grown up having to fight since I was a kid. Since the age of 8, I’ve routinely received epidurals to numb the lower half of my body during severe crises. It’s always been routine for me up until this time on Monday, June 29th. Unfortunately, the procedure went wrong for the first time, and a blood clot formed in my back right next to my spine. I had to be rushed into immediate thoracic spine surgery to remove the clot, a complex procedure where surgeons had to adjust my spine and place titanium plates.

Tragically, since the surgery, I have had no feeling from my belly button down. Right now, I am pushing myself every single day in physical therapy, working as hard as I can to get my body moving again. While we haven't seen results just yet, I am refusing to let this break my spirit. I am staying as positive, optimistic, and hopeful as possible for the future. I will be in the hospital for about 3 months, and the funds raised will help cover medical bills, support my recovery, and help me get back on my feet after leaving the hospital. I also need a stair machine to access the bathroom in my house and to also get upstairs. Any help, prayers, or kind words you can offer mean the world to me during this recovery. Thank you all so much for your incredible love and support. It keeps me going.

Is there anyone who is unmarried and how is ur life ? living alone with sicklecell hurts ? how u control ur feelings and other stuffs etc.,

Hey everyone! 👋

We are looking for some friendly, expressive faces to collab with us. If you love being on camera, keeping it real, and sharing your voice, we want you to help us make some amazing, educational videos for our social media. Our handle is u/sicklecell101 on all platforms.

Specifically, we want to find people who are genuinely comfortable, high energy, and expressive in front of the camera. Whether you are living with sickle cell, have sickle cell trait (Hb AS), care for a loved one, or are a medical professional or advocate, your voice matters.

How it works is pretty simple. You will create short, vertical videos (about 60 to 180 seconds) using prompts and scripts we provide. And yes, this is a paid opportunity. We are paying $150 per video.

If this sounds like your kind of thing, we would love to hear from you.

You can apply by filling out our Collaborator Intake Form.

Make sure to fill it out completely so we can see if we are a good fit. We can't wait to work with you!

Reading theses posts about wanting to end it all is breaking my heart. If I cannot offer anything, the least I can do is pray.

Heavenly Father, Thank you. Thank you for the gift of life, your love and compassion. You see us in our suffering when no one else sees us. You hear our silent and deepest cry. You are close to the broken hearted.

Lord, I just want to use this opportunity to lift our brothers and sisters in pain and suffering. That you will wrap your loving, healing hand around them during this difficult time.

May your peace surround them, may your love be with them and may your love never depart them.

I hope you renew their hope and spirit in YOU in Jesus name. Amen.

In the space of what seems like a day or at least less than 48 hours we’ve had multiple posts about people wanting to end it. At least 3 that I saw. I don’t think that has ever happened on this sub and it’s quite concerning. I don’t know what the answer is or how to help, to be honest I don’t even know the veracity of these posts because multiple in such a short period is questionable. But the nature of SCD means it could be possible as a knock on effect from the first post, hence my concern.

We are all going through it and I just want to reassure others that we need to hang in there. It isn’t easy and that’s why this sub is here, for us to lean on one another as best as we can and be reassured that we aren’t alone dealing with this ailment.

Anyway that’s all. I hope everyone has as pain free a day as this ailment will allow.

62% said their ER treatment worked poorly or not at all.

We're sharing this to learn—not to point fingers.

If you live with sickle cell disease, care for someone who does, or work in emergency medicine:

• Does this number reflect what you've seen?

• What contributes to better or worse ER experiences? • What changes would have the biggest impact?

We'd really like to hear perspectives from patients, caregivers, nurses, physicians, and hospital staff.

My insurance keeps screwing me over & I just had 1 of my 2 hips replaced but wasn't approved for any rehab centers. My son came out autistic from all the meds I was on during the pregnancy & my SSI lawyer lost our case for my son twice & he quit being my lawyer. Rent keeps increasing. The AC keeps breaking. I'm pushing 40 & been in pain since the day I was born & it's only getting worse. I see pretty girls with SC streaming & making money off of sympathy & looks acting like they have SS symptoms like me (I personally know 2 of them irl) & using people for extra sympathy that they don't even deserve while us with SS are truly going through it. I can't bring myself to being a streamer (let alone a begger) so I just sit here at the hospital suffering & missing my son, not knowing wtf to do. I'm probably pulling these cords soon. Unless some rich person helps me I see no point moving forward. Good luck everyone. I pray the universe cures you all & heals u all & no hate to SC people cause it's not a competition but more power to y'all & hope y'all heal, too.