Episode 70

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 topic: https://www.reddit.com/r/Sicklecell/comments/1x6b8um/whats_working_for_me_now_fall_for_deep_tissue/

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Dig this:

No one talks about an important issue we face with SC. So let's do it now.

When you start to improve your health with SC, things get worse before they get better.

This is normal and necessary.

It's also why most people avoid the process because they think it's a bad thing.

Thankfully it's not.

Happens with all health journeys.

A lifetime of certain habits makes SC strong. Now you get to learn new habits that limit the illness.

Fixing things reveals new issues though. New soreness, hurt, and pains.

I like to think of them as growing pains.

Picture this.

You're renovating a house. You think you're only going to add new hardwood floors. Then you take out the old flooring and find molding from leaking, lead pipes.

Of course you can ignore the root issues, but it's best to address them before installing new flooring.

Same for you.

You change your diet to lower your anemia and sickling. So now your body gets to heal. As it heals it addresses key areas you didn't know need work. Think your organs, skin, digestive system, etc. Even your nervous systems, which may cause psychological challenges.

Thing is healing hurts because you detox first.

The result is to remove all the terrible byproducts of your old life. All the accumulated chemicals keeping you unwell.

Doing that leads to new symptoms.

Such as nausea, vomit, diarrhea, edema, failed appetite, insomnia, aches and pains, lethargy, impotence, weight loss, colds, flu, fever, immobility, and more.

This is why thorough testing is important to the medical process.

Some symptoms are Great signs, and not bad at all.

They may not feel that way, but it's important to keep going.

So that's my warning to you so you aren't afraid to get stronger and possibly put an end to your hospital visits.

It's also my encouragement to you that this is a process. Takes time and most important commitment.

You can't skip steps either. First step is detox, which leads to some pain and symptoms worse than you start.

Over time it subsides though.

Definitely worth it to defy what everyone told you was impossible.

The key is to test to know if they're healing pains or something else.

Take Charge👊🏾💯

Hi everyone — I’m reaching out to share Marcus’s story. At just 34, he’s been living with sickle cell since childhood and now needs a hip replacement to find relief from constant pain and regain his normal life. If you’re able, please consider donating or sharing to help him get closer to the support he needs — every bit makes a difference.

https://gofund.me/9aa0d81a9

I asked my doctor for butrans in pill form (which I’ve had the film in the past) to which she said since she wasn’t sure if there was a pill form (there is) and then she prescribed me narcan?? And my mom picked up my meds for me when I meant to leave the narcan so now it’s on my chart and I don’t want the stigma. I’ve been taking the exact same pain pill dosage (oxycodone) and quantity (56) and even refill date for like 15 years. I’ve tried other meds but this has been a constant. I had narcan once before, shortly after I came to this new doctor. I just don’t understand why is be prescribed narcan after all this time, when nothing has changed about my interaction with the medicine. Am I being irrational?

Does anyone have a hard labor job and if so what’s your experience and how do you manage. I can get inside the union and work construction but I’m unsure not knowing how my body will handle it I’m still young and in my prime but hours of hard labor and weather conditions might not mix well

Hello everyone! My name is Alexander, I’m 28 years old, and I live in the Dallas area. I have sickle cell disease and I know the challenges that come with living with it. I’ve been thinking about starting a support group here in the DFW area where fellow sickle cell warriors can meet in person, connect, share our experiences and support one another. I want to create a space where we can come together regularly, build friendships, encourage each other and have people around us who truly understand what living with sickle cell is like.

If this sounds like something you’d be interested in, please comment below or send me a message. I’d love to connect with other warriors in the area and hopefully build something meaningful together!

Thank you!

I barely get sick I have bera thalessmia minor..I'm 52 and I lost my hearing in my left ear completely and wear hearing aids.

The thing is I can probably do jobs that don't require much physical activity like gas station clerk or security guard.

Am I wasting time applying? I got my records from the hospital and it's 1700 pages and I'm going to send them to ssdi.

Is this worth it? I was told not.to.work while applying because it messes up the cause.

Hi, my name is Marcus Goodwin. I’m 34. I had sickle cell when I was eight years old. I need a hip replacement, and I’m just asking for help.Anything will help, just please. I’m tired of going through this pain. I’m tired of having to live too by taking pain medication every day. I just wanna be normal again. Like I said, all donations are accepted. Don’t go beyond your means . Thank you. Have a blessed day. https://gofund.me/50d39e7a3

All my life my fellow Sickle Warriors have told me I don't, "Look like i have Sickle Cell." Can someone please tell me what a Sickler looks like?

I am currently U16. I used to play for a team when I was U7 but stopped as I was advised to by the doctors. I eventually started playing again in the U14 season and currently. I play in quite intense leagues such as the EJA and Bedfordshire Youth Saturday League div 1. I keep myself in pristine condition physically but I tend to get seriously out of breath every few matches. Just wanted to know if there is some sort of solution to this problem

!!HEAVY TOPICS AHEAD!!

Okay, so I came here a while ago talking about my parents, my father, and the addiction situation. Now I’m just here to let it out, I guess.

I grew up mostly ignoring my SC. I’d take my meds when I remembered, and play to my limit, which usually meant no play—just sitting, reading, or talking, maybe chasing friends for a bit. This was during my primary school years, up to age 12. Looking back, I realize I’ve always had memory and attention issues, and I’m starting to think I might be either ADHD or autistic. When it came to my illness, I never paid attention unless I was in pain. I sometimes chose not to research it, even though my stepmom encouraged me, because learning about SC never painted a happy picture. Those primary school days hold my first memories of feeling worthless and wanting not to exist, or just going through depression. My earliest memory was sitting in class when the teacher explained self-esteem and asked if we had it—I didn’t raise my hand at first, only doing so to avoid being called on. Another time, my stepmom gave me a letter to deliver to my teacher. Memory is tricky, so I’m not sure if she told me it was about me wetting the bed, or if I just thought that’s what it was about. I didn’t want to give it to the teacher, and later I think I threw it away. I remember crying at school that day because I was a bed-wetter, and every time it happened afterward, I felt deep shame. It didn’t take long for me to learn what suicide was; I often thought about it and even tried once or twice. One memory I keep revisiting is hiding a bottle of weedkiller behind the fridge at home because I wanted to die but didn’t want to leave. I kept it there for a day, thinking that if I ever decided to, I could just end it.I don’t remember my exact age during that story, but I was young. The point is, I’ve been struggling with depression for a while, and at this stage, if I were diagnosed as chronically depressed, it wouldn’t surprise me.

I remember throughout my life being under pressure to achieve, with my family always expecting high grades. I recall my father waking me up in high school and threatening to pull me from school if my grades kept slipping. Back in primary school, I was often called “the scientist,” and occasionally someone would say I’d bring prosperity in some way—real golden child treatment. My father once used this against me during a car ride, reminding me that people used to think I was a prodigy. After that day, I never referred to myself as smart again, and sometimes I’d even correct people when they said I was.

I think I developed moya moya in grade 10. I found out I’d had a stroke, and not fully grasping the seriousness, I thought that was it for me, my life was over. I became really depressed and basically stayed in my room for I think about three days before my dad came in and said something like, “You can’t stay like this.” He got me to start coming to his garage. Honestly, people are overrated.

I remember going to the garage without knowing why I was there, feeling disconnected from myself. One day, my father was chatting with one of his coworkers and said, "<coworker name>, I found someone lazier than you." I can’t recall if he pointed at me, gestured, or how I even came to know this—whether I overheard it or someone told me later. I just remember thinking, "But I just had a stroke, what do you expect from me?" I’ve noticed that people care, or pretend to care, only up to a point, and then it’s like you stop mattering—they only care about what you can provide. Either way, that moment marked the start of the latest chapter of my life.

When I started working at the shop, it was basically bullying every day. They’d tease me about being lazy, and I’d go home with a pounding headache. My dad would drag me back, and I’d be confused about what had changed between him being a caring parent who understood his kid just had a stroke, and now essentially an employer trying to squeeze me dry. Over time, I learned to play the game—if someone asked me to do something, I’d do it. I still got teased, but less, and sometimes I’d cuss, which led to reprimands (at my father’s company). At that point, I didn’t hate my people; I didn’t even see any of this as unnatural because I used to think Black parenting was harsh (it took me a while to stop thinking like that). But playing the game came at a cost—every day I’d be in pain from working, so every day I’d take pain meds. Enter the era of bullshit.

All of the above is a simplified version, but here’s what’s new: my dad has developed a dislike for my use of painkillers, viewing it as an addiction. I disagree and think labeling it that way without evidence is dangerous, and now I’m dealing with the fallout. About three months ago, I woke up in pain. My stepmom and brother were ready to take me to the ER, but my father told them not to, which led to three hours of sickle cell crisis. Instead, my stepmom drove me around in the car rather than taking me to the hospital. They only took me there in the morning, maybe realizing they couldn’t leave me home alone like that. My stepmom said my dad once told her he wanted to see what would happen if they left me to handle it without meds, so maybe this stems from that. The whole situation left one of my arms completely useless for two weeks and made me deeply distrustful and resentful toward them. I keep things civil but have distanced myself even more than usual. Since my dad doesn’t want me taking pain meds, I just don’t go to work, which I feel has them acting differently. Earlier this week, I needed hydroxyurea, which costs money. I asked my father for it, but he went into a monologue and questioned me. I still bought the pain meds, but the whole situation weighs heavily on me, and I don’t like having to sneak around and lie to get them. My doctors at the sickle cell clinic suggest finding another job to work toward independence, but that’s not easy. I looked into call center jobs, but they’re too far away, and other places either haven’t called back or have turned me down. The good thing is my YouTube channel is growing and healthy, with one person funding me and a friend deciding to help, but I still can’t relax. I’m just so tired of feeling scared and hate that almost every thought is about anxiety over my situation.

I really would like some advice, but honestly, just feeling heard would be a blessing right now. If you could just say something, I’d be thankful. Sometimes I feel like crying, but I think I’ve forgotten how to.

Hello everyone!

First, we want to acknowledge the strength and resilience of those living with sickle cell disease and the family members and caregivers who support them. We understand that everyone's journey is different, and we truly appreciate the opportunity to learn from your experiences.

We are graduate students conducting a survey, link here, as part of our biopharmaceuticals course to better understand the experiences, concerns, and treatment preferences of individuals living with sickle cell disease and their caregivers, particularly regarding gene therapy.

Your experiences and perspectives are incredibly valuable to us, and we hope to better understand what matters most to the sickle cell community. Participation is completely voluntary, and all responses will be used solely for academic purposes.

Thank you for considering sharing your story and perspective with us. We sincerely appreciate your time and willingness to help us learn from your experiences!

Survey https://docs.google.com/forms/d/e/1FAIpQLSckqtKWjcD3LFTYEfK9Y8LrjGwaEVgDN3ckspt0HLCK91OKJQ/viewform?usp=header

Is anyone still waiting for Medicaid to release liens,I been waiting for a couple of months for Medicaid to finalize deputes…

Hi everyone,

I am a writer teaming up with an independent filmmaker to develop a script for a short film centering on a young girl living with Sickle Cell Disease (SCD).

Our main goal is to shed light on how this condition truly impacts individuals and families, raising awareness and fostering better public understanding. Because we want to avoid clichés and ensure the portrayal is deeply authentic, I want to learn directly from the community.

If you are a patient, parent, or caregiver willing to share your firsthand experiences—whether it’s about daily life, pain crises, navigating healthcare, or the emotional toll—I would be incredibly grateful to listen. Please feel free to comment below or send me a DM. Thank you so much for your time and openness!

Hi, my name is Marcus Goodwin. I’m 34. I had sickle cell when I was eight years old. I need a hip replacement, and I’m just asking for help.Anything will help, just please. I’m tired of going through this pain. I’m tired of having to live too by taking pain medication every day. I just wanna be normal again. Like I said, all donations are accepted. Don’t go beyond your means . Thank you. Have a blessed day. https://gofund.me/f277876ff

Hey everyone, I wanted to ask if any of this has happened to any of you. In March 2023 I had kidney and liver failure. It was a terrible time in my life. I was unconscious for about 4 days. Since then, I started grad school in 2024. I noticed it took me much longer than before to complete anything. Now in 2026 I had assignments to do and I can't focus at all. It's getting frustrating and wanted to know if this happened to anyone.

I just want to say a huge thank you to everyone who saw my post yesterday and helped me out. ❤️ BFF
I was able to receive around 10% of my goal in just one day, and honestly, I’m incredibly grateful. Yesterday, I was struggling to figure out where I could even get $200, so seeing people come together to help me means more than I can put into words. Every little bit has made a difference, and I genuinely appreciate everyone who took the time to donate, share, or offer words of encouragement.
My GoFundMe link is still up, so if anyone else would like to help, I would be extremely grateful. Thank you all for giving me a little hope during a really difficult time. 🙏❤️

https://gofund.me/dc5645a4c

Episode 69

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 topic: https://www.reddit.com/r/Sicklecell/comments/1x5w5uc/whats_working_for_me_now_talk_with_medical_cure/

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Dig this:

Each season is a 12-week cycle that matches our bodies rhythm to heal and strengthen itself.

Each weather cycle benefits our fitness. Working with those cycles keeps us out of the hospital and in better control of our health.

Not to mention they prepare us for the next season.

For those in the northern hemisphere that means winter's on the way.

So let's make winter easier by getting the most out of this fall.

Fall (or autumn) is for reflection and preparation. We get to recover from the summer, as we prepare for the slower and colder months where stiff muscles joints are likely.

Everything you do regularly that keeps you out of the hospital and with reduced pain stays the same. During the fall we add a focus on key areas to level up our fitness.

Think along these categories:

Deep tissue repair & collagen

This season is about improving blood circulation. Expanding your blood vessels so when they shrink in the winter they don't shrink that much. That's key to staying warm in the cold.

We also add collagen. Ideally you eat it. Supplementation is a Great second option.

Consider arm and leg exercises that suit your level of activity. I shared the lazy approach here: https://www.reddit.com/r/Sicklecell/comments/1u5yahm/whats_working_for_me_now_easy_exercise/

As you see, you can get plenty of exercise by simply standing still, if you're in the right pose.

Learn to take deep breaths. This is key to life, and living pain-free. In the fall, it's how you increase bloodflow and oxygenation down to the deep tissue preventing stiffness.

When you feel cold, this is a primary reason for it.

Immunity boost

Our immunity is based on what percentage of our cells are in disrepair. Sickle cells in and of themselves don't necessarily fit that bill so you may be better off than you think.

For the cells that are issues, hydration, nutrition, and rest will fix. Translation electrolytes, dense meals, and a sleep rhythm.

The foundation is hydration. Without it nothing in your body gets done, so start there. Takes less than 4-hours to dial it in today. https://www.reddit.com/r/Sicklecell/comments/1lk73i1/whats_working_for_me_now_no_h2o/

If you feel cold or intense pain often, give this attention now to fix it. Make this moment a chance to learn and master the fundamentals before winter.

Support intestines and nervous system

This season you want to boost your gut and nervous systems. Think dairy, fermented foods, and fats in general.

Each helps to promote a formidable gut biome, which regulates the rest of your system.

Fats calm your nervous system. The more the better. Likewise, the more you eat the more fat you burn so it's Great for losing unwanted fat if that's a goal of yours. Learn more here: https://www.reddit.com/r/Sicklecell/comments/1p1k00b/whats_working_for_me_now_heavy_cream/

With a stronger gut, you digest food well and get most of the nutrients out of every bite you take. With a fitter nervous systems, you'll be the calmest you've ever been.

Feeling irritable, anxious, overly frustrated to the point of being out of character? It's your gut speaking to you to remedy things.

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My daily and weekly routine includes the things I've shared, plus more I'll share on these subject in the following weeks.

It doesn't take much to make a measurable difference here you feel warmer, less pain, and the little pain you do feel is less intense.

All it takes is a bit of working in sync with the season.

Take Charge👊🏾💯

​

Hi everyone,

My brother was hospitalized due to a sickle cell pain crisis and was discharged 4 days ago. Since then, he has been experiencing severe lower back pain, which has now worsened.

The pain is mainly in his lower back and sacral region. He can barely walk or move, and staying still in one position seems to provide some relief. He has no fever or pain in other areas.

His doctor says it may settle down over the next few days and wants to observe, but my brother feels this pain is different from what he experienced before.

My questions:

- Has anyone experienced similar pain after discharge that eventually settled down?

- Was it part of the sickle cell crisis, or did it turn out to be something else?

I'd appreciate hearing about your experiences. Thank you.

Hi, I wanted to share Marcus's story—at just 34, he's been living with sickle cell since childhood and now needs a hip replacement to find relief from constant pain. Your support can help him get closer to living pain-free and feeling like himself again. Please consider donating or sharing to help Marcus on his journey—every bit makes a difference! 🌟

https://gofund.me/04b027aa8

Episode 68

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 topic: https://www.reddit.com/r/Sicklecell/comments/1x46w2b/whats_working_for_me_now_real_pain_docs/

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Dig this:

I'm not cure-minded. At least not in the sense of undergoing a procedure to be cured.

However, I understand how it works because I study it and visit clinics leading with these therapies.

I recommend it.

Most people count themselves out and avoid consultations.

Main reasons I notice are because they think they're priced out of the procedure, or that they live too far from a clinic, or they're concerned of the side-effects including becoming a new person, and more reasons still.

All valid reasons.

Valid reasons to be skeptical, not dismissive though.

Shit to the skeptical side. That means curious and observant. The scientific mind in action.

That means they only way you can make a solid conclusion is to visit to understand.

Think of it this way...

If you think it'll be a million dollars to be cured, VISIT and learn that's not necessarily the case. Now you see all the options that make it more accessible.

If you think you live to far away, VISIT and make it an investment in the form of a vacation or business trip. Now you're getting paid to go.

If you're concerned about side effects as I am, VISIT to communicate that and find out how they're addressing them.

So find a location near you. VISIT to understand so you know for sure without assumption.

Information is like a game of telephone. By the time you hear it, it's basically a lie. The only way to know the full story is to meet and work with the people on the ground floor.

Develop the habit of getting on the ground floor. To learn first-hand instead of hearing things third- or sixth-hand.

I say this as someone who already said NO to them all.

It's not for me at this time. May never be.

But my NO is specific to me so it can't speak for you.

If you're in the USA here are the cities I know of with curative techniques:

• Los Angeles, California
• Boston, Massachusetts
• Manhattan, New York
• Chicago, Illinois
• Baltimore, Maryland
• Philadelphia, Pennsylvania

Plenty more I'm missing. Help me fill in the gaps please.

What you'll notice each of these locations is a destination spot. You likely want to be there, eat there, meet folks there, do work there, move there, explore there. Etc...

Why not go to do all those things and more?

Plus take an appointment or two with the cure-teams there.

Best case you boost your confidence about your next steps.

Worst case you learn new methods to manage your SC and made fun memories in a nice city.

Either you win or you win.

It's your life. Live it on your terms of course.

My suggestion: don't talk yourself out of things you don't understand fully yet.

Take Charge👊🏾💯

Hi everyone, my name is Ralph, and I have sickle cell disease. Over the past two years, my condition has gradually worsened to the point where I have lost my job and my means of survival. This has taken a tremendous toll on me physically, emotionally, and financially, and I have become increasingly isolated. There have even been a few times when the weight of everything made me consider ending my life. Recently, my landlord contacted me about my overdue rent, and after explaining my situation to a few people, I was advised to apply for SSI. Unfortunately, I don’t qualify for benefits because I’m an international student.
I’m genuinely sorry for having to make this post in the channel, but I have reached out to a couple of the admins and understand that they may have a lot going on in their personal lives. I completely understand, as living with this condition can be incredibly draining. Right now, my most urgent need is help with my rent arrears. I have no family in the United States to turn to, and if I’m evicted, I honestly don’t know where I will go. I know everyone has their own struggles, and I don’t take it lightly to ask for help, but I’m humbly pleading for any assistance you may be able to offer. Even a small contribution or help connecting me with someone who can assist would mean more to me than I can express. I currently do not have a GoFundMe link as I understand this violates the rules of the channel and I do not want to be taken off it because this channel has given me a lot of hope to keep fighting since I joined. If you would like to help me you can text me please. Thank you for taking the time to read my story.

hi guys! i’m 18 with HBSS and becomes hydroxurea and folic acid what are some things that help you with your sickle cell? doesn’t have to be anything big just something that you noticed was helping. or if you’re a warrior who’s eyes get yellow often what’s something you use to help clear that up? i drink a lot of water and that’s the only thing i drink no pop or nothing but that’s doesn’t do much lol

Life has so much more to offer than hospital visits and pain attacks.

I want to celebrate that with you.

In-person.

Now that I'm back to trekking the globe, I want to meet you where you are.

Let's catch up at your favorite spot for an adventure.

We'll eat, talk, dream, and I get to hear about YOUR life.

If you prefer meeting privately at your place. Or if you're in hospital, I'll join you there too. Give you the support you need and the staff the kick in the ass it deserves.

No place I won't go with you once I'm in your area.

So I'll share my travel plans like Where's Waldo that way I won't dox you or I.

Let's begin...

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Currently I'm Stateside. In Catskills, NY area with the Amish folk for their useful insights on health care.

Headed to Massachusetts next.

Figure I'll visit Boston for a few days. Plus venture through the state. Think Worcester and Framingham.

Where are you this season?

Comment or DM, if you're in MA or NY this month.

Comment or DM if you're anywhere else in the world and want to meet.

Likewise, reach out if you want to be part of my travels.

My aim is to meet 250 members here ASAP, As SMOOTHLY As Possible. See faces and personalities blossom irl. A Great reminder that we're the face of SC. Not the hardship we endure.

Ya dig?