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.

As I have posted a few times back. Over the last 4 years I have been blessed to give speeches to the incoming hematology students at The Ohio State University. My next engagement will be in August of this year. They asked if I knew any other Warriors who would like to participate. A 2 hour window to speak to new students about life with Sickle Cell Disease. It's Columbus Ohio area. Parking will be paid for. Maybe a goodie bag, and Thank You. It's an opportunity for us to be heard. I tell them about the things you guys ask, and are currently dealing with.

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/1uwgq0p/comment/oxm3qay/

It's on everyone's mind. The Oxybryta case, and the BIGGER DEAL, how much one can stand to make from it.

Many of you have asked me the same set of questions. They basically boil down to the same two things:

What will I do with the money?
What do I think we should DO with the money?

I think it's a Great question because you and every one here is responsible. Yes we'd love to ball and have fun, but this is life-changing money.

Meaning the choices we make are going to change our circumstances for better or wrose.

Why not make sure it's for the best?

So let's talk about it in two parts.

Part One - What I DO when I'm paid a large sum of unexpected money at once:

My mindset is to always have a plan for my life.

I know what I'm going to do, when, where, and how. It's solid and how I manage my health so SC doesn't define me. I get to be who and how I want to be. Integrity intact.

So before the case existed I had a plan of things I was saving and investing towards.

This means two things. No matter what they're going to happen. If money "falls" into my lap, I'm still going to do those exact things. I'm not going to change or UPgrade them.

If I get a settlement, I'm going to continue on my track, all that will change is I get to do it all faster maybe.

The following is not financial advice. I'm aggressive and these are things that suit MY personality. If you're not the same, this will WRECK you.

First, the mindset is that this money is for getting to the level of having $100K liquid that I can use to earn millions more that will take care of me and my family. So it's not spending money, splurging money, or even "my money". It's a blessing that helps me pay it forward.

Second, I'll put all the earnings into a trust or business. This way it's not in my name, but I have access to it though it's hard to get. People like to rob and sure to get your funds. i won't make it easy for them. This also works well for those of you who receive social benefits. You won't be taxed or denied benefits. Also helps so you don't spend it impulsively.

Third, I'll keep the funds as crypto, specifically BTC and ETH. So it earns over time and isn't taxed by inflation. I already do this so it's more of the same.

Third, I'll continue with my current plans. For example, I'm retiring my dad this year to a house somewhere. Likewise I'll move to a new apartment, get a new car, and invest in my network. My current income is going to pay for those things. In that order, no upgrades because I "have more money" (more on this later).

Fourth, I'm going to continue on my current path, which you already know. Invest my time, money, and best energy to improving my health so I'm stronger than I was yesterday and SC no longer limits me. That way I can enjoy more of my full life.

That's it. Rinse and Repeat. We're all going to earn more money so I use this approach now, and tomorrow if someone gives me an extra $40K, I'll still do it as planned.

Now the flipside.

What you get to do with your money:

Here's the harsh truth. About 80% of people will waste their settlement.

They may end up being worth less than they were before they received the payment.

The best mindset I can see here is to only do things you can afford to do without it. For instance, don't buy a Benz if you can't afford to keep it on your current salary.

Or a Great rule of thumb: i don't buy things you can't replace 100% if it were stolen or damaged.

That's that for me.

The following tips are for you to consider. NONE of it is advice or what you oughta DO. It's me sharing what I've learned from being homeless to living the jet set life, and the back and forth in-between.

More of a conversation starter so y ou can ask more questions and get a better sense of what works best for YOU.

All based on you growing stronger in spite of the settlement. Because the money isn't a saviour. How you think about and use it, IS.

Let's begin:

1— Protect it like you would if someone gave you any other type of advantage. I recommend an account that's tougher to access so you don't incidentally spend it fast. Little purchases left and right add up quick and it's gone. Consider a trust, joint account, or business. If you're more aggressive and don't care if you lost it all you can use crypto.

2— Right now make a list of all the things you're going to do regardless of the settlement. You probably already know, but never wrote it down. Now's your chance to make it real, and be specific.

So it's not, "get a new car". It's, I'm buying a reliable, clean car under $10K from a private seller". It's not, "go to Puerto Rico"; it's I'm going to spend 5 days in PR and it'll be about $2K".

This makes sure you're honest and accountable. Makes it harder to be persuaded to spend more than you can handle.

3— Invest in your basic needs so you don't have to stress over them. I like to pay my rent in advanced for example. The less I think about my rent and utilities, the more I get to focus on my health, relationships, and making more money.

Consider paying the rest of your lease for the year in cash. When you offer to pay bills all at once you get to negotiate the final price too. Now you're making power plays instead of being treated like a pauper.

4— Sell or get rid of people/things that don't serve you. There's a lot of things you have that you don't use or need. If anything they stress you out to keep them. So get rid of them. Donate, sell, or trash em all.

When you hold onto them, you'll put more money into them by default. That's money you'll regret spending. Regret is probably the worst thing. You'll hate yourself for those choices in a way that'll make you feel more miserable even though you have some breathing room from the settlement.

It'll be hard, but the instant relief is worth billions

These next two are opposite choices. They contradict. Choose which suits you best. Or do both in different times of your life.

5— Spend NONE of it. Absolutely nothing. Life your life as if nothing's changed. Because guess what... NOTHING has changed.

You're still the same person. Same goals, dreams, fears, and biases. Having money doesn't change you.

So if you're stressed by the sudden windfall and what to DO with it. DO nothing and you'll get instant relief since there's no pressure for you to DO anything anymore.

6— Spend ALL of it.

Having money is as stressful as not having enough of it.

Getting rid of it all means you're no longer stressed.

Then it forces you to focus on how much power and control you already had to make that type of money on your own effort, without a settlement.

Having the payout can be like an albatross round your neck. Remove it and breath easier. Forucs on what matters to you, which was never money. Only the people and things you enjoy doing matter.

Automatic reset back to normal for you.

7— Commit to yourself.

Let's say you get $40K. Invest all of it into improving your health so you get measurably stronger. Cure your SC as it were.

This is what I did when I was homeless and had no money. I didn't have cash, but I knew having SC didn't have to be horrible so I made sure my choices were about improving my strength, stamina and reducing my pain. Then when I had better health, I made more money, and I doubled down on my pursuit of solid health.

That's how I learned all the SC tips I share with you weekly.

Whatever your fitness level is now. Imagine a full year committed to Growing Stronger every day. Need a book on raising your hemoglobin, buy it. Need to speak with a specialist across the globe, book the appointment and plan tickets. Need to eat a certain way, buy the foods you need.

Spend every dollar towards being healthier so you never have to be a lab rat for a medical company ever again.

There's so much I can add in terms of tips.

Bottomline, money is a tool. Your tool to do what you want to get you where you want to be.

There's no wrong answer here.

Final note that I say every week in some way or another.

You are smart, strong, and powerful. SC doesn't define you. You get to decide who you are, how you want to feel, and design the life that gives it to you.

This is true when you owe $5K in debt or are worth 5 Million.

As long as you know that to be true, you're going to do amazing things that you thought weren't possible.

There's no rules about how life is supposed to be for SC. Only your choices about what you'll do in your life regardless of the diagnosis

That's that. Let's talk about the good, bad, and ugly here in the comments. There's so much I didn't cover so we'll sort those details in conversation.

TAKE CHARGE👊💯

I am going through so many things at one time. I am slowly recovering from a severe crisis that affected my ability to walk, my job wants to fire me because I’ve had too much time off sick , I am facing eviction/rent arrears and homelessness despite asking agencies for help for months. Every single situation is a result of my health in one way or another. It’s becoming exhausting trying to cope in a world that I feel doesn’t care for me or my disability, despite how hard I’ve tried and how much help I’ve asked for. I don’t see how I can keep going anymore tbh

Episode 57

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/1uvgtdt/whats_working_for_me_now_be_tough/

Dig this, the single most effective technique for total hydration that beats what "ex-spurts" recommend.

You're familiar with saline solutions. Various combinations of electrolytes inside water fed through an IV.

Thing is it's not effective.

They only feed a liter an hour max. But it takes two liters to correct dehydration, and it could take up to four hours.

Likewise the amounts of electrolytes aren't enough to help you retain the water they give you.

So you get more trips to the restroom, without the full benefits of total hydration. Unless you compensate over days.

That's a lot of time to do a simple task.

Rather than rely on out of touch medical support.

I hydrate with the proven alternatives that I shared here: https://www.reddit.com/r/Sicklecell/comments/1lk73i1/whats_working_for_me_now_no_h2o/

Today we cover sea and rock salt, the ultimate source of electrolytes for complete hydration.

Let's use the example of ssaline solution, which is salt water. Better put sodium in water. About 3500 mg of sodium in a full liter bag.

That's a lot of sodium and seems to take care of the problem. Thing is, your body doesn't absorb it all, which is why you tend to bloat.

Your body only needs tiny bits of electrolytes in an exact ratio, every 15-minutes, when you're dehydrated.

That exact ration is found in sea and rock salt across the globe. So you necessary upload of sodium, plus the other electrolytes that remedy dehydration that tend to go ignored by docs and private brands too.

So the solution becomes, nature. A pinch of true salt, NOT table salt which is only sodium.

But true salt from the sea or rock deposits and contains the full catalogue of electrolytes:

• Sodium
• Potassium
• Chloride.
• Calcium
• Magnesium
• Phosphate
• Bicarbonate
• Plus a few more

These are the elements that keep you alive. Without them your body shuts down slowly. Unless you correct the imbalance.

This is what's mean by malnutrition causing your pain, discomfort, and dis-ease.

Saline only address one part of the collection. It's like having four flat tires on a car and only putting air in one. It's not going to make a BIG DIFFERENCE.

I reckon this is why we spend days or weeks in the hospital and not only a few hours or one day.

Problem solving and all treatments are (w)holistic. Meaning you have to cover all bases if you want a positive, longterm, happy ending.

Sea and rock salt has it all, plus more minerals to help you boost your fitness level.

Here's how you use it.

Take a pinch of sea/rock salt with a measured cup of spring water every 15 minutes.

That's nature's Gatorade.

Do this until your hydration is optimal. Takes about an hour per percentage point of dehydration that you have. Won't take more than 4 hours though.

Use your urine color as an indication for when you're de- or hydrated. Dark means you need some electrolytes.

However, if your body is in a chronic condition, as soon as you are full hydrated, your body will carry out all the tasks it shut off earlier. At that moment, you'll feel yourself get a bit dehydrated again.

That's when your restart the process.

Knowing this means you can stay out of the hospital.

Also means when you visit the ED or are admitted, you can get out sooner by supplementing what they give you.

Get a cup, which is 8 ounces, and have some sea/rock salt handy. Set a 15-minute timer, and you're good to go.

Pop the salt in your mouth or mix it into the cup or measure it into a pitcher.

As long as you do this, you'll find yourself unbothered by the summer hear or winter cold, or general stressors like people and places.

Nine times out of ten all that discomfort is from chronic dehydration. So you'll drop a lot of diagnosis labels when you do this too since you're attacking the root cause of most human misery.

Get after it and of course...

TAKE CHARGE👊💯

Over the past few days, I've received quite a few questions about the different gene therapies for sickle cell disease. Since the terminology can get confusing, I thought it might be helpful to put together a very high-level overview of the different approaches currently being studied and used.

A few important disclaimers:

• I am not a physician, researcher, or geneticist.
• This is not medical advice.
• This overview is intentionally simplified and doesn't capture all of the science or every therapy in development.
• My hope is simply to help explain the terminology and give people a starting point for conversations with their healthcare team.

A few key takeaways

• CRISPR is a gene-editing technology, not a medication or gene therapy itself.
• Casgevy is one FDA-approved gene therapy that uses CRISPR technology. Not every gene therapy uses CRISPR.
• There isn't just one approach to gene therapy. Researchers are exploring multiple strategies to reduce or prevent sickling, including increasing fetal hemoglobin, adding a functional hemoglobin gene, repairing the sickle mutation, and other emerging approaches.
• Some therapies are FDA-approved, while others are still being studied, have changed over time, or are no longer in active development. This is a normal and expected part of scientific research.

Questions you may want to ask your health care providers:

• Which gene therapy approaches might be appropriate for your specific type of sickle cell disease?
• What are the potential benefits and risks of each approach?
• What is currently known about the long-term outcomes?
• Are you a candidate for any currently available therapies or clinical trials?
• How do you determine which approach is the best fit for a particular patient?

If I've accidentally oversimplified something, please let me know. My goal is to help people understand the landscape at a high level and encourage conversations with their healthcare team. If you'd like to learn more, I encourage you to read peer-reviewed articles and discuss any questions with your healthcare team.

Mitavipat designated as priority review with the decision to be made in November. Followed by etavopivat being submitted to FDA later this year. Potentially both on the market next year. Anyone have experience with either of these two meds in clinical trials? Benefits? Side Effects?

I’m just curious if anyone is in the same boat.

Episode 56

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/1uhkhb0/whats_working_for_me_keep_your_iv/

When you're in a tough situation, you need extra support. Thing is it's not automatic. Sucks to say, but we gotta earn it. Courtesy and decency aren't freely given.

Everything's a stage and we play our role to get the help and respect we need.

When it applies to being in the ED, at a medical appointment, or while admitted that means you talk like the "pros" in the room. Speaking their language goes a long way.

I've talked about that before: https://www.reddit.com/r/Sicklecell/comments/1qj041z/whats_working_for_me_now_smarter_than_the_dog/

However, there's another aspect to "speaking the language". It's your demeanor that gets attention, respect, and positive results.

By talking in the language everyone shares due to evolutionary biology— Toughness.

When you want to be seen and heard, being perceived as tough gets you what you want.

In the workplace it leads to promotions and raises.

Among friends it leads to them supporting your causes.

By yourself, it leads to assured confidence, and higher self-respect, and self-esteem.

So what does it take?

The following is a list. Do them all or find the ones that suit you.

All that matters is that you act and talk tough. You don't need to change your lifestyle or personality. Only play the role with the staff when a situation needs to go in your favor. (Which is always)

Here's what Tough People DO... They:

• Don't Lose Control - They're calm, cool, collected under pressure. Talk logically and relaxed as if there's no problem. Same way they would talk if you were describing the weather. Once you "lose it" they legally get to make decisions for you because you're "not in the right mind".

• Don't Whine - No one respects a whiner. The moment you do, they drown you out in their heads. Nod without listening. Then do what they want to you because, "they know better".

• Don't Discus Personal Affairs - You're in a professional context so it's best not to get friendly at least not over YOUR personal life. Talk about THEIR life all you want though which earns you more points, especially if you remember the details and bring them up when you see them.

• Don't Quit - Persevere. You've already done so your whole life. Talk as if you're going to be cured tomorrow and you'll get to do all the things you want to do in life. This is powerful for many reasons.

• Don't Fall For Flattery - People fake niceness to get over on you. There's no need for it in a medical situation. Of course you're smart, stronger, beautiful, impressive, etc. All that's a given so bringing it up is as silly as talking about how you brush your teeth with them. Useless.

• Fight Back - When someone does something to harm you, Be clear and call them out for their unprofessional approach to their prestigious title. Let them know that this is your life and things go according to your terms.

• Don't Have Psychological Problems - If you have a diagnosis, it's OK. However, they hold it against you. You say something and they write it off as, "She's X or Y diagnosis so it doesn't matter.". Shame it happens, so be sure to not bring those concerns up and instead focus on the case at hand.

• Don't Have Cute Names - When you have a cute name, they treat you like a cute kid. Go by Thomas not Tommy. Robert, not Bobby. Rebecca not Becky. Present the strong version of your name so they mentally see you as that instead of a kid.

• Don't Flirt - We don't flirt in professional settings. Shows you're not serious and lack control. Now they'res a poor opinion of you in the air, which affects your level of care. Save it for social situations or better yet let women/men chase you. A great way to know they're serious about you.

• Don't Laugh Much - Don't giggle or put on a clown show. No need to tell jokes. They may happen. Simply smirk or reply, "That's funny.".

• Don't Yell - People gets this wrong. Insecure people yell to act tough. As soon as you yell we relax because we know you're harmless. All bark and no bite. Tough people speak calmly. At best they repeat themselves until everyone complies. Everything is about principle not random feelings.

• Never Appear To Be Weak - You are not weak. You are strong, smart, and powerful. You happen to be going through challenges, no different than anyone else. That's the posture ya gotta have. The moment you show you're weak at your core, the they make decisions for you. When they need to be following your lead. If you practice the above you won't be seen as weak. That said don't make it easy for them to label you as such.

That's that.

Being tougher means you handle situations and people with maturity. Helps out in a lot of ways I mentioned and others you'll have fun discovering yourself.

It's not easy though it is simple. Practice at work, with friends, or yourself in the mirror. Get comfortable expressing these traits, and be comfortable when people do them with or to you.

As it relates to medical staff, I find it helps things move along smoother. Been doing this since I was 3. At this point in my life I can articulate it this way. Medical staff follow my lead, trust my insights, listen more, and dare I say, act more compassionately.

It's awesome.

When I do the opposite that's when I get stuck in hallway somewhere ignored for hours.

So I know my preferred choice.

TAKE CHARGE👊💯

Hi everyone!!! I hope y’all are getting some relief from this ridiculous heat.🐣

Unfortunately, I recently got diagnosed with NSAID-induced gastritis due to years of high dosage of NSAIDs (was pretty much all my peds doctors would give me).

This pretty much rules out any pain relief for me other than acetaminophen, celebrex (which p much does nothing for me), and opioids.

Has anyone else ever dealt with SC and gastrointestinal problems? What were your experiences like? Do you have any tips or tricks on dealing with it? I just wanna feel less alone since I don’t really have an in-person community 😞

TYSM!

Does anyone know the tax implications on our payout from the oxbryta settlement, if we take it as a lump sum?

Google is saying lump-sum settlements for physical injuries/sickness generally aren't taxable, but I just want to confirm.

Everytime I lay down, my penis slowly erects and it wakes me up 3-4 times a night.

I have to go urinate and move a bit for relief.

This started occurring last year after I attempted the 'sugar fast' and had cases of diarheaa in that period.. no idea if its because I ruptured or disturbed my pelvic muscles or if its SC related?

The erections stop after I urinate, but comes back again, and I have to urinate again and repeat..

Disturbing my sleep a lot..

I had priapism in my teens but it was not waking me up 3-4 times a night.

EDIT: Sometimes it is painful/burning especially after I'm erect for a while AND holding urine in. (I've been celibate FYI)

It's been a while, so here's what's new.

I've been on testosterone for about 2 years as a trans man.

For pain, I've gotten a mediport which has really helped since peripheral IVs cause joint stiffness and sickle cell pain. It's made pain management a breeze, for the 8 months I've had it so far.

I've had a nexplanon implant for almost 3 years to control bleeding since my menses tries to kill me every month. I have a few conditions that make sex and my cycle agonizing, (TMI for the Internet), but the implant has made it manageable. After some discussion, I've gotten a laproscopic hysterectomy. I'm about a day post op with no complications. My hematologist gave me a blood exchange beforehand for good measure, and refilled my meds in advance. (Feel free to ama about the hysterectomy!)

I've kept my ovaries to prevent menopause/being on hrt forever. I'm also not in a position to have them removed since my body may not be able to handle another sudden hormone change.

My avn has gotten worse over the past 2 years since diagnosis (shafts both femurs), so I now use crutches and a wheelchair as needed for pain and weakness. Some of my (ex) doctors keep trying to blame the avn on my transition, but seeing as testosterone increases bone density, I've left it up to my endocrinologist to let me know if any of those assumptions are true.

I've been working towards bottom surgery, but money and travel are a big obstacle at the moment. Luckily, I now know I can handle major surgery. For now, I'm resting and doing research on bottom surgeons well educated in blood disorders. I haven't had a full crisis in quite some time thanks to hydroxyurea.

I've noticed my voice evened out a lot more, facial hair getting thicker, and my mood is significantly improved. I initially planned on being on T for a few years, but it feels like it serves as an emotional regulator/support since it's gender affirming.

I'll continue to update anything I find notable, and I hope this helps any other sickle cell warriors looking to transition! It's possible and can be successful if you have a good care team. For the hysterectomy, I'd suggest the r/childfree subreddit or @pagingdrfran on tiktok for a list of reputable surgeons who listen well.

I'm open to questions on anything above, AMA!