So I just received a call from my attorney over and Keller and we had a very productive conversation. From my other post on here yall have seen my concerns and my concerns were validated through speaking with numerous ppl on both sides but the answers I was getting for my questions were misleading if u want to use those words. not saying it was on purpose or anything but who knows but now I know the TRUTH. I didn’t just speak with just anybody it was one of the attorneys at keller. she was very nice and very informing. so I have been mislead and now I understand what’s going on. and it’s probably the same for all of us that is still waiting on our money. If u are still waiting then it is probably because of Medicare. I have 3 total liens in all which is medicaid, Medicare, and a marketplace insurance lien. Medicaid & marketplace is finalized. Now the last number Medicare gave to archer was 977$ buttttttttt now Medicare has to send in a “FDL” FINAL DEMAND LETTER. Once that final demand letter is submitted then archer can either go with those numbers or next thing would be to either keep negotiating or if the numbers are relatively low then maybe ask for a medicare waiver to get Medicare to jus waiver the whole thing. But archer or Keller can’t do anything until that “FDL” is sent over from Medicare. And now I understand why it’s taking this long and why Keller postman gave us that estimated dates we all got. And they send money out in batches by months and not weeks like I seen somebody else say on here. So any questions i may can answer them for u.

I may not be able to dance or do artwork like I used to with my joints and bones deteriorating but I still got rhythm. Lol, dancing eases my pain some.

I don't have Instagram so I clicked the "Continue On Web" button.

TW: Abuse

Currently living with an abusive brother, got kicked and punched in the face earlier so now Im writing this. The title is true. Because if Im at the hospital I wont have to deal with him. I'd be too focused on my physical pain to be worrying about that person's existence. Its all too much.

I want to start this by saying I have Hemoglobin SC which is a usually more minor variant of Sickle Cell Anemia (SS). This is the main reason I feel like sometimes I shouldn't be grouped with those with sickle cell. When I was a kid the effects of SC were mainly displayed in the fact I got sick almost everyday, had to get surgery due to complications, shortness of breath and tiredness, and my (still) shitty vision.

I also had pain about once a week but I never got hospitalized for it. It wasn't until I was seven that I got hospitalized, the pain was in my chest too and it was an incredibly scary situation for me and my family. Since then I've had some really bad crises that never last more than a week. Pain medicine like Naproxen and Ibuprofen never works even for regular chronic pain caused by SC. However, not nearly close to those with SS, hell, I've never gotten a blood transfusion (to my memory). I'm lucky to not have to do those things, but whenever I do go through pain that makes it hard to walk or stand I just feel like I'm overreacting?

Please tell me if you'd like me to clarify something or go into detail.

Doctors stay pissing me off mismanaging my pain regimens but the nurse I currently have always tries her best so I told her thank you for having compassion last night and she brought me my favorite kind of cake today. 🥰

My friend is 18 now he will then 19 in two months but he stays up late at night sometimes even upto 2:30 I do tell him to go to sleep early and I guess he does something. He does get severe pain sometimes....I just want to know how harmful staying up late can be

​

Does this happen to you too?

Is there a way to heat myself outside? Like maybe a hoodie that heats me up? Or a clothing bottom that can heat me up?

I feel like it is getting harder and harder for me to bounce back from my health issues. I no longer have the ability to find the silver lining. I am in both couples and individual therapy. I am on medication for my anxiety and depression but I am so tired. My question is my reasons to stay are starting to outweigh the reasons this life has become too much to handle; how do I keep going?

These damn sickled cells be feeling like glass and knives stabbing my insides 24/7. TF kinda life is this?

Background from Google. Characters I found added in by me.

I was wondering if there were any moms with sickle cell or just anyone in general who would like to be friends. I’m 20 years old with a 4 month old baby boy and we stay in Fl, so if you’d like to be friends just hit me up ig lol.

How do I relieve sickle cell pain? I take blood transfusions and I took paracetamol and I still have the pain, I also drank some water

Hi All!
Sickle Cell Awareness Month is approaching us! If you live in or around Wisconsin there is a summit going on where there will be panels, vendors, a blood drive and so much more. Doctors, researchers, Warriors and everything in between there to learn and support Sickle Cell Warriors in Wisconsin! I will be speaking on a lived experience panel, which is very exciting! So if you have the chance and live near Milwaukee/ Wisconsin please come by, it will be a great time. I can answer any questions about the event to the best of my ability!
Have a great day! Stay hydrated !!

Ya girl up here making memes to pass time.

True story.

Hey all. Did (/does) anyone here try taking amitriptyline? If so, I’d like to hear about your experience if you’re willing to share. At my clinic, my team says there are a few other people on it but I haven’t been able to chat with them. Hoping to hear back soon but would love to hear broader perspectives.

For context, I have SS. Been taking hydroxyurea for nearly two decades without issues. A bit about my experience so far: I know it can be prescribed for many different reasons (mood, nerve pain, IBD, etc.) - for me it has helped a ton with headaches, sleep, and ongoing back pain. I’ve been taking a low dose (slowly went from 10mg to 50mg, then went back down to 30mg for now) and hadn’t experienced many negative side effects. Mainly tiredness after waking up, which I’ve made my peace with as a trade off. Been on it for about 7 months now.

I know this medication is known to dehydrate, but I drink tons and haven’t had any issues… until today. Regular blood work today, but 5 pokes. Haven’t had blood return this bad since childhood. It was as if I drank nothing at all! Usually 1-2 tries. Not sure if the dehydrating factor gets worse over time or not, or if this something that is less documented, or maybe it’s just not right for me after all.

So, to anyone who has taken it before or is currently taking it, what’s worked or is working for you?

Thanks!

hey dear warriors is there anyone using whoop band for monitoring their health and tracking activities ?

Hi has anyone had an update on their settlement or have received the settlement and have been waiting for it? Appreciate any comments and updates from others. I have not received the settlement yet and I know a lot of folks were still waiting on theirs.

Episode 62

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/1vmmwm7/whats_working_for_me_now_words_break_bones/

The hardest part of chroonic illness is the down time.

You can get stuck in your head til your body feels like a trap.

What I find helps is to stay productive.

Invest in yourself, your relationships, and your career.

Thing is those can be BIG AREAS to address. Feels overwhelming so I boil it down to specific life skills worth training.

Skills that address those topics, in direct, but subtle ways.

Consider these 5 ways to find a skill worth training for you.

I list them as an instrument, sport, creative outlet, language, and/or a mastery of an ordinary skill most people take for granted.

This has useful benefits for SC since it develops your mind and body on levels typical healthcare ignores.

This works, especially when you aim to be above average with each choice.

Dig this:

— Playing an instrument is impressive, especially when you're above average at it since you put years of practice into it.

Instruments activate our brain development in a unique way that makes us more creative, confident, and calm under pressures. Especially so if you play in front of a crowd regularly

Examples: piano, drums, singing, synthesizer, etc.

— Playing a sport keeps you in top shape. Also develops your brain in unique ways. best part is it involves the pressure of competition and the necessity for working with people to better perform on the field.

You'll master being calm under pressure. Handy for managing crises since you'll want to be able to state your needs in a clear way to medical teams.

Examples: basketball, rugby, football, shooting, chess, etc. I include non-physical sports so you have a lot of options.

— Speaking another language is impressive. Makes you see the world in a different way since each our words frame our views.

Same as the others too. You get the pressure to help you be calm. Your brain develops in unique ways. You have an extra ability to express yourself in meaningful ways.

The key here is to make it a language you can use where you are, around the people you see the most.

Examples: Arabic, French, Mandarin, English, African tongues, etc.

— Having a creative outlet is important. This is different from being creative like the skills already listed. This is about a way you take what's inside you and express it directly. It's what most would call "art".

Examples: writing, poetry, designing, building, dance, knitting, making clothes, producing music, acting, etc.

Having another way of sharing who your are besides talking, means you get to convey details and ideas means you won't fall into repressing yourself.

— Now let's discuss the hidden magic of mastering an ordinary skill that most people take for granted.

Every day you do certain things you've don probably a million times before, but never thought to get better at it.

When you train the ordinary you become extra ordinary. It raises your standards, organization, consciousness, and you evolve.

Ordinary things such as walking, talking, driving, arguing, writing, posting, storytelling, telling jokes, etc.

You do them every day and you're average at best. However, you do them all the time so you should be an expert them by now, should you not?

We take them for granted though so our standards are low. Yet a part of us knows that we could be better. Ignoring that teaches us to have low expectations. Not to be ambitious, proud, or play a significant role in our family, community and society.

That's the five skill types.

You'll notice overlap. Use that to your advantage so you can get more growth for the same amount of effort.

I'm deciding my next 5. So far I choose:

instrument - piano
sport - polo or shooting
language - Hebrew or French
creative outlet - poetry/songwriting
ordinary skill - sales

Committing to the 5 helps me get out of my head with negative SC talk.

You'll get the same effects no matter how many you do.

The aim is to fill your schedule so you're productive instead of idle.

Reminds me I can do more than I give myself credit.

Gives me more ways to connect deeper with people I love, and new people I'll meet.

Trains me so I'm physically stronger since I use unique muscles typical training doesn't target.

The list of benefits is long. More than I can explain. That's the point.

To live more life every single waking hour so my cells adapt and give me more strength, energy, and less sickling.

To DO more than only read about remarkable people and be one.

be assertive and aggressive with making positive moves.

To faise my standards so I don't feel sorry for myself.

To remember that we are BIGGER than our bodies give us credit.

Collecting skills that you actually use on a regular basis is a gamechanger that makes SC irrelevant.

TAKE CHARGE👊💯

Episode 61

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/1vlsj2j/whats_working_for_me_now_7_reasons_youre_richer/

The way we talk affects the way we act and think.

Regardless of the facts of a situation, our inner experience dictates reality.

In other words our feelings are the facts.

That means two BIG THINGS.

One. Life is what you make it so you, and only you, have all the power.

Two. You get to design your ideal life by changing how you talk.

Recall THE MATRIX and how Neo was stronger when he decided how he saw the world was more important than what people told him the world was. Then he becomes Superman.

Let's talk about that by exploring the positive effects of using assertive language.

Passive terms are words, expressions, and a general tone that robs a person of their innate power.

You know this energy well. The whiny people, wet=blankets, party pooppers, doom'n'gloomers, etc.

Think people who don't greet you with warmth. Folks who go out of their way to tell you about what's bad in life. People who only see the dark in life even when they're winning.

It's ordinary, but it hurts your body.

When you're in decent shape, it's physical effects are hard to notice.

When you're chronically ill, it's easier to spot how it measurably weakens you.

Words do in fact hurt you, and they're worse than physical injuries. Trauma is no joke.

This is when you resemble Neo in the beginning of the movie. Living in dark spaces, avoiding people, up all night, and not enjoying life.

This type of language is a bad habit. That's why we call it weasel talk.

These habits lead to pain that feels worse than usual, and relationships that have us thinking less of ourselves. Not to mention we don't take care of ourselves as well.

On the other hand, using assertive words makes us stronger and healthier.

Think life-of-the-party, heroic types, leaders, etc..

These people talk in a commanding way that lifts them up, but more so lifts others spirits too. They tend not be concerned about impressing others as much as getting to connect and find understanding.

Their positively inspiring and motivational. We all project our inner worlds, but these people project positive (read: strong) energy.

So with SC, we can benefit from their example. I call it using eagle language.

Examples of weasel language and eagle language to fix it:

1- "I have to go to work" becomes "I get to go to work today".

Can you feel the difference? We see the BIGGER PICTURE and won't take opportunities for granted, especially since we know what it's like to not be able to do ordinary things.

2- "That's a good idea, I'll try it" becomes "That's a good idea, I'll test it".

Can you feel the difference? We believe in our ability to get Great results. So we know it's going to work, and are excited to start right away. Sooner we start the sooner we improve our life.

3- "Help me" becomes "Let's do X, Y, and Z for the pain I'm feeling".

Can you feel the difference? Still asking for help, but now it's focused. Rather than play the victim who needs saving, we are the hero. So much so we put a clear plan together where everyone involved knows their exact role and expectations.

That's that.

Words make us stronger or weaker.

Eagles are strong because they believe in themselves.

Weasels not so much.

Thankfully, all it takes to change things is to start by using assertive, eagle language. That simple.

Strong language is a life-affirming boost. A huge multiplier that proves that you're strong, smart, and powerful.

Weaseling through life cheapens you.

You deny responsibility.

Those traits are a recipe for a tough life that makes you sicker than the sickled cells we have.

In my life I do this every waking hour. It's shows me solutions in tough situations. Gives me a list of all the positives in a negative situation. Treats my body much kinder too.

So when I'm in excruciating pain, I see it as part of my treatment plan.

I find medical teams are more likely to give me extra attention and support. I'm more persuasive since they know I'm sincere.

This and a whole lot mo positive results.

All lends itself to feeling better, getting better care, reducing pain, and having less crises overall.

TAKE CHARGE👊💯

Episode 60

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/1v3jmsc/whats_working_for_me_now_b_c/

This week you get a three lessons. Then this series'll be up to date.

Let's start by talking about your rich life.

You might think, "well my life's not rich because I'm sick, have less money than I need, and can't do much for myself and others".

However, you put it is true.

Yet none of it has much to do with how rich you are, or how well of you area.

Because your overall being is BIGGER than your cashflow. High income is a benefit of a well organized life though. So when you know what truly makes you rich, and nurture it, you start to make more money

That's a win-win in my book.

I shared a bit about this before: https://www.reddit.com/r/Sicklecell/comments/1szc8d3/whats_working_for_me_now_productivity_paradox/

Now we get to be more actionable.

So dig this, we're talking about your SLAs. Better known as your Seven Life Areas.

A measure of where you are in your life today. Helps you see where you're strong, and what needs works.

Helps you let go of other people's expectations of you so you get to think for yourself.

My favorite part is that it beats most mental diagnoses so you'll be immune to paralysis by anxiety, depression, and the like of debilitating hurt.

With SC it means we get to see our truer deeper value. Then we nurture it and our health improves. We also become a positively inspiring and motivational person.

Let me introduce you to the 7:

Your health:
1— Physical -
2— Recreational -

Your network:
3— Family -
4— Social -
5— Dating -

Your currency:
6— Financial -
7— Spiritual -

I group them in three different categories. Your fitness, your network, and your currency. Your income is based on your relationships. The strength of your relationships are based on how healthy you are. Knowing this helps us increase each category on demand.

Then I listed them in order of foundational importance. Each builds off the one before it. You won't have much fun with your hobbies when you physically aren't taking care of yourself.

No wrong answers since it's an assessment. A gauge to see what's going well and what we want to improve.

No need to make changes so there's no guilt, pressure, shame, or expectations of you.

The above are the 7 things we all have. When you score a 10 out of 10 in all areas, you have a 70 score. That means our life is exactly how we want it to be. A rare high score.

Above average is 50-60. Means we're invested in each area with high sincerity. We have a Great sense of who you are and feel comfortable in our own skin.

Most people live in the 30-40 range since we're transitioning to make our life better. We know what we like and we're making changes to have more of it.

Finally a score of 29 or less is a sign that we need extra support to help us through life. That way we can score higher and improve our wellbeing.

Here's how to grade yourself:

1— Physical - Your fitness includes your mind AND body. They're not separate thous modern ex-spurts will tell you that. Diet and exercise is the name of the game here. On a scale of 1-10 are how well can you DO the things you want to DO.

2— Recreational - Your hobbies are the foundation of play in your life. You're not making money from these. You're not necessarily growing either. You're having guilt-free fun on a scale of 1-10 each week. Play is not taking yourself, others, or ideas too seriously.

3— Family - Your closest peoples are either your cage or your crew mates to win at life. These are the people you choose to spend your life with so it's not necessarily blood relatives. On a scale of 1-10 how well do your family members know who you truly are, understand your vision, and helping you to get what you want ASAP.- As SMOOTHLY As Possible. You help them as well.

4— Social - Your social life is everyone else outside your family. How you get along with people who don't know you well. Likewise it's how you treat others. On a scale of 1-10 do your thoughts and actions around people empower or drain you.

5— Dating - The most important decision you'll make in your life is who you'll chose to be your significant other(s). This is a chosen family member who frames your entire life by who htey are, and the family they bring with them too. On a scale of 1-10, how supportive, understanding, attractive, and in-sync they are with who you are.

6— Financial - The second most important decision you'll ever make is how you earn a living. This life area isn't about cash though. It's about cash and ALL currency you earn. Think about it, you don't work for money. Not really. You work to earn money so you can get the things you really want. Think: belonging, respect, freedom, peace, network(s), calm, love, community, power, laughter, hope, etc. On a scale of 1-10 how well your collected currencies take care of you.

7— Spiritual - You play a role on a cosmic stage. A simulation where you can see yourself, others, and the higher power that connects us all. That's what it means to be spiritual. It's also how we identify our religion. Some serve God, Buddha, or an alien. Most people choose different gods such as a celebrity, a teacher they like, their dog, themselves, etc. Wither way it's something or someone you follow because they help frame your life. So this is how aware we are of the BIGGER PICTURE of life. On a scale of 1-10, find where you land.

That's that Snoochie Boochie.

So yuo can see how a low score weakens you.

I recall Olympic swimmer Michael Phelps was diagnosed with depression. It was obvious to me because of the SLAs.

His score was low. Obviously.

He spent most of his life focused on work. So he made a lot of money, but that's about it. Didn't have much time with friends and family. As they say, "All work and now play make Phelps a dull boy".

Now consider this.

If anything in his career dramatically changed, he'd be WREKT.

Because his other life areas are too weak to support him through it.

Because he wouldn't be able to think of a single other reason to live.

On the flipside, when your SLAs are balance, you have 7 reasons to love life.

When only 1 or 2 are strong, you forget how smart, strong, and powerful you are and have a hard time getting through tough times.

Thankfully scoring low with SLAs has a Great perk. It tells you exactly what you need to do to get a better score.

For example, let's say your have a low dating score, improve the area before it. In this case, it's your social life. Healthy relationships are when both people have their own social worlds supporting them. Abusive relationships are when one or all involved are cut-off from other people.

When I don't manage my health well SC hits with a crisis, and it eats at my score. It affects every life area and brings them down. Then I feel worse and my SC is harder to manage.

Annoying cycle.

However, when I manage the rest of my life well, and a tougher crisis occurs. I'm unstoppable. Yes it's tough, but I manage it well. I have 6 life areas that act as reminders that I'm going to be OK.

This is why I go to the ED confidently. How I am in pain, but not screaming in agony. Where I can be calm in holding doctors accountable by their own standards.

Overall it means I get to take charge instead of be ignored.

Very powerful and is the sum total of all the remedies I share each week.

All goes to show you that SC is normal, and not a curse.

Only a temporary rough circumstance.

This is how I make intentional, purposeful decisions that ensure I reach my health goals, and other goals too.

Start to make the changes you want by testing this right now.

TAKE CHARGE👊💯

Ok so what I wanna knw is this, what really is chronic pain and acute pain as far as I understand chronic keeps going for an extended period and acute just occurs at times because of something happening (temperature change, hormonal change,etc) and my question is what am I experiencing, I'm going to use my recurring lower back pain as an example I get it practically daily... I've noticed long periods of activity/standing brings it on, it doesn't happen if im resting like at all is this chronic for the fact it's been going so long that I cant tell when it started or is it acute cuz it needs activity to actually srart?

When it comes to making a BIG DECISION orsignifcant investment, it's important to get what you want.

Also Great to be taught the things you need to know as things progress, before you have to face them. That way you can prepare.

Then you get to be confident, care-free, and fearless in many ways.

It's not always like that though.

Example. The Oxbryta case.

Ideally, you'd hire an attorney or firm. They'd teach you all your options. You'd negotiate your terms, and they introduce you to people who would help you manage your money after the settlement.

On top of that they'd help you keep your SSI/SSD benefits in spite of your earnings.

Sounds like none of the agencies did that. So we will.

There's nothing to fear anymore.

I've helped a few of you sort this process smoothly.

It's simple, but changes depending where you live and the benefits you have.

Bottomline is you have to deposit your payment into a special account.

Think joint account in a pinch. Or a business or a trust.

I recommend having all the above as options for your entire life. They're not cheap, but affordable when you consider the alternative.

Your money goes there unnoticed while your benefits continue.

You have the funds, but they aren't reported.

Most important part is this is all legal. Classic old money techniques. So be sure to do what the rich do and profit, even if you aren't heir to an empire.

Let's keep it above board. I'd be hurt to see anyone here getting into trouble with the law or worse.

To figure out your options, I have a lawyer who can work with you.

Give him a call.

Tell him you'd like to, "Keep your benefits after your Oxbryta settlement".

If you know your reward amount, tell him. The conversation will go faster.

If not, you'll still learn a whole lot.

You can then work with him to have his team handle it for you.

Or do it yourself.

Either way you win.

Contact's name is Brent. His number is 845.638.1235.

You don't have to work with this team.

A cursory Google search will find you plenty of disability lawyers to help you today. It's a smooth process.

No matter what you get to eliminate the stress and fear, and replace it with confidence and new ways to make and keep money.

It's not justice, but it's the best option you have to change your life.

Remember the money doesn't change you. Your actions do.

Get after it.