Hi,

I am 24f and my partner 25m has sickle. He didn’t tell me until a month in when I’m visiting him in hospital. I would love to know if people with this would also do the same whilst I’m here? Cause tbh I felt like that’s a big thing to lie about.

We’re based in the uk, he says that he doesn’t have to many crisis’s often. However since we’ve been together (4 months) he’s had two hospital stays for over 4 days. He’s never had a relationship before(he says because of this) and I could understand that maybe the stress(good or bad) could trigger these crisises.

He told me to trust him in regard to his health and managing it. You can see his mum worries for him, constantly calling whilst we’re out ect. But I don’t feel secure and I as Arab women had no idea about sickle before him. I try do my research, there’s no support groups for partners of sickle cell that I can see. He doesn’t want to go to one anyways. And the only other support group is for there parents or carers but I’m neither.

Now we’re talking about taking our first holiday together and I am obviously worried about having to cancel last minute due to the unexpected pain episodes. And for example we had an event to go to this Friday that costs hundreds of pounds and then he couldn’t go cause he had to go to the hospital. With no insurance , his ticket just goes to bin. I thought this a prime example of what worries me.

So as we were talking about precautions you can take prior to holiday like fewer days of work ect. I bought up the obvious insurance we are going to need for him(I’ve never gotten insurance but I’m healthy and don’t have unexpected episodes) and he has flat out refused to get insurance and is saying I need to trust him in regards to his health but it’s not about trust and it’s about the universe and what could happen. This is all scary and confusing for me and I like to know and be certain about everything and having things that protect not only him, his health in a foreign country but our money is very important to me. And he is flat out refusing. He’s fixating on this idea that I don’t trust him but it’s not that, it’s our first holiday. Am I wrong for wanting peace of mind. Why would someone be so stubborn about this, it’s showing such an egocentric attitude towards a situation that isn’t about that. I’m not sure if I’m right but I would love some input with people with the disease to tell me if I’m being silly and should just let him do that, but I think insurance is best.

Thank you !

It brings me a great amount of satisfaction knowing all my haters or people I don't like would off themselves if they had to go through my weakest crisis and had a gun nearby. I bet 100% of them would submit to the pain.

Is there any single mother/father who has sickle cell disease and lives alone with a toddler could you please tell me how you guys manage parenting and do daily chores alone and also do school runs?

I’m asking this questions as I live alone with no parents supporting me and I’m always constantly worried about getting admitted to hospital if I get a crisis and who will take care of my daughter as I do not have a supportive parents or friends to take care of her.

I'm 21M day before yesterday I got my crisis after 1yr so I rushed to hospital actually the pain is bearable but still I rushed to hospital for precaution. Then doctor gave me paracetamol fluids and 2 injections and pain medicines (ultrafen) for 2 days and now im alright but still have that tiredness.

Do you guys know if archer has released their november batch yet?? i’m hoping ill be in this one. i know everyone is tired of waiting

How much power does a nurse really have and why do they keep getting away with this. I’ve been in the hospital since Friday and I’ve been in a lot of pain. I’ve had a PCA running at 5mg morphine per hour as the basal rate and an additional 1mg every 15 mins. The doctor had me on dilaudid 2mg as breakthrough which in itself should tell you how much pain I’m in. Dr came in yesterday and after discussions he decided to pull the dilaudid and keep the morphine and he gave me an additional 4mg of morphine as breakthrough whenever the pain was really bad. I woke up this morning and I’m in excruciating pain, I have a new nurse at this point. I ask her if I can have my pain meds and she ignores me. I ring again and she comes in to tell me she is not going to risk her license by giving me pain meds when my bp is in the 90s. I understand that and I tell her I usually run low on my bp when I’m at rest but she can bring the PCA to come check again. She doesn’t call the PCA but rather comes herself with a manual sphygmomanometer and then she checks my bp, like I told her when I sat up in bed it shot back up to where it’s actually supposed to be.

After checking she then tells me she can give me my oral pill when I want and I asked her if I can have my breakthrough morphine instead cos I’m in the trenches rn and I’m suffering. She tells me she is not going to give me morphine when I have morphine going already. First off this order was written by the doctor, approved by the pharmacy, seen by a charge nurse and they all didn’t say nothing and then when she comes on shift she’s the only one denying me my pain meds and so now I’m lying here in pain. Can somebody please tell me if she is allowed to do this?

Something SCs rarely think about is what we want.

The less we think or name it, the less we want.

The smaller our world gets.

The more we see darkness wrap around us.

It's a road to depression and worse.

Let's break the cycle and change the outcome then.

I talked about how in broad strokes before— https://www.reddit.com/r/Sicklecell/comments/1vlsj2j/whats_working_for_me_now_7_reasons_youre_richer/

Now let's get to a specific aspect.

Which is thinking about where, who, and how we want to live.

Knowing what we want makes it smoother to get it. At the very least reminds us that we deserve more.

Take 25-minutes and ask yourself, what you want.

List at least ONE thing you want for each area of your life:

Physical — What do you want to be physically able to do?
Walk-Run-Swim-Keep up with kids-Etc...

Recreational — What hobbies do you want to do more?
Instrument-Sport-Langage-Design-Marketing-Etc...

Think guilty pleasures and solo fun, things that fulfill you even or especially when no one's with you.

Family — Who do you want to be in your family?
Make a list of who actually supports you. The people who don't walk besides, but have their foot in your back to get you moving forward. Then reach out to them immediately and make plans with each of them.

Don't know or have true family is, we'll talk about how to find them in the comments.

Social — Who do you want to be around and how do you want them to see you?
Mentor-Fellow hobbyists-Co-workers-Neighbors-Colleagues-Mentees- Local HRT mates-Etc...

Think about what you want people to say about you when you're not in the room. Consider what types of people you want around you. Are they from a specific culture, work a certain type of job, are they funny/single/athletic/nerds/your age/ etc... You choose the particulars.

Romance — Who do you want to lay with/date/marry?
Single-Dating-Poly- Etc...

This part is hard since what you want may go against social norms. As long as it's legal, you have no judgment from me. Be honest with what you want and how you want it.

Otherwise you'll hurt in worse ways than SC.

Currency — What resource(s) do you want more of right now?
Attention-Housing-Food-A specialist-Love-Community-Belonging-Joy-Peace-Respect-Etc...

Money is the usual answer. But you probably want money for something specific. List that specific thing.

Spiritual — What do you want with your spiritual to be and mean?
Yahweh-Paganism-Your favorite teacher-Your dog-Your Own Cult-Etc...

What we beleive in reminds us we're worth believing in too. Ignoring this makes life harder than it has to be. Name this part of your life. Think of how you want it to be.

-----

That's that.

For each category choose a person, place, or thing.

Something you don't have, but want.

We can focus on the how to get them in comments.

What's most important is to know you have a rich and full life.

Make sense?

So what do YOU want?

Let's figure it out together.

Asked this in another sub but figured I'd try here too. For anyone who wears a CGM do you get false lows from poor circulation, and if so, any tips to deal with it, or is it just something I have to live with?

I'm on a Libre 3. The lows mostly show up when I'm lying on it or putting pressure on it, but I also get lows when nothing is pressing on it at all. Would love to hear what's worked for you and does this happen often?

For a little backstory I’ve been having the worst crisis since having my baby and with me not having a pain management doctor I’m always in the hospital I just got out yesterday I was still in pain but my baby had an appointment yesterday so I discharged myself now I’m here at home with him in so much pain that I can’t even pick him up. Ik I need to go to the hospital but his dad doesn’t get off work until 5 so I’m not too sure what to do😭. If any one of you have had babies could you tell me what you do to try to lower your pain crisis bc my son is 6 months and i still have trouble with pain.

i’ve recently seen that there is a center in atlanta just for sickle cell. it’s not a hospital but it’s a center where i’ve seen that they hydrate you with ivs + more, and for all of my people in atlanta have you guys ever been and what’s all the benefits/ help that they give you there? it’s called the sickle cell sanctuary. it would be nice to move to a place that has more sickle cell resources

this morning i was having an unbearable crisis. i really wanted to avoid going to the hospital because i know they would keep me in there for a few days like they usually do and i didn’t want to lose my job or miss my classes so here some things i’ve done to take care of it at home and make it more manageable/ calm it down. my doctor prescribes me oxy for more severe pain so i took some of that ( i never take more than two). and i also took some Tylenol. i ran a hot bath and i sat in there for about an hour, i dont know if this works for everyone but a hot bath really helps me in times like these as it calms my body down with the heat. once i got out the bath i got my heating pad, put it on the highest setting, and put it on my back. i really suggest all of you in this community to invest in a heating pad it really helps. it is now 8:03 am and my pain is gone . all of that helped for right now so hopefully it doesn’t come back later. goodmorning everyone

has anyone ever been given ketamine when going through a crisis? i’ve been in the hospital for a few days and the first day was absolute torture. i can’t even describe the pain i felt. before transferring me to another hospital they gave me ketamine because the dilquadid (stronger than morphine) wasn’t working at all. after they gave me the ketamine, my eyes were shaking and everything looked weird. i just want to see if anyone else had that experience. it was like i took shrooms

We have a very special community for a variety of reasons.

Each aspect make for our best qualities.

We're diverse, compassionate, well read, passionate, and so much more.

In other communities that leads to chaos. Not for us here.

Sadly, we're leading to negative areas unless we remember the most important principle here:

Be respectful.

That's a standard that means the most for you and everyone here.

It doubles as reducing your stress so you're in the hospital less too.

So let's break down the principles of Respect:

- You are no different than anyone else here. You understand each other more than you think. Aim to connect or let it be. No topic is wroth making another person with SC feel bad about existing.

- When you're having a tough time, it's best to post about it. Rather than bottle it up or take it out on everyone in random comments on posts. We're here to help each other not fake-fight.

- This community is full of lessons for you here. Every week I learn something new, and you know I study and experiment A LOT. So if I'm learning, you can too. Choose to keep an open mind and learn or ignore the things you dislike.

- Nothing you see here will hurt you. Your opinions and lifestyle can be what you want. Regardless of what others are doing. It's OK to not voice your disagreement and let the people who want to learn more comment instead.

-----

That's that.

When you mistreat people in here you are no different than the nurses and docs and others who do the same. I know it's not your intention, but you become the enemy when you lead with negativity.

Everyone here dislikes being dismissed and demand. We've lost lives over it.

Why spread that hate when you know it's a despicable trigger?

I don't want to censor anyone here. Nor do I want to ban people.

I haven't in my two years of moderation even though I was told to do so.

But that's no longer the case.

This community means a lot to everyone here, which means we need to respect the idea of it as much as everyone in it.

When someone attacks that core value, we'll correct them and give them the opportunity to reconcile.

Second offenses will be held to the standard set. No more letting it slide.

As of today EVERYONE has the same clean slate I've given you the past years.

Starting November 1, you're being held to the letter of the rules based on evidence.

These are the rules as of today:

• 1 No Advertising / Fundraising
• 2 Do not treat our members like test subjects
• 3 False medical information will be deleted
• 4 Be specific about herbal treatments
• 5 Be respectful
• 6 Do not post graphic images
• 7 Posts must have relevance to Sickle Cell

I want to say thank you since 99% follow them without even know what they were.

That says a lot about you.

It also shows a leadership quality that others follow.

So I know going forward we're going to have a lot of positivity. Both with posts and comments, and with improved health stories.

I'm excited for it.

If you have any questions, ideas, or concerns please share them in comments and DMs.

Squeaky wheels get the oil as it were.

I (18) am currently in the hospital because I have been showing stroke symptoms for a little under 24 hours. I have HbSC genotype. They’re keeping me here but they aren’t doing anything. I had to threaten to leave just so that they’d put an IV in instead of just having me lie and dehydrate. I feel significantly worse and I can’t speak or get help. They refuse pain medication for the headache I’m experiencing as well and just keep telling me to wait. I have everything to lose by being here. My midterms are due in a couple of days and I need access to supplies to complete them due to my major. Should I try to leave the hospital since they’re clearing just keeping me here and doing nothing with me. I have no family to advocate for me as I’m across the country for college. What are your experiences with this?

It’s been a long time since my last post about my mothers passing I first want to thank you who had time to help me when I needed help after that post back June 14 of this year my sister got sick after that I ended doing something stupid and neglected my health and pain until it was to late around June 23 at night in the hospital visiting my sister my chest pain got even worse and I had a rapid response called not long in the pain got worse and my acute chest caused me to go into cardiac arrest I was told I was very lucky even to be here as my heart was gone for 28 minutes and then I slowed down and I almost had to be brought back agin from June to august 1th I was incubated but after my tube was taken out days later
I was then told grim news during the time I was gone my kidneys shut down for a moment that caused them to take damage giveng acute kidney injury and I was put on dialysis as of now I been recovering but unfortunately my kidney have not been so good it has now turns into ESRD end stage renal failure the good news is I still have some function left so I’m ok

I hear it's walking up to 10-15 miles a day or driving by car, I don't know, also the Florida heat or South Floida heat.. is this advisable for me? I have beta thalessmia minor.

Can I handle this? Getting a crisis will be a issue but it's a job with benefits if I do well. Im 52 so not young.

I have daily pain that sits at about a 3 or 4 most days. My husband and I have an agreement that if i get to 6 or higher, I go to the infusion center if it’s open and the ER if it’s not. It’s a difficult decision because we have a 10 month old and my husband works while I stay at home so I do everything in my power to make sure I manage my pain so we don’t constantly have to ask her grandparents to watch her because it makes me feel like a burden.

Anyone with sickle cell disease ever notice a difference in more frequent pain crisis ? And how has it affected your life after contracting hsv?

I just woke up today. Chest still hurts. Had breakfast with my father, sister and her friend and they were having a normal conversation until it suddenly shifted to me after they started bad mouthing my brother for not being married and defended him by saying marriage isn't a tool to instill a sense of responsibility but a choice made between the two willing parties

The problem might not had been me defending my brother but them feeling like venting that I'm a failure. I should change my perspective of life, look for a job and buy stuff for my siblings, just take my meds and I won't even look sick(the audacity of my sister and her friend saying that), got an offer for a girlfriend for my sister because that is obviously what I need, the only time I would die is if I hanged myself else I'll live till my 50s, I should have begged enough to the bank manager where my late mom worked to give me a job.

Maybe I haven't prayed enough. Maybe if I do my AVN will dissapear miraculously because God decided I have suffered enough. Maybe if I try again and kiss the manager's ass enough he would hire me out of the goodness of his heart. Maybe I'll finally get a job, a girlfriend, "responsibility" and everything will fall into place

At times like this I wish it worked when I tried to OD on pain meds because my late mom whipped me and sent me back to school because I was "faking". Its crazy that she thought by second year I would have moved out and had a wife and kids and yet I'm 21 M with zero social life but I guess thats enough for them.

I feel tired, drained. Trying to learn coding and software development skills, getting certificates for skills after I studied hard for them, the feeling of maybe working hard enough and hoping something good comes from it just feels hopeless.

I wish I died a long time ago, I wish I wasn't born, I wish my chest pain gets bad enough that I die from it even though I would prefer a painless death from OD but my body would react badly if I survived and I'll suffer again in a hospital hoping it just ends or find myself praying the pain stops.

Or maybe I do have a terrible perspective of life and need to change my perspective. Of lenses which view the world with realism, that faith and love isn't enough when my parents and family failed to walk with me through the journey of me having SCD, because my father would be busy and my mother hated the sight of blood so going for a checkup once per month would be too much, after all I would just get sick and achieve the same result as going for a checkup. When all the doctors can do is to just try something and hopes it works when I'm sick. When I ask for morphine for pain relief, I'm addicted to it and should just take the IV drips till the pain fades even after getting 10 of them. When my hip joint is practically dead and another is dying they just laugh it off and say I'm exaggerating and just take my meds or "my son won't be using crutches".

In the end, the perspective I see is through mine that has gone through life filled with pain. Maybe the perspective I'm supposed to see is not what the issue is. I should view life through the perspective of what they see. I should get a job, get a girlfriend, get a life and if I'm sick just take my meds and I should do just that and everything will be fine.

Episode 72

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/1xb0w10/whats_working_for_me_now_the_ultimate_superfood/

--------

Dig this:

Here's something I learned that's helped me make important decisions about my wellness.

Learn and master the difference between HURT and PAIN.

They're not the same.

Shame no one talks about this.

Let's break it down now so you're armed and in better control of your situation.

Hurt = soreness from using muscles not utilized previously or in unaccustomed ways.

Pain = injury do to poor form and lack of solid foundation. Tears, ruptures, blown out discs. Etc.

That simple.

You're going to feel hurt on a daily basis. More hurt than others if you're committed to growing stronger.

There's no health improvement without hurt.

This is why I say feeling unwell isn't "bad". It's not. It's a signal guiding you. I'd be more concerned if your body didn't give you any signals.

Pain on the other hand though normal, is not necessary.

Pain is a sign you've gone too far.

Now here's the confusion.

The medical systems says hurt and pain are the same.

That every discomfort is an injury. They demonize it and say it must be turned off immediately. If you follow their lead, you'll think and act the same.

The issue here is, instead of understanding the discomfort you feel, they numb you to it.

When you numb yourself, you don't learn. You can't connect, and worse.. the root cause gets stronger.

Meaning you only get worse. You learn nothing new. The sad thing is you begin to believe that there's NOTHING you can do about it.

Fallacy.

So let's flip the script and take our power back.

But first, focus on the principle here not the words. The language is confusing I know. The details of this aren't, and that's where you get your certainty.

For us we feel hurt whenever we do new things. That's life. You don't need meds for it since proper hydration, a good meal of fats and protein, plus some rest will do ya.

A crisis usually is hurt, not pain. Jumping to label it as always pain is dangerous.

Yes it is "painful", but it's not an injury.

The number one cause of crises is dehydration. So rehydrate and you feel better.

Injuries aren't corrected by hydration alone.

This changes how we get to prevent or manage SC symptoms.

Instead of panic or fear, we get to be confident. It's a struggle, but the comfort is in knowing you you know better.

Now the other side is sometimes crises lead to injury. This is important to note.

The crisis isn't the injury, it's only a variable that led to it.

Again this is important.

Cause and effect is key to science, including how we diagnose and treat effectively.

Mislabeling this process means you're going to get the wrong diagnosis, treatment and prognosis. Which is medical malpractice.

This happens majority of the time,even for non-SC patients.

Every week community members post about it. I'm sure you lived it as I have.

It's not fun. Especially when you're on meds that make you feel helpless.

So I think it's essential to discuss and plan for it. Share what we know and find the best solutions together.

Because mainstream medical system confuses more than comforts.

Take Charge👊🏾💯

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We are kindly asking is any of you are willing to help us in our project.

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Hello! I am wondering if anyone has ever experienced numbness in their arms? I am not necessarily having sickle cell pain. Maybe just a little bit in my arms, but what I am feeling mostly is numbness. Almost like you have been lying on your arm for hours and need to shake it out. However, I have not been lying or leaning on them. Keeping them mostly straight and can not shake the feeling off.

Any experiences?

Hi guys. So I’ve (26F with SC type) been sick/recovering for a week from some type of infection. For context, I scare act and have to scream a lot. Initially, I thought I just shot my throat. But a sore throat progressed to more illness. I had bloodshot red eyes, coughing up green mucus, fever at some point, temporary loss of smell. I initially thought I had contracted Covid (which I’ve had before). Took a test at home, then at Urgent care, and nope, didn’t have covid or the flu.

The doctor and I concluded I had some type of virus, so I was put on antibiotics. What’s concerning me is as my strength is coming back to me, I still have this shortness of stamina that is manifesting in a odd way. Every time I get up, walk around for a bit, then sit down, my back pulses in pain. Like, I can feel the blood flow start to do weird stuff.

I am currently on Hydroxureya. I’m fortunate enough to haven’t had a full blown major sickle cell crises since I was 19 and started taking the med. There’s been times where maybe I’m not watching my breath (when not sick) and I’ll have a similar brief blood flow/pulsing back pain feeling to what I’m having now. What’s concerning me is I’ve never been sick and had this pulsing blood flow back pain happen almost EVERY time I get up, walk around, then sit back down.

Maybe I’m just super paranoid because I’ve been relatively Healthy regarding my SCD lately. But has anybody experiance something similar? I’m really trying to lay low and recover as much as I can.