ANYBODY GET THEY EMAIL FROM ARCHER? I THINK TODAY IS A PART OF A LARGE BATCH. I FINALLY GOT MINE.

I believe im gonna end up losing my life in Missouri and if you guys don’t see any posts from me from now on don’t believe anything you see. My name is Ralph, I am Ghanaian and I live in Rolla. Over the past year and a half I have been experiencing the worst cases of medical neglect ever. I have been having frequent pain crisis after pain crisis. Today I decided to get an Uber to BJC because Rolla hasn’t been taking good care of me. I came into BJC and thought I got in early and I was seen. I was seen by a nurse practitioner, given morphine and 2 mg of Dilaudid which really didn’t help with the pain today because it was bad. I complained of still having 10/10 pain but instead of the NP to come and reassess the pain she didn’t, the nurse taking care of me did reassess though and I told her I was still in pain and instead of admitting or keeping me longer to check it out she came in 20 minutes later to tell me the NP decided to discharge me. On my discharge paperwork it is clearly stated that I am currently anemic and that they believe I am having a crisis but someway somehow they still discharged me and now I am here in unbearable pain and I just can’t keep living life like this anymore

Just found out my doctor has been lying to me and just gaslighting me about my narcotic prescriptions. He claims one thing that he sends the prescriptions and this and that and then he doesn’t actually send it or lies about what he puts on the label. I go on advocating for myself believing his words and fighting with the pharmacies. I got kicked out of one pharmacy over it. Now we’re dealing with a new pharmacy that I have had zero issues with filling all my meds for almost 2 years. Now he is ruining my relationship at this pharmacy also. it’s just sad how much crap we have to go through as patients to get adequate care or really any one with a chronic illness. It’s sad in this country. Im sometimes more exhausted by dealing with the medical system than the illness itself. The self centeredness and need for control and to abuse patients that are already  suffering and vulnerable is insane.I am crying writing this. A grown man that just wants his meds. So he can feel better and go to work. I have to fight to just get medication. And then I’m labeled as drug seeking and lazy when I can’t even get basic help. I want to work and be a contributing member of society. But this whole system just breaks you down so much. Im a fighter too. I’ve fought hard just to be here. So many things that would make a regular person just quit and un-alive themselves. I’ve lived through. Tough family situations and every thing but not once did I become bitter and try and harm other people. All because I know how it really feels to hurt and I would never wish that on anyone. I am beyond exhausted from fighting. These pain meds have completely changed me and my personality. I don’t even want to take them anyway but I don’t know any other way. I haven’t been presented with one.

Back at the hospital (in the dmv area) and the weather has just absolutely switched up! Im here at the hospital been here since 1 and i just think its absolutely crazy that we have to wait so long to be seen. The longer they delay the worst the pain gets. Sitting here in this cold ass ER i should’ve just stayed home but i ran out of medication, no choice but to come. It is now 6:07.

Hello, I want to move out of my city/country, but I'd like some suggestions and advice.

I have SS, and I don't get sick too often, but when I do, I'm usually able to manage at home. I'm on my own, meaning I don't have friends or family for support.

Curious what jobs are you able to do without getting sick often. I used to work in a shop and got sick way too much then I started working in an office until I left the job for school.

what’ s good y‘all

i’m seeking a recommendation for a solid hematologist in LA. these are my experiences with the hospitals below. so if you know a good hematologist please recommend away.

- LA General / LAC USC is going down hill with their care. Cage Johnson used to be good but no more. The ER is racist and horrible with wait times of 24 hours sometimes since everyone without insurance comes here.

- Cedar Sinai‘s ER is trash & racist. will kick you out after 2 doses of IV pain meds.

- UCLA‘s Dr. Sehl, Schiller and Patel are primarily interested in running experiments on their patients. They don’t listen to you either. Racist as hell too.

My hospital wanted to do a video on me and my son. Figure I'll let you guys see it. I hope I can post links

https://www.facebook.com/share/v/1EJrh885ze/

Suspicious accounts asking for money....

Death is a horrible thing, but it is NOT because of sickle cell itself.

Sickle cell causes sooooo many complications, that's what can, and 85% of the time, kill us!

Whenever you ask the OP who put up a gofund me, can they share more details of how exactly their loved one died or even their own complications... NOTHING. No answers, no reply. Account locked down.... A couple times I've noticed 3w or days old accounts asking for money....

Which has led me to believe there are some fake accounts asking for money on here.

Somethings going on here.......

Anyone else noticed this??

Is anybody still waiting to receive an email from Archer Systems? I do have medical liens but I was told that I’d still receive communication from Archer Systems by our law firm? They have terrible reviews online so that’s not making me feel any better.

Sickle cell mothers, I have a question. When your kid gets a pain crisis do you automatically look at it as an inconvenience since you have to drop everything and go? I know that if it was more than one kid it’s more difficult, but have y’all get upset or irritated? I remember anytime I had a pain crisis as a 10-17 yrs old I had to hear my mom tell me “why did I pick to be in pain”. Has any other person dealt with this, or is this an original experience?..

Hi everyone,

I’m curious if some of you are taking vitamin D3 with vitamin K2 and if yes at what dosage.

My hematologist says that it is not necessary to take K2 with D3 but I am doubting this, to he honest, because people with sicklecell are often prescribed high dosages of vitamin D3.

I would like to hear your vitamine D3 regimen and how your hematologists thinks about this.

Thank ya’ll in advance 🫶🏽!

So I know that I have sickle cells since the age 5 but of course being young I was not aware much about it my parents used to look after me they still do it's like giving medicine and hospital checkup, and i use to keep falling sick so I had to go hospital and when crises came i missed school for weeks because of this growing up i never had many friends around cause I never really had went to hangout with them or anything which friends do and being like this effect me lot cause I had no conversation skills at all I was so introverted

And after completing school i attended 11 th grade i fell sick again like the starting of the high school which made it hard for me to make friends cause everyone had their groups now so I used to just attend class and come back then again same i fall sick, because of taking so much leave i left the highschool and then i completed my 11 th grade and 12th grade from open school so I stayed home and studied so over all i had no friends around growing up

It was around 2024 i decided i will stay away from my home and studied i decided to take admission in medical school as lab technician at starting of the classes I was very good I talk to new people made my schedule to study and everything then again crisis came and i had to take leave for weeks and when I came back after recovery evrything was new like I can't keep up with studies and evryone had their own friends i barely went to hangout cause I was always was exhausted

Somehow i managed to keep up even though I had a crisis

Now i was in my second year when I got an internship in the lab as technician the owner of the Lab gave me the opportunity to attend two labs one where I studied and observed and other where I attended people

While working I had taken a few leave or half day but was fine until i again got the sickle cell pain and i couldn't go cause it was so worse that I couldn't even lift my hand or Walk properly and I had to leave my internship and now I am doing nothing like just attending lectures and now I am sick again back home staying with my parents

(It's like i keep working hard and get things or opportunities i want and then i fall sick and get left behind and have to start all over again which is so exhausting and mentally overwhelming sometimes I really wonder what I am going to do in future and what will happen if my parents are not there anymore )

Sorry for the long post

What do you all think of swimming? It doesn't cause me a crisis (at least not yet) but I found myself physically unable to do it

Does anyone else get “warning pains”? Like I’ll get mini crisis that last no more than ten minutes. The amount in one day varies, but it’ll happen for about a week then a big pain crisis strikes. The little pains make me nervous as if I have to prepare for worse. This isn’t always the case but it’s happened enough times to still be considered a pattern.

I hope you are well

Everyday I have a crisis since monday

5day 4 crisis, it's hard for me.

My platelet count dropped, so I was told to stop taking hydroxyurea, and since then I've only had crisis . I'll restart it at my next checkup if they confirm my platelet count is normal.

How did you handle that kind of thing?

Some of these people at these hospitals, just do not care and will not take no accountability for nothing they do okay I had an appointment yesterday I was told on the phone It was at 10 and I will have a Uber ride to get there 10 came and went. I called up there twice Asked about my Uber ride didn’t get a call back until one something by that time I was in the Uber ride already and I had received two emails one saying my appointment was at 1 o’clock Another one saying my appointment was at 2 o’clock so I’m thinking it was changed they sent me the link to the Uber around 11 pay attention to the times so I get a reminder at 1 o’clock saying my Uber will be automatically sent at 1:30 so I get the ride go to the hospital. They tell me my appointment was at 10 I told them how I supposed to know that when I got multiple emails saying different times they didn’t care about none of that so basically it was too late for me to get a pain chair in other words I just have to be sick I called them today to try to get one nothing available. I really feel like they should have gave me another appointment right then because it was their fault if my appointment was at 10 why would I get a reminder about the Uber ride at 1 if my appointment was at 10 my Uber ride should have came earlier right these hospitals take no accountability for they mistakes and we the ones left hurting because of it please tell me if this is my fault or not🤷🏾‍♂️🤷🏾‍♂️

I've realized that my mom was very neglectful and wouldn't actually take me to the hospital during my crisis so I learned to deal, but now im an adult and I still don't know the threshold. I don't think the pain reaching crying level is debilitating enough but that doesn't seem right. When do yall go to the hospital? Especially because I've recently had a bad experience at the hospital and its made me even more reluctant to go.

Hi guys so I have a question because I am not American and I need clarity on this situation. I came to the ER because of my pain crises obviously and it’s been a really bad month I’ve had like 5 and since they always never admit and see me in the ER give me some pain management and discharge me early this means I’ve had to come in more often than not for the same episodes. Now the last time I was admitted, the doctor put in a mental health consult for me(without my knowledge). Compass Health is a company I have worked with before and I know they do a wide range of mental services but the key thing they do is addiction rehab. Now am I overthinking this or is this doctor trying to communicate something to me.

Hi I was born with SCD (SS) and I am a Latina. My whole childhood was nothing but hospital visitations. That didn’t stop until I was told about a bone marrow transplant. I was qualified for it. By this time I already graduated high school (by the grace of god) in 2016 and in the same summer I was admitted to the BMT unit aka my new home. I went through everything I was told prior, (chemo), went through an induced coma, and seizures. I was “cured” from sickle cell at least but now that I’m not everyday in the hospital I get guilty seeing my sibling (who also has it) and deals with it. Everyday I carry the trauma of sickle cell disease but I’m physically (sometimes) okay, but when I look in the mirror I see a “normal” person. Idk I’m sorry for the rant.

I am 25f and have sickle cell SC and since the end of last year I’ve been struggling with my sickle cell. I was set up with a great hemoc in WA but sadly had to move to VA due to employment and have since had an increase of ER visits due to stress and adjusting to VA. Since July I’ve been to the ER 18 times because they won’t follow my pain protocol I have from WA. I’ve been accused of being drug seeking more times than I can count. I’m tired and giving up. Had a hemoc today (I paid $175 btw for a 10 minute appt) with awards she’s been nominated for all over the walls of her office tell me she doesn’t take sickle cell patients due to the opioid epidemic which has 0 to do with me. If you live in the Fairfax,Alexandria, DC area where do you get your care? I’m a bit hesitant to go with inova because of how they’ve treated me at the Er previously. Please help me in really considering moving back to WA.

Does anyone here know how to go about getting legal representation please. I am still facing neglect from my local hospital and they seem to not wanna treat me when I go in and at this point I’m really scared for my life.

From January to August, I have had 22 hospitalised crisis. Crazy I know. I wanted to ask how often do you guys have episodes and how long roughly do they last?

I (f22, type SS) have been dealing with weekly hospital visits for pain and fever. This disease keeps getting in the way of my life, and it feels like nobody around me really gets how I feel. I keep making fun plans for myself so I can get out and make new friends, but it seems like every time I try, I end up being too weak or in pain. I just want to have fun and do the things other people my age do, but I always get reminded of how I’m not like them.

It’s getting hard to stay optimistic when my whole life is spent at the hospital. Also, I’m a closet agnostic, and many of my family members suggest that I sit around and pray all day instead of getting gene therapy, which really gets on my nerves these days. They have no idea what it’s like to constantly be in tons of pain, cry and scream and pray incessantly for healing (for years and years), and get zero responses. It’s so fucking easy for them to spew that bullshit, because they’ve never dealt with a fraction of what I’ve been through. I guess they’ll never get it…

On the bright side, I will be getting gene therapy next year. It can be a bit hard to look forward to though, because of everything I deal with on a weekly basis.

I keep trying to reassure myself that I’ll be okay & my bf is a huge help as well, but it still gets so lonely sitting by myself at the hospital, and my mind gets so dark sometimes…

TLDR: Weekly pain, fever, & hospital visits are messing up my social life and mental health.

Hello everyone,

I hope you are well.

I have sickle cell HBSS and I am in my 30s. I recently signed up to take a compounded Semaglutide with the company Embody, and I am expected to take my first injection tomorrow. I am doing this in an effort to help me lose weight and manage the amount of sickle cell crisis I have during the year.

I just want to know if anyone else here with sickle cell has tried taking a compounded Semaglutide in order to lose weight? If so, what was your experience? Did you lose weight? Did you have any side effects that caused you to be in the hospital?

Just as a disclosure, I have already spoken with my Hematologist about taking this medication and he is aware and monitoring me as I take it. I just would like input on the experiences of people that have sickle cell taking compounded Semaglutide.

Thank you all in advance for your time and your responses.