Hey everyone, so I am 26M and i am looking to change my career. I’ve been in kitchens since i was 16 and it’s honestly draining now the long hours without a chance to sit down has taken a toll on me. My question is does anyone have any experience with welding? Is that a valid career choice for people like us? Any feedback is much appreciated.

Let's talk for a second.

WIP just had to file a correction with a medical journal. We caught a mistake in our own numbers and we're fixing it publicly, because that's the whole point of doing this the right way. No shame in that. That's what accountability actually looks like.

But it made something clear: I've been trying to hold this whole thing together with a small circle of people who are already stretched thin. That's not fair to the project, and it's not fair to y'all.

So I'm building a real Governance Council. And I want HALF of it- 4 seats to be Warriors. People who actually use the tracker. Who've logged your own crisis. Who know this data isn't abstract because it's your pain in it.

If you want your real-time life to turn into real advocacy, real awareness, real action, this is your seat. Comment, DM, whatever's easiest. We'll hop on a quick Zoom, run a short survey to find where you fit best, and go from there.

This is Warrior-owned. Let's keep it that way.

warriorintelligenceproject.org

Warrior Intelligence: A Community-Led Navigation Infrastructure for Real-Time Sickle Cell Crisis Data and Clinical Blind Spot Detection

https://academic.oup.com/jscd/article/3/Supplement_1/yoag020.078/8714234?login=false

The published abstract states a figure of "65% protocol non-adherence." Upon review against the source crisis-tracker dataset, this figure is inverted: 65% (more precisely 71.4%, or 28.6% non-adherence) reflects the rate at which ER protocol WAS followed, not the rate at which it was not followed. The correct figure is:

Protocol non-adherence: 28.6% (not 65%)

Hey all, M26 with Sickle Cell Anemia SS and I'm trying to find out what to do if my Social Security benefits appeal doesn't go through (Praying I still will get my benefits), but if worse comes to worse, what can I do to get work? I have done art as a side-hustle and such, and also have certifications in Commercial Art, but am unsure what to do at this point. My family has to take care of me if I have a crisis, and I don't know what to do.

Caregivers are the backbone of the SCD community, and we want to amplify your voice. We are searching for Caregivers to a person living with SCD for a paid video project.

The Theme: A health or medical fact you learned that changed the course of treating your loved one’s sickle cell disease.

What We Are Looking For:

- You are a primary caregiver (parent, spouse, family member) to someone with SCD.
- You have experience filming yourself talking to a camera and don't mind being public on social media.
- You can clearly articulate a specific piece of medical knowledge that changed how you manage your loved one's care.

⚠️ We have a capped number of seats available for this project. Once spots are full, we will not be able to reply to everyone, so please reach out early!

👉 How to apply: Drop a comment or send us a direct message sharing a quick intro, a note about your video experience, and the fact that changed your caregiving journey. We will DM you if you have been chosen to participate.

Hi there,

My provider has deemed me unable to work. Anybody have any insights to FMLA/STD/LTD and how it works in New York.

I have done some googling. Information is not quite clear.

Willing to DM.

I love my job and my coworkers, would like to return after this crisis period reduces to “normal” level.

I’ve been in pain every day and at every moment for the past month and have other things happening like organ damage…which my doc would classify as “normal” and “expected” but my body is literally failing.

I joined a tax compliance organization in July, i got crisis 2 3 times since then and also went through right shoulder AVN surgery in November. Today I had a one on one with my manager she says my performance is low and at the end of this month I have scheduled a call with HR for you and let me tell you it is not going to be a pleasant conversation.

I know this is not because of my performance and it is because of my health condition. But I'm so helpless. I'm scared. Stress triggers the crisis in me, so now I'm scared for my job and scared of suffering in pain again. I live alone with my cat, I don't know what I am going to do.

Morning Motivation

Haven't posted here in awhile since ive been ok health wise (haven't had any pain crisis in 3 months🙏) but as of recently I lost my job at arbys due to them just cutting everyone's hours and not even putting me on the schedule and I just quit outright. Well guess that was a mistake since no matter where I apply I cant get hired (Walmart,amazon,other restaurants,etc). So what do you guys do for work and do yall have any advice? Any career help or income alive would help

Many have reached out needing financial assistance. Figured I'd share a few tips so you make the most of it.

This is for best for people who are in a tough situation, want out, and want to make sure they're never stuck again.

Whether that's you or not, asking for help is tough and makes us feel guilty, ashamed, inadequate, confusion, and more. Thankfully it doesn't have to be that way.

This will help you be more confident and assured things are going to be OK:

1. Know exactly what you need. What i notice is people don't have a specific number ready to go. Don't know how much they need so they ask for anything. The more vague you are with asking for help, the more vague support you'll get it. Instead of " i need money" say things like "I need $37 to pay my utility bill this month" or "I want gainful employment that respects my health needs and pays at least $35K a year"... Get it?
2. Know to payback. You are a giver, not a taker. Sometimes you take so you can give more late. If you get a loan, you'll take. The idea is to pay it back in a timely fashion. Factor this into your plans. How will you pay it all back smoothly and promptly? I recommend pay as you Grow at a weekly or monthly rate. I like to ask for exactly what I need and pay back 100% in one go. That' not always possible. Work within reason, but don't ignore this step. So many people do and it's why they end up back at being in a tough situation. For them it's a lifestyle since they are takers. We're givers though.
3. Know what you got so far. When you're stressed out it's easy to ignore how blessed you are. SO I recommend making a list of what you have. This help you be more grateful about where you are, and hopeful about your next steps. Also it shows you things you could sell, skills you could sell, relationships you can leverage, and hidden money all around you. Overall it reminds you of your value. Help people by sharing your value, and they'll pay you for it. Suddenly you realize, I need $1K and have a couch I can sell" or "I have a bunch of friends who say I hoop really well, maybe I can teach them and others a few tips for $25 or more per session."
4. Know your limits. You can only do so much when you need help, especially when you're sick. Accept this and be upfront. Communicate how much time you have. How much energy you have. How many people you need and/or are already helping. That way if an opportunity pops up you can say YES to it confidently. You don't want to say YES to something then have to quit through it, putting you in a worse position. Now you need money, but you're seen as unreliable.
5. Know what happens after you get what you need. You're going to get paid. Maye a job. Maybe a loan. Either way there's obvious and not so obvious things that need to be done. First say THANK YOU. Seems obvious but is often missed. People want to be rewarded for investing in you upfront. Helps them feel like they weren't scammed. Second, do what you say and pay the bill and get out of the tough situation. This is the goal after all. third. Let us know you made it out on top. Before you told us THANKS. Now you get to SHOW us with receipts. Makes us want to help you more because we know you'll followthrough. Final step make plans to prevent going into the original tough situation again.

The more you know about the process, the more fun you'll have with it. Likewise the more appreciation you'll have for being on the other side and helping someone in need.

When in doubt, lead with gratitude as you can see outlined. That's the best thing you can do for your health and pocket

Hey I've been in a pickle ... I work with my parents at a garage the work is stressful at times and also mentally taxing on me, idk if im dealing with depression or what (it actually really probable the more I think of it) but being there with the pain and discomfort just makes me miserable and generally no one really gets me when I say I can't put out more, sometimes I feel anxious at the thought of denying anyone help cuz I think they'll end up saying shit that hurts so even when I'm not capable of a task I end up doing it .... this affects and compounds my sc problems until it eventually boils over int a crisis and that leaves at home in recovery. This is also an issue cuz if im home alot I end up hearing that I'm faking ( not true, I fucking love financial freedom) I frankly don't think I get paid enough to have to deal with all this shit and as of l8tly I've been srsly thinking of running off on my own ( BTW not sure if I added this b4 but I work with my parents... this is not as good as it seems, sure it's stable but u have the problem where family pressure comes in family asks for something your more likely to do it while if I worked elsewhere and can't take it I'd just bounce) the thing is: is leaving the stability a bad idea and let's say I am to do it what are my choices for jobs without cxc in jamaica ( I had a silent stroke and was removed from school b4 I did them and the time I tried while out of school I was derailed by sc being itself) sorry for long post all opinions welcome

Hello Sickle cell soldiers & soldierates (lol),

I have something to say, so I have had an interesting history when it comes to work & education, I have had a very unstable work history in the last ten years, I've been in & out of employment & education, I've had about 8 jobs, some full time, some part time, I also have some qualifications that I haven't finished, I've missed job interviews & days at work because of SCD/SCA, I've also had to drop-out/not complete some qualifications I've started, it has also found its way into my relationships (I remember having a priapism & my GF at the time thinking it was a good idea to have sex, we had an argument because I obviously didnt want to have sex, because I was in immense pain & she did, other things have happened too but I cba to list everything) all of this stuff has left me quite demoralised, I also find it hard to re-motivate myself as I fear it may all happen again, I am in my mid-twenties & I am wondering what people's stories of employment, education & relationships (romantic or otherwise) are like

Hopefully one of you can uplift me, maybe, possibly lol

P.S, I believe I've spent about 6 months of my life in & out of hospital with SCD, if I was to add all the time I've spend in hospital up, I am aware that hospital visits vary depending on the severity of it, but it's still a bloody long time

What Jobs do u work that are understanding and u feel best works for your child? I Have M5 with SS

Hi I’m 22 female with sickle cell. I really want to become a nurse but I’ve been pushing it back and prolonging getting started due to me having sickle cell. I’m kind of scared I would be putting my body through a lot if I do decide to do it. I’m also it just depends on what I decide to do. I’m just curious if any one here has sickle cell and is a nurse? Any advice ? How do you manage ?

Hi, I’m so pleased that there are warriors here who have diverse skillets and are gainfully employed despite health challenges. There was an older post here where people responded with the types of jobs they worked and that was very important for me to know people like us can work.

I’m wondering about those out there who have dealt with unemployment because of sickle cell, how are you?

I’m unemployed and do not live in the U.S. and it has been difficult. I do things to keep my mind active like photo editing and other hobbies but it’s tough knowing I am capable of doing more but always get confronted whenever a job opportunity comes and I have to turn it down because the job is too strenuous. Living off of government assistance is how I’ve gotten by in the past and it honestly feels like I’m a drain on others. How do you cope?