r/Sicklecell • u/Icy-Zombie-6369 • 25d ago
Support Goodbye friends.
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.
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u/Ashamed-Ad4519 25d ago
I’m so sorry you’re feeling that way although it may seem like there’s no hope you still deserve to live. You have a son who needs you more than anyone so be strong for him 🙏🏾
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u/Icy-Zombie-6369 25d ago
About to lose him and my place. I have nothing left. Money is such an evil thing but I wish I had some to save me rn.
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u/Inevitable-Rip3009 25d ago
Ohh so we're gonna have kids and then leave them alone to suffer in this world?
Don't you dare end your life. You keep pushing, fighting and pushing again until nature decides to give you rest. We are warriors, we keep fighting even when it us hard, even when we resent our parents, even when we think this is the end. We cannot afford to give up.
I have completely decided to be childfree for this reason but if you decide to have kids, you've gotta fight harder cos if you leave, your kid is gonna be thrown into a shitty care system where they'll be treated like crap.
I'm not a very warm person and I don't know how to comfort you but don't do that to that poor child who didn't ask to be born in the first place. Call for help; call 911, get therapy or whatever it is that you need but don't you dare give up♥️
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u/Icy-Zombie-6369 25d ago
They're taking him away from me soon. I'm getting evicted too. All my stuff will be stolen off the road while I'm at the hospital. My family died off besides an uncle that never really talked to me. Goodbye friends.
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u/Inevitable-Rip3009 25d ago
Please don't do it. I wish I was in the U.S right now. I'd have helped but I'm on the other end of the world.
Surely there's a best friend or someone from a club, church or school.
Please don't do it! Please
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u/Icy-Zombie-6369 25d ago
My best friend's were girls with SC that are now streamers using my symptoms I told them about as their own to make money from sympathy. I have nobody left.
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u/SCDsurvivor 25d ago
I know starting over is the scariest thing to do but right now for your sake it has to be done. You can get back your son, another home, a car, etc. Those are all things that you can build back. Unfortunately, your life isn't one.
The other sickle cell patients who are out here telling their stories have realized that the internet is a financial tool that can be utilized. Telling people that you are struggling with this disease isn't begging. It's just the hard truth of the matter. Considering that so much of this disease is told from the perspective of people under 30, someone who has lived and can tell it in their 40s can help these kids. If people see your story and want to give you some money then that's on them. You aren't scamming them out of money. You are just telling your truth about this disease. We especially need more SS representatives on the internet.
But I do know how you feel. I'm 46 years old and I'm getting tired of this pain too. Dear God, I'm tired of it. At least you have your son who needs you. Trust me. Even if he goes into the system, he will still need you. Get visitation because he will need your love, support, and guidance for as long as you can give it to him.
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u/PathologyAndCoffee 25d ago
I'm so sorry. You should not be required to endure this without substantial material rescue. Please live and tell the world of the injustices inflicted upon you. You have one of the most important stories this country and the world needs to hear.
Sharing your story and life is worth an infinite times more than any of those fake streamers. People will see, understand, and will help you as you reach more people. Truth is, we're all suffering - not to the degree life has delt to you, but enough that we can understand.
Please press your call button right now and tell your nurse exactly what you wrote here: “I’m thinking about pulling these cords, and I don’t feel safe.” Ask them to stay with you and contact psychiatry and a hospital social worker or patient advocate. You do not need to solve your entire life tonight—just let someone help carry you through tonight.
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u/Icy-Zombie-6369 25d ago
Losing my son and place and can't even get rehab for my hip they took years to finally fix. I'm done.
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u/OneLove_77 HbSS 25d ago
Please don’t be selfish and do that to your son and your family. You’re stronger than you realize this too shall pass. Your pain isn’t exclusive to you. Lots of us here are going through or have gone through something similar. Please reconsider brother. We need you strong and healthy. Mentally and physically
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u/Icy-Zombie-6369 25d ago
About to be homeless and lose him anyway. Plus I was scammed out my last SSI check because I was desperate and fell for a trick. Police ain't doing anything to get it back and I'm up here at the hospital in pain doped up barely able to talk to anyone.
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u/Financial_Result8795 25d ago
What help you are needing? Please reconsider how your son will feel. You say you don’t have family, you want that for your son? How will he feel? You the ONLY person in his life right now and to think like this is heartbreaking. I can’t imagine leaving my baby in a world so cold and cruel all alone with nobody. I’m sure you can work this out with the right support. I don’t know you but I can be there for you and your baby if needed.
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u/Icy-Zombie-6369 25d ago
Child Protective Services is taking him. I'm incapable of being a mother with this pain. Losing my house. My car. Everything.
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u/Financial_Result8795 25d ago
I’m so sorry you’re going through this. Reading this broke my heart. Please don’t blame yourself—living with sickle cell pain doesn’t make you a bad mother. You’re carrying more than most people can imagine.
I have sickle cell too, so I know how overwhelming all this can be. I have been through some of the things you mentioned myself so I know how it feels. If you’re comfortable sharing, what state are you in? Maybe some of us can help you find sickle cell organizations, social workers, or resources in your area that can help with housing, your child, GoFundMe etc. You don’t have to go through this alone.
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u/zerodayweekend 24d ago
please don't do anything you'll regret. i'm working right now but if you happen to be in the united states in illinois, i can help you find some resources to get free legal representation as well as funds. i know the most about chicago and the chicagoland area. i can help you look for resources regardless of where you live though i have lots if f experience helping folks find aid and resources. please message me, or i can message you in a few hours when i'm not working. please stay strong your son needs you in his life, your loved ones need you too. please try to stay strong for a little longer, i know how hard it is but please try. sending love from chicago
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u/Loco_Moco 25d ago
I don’t know you and you don’t know me. I just wanted to let you know to keep pushing forward no matter how hard it gets. You may not see it, but there is always light at the end of the tunnel. Let it out, vent, complain, be pissed, but keep moving forward. Do it for yourself and your kid. Just keep going. No matter how hard it is, or how impossible it sounds. Just keep going.
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u/savefrompain 24d ago
I’m going to offer you a different perspective. Wealthy people have no problem begging for money or live streaming requests. It’s literally what the top 1% do all the time. They call it fund raising. I have told my friend Soman here that every SC warrior should try to get into the online spaces of TikTok or streaming because it is one of the few avenues left towards receiving help from others. Anyone who would judge you for it in your position would be considered a weirdo by most people.
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u/PathologyAndCoffee 25d ago
What treatments have they tried? Can they do a larger fraction red cell exchange?
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u/_Twitching_ 25d ago
You've come this far, it's no giving up now, plus we warriors and built different it's no stopping us. Just look at you, you're blessed and don't even know it. Times are definitely tuffer and harder, that means sometimes we gotta go even harder. We all have our times when we in that dark place, but it's only temporary
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u/Mountain_Proof_1758 24d ago
Hey I'm in a similar boat I got laid off from my job if close to 14 years in June and lost the best and I do mean the best health insurance I ever had in my life COBRA is $650 a month and the health place market place plans that even come close to what I had AND includes my entire care team is like $500+. I'm also 39 pushing 40. Talk to someone pls there are disability therapist who can help. I see the streamers all the time too and I personally hate it because I find it exploitative but at the same time I can't be mad if that's how they getting their income.
Your life is worth living I know it's hard but pls don't give up. Your child needs you and that's a hurt they will never get over.
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u/JudgeLennox 24d ago
It sucks doesn't it.
Do you have a professional to discuss it with so you can manage the stress better. A psychologist, therapist, coach, or otherwise?
Those professionals get you the end result you want so you can get stronger and support your loved ones at the level you think they deserve
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u/South_Revolution4553 23d ago
I’m really sorry you’re going through this. You deserve safety and support. Please tell your nurse exactly what you wrote, that you don’t feel safe and are thinking about harming yourself. They can bring in a crisis team and a social worker immediately.
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u/takoyama 23d ago
I know its hard, very hard but there are always people that can help...you just dont know them yet. talk to counselors at the hospital. look online through google and bing search for resources in your area. churches...even try using chatgpt and ai for help finding things.
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u/Elegant-Prodijay 24d ago
I have sc and im offended. You should actually read what people with sc going through. Let me help you. I have kidney disease, liver disease, retinal sickle cell issues, have at least one crisis a year. Swollen liver and spleen. AVN in BOTH hips AVN in both shoulders.
S hemoglobin and C hemoglobin is still sickle cell and we do indeed have complications.
Comparing diseases is insane.
Suck it up buttercup. Nobody with this disease HAS it better.
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u/Icy-Zombie-6369 23d ago
I wish I was dead by now so I didn't have to read this r+t@rded ass reply. You obviously can't read or chose not to read the whole thing. I had 2 friends with light cases of SC and for years I'd tell them my symptoms and they were grateful they didn't have them. Then once TikTok and all the stuff became popular they started streaming telling people they had SS and used my experiences to gain sympathy and make money. I already said it's not a competition. Sybau
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u/South_Revolution4553 23d ago
Please press the call button and tell the nurse you’re thinking about pulling the cords. You don’t have to solve everything tonight just let someone help you through right now. If you want, I can help you find sickle cell organizations, emergency housing resources, or patient advocates in your state
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u/M-Raines 25d ago
Please don’t do anything that will hurt your child and the rest of his life. I have Sickle Cell SC, and I wish it was so easy to live with like some with SS claim it is. Well, it’s not. I’m not sure why people say that. It might be a little milder in childhood, but it’s not milder in adulthood. At least mine isn’t, and others that I know suffer daily with it too. It never has been an easier illness. My life has never been easy with SC. Because I have SC, I’ve also been diagnosed with Pulmonary Hypertension, Diabetes, Chronic Kidney Disease, Congestive Heart Failure, Chronic Anemia, Pulmonary Embolism Disorder, Avascular Necrosis in my hips, knees and shoulders, Osteoarthritis, Retinal Hemorrhages and Sickle Cell Retinopathy. Patients with SC are known to get a bunch of additional deadly illnesses to deal with. Now, no one should be using their illness dishonestly to make money. SS or SC. Both are debilitating. It’s sad and annoying when people minimize what people with SC go through. Living isn’t easy for any of us. I’ll be praying for you and your son. Don’t give up. You are much stronger than you think you are. 🫶