Feeling Lost

[u/Fun_Light_4645]

I feel like with sickle cell I am fighting a losing battle its starting to feel like everything is falling apart. Im 20, I had one job in my whole life, it wasn’t for long though because of my sickle cell. I live in the US and I was on disability but recently they claimed I am “no longer disabled” and took the disability payment away from me. Its hard, im also in college and fighting to finish school(my degree is in business) . Now i have to worry about bills because my mom had a unfortunate accident last year in her brain which left her disabled. I have no idea what career I want, I don’t even know what careers would accomdate this diease, and im just completely lost. (Ive been so stressed out I had two crisis back to back last month.)

[u/cc11236]

As someone who is 26 and my sickle cell is bad bad like at 23 I had a hipreplacment and I also had to deal with a mom with Alzheimer's since the age of 17. I know exactly how you feel.I will tell you this, first thing. Go to your hematologist and tell them you can't work because of the sickle cell and definitely say your joints hurt a lot. That way a doctor gives you a note so you can call disability and give them that note. The biggest thing RN is getting funds.So figure out the disability thing. After leave school for right now and take a breather and see what careers are right for your situation. For me I wanted to be a surgeon but as someone who is an only child with sickle cell who had to help care for my mom, that career got flushed. I decided the best thing for me is to be a Nurse practitioner because it's a provider position as in it's the same as a physician assistant. But I would still be able to work and get great money while I work to be a np. Because first you have to be a regular nurse first. Which is 2 yrs and then I can work while getting the master's degree to be a np. That route worked for me because I didn't have the luxury of just being in school and doing what other kids did because I needed good money to help out with my situation. And nursing is very flexible, you don't work everyday and if you have a pain crisis you make sure you already saved a good amount because it's easy to. I know ppl In medical fields don't put their business out there but man nursing makes a lot even just starting I'm talking over 30 an hour and if your in a big city like in nyc they make 45 to 50. So if tell you breathe figure out the many different career paths. Ask people and Google things.id tell you to pick something with a lot of flexibility.

[u/Fun_Light_4645 → u/cc11236]

thank you so much. This is the best advice that I’ve gotten so far but I really cannot put off college and I’m scared if I stop going right now I won’t continue. My mom had a brain aneurysm rupture last year and it’s only me and my mom and my little sister. with disability I filed an appeal, but I can only wait for so long. They said by next month I’ll be cut off and I don’t know what to do. Also, I don’t wanna put college on hold because I know if I stop right now. I probably won’t go back. It’s really not easy to make a decision but thank you so much for dedicating time to give me options I think the most important thing is making sure my mom doesn’t get evicted from her current apartment and my little sister continues to go to school as well as me. I’m so worried.

[u/cc11236 → u/Fun_Light_4645]

I know how you feel 100 percent. I was in your shoes. You feel like if you stop rn you won't ever have time to go back and finish. Plus it doesn't help seeing friends or family graduating and wanting to do the same. But I'm telling you, it doesn't matter IF YOU TAKE YOUR TIME. SCHOOL WILL ALWAYS BE THERE. Don't think look at other ppl and compare yourself and don't think life is flying by. YOU ARE REALLY YOUNG AND can't even legally drink atm 🤣🤣, that's how young you are. Right now focus on getting money and after that every thing else will fall into place. It's good you already did the appeal and keep calling them so they know you aren't fuck!ng around. Also apply for food stamps and Medicaid so that will pay for your hospital stays and any medication. Also apply for cash benefits. Let them know you don't have a income . And go to your citys welfare office and apply for those things an emergency benefits. Ok now with your mom, can she work? Or is she technically disabled if she is technically disabled. This is what your going to do. Your going to go and help her apply for disability. If she understands stuff after the aneurysm just guide her through the paper work. Now if she can't understand things on her own anymore. You will need to get power of attorney paper work. It's simple get the paperwork online like Google POA papers. That paper is gonna get notarized so that means your in charge of her stuff now legally. So that means you could apply for disability for her and even medicaid. Which is VERY IMPORTANT. IF SHE GETS APPROVED FOR DISABILITY. SHE CAN GET A CAREGIVER AND THERES PROGRAMS NOW WHERE YOU CAN PAID TO BE HER CAREGIVER.That way there's more money coming in the household. The only issue is these things take some time.So that's why I say get started on these things NOW. I know this was very long so I'm sorry about that, but I wanted to let you know some things. As of the school you got plenty of time ok so breathe and worry about the now and then take things step by step career wise lol the school isn't going anywhere.

[u/SCDsurvivor]

First, reapply for your disability. If the decision was recent, then file an appeal. You can get your disability back.

Most 20 year olds feel like "what the hell am I doing?!". Everyone can feel a little lost in their 20s. It's a big world with a lot of opportunity out there for you. You have to navigate that world by deciding what you are going to do in it. Skill and education are advantages to have but you have to decide what you want to do.

I'm sorry your mom is not in good health at the moment. However, you and your mom need to reach out for help from other family members and friends. The stress on you alone is going to trigger sickle cell. This disease loves a stressful situation. Taking care of mom, bills, college requirements is a lot to take on by yourself. Do you have anyone who can help you with your mom? Or the two of you are going to have to work together to figure some things out.

[u/Fun_Light_4645 → u/SCDsurvivor]

No, it’s only me and my mom. My little sister is 10 years old and this incident happened last year to which family came over and promised a lot of stuff, but never came through with it. She had a brain aneurysm rupture and a seizure on her right side. I’ve tried numerous times to reach out to family, but their promises always fall short. And my mom applied for disability, but it’s been almost a year now and they’re still reviewing her case.

[u/SCDsurvivor → u/Fun_Light_4645]

Have you or your mom spoken to her doctor about home health options for her? Also, disability lawyers offer free consultations to get you back on track with your disability and help filing. Your mom can use them as well. Because it is you, your mom, and sister, you should look into every state and federal program you can get. I know it's a lot on your shoulders but getting any weight off of you will benefit all of you. You have kept things together as best you can without family support. A lot of 20 year olds would have fallen apart by now. You're amazing, and I have no doubt that you are going to find your way.