In Need o Help Right Away

[anthro9310]

I have been on this site a few years ago and have decided to return because I am in great need of help, guidance and advice.

MY SITUATIONS:

I am a 29 year old female from California. I have cystic fibrosis, cystic fibrosis related type one diabetes, I had a double lung transplant 5 years ago and now have numerous transplant complications including 2 types of aggressive skin cancer, cataracts (now currently being treated), chronic pain, osteoarthritis and chronic pain. I have a college degree in anthropology, work as a freelance writer and in customer service and work as a volunteer for several different organizations.

THE PROBLEM:

I currently am on state disability because it is very difficult for me to keep a sustainable full time job due to my health problems. From state disability I get a little less then $900 a month. I am only allowed to make $1000 a month after this. Meaning legally between any work that I can get and keep and my disability income I can only get about #1,900 a month. IT IS LITERALLY IMPOSSIBLE TO LIVE ON $1,900 A MONTH!!! And now to make matters worse the car my parents were so amazingly kind enough to buy me 11 years ago is dying, literally I never know if it is going to start or not making it impossible to know if I will make it to work at all, when I can work. I currently live with my parents and need to get out. I am 29 years old and want to live on my own while I am still relatively healthy enough to do so.

THE QUESTION:

How are adults with cystic fibrosis supposed to live? How does everyone else support themselves? I don't have a significant other to lean on, my parents are retiring in a week and obviously have to support themselves through retirement. How am I supposed to get by or be any kind of independent. I am so terrified of loosing my medical insurance that I feel like I am completely stuck being on state disability. Does anyone know of any programs, resources, people, organizations I can go to for help/assistance? How can people in my position (with cystic fibrosis) keep fighting a disease when we are so busy fighting the system just for basic things. I was born with this, I didn't bring this on myself. I am someone who wants for very little, just a chance at a decent life. Right now I don't even feel like I have a purpose, just to live a life fighting a disease that will eventually kill me anyways.

ANY INFORMATION OR RESOURCES YOU COULD PROVIDE WOULD BE SO GREATLY APPRECIATED!! PLEASE ALSO FEEL FREE TO EMAIL ME AT anthro9310@yahoo.com please please help in anyway you can.

Thank you so much for your time

Annie

 

[Oboe]

Ignoring the fact that's probably a little more than OP was asking for, disability is different here in Florida. Unless there's something I'm missing, we don't have state disability. The only option is SSI (733/month max) and whatever you get after having paid into SS for however many years you have to in order to get SSDI. California seems to have its own state disability insurance. Though you're not wrong that cost of living is a lot more manageable here. I live on that $733 a month and about $140 in food stamps. No real trick to it, though, cheapass apartment and spending frugally. I don't have a car, but I live in a city so there's public transportation.

I have had similar questions, though. I would love to make a bit more money but between taxes and benefit reduction ((monthly earned income - 85)/2) it feels like it's not worth it to attempt to make money legally (not under the table) unless you're making like $1100 a month because you hardly keep anything after benefit and food stamp reduction. Then if you make too much for SS you can possibly lose medicaid. I can't do that at my health. It almost feels punitive to me.

 

[vbs420]

For the record, it's the same in Canada. Once on any type of social assistance programme, federal or provincial, it's nearly impossible to get off, or get out of perpetual poverty.

(and I'm supposed to feel sorry for refugees? Our own governments already ignore millions of us who are real citizens of our respective countries.)

Fortunately, thankfully, many years ago, when I was still young, a social worker made an impression upon me, and encouraged me to get an education for which my skills would be in demand so that I could get a job with a big employer who would have healthcare benefits that wouldn't deny me because of CF.

And though I listened to that advice, and got the decent job with health benefits and insurance, I still have issues accessing care and medications, although I'm relatively able to pay for them.

I suppose I haven't contributed much to the conversation. I wanted you to know two things: it's no better in Canada, and that others know of and appreciate your circumstance.

 

[jaimers]

it can be really hard to afford everything.
Do you utilize any of the drug co-pay assistance programs out there? Those have helped me a lot, especially for things like pulmozyme and zenpep. Perhaps break your budget down into basic categories and search for local, national, or medical/prescription assistance for each specific category. Does any of your budget go towards exercise? There are so many gyms these days that do very cheap monthly memberships but that doesn't always work for everyone but there are some CF specific organizations that offer grants for exercise programs or equipment that could relieve some costs in that category.
Perhaps search for any non-profits or churches in your area that have a community pantry where you can get cheap or free groceries.
How is public transportation in your area? Could you get away with not owning a car and renting one or using a service like Zip car for times you must have car transport? Is there someone you can carpool with to work? Or a community ride-share?
I would also contact the social worker at your CF or transplant clinic because they should have information on resources that can help you, or be able to point you in the right direction.

 

[static]

Fortunately I am well taken care of, but I know quite a few people with situations similar to yours. I also live in California.

First where about in cali are you located? I know in the Sacramento region they have section 8/housing choice vouchers. Basically you fill out the paperwork verifying citizenship/income and you can pick from a list of places with substitized rent(you pay what you can afford, sometimes as little as 100 a month, and the govt. Program pays the rest). Many people on social security qualify.

You can also sign up for food stamps.

I'd also highly recommend you talk to your local human assistance office and clearly explain your situation, they should be able to give you more resources as well. You might also try your cf social worker if you have a cf team.

Having CF is hard enough, I'm sorry you have to go through this. I also work and would love to be making more, but sadly I think some things in life we just have to accept and try to be grateful for what we do have. It is definitely not easy, and I am working through it too, but keep your head up and actively search for those local resources. Dealing with the govt. Stuff can be stressful so have some support ready but eventually it does work out.

 

[kgfrompa]

First i would like to thank you for starting this post! I live off of 880 a month they took my food stamps from 180 to 30 so i got to the point not to even fill out the paper work for the 30 bucks in food stamps I use the co pay assistance for some of my meds but let me tell you i am broke yes it is not even the end of the month and i am broke ,I have a garden in the summer to grow some food and do a little Canning to help me eat My parents have passed long time ago and i have no one Well I have a brother who just made it out of ICU and they removed his leg and then he had major heart surgery so It really is just me and what i get!
I dont have any advice other than look we are blessed to be born here where we eat and have medical care and a check what other places have are nothing to what we have so i try and think what can i do with my time maybe research yes you can make up to 2000 a year with out losing medicaid and that colud help you while you help others!
But It still is so hard not to be able to go to a grocery store and look at prices and i never eat out because the money is gone and i have nothing if i buy something i need i at least have something .
You are not alone we are blessed because we are strong Cf fighters and we understand what you are feeling i wish i could help you ! God bless Anthro9310 and all who posted

 

[carisabo]

i also went through this years back, im 30 and have cf/diabetes/lots of other crap cause of cf, but have not needed a transplant yet but i have come close my fev1 is coming back up with orkambi. But i also was on disability and it is hard, really hard. I went to school and got my Air frame and Power plant license and work for the military which has great insurance ironically. I know that in your situation there are other things going on besides CF so finding a job for the gov. would be kinda out of the question but if you ever get well enough i would consider getting on USAJOBS.GOV and applying for anything you can, federal blue cross is great. But back to SSI/disability they expect you, this talented person that did not ask to be born with this but has CF that is unable to work because of this to live off of next to nothing. I know there are alot of people that use and abuse our system that us tax paying citizens pay for trust me....im pretty right wing.....but this system is there for people like you and me and others that have issues beyond or control to be able to have somewhat of a normal life while we are here. I am also a christian and i believe in the power of prayer. I know it sounds silly but if you are a believer the power of God is pretty amazing. I used to not, i mean iv always dabled in praying here and there but nothing serious mainly cause my mom told me to. But i promise if you pray things will look up for you.... i will also be praying for you. I hope this helps in some weird way. If you have any other questions feel free to ask.

 

[aslong]

Hello, Amen carisabo!
KG- It really depends on where you live because there are food banks ect. to take care of at least that. Foodstamps are not paid if you are on state disability only then have your tried for SSI/SSDI? There is also GHPP for medical expenses. SSI I think pays a little more if I am not mistaken, depending on your work history. If you gett SSI then when you want to work they have a "ticket to work" program that will help you get training for another career.

Back to the foodstamps- It is amazing that foodstamps are not allocated to give more $ for those with CF who need more nutrition. I argued this once at the foodstamp counter when I was attempting to get assistance and I was told they only have increased allocations for HIV/AIDS. So, there is such a thing just not for CF.

If you let me know where in Calif I might have specific resources. I am in central California and I have been through it all... Section 8 is everywhere in california. You will qualify for a priority when the list opens because you have CF. You can also go to low income apartments as well.

Praying for you