How do you live?

[Aerose91]

WHERE do you live. How do you make money to just meet basic requirements, let alone medical costs?

 

[angee111]

atm, I essentially live off my mother and benefits I receive from social welfare, which I am currently receiving as a part-time student with significant impairment. Most people with ME/CFS who are unable to work even part time will either be having family members look after them (most often parents or partner, but not always) or will receive disability benefits. It can be a real hassle getting benefits, but it is often necessary if one does not have any family willing to take them under their wing. Some people with ME will unfortunately be under circumstances where they are forced to work or starve, perpetuating the do, crash cycle. If you are able to work, save as much money as possible as you don't know if/when you will be too sick to need it. Otherwise, applying for benefits and asking family members or even close friends for financial help would be another viable option. I hope you're not struggling financially too badly, it can be extremely stressful /:

 

[justy]

Hi Aerose - how you doing?

I live with my husband and 2 of my 4 children. My husband works really hard to support as all AND takes care of me, the children and the house. I also receive some benefits from the state - one lot because I cant work and am too ill to be rehabilitated for work, and some specially for people with high mobility issues to make their life easier (I use a wheelchair).

Its been really tough financially, physically and emotionally for us all.

For my treatment I fundraise - a friend of mine is currently raising funds for me by doing three frightening 'jumps' : the longest highest zip wire in the northern hemisphere, here in Wales. then 160 FT bungee jump in London, then a tandem skydive in wales again - he is really terrified of heights so its a big deal for him.

 

[PNR2008]

I've been on disability since 1990 but at 65 years it has turn to just social security this year. I was doing okay with occasional family help with emergencies but in 2008, I moved and my old house wouldn't sell. It was paid off but ended in auction and I lost about $100,000.

I love the new place (safe, convenient, one floor, many services) and have done everything to stay here with NO results. Every government help for people caught in the housing crisis, disabled, even with good credit rating has not helped me. It's disgusting, I don't meet this or that criteria, I'm too poor or pay my bills on time, have too high medical costs or the "percentages?" don't work.

My congressman's office got involved only to add another variable to the whirlwind of organizations saying "NO, NO, NO. I have come to the conclusion that if a deal doesn't help the banks then it won't help you. So much paperwork, so many calls, so REAL little help and stress and aggravation to make one sicker. I used to be an expeditor, with help from two people; we are all burned out now.

I pay my mortgage and maintenance off the top, if I'm lucky the utilities get paid but food and necessities are bought by my family on a weekly basis or friends will send food but all co-pays and meds go on credit cards. There's no money for emergencies and I've just become "numb" about everything.

I saw this exact thing happen to my friends who got sick the same time I did but never thought with my planning it could happen to me but all it takes is one false move and it's over. I'm bedbound and can't work, any energy I have goes to being a good neighbor, decent citizen and organizing my own health care. If I can help someone I will because it makes me feel like I'm still a human being, even that's dwindling. If help is out there for me it will come from an individual and not a bloated government agency.

There is not one thing about ME/CFS/SEIDS that isn't terrifying.

 

[JamBob]

I live at my parents house. They pay for everything even though they are not wealthy and the money they spend on me should really be going into their pensions.

There is a benefits (welfare) system in the country I live in but I don't feel able to deal with the stress of engaging with the system and engagement with the DWP would also require me to see NHS doctors who I'd rather not see as I feel somewhat traumatised by my experiences with the NHS. My parents have paid for me to get medicines and some private medical tests and healthcare etc.

 

[Tammy]

I am in the South West and live in an apt complex for the disabled and elderly............it's actually a pretty decent complex. I am on disability and get help with rent through section 8 (just got this recently and it helps tremendously). My medical costs are covered by Medicare and Medicaid so there are no out of pocket expenses ............only prescriptions if I have any. Also receive food stamps.

 

[sarah darwins]

I'm another one reliant on a very supportive and long-suffering partner, who also had serious health problems at one point (that was some year). We moved from Canada to my native UK last year. We still own a small house over there that we haven't been able to sell (housing slump in the province). We have a tenant in there but lose money every month owing to a mortgage, yet the fact that we own it completely discounts me from one of the possible state benefits here in the UK . And the fact that I haven’t lived here for the last 2 years disqualifies me from another benefit (despite my having paid tax here for nearly 20 years in the past — great, isn’t it).

For about 10 years, from the time I was first ill, I kept trying to run a small business and do freelance work. In hindsight it was a huge mistake. The returns were tiny and it definitely made my health worse. I should have been concentrating on taking care of myself. The first 5 years I was in total denial about my illness, despite being probably on the severe side of moderate. I could rarely leave the house but I kept trying to work several hours each day.

I’ve recently had some financial help from my parents, who are in their mid-80s, in order to get some private medical care. I feel I should be looking after them.

I am looking at trying to do a little freelance work again now, but I realise it has to be on terms I know won’t set me further back. I’m not even sure it’s possible but I'm trying to figure it out..

Having said all that, I know I’m lucky. It must be ten times harder for sufferers who don’t have a working partner or other family to help them. I tip my hat to every one of you who manages to cope with this alone. You’re heroic.

 

[justy]

Having said all that, I know I’m lucky. It must be ten times harder for sufferers who don’t have a working partner or other family to help them. I tip my hat to every one of you who manages to cope with this alone. You’re heroic.

Hear Hear!!

 

[Chris from Tampa]

Hi Aerose - how you doing?

For my treatment I fundraise - a friend of mine is currently raising funds for me by doing three frightening 'jumps' : the longest highest zip wire in the northern hemisphere, here in Wales. then 160 FT bungee jump in London, then a tandem skydive in wales again - he is really terrified of heights so its a big deal for him.

Wow, that is so cool. As much as this life can suck, it's really gratifying to see people do amazing things like your friend is doing for you.

 

[Aerose91]

As much as I hate to admit it, I'm homeless. I grew up in relative poverty and my parents can't afford for me to stay there. If I moved back in with them they would lose the house so I would never do that. I was staying with a couple friends who allowed me to stay there but after my sickness just continued getting worse they began to believe I was psychiatric and became really crappy people to live with so I took off.

I was rejected by social security because (before getting sick) I owned a company and my biz partner still pays me a small dividend of $800/month plus health insurance. It's awesomely generous but after medical bills, student loans, food, car insurance (i live in my car so I have to pay that), gas and cell phone bill (no computer) there's nothing left for rent. Apparently this is too much income to be allowed on social security so I can't get any disability.

Some friends of mine from the town I grew up in also threw me a benefit and raised a few thousand dollars for me for medical costs. It was insanely moving that they did that for me, but after all said and done it only got me 3 doctor visits and blood tests and I'm out

 

[Sushi]

As much as I hate to admit it, I'm homeless.

Do I remember correctly that you are now camping in the desert? If so, is this helping your symptoms at all?

 

[beaker]

As much as I hate to admit it, I'm homeless. I grew up in relative poverty and my parents can't afford for me to stay there. If I moved back in with them they would lose the house so I would never do that. I was staying with a couple friends who allowed me to stay there but after my sickness just continued getting worse they began to believe I was psychiatric and became really crappy people to live with so I took off.

I was rejected by social security because (before getting sick) I owned a company and my biz partner still pays me a small dividend of $800/month plus health insurance. It's awesomely generous but after medical bills, student loans, food, car insurance (i live in my car so I have to pay that), gas and cell phone bill (no computer) there's nothing left for rent. Apparently this is too much income to be allowed on social security so I can't get any disability.

Some friends of mine from the town I grew up in also threw me a benefit and raised a few thousand dollars for me for medical costs. It was insanely moving that they did that for me, but after all said and done it only got me 3 doctor visits and blood tests and I'm out

If you are in the US, SSD isn't based on need, it's based on disability alone.f you paid into SS you are entitled to receive.
Your dividend from your partner should be categorized as just that and NOT pay for work. I would talk to legal aide ( free legal service available to low income ) or a SS attorney that will take you on for a percentage of back benefits ) And if your partner is giving it to you as "pay" he/she could probably list them in such a way that would show the truth that you are not currently working for that money.
Of course, I am assuming US.
And of course, you would qualify for medicare after a year and could use the insurance you are offered as secondary.

Independent Living Centers (google for one near you) can also be of service, to help you find housing.
Also churches, large groups that help other illnesses will sometimes offer free advice ( depending on where you live) like local Cancer society, etc..

Sorry you are homeless. This is terrible. I hope you can find the help you need .

 

[AndyPandy]

My heart goes out to all of you.

Also wondering how @Dainty is going.

 

[Aerose91]

Do I remember correctly that you are now camping in the desert? If so, is this helping your symptoms at all?

I wasn't able to because of my problem with brain swelling at any altitude above 1200 feet. I ended up hospitalized and that was taking the lowest elevation route around the rockies. Still trtijg to recover from that. Palm Springs was the only option but it's much too hot during the summer. I'm not sure if ill be able to get there again tho after all this

 

[Aerose91]

If you are in the US, SSD isn't based on need, it's based on disability alone.f you paid into SS you are entitled to receive.
Your dividend from your partner should be categorized as just that and NOT pay for work. I would talk to legal aide ( free legal service available to low income ) or a SS attorney that will take you on for a percentage of back benefits ) And if your partner is giving it to you as "pay" he/she could probably list them in such a way that would show the truth that you are not currently working for that money.
Of course, I am assuming US.
And of course, you would qualify for medicare after a year and could use the insurance you are offered as secondary.

Independent Living Centers (google for one near you) can also be of service, to help you find housing.
Also churches, large groups that help other illnesses will sometimes offer free advice ( depending on where you live) like local Cancer society, etc..

Sorry you are homeless. This is terrible. I hope you can find the help you need .

Yes I'm in the US. And interesting you say that, I went through the SS process and when I met with a rep there he quickly told me that I make too much and that was that. I also was on Medicare but it didn't help at all with my costs be it functional doctors and offshoot labs most of the time.
I've tried churches and stuff also and most say there's nothing they can do for me. In fact they won't even let me sleep in their parking lots. I tried sneaking into a storage bin one night just to get some sleep and there were other homeless in there. I know there's no way that would have helped me. As of now I just find places to park my truck and hide for the night and get crappy sleep

 

[Tired of being sick]

I don't understand how your parents would lose their house if you would move back in

Cut your income down to $500 and your in..

Also the medicaid insurance is better than most expensive plans since it has $0 copay and
unlimited coverage on just about the whole 9yards..
prescriptions are now unlimited as well...

get a lawyer have him/her tell you what you need to do..,you will not get it without one..
People who are QUADRIPLEGIC get denied on 1st try..

Sorry about you student debt
Student loan debt is the biggest heist from the youth ever created.
80% will be in debt for the rest of their lives..

Biggest scam since the real estate bubble..

 

[geraldt52]

...I went through the SS process and when I met with a rep there he quickly told me that I make too much and that was that...

As others have said, you need to see a lawyer specializing in Social Security Disability. They will take your case without any upfront fee...they take their fee, set by Social Security, if you win benefits, from any back benefits that are owed to you. Don't believe a single word that any employee of Social Security tells you, including their "judges".

It is too bad that you've spoken to Soc Sec already without a lawyer, but tell the lawyer when you see one everything that was said between you and Social Security, and give them copies of any paperwork, if you still have it. I honestly don't know how the $800 that you receive needs to be handled, but again that needs the advice of a competent Social Security Disability lawyer, and me speculating won't help. It is tragic that the system operates this way, but it does, and it gives you no choice. Nothing involving Soc Sec is going to happen quickly, but every day that you wait is to your detriment. I'm so sorry for your situation, and wish you the best of luck.

 

[Gingergrrl]

As others have said, you need to see a lawyer specializing in Social Security Disability. They will take your case without any upfront fee...they take their fee, set by Social Security, if you win benefits, from any back benefits that are owed to you. Don't believe a single word that any employee of Social Security tells you, including their "judges".

Agreed and SS atty only takes their fee rom your back pay if you win. If you lose, they get nothing. It is worth pursuing again. Also, I don't understand how your parents lose their house if you live with them especially if you can pay some rent from your $800? Sorry if I missed this part. Best wishes to you.

 

[jeff_w]

I'm supported by my parents at this time while I trudge through the long and frustrating process of getting disability.

You said your parents would lose the house if you moved in. I'm curious how this could happen. It seems like maybe they've told you that you can't live with them, but you didn't want to say that on here directly? If that's the case, I'm sorry to hear it, and you're not the only one.

 

[Aerose91]

My parents are already on the verge of losing their house, i was being humble in saying "relative poverty" After my loans and medical bills are paid i see pretty much nothing at the end of the month and my being there, just the increase in utilities and food could put them over. Before I was sick I was sending them as much money as I could to help them out. My moving in there would be too much strain on them.

I guess I'll start with a SS lawyer. Thanks for the advice