I want my own life even tho I have CF but I dont know how. HELP!

[anonymous]

Hi everyone. I am a 28 year old male with CF/CFRD and some osteoporosis.
I live with my parents and I am SICK OF IT.
I have ssi which doesnt give me near enough to live on.
The problem is you are only allowed to make a TINY bit of money and still get ssi.
We all know that with CF you get sick and holding a full time job is very difficult.
I dont want to lose my SSI becasue even tho I have medical insurance, it still helps me out alot and if I do get sick and I cant work period, it will help me.
But how do I live on my own?
I don't know how this is possible. I have a friend that I was going to live with at one point in time but I really don't think he is interested in that now. Especially with a girlfriend. He also has two cats and theres no way I could live with those cats but he loves them like they were his children.

What I want is a chance to live life on my own. To actually experience having a life of my own. I feel so insignifigant and little.
When I go out with my buds I have to tell the ladies that I live with him so that I dont feel embarrassed and after that a relationship is impossible. What woman wants to date a guy who lives with his parents anyhow?

I feel as if my life does not belong to me. Everyday is the same to me. Sitting at my parents house watching tv, doing my meds etc. going to work out when i feel like it, then looking at what everyone else has and feeling like im living life looking out a glass window at everyone else. I would rather die outside trying than to live to be old and never actually live a day in my life.
My father is the type of guy who shrugs my problems off or suggests for me to do this or that... get a job .. but he fails to take the fact that I could loose my ssi. He never reads the facts about stuff and assumes he is right no matter what. He thinks I can make enough money to live and collect SSI. but that really aint possible.
Then he suggests that I move in with my cousin who I hardly know AND that lives a life that I really dont agree with and dont want to be around.

I just want to be able to TRY to make it on my own. If only for a little while. I know that cf progresses as you age and i am 28. I want to get out on my own before it is too late and I can no longer do so.

Do any of you live on your own? How do you do it? How did you get started at first?
I went to college but never completed it do to illnesses. I got so far behind I went for seven years and after I broke my back and had surgury I havent gone back. I know that if I stay in school that I will have no time for anything else.

Bottom line is that I want to live on my own or at least try to do so for a while.
I need help on doing this. I don't know how to get started.
I don't know how it is possible. I do know that I HAVE TO TRY. If I don't get out and try to make it at least for a while I know that when I die someday I will regret that I never lived life. I am begging for help. Not just a boost in confidence but some real help.
Some tactics and some way to approach doing this. I cannot just sit on my arse and wait for the day that I die. HELP me wake up from this nightmare.
I need hard tactics, I need help with a plan.. I need ALOT.
Can someone give me some real help? I would be forever gratefull.

M--28 male with CF and CFRD

 

[anonymous]

Hi.. I can completely relate.

I have lived on my own for almost five years and still struggle with the same things. I am also on SSI.

The steps I took to find independence may help you. First, I found a part time job. I made sure they were understanding of my illness and the fact that I may miss a few weeks at a time. I worked about 20-25 hours each week, which definitely cut down on my SSI check, but I ended up having more money (comparing the paycheck with the cuts on the SSI versus simply getting SSI).

Next, I found a decent living situation. I found a large house that a few girls I knew lived in. My rent was $150 a month, including utilities. You may not be able to live on your own at this point, that is something to keep in mind. Think about what qualities you want in a roommate. Also what was very important to me is that I would have a decent sized room to myself (for my stuff and o2 concentrator and vest machine, etc). I wanted to make sure I would have privacy when I needed, and very importantly, that I would have quiet when I was sick or needed rest. Perhaps living with a friend(s) who party and stay up being loud well into the night wouldn't work for you.

I suppose the third thing I did was really closely monitor my income. At one point, my copays on medical stuff got to be too much that I had to move back into my mom's house... which is definitely a feeling of defeat, but you get over it once you realize the necessity of it.

Every place I've lived, I've always made sure the rent was affordable. I've ALWAYS had to live with other people and we've managed by finding older, large houses to live in.

My advice for you would be to find a part time job that you enjoy doing and can physically handle (if you are well enough) and to go from there. I have found that if I don't have a job, I end up just doing nothing. Also, working when I have lived at my mom's house really helped me feel more independent because I had a lot of time away from the house.

Hope this helps...

 

[supermanfan]

Is is hard for some people with CF to have a full time job... but it is possible. You sound like a very motivated person, and I believe you can do it. Ask your parents if they can help you; there might come a time when your parents aren't around any longer, and you'll have to take that step. If they can help you get started all the better. I would think there are some programs for inexpensive housing, and the roommate idea is great. I too had a roommate when I moved out of my parents house.

You are right to believe not too many girls want to become involved with guys who live with their parents... but I believe for reasons other than your own. Some guys that still live with their parents at that age tend have issues with being on their own, or other issues that need not be discussed... you simply have a handicap that has held you back. So you might be surprised at the reaction if a girl is to find out you live with your parents given your situation. I hope that came out right. Sometimes I'm not the best with words <img src="i/expressions/face-icon-small-blush.gif" border="0">

 

[JennifersHope]

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[anonymous]

Jen,

Thanks for your post. I do recieve SSI now and I dont work. I was calculating how they deduct from earnings and basicly if I worked the SSI would be cut so hard that it would not pay for even gas, even if I worked part time. GAH the government sucks.
Basically they are saying they dont care how much I make or how little I can work they will take out 50 cents from every buck I make TOTAL which includes earnings and SSI. That cuts the SSI down so far that I might as well get a check for a couple of meals a month. I'm sure you know how hard working is as it is and when what they do they are basicly saying if I work they will take out what I work.

I think I will check into the housing thing. My dad keeps insisting that I live with a cousin and I guess I can do that. I dunno how it would work out but it is a start. I'd have to just talk to him.
All I know is I gotta do something. I'm sick of this. My parents don't think I have a chance in hell and my real father thinks of me as a child almost (at least it seems that way).
Sometimes I just want to pack up my crap leave the meds behind, go live life and do what I want to do untill I run outta luck. But I wont do that.
I just feel as if I live in a house and that that house is the only house in the world. Everyone else is outside and I'm starring at them through the glass pounding away but it wont budge now matter how hard I pound.
I dunno. I have my doubts about me making it given the work issue and the check issue.
I dunno. I want a life though. Right now I do NOT have one.
And when I am around others I feel insignifigant and pittied. I want to feel proud. I want to feel like I can accomplish at least a little bit. And If I do work for a while and I loose alot of SSI and later become sick... grreeeaat. then I get to go through hell again to get the help again. My SSI took me four years of hell to get.
I feel so trapped.
What really sucks is when you can tell other girls think that you are attractive, even more so than most of ur buds, but then you get to tell them the things that make you nothing compared to them.
I had a serious relationship one time in my life. It lasted seven years. But that was in high school when it started. That was the age when people thought about love and were young and could care less about these things I worry and others worry about.
At that age people think you can overcome anything. Now at this age women are worried about families, money, homes and everything else.
No im not saying that is wrong or bad, but what I am saying is that I feel I have nothing to offer them. At least I can't make them see what I have to offer from the start. And how do you start a relationship when you have nothing really at first to get someone's attention? Sure I think I am a good looking guy. But when a girl asks me what I do and where I live and I have to lie about it or change the subject, it kinda cuts the feet from under me and takes away all effort I give and all hope I have into even trying to start a relationship.
I may sound depressed but im not really. Sure I get sad but I have come to accept the way it is. What is horrible is that accepting has become worse than being depressed.
The lack of hope and anticipation in life is much worse than being depressed about life.
I honestly feel as if I don't have a soul anymore. Theres just this big empty hole.
And I'm afraid that if I don't do something, that is all I will ever be.

 

[JennifersHope]

If your packing up your stuff and leaving your treatments behind I am going with you.... I think we won't get to far though.....

.. Lots of ppl on here have great ideas.. so I am sure ppl will come up with even better ones then what I had ..I do know how hard it is to work.cause right now I am working and going to school full time.. I know that in an ideal world I would like to be able to stay home and focus on my own care, and do things as I feel well enough to do them.. I know I wouldn't be sick half as much as I am now..but that is a dream world and non reality......

I was just telling someone the other day that I wonder what the rest of my life is going to be like, feeling like it was hopeless and that I would just be fighting infections, one after the other.. non stop... and that I was feeling kind of hopeless about that, but nothing really happened to change how I feel, I guess I am just not thinking about it anymore...for now...so I do know what it is like to feel like you are on the stuck inside the house looking out.. I think we all feel that way at many different times in our lives... but then somehow the feeling leaves..even if it is just for a little while...

The thing that is important is to keep talking about it... keep getting input, and try to come up with some attainable goals.. Goals and my close family are the only things that keep me sane these days.....and I just take little baby steps with each goal I set....I know what it feels like also to feel like you have no soul left... I usually say my spirit is empty.... I don't know if you believe in God or anything, but I always ask God to fill my spirit... and to tell me my purpose...


My Yahoo IM is Jennifers_hope and my email is jennifers_hope@yahoo.com if you ever want to talk....

I have to get to studying, I have been avoiding it all day...

Hoping you feel better soon,

Jennifer

 

[wallflower]

Hey Anon,

This a situation that I like to put under the "Monkey Paw" file (Poe reference). I have been lucky enough to live on my own since college. My health has allowed me to work full time and cover my bills. I do get SSI. I do not get the check because of my income, but I continue to get Medicaid coverage, and should I lose my job, my SSI checks will kick-in again (like they did last year when I got laid off). I started off living with roommates which is definatly the most cost effective way to go, and now live on my own. It's not easy (especially when medical expenses need to come out of my pocket - SS has wonderful loopholes that I hope you will be fortunate enough to avoid), and there are days you will want to give up, but persistance is key.

I know when I got my first job (working at a ShopKo and making min. wage) and my SSI checks started going down - I freaked! But you find that things have a way of evening out, and are surprisingly doable (boy do I need a spell check on this thing!).

I don't know what kind of work you are interested in, but if you truely feel that losing the SSI is too scary right now, how do you feel about volunteering? There are tons of organizations that would kill for volunteers, and it could be a great way to get your foot in the door somewhere, or make some networking contacts for freelance or even housing opportunities (A friend of a friend who is renting dirt cheap, but doesn't advertise -- it happens). It also gets you out of house and gives you a sense of accomplishment.

Otherwise, I highly suggest talking to your employment center (every state has their own). I think they are highly underused as a stereotype for people getting unemployment benefits. I found them very helpful and they offer free assistance for everything you can think of. Also talk to your county health and assistance people - they will know of any additional programs or assistance that you could use for employment or housing.

Anyway, I have attached a few links for you from the SSA web site just in case. You may already know about these, but I figured it cant hurt to repeat:

1. The first $85 you make is exempt - and then 50 cents off every dollar above that is deducted (I know it's not a lot, but every little bit helps).

2. Hopefully the money you lose from SSI, you will make up with work. Contact them monthly with pay stubs - they calculate a yearly guesstimate for you (based on pay wage and hours/wk) in deducting from your check, but if you update your record monthly, they recalulate your earning potential and you get paid any difference a lot quicker.

3. Income limits to receive SSI are determined by each state. Because CF has such high medical costs, you can exceed that limit to an extent and still get benefits. If you were to make enough money that you stopped getting SSI checks, but then you quit or had your hours cut way back, SSI checks will pick up again right away without any extra paperwork (just call and update your pay/work information).

4. Your Medicaid coverage will continue even if you stop getting checks (because you are still disabled). Be careful once you get above the state income limit - they like to play "pull the coverage" game. That's when you need to know how much above the limit you can go (you'll have to call your local SS office and have them calculate it for you).

This link shows income limitation by state: <a href="http://www.socialsecurity.gov/disabilityresearch/wi/1619b.htm">http://www.socialsecurity.gov/disabilityresearch/wi/1619b.htm</a>

This link talks about earnings and SSI: <a href="http://www.ssa.gov/pubs/10095.html#part7">http://www.ssa.gov/pubs/10095.html#part7</a>

Keep us updated and best of luck!

 

[Diane]

Hi,
I live on my own and have for years. I have a part time job ( under the table) Im on S.S.I and also receive food stamps. There are also other things you may be able to get. I get something called "liheap" once a year, I cant remember what the letters stand for but it pays money to my major source of heat whether it be to the electric company, or to my oil company ( which ever i choose) to help provide heat for the winter. Then there is the "Cap program" ( customer assistance program) which gives me the first half of the month electric at half price. I also am enrolled in the "lifeline" service with the phone company. They automatically deduct $11.00 from the phone bill. And most importantly i am on the "section 8 program" ( housing assistance). I pay a very small portion of my rent ( less than $100. a month) and the housing assistance program covers the rest. If you have a social worker at your cf clinic they may be able to help you with some of these programs. Your S.S.I caseworker may also know of some programs that can help you also. If not, go to your local welfare office and they should know of all kinds of programs that can help you, whether it be financially, with food, utilities, or rent. I hope this has helped you some and i hope you can find a way to get out on your own. Independence when you dont think you will ever have it, is a beautiful liberating thing <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"> Good Luck, and keep us posted on how you do.........

 

[anonymous]

Hey

I can totally relate. Im 28 w/cf (-). I have lived at home for the past year, but before that I lived with my ex gf, and also a roomate at one other time. I know what you mean about living at home. My mother drives me nuts, and when I talk to the ladies, I hate having to say I live at home, so I eithor dont, or make up an excuse. I have worked on and off for years. But after a few weeks of working, im so exhausted and tired I feel like I have the flu. And most of the time I end up for an admission to regain strength. Im on what they call ODSP here in Canada, it isnt much, just enough for rent bills and a lil food. Right now im trying to regain resources and energy to take another crack at moving out. I find one of the best ways is to find a good roomate, or a good friend. Or if you have a gf that could work too. Try maybe also finding some cash under the table work so you dont have to claim. Not fair to the government, but hey CF isnt fair eithor. Im in night classes but they probably wont land me a decent job to get off ODSP. So try and ground your feet outside on you own, then work from there. If you wanna email me, my addy is chad_cortese@hotmail.com

Chad 28w/cf

 

[anonymous]

hi,

this is an odd question, but have you ever tried creating a "second job" that you can take care of from home, like selling things on eBay? i'm totally serious. i dealt with the same issues as you (still do to a certain degree, but am now 25 and thankfully have a full time job with a boss who is extremely understanding of my situation). BUT - i often think about what i would do if i just keep getting more and more sick (which is inevitable) and become unable to work, and i always feel like i could brush up on ebay skills and make some $ from my bed.

<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

Good to know I'm not the only one who has a hard time keeping a full time job now. I'm 24, and for the past 4 years was able to hold a full time job down and pay all my bills, rent, etc without the help of family or some sort of assistance. I am currently just finishing medical leave and am on unemployment, as I got too sick to hold my job down. But I am looking forward to getting back out there and finding some sort of parttime job. I'm thankful that I don't live with my parents still, and rather my boyfriend and I live together.

If anything start small, find casual employment, a part-time job, etc. A little bit is still a step up. CF is a hard disease to live with. Its challenging. Do what's right for you - what's healthy for you.

 

[anonymous]

I have worked my entire life, I put myself through school and received a BA in business administration, only to get sick and have to move back in with my parents. I am so depressed. I am 28 y/o and now have now life.<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

 

[ClashPunk82]

Don't feel bad, I never even had a chnace to have a job. I wasn't allowed in HS to have a job my dad was very education oriented and said there was plenty of time after HS to have a job, to focus on school. Well I did that then went to college to become a Surgical Technician and after I was done with school took about a month off to rest since it was a very hard program to get through. But I got very ill during that month and almost lost my life. Now I am on SSI and am being listed for a TX. I live at home and spend my days doing meds. I see my boyfriend on weekends and during the week try to go out with friends or just out to do something. I used to be pretty healthy and now I get so tired so quick and can only walk for a little bit before I need a nap. It's been really hard to accept. I feel like a failure and want to work but know physically I am not able to. But hopefully after my TX things will be a lott different.