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Hi everybody,I haven't visited with you all in quite a while. I was officially diagnosed in 11/07, went through a work-up for transplant in February of "08, issues found with my heart, remained stable, qualified for disability in 4/08, told later that year that I may need a heart as well as lung transplant, because the one particular issue with my heart puts me at the highest risk for fatality post-transplant, but my recent CT scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that like being yanked from one end of the universe to the other? For any of you who have remained stable, what have your physicians told you about the likelihood that because you have remained stable, that you might more likely remain stable longer than the predicted 5

years? Please share what you have been told with me and help me better understand.My income will soon be only my disability, which will allow me to pay my mortgage ONLY and nothing else. Does anyone have any suggestions for help out there? My faith is strong, for God is sufficient in all things. You all have been wonderful with your insight in the past, and I would be blessed to hear anything that you could offer that might lead me to some good resources. God bless you all on our shared journey.Jean, IPF, diag. 11/07

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Jean, I favor bank robbery......but, oh wait, the banks don't have any money either.

Please forgive my warped, dark sense of humor........it is a survival mechanism that I rely heavily on. I certainly do not want to minimize your very serious question.

jim

Subject: Currently stable but how do you live on disability income.To: Breathe-Support Date: Monday, February 9, 2009, 3:34 PM

Hi everybody,I haven't visited with you all in quite a while. I was officially diagnosed in 11/07, went through a work-up for transplant in February of "08, issues found with my heart, remained stable, qualified for disability in 4/08, told later that year that I may need a heart as well as lung transplant, because the one particular issue with my heart puts me at the highest risk for fatality post-transplant, but my recent CT scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that like being yanked from one end of the universe to the other? For any of you who have remained stable, what have your physicians told you about the likelihood that because you have remained stable, that you might more likely remain stable longer than the predicted 5 years? Please share what you have been told with me and help me better understand.My income will soon be only my disability, which will allow me to

pay my mortgage ONLY and nothing else. Does anyone have any suggestions for help out there? My faith is strong, for God is sufficient in all things. You all have been wonderful with your insight in the past, and I would be blessed to hear anything that you could offer that might lead me to some good resources. God bless you all on our shared journey.Jean, IPF, diag. 11/07

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Jean

Part one as to stability and the disease. So much depends on what form

of the disease and how the diagnosis was made. The often quoted 3.2

years or the 2 to 5 years is UIP/IPF only and even many live longer. In

fact, the latest numbers I saw said 30% lived over five years. With the

other forms of fibrosis and ILD's the life expectancy is longer. Often

also if they diagnose you with UIP and you outlive the expected time,

then they'll start changing the diagnosis. So, it all goes to tell how

little the numbers really tell us.

Part two as to living on disability. I don't know what your disability

income is or your mortgage, but I do know its tough for everyone. At the

same time I know that it takes a combination of two things. First,

seeking everything one is entitled to or qualifies for and asking for

other help that may be available. Second, adjusting, downsizing,

simplifying, even giving up our current housing.

In most places there are services with workers use to helping those

trying to survive on social security and pointing in the right

direction. The social security site also has mechanism for entering your

situation and seeing what other benefits you might be entitled to. Here

is the benefits screening tool:

http://connections.govbenefits.gov/ssa_en.portal

The first benefit is SSI or Supplemental Security Income. Then there are

state programs from food stamps to medicaid to others. Any program out

there that you qualify for you earned and deserve so go for it.

As to adjusting that can be simple or severe. It can range from

foregoing something small to moving into a different form of housing to

getting a roommate to a reverse mortgage.

>

> Hi everybody,

>

> I haven't visited with you all in quite a while. I was officially

diagnosed in 11/07, went through a work-up for transplant in February of

" 08, issues found with my heart, remained stable, qualified for

disability in 4/08, told later that year that I may need a heart as well

as lung transplant, because the one particular issue with my heart puts

me at the highest risk for fatality post-transplant, but my recent CT

scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that

like being yanked from one end of the universe to the other? For any of

you who have remained stable, what have your physicians told you about

the likelihood that because you have remained stable, that you might

more likely remain stable longer than the predicted 5 years? Please

share what you have been told with me and help me better understand.

>

> My income will soon be only my disability, which will allow me to pay

my mortgage ONLY and nothing else. Does anyone have any suggestions for

help out there? My faith is strong, for God is sufficient in all

things. You all have been wonderful with your insight in the past, and

I would be blessed to hear anything that you could offer that might lead

me to some good resources. God bless you all on our shared journey.

>

> Jean, IPF, diag. 11/07

>

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I'm asking the same question about disability. I'm in the process of applying. It isn't so much for my lung disease as that is stable and not horrible right now - thank God - but managing my PF along with vision, bowel issues, asthma, thyroid issues, bleeding disorder issues and the list goes on - well, it takes a HELL of a lot of work to keep me so wonderfully healthy. I'm missing too much work for doctor appointments, or for other symptom flare ups.

But I'm asking the same thing - How does one live on this?

>> Hi everybody,> > I haven't visited with you all in quite a while. I was officially diagnosed in 11/07, went through a work-up for transplant in February of "08, issues found with my heart, remained stable, qualified for disability in 4/08, told later that year that I may need a heart as well as lung transplant, because the one particular issue with my heart puts me at the highest risk for fatality post-transplant, but my recent CT scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that like being yanked from one end of the universe to the other? For any of you who have remained stable, what have your physicians told you about the likelihood that because you have remained stable, that you might more likely remain stable longer than the predicted 5 years? Please share what you have been told with me and help me better understand.> > My income will soon be only my disability, which will allow me to pay my mortgage ONLY and nothing else. Does anyone have any suggestions for help out there? My faith is strong, for God is sufficient in all things. You all have been wonderful with your insight in the past, and I would be blessed to hear anything that you could offer that might lead me to some good resources. God bless you all on our shared journey.> > Jean, IPF, diag. 11/07>

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Hello Jean and Dawn,

Frugally! I have been on disability for fourteen years. My savings ran out about five years ago. The thing that keeps me going is that when I turned 62, I was able to get a reverse mortgage. That way I got equity back and can live in my own home as long as I live. I to continue to pay my homeowners insurance, all utilities and upkeep. In Anchorage, I only have to pay property taxes until the year after I turn 65. I currently get a low income property tax deduction. There isn't much left over but I still live well. I clip sale coupons but only for the brands I use. I make it a game to see how much I can save. I make lists of what I will be needing and wait until it is on sale, usually at the end of the season, planning for the next year. I have permanent lists of things room by room, for the car and yard that I need to have on hand at all times so those purchases are guilt free, sale or no sale. If you are still unable to stay afloat, there are,

food stamps, adult public assistance and medicaid. If you do not own your home there is housing assistance where you only pay 1/3 of whatever your income is for housing and that includes all utilities. If you are disabled, you have priority for the housing assistance. There are also energy assistance programs even if you have housing assistance and your utilities are included in your rent. There is also the stimulus rebate of $300 per adult even if you don't have to file for taxes. Here in Alaska we have our permanent fund dividend each October where we get a share of the oil revenue profits.

I always celebrate holidays and have gifts for family and friends. It is satisfying to make the gifts myself. I bake goodies and make gift baskets from the things I grow. There are so many hobbies that don't cost a much. There is the library and all kinds of free activities to enjoy. I call two for one eating out coupons 'cheap thrills.'

I am kind of loopy tonight because I am just getting over a virus. I couldn't even walk on my treadmill for five minutes. I used to work getting people set up for independent living. I might be able to answer specific questions if you have more. I am sure others on the board have additional information.

Margaret

To: Breathe-Support Sent: Monday, February 9, 2009 10:06:17 PMSubject: Re: Currently stable but how do you live on disability income.

I'm asking the same question about disability. I'm in the process of applying. It isn't so much for my lung disease as that is stable and not horrible right now - thank God - but managing my PF along with vision, bowel issues, asthma, thyroid issues, bleeding disorder issues and the list goes on - well, it takes a HELL of a lot of work to keep me so wonderfully healthy. I'm missing too much work for doctor appointments, or for other symptom flare ups.

But I'm asking the same thing - How does one live on this?

>> Hi everybody,> > I haven't visited with you all in quite a while. I was officially diagnosed in 11/07, went through a work-up for transplant in February of "08, issues found with my heart, remained stable, qualified for disability in 4/08, told later that year that I may need a heart as well as lung transplant, because the one particular issue with my heart puts me at the highest risk for fatality post-transplant, but my recent CT scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that like being yanked from one end of the universe to the other? For any of you who have remained stable, what have your physicians told you about the likelihood that because you have remained stable, that you might more likely remain stable longer than the predicted 5 years? Please share what you have been told with me and help me better

understand.> > My income will soon be only my disability, which will allow me to pay my mortgage ONLY and nothing else. Does anyone have any suggestions for help out there? My faith is strong, for God is sufficient in all things. You all have been wonderful with your insight in the past, and I would be blessed to hear anything that you could offer that might lead me to some good resources. God bless you all on our shared journey.> > Jean, IPF, diag. 11/07>

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Hi, Jean....

I'm on Social Security and live alone, with a mortgage and all that. Because of my age, 66, I was able to set up my 401k IRA (what was left of it) to start drawing from it. I'd been putting off doing that, and wanted to work as long as I could, but now I can't work so I set it up to take as much monthly out of that as I need to get all the bills paid. Also in looking around I've found other help, like Angel Food Ministries. Most towns have that in a church someplace and they make food available monthly for about half-price. The have a web site that lists locations. No forms to fill out and the only qualification is that you eat. Utility companies usually can work with you, etc. After having worked and not worried about it all my life, this was all a little discouraging to me at first but do whatever you have to do.

Bill IPF Halloween '08 A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

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You need to cut down on lots of expenses.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: Currently stable but how do you live on disability income.To: Breathe-Support Date: Tuesday, February 10, 2009, 2:06 AM

I'm asking the same question about disability. I'm in the process of applying. It isn't so much for my lung disease as that is stable and not horrible right now - thank God - but managing my PF along with vision, bowel issues, asthma, thyroid issues, bleeding disorder issues and the list goes on - well, it takes a HELL of a lot of work to keep me so wonderfully healthy. I'm missing too much work for doctor appointments, or for other symptom flare ups.

But I'm asking the same thing - How does one live on this?

>> Hi everybody,> > I haven't visited with you all in quite a while. I was officially diagnosed in 11/07, went through a work-up for transplant in February of "08, issues found with my heart, remained stable, qualified for disability in 4/08, told later that year that I may need a heart as well as lung transplant, because the one particular issue with my heart puts me at the highest risk for fatality post-transplant, but my recent CT scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that like being yanked from one end of the universe to the other? For any of you who have remained stable, what have your physicians told you about the likelihood that because you have remained stable, that you might more likely remain stable longer than the predicted 5 years? Please share what you have been told with me and help me better

understand.> > My income will soon be only my disability, which will allow me to pay my mortgage ONLY and nothing else. Does anyone have any suggestions for help out there? My faith is strong, for God is sufficient in all things. You all have been wonderful with your insight in the past, and I would be blessed to hear anything that you could offer that might lead me to some good resources. God bless you all on our shared journey.> > Jean, IPF, diag. 11/07>

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Joyce

I'm at an advantage in having private disability on top of social

security until I reach 65, which is quite unlikely so I don't worry

about that time. However, I did go through the process of preparing and

budgeting " what if " I didn't have the private to continue and also " what

if " I do reach 65. I had to do that earlier to relieve my fears and

panic. But, I knew other people were doing it somehow so surely it was

possible.

I prepared budgets and I looked at resources. I even got down to the

point of knowing the final and most difficult decisions such as choosing

where to get an apartment, what size, etc. vs. being able to still

afford a car. However, once I did the research and did figure it all

out, it was still somewhat scary, but no longer panic provoking.

I did find out that a lot of the money I spend today, I would qualify

for assistance on. For instance, today I get no assistance with any

medications. If my income was more limited I'd save up to $5000 a year

on medications and if it were further limited I could save another $2400

on medical insurance. I found an apartment equivalent to mine (perhaps

even better) in a senior income restricted complex for $300 less or in

city supported complexes (and they aren't " projects " ) where I'd pay even

far less.

I still consider myself lucky at this point but do understand what

others are facing. It's not the lives we dreamed of. However, my

consolation is that the life I dreamed of wasn't likely to ever

materialize that way anyway. In many ways then the life we have may be

better than what we might have truly faced. The simplification of my

life has brought more than enough quality to it to offset the loss of

income. I live on far less and I'm far happier. I only get upset over

things like having to cancel the Orlando trip, but then I realize I

wouldn't even have the Orlando trip friends were I not here.

So, I'm not minimizing the difficulty of living on disability. What I am

doing is saying that once you work through it all and access every

benefit available based on your individual situation, you'll find that

it's more workable than it appears when you first think of it.

> >

> > Hi everybody,

> >

> > I haven't visited with you all in quite a while. I was officially

diagnosed in 11/07, went through a work-up for transplant in February of

" 08, issues found with my heart, remained stable, qualified for

disability in 4/08, told later that year that I may need a heart as well

as lung transplant, because the one particular issue with my heart puts

me at the highest risk for fatality post-transplant, but my recent CT

scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that

like being yanked from one end of the universe to the other? For any of

you who have remained stable, what have your physicians told you about

the likelihood that because you have remained stable, that you might

more likely remain stable longer than the predicted 5 years? Please

share what you have been told with me and help me better understand.

> >

> > My income will soon be only my disability, which will allow me to

pay my mortgage ONLY and nothing else. Does anyone have any suggestions

for help out there? My faith is strong, for God is sufficient in all

things. You all have been wonderful with your insight in the past, and I

would be blessed to hear anything that you could offer that might lead

me to some good resources. God bless you all on our shared journey.

> >

> > Jean, IPF, diag. 11/07

> >

>

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Jean,

Stability is a beautiful thing so congratulations on reaching this plateau. May you have a long long stay right there. From what I understand the likliehood of remaining stable varies greatly depending on the actual diagnosis. I have NSIP caused by an autoimmune condition so my stability very much depends on whether my auto-immune disease is active or quiet.

I will go out on a limb and say that the best thing any of us can do to prolong our periods of stability is to take absolutely excellent care of ourselves. Eat well, exercise as much as our condition allows, avoid stress and avoid infection of all kinds. There are no guarantees as we all know but we do the best we can.

As far as living on SSDI alone. It ain't easy and I don't even live by myself. I made the decision to share a home with my elderly parents in order to make things easier for all of us. This has HUGE drawbacks but it's working to keep us all afloat and living in a nice home. We all relocated to North Carolina from New York to get the most 'bang for the buck' from the fixed income that we have and to be close to the awesome facilities at Duke.

This would not work for everyone and I have days when I feel like it's not working for us but in reality it is working. Like anything else it's not a perfect solution but an attempt to make the best of less than ideal conditions.

We all come up with different solutions, it's all about what works!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, February 9, 2009 7:34:13 PMSubject: Currently stable but how do you live on disability income.

Hi everybody,I haven't visited with you all in quite a while. I was officially diagnosed in 11/07, went through a work-up for transplant in February of "08, issues found with my heart, remained stable, qualified for disability in 4/08, told later that year that I may need a heart as well as lung transplant, because the one particular issue with my heart puts me at the highest risk for fatality post-transplant, but my recent CT scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that like being yanked from one end of the universe to the other? For any of you who have remained stable, what have your physicians told you about the likelihood that because you have remained stable, that you might more likely remain stable longer than the predicted 5 years? Please share what you have been told with me and help me better understand.My income will soon be only my disability, which will allow me to

pay my mortgage ONLY and nothing else. Does anyone have any suggestions for help out there? My faith is strong, for God is sufficient in all things. You all have been wonderful with your insight in the past, and I would be blessed to hear anything that you could offer that might lead me to some good resources. God bless you all on our shared journey.Jean, IPF, diag. 11/07

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Jean... I'm really sorry to hear about your financial worries. It seems the majority of us eventually reach this point. We did.

Long story short, we now live in subsidized housing (based on income). A nice well kept complex but not like our nicer home with many amenities that we knew we had to sell.

Since you are on disability that tells me you are too young for S/S. BTW when you reach S/S age, your disability will change to S/S. I don't know if the dollar amount changes or not. I was already on S/S when I was dx and I was denied disability because I am already on one program.

Can you bring yourself to consider selling your home?

I know, I need to lashed for such a suggestion but the reality of your question is, we usually end up being our own resource in what ever way we can.

There are food stamps to help. Govt. programs always depend on how much $$ you make...

Are you able to look toward family? Even living with someone else or someone moving in with you?

As you can see, I'm not much help am I...

And I don't want to be gloomy either but we've been there and done that. Our income is pretty low and we still make too much $$ to qualify for what could help us.

For instance: housekeeper/don't qualify. Help w/Rx...don't qualify. So we pay for both out of our already meager income. Our daughter Lysa splits the housekeeper w/us but when I fell into the donut hole with Rxs last year we went through literally thousands that we had poked away for "retirement". HA! Housekeeper now comes in once a month instead of twice.

I don't remember details about you Jean, it's been to long since I've read regular posts from you but start right now in looking ahead for what your needs will be, I know that much. Make a list and check it twice and click 'em off as you (if you) find solutions and then decide what to do "what if"....

We've been there done that.

In what State do you live...how old are you?

Hang on kiddo, it's a bumpy ride and yes, God will provide for you in surprising ways.

We've been blessed with a cozy apt we can afford and now the rest just happens day by day...

Hugs and prayers.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Currently stable but how do you live on disability income.

Hi everybody,I haven't visited with you all in quite a while. I was officially diagnosed in 11/07, went through a work-up for transplant in February of "08, issues found with my heart, remained stable, qualified for disability in 4/08, told later that year that I may need a heart as well as lung transplant, because the one particular issue with my heart puts me at the highest risk for fatality post-transplant, but my recent CT scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that like being yanked from one end of the universe to the other? For any of you who have remained stable, what have your physicians told you about the likelihood that because you have remained stable, that you might more likely remain stable longer than the predicted 5 years? Please share what you have been told with me and help me better understand.My income will soon be only my disability, which will allow me to pay my mortgage ONLY and nothing else. Does anyone have any suggestions for help out there? My faith is strong, for God is sufficient in all things. You all have been wonderful with your insight in the past, and I would be blessed to hear anything that you could offer that might lead me to some good resources. God bless you all on our shared journey.Jean, IPF, diag. 11/07

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How do you live on disability? I:

Sold my house because I couldn't afford the mortgage payments.

Live with my kids and rent a room.

Look for every way I can cut corners- get free magazine subscriptions, only eat out at lunch and only with a coupon/wait for big sales to buy things I need and/or get things at the goodwill and graigslist.

Budget for fun (very important!) I can eat eggs for dinner or peanut butter for a few days and save my food money to go out to lunch with friends/ I can raid my sisters clothing discards for new clothes for myself and get a pedicure once a month instead of buying new summer tshirts, etc., etc., etc.

Last it is amazing how many small things you can do for extra money- collect cans, babysit an older child after school, drive an elderly person to their doctor appointments, sell all your old books, the possibilities are endless, you just need to be creative.

R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Re: Currently stable but how do you live on disability income.To: Breathe-Support Date: Monday, February 9, 2009, 11:06 PM

I'm asking the same question about disability. I'm in the process of applying. It isn't so much for my lung disease as that is stable and not horrible right now - thank God - but managing my PF along with vision, bowel issues, asthma, thyroid issues, bleeding disorder issues and the list goes on - well, it takes a HELL of a lot of work to keep me so wonderfully healthy. I'm missing too much work for doctor appointments, or for other symptom flare ups.

But I'm asking the same thing - How does one live on this?

>> Hi everybody,> > I haven't visited with you all in quite a while. I was officially diagnosed in 11/07, went through a work-up for transplant in February of "08, issues found with my heart, remained stable, qualified for disability in 4/08, told later that year that I may need a heart as well as lung transplant, because the one particular issue with my heart puts me at the highest risk for fatality post-transplant, but my recent CT scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that like being yanked from one end of the universe to the other? For any of you who have remained stable, what have your physicians told you about the likelihood that because you have remained stable, that you might more likely remain stable longer than the predicted 5 years? Please share what you have been told with me and help me better

understand.> > My income will soon be only my disability, which will allow me to pay my mortgage ONLY and nothing else. Does anyone have any suggestions for help out there? My faith is strong, for God is sufficient in all things. You all have been wonderful with your insight in the past, and I would be blessed to hear anything that you could offer that might lead me to some good resources. God bless you all on our shared journey.> > Jean, IPF, diag. 11/07>

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, So true, I used to just go buy anything my little heart desired BUT IPF showed its ugly self stole our money, stole my golden years with my hubby and left us with puter. I bought everything my grandkids wanted or needed until they were in middle school.NOW-- no shopping and have found I don't NEED anything. and my WANTS won't kill me to do without.I am shocked that we can live on what I used to blow in a few shopping trips.. hard way to learn.But I can say I am happier that ever without the shopping for stuff I don't need. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  How do you live on disability?  I:Sold my house because I couldn't afford the mortgage payments.Live with my kids and rent a room.Look for every way I can cut corners- get free magazine subscriptions, only eat out at lunch and only with a coupon/wait for big sales to buy things I need and/or get things at the goodwill and graigslist.Budget for fun (very important!)  I can eat eggs for dinner or peanut butter for a few days and save my food money to go out to lunch with friends/ I can raid my sisters clothing discards for new clothes for myself and get a pedicure once a month instead of buying new summer tshirts, etc., etc., etc.Last it is amazing how many small things you can do for extra money- collect cans, babysit an older child after school, drive an elderly person to their doctor appointments, sell all your old books, the possibilities are endless, you just need to be creative. R. (52)  Sarcoid/PF  3/2006   Carlsbad, California--- On Mon, 2/9/09, hkdawn <hkdawn (AT) yahoo (DOT) com> wrote:From: hkdawn <hkdawn (AT) yahoo (DOT) com>Subject: Re: Currently stable but how do you live on disability income.To: Breathe-Support Date: Monday, February 9, 2009, 11:06 PMI'm asking the same question about disability. I'm in the process of applying. It isn't so much for my lung disease as that is stable and not horrible right now - thank God - but managing my PF along with vision, bowel issues, asthma, thyroid issues, bleeding disorder issues and the list goes on - well, it takes a HELL of a lot of work to keep me so wonderfully healthy. I'm missing too much work for doctor appointments, or for other symptom flare ups. But I'm asking the same thing - How does one live on this?>> Hi everybody,> > I haven't visited with you all in quite a while. I was officially diagnosed in 11/07, went through a work-up for transplant in February of "08, issues found with my heart, remained stable, qualified for disability in 4/08, told later that year that I may need a heart as well as lung transplant, because the one particular issue with my heart puts me at the highest risk for fatality post-transplant, but my recent CT scan and PFTs show me stable and on hold indefinitely. WOW! Isn't that like being yanked from one end of the universe to the other? For any of you who have remained stable, what have your physicians told you about the likelihood that because you have remained stable, that you might more likely remain stable longer than the predicted 5 years? Please share what you have been told with me and help me better understand.> > My income will soon be only my disability, which will allow me to pay my mortgage ONLY and nothing else. Does anyone have any suggestions for help out there? My faith is strong, for God is sufficient in all things. You all have been wonderful with your insight in the past, and I would be blessed to hear anything that you could offer that might lead me to some good resources. God bless you all on our shared journey.> > Jean, IPF, diag. 11/07>

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and Sher and Beth and Peggy wrote such excellent answers.

Yes, you miss some of the things you can't afford but one can get the

essentials with some considerable work at it. Some of the things have

tradeoffs and none are perfect but you can be happy and comfortable.

Like Beth, I'm not going to be living alone after April, but living

with my ex-wife. As much as one likes privacy, companionship is

important too. If she wasn't here and wanting to do it, I'd still look

for a roommate. Especially as I become less mobile over time, having

someone else around is attractive. I'm sure sometimes with any roommate

or parents or kids or anyone you'll wish you had your own place and

privacy. But if you had that sometimes you'd wish you had company.

The entire country right now is cooking more at home. As a result the

casual dining restaurants are really suffering. But, people are saving

money. Also, around here all the senior centers serve very low cost

lunches every day. For the people who go, it is a good meal with others

around and insures they get out during the day. Eligibility at most

senior centers here is 50 years old. At others it is 55. Some are so

good that non seniors have tried to get the ages lowered.

One thing that fell out of my entertainment is concerts. At $75-200, I

don't go. I don't go to see the major professional sports teams with

$50-200 seats. However, I may go to see the minor league teams at

$10-15. There is also local entertainment that is free or reasonable.

For me, the best is the zoo.

One reason I elected to live where I do is public transportation too.

When the time comes I can't drive or if I couldn't afford to keep a

vehicle, I've got a bus stop at my door, going east its next destination

is the train station. If that were too difficult for me the local area

has a transportation service for seniors and disabled to take you

anywhere in the area for $2.50. This is door to door pickup and

delivery. The senior center also will pick you up and take you back

home.

Someone mentioned gifts and making their own. You can even make your own

cards online. When I was married we basically told the elderly family

members to give no more gifts except perhaps little trinkets they find.

The cost of gift giving can be very expensive for all around and

celebrations should be about the occasion and time together not spending

money we don't have.

I sure wish I'd budgeted and controlled my spending as well when I made

good money. If I had, then I'd have lots today, but I didn't. Now, on

much less income and much higher medical costs I know what I've got and

control it and manage it and, sadly, I worry far less about money than I

did earlier in life when overextending myself was more the way.

> >

> > Hi everybody,

> >

> > I haven't visited with you all in quite a while. I was officially

> diagnosed in 11/07, went through a work-up for transplant in February

> of " 08, issues found with my heart, remained stable, qualified for

> disability in 4/08, told later that year that I may need a heart as

> well as lung transplant, because the one particular issue with my

> heart puts me at the highest risk for fatality post-transplant, but

> my recent CT scan and PFTs show me stable and on hold indefinitely.

> WOW! Isn't that like being yanked from one end of the universe to the

> other? For any of you who have remained stable, what have your

> physicians told you about the likelihood that because you have

> remained stable, that you might more likely remain stable longer than

> the predicted 5 years? Please share what you have been told with me

> and help me better understand.

> >

> > My income will soon be only my disability, which will allow me to

> pay my mortgage ONLY and nothing else. Does anyone have any

> suggestions for help out there? My faith is strong, for God is

> sufficient in all things. You all have been wonderful with your

> insight in the past, and I would be blessed to hear anything that you

> could offer that might lead me to some good resources. God bless you

> all on our shared journey.

> >

> > Jean, IPF, diag. 11/07

> >

>

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Hi Jean, I have been on permanent medical disability for 5 years now. I live in IL and was able to go to a state office and apply for food stamps, cash assistance (which I did not get), and Medicaid. Lots of hoops to jump through, but worth it in the end. I also had 2 dogs to care for and was still getting monthly marital settlement money. I also applied for housing assistance, or Section 8. That takes longer to get, it's on a needs based point system. Sees to me that more dollars are coming the way of those of us with extensive health care issues, etc. Please try your State Offices and see what they have to offer. Hope that may help you a bit, take care, Suzi

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Aunt Suz...we are in the process of waiting for Section 8. You refer to it as 'needs based point system'...haven't heard that before. Since it's a Fed Program I thought it would be consistent.

Here, it's just when our name comes up... We were 1500 about 2.5 years ago and this year we're up to about 1000. If we ever get it we will move closer to our daughter (35 miles away). Doesn't sound far away but with her busy life/kids/business it would be nice to be close enough so she or the kids could just drop in.

Seems like those of us who need extra help use about the same agencies...it's all in what one qualifies for.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Currently stable but how do you live on disability income.

Hi Jean, I have been on permanent medical disability for 5 years now. I live in IL and was able to go to a state office and apply for food stamps, cash assistance (which I did not get), and Medicaid. Lots of hoops to jump through, but worth it in the end. I also had 2 dogs to care for and was still getting monthly marital settlement money. I also applied for housing assistance, or Section 8. That takes longer to get, it's on a needs based point system. Sees to me that more dollars are coming the way of those of us with extensive health care issues, etc. Please try your State Offices and see what they have to offer. Hope that may help you a bit, take care, Suzi

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Bruce... I remember when we bought season tickets to "cultural events" and attended every one. NO more. Traveled when we wanted....NO more.

Senior Center here has great food for lunch...I think it's about 3 bucks. Many of the local merchants eat there just 'cause it's good food. Seniors of course get the lower price, others pay I think it's a dollar or so more .

We had Meals on Wheels during both of Rich's knee surgeries. Pay what one can pay...food hot when delivered. This can be a good help for those who will apply.

BTW, Senior Centers are a great source of information even if one is not a senior.

We plan on going to the zoo when weather warms again. We will have to rent the little "scooters" but oh well. We just save up for the extra and it's good fun. Boy do we need that too.

Like Peggy said, I remember the time when money was easy.

One time many years ago we paid over $14k to help Lysa gain custody of our Hannah, our granddaughter. We of course knew it was a lot of $$ but we had it is the point. Now medical bills/insurance/etc can be nearly that in one year.

It makes me so irritated that we here on the board all struggle on different levels of "trying to live". Our disease gives us/family/friends enough heartache. Having this disease erode our stability and security is the added pits!

We do ok tho' and have everything we need and most of what we want....

It's a good subject...we are not alone in this shaky boat.

God Bless us all!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Currently stable but how do you live on disability income.

and Sher and Beth and Peggy wrote such excellent answers.Yes, you miss some of the things you can't afford but one can get theessentials with some considerable work at it. Some of the things havetradeoffs and none are perfect but you can be happy and comfortable.Like Beth, I'm not going to be living alone after April, but livingwith my ex-wife. As much as one likes privacy, companionship isimportant too. If she wasn't here and wanting to do it, I'd still lookfor a roommate. Especially as I become less mobile over time, havingsomeone else around is attractive. I'm sure sometimes with any roommateor parents or kids or anyone you'll wish you had your own place andprivacy. But if you had that sometimes you'd wish you had company.The entire country right now is cooking more at home. As a result thecasual dining restaurants are really suffering. But, people are savingmoney. Also, around here all the senior centers serve very low costlunches every day. For the people who go, it is a good meal with othersaround and insures they get out during the day. Eligibility at mostsenior centers here is 50 years old. At others it is 55. Some are sogood that non seniors have tried to get the ages lowered.One thing that fell out of my entertainment is concerts. At $75-200, Idon't go. I don't go to see the major professional sports teams with$50-200 seats. However, I may go to see the minor league teams at$10-15. There is also local entertainment that is free or reasonable.For me, the best is the zoo.One reason I elected to live where I do is public transportation too.When the time comes I can't drive or if I couldn't afford to keep avehicle, I've got a bus stop at my door, going east its next destinationis the train station. If that were too difficult for me the local areahas a transportation service for seniors and disabled to take youanywhere in the area for $2.50. This is door to door pickup anddelivery. The senior center also will pick you up and take you backhome.Someone mentioned gifts and making their own. You can even make your owncards online. When I was married we basically told the elderly familymembers to give no more gifts except perhaps little trinkets they find.The cost of gift giving can be very expensive for all around andcelebrations should be about the occasion and time together not spendingmoney we don't have.I sure wish I'd budgeted and controlled my spending as well when I madegood money. If I had, then I'd have lots today, but I didn't. Now, onmuch less income and much higher medical costs I know what I've got andcontrol it and manage it and, sadly, I worry far less about money than Idid earlier in life when overextending myself was more the way.> >> > Hi everybody,> >> > I haven't visited with you all in quite a while. I was officially> diagnosed in 11/07, went through a work-up for transplant in February> of "08, issues found with my heart, remained stable, qualified for> disability in 4/08, told later that year that I may need a heart as> well as lung transplant, because the one particular issue with my> heart puts me at the highest risk for fatality post-transplant, but> my recent CT scan and PFTs show me stable and on hold indefinitely.> WOW! Isn't that like being yanked from one end of the universe to the> other? For any of you who have remained stable, what have your> physicians told you about the likelihood that because you have> remained stable, that you might more likely remain stable longer than> the predicted 5 years? Please share what you have been told with me> and help me better understand.> >> > My income will soon be only my disability, which will allow me to> pay my mortgage ONLY and nothing else. Does anyone have any> suggestions for help out there? My faith is strong, for God is> sufficient in all things. You all have been wonderful with your> insight in the past, and I would be blessed to hear anything that you> could offer that might lead me to some good resources. God bless you> all on our shared journey.> >> > Jean, IPF, diag. 11/07> >>

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Will you all permit me a little rant. I usually am a very positive person - but I'm finding the need to vent. I just need to blow off some steam, and then I'll be okay again.

I feel so frustrated at as a person who has lived with chronic illness all my life, sometimes working two to three jobs at once to pay for uncovered mets etc. I now find myself having to burn through the little bit of 401K money I managed to save in order to qualify for any help.

I worked hard for my independence. Growing up legally blind my parents used to always wonder how I would live on my own, and I've done it quite well thank you very much. I don't want to give it up.

It just makes me angry (and I know I have to get over it) that somehow if I manage to beat this, if at now 35 I live long enough to ever retire, there won't be a dime left. I will take everything I have just to survive. I know that isn't likely, but someone has to surf the wave of medical science and be the next generation.

My brother also has HPS, but hasn't had many of the chronic symptoms I've had. He lives quite well and is very good at saving his money.

My parents act like my financial situation is some sort of act of irresponsibility. It makes me so mad! Neither one of them lives within a thousand miles or has ever bothered to learn anything about my illness, but they're experts on everything.

What did I do that was so wrong? I don't own anything - I still have my milk carton crate furniture from college. I feel like everyone acts like this is all my fault. I know it isn't, but I'm tired of the little comments etc.

There are some days I'm hopping along okay, and others where I'm just down right pissed off.

Okay, I'm done - thanks!

Getting out the cheese to go with the whine....

Hermansky-Pudlak Syndrome albinism 02 / PF 06

> > >> > > Hi everybody,> > >> > > I haven't visited with you all in quite a while. I was officially> > diagnosed in 11/07, went through a work-up for transplant in February> > of "08, issues found with my heart, remained stable, qualified for> > disability in 4/08, told later that year that I may need a heart as> > well as lung transplant, because the one particular issue with my> > heart puts me at the highest risk for fatality post-transplant, but> > my recent CT scan and PFTs show me stable and on hold indefinitely.> > WOW! Isn't that like being yanked from one end of the universe to the> > other? For any of you who have remained stable, what have your> > physicians told you about the likelihood that because you have> > remained stable, that you might more likely remain stable longer than> > the predicted 5 years? Please share what you have been told with me> > and help me better understand.> > >> > > My income will soon be only my disability, which will allow me to> > pay my mortgage ONLY and nothing else. Does anyone have any> > suggestions for help out there? My faith is strong, for God is> > sufficient in all things. You all have been wonderful with your> > insight in the past, and I would be blessed to hear anything that you> > could offer that might lead me to some good resources. God bless you> > all on our shared journey.> > >> > > Jean, IPF, diag. 11/07> > >> >>

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, I am so amazed and proud of you. I watched you on you tube and all I could think was God help this sweet precious girl with the load she is carrying. Now to hear this.. RANT Honey RANT.. Some people just shouldn't be given air to breathe.. Ya know !!!!!! Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Will you all permit me a little rant. I usually am a very positive person - but I'm finding the need to vent. I just need to blow off some steam, and then I'll be okay again.I feel so frustrated at as a person who has lived with chronic illness all my life, sometimes working two to three jobs at once to pay for uncovered mets etc. I now find myself having to burn through the little bit of 401K money I managed to save in order to qualify for any help.I worked hard for my independence. Growing up legally blind my parents used to always wonder how I would live on my own, and I've done it quite well thank you very much. I don't want to give it up. It just makes me angry (and I know I have to get over it) that somehow if I manage to beat this, if at now 35 I live long enough to ever retire, there won't be a dime left. I will take everything I have just to survive. I know that isn't likely, but someone has to surf the wave of medical science and be the next generation. My brother also has HPS, but hasn't had many of the chronic symptoms I've had. He lives quite well and is very good at saving his money. My parents act like my financial situation is some sort of act of irresponsibility. It makes me so mad! Neither one of them lives within a thousand miles or has ever bothered to learn anything about my illness, but they're experts on everything.What did I do that was so wrong? I don't own anything - I still have my milk carton crate furniture from college. I feel like everyone acts like this is all my fault. I know it isn't, but I'm tired of the little comments  etc.There are some days I'm hopping along okay, and others where I'm just down right pissed off. Okay, I'm done - thanks!Getting out the cheese to go with the whine.... Hermansky-Pudlak Syndrome albinism 02 / PF 06  > > >> > > Hi everybody,> > >> > > I haven't visited with you all in quite a while. I was officially> > diagnosed in 11/07, went through a work-up for transplant in February> > of "08, issues found with my heart, remained stable, qualified for> > disability in 4/08, told later that year that I may need a heart as> > well as lung transplant, because the one particular issue with my> > heart puts me at the highest risk for fatality post-transplant, but> > my recent CT scan and PFTs show me stable and on hold indefinitely.> > WOW! Isn't that like being yanked from one end of the universe to the> > other? For any of you who have remained stable, what have your> > physicians told you about the likelihood that because you have> > remained stable, that you might more likely remain stable longer than> > the predicted 5 years? Please share what you have been told with me> > and help me better understand.> > >> > > My income will soon be only my disability, which will allow me to> > pay my mortgage ONLY and nothing else. Does anyone have any> > suggestions for help out there? My faith is strong, for God is> > sufficient in all things. You all have been wonderful with your> > insight in the past, and I would be blessed to hear anything that you> > could offer that might lead me to some good resources. God bless you> > all on our shared journey.> > >> > > Jean, IPF, diag. 11/07> > >> >>

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Peggy, are you the one who wrote about being invaded by the lady bugs the other day? I had to laugh!!! I try to keep my food garden in the back yard organic. I BUY lady bugs by the sack full of 100 to eat the aphids off my apple trees and veggies... Too bad yours don't come up here on their own!

To: Breathe-Support Sent: Tuesday, February 10, 2009 1:56:13 PMSubject: Re: Re: Currently stable but how do you live on disability income., I am so amazed and proud of you. I watched you on you tube and all I could think was God help this sweet precious girl with the load she is carrying. Now to hear this.. RANT Honey RANT.. Some people just shouldn't be given air to breathe.. Ya know !!!!!!

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Will you all permit me a little rant. I usually am a very positive person - but I'm finding the need to vent. I just need to blow off some steam, and then I'll be okay again.

I feel so frustrated at as a person who has lived with chronic illness all my life, sometimes working two to three jobs at once to pay for uncovered mets etc. I now find myself having to burn through the little bit of 401K money I managed to save in order to qualify for any help.

I worked hard for my independence. Growing up legally blind my parents used to always wonder how I would live on my own, and I've done it quite well thank you very much. I don't want to give it up.

It just makes me angry (and I know I have to get over it) that somehow if I manage to beat this, if at now 35 I live long enough to ever retire, there won't be a dime left. I will take everything I have just to survive. I know that isn't likely, but someone has to surf the wave of medical science and be the next generation.

My brother also has HPS, but hasn't had many of the chronic symptoms I've had. He lives quite well and is very good at saving his money.

My parents act like my financial situation is some sort of act of irresponsibility. It makes me so mad! Neither one of them lives within a thousand miles or has ever bothered to learn anything about my illness, but they're experts on everything.

What did I do that was so wrong? I don't own anything - I still have my milk carton crate furniture from college. I feel like everyone acts like this is all my fault. I know it isn't, but I'm tired of the little comments etc.

There are some days I'm hopping along okay, and others where I'm just down right pissed off.

Okay, I'm done - thanks!

Getting out the cheese to go with the whine....

Hermansky-Pudlak Syndrome albinism 02 / PF 06

> > >> > > Hi everybody,> > >> > > I haven't visited with you all in quite a while. I was officially> > diagnosed in 11/07, went through a work-up for transplant in February> > of "08, issues found with my heart, remained stable, qualified for> > disability in 4/08, told later that year that I may need a heart as> > well as lung transplant, because the one particular issue with my> > heart puts me at the highest risk for fatality post-transplant, but> > my recent CT scan and PFTs show me stable and on hold indefinitely.> > WOW! Isn't that like being yanked from one end of the universe to the> > other? For any of you who have remained stable, what have your> > physicians told you about the likelihood that because you have> > remained stable, that you might more likely remain stable longer than> > the predicted 5 years? Please share what you have been told with me> > and help me better understand.> > >> > > My income will soon be only my disability, which will allow me to> > pay my mortgage ONLY and nothing else. Does anyone

have any> > suggestions for help out there? My faith is strong, for God is> > sufficient in all things. You all have been wonderful with your> > insight in the past, and I would be blessed to hear anything that you> > could offer that might lead me to some good resources. God bless you> > all on our shared journey.> > >> > > Jean, IPF, diag. 11/07> > >> >>

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One time we went to my sisters house in Tn. And have NEVER seen so many. The window seals were FULL.They were almost like a plague.   Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Peggy, are you the one who wrote about being invaded by the lady bugs the other day? I had to laugh!!! I try to keep my food garden in the back yard organic. I BUYlady bugs by the sack full of 100 to eat the aphids off my apple trees and veggies... Too bad yours don't come up here on their own!From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support Sent: Tuesday, February 10, 2009 1:56:13 PMSubject: Re: Re: Currently stable but how do you live on disability income., I am so amazed and proud of you. I watched you on you tube and all I could think was God help this sweet precious girl with the load she is carrying. Now to hear this.. RANT Honey RANT.. Some people just shouldn't be given air to breathe.. Ya know !!!!!!Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Will you all permit me a little rant. I usually am a very positive person - but I'm finding the need to vent. I just need to blow off some steam, and then I'll be okay again.I feel so frustrated at as a person who has lived with chronic illness all my life, sometimes working two to three jobs at once to pay for uncovered mets etc. I now find myself having to burn through the little bit of 401K money I managed to save in order to qualify for any help.I worked hard for my independence. Growing up legally blind my parents used to always wonder how I would live on my own, and I've done it quite well thank you very much. I don't want to give it up. It just makes me angry (and I know I have to get over it) that somehow if I manage to beat this, if at now 35 I live long enough to ever retire, there won't be a dime left. I will take everything I have just to survive. I know that isn't likely, but someone has to surf the wave of medical science and be the next generation. My brother also has HPS, but hasn't had many of the chronic symptoms I've had. He lives quite well and is very good at saving his money. My parents act like my financial situation is some sort of act of irresponsibility. It makes me so mad! Neither one of them lives within a thousand miles or has ever bothered to learn anything about my illness, but they're experts on everything.What did I do that was so wrong? I don't own anything - I still have my milk carton crate furniture from college. I feel like everyone acts like this is all my fault. I know it isn't, but I'm tired of the little comments  etc.There are some days I'm hopping along okay, and others where I'm just down right pissed off. Okay, I'm done - thanks!Getting out the cheese to go with the whine.... Hermansky-Pudlak Syndrome albinism 02 / PF 06  > > >> > > Hi everybody,> > >> > > I haven't visited with you all in quite a while. I was officially> > diagnosed in 11/07, went through a work-up for transplant in February> > of "08, issues found with my heart, remained stable, qualified for> > disability in 4/08, told later that year that I may need a heart as> > well as lung transplant, because the one particular issue with my> > heart puts me at the highest risk for fatality post-transplant, but> > my recent CT scan and PFTs show me stable and on hold indefinitely.> > WOW! Isn't that like being yanked from one end of the universe to the> > other? For any of you who have remained stable, what have your> > physicians told you about the likelihood that because you have> > remained stable, that you might more likely remain stable longer than> > the predicted 5 years? Please share what you have been told with me> > and help me better understand.> > >> > > My income will soon be only my disability, which will allow me to> > pay my mortgage ONLY and nothing else. Does anyone have any> > suggestions for help out there? My faith is strong, for God is> > sufficient in all things. You all have been wonderful with your> > insight in the past, and I would be blessed to hear anything that you> > could offer that might lead me to some good resources. God bless you> > all on our shared journey.> > >> > > Jean, IPF, diag. 11/07> > >> >>

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> Aunt Suz...we are in the process of waiting for Section 8. You refer

to it as 'needs based point system'...haven't heard that before. Since

it's a Fed Program I thought it would be consistent.

> Here, it's just when our name comes up... We were 1500 about 2.5

years ago and this year we're up to about 1000. If we ever get it we

will move closer to our daughter (35 miles away). Doesn't sound far

away but with her busy life/kids/business it would be nice to be close

enough so she or the kids could just drop in.

> Seems like those of us who need extra help use about the same

agencies...it's all in what one qualifies for.

>

>

> MamaSher, age 70. IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

Hey Mama Sher,

In IL, you apply, and wait..and wait..and wait. They call it " polling

the numbers " here. You get 10 points if you're on permanent medical

disability, 15 points if you're a resident of Lake County (where I

applied and live), and THEN I had to move, due to my landlady needed

my living area for her son & his girlfriend..what they call

" involuntary displacement. " So 15 more points for Aunt Suz..and then

they " polled the numbers " and Voila I finally became eligible. Other

point makers are being an abused person, etc lovely things like that.

Good thing I applied several years ago...I felt like I got a noodge

from Up There when I did apply. Suzi

p.s. love your " don't fret " tag line!

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, I am very happy to hear your rant! Life isn't fair and being pissed off at ignorance is a good thing.

I was born weighing 3lb 11oz back in the dark ages when they didn't have all of the technology and preventative medicines we now have.

I had brain damage, a 50% hearing loss and was legally blind. I worked my ass off just to do the same things others did so easily.

I was alone and seething about how I was treated as a student.

I swore that I would do all that I could to make life better for those in difficult situations such as mine. None of us sat down and consciously decided to have our disabilities and that having them would improve our quality of life.

I found compassionate people and modeled myself after them and became a teacher...that was a shock to a lot of people who wouldn't see my disabilities and thought that I was stupid and lazy..

I taught my students as individual human beings. MY goal for them was that they learned what they needed to know to get through their days with some quality of life worth living and for them to go beyond that to find happiness, success and fulfill their dreams within their realistic personal limits.

I found that too difficult to do while seeing over a hundred students a day.

I went back to school to become a clinician in order to work one on one and with smaller groups.

Oh, wait, I was supposed to be stupid and was made fun of. How did the people who thought that of me explain my successes?

My parents always criticized me for living above my means and wasting my money on more education. They never once traveled to see where I lived, taught or worked. They seemed to enjoy the nice things I acquired because I spent my money wisely where as my father was always the big spender pouring money down the toilet. He projected his wasteful ways on me.

When I had an accident, it had to have been my fault to them, even though the other driver hit me. Everything was all my fault to too many people. I had an aunt that rubbed in that I couldn't even spell, it hit my core of insecurity even though I knew that I spelled Alyeska, the ski resort, correctly and mentioned halibut steaks which she insisted she had never heard of...all her ignorance yet hard for me to be objective about...hurt that I was not taken as being credible there by being disrespected.

I married, a doctor yet, had a beautiful daughter and fulfilled my dreams of becoming a mom and home maker, grammie goose to my grand children and along the way my doctor died of heart failure, my daughter didn't like it when I remarried and after a lifetime of trying to right the wrongs of the world ( our university yearbook theme the year I graduated was the Impossible Dream from the Man of La Mancha) and living a healthy life, I got lung disease.

Guess where my money went...my meds alone are over $70,000 a year. Everything is gone except my home and Volvo. I have all of the things that I need and have kept most of the things I want.

I had Lazar surgery on my eyes but the admiral botched it, had my teeth fixed but can't pay for their upkeep...it was worse having to have a tooth pulled and not being able to afford an implant than getting my diagnoses I think.

What a rant of my own...You are not alone! You did not deserve your disabilities, you deserve all of the good things you can grab and hang on to.

My 2 cents worth of advice is be damned with what anyone else thinks, take care of what you need to make yourself comfortable and able to have as much happiness and pleasure as you can grab! Spend that 401K on things to get rid of it, a good bed, get a good TV, music system and computer. Get a comfortable chair and a table to sit and eat at. The rest can come from thrift stores; it can be fun and recreational looking for just what you need and finding your treasure. Make a treasure hunt outing with a friend if you want and have a cheap thrills lunch out with a two for one coupon. One of my current quests is to find a beautiful bud vase to replace the one I treasured and broke...it came from a yard sale for $1. It was an expensive beautiful thing that apparently was no longer appreciated and wanted by the sellers...I'll know it's replacement when I see it. The good thing

is that poverty of the material brings richness of spirit. If you don't take care of yourself, you will have little reserve to be concerned about and love others that in turn give back to you.

Here I am over forty years later where everyone thought I would spend my whole life; on disability but oh I bought my ticket and had quite a ride. I have not had good experiences with voc rehab but some do. You are young. Here I am fat after years of the battle of the bulge and back to being too loopy to make sense from lack of oxygen... and I don't worry about it very much at all, what's a little aphasia and a little more brain damage... I figured out what was really important a very long time ago.

Ramble and rant, some one mentioned enjoying going to the zoo. Here they have a free family day once a year and they also have a couple of days where those who can't walk are given tours on golf carts or small multi seated vehicles with their own tour guide giving a narrative. One nature center has free craft classes where you only pay $5 to park and it is a spectacular drive to get there. Get a car load together, split the gas and parking, pack a pot luck picnic and head off for a fun day of cheap thrills. I used to do this with an 18 person van full of folks from where I worked...I got to enjoy the trip right along with them, watch them having fun and I got paid for it too. There are ways to do it. I took a distance delivery class from Trinity College of Vermont and the people who came up here for our classes once a month had a client on disability who dreamed of flying and

traveling...they heard her wish and flew her up to speak to our class...she got a free expense paid trip to Alaska to teach us about her disability and her feelings. She was validated as a valuable human being and fulfilled her desire to travel that she could otherwise not afford.

I could ramble on and on. YOU WILL BE OK! I am sure there are people on this board and elsewhere to guide you along your way. Being afraid of the unknown and angry that things can't be the way you hoped are all normal. Best wishes on your journey; you know you have rights to accommodations of all of your disabilities in the work place, even if it requires a one on one attendant that you hire as your employee 24/7, if you want to work and can do your work according to the job description given to all in the same position. And always remember you are valuable and loved even if you never work another day in your life.

To: Breathe-Support Sent: Tuesday, February 10, 2009 12:17:07 PMSubject: Re: Currently stable but how do you live on disability income.

Will you all permit me a little rant. I usually am a very positive person - but I'm finding the need to vent. I just need to blow off some steam, and then I'll be okay again.

I feel so frustrated at as a person who has lived with chronic illness all my life, sometimes working two to three jobs at once to pay for uncovered mets etc. I now find myself having to burn through the little bit of 401K money I managed to save in order to qualify for any help.

I worked hard for my independence. Growing up legally blind my parents used to always wonder how I would live on my own, and I've done it quite well thank you very much. I don't want to give it up.

It just makes me angry (and I know I have to get over it) that somehow if I manage to beat this, if at now 35 I live long enough to ever retire, there won't be a dime left. I will take everything I have just to survive. I know that isn't likely, but someone has to surf the wave of medical science and be the next generation.

My brother also has HPS, but hasn't had many of the chronic symptoms I've had. He lives quite well and is very good at saving his money.

My parents act like my financial situation is some sort of act of irresponsibility. It makes me so mad! Neither one of them lives within a thousand miles or has ever bothered to learn anything about my illness, but they're experts on everything.

What did I do that was so wrong? I don't own anything - I still have my milk carton crate furniture from college. I feel like everyone acts like this is all my fault. I know it isn't, but I'm tired of the little comments etc.

There are some days I'm hopping along okay, and others where I'm just down right pissed off.

Okay, I'm done - thanks!

Getting out the cheese to go with the whine....

Hermansky-Pudlak Syndrome albinism 02 / PF 06

> > >> > > Hi everybody,> > >> > > I haven't visited with you all in quite a while. I was officially> > diagnosed in 11/07, went through a work-up for transplant in February> > of "08, issues found with my heart, remained stable, qualified for> > disability in 4/08, told later that year that I may need a heart as> > well as lung transplant, because the one particular issue with my> > heart puts me at the highest risk for fatality post-transplant, but> > my recent CT scan and PFTs show me stable and on hold indefinitely.> > WOW! Isn't that like being yanked from one end of the universe to the> > other? For any of you who have remained stable, what have your> > physicians told you about the likelihood that because you have> >

remained stable, that you might more likely remain stable longer than> > the predicted 5 years? Please share what you have been told with me> > and help me better understand.> > >> > > My income will soon be only my disability, which will allow me to> > pay my mortgage ONLY and nothing else. Does anyone have any> > suggestions for help out there? My faith is strong, for God is> > sufficient in all things. You all have been wonderful with your> > insight in the past, and I would be blessed to hear anything that you> > could offer that might lead me to some good resources. God bless you> > all on our shared journey.> > >> > > Jean, IPF, diag. 11/07> > >> >>

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Yes--I remember those days--not so long ago.

I used to work in a Senior Center. Never thought I would need its services. The best meals were on Tuesday, Thursday and Friday--they were the most crowded days. Staff got to eat the leftovers for the day.

In the 1980's they asked for a $0.50 donation per meal.

We had frozen meals that we would deliver to the homebound elderly. I think it was a one week supply. There are other agencies that deliver hot meals on wheels, but I never worked

for those agencies.

It was part of the State Area on Aging system.

We also had social, cultural and educational activities. That was my job - to plan the activities before and after lunch -- and the summer day trips.

Pink Joyce IPF 3/06 Pennsylvania

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Subject: Re: Re: Currently stable but how do you live on disability income.To: Breathe-Support Date: Tuesday, February 10, 2009, 3:57 PM

Bruce... I remember when we bought season tickets to "cultural events" and attended every one. NO more. Traveled when we wanted....NO more.

Senior Center here has great food for lunch...I think it's about 3 bucks. Many of the local merchants eat there just 'cause it's good food. Seniors of course get the lower price, others pay I think it's a dollar or so more .

We had Meals on Wheels during both of Rich's knee surgeries. Pay what one can pay...food hot when delivered. This can be a good help for those who will apply.

BTW, Senior Centers are a great source of information even if one is not a senior.

We plan on going to the zoo when weather warms again. We will have to rent the little "scooters" but oh well. We just save up for the extra and it's good fun. Boy do we need that too.

Like Peggy said, I remember the time when money was easy.

One time many years ago we paid over $14k to help Lysa gain custody of our Hannah, our granddaughter. We of course knew it was a lot of $$ but we had it is the point. Now medical bills/insurance/ etc can be nearly that in one year.

It makes me so irritated that we here on the board all struggle on different levels of "trying to live". Our disease gives us/family/friends enough heartache. Having this disease erode our stability and security is the added pits!

We do ok tho' and have everything we need and most of what we want....

It's a good subject...we are not alone in this shaky boat.

God Bless us all!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Currently stable but how do you live on disability income.

and Sher and Beth and Peggy wrote such excellent answers.Yes, you miss some of the things you can't afford but one can get theessentials with some considerable work at it. Some of the things havetradeoffs and none are perfect but you can be happy and comfortable.Like Beth, I'm not going to be living alone after April, but livingwith my ex-wife. As much as one likes privacy, companionship isimportant too. If she wasn't here and wanting to do it, I'd still lookfor a roommate. Especially as I become less mobile over time, havingsomeone else around is attractive. I'm sure sometimes with any roommateor parents or kids or anyone you'll wish you had your own place andprivacy. But if you had that sometimes you'd wish you had company.The entire country right now is cooking more at home. As a result thecasual dining restaurants are really suffering. But, people are savingmoney. Also,

around here all the senior centers serve very low costlunches every day. For the people who go, it is a good meal with othersaround and insures they get out during the day. Eligibility at mostsenior centers here is 50 years old. At others it is 55. Some are sogood that non seniors have tried to get the ages lowered.One thing that fell out of my entertainment is concerts. At $75-200, Idon't go. I don't go to see the major professional sports teams with$50-200 seats. However, I may go to see the minor league teams at$10-15. There is also local entertainment that is free or reasonable.For me, the best is the zoo.One reason I elected to live where I do is public transportation too.When the time comes I can't drive or if I couldn't afford to keep avehicle, I've got a bus stop at my door, going east its next destinationis the train station. If that were too difficult for me the local areahas a

transportation service for seniors and disabled to take youanywhere in the area for $2.50. This is door to door pickup anddelivery. The senior center also will pick you up and take you backhome.Someone mentioned gifts and making their own. You can even make your owncards online. When I was married we basically told the elderly familymembers to give no more gifts except perhaps little trinkets they find.The cost of gift giving can be very expensive for all around andcelebrations should be about the occasion and time together not spendingmoney we don't have.I sure wish I'd budgeted and controlled my spending as well when I madegood money. If I had, then I'd have lots today, but I didn't. Now, onmuch less income and much higher medical costs I know what I've got andcontrol it and manage it and, sadly, I worry far less about money than Idid earlier in life when overextending myself was more the

way.> >> > Hi everybody,> >> > I haven't visited with you all in quite a while. I was officially> diagnosed in 11/07, went through a work-up for transplant in February> of "08, issues found with my heart, remained stable, qualified for> disability in 4/08, told later that year that I may need a heart as> well as lung transplant, because the one particular issue with my> heart puts me at the highest risk for

fatality post-transplant, but> my recent CT scan and PFTs show me stable and on hold indefinitely.> WOW! Isn't that like being yanked from one end of the universe to the> other? For any of you who have remained stable, what have your> physicians told you about the likelihood that because you have> remained stable, that you might more likely remain stable longer than> the predicted 5 years? Please share what you have been told with me> and help me better understand.> >> > My income will soon be only my disability, which will allow me to> pay my mortgage ONLY and nothing else. Does anyone have any> suggestions for help out there? My faith is strong, for God is> sufficient in all things. You all have been wonderful with your> insight in the past, and I would be blessed to hear anything that you> could offer that might lead me to some good resources. God

bless you> all on our shared journey.> >> > Jean, IPF, diag. 11/07> >>

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I forgot about the waiting list for section 8 housing.

My aunt was on it for several years before she got in. She was so relieved when she did move -- financially. Plus it was much smaller than her apartment so there was less to take care of.

Pink Joyce IPF 3/06 Pennsylvania

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Subject: Re: Currently stable but how do you live on disability income.To: Breathe-Support Date: Tuesday, February 10, 2009, 10:34 PM

> Aunt Suz...we are in the process of waiting for Section 8. You referto it as 'needs based point system'...haven' t heard that before. Sinceit's a Fed Program I thought it would be consistent.> Here, it's just when our name comes up... We were 1500 about 2.5years ago and this year we're up to about 1000. If we ever get it wewill move closer to our daughter (35 miles away). Doesn't sound faraway but with her busy life/kids/business it would be nice to be closeenough so she or the kids could just drop in.> Seems like those of us who need extra help use about the sameagencies...it' s all in what one qualifies for.> > > MamaSher, age 70. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!Hey Mama Sher,In IL, you apply, and wait..and wait..and wait. They call it "pollingthe numbers" here. You get 10 points if you're on permanent

medicaldisability, 15 points if you're a resident of Lake County (where Iapplied and live), and THEN I had to move, due to my landlady neededmy living area for her son & his girlfriend.. what they call"involuntary displacement. " So 15 more points for Aunt Suz..and thenthey "polled the numbers" and Voila I finally became eligible. Otherpoint makers are being an abused person, etc lovely things like that.Good thing I applied several years ago...I felt like I got a noodgefrom Up There when I did apply. Suzi p.s. love your "don't fret" tag line!

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This is the place to rant -- it's ok to see RED.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: Currently stable but how do you live on disability income.To: Breathe-Support Date: Tuesday, February 10, 2009, 4:17 PM

Will you all permit me a little rant. I usually am a very positive person - but I'm finding the need to vent. I just need to blow off some steam, and then I'll be okay again.

I feel so frustrated at as a person who has lived with chronic illness all my life, sometimes working two to three jobs at once to pay for uncovered mets etc. I now find myself having to burn through the little bit of 401K money I managed to save in order to qualify for any help.

I worked hard for my independence. Growing up legally blind my parents used to always wonder how I would live on my own, and I've done it quite well thank you very much. I don't want to give it up.

It just makes me angry (and I know I have to get over it) that somehow if I manage to beat this, if at now 35 I live long enough to ever retire, there won't be a dime left. I will take everything I have just to survive. I know that isn't likely, but someone has to surf the wave of medical science and be the next generation.

My brother also has HPS, but hasn't had many of the chronic symptoms I've had. He lives quite well and is very good at saving his money.

My parents act like my financial situation is some sort of act of irresponsibility. It makes me so mad! Neither one of them lives within a thousand miles or has ever bothered to learn anything about my illness, but they're experts on everything.

What did I do that was so wrong? I don't own anything - I still have my milk carton crate furniture from college. I feel like everyone acts like this is all my fault. I know it isn't, but I'm tired of the little comments etc.

There are some days I'm hopping along okay, and others where I'm just down right pissed off.

Okay, I'm done - thanks!

Getting out the cheese to go with the whine....

Hermansky-Pudlak Syndrome albinism 02 / PF 06

> > >> > > Hi everybody,> > >> > > I haven't visited with you all in quite a while. I was officially> > diagnosed in 11/07, went through a work-up for transplant in February> > of "08, issues found with my heart, remained stable, qualified for> > disability in 4/08, told later that year that I may need a heart as> > well as lung transplant, because the one particular issue with my> > heart puts me at the highest risk for fatality post-transplant, but> > my recent CT scan and PFTs show me stable and on hold indefinitely.> > WOW! Isn't that like being yanked from one end of the universe to the> > other? For any of you who have remained stable, what have your> > physicians told you about the likelihood that because you have> >

remained stable, that you might more likely remain stable longer than> > the predicted 5 years? Please share what you have been told with me> > and help me better understand.> > >> > > My income will soon be only my disability, which will allow me to> > pay my mortgage ONLY and nothing else. Does anyone have any> > suggestions for help out there? My faith is strong, for God is> > sufficient in all things. You all have been wonderful with your> > insight in the past, and I would be blessed to hear anything that you> > could offer that might lead me to some good resources. God bless you> > all on our shared journey.> > >> > > Jean, IPF, diag. 11/07> > >> >>

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