Question about Disability

October 2, 2009

My name is ,after feeling steadily weaker over the last year, I went to the

doctor on Aug. 25th, the next day I was told that i had luekemia and that I had

to get to the hospital. Being without insurance I made the one and a half hour

drive to Corvallis, Oregon, I live in a small town on the coast. The oncologist

told me I had CML. I was put on hydroxuria and given three pints of blood to

bring me back up to 9.0 in hemo. and since have had to go in for 2 units about

every 12 days. Thru the program at Novartis, I received a 30 day supply of

gleevec, to day is my 2nd day on it, currently no ill effects. I have filed for

and just received medical support and food stamps from Oregon. I have also

applied for SS/DI, as I can't imagine being able to go back to work in the next

year, I am 51 and always in pretty good health and shape, but this has weakened

me to the point I have to nap and I wear out trying to do everyday chores, My

question is, is

anyone considered disabled with CML, my Oncologist originally told me, when I

mentioned to him that I had was going to file SS/DI, that he may be able to get

me back to work in a couple of months, I worked construction, and currently

cant.t see it any time soon, altho I pumped gas the last couple of months prior

to being diagnosed, untill I couldn't do that either because of lack of

strength, I had to try to make some kind of money, there is no cash assistance

and Iam just wondering if others have experianced this type of sittuation,

thankyou,

October 2, 2009

Hi ,

I'll let others chime in on the disability aspect as I know there are some who

have gone on it but I did want to say that if you can get your Hgb up to normal

levels, I don't doubt that you'll feel a whole lot better and with tons more

energy.

I think most of the people with CML live fairly " normal " lives which is to say

they continue to work and live as they did before they got CML but there are

some who have difficulty with side effects and are not able to. Only time will

tell which category you'll fit into but please give yourself some time to adjust

to the diagnosis and treatment. I think you'll be pleasantly surprised to see

how much better things can get.

Tracey

dx Jan 2002

>

> My name is ,after feeling steadily weaker over the last year, I went to

the doctor on Aug. 25th, the next day I was told that i had luekemia and that I

had to get to the hospital. Being without insurance I made the one and a half

hour drive to Corvallis, Oregon, I live in a small town on the coast. The

oncologist told me I had CML. I was put on hydroxuria and given three pints of

blood to bring me back up to 9.0 in hemo. and since have had to go in for 2

units about every 12 days. Thru the program at Novartis, I received a 30 day

supply of gleevec, to day is my 2nd day on it, currently no ill effects. I have

filed for and just received medical support and food stamps from Oregon. I have

also applied for SS/DI, as I can't imagine being able to go back to work in the

next year, I am 51 and always in pretty good health and shape, but this

has weakened me to the point I have to nap and I wear out trying to do everyday

chores, My question is, is

> anyone considered disabled with CML, my Oncologist originally told me, when I

mentioned to him that I had was going to file SS/DI, that he may be able to get

me back to work in a couple of months, I worked construction, and currently

cant.t see it any time soon, altho I pumped gas the last couple of months prior

to being diagnosed, untill I couldn't do that either because of lack of

strength, I had to try to make some kind of money, there is no cash assistance

and Iam just wondering if others have experianced this type of sittuation,

thankyou,

>

October 3, 2009

, Once the Gleevec starts to really take hold, you may find that

you do have most if not all your strength back. i was on SSI for the

first two years back in 2000, but that was in the days of Interferon

and Ara-C, when all I did was feel like I had the flu and slept almost

18 hours a day. I am now back to work, not full time because I have

not been able to find what i want as a full time position since the

recession, but am still looking. good luck to you and let us know of

our progress. there is plenty of information for the newly diagnosed

inour file section. Take a look. Any questions, feel free to ask,

someone will have the answer.

On Oct 2, 2009, at 2:43 PM, john laghlin wrote:

> My name is ,after feeling steadily weaker over the last year, I

> went to the doctor on Aug. 25th, the next day I was told that i had

> luekemia and that I had to get to the hospital. Being without

> insurance I made the one and a half hour drive to Corvallis, Oregon,

> I live in a small town on the coast. The oncologist told me I had

> CML. I was put on hydroxuria and given three pints of blood to bring

> me back up to 9.0 in hemo. and since have had to go in for 2 units

> about every 12 days. Thru the program at Novartis, I received a 30

> day supply of gleevec, to day is my 2nd day on it, currently no ill

> effects. I have filed for and just received medical support and food

> stamps from Oregon. I have also applied for SS/DI, as I can't

> imagine being able to go back to work in the next year, I am 51 and

> always in pretty good health and shape, but this has weakened me to

> the point I have to nap and I wear out trying to do everyday chores,

> My question is, is

> anyone considered disabled with CML, my Oncologist originally told

> me, when I mentioned to him that I had was going to file SS/DI, that

> he may be able to get me back to work in a couple of months, I

> worked construction, and currently cant.t see it any time soon,

> altho I pumped gas the last couple of months prior to being

> diagnosed, untill I couldn't do that either because of lack of

> strength, I had to try to make some kind of money, there is no cash

> assistance and Iam just wondering if others have experianced this

> type of sittuation, thankyou,

>

October 3, 2009

Yes , I think it is good for to hope for the bright side.

However, those who think it always works out that way, especially those who

hold the power to grant disability, can sometimes make it hard the truly

deserving to receive the benefit to which they are entitled. I have been on

Gleevec for over six years now, I have struggled with anemia, iron

deficiency anemia and now pernicious (vitamin B-12) anemia. I am a CPA, but

working in that profession calls for a very high energy level all the

time... it is just not there any more! I am better since I began the B-12

injections but I am a long way from putting the green eye-shades on again. I

don't know, maybe being 65 now has something to do with it?

deserves a chance to devote all of his energy to fighting CML. If he

recovers to the point he can resume work, he will be the first to know it. I

hope the bureaucrats out there can figure out that we are all different.

Troxel

On Fri, Oct 2, 2009 at 4:45 PM, Orenstein

<scrappygirl123@...>wrote:

>

> , Once the Gleevec starts to really take hold, you may find that

> you do have most if not all your strength back. i was on SSI for the

> first two years back in 2000, but that was in the days of Interferon

> and Ara-C, when all I did was feel like I had the flu and slept almost

> 18 hours a day. I am now back to work, not full time because I have

> not been able to find what i want as a full time position since the

> recession, but am still looking. good luck to you and let us know of

> our progress. there is plenty of information for the newly diagnosed

> inour file section. Take a look. Any questions, feel free to ask,

> someone will have the answer.

>

> On Oct 2, 2009, at 2:43 PM, john laghlin wrote:

>

> > My name is ,after feeling steadily weaker over the last year, I

> > went to the doctor on Aug. 25th, the next day I was told that i had

> > luekemia and that I had to get to the hospital. Being without

> > insurance I made the one and a half hour drive to Corvallis, Oregon,

> > I live in a small town on the coast. The oncologist told me I had

> > CML. I was put on hydroxuria and given three pints of blood to bring

> > me back up to 9.0 in hemo. and since have had to go in for 2 units

> > about every 12 days. Thru the program at Novartis, I received a 30

> > day supply of gleevec, to day is my 2nd day on it, currently no ill

> > effects. I have filed for and just received medical support and food

> > stamps from Oregon. I have also applied for SS/DI, as I can't

> > imagine being able to go back to work in the next year, I am 51 and

> > always in pretty good health and shape, but this has weakened me to

> > the point I have to nap and I wear out trying to do everyday chores,

> > My question is, is

> > anyone considered disabled with CML, my Oncologist originally told

> > me, when I mentioned to him that I had was going to file SS/DI, that

> > he may be able to get me back to work in a couple of months, I

> > worked construction, and currently cant.t see it any time soon,

> > altho I pumped gas the last couple of months prior to being

> > diagnosed, untill I couldn't do that either because of lack of

> > strength, I had to try to make some kind of money, there is no cash

> > assistance and Iam just wondering if others have experianced this

> > type of sittuation, thankyou,

> >

October 3, 2009

I am 51 and always in pretty good health and shape, but this has weakened me to

the point I have to nap and I wear out trying to do everyday chores, My

question is, is

> anyone considered disabled with CML, my Oncologist originally told me, when I

mentioned to him that I had was going to file SS/DI, that he may be able to get

me back to work in a couple of months, I worked construction, and currently

cant.t see it any time soon,

_______________________

Hi ,

I am a neighbor of yours.....I live in Eugene, OR and was diagnosed with CML 11

years ago. My primary oncologist is in Portland at OHSU, but I also have a local

oncolgist in Eugene.

I would file right away for SS/DI because as others have said you do not know

how you will do with the drugs, etc. I am on Disability. Here is my history. I

previously worked as a physical therapist at the Uni of Oregon (go Ducks,

right?) When I was first diagnosed, I worked for a period of time, but I was

really fatigued.....the drugs are different and better now. Then I was off work

doing an experimental treatment, for a total of 14 months (I think you get SS

Dis. after being off work for 6 months)......when Gleevec became available in a

trial, I went back to work after being on Gleevec for 6 weeks, but I only worked

1/2 time, again because of fatigue and anemia (the low red count). I worked 1/2

time for 4 years.......the retired early because I needed a new drug and they

re-instituted my SS Disability, which I continue on.

I think in Oregon it seems a bit easier to get qualified for SS Disability than

in some other states. Because you normally do physically demanding work

(construction) it is hard to say if you will be able to go back to that...or

maybe you will need some job retraining. My suggestions:

keep a daily diary of how you feel, what you see your limitation to be,

etc.......inc side effects

go to the Employment Office and apply for SS Dis in case you do end up needing

it

make sure that your doctor always knows what problems you are having that may

limit your work down the line, so that he can support you on this

I am not suggesting that you won't be able to work again, I am just saying that

you want to be prepared for whatever happens in the future and get the support

that you need. It might take some time to get stable with CML and your treatment

and get back to having energy. Getting healthy is your first job right now, so

line up any financial support that you can.

C.

October 3, 2009

,

I agree with you. all I was saying that he might feel better before

disability would even kick in. You must be out o work for 6 months in

a row before being eligible for SSI. then you have to fight like a

dog to get it. It took me 1 1/2 years when I was on Interferon to get

it! and that was with an attorney. I hope that he will feel much

better before that time. I, too, felt tired and had anemia and b12

deficiency for many years. It took everything out of me to complete a

full day in the operating room 5 days a week. I then found out that I

was gluten intolerant. Now after 7 moths of a gluten free diet, my

hemoglobin and hematocrit have increase dramatically without drugs! I

was diagnosed over 10 years ago!

On Oct 2, 2009, at 10:28 PM, Troxel wrote:

> Yes , I think it is good for to hope for the bright side.

> However, those who think it always works out that way, especially

> those who

> hold the power to grant disability, can sometimes make it hard the

> truly

> deserving to receive the benefit to which they are entitled. I have

> been on

> Gleevec for over six years now, I have struggled with anemia, iron

> deficiency anemia and now pernicious (vitamin B-12) anemia. I am a

> CPA, but

> working in that profession calls for a very high energy level all the

> time... it is just not there any more! I am better since I began the

> B-12

> injections but I am a long way from putting the green eye-shades on

> again. I

> don't know, maybe being 65 now has something to do with it?

> deserves a chance to devote all of his energy to fighting CML.

> If he

> recovers to the point he can resume work, he will be the first to

> know it. I

> hope the bureaucrats out there can figure out that we are all

> different.

>

> Troxel

>

> On Fri, Oct 2, 2009 at 4:45 PM, Orenstein

> <scrappygirl123@...>wrote:

>

> >

> > , Once the Gleevec starts to really take hold, you may find that

> > you do have most if not all your strength back. i was on SSI for the

> > first two years back in 2000, but that was in the days of Interferon

> > and Ara-C, when all I did was feel like I had the flu and slept

> almost

> > 18 hours a day. I am now back to work, not full time because I have

> > not been able to find what i want as a full time position since the

> > recession, but am still looking. good luck to you and let us know of

> > our progress. there is plenty of information for the newly diagnosed

> > inour file section. Take a look. Any questions, feel free to ask,

> > someone will have the answer.

> >

> > On Oct 2, 2009, at 2:43 PM, john laghlin wrote:

> >

> > > My name is ,after feeling steadily weaker over the last

> year, I

> > > went to the doctor on Aug. 25th, the next day I was told that i

> had

> > > luekemia and that I had to get to the hospital. Being without

> > > insurance I made the one and a half hour drive to Corvallis,

> Oregon,

> > > I live in a small town on the coast. The oncologist told me I had

> > > CML. I was put on hydroxuria and given three pints of blood to

> bring

> > > me back up to 9.0 in hemo. and since have had to go in for 2 units

> > > about every 12 days. Thru the program at Novartis, I received a 30

> > > day supply of gleevec, to day is my 2nd day on it, currently no

> ill

> > > effects. I have filed for and just received medical support and

> food

> > > stamps from Oregon. I have also applied for SS/DI, as I can't

> > > imagine being able to go back to work in the next year, I am 51

> and

> > > always in pretty good health and shape, but this has weakened me

> to

> > > the point I have to nap and I wear out trying to do everyday

> chores,

> > > My question is, is

> > > anyone considered disabled with CML, my Oncologist originally told

> > > me, when I mentioned to him that I had was going to file SS/DI,

> that

> > > he may be able to get me back to work in a couple of months, I

> > > worked construction, and currently cant.t see it any time soon,

> > > altho I pumped gas the last couple of months prior to being

> > > diagnosed, untill I couldn't do that either because of lack of

> > > strength, I had to try to make some kind of money, there is no

> cash

> > > assistance and Iam just wondering if others have experianced this

> > > type of sittuation, thankyou,

> > >

October 4, 2009

Hi , thankyou for the insight, and I agree with your thoughts on this

subject, because we are all differant in the way we may respond to treatments

and the times frames associated with them, I have always been a gamer and I will

push forward, but be prepared in case i take a step back. Thankyou , and

may your health be strong and steady,

________________________________

From: Troxel <richard.troxel@...>

Sent: Fri, October 2, 2009 7:28:09 PM

Subject: Re: [ ] Question about Disability