Work until I drop

[Jack_dup1]

I was diagnosed 3 years ago. I have continued to work, even though it has been very hard at times. I have no work in my home state, I fly to other states and work for five days, every other week. I do Field Service on Toxic Gas Monitors and carry a fifty pound tool case. It has just become to much for me. My latest counts are WBC 36.9, Plt 69k, Doc says insurance probably would not approve disability because I’m not bleeding or being treated for the CMML, even though there is no treatment. This one I can’t even joke about.
Jack

[Dennis]

Jack,

I sympathize with you. While the MDS is fairly stable thanks to Vidaza, it’s difficult to keep up full time work AND chemo, since the chemo is taxing itself, and sometimes I flat out don’t have the energy. But the doc doesn’t feel the ins co would go for even partial disability. Oh well. Thank God I can at least put in the effort.

D

[patti]

Jack,

This is a shot in the dark – but it’s the best suggestion I’ve got. If you’ve got life insurance and your doctor will say your CMML is terminal, sometimes life insurance companies will give you up to 1/2 of the value of the insurance. If you could live on that (even if you had to pinch pennies) until your eligable for medicare that might help. At least maybe you could quit working.

Do you have a house with a lot of equity? Maybe a reverse mortgage (I don’t usually suggest debt but sometimes you gotta do what you gotta do) if you have a house with equity?

Those were the only two things I could come up with for now. I’m sorry you’re at such an in between spot. It makes an already difficult situation even more difficult.

take care

patti

[al’s wife]

Jack,

Have you tried filing for Social Security disability? We filed for my husband when he was diagnosed w/AML. As soon as they hear the word “cancer” they usually accomodate you pretty quickly.

Good luck.

Lynn

[CarolineG]

Jack,

Is there ANY other field of work that you could get into at home? Perhaps working in a hardware store or something of that nature? Maybe a consultant in your field? Even a couple of part time jobs close to home instead of travelling away might help? I wish I could make more suggestions. I feel terribly for you.

Blessings,
Caroline

[Jack_dup1]

Thanks for the response, I know there are other options, I’m just mad at the system. The Doc says my immune system is failing but it is ok for me to get on 10-12 crowded airplanes a month and be exposed to every germ out there. In regards to using life insurance or the house, that would be taking from my wifes future just to make things a little easier for myself, I feel bad enough about ruining her future as it is. (she dosen’t read the posts or I wouldn’t print that) I’m better off health wise than many on the forum, so I can’t whine too much.
Jack

[Suzanne]

I qualified for Soc Sec disability with no problem with MDS-RAEB. Just supplied them with a description of the disease, the FAB life span chart, a copy of my bone marrow test results and a copy of my blood counts showing that my white count was low enough that I should not be out in public. They put my request through on a rush status.I supplied all the information I could with the application forms figuring that the medical personel reviewing the case might not have ever heard of MDS. I never asked my docs about disability although I am sure they cooperated if they were contacted. A volunteer that the AA-MDS Internation Foundation put me in touch with told me to apply. It had not occured to me since I could walk and talk and had no visable or physical disability other then that an infection could do away with me.
Don’t know the rules about private disability insurance but a friend of mine just qualified with a fractured hip that made it painful to more around.
I have also been told that there are attorneys that specialize in helping get you through these systems.

[Dennis]

I’m kind of in Jack’s situation — too “healthy” for disability, but sure could benefit by not having to keep up this schedule. I’m eventually going to have to have an sct, so at that time I’ll most certainly go on disability. Our coverage has provisions for partial disability, so hopefully I can use that to ease back into work.

D

[Jack_dup1]

Dennis,
Maybe you will only have to work three days a week during your sct. They can build you a bubble at work. You do know I’m kidding? my humor gets me in trouble.
Jack

[Dennis]

Jack,

Funny you should mention it — I HAVE thought of telecommuting from the SCT ward — after all, they do have wireless internet access!

I actually have two jobs — computer programmer and church musician (organist). I do the computer work so I can do the music, which is what I really love to do.

D

[Bkwits]

Hi Jack,
Although I don’t have MDS (my husband had CMML), I applied for Soc Security disability at age 63. My disability was, and is, Meniere’s disease. My condition is not life threatening, but prevented me from functioning any longer in my work. It took a few months, but I was approved and got back pay for the time I waited. My neigbor, who was 64, and has a serious breathing problem, had to go to a Soc. Security doctor for an exam, he was approved. Maybe it is easier when one is near retirement age. I think it also depends on who you are dealing with at Soc. Security.
Barb

[Jerry]

Folks …

I have applied for Social Security disability and was told that even in the best of times it could take 5 or 6 months to get a response … I don’t think that it is necessarily your present physical condition that determines your ability to collect, but the underlying condition that you have … I would recommend that you file as soon as possible while you have the strength and desire to do it … Somehow, Suzanne got rush status and was approved … maybe we can too … good luck …

Jerry

[Jack_dup1]

I really think yo have to wait5-6months regardless, if you have been off work for example one year and apply, they will make it retroactive for six months, so there would still be a 6 month waiting period. I think Suzanne had been off for a time when she applied.
Dennis, I didn’t know you were a programmer, most programmer’s I know, already work in a bubble. Lots of luck.
Jack

[Suzanne]

It wasn’t 5-6 months to get approved. You have to remain disabled for 6 months before the start of benefits. However the 6 months ran from the date you were considered to have become disabled. Even tho I applied later.I was declared disabled as of the date I stopped working (the date I put on my application as the date I became disabled) Can’t remember but I am sure I had blood test results for that period-they were testing everything pretty frequently at that point.

[Jack_dup1]

Thank you Suzanne, that is what I was trying to say, although poorly.
Jack

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