Venting.......

[Guest guest]

I just called to speak to the lady who is determining my approval or denial

through disability. She stated to me that her recommendation was going to be

that I get a " sedentary " job. I re-explained to her that, that is the job I

just quit per my doctors recommendation as I wasn't able to perform anymore

and recurrently being placed in the hospital. I lost it on the phone. I was

crying and trying to explain what I live with on a daily basis. I guess

what upsets me the most is that I am entitled to this disability insurance. I

have paid into it and worked hard thus far in my life and I know more people

then I'd like to whom have got it approved because of " back pain " alone or

fatigue alone.

I have every imaginable side effect thus some that I don't want to go into

detail about from Gleevec to the point of " being intolerable " to it by 3

Oncologists but since my body is responding to the drug, I have been kept on

it.

I live with the sife effects because I am " living. " I need more years to get

my 3 kids grown. I am very frustrated and at a point where I don't know

what to do. I am sick of justifying myself and this disease to people. I told

here today that this isn't breast cancer where I take chemo for 6 months and

get better and no longer need treatment. I have to take this every day, rain

or shine until I die. I get no recovery period to bounce back. (I am NOT

down playing what people have to go through with breast cancer by any means)

The pain and fatigue get to be unbearable at times. I guess I am just

frustrated and needed to vent.

She told me her husband had acute leukemia and is now doing fine. His

fatigue got back to normal 2 years after he stopped his chemo. I stated that,

that was great and I am glad he is better but again this is chronic leukemia

and

I will not stop the chemo and get that break. The fatigue is daily......

I don't understand why they don't have people that know the disease looking

through all this? No wonder people get denied. People that really need it.

She told me that " I must be doing fine since the Doctor isn't referring me

for a transplant. She doesn't understand the disease.......... I will fight

this.

Sorry to vent but I do feel a little better now....

35

CML 5/13/05

Gleevec 800mg

Wife and mother of 3 (11,8,6)

************************************** See what's free at http://www.aol.com.

[Guest guest]

hi jennifer,

i know just what you mean going thru the same thing have been out

of work for 9 months. im 42 worked all my life now cant help surport my family

im upset with the system and myself just because i feel so helpless. our gas at

home just got shut off. ive tried every sourse for asstance i can think of but

having to wait for my court date for disability. this is even causing problems

with my wife and myself. hope you can get help soon if you hear of any programs

for other help please let me know.

have a

good day we all deserve it,

david willingham

dig.june 06

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