Re: Venting.......

[Guest guest]

Dear

I have no words to help so am sending a big cyberhug.

Keep fighting, girl

<HUGS>

Love and light

Annie

's mom

www.livingwithcml.blogspot.com

>

> 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]

Hang in there . I know your frustration. They just don't understand

what we go through.

:{

[ ] Venting.......

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]

jane i can realy feel your pain and frustrations, was dig june of 06 (fathers

days what a great present lol) with cml i have every symtem known to man from

gleevec also in the 2% of cmlers (so my doc tells me) that has compartment

hemregious from cml.On march 10th (my birthday) i was diginous with MS.i have

been out of work for 10 months my fiance is having to surport us,which is

killing me thats my job the way i was rasied.We were almost evectited from our

home this month. I have no family to get help from all these agencies that say

they are there to help don't.I have even called my congressman for all the good

that has done lol. I now am having to be treated for cilnical depression, from

the strain. I have vented to my fiance in the past and unfortionly she took it

as an attack on her so now my whole world is in jepordy, thats the worst part of

this i now no longer care about my health just getting my family life back to

where it should be. I can not bear the thought of

lossing my finance and my daughter to this.ok now i have vented.

thank yall,

david willingham

400mg gleevec per day

225mg effecor per day

75mg lyrica per day

.25mg xanex every 6 hours

---------------------------------

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Check outnew cars at Autos.

[Guest guest]

Sending hugs to you . I'm hoping things start looking up for you soon!!

:{

[ ] Re: Venting.......

jane i can realy feel your pain and frustrations, was dig june of 06 (fathers

days what a great present lol) with cml i have every symtem known to man from

gleevec also in the 2% of cmlers (so my doc tells me) that has compartment

hemregious from cml.On march 10th (my birthday) i was diginous with MS.i have

been out of work for 10 months my fiance is having to surport us,which is

killing me thats my job the way i was rasied.We were almost evectited from our

home this month. I have no family to get help from all these agencies that say

they are there to help don't.I have even called my congressman for all the good

that has done lol. I now am having to be treated for cilnical depression, from

the strain. I have vented to my fiance in the past and unfortionly she took it

as an attack on her so now my whole world is in jepordy, thats the worst part of

this i now no longer care about my health just getting my family life back to

where it should be. I can not bear the thought of

lossing my finance and my daughter to this.ok now i have vented.

thank yall,

david willingham

400mg gleevec per day

225mg effecor per day

75mg lyrica per day

..25mg xanex every 6 hours

------------ --------- --------- ---

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.