Hi Judy,
Thanx for the number I will try.
Hugs,
Katy
--
"The innocent and the beautiful have no enemy but time."
-William Butler Yeats
"Women and cats will do as they please, and men and dogs should relax and get used
to the idea."
-Robert A. Heinlein
Katy
DX: 10/03
#677 in Zero Club
xanga.com/katybug45
-------------- Original message --------------
From: judy <[EMAIL PROTECTED]>
Hi Katy. Down in the dumps also todayand for the past few days. Hope things are going better. Did you contack Novartis and see if they would give you Gleevec for free? try they might suprise you. The phone number is 8668845906. Good luck and let me know how things turn out.
"[EMAIL PROTECTED]" <[EMAIL PROTECTED]> wrote:
I know I havent been on here in a couple of weeks but I really need to
vent and since what I say wont directly effect your lives you are the
best candidates for me to pour my heart out to. I am sooooo angry
tonight, I really dont know exactly why, at least I cant put my finger
on any one thing but I just am.
You all know my story, three years ago I was diagnosed with CML, but
it was okay because not only did I have my husbands insurance I had
Medicaid, sooo, I could afford gleevec. Well about three or four months
after I am diagnosed the state says your husband makes too much money
($2200 a month before tax) so we are taking your medicaid. We barely
made it from paycheck to paycheck, so my Dr. has a suggestion, GET
DIVORCED! Then they cant take it cause they cant count his income. So
we did. It has driven me crazy for three and a half years!!! BUT as
everyone said it was just a piece of paper and in the eyes of the Lord
we were still married. We never seperated and never took off our rings.
But without medicaid we could not afford even the 4 or 500 dollars a
month for gleevec so it was get divorced and get your meds or stay
married and die. ANYWAY............ so then you guys know that this
summer or late summer I relapsed. Not too much just a little the doctor
said and left me off of gleevec for about two and a half months because
of the pain gleevec was causing. When he did a gene study again about a
month ago low and behold I was MORE positive so he says start taking
gleevec again so I did. This time around the nausea has been at least
three or four times worse then the first time and of course the pain
has returned in my arms and legs so I dred going to bed because it is
worse at night. But I am taking it religiously, in the middle of all of
this my middle son (16) informs me he is agnostic, I was raised in the
south in the bible belt, teethed on a penticostal pew, and that was one
of the worst things he could tell me or so I thought, now he says he is
(and I really do not mean to offend anyone by my reaction it simply is
not in line with my beliefs) He says he is Budhest (dont know exactly
how to spell that) okay my mom goes into a tail spin on that one. She
believes that my whole family is hell bound anyway, a week before
Thanksgiving we get served with foreclosure papers. (okay someone stop
the stress train now I need a break) so we decide (the company kept
giving us the run around till we were six months behind when we only
missed one payment to begin with) we decide we arent gonna fight it! I
find a house a really cute little house three blocks away, on Dec. 9 we
move. The rent is 150 less then our house payment and the utilities
should be lower due to good insulation and with my SSI and his
paychecks we can do this. Well I call the SSI office a few days before
Christmas to tell them I have moved so they say come down so I do and
bring the foreclosure papers. Well guess what? They are just starting
the foreclosure procedure which could take anywhere from 6 months to
two years so the state looks at it like I have a $75000 asset I could
just sell and so I am inelligible for SSI and Medicaid once again!!!! I
get home on the verge of a nervous breakdown and get a call from our
car loan people, they are gonna repossess our car because we didnt make
a payment in November and the reason we didnt is because I applied for
a defferrment because we had to come up with first months rent and
deposit and utilitie deposits. I just went in and laid down next to
Dale and just bawled. I said ya know what if all this is gonna happen
anyway we might as well get remarried. He said but what about your
medicine and I said well I will die married and happy!!! I said I dont
know honey but maybe we will just have to trust God for once. So
Thursday the ONLY good thing that has happened lately Dale and I got
remarried!!! So now when I talk about my "husband" I wont feel like a
hipocrit. What am I gonna do about gleevec ??? I dont really know right
now, I have an appt. with my Onc. the 14th (after that I dont know
about even affording a doctors visit) and I will fill him in and see
what he says. I know that if he wants to he can keep me in samples. At
least I think he can. OOOOH yeah and ON TOP of allllllll that I found
out that my 17 yr old neice took my 15 year old daughter out this last
Tuesday and drove around with her and my daughters friend and one of
her own and bought some weed and got my daughter to smoke it with
her!!!!!!!!!!!!!!!! I am sorry I am not meaning to cuss but the last
two months have just been HELL on Wheels for me! Now why am I angry?
hmmmmmmm have to think about that one, maybe its just because I havent
had my hormones in over a month!.........I am sorry for ranting and
raving on here I know that there are people who have it worse I am sure
but thank you for listening and giving me a place to smash plates
against the wall and no one gets hurt by the shrapnel.....*S* I love
you all and miss you and hearing from you, I hope that everyone else
had a wonderful Christmas and I hope they have a safe and Happy New
Year. I step down from my soapbox now and leave it open to the next
frustrated CML'er..........
Hugs,
Katy
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