OMFG Katy!! I have been so wrapped up in my problems, I have not been keeping up with the boards or you and for that I am SO very sorry. I should have been there allot sooner, and please forgive me for that! Your rant also makes me angry, not at you but the system in general. I am still trying to get SSD, but yet a drug addict I know of has already gotten it and only worked one day in his friggin life! He spends his time trying to get whatever drug he can get to stay high 24/7. I know the system was given you major problems and you and Dale had to get divorced, but this other stuff is over the top! What do they want blood!! Oh wait that's right we CML'ers can't give blood! My god is it any wonder people are so pessimistic.
It has to make you want to reach across the desk at those offices and strangle the paper pusher when they tell you that sort of crap! I voted Republican, but have since became an idependent, since neither party is really doing anything to help those of us with diseases. Oh yeah sure they have that so-called RX program, but in Regina's case they so not cover Xanaxx so the cost of that alone is more than what she would pay to have the coverage. It makes no sense to me at all, and RX program should cover any and all drugs that are prescribed by a doctor. The only reason I am still walking this earth is Bank of America has allowed me to keep my insurance. Yeah it cost $232 a month but covers me and my son. And it covers my Gleevec, otherwise I would just have them put me up against the wall and shoot me. Because there is no way I could afford it otherwise. I do not wish anything bad on anyone because I am a firm believer in Karma, but I am so sick of people that scam the system, treat people like crap, and are just over all "bad" people but yet they always seem to get by. Then decent people, like you, as well as your hard working other half Dale get the shaft! I know there are many who are reglious within our group, so please do not take offense to this, but saying they have to answer for it in the after life just does not cut it with me. My view is there is a higher power, I am just not sure what it is and I do not believe in organized religion. Back to Katy, I wish I could do something to help, I sincerely mean that, I have been playing gypsy as of late traveling between Cincy and Ohio, until Regina and I can get a place here in Indiana. I am still in disbelief of the lack of compassion your getting from state agencies! I mean you showed them the foreclosure papers, and they want to hold that as an asset against you? The know damn good and well that even if you put your home up for sell it could take a year for that to go through and even then the bank would get allot of the money! It kills me how they now seem to think your rolling in money!! Well I am VERY happy you and Dale remarried!!! Congrats! I am sorry for everything your going through and I hope things get ALLOT better for you soon. It still just kills me that our goverment systems in place are broken because of people I mentioned that milk the system, while those like you and me that need it are punished because of them! I was barely able to buy my son Christmas, and Regina and I did not even bother trying to buy anything for Christmas. I do have a bit of lighter stuff to talk about... Katy I have found a great remedy for nausea...Alka Seltzer! It works even better than Zantec and faster. As far as the weed thing, I agree she is WAY to young to be using that, but all kids experiment, I know I sure did..rotfl. Just talk with your 15 year old if she will listen, otherwise ground her for a good ten years..hehe. In my humble opinion if they would just go ahead and legalize it and treat it like booze allot of problems could be solved and if they taxed it, they could wipe out the national debt..hehe. I confess I do smoke it but it really helps me be able to eat, and with nausea. I am not saying kids should smoke it but if it was treated like booze then it would be harder to get not to mention it would cause less crime if it were legal. I would kick Nick's butt if he even started smoking cigarettes..hehe Hang in there for me Katy, things will work out, surely to god some paper pusher in one of those agencies will feel like doing there job and give you a break. Tell Dale I said hi, and please take care, Terry On 12/31/06, [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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