To sum this website up, it is a peek into the lives of Americans on Medicaid--a mom and two kids, whio might not be together much longer, because Mom needs a heart transplant--after she clears hepatitis C.
Naomi Judd did, so it sounds easy; but the rates aren't all that great. Not even 50% of the people who use interferon agressively get cured.
And the kind I start now, pegelated interferon combo, costs $26,000 for a year just for the meds and needles (we use an injection pen).I am duly humbled that this shall be provided to me and not ungreatful when I seem excited about a better quality of life i thought I saw.
The facts, just the facts without emotion, since I was here in March (see bottom of the previous page); since I could email my friends es[ecially ones I've just recently reacquainted with> I'll start with good.
I have to clear hepatitis C to get any heart transplant and if I do, then I can get on the list and be ready if m ticker goes out. They check people 6 months after a response to interferon and those still clear are deemed clear, so I would be listed that soon after my year on interferon. You are always on it a year/ Yes I've started before. It was a less sucessful type of intrferon and I survived so I know what I'm in for this time and also that it will get better again someday, which dead certainty is heartening and sustaining during achy, fatigue-dominated weeks on interferon and rebetron.--
She has put me on an antidepressant upfront--Celaxa---- and I'll have a nurse coming round weekly and then biweek;y to take blood to make sure I'm not somewhere I can bleed to death from a paper cut or anything. A nice stroke of some sort of hind luck gives me a good riend who is currently being paid $15 an hour to take care of a lady on pegwho's also almost a nurse so she will be a comfort , a phone call away and has been reporting on her boss's progress and the lady only takes to bed 3 days a week so maybe I can get around this year too some.
Feed the kids a few days a week and stuff.
That's my medical news, and the heart transplant will be done in Gainesville Florida at the Univ of Fla hospital, Shands, so they are treating my liver diease
Shannon and his wife live up there so I saw them April 30 when we went up. He quit teaching 12th grade physics for a better paying scientist job testing river water for pollutants; his wife repairs clocks and bottles herbal remedies in liquid forms made by Herbs of Light up there in Alachua.
To get there from Tampa-Orlando -Miami you go through Payne's Prairie, the only prairie in Florida. It's real sticks up there, I mean lots of ticks. All woods a minute north of the campus on up, 22, 35, more miles of nothing, 2 televison stations if you don't have a dish.
I am one of those people on oxycontin the Florida government wants to watch. I get it for my disk trouble . I have been on the same dose all along, about 8 months, and feel no need to increase it. Drug abusers really go for it because it sells on the street for $20 a pill. On the Today show some concerned chief designer of the effort to stop oxy said there are characteristics well-known to doctors , of abusers--like, disheveled--
When my back problem first came on a doctor wrote for my files that I was "disheveled". I guessed it for some secret code for druggie because i wasn;t. at all,and had oly been on pain meds 4 other times in my life--when I had my babies, got my defibrillator, and got my hepatitis C in blood from replacing lost blood in surgery for endometriosis..
with that in my file I was then called "drug-seeking" by a pain clinic head and mocked by its nurses when I complained of pain.
I was not disheveled at all and 3 stories over the lying doctor's head was the beautiful stained glass window that graces the chapel at the Moffat Cancer Center which I designed and helped my husband paint and build and it with its well-designed sennses of solace and calm execution is not a sign of a disheveled butt. You know what I mean. So I am glad they finally give relief and I accept it humbly not feeling at all entitled to pain relief even knowing that the knowledge and technology and developement are availed of by many humans-- not necessarily for me.
I get it real well now, guys--wait till you hear how crushingly I got it.
In a minute--
More good news is, Mary can do extra credit to make the D and the F to Cs before school ends May 30.It looks fun--5 memos to her teacher about articles to do with science she's seen. I bought the newspaper (gotta have a good reason to buy anything, here--)and there's this article says, a cop accidently shot a john alongside the car- lot behind41 my house. The cops had set up a dummy hooker who waved her johns to the car lot's side street where the police boxed them in and arrested them. This john tried to scram and the officer went to tap on his shut winder with his gun and it goed off.
Why, what a coincidence--there was a hooker waving all these cars down my street that night and I went out and told her I had kids and to take it somewhere else. The cops were taking these guys one building over after that.The paper told me.
Not that I should go out there yelling at hookers for my kids. Especially Mary--she's making me type this in the dark.
Why I'm on her dive typing this is coming right up. You won't want to miss this sad but noble tale so stay tuned --
The next day the paper listed all the crimes around here and there were prostitution after prostitution at each intersection I can walk to and do for my paper, my sodas, my milk and candy treats for Mina--and so she and I can get out of the house, we often don't otherwise all day, if we don't walk for bread and cupcakes at the day-old store--
Did you guys hear of the man who's heart gave out and his defibrillator went off and his heart went out again 5 minutes later and he defibbed again and his heart was gone so it died agin and he was shocked back again and so his heart quit again 5 minutes later and again the defibrillator got him back and on and on all night long until he said enough! And asked they disonnect the zapper. So they did and 5 minutes later his heart gave up and he died.
No one had told me it would end that way but I guessed it. I can't ride my defibrillator forever. I need to be on that transplant list )
( Tx means transplant)
The next newspaper said a dead man was in a car at Broad and Florida and I'm lke, see, kids, I keep telling you not to ride your bikes to Broad. It's a block north and Florida is 2 blocks west, it's right at the projects.
Mary will be going to a magnet arts higfh school you have to have a talent to get in by--she got in creative writing,the most extensive high school creative writing program in Florida. 6oo kids tried to get in the school, for 200 seats. Mary is goingo have full semesters of nothing but creative writing. They work it like this: 4 classes a day a semester, each class almost 2 hours long. Math, science, lang arts and Spanish August to anuary. Then Creative Writing 1, 2, 3, and 4 from January to May. in 10th grade it will be similar, and on to graduation with published writings and able to write already for a living or get a good college thing going. And her college tuition for 4 years is paid already. She's going where I should have, could I have. This is all her own choices--the only talk with her I have about writing is, "Just a minute--I'm writing something" to her demand, and she'll go "what?" anI'll go "an outline" and she'll go "so am I! W'ere so much alike it's scarey!"
She's to get an award as best creative writing student in her magnet for the arts middle school next week-- she doesn't know it..
Marina is not being neglected--can't be--she is a very commanding presence, and full of cute mistaken assumtions and ideas.Ex. I homeschool her little behind, so I was throwing U.S. presidents at her and s was feistily not co-operating . I had given her several facts about 5 different ones and was now pop-quizzing her because she was hiding her sister's stuff and being obnoxious but didn't think she needed to study her lessons. So I go "George Washington--tell me 2 things about him." She stammered. "I don't know! " I got impatient. I mean, he's on a dollar, he's on a quarter--this one was a give=away. "What president was he?" I hinted broadly.
"Bill--Bill Clinton?" she guessed hopefully.
The bad news is just bad for me, at least, thank goodness. Anymore good news? Mindy left her husband after he couldn't seem to remember to work for a iving about a year too long. I've never seen anyone get such a long chance from Ms. practical Personified. I am glad she's up to looking after herself though. He was all ready to rent out the little house they own behind theirs (and sepaerated from theirs by a swimming pool ) and had fixed it all up real nice. shopping for accoutrements(Mindy of course) for a nice interior landscape from the lamps to the colors of the walls (she's not afraid of color). The houses are across the street from the Intercoastal Waterway, a serious course for big ships to the Atlantic.She just moved into the rental the night before the tenants came. What could Jerry do? He's got to let her till he gets whatever he gets in the divorce.
She's kind ofliving like me, her aggravating loser ex always in yelling distance and able to watch her have tea alone in her kitchen at night by sneaking around spying on her.
It happens.
Bob of course modeling Reverand Camden although he's never seen 7th heAVEN but just being your naturally one-level past the rest of us sort of guy, he gets a call from adopted daughter Shanna, 22 and going up river in a few weeks for 10 to 20 years for manslaughter , and she wants himto come out and take her stuff and drop it off at the Salvation Army and take her to her maternal grandmother's to stay because she has nowhere else really although she doesn't put it like that.But even I know that granny is toxic for Shanna and Bob knows this well sohe goes out and brings Shanna home instead.
It's an awkward realtionship--he adopted her when she was about 4 and by the time she was 13 he was throwing all these boys out she sneaked to her room eery night. Her mom divorced him and took off with her and his full daughter and by 14 Shanna had a baby and by 18 was beating p her mom and ker mom had restraining orders keeping her fromcoming home. After she killed that lady at 21 her mom did ot let her move back home so she got an apartment and worked and tried and is trying. I've seen articles about the stoic stockbroker city coucilman about to go up for a few years for taking bribes, getting his affairs in order and waxing philisophical, but not any about a young lady walking around, perhaps pacing her dad's huge kitchen, unable to drive to leave that house 5 miles from the closest magazines and food for sale,and he's always working, you know, 14 hour days, 7-day weeks, ironically mainly to pay her child support to her mom, who did not support her the years he is paying for, the last 4 years, when the girl was 18, 19, 20, 21, and 22 and not in school or living with her mom at all, and not getting a red hot penny from her mom except by what CDs and stuff she stold from Mom and hocked, or whatever horrible travesty she did to Mom that made Mom keep rolling out the restraining orders. It is so easy to proove she didn't live off Mom, with those restraining orders and all, but Bob takes the high road, isn't interested in petty court fights to dodge providing for his daughters, his honor being him bigtime. And his courage when shit calls for allowing compromise with dignity but his code won't allow it demonstrates impeccable integrity. He won't fight low-class Robin the ex-wife, won't proove she never supplied a cent for the daughter since she was 16 cause that's a fight to get out of providing for the kid and he doesn't rresent that. he resents buying his ex-wife lavish international vacations n she makes twice what he does and has lived with a working man for 6 years and only doesn't tie the knot because it would cost her all that child support. And he could proove the guy's living there too but if he bothers at alhe seems to be trying to get out of his duty to Shanna although any money he gives his ex has nothing to do with Shanna and neither goes to Shanna at all or reimburses anyone for the past care of Shanna who was woefully neglected in her teens, allowed to live with a man who was 39 when she was15--in her mom's house! She was gifted; I wonder if her mother thought it was synonymous with genius in all areas and thought such decisions Shanna made at 15 were sound and intelligent...
Anyway, Bob and Shanna have not talked much in 10 years; she ever remembered him on his birthdays or Christmas during her high-flying years and never called to reach out. I lived there over a year and she only came by one time--t get her childhood keyboard, no cheapie, and probably to hock since she went to graeat over-done lengths to establish that her brand newmale friend twice her age and with messy long hair and wrinkled clothing was interested in taking up piano and she wasn't going to sell it or anything--the telltale words--I'm not ______ (whatever the listener never though of at all )--
Bob would give her $75 gift certificates to expeso department stores and while she wasn't saying thank you or calling for 5 months he was fretting that h'ed committed an etiquette faux pas giving her $75 when it was probably not kosher to go less than $100 or something and she felt dissed and that;s why she didn't say thanks. So he'd give her $100 the next year although she hadn't thanked him for the $75.
He put his home on the line for her bail.
He said he and she went fishing in the backyard pond the first aternoon together. You could hear the marvel in his voice, that this is happening, he has wanted to have a relationship with her for so long. I am so glad for them both. Now she won't miss out on him; no one should, but I am glad all the great and wonderbar young ladies have no clue o him because then I alone know what a great catch is here unattached and willing to be loyal and true, and good-looking too. Right now well-off old widows remodeling their kitchens or fireplaces are the only people who know he exists. Lucky for me cuz I get his thoughts and sweet heart.
He's just perfect. he was when he took a month off to liveand if he ever gets time off again he's wonderful. Him always working til he gets home cranky sunblasted and exhausted and falls onto his bed clothed and passes out is not.
But I wait because I know the side that is and nobody in my day to day errands comes anything close.
So they all called me on my birthday, Jay, Dan, Bob, I'm just another weirdo who's best friends are her exes.
This is starting to run something like those emails you-all send me, ticking off my possible blessings like memories of licking Kool-Aid powder off my
fingers and watching Wagon Train--
But I've got good, long-time buddies , and my mind--important, as you'll recognize better uno momento. I got a good book for my birthday April-- Nickel and Dimed, by Barbara Erhrensomethinghaughty-soundingGermanl
y.
y.
I read one of the escapades in Harper's 2 years ago. She takes on $7 an hour jobs undercover to expose the harsh conditions such laborers endure . The topic intrigues me plus she has a good eye and engaging style.
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Any of you with small people roommates--Robak, Friss, Irene--unaware of 7th Heaven-- needs a look-see, even you Rainbows,Taj--
it's a Warner Brothers Station show with reruns in syndication -- comes on in the Tampa area every weekday at 11 a.m. on 44 and every Monday at 8 p.m. on 38. It's family fare, strong cast, principaled but realizes you better pick your fights carefully, so the teen girls can dress in dresses too short and make-out on the family couch side by side with new guys. Yeah it sounds slutty but they're the preachers' family and they're chockful of morals if you watch a spell.
And the bad news:
I can't save enough, with my high electric bills, to side the house, to reduce the electric bill, so the cycle will continue.
My hard drive crashed 3 months ago and I can;t afford to have someoe look at it YET. I'm never going to afford someone to look at it. I am pretty sure it evaporated though, and all is lost. It is totally heartbreaking and I barely make each day .
And--horns and trumpet-- I buy something, from k-mart, a chair so my teen can stay all night at the Cancer Walkathon she's walking for cancer for, the rich lady, her boyfriend's grandmother, who's invited her to it and asked us to let her, says we need this lawn chair but doesn't offer to get us one. So I buy it, and my sister's like, you can return it the next day, but I'm not like that, so I aim to keep it for years, and it breaks the next day. The leg busts off, And KMart won;t take it back or exchange it cuz I've lost the receipt. There were a lot of other things I needed to spend $20 on and I get moody. My cat bites me again--Siamese are fickle when they're starving. The Animal control wants proof of not just his shot but his tag, which I couldn't afford to buy. They give me 48 hours. I still can't buy it. It's impossible. So I have to keep him inside 10 days so we have to put the other tom, a lazy, slow old guy, out. As he's sleeping in our yard , the car-lot dog comes up and carries him out into the road chewing him up . We get him away but he seems 75% dead, as if a lung's been pierced for starters, and we have no money. So he's dying on our bathroom floor. This happened on his owner's 14th birthday yesterday, and she got no gift for her birthday or any dinner, either. We had cereal but no milk and she won't use the powder kind.
Because I have only one hand again the house is getting cluttered, messy, dishes piling up. Their dad is hanging around under pretense i need him with one hAnd and all, but he doesn't do a thing. I have to scream and cry to get him to take out the trash and then my oldest says something insulting about my mouth. Then a friend who promised to get me out of this and better my life emails me that I am nasty and sordid and he seems as if he is not going to help me. Now why would a person get nasty with someone about to give them nice futures? I think someone must have emailed him saying they were me. I of course never would have gotten nasty with my only hope out of here. But i am in a foul mood, everyone says. My ex is a good artist but his comfort level with clutter is way different from mine and he lied about that to snag me and i just find myself unable to get over that. And live like a pig. Did I tell you, after Mary's rich boyfriend's grandma and dad saw Dan's trashed out back yard here they never let Bobby call her again? I begged Dan for a year to get his trash out of there, but he is just a pig, It is ruining my sensitive teen's social life. I have to get her out of a yard he can trash as fast as I can.
He sold his back lot in March and they put all his junk on my property instead of his, including a trashed VW bus. He is not here to clean up one speck of that mess, or help me with my house cleaniong , but I can't get rid of him, as he then sits on the trampoline all forlorn and his baby cries and yells at me to let him in, She is vicious with me noww when I don't want him on my house, telling me it's all Me. He's making her live through the divoce all over again, cuz she missed it at age 3, by making this go on like this, cuz he owns half my yard like this and can be in it any time he wants. He has no friends, no life, so is always here, It has been eating me up for 2 years. I redused to start interferon the first time til I legally got him out of my house which he was saying, as his house too, he could break the doors off anytime he wanted to-- now he's always in his yard monitoring me.
My oldest needs a dress for her banquet this Thursday and there is no no money. She missed her class trip to MGM Studios, which she's never been to. last week. And it ges on, being unmanageable, nobody middle-class wanting to change it because it works for them.
