I HATE DUIS -WHY- |
Marina is 7 now and Mary is 13, and I am still here, two and a half years longer than the doctors at Tampa General said I had. I hope my friend Suzanne's sister Erica, who has lung cancer and a similar 1 to 2 year prognosis, has the same fortune I have somewhere stumbled upon and worn like a talisman. Nothing can be wrong now--I recieved the 4 more years I wanted, and all the rest is just the parade. Unfortunately, interferon causes depression in over half its knowers, and I come from a rotten family. Did I say? I don't mean my grandmother Young, who I just found out at the Ellis Island website came here in 1907 from her home someplace in France not called Marseilles (as she always maintained), with her little brother and sister, an older brother, a strange person with her last name and hometown and ten years older than her at aged 18 and possessing the first name Marie , and Grandma's mother, then aged 38. All of which told me that my great-grandmother was 30 when she had her second child ( Grandma had her first at 20), and Grandma's father wasn't with, when the kids and mother came to America ; and the elder girl was signified a child of the mum's on the manifest, just like all the rest--did Grandma have an older sister, and why was it hidden? I am just beginning to crack this one! But Grandma's son is a hermit who dislikes everyone---his wife, ditto plus neither were nurturing to their offspring but remote. I have their only grandkids but if I call them (they never call me), they say so what did you call for? I say, oh, just to see how you are and say how we are. So? They say. So what? I say puzzledly. "That's what I say," my dad will then say. His wife is even colder. She says to Mary every time she sees her"My you've gotten big!" I told her last May in case she wanted to get Mary some clothes for her birthday, that Mary wore size 16 pants now. I told her again at Christmas and told her this year that Mary was in the junior department. For her birthday 2 weeks ago Mary recieved a pair of beautiful embroidered children's size 12 blue jeans. I think, well, the couple is 80 and 73 years old! But they just had to ask me again, no? It's not easy to blow off. I am the kid's only other source of clothes and my SSI check goes totally to utilities and food every month. Monday June 11 I really really finally start my 365-day interferon treatment. If it clears me of the virus--and I will be on half of the minimum dose known to work 30% of the time---I can get my new heart 6 months later, putting us at about Christmas 2002 and the following 2 years, since it can take that long for them to come up with a heart. Meanwhile science has been devising alternatives such as injecting arm muscle into the heart to allow new tissue growth in the heart, which is being done by the experts at the place that treated me like royalty, the USC people at the Doyenne Eye Clinic in downtown L.A. (Overlook the peculiarities of that sentence--that's where famed USC cardiologist Uri Elkayam has his office. I don't know that he is involved in this,but I'd trust him. He gave me my wild hope of living until 2009). I haven't been able to get out of bed for 5 days, if you wonder how bad I need that heart. Bad enough, you know, to give myself joint and muscle aches all over my body, and headaches and chills, and possibly depression, for a year to have a 30% chance of qualifying. I attempted to package it pyschologically to make it through and then had a 5 month wait I didn't anticipate while my primary doctor played God. Primary, you know, the guy who has to dip his hand into the Medicaid funds every time I see a doctor who can actually treat me. His name is Shah and he makes me see him to see anyone. He treats us like cattle, not people. He has signs all over his office"A referral takes time to process--please expect to wait a minimum of 5 days " and "No medicines will be prescribed over the phone" and "No referrals will be given without an office visit". He has never one time asked me how I was, what I can do-- they weigh you and take blood pressure with the ancient cuff and your temperature with the old kind of thermometer. Period. A brokerage through and through. Well, this geek said I could start my interferon in March, he'd request labs, call for the referral in a week. Then each week the office said he'd left nothing, no referral, they'd have to ask him--finally they said come in or he won't do it. I went in and he said "I told you not to use Shands doctors for your liver." He had told his wife maybe, but not me. " told you it was stupid to do this through them--they are too far away." "Hey look, "I said,"You said this was ok. If it wasn't, I was suposed to find a new primary weeks ago.You held up my therapy.You know I'm getting my heart transplant at Shands. Their liver doctor is working with them on this. This idea came from my heart transplant program. I'll have to live in Gainesville eventually to be near when they get my heart. I need their hepatitis doctor. She's the best in the state. I will terminate any other doctors that get in my way." "Ok, Shah says, You can go through Shands, and I'll order weekly labs because of your heart, if you go see a local liver specialist and a psychiatrist first.Those are my requirements." "Why a psychiatrist?" I said. "Because you are worried about depression." "Well let's just see if I get it." "No, I want one to see you first,"he insisted. I was able to see the local gastroenterologist he referred me to --an Indian like Shah--that week. This doctor, Dr. Presaad, said very few get cured on the whole reboviron (interferon plus another drug) dosage, and half the dose would be hopeless. "I don't understand why anybody would put anybody on half the dose when the whole dose only works one-quarter of the time," he yelled at me. "It can never work. Why are they bothering/" Then he said "I guess there is no other chance. The alternative is no hope at all for you. I guess they just think trying anything is better than trying nothing. But it won't work. it is unheard of--no one has ever responded to a half-dose, no one." I was about ready to shuck the whole idea, and just die like I'm suposed to have to, when I called Shands and they said "There's a lady right here working in this office who was on the half-dose and she has been virus-free for 6 years. he doesn't know what he's talking about. We're the experts, not him." So I've decided to be dasterdly ill for a year in the hopes that it isn't my last year and I'm not wasting it all being ill, but that the experience will gain me many more years. So Shah writes me a referral for a home healthcare nurse, to teach me how to inject the drug. I come home and call the place. "He did it all wrong," I hear , for the fifteenth time (his referral for my liver biopsy was wrong, and my mammogram, and my labs--). "His office is suposed to call us. Have them call us. We don't let patients interpret orders." But they stopped answering their phone half-an-hour early, and everything has to wait out the weekend now. I still have to start the drug Monday, although I never saw a psychiatrist.----(Because you go once to see a video, which I did, then they see you a month later to draw up your mental health needs plan --my appointment is June 24, almost 8 weeks later--and then they set you up your appointment with your psychatirst at that time, for about a month away. So Shah finally relented on that obstacle he put on the course out of perversity to begin with, and he's letting me start the interferon before I see a psychatrist.) I want to go out t with my kids before I can never get out of bed again. Have Mindy over for lasagna, cruise on Dan V's Harley . I expect the worst while I hope for the best--- My life, insignificant to you, merely a chapter in the lives of my friends, totally engulfing, seamlessly braided with , the lives of my two little girls. The Web is 2-tiered now: Those who can join Classmates.com and keep their free websites after the provider decides to charge them $200 a year for what was free for 3 years; and those who can't. OTHER UPDATES Shanna goes to another bond hearing later this month--- Denise-Berniece won on appeal yesterday, and I thought of why I even cared. I depend on my police department to be as rational as I am. Read the following articles and you can see how they are like an emotional organism. It's scary. Also: News! Life doesn't give you a break while you're on interferon. |
Fun A Sundance Channel Presentation co-starring Renee Humphrey and Allysia Witt |
This movie haunted me because I had not in a long time thought about a corollary me that I had going in junior high for awhile and confronted by her in opening up to this movie I had a variety of deep emotions. |
The collolary other girl was Annie Gulewich. photo 1970 |
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If I name one movie or documentary you liked, you'll like all of these: Crossing Fields (Reedy Gibbs, William james Jones and Meadow Sisto), Hideous Kinky, Benjamin Smoke, Trans, The Cream Will Rise, The Story of Adele H., Trans, Poles Apart (the 4-women expidition to the south pole), Joe's So Mean To Josephine. They all touch upon something I've known and not articulated. I am so tickled that there is a Sundance channel. What'd I ever do to deserve it? "Somwhere in my youth or childhood, I must have done something, something good...")(The Sound Of Music) So many fascinating character studies!. |
It's late Saturday night.The tucked in girls are sound asleep, the dishwasher has gone off, the pets make only ocassional sounds, like the popcorn bag when it's high time to get it out of the microwave.My hard drive sounds like a crocodile or rough bowels. Bottle rockets whine down up the street.. half the house is clean (that's the way it always is). I want everything clean as possible before I don't feel good.There was a picture in last Sunday's paper of a he-she smoking crack in front of the garage across the street, which was torn down a week before the picture came out. The article said "....a house near Cleveland Elementary School..." I'm right up to it; I hope crack addicts and men mad that this blonde lady they spent 15 minutes with last week is, according to the paper, a man, don't think it's my house. I love my pupil. She comes up with such zany ideas. I'm all geared up for this, for change, for what's ahead. Except being with friends. Bob was so tender tonight on the phone. he said we need to swing some time together and do something here before I'm bedridden.I asked him if he was going to stay the night on his couch he was on, as he seemed to be drifting to sleep, and he said "Why? You coming over?" And we both laughed, because I have no car, and the kids, and my ex-husband lives in his conversion van in my driveway to monitor all my moves, and Bob has to fix his leaky skylight and mow his big lawn and fix his hottub and his parents' soffits and string his guitar tomrrow, because he starts a tiling job Monday and etc etc .There are 5 minutes a night we hold a telephone and make light of each other's plight and I think of my breast against his chest and he thinks of my breasts into his chest and we sigh that Now Is This.We say goodnight and cuddle in our sleepy minds. Then I feel wanted. I feel woman. Female. Child. Sexual and nurturing.Warm and excited and like singing.Touched and courageous, filled with self-acceptance. I can tell by his voice He's here for me --romance is still in my world. I know how lucky I am. He wrapped his legs around mine all night long, the short time we had each other in person. He says later this week, gotta meet, go out to eat, but call him tomorrow. That's because he has to talk with me every day. And me with him. "I don't wanna cause you any pain, I just wanna love you, I don;t want to mess up anything,I just wanna love you, I know you think I'm kinda strange.." Snow Come Down," Lori Carson , I heard it on a Jennifer Connally movie where her guy loved her to death and she died or faked it and came back one more time. You could see the saliva traveling between mouths. I lked to look at them, though. I like to remember Bob and Deanne. "Joe's So mean to Josephine ", a Sundance Channel movie this month,was a lot closer to what we had, though.The adored male body, the chick who can't not touch. The "Go back to your little friends" and smashing of objects was us too. But he doesn't have to like the kinds of films I like. I never shared a passion with anyone before, why start now? I just have mine own and he is one. |
Prize! Contest! Enter any of the 10 contests 1. Find the other 2 guestbooks on this site that aren't the main one and email me their urls. Hint--one's for my boarding school and one's for Hank Carr. Yep! Lot's more guests you haven't read. 2. Find the object I own pictured on this site with Ted Williams signature 3. There's nudity where? Don't even send it if you're looking for that breast-feeding pic's url! 4. Hit "Print Screen" and save it as a jpg in your photo application, then email it to me so I can see if you are using the duh original Windows interface or go cool. Mucho prizes : least inspired, neatest-looking, purdiest, and oddest way to see your computer's biz. Example: |
"When you love somebody, your eyelashes go up and down and little stars come out of you." Karen - age 7 |
--from the internet |
5.Contest 5: What did Mindy yell when she read the part above about Bob? 6. Where are Gasparilla, The Strand, the Au Sable, Uri Elkayam, and the Jannus Landing mural? 7. Grand Prize Contest-- Where does Jim West of Weird Al Yankovic live? Right click on a picture of his house on this site, save it to your hard drive, then email it to me for the grand prize..(It can be deduced from this site!) 8. If you're so smart, what's my social security number? 9.How many letters are on this website that are about magazine subscriptions? Where did I get them all? 10. How many pages are on this website? |
Prizes-----There are 9 prizes and one Grand prize. The 9 prizes are 9 webpages linked to this site devoted totally to you, with graphics, animation, and any java applets you want, and links, etc. (The first time I ran this contest, the winners were Dan Voelker, Irene DeRosier, my daughters, my ex, Bob, and my twin. This is cool if you are Bobby Friss or Johnny Lyon, less so if you are my twin or a shy, private person. Alternate first prize is a web page about your favorite movie, ancestor, N-Sync member, or keyboard cleaner. The Grand prize is I'll write a young adult novel with the street the main character lives on named after you and her school named after your crush or spouse or whoever you want. And I will, too. Truck on! |
The thirteen got several awards at school the end of May. Here she is being recognized for her work in art. below, she just recognizes me. |
SHANNA. |
Web Poll Should Shanna West get more years than Bernice Bowen did? |
It's more important to warn folks not to lie to the law than to warn them not to drive passed out |
.Bernice's friend took out 3 cops--Shanna just personally took out a plain lady |
Shanna's boyfriend who stayed home that day should get the time--- he knew she was doped and let her get behind a wheel. It's the fault of whoever wasn't there. |
HINT: Only Shanna did something that could have killed a person. |
I HATE DUIS -WHY- |
