My family
Thursday, October 21, 2010
Me Verse Lupus: The heart of the 23 year relationship
Me Verse Lupus: The heart of the 23 year relationship: "A second posting for the day. My mood is a little better so here I am. My HS friend called me, my brother-in-law called me. I was scared a..."
The heart of the 23 year relationship
A second posting for the day. My mood is a little better so here I am. My HS friend called me, my brother-in-law called me. I was scared at first when he called, but he wanted my opinion. Boy did that make me feel good. I got a comment from a luppie friend on FB telling me that I'm an inspiration. My brother-in-laws' niece, who is also my niece by their marriage, shared some music with me on facebook and told me I was sunshine in others lives and her nephew's woman has lupus and she would like me to her, she thinks I could help her. My son called and he sounded disappointed that I wasn't coming, but he seemed to understand. He said they will try to set up a visit for us here in the City. I got my Writer's Digest magazine today and Greys' Anatomy is on tonight. What simple pleasures to make me feel better. I wish I made arrangements to go to the the Lupus tour tonight. Many of my twitter friends would be there, I hope they will be next week too.
I'll tell some more of my life story. Far Rockaway was a nice place to live for me. I was in the project that wasn't dangerous. The one across the street they use to call Viet Nam. The kids use to blow the doors off with M80's and jump people at night. Not to mention is was full of crack heads and dealers. My side was cool. Yes in the winter is was cold, what they called brick. The wind whipped with specks of sand from the beach. In the summer there was always a cool breeze off the beach, which is where we spent most of our weekends. I was the kool aid mom remember. I always had sandwiches, juice and chips on the beach. The kids in our building would follow us to the beach most of the time. Mr. 23 would join us after his day of 'working', that's what he called his hustle. I would often have a rash somewhere on my body and be extremely tired after. But that what it was always like when I went to the beach. It wasn't unusual and I didn't complain, why should I? I was allergic to the sun, I got a rash. Yea I was tired too but I just thought jumping the waves wore me out. Thinking back now I was litterly drained and the next day I usually stayed in bed. Father usually took good care of me, he would cook, clean and take care of the kids and me when I was tired. Later he would expect sex and get pissed when I was still too tire to comply.
If we didn't go to the beach we went to Prospect Park in Brooklyn, to the movies. Some times we would go to work with father. He would sell his products, fill the car up with his products and we would sit in the car waiting for him to come back with a few dollars, and we, hoping when he returned, it would be time to go home. Once and a while he use to park us by Red Hook projects and we would sit out there for like almost an hour. He was there coping drugs, and getting a hit or two.
He tried real hard to make money and sometimes he did do good. But he was always fighting that crack. I couldn't understand how it had him so controlled. Nothing I said would penetrate. I told him he wasn't god, that he may as well eat pork cause that crack was doing more damage. He was always a small man, after that crack he was smaller then a skeleton. He would come home early in the morning and want to have sex. I didn't want him to touch me. We use to fight, one night he had me pinned to the floor and I picked him up with my legs and threw him across the room. Back then I was like 150. If I came home from work 15 minutes late he would take me in the bathroom and check my panties to see if I had sperm in them. Questioning me why I was late, where was I. It was the crack speaking.
Once I came home I was going up stairs, I never took the elevator I lived on the first floor, as I was walking up this crackhead from the 3rd floor was walking down. She once offered to suck father off for a quarter. When I walked in, father was dancing in the living room, the music blasting, George Michael, Wham was probably playing, the house was clean perfectly. I had to go to the bathroom and sat on the toilet. I could smell the faint smell of crack, when I looked down in the garbage there was a pipe, still warm He told me it belonged to the woman from the 3rd floor. He let her come in to use the bathroom. He thought I was so stupid, why would she use our bathroom when she just lived two floors up. Why would she smoke her crack in my apartment. Come on.
I was isolated then also, I had a car and could go anytime I wanted to but I had the kids. I didn't know fully leave them alone. I took a second job, father was suppose to be there to watch the kids at night. There were many nights I came home and they were alone. There were many nights that they went to bed hungry because he didn't come home with money. Because I stupidly gave him my money to double. I use to steal from the petty cash at work, since I was in charge of it. Or cash an outstanding check. The kids would miss days from school because I was too tired to get them ready in the morning. No matter how tired I was, or how much my hands ached I went to both jobs, trying to get my head above water while he smoked all my efforts away.
Once there was a bad snow storm, I was on-call for my job. I couldn't get coverage for the clients, some where bed bound and couldn't get out the bed to fix themselves something to eat, wash or go to the bathroom. The beeper was ringing non-stop. My nerves were shot. That Monday I was broken out all over my body from my scalp to the bottom of my feet, even the palms of my hands. The doctors couldn't find anything wrong and said it was my nerves, stress from the job. A few weeks later I got a virus and they gave me antibiotics that made me sick. I felt the drug crawling through my skin. I broke out again all over the same way. I didn't know what the drug was, so some years later it will happen again.
Fathers' friend the Man moved in with us. He was a hustler also and Father kept talking about how much money he was making and he would help us out. He gave me a few dollars, brought me a pack a cigarettes here and there and he would bring the kids bags of candy. But he was my brother, known him as long as I've known father. So he was welcome in our home. The same as his brother.
Father and I were sex freaks and planned a threesome with his brother. But it didn't happen the night we tried because they too high. The next night father wasn't having it. The brothers were close. Brother was always with us to bring the new year in. The three of us would sit up getting high, talking and laughing. I could always count on brother to take my side in any dispute father and I had. The nights we spent parting use to end up with the two of them arguing. It would get to the point where Brother would say give me all my stuff I gave you. Loyal to Mr. 23 I would gather brothers' books and the mirror and what ever else there was that he gave to us or left at our place. Then they would go out side to physically fight each other. Then come back bosom buddies. They probably would go out to get high.
After while, brother hadn't been around much. Father kept telling me his brother was sick and he was dying, but wouldn't tell me what was wrong. One Thanksgiving Brother was in his mothers' house, up in the bedroom in the dark, father told me to go up and see him, Brother told me he had aids. I asked him, so you're just going to lay up in this dark room and die. He got dress and came and stayed with us. I was braggin how he stopped getting high while he was sick and his wife took such good care of him. Father and the man laughed at me. They said Brother and his wife were getting high up to the day Brother went into the hospital. Brother didn't know who we were in the hospital he was coming in and out of it. Father ran to the mens' room and I could hear him crying. He came out and we hugged while he shed the rest of his tears.
Father lost his brother, grandfather, aunts, uncles and many friends while were together. I lost my brother, mother, grandmother, aunts, uncles and friends also. We supported each other and cried with each other over lost family. This is the sad part of a long time relationship ending. The memories that we shared privately are only remember alone now.
I'll tell some more of my life story. Far Rockaway was a nice place to live for me. I was in the project that wasn't dangerous. The one across the street they use to call Viet Nam. The kids use to blow the doors off with M80's and jump people at night. Not to mention is was full of crack heads and dealers. My side was cool. Yes in the winter is was cold, what they called brick. The wind whipped with specks of sand from the beach. In the summer there was always a cool breeze off the beach, which is where we spent most of our weekends. I was the kool aid mom remember. I always had sandwiches, juice and chips on the beach. The kids in our building would follow us to the beach most of the time. Mr. 23 would join us after his day of 'working', that's what he called his hustle. I would often have a rash somewhere on my body and be extremely tired after. But that what it was always like when I went to the beach. It wasn't unusual and I didn't complain, why should I? I was allergic to the sun, I got a rash. Yea I was tired too but I just thought jumping the waves wore me out. Thinking back now I was litterly drained and the next day I usually stayed in bed. Father usually took good care of me, he would cook, clean and take care of the kids and me when I was tired. Later he would expect sex and get pissed when I was still too tire to comply.
If we didn't go to the beach we went to Prospect Park in Brooklyn, to the movies. Some times we would go to work with father. He would sell his products, fill the car up with his products and we would sit in the car waiting for him to come back with a few dollars, and we, hoping when he returned, it would be time to go home. Once and a while he use to park us by Red Hook projects and we would sit out there for like almost an hour. He was there coping drugs, and getting a hit or two.
He tried real hard to make money and sometimes he did do good. But he was always fighting that crack. I couldn't understand how it had him so controlled. Nothing I said would penetrate. I told him he wasn't god, that he may as well eat pork cause that crack was doing more damage. He was always a small man, after that crack he was smaller then a skeleton. He would come home early in the morning and want to have sex. I didn't want him to touch me. We use to fight, one night he had me pinned to the floor and I picked him up with my legs and threw him across the room. Back then I was like 150. If I came home from work 15 minutes late he would take me in the bathroom and check my panties to see if I had sperm in them. Questioning me why I was late, where was I. It was the crack speaking.
Once I came home I was going up stairs, I never took the elevator I lived on the first floor, as I was walking up this crackhead from the 3rd floor was walking down. She once offered to suck father off for a quarter. When I walked in, father was dancing in the living room, the music blasting, George Michael, Wham was probably playing, the house was clean perfectly. I had to go to the bathroom and sat on the toilet. I could smell the faint smell of crack, when I looked down in the garbage there was a pipe, still warm He told me it belonged to the woman from the 3rd floor. He let her come in to use the bathroom. He thought I was so stupid, why would she use our bathroom when she just lived two floors up. Why would she smoke her crack in my apartment. Come on.
I was isolated then also, I had a car and could go anytime I wanted to but I had the kids. I didn't know fully leave them alone. I took a second job, father was suppose to be there to watch the kids at night. There were many nights I came home and they were alone. There were many nights that they went to bed hungry because he didn't come home with money. Because I stupidly gave him my money to double. I use to steal from the petty cash at work, since I was in charge of it. Or cash an outstanding check. The kids would miss days from school because I was too tired to get them ready in the morning. No matter how tired I was, or how much my hands ached I went to both jobs, trying to get my head above water while he smoked all my efforts away.
Once there was a bad snow storm, I was on-call for my job. I couldn't get coverage for the clients, some where bed bound and couldn't get out the bed to fix themselves something to eat, wash or go to the bathroom. The beeper was ringing non-stop. My nerves were shot. That Monday I was broken out all over my body from my scalp to the bottom of my feet, even the palms of my hands. The doctors couldn't find anything wrong and said it was my nerves, stress from the job. A few weeks later I got a virus and they gave me antibiotics that made me sick. I felt the drug crawling through my skin. I broke out again all over the same way. I didn't know what the drug was, so some years later it will happen again.
Fathers' friend the Man moved in with us. He was a hustler also and Father kept talking about how much money he was making and he would help us out. He gave me a few dollars, brought me a pack a cigarettes here and there and he would bring the kids bags of candy. But he was my brother, known him as long as I've known father. So he was welcome in our home. The same as his brother.
Father and I were sex freaks and planned a threesome with his brother. But it didn't happen the night we tried because they too high. The next night father wasn't having it. The brothers were close. Brother was always with us to bring the new year in. The three of us would sit up getting high, talking and laughing. I could always count on brother to take my side in any dispute father and I had. The nights we spent parting use to end up with the two of them arguing. It would get to the point where Brother would say give me all my stuff I gave you. Loyal to Mr. 23 I would gather brothers' books and the mirror and what ever else there was that he gave to us or left at our place. Then they would go out side to physically fight each other. Then come back bosom buddies. They probably would go out to get high.
After while, brother hadn't been around much. Father kept telling me his brother was sick and he was dying, but wouldn't tell me what was wrong. One Thanksgiving Brother was in his mothers' house, up in the bedroom in the dark, father told me to go up and see him, Brother told me he had aids. I asked him, so you're just going to lay up in this dark room and die. He got dress and came and stayed with us. I was braggin how he stopped getting high while he was sick and his wife took such good care of him. Father and the man laughed at me. They said Brother and his wife were getting high up to the day Brother went into the hospital. Brother didn't know who we were in the hospital he was coming in and out of it. Father ran to the mens' room and I could hear him crying. He came out and we hugged while he shed the rest of his tears.
Father lost his brother, grandfather, aunts, uncles and many friends while were together. I lost my brother, mother, grandmother, aunts, uncles and friends also. We supported each other and cried with each other over lost family. This is the sad part of a long time relationship ending. The memories that we shared privately are only remember alone now.
Me Verse Lupus: Today is an Ouch day!
Me Verse Lupus: Today is an Ouch day!: "I was sleeping by 10pm. I didn't have enough energy to go up stairs, and then fix something to eat. So I ate candy and chips, oh I did hav..."
Today is an Ouch day!
I was sleeping by 10pm. I didn't have enough energy to go up stairs, and then fix something to eat. So I ate candy and chips, oh I did have a slice of cheese. My mate would of said I was lazy. I have to remember to bring the frozen grapes down. I knew I would be hungry so I took 1 mg of Lorazapam, a Clairtain and 2 extra strength Tylenol and it made me tired. I woke up once during the middle of the night to pee. I slept with my feet out the covers holding the quilt so I wouldn't knock it on the floor. My feet were cold, I hate wearing sock to bed, my toes like to have wiggling room, but I guess I'll need to, if I can't put my feet under the covers. I woke up at almost 8 am this morning. I slept good, in fact I could of slept some more, but no I'll stay out of bed. I was suppose to go for a mamo today but they called and canceled. I would of gone to the SLE Lupus Hospital tour tonight, but when the clinic called it was too late to make arrangements with Access-A-Ride.
I'm home alone for a minute, my mate and her mom went to Pathmark. Next Saturday they are having a dinner for their family coming from Florida. My children were invited. I hope they come but I don't think they will. My oldest daughter said she will see if she has the money to get here. I know what she means, enough to take a taxi back home. My youngest daughter doesn't know if she will have to work or not. So we'll see. Right now I don't feel like being bothered with anyone, I just want to sleep, read, watch TV. Eating would be nice but I am tired of chicken, broiled, baked and fried. some beef stew would be good, or some stew chicken made like my grand mother use to make would be nice. She use to soft fry the chicken and put it in a pot of gravy and let it simmer for an hour or so. Then eat it over white rice. Hummmmm! I don't like cooking when my mate is around. She hoovers and it drives me crazy. She treats me like I don't know what I'm doing.
I'm really in a I don't give a damn kind of mood. I'm locked in my shell alone again, but I'm happy to be alone. it's one of those days that just hurts Here's a poem I wrote about it hurting once before.
I'm home alone for a minute, my mate and her mom went to Pathmark. Next Saturday they are having a dinner for their family coming from Florida. My children were invited. I hope they come but I don't think they will. My oldest daughter said she will see if she has the money to get here. I know what she means, enough to take a taxi back home. My youngest daughter doesn't know if she will have to work or not. So we'll see. Right now I don't feel like being bothered with anyone, I just want to sleep, read, watch TV. Eating would be nice but I am tired of chicken, broiled, baked and fried. some beef stew would be good, or some stew chicken made like my grand mother use to make would be nice. She use to soft fry the chicken and put it in a pot of gravy and let it simmer for an hour or so. Then eat it over white rice. Hummmmm! I don't like cooking when my mate is around. She hoovers and it drives me crazy. She treats me like I don't know what I'm doing.
I'm really in a I don't give a damn kind of mood. I'm locked in my shell alone again, but I'm happy to be alone. it's one of those days that just hurts Here's a poem I wrote about it hurting once before.
OUCH!!!
Lost inside a shell,
sometimes called hell.
Gorging on a diet of bullshit,
now I’m torn and sick.
Empty praises, false adornment,
tricks of torment.
Right from the start,
my blessings, a bruised heart.
Gifted with endless pain,
driven madly insane.
Hiding inside a shell,
sometimes, called hell.
Fueled by greed, affection I need.
Constantly, please.
I gave the best of my life,
he took another wife.
To her he did wed,
me he took to bed.
I don’t belong here, there or anywhere.
Disappearing inside a shell,
sometimes called hell.
I believed in her affection,
thinking, my heart would have protection.
Like a man it’s the same,
full of 'illussional' game.
When she gets a call from Bacardi Le’mon,
it’s me left alone.
She lives her life and I live mine.
never shall the two intertwine.
Consumed inside a shell,
sometimes called hell.
Loneliness won’t you leave,
I want to breathe.
Ignorance is bliss,
spawn three from thy pussy lips.
The children are grown,
and want to be left alone.
Stroke my delicate ego,
like a long ear beagle.
OUCH!!!
I got a boo boo.
Oh! Boo who who?
Crack that shell,
sometimes called hell.
Wednesday, October 20, 2010
Me Verse Lupus: I'm being selfish
Me Verse Lupus: I'm being selfish: "I not going to let myself drown anymore. I've been swimming in this deep ocean of despair for months maybe even years. I've been blaming i..."
I'm being selfish
I not going to let myself drown anymore. I've been swimming in this deep ocean of despair for months maybe even years. I've been blaming it on lupus, my lungs and everyone else.
It was me who jumped in this murky water and refused to wear a life jacket or to climb into the rescue boat that was offered. I had enough of this bitter salty sea, that runs deep and fierce with my tears.
I caught a nasty virus called unhappiness, it spread like a plague. Infecting healthy untroubled souls with a fever of misery. There were illusinonal cures, spirits in glasses, prescriptions promising to heal the sadness. Even being folded under the cover and sleeping wouldn't restore the damage that ugly, nasty virus contaminated my enviorment with.
I found a cure though and it's just a simple, "Fuck you and the pale horse you rode in on." In order to live you must have a life to live and I'm going to live. Day after day I am berated with pick that up, move that, don't you know that goes there even when I'm sleeping, don't let the covers fall on the floor. I am so tense and nervous I don't know if I should sit, stand or walk. What was acceptable yesterday is no longer acceptable today. I'm called lazy because my fatigue must be in my head, because I can sit at the computer.
Many years ago my brother called me a fuck up and it stays with me to this day. As I live to this day the words still haunt me. But no more! I'm not going to be stressed. No more! I said! That's how I feel right now but like Mr. 23 years use to tell me, 'feelings come and go.' the most honest thing he's ever said. Cause tomorrow I my be sick with this nasty poison.
So yesterday I went to the pulmonary rehab. Meet the staff including the doctors who examined me to see if I was a candidate for their program. After the examination the doctor declared me healthy to participate in their gym. I go back next week for a stress test and I guess then I'll start exercising. They say I will learn to breath better and have more energy. They expect me to lose 20 pounds in a year. FUCK THAT! I gained a 100 pounds in two years. If we go by years I expect to lose 50 pounds a year. If I could get off the steroids for a month or two I could lose that more rapidly.
They had me walk up and down this hall for 6 minutes. I did it very well, I believe, I only stopped once for rest. My oxygen level dropped down to 85. The nurse said I walked 8 meters. I know my legs were hurting and I'm still tired today.
After I finished at the gym, Access-A-Ride took me over to see the cardiologist. He said that my echo looked good. There was no indication of my right artery being in large, no CHF and he thinks it's unlikely that I have Pulmonary Hypertention. He's still wants me to do a full heart catheraztion because he believes there's a lot of fluid in my lungs and heart. He says my S.O.B is probally due to my weight. So my insperation is to lose weight and drop this other person I've been toting around. Then I should feel better. I'll still have lupus, which at the moment is only causing minum discomfort. I still have the headaches in the morning, but Monday I go for an MRI and MRA, which will probally show nothing. The swelling and achiness in my hands and knees have been a part of my life forever. So if I lose the weight, the COPD and IDL is minumum, then I may be able to come off the ozygen and have a life again. With the weight loss my blood pressure should be regulated so I'll need less meds and maybe I can go in remission and stop taking the cellcept, plaquline and steroids. Then I can start living agian. My lips to Gods' ears. Sounds like I'll have another chance at life. Maybe I'll be able to go out and shake my stiff ass on a dance floor and maybe have some hot, freaky sex again. Don't pinch me if I'm dreaming just leave me alone.
The highlight of my day out yesterday was while waiting for the Access-A-Ride home I had a turkey burger with cheddar cheese, fired onions, lettus, tomatoes on a toasted bun. I had french fries and a nice kosher pickle. Shhh! I know I just spoke about losing weight, but a least it wasn't beef. I did drink a coke soda. It has been a long time since I had a turkey burger, let me tell you it was hevenly, I savored every bite. I think I even had and orgasm, I think cause I forgot what they felt like. I'm planning on having another one when I go back to see the cardio doc again. The turksy burer that is. Let me ask you, the onions I asked for were fried but they call them sautated. Aren't sautated onions just heated enough to soft and fried onions are dark brown and crunchy. Why? Why do waitress and short order cooks want to call them sautated, does it make them sound more classy. I like them both ways but I prefer fried.
They are having family day at the rehab my son is in this. He wants me to come. First of all it cost $54 round trip, not too bad if I had the extra money to go. Second it's a two hour ride to the place and two hours back home, on a bus. You know the ones with a little stinky closet with chemical smelling tolites. Am I being selfish to not want make that trip? I support him trying to get clean and sobber. But he's a grown man, 32 years old. He spent most of his life in prision. He came home and got himself in a program with a studio apartment, things were going slow but they were working out for him. He was the one who choose to drink alchol and failed the piss test. He was fortuanate that his parol officer didn't violate him and lock him back up. I told him I didn't think I could make it and he beg, please try. I told him my money was short, yet he still askes me to send him some money. Is he selfish, does all he care about is his needs and wants? He's 32 I was 33 when my mother died. I no longer had her to pick me up when I fell. I had to lick my own wounds and heal myself. Why can't he do that? Did I cripple him?
So I call up to speak with a councelor. I tell the person on the phone all that I just described and this man tells me. Your son really needs you to come and see him. It would help him. I should really try. He fed me this heavy guilt trip like, it shouldn't be a problem taking a 2 hour bus trip with oxygen and a closet bathroom to pee in every 20 minutes or so, even if I don't drink anything. And then turn around and do it to get back home. Comes to find out the person I was talking to was a patient. So I wrote my son a letter and told him how difficult it would be for me to come and that I'm sorry, love him but I can't make it up there to see him. Am I being selfish?
It was me who jumped in this murky water and refused to wear a life jacket or to climb into the rescue boat that was offered. I had enough of this bitter salty sea, that runs deep and fierce with my tears.
I caught a nasty virus called unhappiness, it spread like a plague. Infecting healthy untroubled souls with a fever of misery. There were illusinonal cures, spirits in glasses, prescriptions promising to heal the sadness. Even being folded under the cover and sleeping wouldn't restore the damage that ugly, nasty virus contaminated my enviorment with.
I found a cure though and it's just a simple, "Fuck you and the pale horse you rode in on." In order to live you must have a life to live and I'm going to live. Day after day I am berated with pick that up, move that, don't you know that goes there even when I'm sleeping, don't let the covers fall on the floor. I am so tense and nervous I don't know if I should sit, stand or walk. What was acceptable yesterday is no longer acceptable today. I'm called lazy because my fatigue must be in my head, because I can sit at the computer.
Many years ago my brother called me a fuck up and it stays with me to this day. As I live to this day the words still haunt me. But no more! I'm not going to be stressed. No more! I said! That's how I feel right now but like Mr. 23 years use to tell me, 'feelings come and go.' the most honest thing he's ever said. Cause tomorrow I my be sick with this nasty poison.
So yesterday I went to the pulmonary rehab. Meet the staff including the doctors who examined me to see if I was a candidate for their program. After the examination the doctor declared me healthy to participate in their gym. I go back next week for a stress test and I guess then I'll start exercising. They say I will learn to breath better and have more energy. They expect me to lose 20 pounds in a year. FUCK THAT! I gained a 100 pounds in two years. If we go by years I expect to lose 50 pounds a year. If I could get off the steroids for a month or two I could lose that more rapidly.
They had me walk up and down this hall for 6 minutes. I did it very well, I believe, I only stopped once for rest. My oxygen level dropped down to 85. The nurse said I walked 8 meters. I know my legs were hurting and I'm still tired today.
After I finished at the gym, Access-A-Ride took me over to see the cardiologist. He said that my echo looked good. There was no indication of my right artery being in large, no CHF and he thinks it's unlikely that I have Pulmonary Hypertention. He's still wants me to do a full heart catheraztion because he believes there's a lot of fluid in my lungs and heart. He says my S.O.B is probally due to my weight. So my insperation is to lose weight and drop this other person I've been toting around. Then I should feel better. I'll still have lupus, which at the moment is only causing minum discomfort. I still have the headaches in the morning, but Monday I go for an MRI and MRA, which will probally show nothing. The swelling and achiness in my hands and knees have been a part of my life forever. So if I lose the weight, the COPD and IDL is minumum, then I may be able to come off the ozygen and have a life again. With the weight loss my blood pressure should be regulated so I'll need less meds and maybe I can go in remission and stop taking the cellcept, plaquline and steroids. Then I can start living agian. My lips to Gods' ears. Sounds like I'll have another chance at life. Maybe I'll be able to go out and shake my stiff ass on a dance floor and maybe have some hot, freaky sex again. Don't pinch me if I'm dreaming just leave me alone.
The highlight of my day out yesterday was while waiting for the Access-A-Ride home I had a turkey burger with cheddar cheese, fired onions, lettus, tomatoes on a toasted bun. I had french fries and a nice kosher pickle. Shhh! I know I just spoke about losing weight, but a least it wasn't beef. I did drink a coke soda. It has been a long time since I had a turkey burger, let me tell you it was hevenly, I savored every bite. I think I even had and orgasm, I think cause I forgot what they felt like. I'm planning on having another one when I go back to see the cardio doc again. The turksy burer that is. Let me ask you, the onions I asked for were fried but they call them sautated. Aren't sautated onions just heated enough to soft and fried onions are dark brown and crunchy. Why? Why do waitress and short order cooks want to call them sautated, does it make them sound more classy. I like them both ways but I prefer fried.
They are having family day at the rehab my son is in this. He wants me to come. First of all it cost $54 round trip, not too bad if I had the extra money to go. Second it's a two hour ride to the place and two hours back home, on a bus. You know the ones with a little stinky closet with chemical smelling tolites. Am I being selfish to not want make that trip? I support him trying to get clean and sobber. But he's a grown man, 32 years old. He spent most of his life in prision. He came home and got himself in a program with a studio apartment, things were going slow but they were working out for him. He was the one who choose to drink alchol and failed the piss test. He was fortuanate that his parol officer didn't violate him and lock him back up. I told him I didn't think I could make it and he beg, please try. I told him my money was short, yet he still askes me to send him some money. Is he selfish, does all he care about is his needs and wants? He's 32 I was 33 when my mother died. I no longer had her to pick me up when I fell. I had to lick my own wounds and heal myself. Why can't he do that? Did I cripple him?
So I call up to speak with a councelor. I tell the person on the phone all that I just described and this man tells me. Your son really needs you to come and see him. It would help him. I should really try. He fed me this heavy guilt trip like, it shouldn't be a problem taking a 2 hour bus trip with oxygen and a closet bathroom to pee in every 20 minutes or so, even if I don't drink anything. And then turn around and do it to get back home. Comes to find out the person I was talking to was a patient. So I wrote my son a letter and told him how difficult it would be for me to come and that I'm sorry, love him but I can't make it up there to see him. Am I being selfish?
Sunday, October 17, 2010
Me Verse Lupus: Just an update
Me Verse Lupus: Just an update: "I crawled out of bed after 8:30 am this morning. Not that I had an exceptional good night sleep. I've been having a head ache every morning..."
Just an update
I crawled out of bed after 8:30 am this morning. Not that I had an exceptional good night sleep. I've been having a head ache every morning after not sleeping well for a couple of weeks now. I thought it was my allergies, maybe so. I took the Nasonex for a few nights and the Claritin. When I started to feel better I stopped. I took them again last night, about 1:30 am I was up and couldn't go back to sleep. I tossed and turned. My mate woke up and asked me what was wrong, she asked if I was in pain. I told her yea, she asked where. I told her the better question to ask was, where it didn't hurt, that was in my stomach. Every joint was humming. So I tool a Lorazapam and after sleep came and it came deep. I'm up now, still a bit achy but I can handle it.
I miss writing my blog. Been tired but no matter how dedicate I am to writing about me I need to rest. I went to the the new Rheumatologist, I like him too. His memory is not as great as the Pulmonary and Cardiologist but he's compassionate. He's also good looking and young. He put me back on Plaquline and he is sending me for an MRI and MRA of the brain to see if he can find out why I'm dizzy and get the numbing in my mouth. I had an MRI before but not an MRA.
Speaking of which, I called my former clinic and asked about the medical records I requested. There was no answer, I left messages. So I called patience advocacy. I got a message about 5:30pm, after business hours, I didn't hear my cell phone. I called the next day, the woman was nasty. It's becoming a norm for these people to be nasty to me when I call and question about my business. She says she didn't get any request. I was on my way out the door so I told her I would fax a copy. Which I did. I typed a letter with the records I wanted and they attached it to their request copy. The woman says they don't do it that way it needs to be written out on their official request form. I asked her why didn't someone call me and tell me this. I made this request over a month and a half ago. I need these records for my new doctors, I told her this is for my health. She says she'll pass the request as is on to the imaging service. Unbelievable.
Okay back to the Rheumy, he works with two doctors that are specialist in Lupus research. They interview his patients and consult with him regarding their care. He says they are top doctors in Lupus studies. God is so good to me. I'll meet with one of them November 4th.
This doctor is far from my home. I had to take my Access-A-Ride to Nassau to transfer to another bus company (Able Ride) and do the same to return. The Able bus on the return was right on time. Only thing was there was a lot of traffic due to screwed up traffic lights, train crossings and just stupid traffic because for some reason people just don't know how to drive in heavy rain. But it was okay I had 45 minutes to wait for Access-A-Ride. I went and got a sandwich and a coffee, How stupid of me getting coffee. I sat under the awning eating and drinking coffee watching the people, rain and crazy valet parking drivers. Time pasted quickly. My bus was late and the coffee kicked in I didn't want to leave and miss my ride. I called and from where they said my driver was I could make it to the bathroom and back. The bus was an hour and 15 minutes late. He had to pick up another passenger after me and I need to go to the pharmacy and put my prescriptions in. The major problem was that it was Greys' Anatomy night. I was dropped off at the pharmacy it was 7:50 pm and it was going to take a half hour for my medication to be ready. I called my cab friend and asked him to pick me up in the half hour, he said he had a customer and said he would try and I said I would wait. It took 45 minutes for my drugs to be ready and my cab said he was on his way. I got home at 7:46 pm. I showered, ate the rest of my sandwich and was laying in front of the TV just as Greys' was beginning.
My daughter called about my granddaughters' birthday on Saturday. I told her I wasn't coming because I was hurt that my youngest grandson wasn't allowed to come because their parents were feuding. We are all we have and I like it when we get together especially for birthdays. I did end up going to see my granddaughter and even though it was just me her brother and mother. She was in the best mood ever. She was happy and that made me feel good. My grandson was a mess. His mother gave him a new game for his DSIThis daughter refuses to accept that I'm ill. She says she knows what lupus is and I'm going to be fine. She ignores that I use oxygen and that I have lung involvement. I asked her not to smoke, even though it's all the way in the back of the apartment, the smoke effects me, my breathing is getting harder. I don't know how to deal with her. She is doing what she needs to do, she just got a city job. Which is great, and she will be able to take the classes she needs to get her degree. I'm proud of her but she is so self absorbed I don't know what to say to her.
I'll be home today and tomorrow. Tuesday I'm suppose to go to the Oxygym, it a rehab gym with nurses to assist me in exercises that will help me lose weight. I was going to cancel because I really can't afford $20 co-pay three times a week. The nurse called and she's going to see if she can work something out for me. We'll see. I also go and see the Cardiologist and hopefully get set up for the heart cauterization. Then that's it for the week. I was going to go the the next SLE Lupus Hospital Tour but it's in Staten Island, the subject is the Kidneys I attended this subject matter twice already and it's on Thursday, Greys' Anatomy night. I need the rest. There are 2 more I will surely make the one on the heart.
I will write the rest bout my life soon. Thanks for reading and I hope this update wasn't too boring.
I miss writing my blog. Been tired but no matter how dedicate I am to writing about me I need to rest. I went to the the new Rheumatologist, I like him too. His memory is not as great as the Pulmonary and Cardiologist but he's compassionate. He's also good looking and young. He put me back on Plaquline and he is sending me for an MRI and MRA of the brain to see if he can find out why I'm dizzy and get the numbing in my mouth. I had an MRI before but not an MRA.
Speaking of which, I called my former clinic and asked about the medical records I requested. There was no answer, I left messages. So I called patience advocacy. I got a message about 5:30pm, after business hours, I didn't hear my cell phone. I called the next day, the woman was nasty. It's becoming a norm for these people to be nasty to me when I call and question about my business. She says she didn't get any request. I was on my way out the door so I told her I would fax a copy. Which I did. I typed a letter with the records I wanted and they attached it to their request copy. The woman says they don't do it that way it needs to be written out on their official request form. I asked her why didn't someone call me and tell me this. I made this request over a month and a half ago. I need these records for my new doctors, I told her this is for my health. She says she'll pass the request as is on to the imaging service. Unbelievable.
Okay back to the Rheumy, he works with two doctors that are specialist in Lupus research. They interview his patients and consult with him regarding their care. He says they are top doctors in Lupus studies. God is so good to me. I'll meet with one of them November 4th.
This doctor is far from my home. I had to take my Access-A-Ride to Nassau to transfer to another bus company (Able Ride) and do the same to return. The Able bus on the return was right on time. Only thing was there was a lot of traffic due to screwed up traffic lights, train crossings and just stupid traffic because for some reason people just don't know how to drive in heavy rain. But it was okay I had 45 minutes to wait for Access-A-Ride. I went and got a sandwich and a coffee, How stupid of me getting coffee. I sat under the awning eating and drinking coffee watching the people, rain and crazy valet parking drivers. Time pasted quickly. My bus was late and the coffee kicked in I didn't want to leave and miss my ride. I called and from where they said my driver was I could make it to the bathroom and back. The bus was an hour and 15 minutes late. He had to pick up another passenger after me and I need to go to the pharmacy and put my prescriptions in. The major problem was that it was Greys' Anatomy night. I was dropped off at the pharmacy it was 7:50 pm and it was going to take a half hour for my medication to be ready. I called my cab friend and asked him to pick me up in the half hour, he said he had a customer and said he would try and I said I would wait. It took 45 minutes for my drugs to be ready and my cab said he was on his way. I got home at 7:46 pm. I showered, ate the rest of my sandwich and was laying in front of the TV just as Greys' was beginning.
My daughter called about my granddaughters' birthday on Saturday. I told her I wasn't coming because I was hurt that my youngest grandson wasn't allowed to come because their parents were feuding. We are all we have and I like it when we get together especially for birthdays. I did end up going to see my granddaughter and even though it was just me her brother and mother. She was in the best mood ever. She was happy and that made me feel good. My grandson was a mess. His mother gave him a new game for his DSIThis daughter refuses to accept that I'm ill. She says she knows what lupus is and I'm going to be fine. She ignores that I use oxygen and that I have lung involvement. I asked her not to smoke, even though it's all the way in the back of the apartment, the smoke effects me, my breathing is getting harder. I don't know how to deal with her. She is doing what she needs to do, she just got a city job. Which is great, and she will be able to take the classes she needs to get her degree. I'm proud of her but she is so self absorbed I don't know what to say to her.
I'll be home today and tomorrow. Tuesday I'm suppose to go to the Oxygym, it a rehab gym with nurses to assist me in exercises that will help me lose weight. I was going to cancel because I really can't afford $20 co-pay three times a week. The nurse called and she's going to see if she can work something out for me. We'll see. I also go and see the Cardiologist and hopefully get set up for the heart cauterization. Then that's it for the week. I was going to go the the next SLE Lupus Hospital Tour but it's in Staten Island, the subject is the Kidneys I attended this subject matter twice already and it's on Thursday, Greys' Anatomy night. I need the rest. There are 2 more I will surely make the one on the heart.
I will write the rest bout my life soon. Thanks for reading and I hope this update wasn't too boring.
Thursday, October 14, 2010
Me Verse Lupus: Wise Fools we are, Well I am
Me Verse Lupus: Wise Fools we are, Well I am: "After that hails storm we had on Monday night, I'm sad to announce that my pet spider, Charles has left home. I looked for him for two days..."
Wise Fools we are, Well I am
After that hails storm we had on Monday night, I'm sad to announce that my pet spider, Charles has left home. I looked for him for two days and he's gone.
Yesterday I felt like a real person for a change. I woke up at 4 am and was out the house by 5 am. I sat in the cold waiting for my connecting bus in Long Island for an hour. I loved it, I very rarely get cold. I had my echo, they didn't have the definity drug, so I may have to go back. I see the cardio doctor next Tuesday. It's getting closer to me having the heart cauterization. I stopped and got the odimoninter from the pulmonary doctors office. The first night I slept with it, the machine didn't get a reading. I slept with it last night, I woke up this morning and the red light wasn't on, so I don't know, I may have to do it again.
The seminar last night was the best of the SLE Lupus NYC Hospital Tours I've gone to. No problem with location. There was no excessive walking to the auditorium. Socializing was nice, I sat with women who attend frequently, I guess you could call us Lupus groupies. The auditorium was nice, it had a nice old fashion wooden stage, with a huge screen. The speakers stood at a podium, eye level to us on the floor. The tables had white table clothes on them. The food was nicely spread. The plates were round and black with a scalloped design, the forks were plastic that looked as if they were silver. Very nice, elegant. The meal was sandwiches, that were tasty, a toss salad, and potato salad. That was delicious, I asked the personnel where they got it from and they said they made it in their hospital kitchen. I asked if they fed this to their patients and they said they did. Let me tell you if they feed their patients like that, I'm sure they get well quickly with regrets. I wouldn't mind being there to be feed food that taste so good. They severed delicious bakery cookies. There was a full house, it was almost standing room only. I guess that's because it was in the city so bad, they had to name it twice, New York, New York. The hospital one of the top, Lenox Hill.
I told Kate Anastasia, the Director of Programs about the boo boo I made with FB and the ad for this blog and she said that I may be able to get financial help. That would be great, believe me. I feel that lost. I got my SSD check yesterday and after paying my bills I barely have enough left for care fare back and forth to the doctors and the co-payments. I have no cushion.
Dr. Nancy Beckerman was there again this week, she reviewed the survey she did last year. The guest speaker Dr. Robin Dibner was inspiring, promoting hope and confidence. The material was nothing new but presented in a fresh new way. Lupus attacks each of us differently and in so many ways, what Dr. Dibner did last night was make us feel less alone. Dr. Dibner is one of the top Rhuemotologist in NY and she is the author of "Lupus Handbook for Women". She is very impressive.
Last week one of the women that came had the same issues I had with Access-A-Ride, she was a complainer, and we were talking about her just before she came. (God forgive us and me for telling this story.) She showed up late, sat with us. By the time she got there the program was about to start, she had a Access-A-Ride pick up at 7:40pm the program was over at 8pm. My pick up was at 8:01 pm. Last week they ended early so I thought it would this week also. I really wanted to stay but of course I couldn't miss my ride. I left at 8:45 so I could stop in the bathroom, I got out side about 8 minutes to 8, there was a bus down the block. I called AAR. and they told me my bus was out side. I walked down to it and was 5 minutes early like I'm suppose to be. Don't you know this complaining woman was on the bus. OMG! She had the audacity to chastised me, saying I'm suppose to be out there at 7:40pm. The driver told her no I was on time. All the way back to Queens she complained about her attendant, her legs, her cholesterol, her eyes. She said she was going to die young because her sister died young and because she has allergies to latex. She wanted sympathy. I complain in this blog, and if you don't want to hear it, as I tell my grankids when they are on the computer, X out. I try not to complain to people because I know they don't want to hear it and I know it's annoying. Even when someone asks how are you? Do you want to hear, oh my head hurts, my hemorrhoids are swelling and I threw up all over the bathroom floor? No. We just say I'm okay, or so so or give some evasive answer. What does complaining to someone do? Make that person not want to be around you. Hell as you all know I don't want to chase anyone away from me. I'm starving for attention.
I mention this because no matter how gloom our lives my be, there is always someone who's life is worst. There was a woman at the meeting who has Raynard's and she's missing a leg, and her fingers have been amputated at the tips. She didn't complain, she smiled enjoyed her dinner and was pleasant. I'm thankful for the life I have, yes I wish things were different. That I was not sick, that I was financially secure, and my children were happy. My life is what it is, I've had some good days, some bad ones and I know I will have more of both. Sometimes, I wish I would just die, because of the self pity, depression and loneliness. Then there are the days when I believe I will live well into my 80s' possibly 90s' and all is possible with my God. I thank Him and try not to question him. We can't change people, we can't make people see things the way we see them. I guess this is why we live in this world of different personalities and morals. No one is perfect. We can try to achieve perfection, It is a wise person who learns from their mistakes. A fool who continues to makes the same mistakes over and over. In reality we are all sometime wise when we see the mistake for what it is. And we are fools when we continue to make the same mistake over and over because we believe we can make it work for us eventually. So I guess we are all "Wise Fools".
I meet my new Rhuematologist today, boy was this a busy week for me. I pray he's just as nice as the last two doctors I met. Until tomorrow God Bless.
Yesterday I felt like a real person for a change. I woke up at 4 am and was out the house by 5 am. I sat in the cold waiting for my connecting bus in Long Island for an hour. I loved it, I very rarely get cold. I had my echo, they didn't have the definity drug, so I may have to go back. I see the cardio doctor next Tuesday. It's getting closer to me having the heart cauterization. I stopped and got the odimoninter from the pulmonary doctors office. The first night I slept with it, the machine didn't get a reading. I slept with it last night, I woke up this morning and the red light wasn't on, so I don't know, I may have to do it again.
The seminar last night was the best of the SLE Lupus NYC Hospital Tours I've gone to. No problem with location. There was no excessive walking to the auditorium. Socializing was nice, I sat with women who attend frequently, I guess you could call us Lupus groupies. The auditorium was nice, it had a nice old fashion wooden stage, with a huge screen. The speakers stood at a podium, eye level to us on the floor. The tables had white table clothes on them. The food was nicely spread. The plates were round and black with a scalloped design, the forks were plastic that looked as if they were silver. Very nice, elegant. The meal was sandwiches, that were tasty, a toss salad, and potato salad. That was delicious, I asked the personnel where they got it from and they said they made it in their hospital kitchen. I asked if they fed this to their patients and they said they did. Let me tell you if they feed their patients like that, I'm sure they get well quickly with regrets. I wouldn't mind being there to be feed food that taste so good. They severed delicious bakery cookies. There was a full house, it was almost standing room only. I guess that's because it was in the city so bad, they had to name it twice, New York, New York. The hospital one of the top, Lenox Hill.
I told Kate Anastasia, the Director of Programs about the boo boo I made with FB and the ad for this blog and she said that I may be able to get financial help. That would be great, believe me. I feel that lost. I got my SSD check yesterday and after paying my bills I barely have enough left for care fare back and forth to the doctors and the co-payments. I have no cushion.
Dr. Nancy Beckerman was there again this week, she reviewed the survey she did last year. The guest speaker Dr. Robin Dibner was inspiring, promoting hope and confidence. The material was nothing new but presented in a fresh new way. Lupus attacks each of us differently and in so many ways, what Dr. Dibner did last night was make us feel less alone. Dr. Dibner is one of the top Rhuemotologist in NY and she is the author of "Lupus Handbook for Women". She is very impressive.
Last week one of the women that came had the same issues I had with Access-A-Ride, she was a complainer, and we were talking about her just before she came. (God forgive us and me for telling this story.) She showed up late, sat with us. By the time she got there the program was about to start, she had a Access-A-Ride pick up at 7:40pm the program was over at 8pm. My pick up was at 8:01 pm. Last week they ended early so I thought it would this week also. I really wanted to stay but of course I couldn't miss my ride. I left at 8:45 so I could stop in the bathroom, I got out side about 8 minutes to 8, there was a bus down the block. I called AAR. and they told me my bus was out side. I walked down to it and was 5 minutes early like I'm suppose to be. Don't you know this complaining woman was on the bus. OMG! She had the audacity to chastised me, saying I'm suppose to be out there at 7:40pm. The driver told her no I was on time. All the way back to Queens she complained about her attendant, her legs, her cholesterol, her eyes. She said she was going to die young because her sister died young and because she has allergies to latex. She wanted sympathy. I complain in this blog, and if you don't want to hear it, as I tell my grankids when they are on the computer, X out. I try not to complain to people because I know they don't want to hear it and I know it's annoying. Even when someone asks how are you? Do you want to hear, oh my head hurts, my hemorrhoids are swelling and I threw up all over the bathroom floor? No. We just say I'm okay, or so so or give some evasive answer. What does complaining to someone do? Make that person not want to be around you. Hell as you all know I don't want to chase anyone away from me. I'm starving for attention.
I mention this because no matter how gloom our lives my be, there is always someone who's life is worst. There was a woman at the meeting who has Raynard's and she's missing a leg, and her fingers have been amputated at the tips. She didn't complain, she smiled enjoyed her dinner and was pleasant. I'm thankful for the life I have, yes I wish things were different. That I was not sick, that I was financially secure, and my children were happy. My life is what it is, I've had some good days, some bad ones and I know I will have more of both. Sometimes, I wish I would just die, because of the self pity, depression and loneliness. Then there are the days when I believe I will live well into my 80s' possibly 90s' and all is possible with my God. I thank Him and try not to question him. We can't change people, we can't make people see things the way we see them. I guess this is why we live in this world of different personalities and morals. No one is perfect. We can try to achieve perfection, It is a wise person who learns from their mistakes. A fool who continues to makes the same mistakes over and over. In reality we are all sometime wise when we see the mistake for what it is. And we are fools when we continue to make the same mistake over and over because we believe we can make it work for us eventually. So I guess we are all "Wise Fools".
I meet my new Rhuematologist today, boy was this a busy week for me. I pray he's just as nice as the last two doctors I met. Until tomorrow God Bless.
Tuesday, October 12, 2010
Me Verse Lupus: Nice to have a life for a few days
Me Verse Lupus: Nice to have a life for a few days: "Woke up with one hell of a head ache. Oh it hurts. Pressure is 144/89. Do you think not having one of my Pressure pills is causing this? M..."
Nice to have a life for a few days
Woke up with one hell of a head ache. Oh it hurts. Pressure is 144/89. Do you think not having one of my Pressure pills is causing this? My mate paid for them last night. I'll be back on regiment today. I have an hour before I can eat. I have almond milk and Kashi Go Lean so that's breakfast, if I'm not tempted by something fattening and delicious. Friday I plan to get some blueberries, strawberries a pineapple and cottage cheese. I'm going to try and snack on that at night when the cravings come. I like that stuff, I just like chocolate, cake and candy better.
I go for my echo tomorrow. Then I can schedule my cauterization. I was reassured by several folks on my online support group, that it's not that bad and that I'll feel better. I really want to know what it feels like to feel good again. I was told I would feel better after I had my hysterectomy, three years later and I'm still waiting.
Tomorrow evening I'm going to the S.L.E Lupus Fountation 2nd seminar for this year, I called and got the address closest to the auditorium. I hope I don't have to walk any distance. My mate asked why I go to these things. I go to learn about the different subjects, to learn what's new, to socialize with people who know what I'm going through. To fucking get out the house. She goes to her rehearsals three times a week and the nights she doesn't have rehearsals she goes to the bar. Where am I? Socializing on FB, Twitter or writing this blog. Once and a while someone talks back to me. Once in a while I might get a phone call. My sister is having some difficulties right now so I don't get to talk to her too much right now. My friends what few that still talk to me are busy with their lives. I don't have anything to talk about anyway. My children stress me. They have their problems and issues of their own and I can't help them cause I can't even help myself. So I go to these seminars to feel alive for a few couple of hours.
I really enjoyed my grandchildren yesterday. I asked them why they were home from school and they didn't know, so I told them. I hope they don't get in trouble in school. I just told them that Columbus discovered a new world and new people. Then took over the country and put the inhabitants on reservations. I didn't lie, right? We ended up talking about slavery, which opened the door for me to tell them that slaves weren't allowed to learn to read and write and how lucky they were to go to school and learn. I told them they should work real hard in school. I made cards out of loose leaf paper and put words on it and we played the memory game. They could see through the paper, and were cheating. I stopped the game so we could color the back. I was surprised that they knew all the words I used. Then we read about Shaka Zulu. They found it interesting. They ate, watched TV and were pretty good until their grandfather came in. Of course he bitched about the house being a mess. Sorry.
So I'll be busy tomorrow. On Thursday afternoon I meet my new Rhuemotologist. I'll get back to my life story in a few days.
I go for my echo tomorrow. Then I can schedule my cauterization. I was reassured by several folks on my online support group, that it's not that bad and that I'll feel better. I really want to know what it feels like to feel good again. I was told I would feel better after I had my hysterectomy, three years later and I'm still waiting.
Tomorrow evening I'm going to the S.L.E Lupus Fountation 2nd seminar for this year, I called and got the address closest to the auditorium. I hope I don't have to walk any distance. My mate asked why I go to these things. I go to learn about the different subjects, to learn what's new, to socialize with people who know what I'm going through. To fucking get out the house. She goes to her rehearsals three times a week and the nights she doesn't have rehearsals she goes to the bar. Where am I? Socializing on FB, Twitter or writing this blog. Once and a while someone talks back to me. Once in a while I might get a phone call. My sister is having some difficulties right now so I don't get to talk to her too much right now. My friends what few that still talk to me are busy with their lives. I don't have anything to talk about anyway. My children stress me. They have their problems and issues of their own and I can't help them cause I can't even help myself. So I go to these seminars to feel alive for a few couple of hours.
I really enjoyed my grandchildren yesterday. I asked them why they were home from school and they didn't know, so I told them. I hope they don't get in trouble in school. I just told them that Columbus discovered a new world and new people. Then took over the country and put the inhabitants on reservations. I didn't lie, right? We ended up talking about slavery, which opened the door for me to tell them that slaves weren't allowed to learn to read and write and how lucky they were to go to school and learn. I told them they should work real hard in school. I made cards out of loose leaf paper and put words on it and we played the memory game. They could see through the paper, and were cheating. I stopped the game so we could color the back. I was surprised that they knew all the words I used. Then we read about Shaka Zulu. They found it interesting. They ate, watched TV and were pretty good until their grandfather came in. Of course he bitched about the house being a mess. Sorry.
So I'll be busy tomorrow. On Thursday afternoon I meet my new Rhuemotologist. I'll get back to my life story in a few days.
Sunday, October 10, 2010
Me Verse Lupus: Just a F#%* up
Me Verse Lupus: Just a F#%* up: "Feeling down this morning, so what else is new? I took 1.5 mg of Lorazapam. I'm kind of depending on them. I don't have anything to snack ..."
Just a F#%* up
Feeling down this morning, so what else is new? I took 1.5 mg of Lorazapam. I'm kind of depending on them. I don't have anything to snack on at night so I've been taking the drug to help me sleep so I don't think about eating. I just need to get pass the next 3 days and I will have money to do the things I need to do. I owe my mate $44.50 and I sure want to pay her back as soon a possible. My daughter is going to lend me $45 dollars to hold me until Wednesday. I put my prescriptions in the pharmacy but I need $10 to get them out, one is blood pressure pills, I didn't take it yesterday and won't have it until Tuesday, that's 4 days. I don't have enough potassium to last until Thursday when I see the Rheumy, so I'm taking it once a day until then. I won't have my breathing medication Tuesday morning, but that should be okay because the prescription filled at the pharmacy. That damn mistake with FB is hurting me. Access-A-Ride not sending my reimbursement check. Damn if there's a way to fuck up my life, I find it.
This is what my life has always been. I've had large sums of money many times over my life. I worked for a city funded program under the Kochs' administration. I got 5% raises that were retroactive for a year or more. I took my money out of my 401k, I liquidated my life insurance policy. I stole whole paychecks on my off pay week. I worked two full time jobs at different times. My mother left me a large sum of money when she died. I didn't get a lot but I got a few dollars when I sold the family house. Where the fuck is all that money. Burned up in bull shit. I had plenty of time to make my millions. I was an ass hole.
I dreamed of writing a best seller and watching it climb up the NY Times list and then made into a motion picture and I saw myself going up to accept my my little gold man from the academy awards. My novel is good what I have finished of it. I need an editor, I need an agent and I need someone who will think it's worth trying to sell.
Most of all I need discipline, I don't have any, not to save money, not to control my weight. And I don't have the discipline to put the effort in to complete my novel when it's more then half way done. There's aways something. Working on my greeting cards, writing this blog. I spent so much time farming on FB that I could of been finished with all the time I put playing games. When I first got sick I couldn't concentrate, it hasn't changed much but one thing writing this blog has proven to me is that I can still write, that I still have a little talent left, I just need to do it.
When me and father (Mr.23) were in the project. I use to write all the time, poems, short stories. He use to write also when he was there. I brought a word processor, I loved my machine. I'd come home clean, feed the kids, put them to bed and stay up at night writing. The kids weren't suppose to touch it. But my oldest daughter did and got a ink spot on it. She tried to clean it. She put Ajax on the machine, then water to wipe it off. There was no ink spot but it didn't work either. Water damage. Fortunately I was able to get it repaired under warranty. I had tunnel vision, all I could see was my writing was going to make me successful. All the writing books warned against writing for profit. They suggest that you write for yourself. Turns out I finished the novel when I moved back into my mothers' house, that's another story. Lost it when I sold the house and my good friend from high school found it and sent me a copy. Maybe I'll work on it again. After I typed 'the end' on that novel I had enough of it. I gave a lot of time to it and didn't want to touch it any more.
The novel I've currently been working on is good. I like my characters and I think I have a lot of twist and turns in it and I don't think it's predictable. I just need that drive I had when I worked on my first novel. I can blame it on my mate. I can blame it on the lupus and medication. But the bottom line is I don't have any discipline. I don't have the drive I use to though I'm just as hungry.
It's going to be a long week, I will write more as I have time. I guess this is my writing for myself, so it doesn't matter. This is one of the reason I write, it's where I have someone to listen to me. Paper and pen has always been my best friend. If only they could put their arms around me an hug me when I need it so desperately sometimes.
This is what my life has always been. I've had large sums of money many times over my life. I worked for a city funded program under the Kochs' administration. I got 5% raises that were retroactive for a year or more. I took my money out of my 401k, I liquidated my life insurance policy. I stole whole paychecks on my off pay week. I worked two full time jobs at different times. My mother left me a large sum of money when she died. I didn't get a lot but I got a few dollars when I sold the family house. Where the fuck is all that money. Burned up in bull shit. I had plenty of time to make my millions. I was an ass hole.
I dreamed of writing a best seller and watching it climb up the NY Times list and then made into a motion picture and I saw myself going up to accept my my little gold man from the academy awards. My novel is good what I have finished of it. I need an editor, I need an agent and I need someone who will think it's worth trying to sell.
Most of all I need discipline, I don't have any, not to save money, not to control my weight. And I don't have the discipline to put the effort in to complete my novel when it's more then half way done. There's aways something. Working on my greeting cards, writing this blog. I spent so much time farming on FB that I could of been finished with all the time I put playing games. When I first got sick I couldn't concentrate, it hasn't changed much but one thing writing this blog has proven to me is that I can still write, that I still have a little talent left, I just need to do it.
When me and father (Mr.23) were in the project. I use to write all the time, poems, short stories. He use to write also when he was there. I brought a word processor, I loved my machine. I'd come home clean, feed the kids, put them to bed and stay up at night writing. The kids weren't suppose to touch it. But my oldest daughter did and got a ink spot on it. She tried to clean it. She put Ajax on the machine, then water to wipe it off. There was no ink spot but it didn't work either. Water damage. Fortunately I was able to get it repaired under warranty. I had tunnel vision, all I could see was my writing was going to make me successful. All the writing books warned against writing for profit. They suggest that you write for yourself. Turns out I finished the novel when I moved back into my mothers' house, that's another story. Lost it when I sold the house and my good friend from high school found it and sent me a copy. Maybe I'll work on it again. After I typed 'the end' on that novel I had enough of it. I gave a lot of time to it and didn't want to touch it any more.
The novel I've currently been working on is good. I like my characters and I think I have a lot of twist and turns in it and I don't think it's predictable. I just need that drive I had when I worked on my first novel. I can blame it on my mate. I can blame it on the lupus and medication. But the bottom line is I don't have any discipline. I don't have the drive I use to though I'm just as hungry.
It's going to be a long week, I will write more as I have time. I guess this is my writing for myself, so it doesn't matter. This is one of the reason I write, it's where I have someone to listen to me. Paper and pen has always been my best friend. If only they could put their arms around me an hug me when I need it so desperately sometimes.
Saturday, October 9, 2010
Me Verse Lupus: Crack addiction and Lupus become a reality
Me Verse Lupus: Crack addiction and Lupus become a reality: "I had a good night last night. Sleep pretty good, once I went to sleep. I took 1 mg of Lorazpam. Up early checked the emails, FB. Didn't g..."
Crack addiction and Lupus become a reality
I had a good night last night. Sleep pretty good, once I went to sleep. I took 1 mg of Lorazpam. Up early checked the emails, FB. Didn't go to twitter yet, not sure if I really like it yet. I have a busy week coming up. Monday my daughter needs me to stay with the kids because of holiday. No problem I haven't seen them since last month. Wednesday I go for the Echo in the morning and that evening I go to another Lupus Seminar. Then Thursday I met my new Rhuemotologist. Still didn't get the bill for my medical records. I'm going to have to find time to go there and find out what's going on.
Still didn't get reimbursement check. I called Access-A- Ride and the woman in the reimbursement department was nasty as hell. They say you should receive your check in 4 to 6 weeks it's been 9. My mate sent receipts after me and she received her check. I should of spoke to her supervisor, but I'm trying not to be a bitch. I guess the woman who took my call is mad that she has a job during these difficult times. Damn she was nasty, when I questioned her about dates she didn't mention she said, "this is the last time I'm going to tell you." What kind of shit is that for a professional dealing with persons with disabilities. Okay I'm taking a deep breaths and exhaling.
I often get disappointed when I deal with people who work with the public and have such nasty attitude, when it's not warranted. She should loss her job for being nasty and get a job in a dark cubical in the back with no phone and no interaction with the public. She should enjoy that kind of job better, this way she can beat up on herself.
I always subscribe to the theory that you treat people the way you want to be treated. So what does that tell me. I should call back up on Monday and be a bitch, right? Nope, not me I'll just suck it up and be the one to curl up in the corner and wait for my check.
So where was I. Oh yea I got the apartment in the project and the new job as a bookkeeper in the Home Care Agency. My mother gave me some furniture, the mattress. I brought some second hand items and made a home. Rent-A-Center became my life savior. That's where the TV, the girls bunk bed and living room furniture came from. It was a two bed room apartment. The kids had the bedrooms and Mr. 23 and I had the living room.
Far Rockawy is a peninsula, border by the bay on one side and the ocean on the other. The air always tasted of salt, and there was always a cool breeze in the summer. In the winter the cool breeze was bitter cold. Traveling to and from work was almost a 2 hour journey. I would leave at 6:30 am and not arrive home until almost 7 pm. Mr. 23 would get there before me and prepare dinner for the kids. I would be tired and usually eat, shower and go to bed. I'm going to call Mr. 23 father now. Father helped them with their homework, we both attended parent/teacher night. Things were good. We had a 'normal life' for once.
Even my son who was having difficulties in second grade was doing okay. You see he was disruptive in class and the school suggest he have a psychic evaluation. He was diagnosed fine, high functioning and no problems. Here in Rockaway, just as in Jamaica, he associated himself with the wrong crowd.
When I moved back to NY he went to the neighborhood school. He was put in the first grade with children that were left back and trouble makers. These kids, also lived down the block from us. When my son who in school in Jersey was a star pupil, now he was just a statistic. I didn't know I had rights and could of pulled him from that class. All my teaching him to reading, writing and arithmetic, was all for naught, because the educational system screwed him. He had potential but he followed the crowd and wanted to hang out. I was always on his back, but he keep doing his thing.
The girls were fine. They had their room that I use to try and set up nice a girly and tell them to clean on Saturdays that took all day. While they were doing that I would be cleaning the apartment and talking on the phone with my sons' father in jail. Father never knew. I don't know why I use to talk to him. I knew he wouldn't be free for another 20 years or so.
After the apartment was cleaned I would cook and we'd play board games and watch TV as a family. Our apartment was the Kool-aid house. I would let their friends hang out so I knew where they were. They were good kids. I use to have them get together on Saturday morning and try and teach them black history, but they had enough of school during the week to sit in my classroom.
Eventually my mother gave me her car, our aunt gave her our cousins' car after he died. I loved that old dodge. Traveling became easier. Now I could shop at different stores, get home earlier, visit my mother more often. Take the kids out on the weekends, parks, movies and such.
Having a car didn't stop me from being tired and some weekends I would just lay in bed doing nothing. My hands would swell up and hurt. I couldn't use them, I would take Tylenol and the doctors would tell me it was arthritis. I use get my rashes, but that was normal. Father use to take care of me, he would cook, clean and take the kids out so I could rest. At night he would expect sex, as much as I enjoyed sex and a much as I was a freak. I was just too tired to have sex, even after resting all day.
He got frustrated and started going out and staying all night. He wasn't making any money to help with the bills and really there weren't any except the rent and phone bill. Car repairs sometimes. But like I did in Jersey City I would give him my money to try and "flip". I believed in that man more then he believed in himself. I was blind to his addiction for a long time. I know he was never with another woman, he didn't have time he was chasing drugs. A woman I would of been able to handle.
This one time he was gone for like three days. When he came home he had this bandage around his ribs and said he was in some accident and was in the hospital. We didn't have a phone so he couldn't call. I helped him take his clothes off, helped him in the shower. Feed him and tried to make him comfortable. That night in bed he start humping on me. The bastard played me again. There was nothing wrong with his ribs he was out on a binge smoking and drinking.
Just the beginning of his crack days and the symptoms of lupus surfacing.
Still didn't get reimbursement check. I called Access-A- Ride and the woman in the reimbursement department was nasty as hell. They say you should receive your check in 4 to 6 weeks it's been 9. My mate sent receipts after me and she received her check. I should of spoke to her supervisor, but I'm trying not to be a bitch. I guess the woman who took my call is mad that she has a job during these difficult times. Damn she was nasty, when I questioned her about dates she didn't mention she said, "this is the last time I'm going to tell you." What kind of shit is that for a professional dealing with persons with disabilities. Okay I'm taking a deep breaths and exhaling.
I often get disappointed when I deal with people who work with the public and have such nasty attitude, when it's not warranted. She should loss her job for being nasty and get a job in a dark cubical in the back with no phone and no interaction with the public. She should enjoy that kind of job better, this way she can beat up on herself.
I always subscribe to the theory that you treat people the way you want to be treated. So what does that tell me. I should call back up on Monday and be a bitch, right? Nope, not me I'll just suck it up and be the one to curl up in the corner and wait for my check.
So where was I. Oh yea I got the apartment in the project and the new job as a bookkeeper in the Home Care Agency. My mother gave me some furniture, the mattress. I brought some second hand items and made a home. Rent-A-Center became my life savior. That's where the TV, the girls bunk bed and living room furniture came from. It was a two bed room apartment. The kids had the bedrooms and Mr. 23 and I had the living room.
Far Rockawy is a peninsula, border by the bay on one side and the ocean on the other. The air always tasted of salt, and there was always a cool breeze in the summer. In the winter the cool breeze was bitter cold. Traveling to and from work was almost a 2 hour journey. I would leave at 6:30 am and not arrive home until almost 7 pm. Mr. 23 would get there before me and prepare dinner for the kids. I would be tired and usually eat, shower and go to bed. I'm going to call Mr. 23 father now. Father helped them with their homework, we both attended parent/teacher night. Things were good. We had a 'normal life' for once.
Even my son who was having difficulties in second grade was doing okay. You see he was disruptive in class and the school suggest he have a psychic evaluation. He was diagnosed fine, high functioning and no problems. Here in Rockaway, just as in Jamaica, he associated himself with the wrong crowd.
When I moved back to NY he went to the neighborhood school. He was put in the first grade with children that were left back and trouble makers. These kids, also lived down the block from us. When my son who in school in Jersey was a star pupil, now he was just a statistic. I didn't know I had rights and could of pulled him from that class. All my teaching him to reading, writing and arithmetic, was all for naught, because the educational system screwed him. He had potential but he followed the crowd and wanted to hang out. I was always on his back, but he keep doing his thing.
The girls were fine. They had their room that I use to try and set up nice a girly and tell them to clean on Saturdays that took all day. While they were doing that I would be cleaning the apartment and talking on the phone with my sons' father in jail. Father never knew. I don't know why I use to talk to him. I knew he wouldn't be free for another 20 years or so.
After the apartment was cleaned I would cook and we'd play board games and watch TV as a family. Our apartment was the Kool-aid house. I would let their friends hang out so I knew where they were. They were good kids. I use to have them get together on Saturday morning and try and teach them black history, but they had enough of school during the week to sit in my classroom.
Eventually my mother gave me her car, our aunt gave her our cousins' car after he died. I loved that old dodge. Traveling became easier. Now I could shop at different stores, get home earlier, visit my mother more often. Take the kids out on the weekends, parks, movies and such.
Having a car didn't stop me from being tired and some weekends I would just lay in bed doing nothing. My hands would swell up and hurt. I couldn't use them, I would take Tylenol and the doctors would tell me it was arthritis. I use get my rashes, but that was normal. Father use to take care of me, he would cook, clean and take the kids out so I could rest. At night he would expect sex, as much as I enjoyed sex and a much as I was a freak. I was just too tired to have sex, even after resting all day.
He got frustrated and started going out and staying all night. He wasn't making any money to help with the bills and really there weren't any except the rent and phone bill. Car repairs sometimes. But like I did in Jersey City I would give him my money to try and "flip". I believed in that man more then he believed in himself. I was blind to his addiction for a long time. I know he was never with another woman, he didn't have time he was chasing drugs. A woman I would of been able to handle.
This one time he was gone for like three days. When he came home he had this bandage around his ribs and said he was in some accident and was in the hospital. We didn't have a phone so he couldn't call. I helped him take his clothes off, helped him in the shower. Feed him and tried to make him comfortable. That night in bed he start humping on me. The bastard played me again. There was nothing wrong with his ribs he was out on a binge smoking and drinking.
Just the beginning of his crack days and the symptoms of lupus surfacing.
Friday, October 8, 2010
Me Verse Lupus: The better part of the past.
Me Verse Lupus: The better part of the past.: "Just got out the shower. Spent the day making 2 birthday cards. Are they nice? I think I'm reevaluating making cards for a business too tim..."
The better part of the past.
Just got out the shower. Spent the day making 2 birthday cards. Are they nice? I think I'm reevaluating making cards for a business too time consuming. I like using glitter designing them and adding my little touches. I just make cards for my love ones.
I just want to go to sleep now and wake up next week. I am tired and down in the dumps again. I feel fine just that nagging headache.
I started writing last night but Greys' Anatomy was about to come on.
I just got out of bed. I had honeydew melon juice, a lamb chop, rice, broccoli and carrots and a sandwich to eat yesterday. I went to bed hungry, didn't want to go upstairs to fix anything to eat. My mate wasn't home so I could do that. If she was here she would literly bash me until I eat something. I physically feel okay this morning. I have to go to a funeral this afternoon. My mates nieces' mother died and they need me to help get them their on Access-A-Ride. They're just going to view the body and return home.
Back to my life with Mr. 23 years. We got this apartment in Jersey City, poor, run down town. These people burned this avenue called Jackson when Martin Luther King died. When I was there in the early 80s' they still hadn't rebuilt the street, yet they renamed to to Martin Luther King Dr., (the locals still called it Jackson Ave.) There were I think 6 families living in our the building. The landlord lived under my apartment and her friend lived above my apartment. When she had the exterminator come, she would only have them spray her apartment and the apartment upstairs. Guess where the roaches hid? The other family upstairs had a bunch of kids, teenagers. They use to eat out the garbage because they were so hungry. The first time I saw someone eat out the garbage was when we lived in the hotels. This man went through the garbage in front of this restaurant and filled a tin pan with food and sat against the wall and ate it. As I tell my story there were many nights that my children and I went to bed without anything to eat, but we were never hungry enough to go through the garbage.
Back to Jersey City, the people that lived across the hall were my friends, only her man use to beat her ass. I spent many nights walking her to the ER. The other family on my floor were cool, nothing special just regular people. The family next to the landlord, she was my friend too. She had a four year old girl, a two year old son and a set of one year old twins. Her man also use to beat her. She use to litterly run out her apartment and hid in mine. She would leave the children. This one time it was raining and he put the children out in the rain to smoke her out. She yelled at the kids from my window and this mother fucker came running upstairs and tried to break into my apartment. I was nine months pregnant. When Mr. 23 years came home a few days later he confronted this, woman beater and he bitched up. A few weeks later him and his cousin raped the four year old girl. They gave her shyphlis. They took her children from the mother and locked him up. This sick woman asked me for paper and pen so she could write a "love" letter to this man. Unbelievable, but true.
I moved home with my mother in a small room with my three kids. My sister, her husband and their three kids lived there also. Neither of them worked or supported themselves. I use to get so angry when I went shopping and see them eat up the food and drinks I brought. I didn't say anything and my mother would tell me it's okay. Today I see things different we are family and we take care of each other, or should.
I complained about this to Mr. 23, at the same time I was annoyed with Mr. 23 years, he wasn't doing anything to get us out of this situation. I started going to school. I took out a loan to take a computer class. No computers at night so I just took a clerk/typist class. My brother was working at another school and was angry I didn't sign with his school so he could get the commission. This school was closer to home less traveling. This was a mistake, I created a student loan bill for a course that taught clerical work. Waste of funds that I could of used to get a degree. Well maybe not I did have the skills to carry me through out my employment career.
This was it I was going to break it off with Mr. 23 years, then he got hit with a motorcycle and broke his tibia bone. He was told he would never walk again. First time I saw him cry, doctor asked, 'you going to cry in front of your lady,' he said, 'this shit hurts, hell yea.' I couldn't leave him then. When he was released from the hospital he went to live with his cousin. They drove his aunt crazy, all day they would smoke reefer and free base. (Before they sold crack, they use to cook cocaine and smoke it.) I was getting plenty of cocaine for thirty dollars. I would give him some, I didn't know he was smoking it.
We moved into his step fathers' basement. Kids went to school in the area, I was active with the PTA. I was a school mother, always on site. There was this woman who was very political and community active she offered me a job. I started working for Manpower, I was a job developer.
Mr. 23 years leg was just healing. I got him a job, he towed rubbish from buildings that were under construction. He met this guy there and they became good friend. (Later this guy saved my life.) Mr. 23 became strung out on the base, now he was getting it ready made, crack. His shasty behavior just started to begin. One night him and his brother had this guy over in the basement, when the guy left I went into the kitchen area, they had all this white powder on the table. I was so mad that they left the baking soda all over for the kids to get at. I brushed it off onto the floor. It wasn't baking soda, it was a mountain of cocaine. All Mr. 23's brother could do was smile.
I moved back to my mothers. I got a job in Manhattan working for an answering service. (I met folks like Alan Payne, Lillian Thompson, Jackie Harry and a lot of actors that were extras. I met Danzel Washington over the phone. His bill was over due by three months. I received his call, when he called to question the bill. Very nice man, he wasn't famous as he is today, in fact I don't think I even knew him, only that he was the lead in the play Dream Girls.)
Life was pretty good. I had a job I enjoyed, the kids were in school and daycare. Mr. 23 was doing his thing. I got offered a job in the home care agency. Making twice as much as I was making with the answering service. I would have good benefits for me and kids. Then I got called for a project apartment in Far Rockaway. Mr. 23 asked if I wanted him to move with me. I let him, a mistake. But I loved him and I really believed that we would work. We had good times, hard but nothing compared to what crack was going to do to our lives.
I just want to go to sleep now and wake up next week. I am tired and down in the dumps again. I feel fine just that nagging headache.
I started writing last night but Greys' Anatomy was about to come on.
I just got out of bed. I had honeydew melon juice, a lamb chop, rice, broccoli and carrots and a sandwich to eat yesterday. I went to bed hungry, didn't want to go upstairs to fix anything to eat. My mate wasn't home so I could do that. If she was here she would literly bash me until I eat something. I physically feel okay this morning. I have to go to a funeral this afternoon. My mates nieces' mother died and they need me to help get them their on Access-A-Ride. They're just going to view the body and return home.
Back to my life with Mr. 23 years. We got this apartment in Jersey City, poor, run down town. These people burned this avenue called Jackson when Martin Luther King died. When I was there in the early 80s' they still hadn't rebuilt the street, yet they renamed to to Martin Luther King Dr., (the locals still called it Jackson Ave.) There were I think 6 families living in our the building. The landlord lived under my apartment and her friend lived above my apartment. When she had the exterminator come, she would only have them spray her apartment and the apartment upstairs. Guess where the roaches hid? The other family upstairs had a bunch of kids, teenagers. They use to eat out the garbage because they were so hungry. The first time I saw someone eat out the garbage was when we lived in the hotels. This man went through the garbage in front of this restaurant and filled a tin pan with food and sat against the wall and ate it. As I tell my story there were many nights that my children and I went to bed without anything to eat, but we were never hungry enough to go through the garbage.
Back to Jersey City, the people that lived across the hall were my friends, only her man use to beat her ass. I spent many nights walking her to the ER. The other family on my floor were cool, nothing special just regular people. The family next to the landlord, she was my friend too. She had a four year old girl, a two year old son and a set of one year old twins. Her man also use to beat her. She use to litterly run out her apartment and hid in mine. She would leave the children. This one time it was raining and he put the children out in the rain to smoke her out. She yelled at the kids from my window and this mother fucker came running upstairs and tried to break into my apartment. I was nine months pregnant. When Mr. 23 years came home a few days later he confronted this, woman beater and he bitched up. A few weeks later him and his cousin raped the four year old girl. They gave her shyphlis. They took her children from the mother and locked him up. This sick woman asked me for paper and pen so she could write a "love" letter to this man. Unbelievable, but true.
I moved home with my mother in a small room with my three kids. My sister, her husband and their three kids lived there also. Neither of them worked or supported themselves. I use to get so angry when I went shopping and see them eat up the food and drinks I brought. I didn't say anything and my mother would tell me it's okay. Today I see things different we are family and we take care of each other, or should.
I complained about this to Mr. 23, at the same time I was annoyed with Mr. 23 years, he wasn't doing anything to get us out of this situation. I started going to school. I took out a loan to take a computer class. No computers at night so I just took a clerk/typist class. My brother was working at another school and was angry I didn't sign with his school so he could get the commission. This school was closer to home less traveling. This was a mistake, I created a student loan bill for a course that taught clerical work. Waste of funds that I could of used to get a degree. Well maybe not I did have the skills to carry me through out my employment career.
This was it I was going to break it off with Mr. 23 years, then he got hit with a motorcycle and broke his tibia bone. He was told he would never walk again. First time I saw him cry, doctor asked, 'you going to cry in front of your lady,' he said, 'this shit hurts, hell yea.' I couldn't leave him then. When he was released from the hospital he went to live with his cousin. They drove his aunt crazy, all day they would smoke reefer and free base. (Before they sold crack, they use to cook cocaine and smoke it.) I was getting plenty of cocaine for thirty dollars. I would give him some, I didn't know he was smoking it.
We moved into his step fathers' basement. Kids went to school in the area, I was active with the PTA. I was a school mother, always on site. There was this woman who was very political and community active she offered me a job. I started working for Manpower, I was a job developer.
Mr. 23 years leg was just healing. I got him a job, he towed rubbish from buildings that were under construction. He met this guy there and they became good friend. (Later this guy saved my life.) Mr. 23 became strung out on the base, now he was getting it ready made, crack. His shasty behavior just started to begin. One night him and his brother had this guy over in the basement, when the guy left I went into the kitchen area, they had all this white powder on the table. I was so mad that they left the baking soda all over for the kids to get at. I brushed it off onto the floor. It wasn't baking soda, it was a mountain of cocaine. All Mr. 23's brother could do was smile.
I moved back to my mothers. I got a job in Manhattan working for an answering service. (I met folks like Alan Payne, Lillian Thompson, Jackie Harry and a lot of actors that were extras. I met Danzel Washington over the phone. His bill was over due by three months. I received his call, when he called to question the bill. Very nice man, he wasn't famous as he is today, in fact I don't think I even knew him, only that he was the lead in the play Dream Girls.)
Life was pretty good. I had a job I enjoyed, the kids were in school and daycare. Mr. 23 was doing his thing. I got offered a job in the home care agency. Making twice as much as I was making with the answering service. I would have good benefits for me and kids. Then I got called for a project apartment in Far Rockaway. Mr. 23 asked if I wanted him to move with me. I let him, a mistake. But I loved him and I really believed that we would work. We had good times, hard but nothing compared to what crack was going to do to our lives.
Thursday, October 7, 2010
Me Verse Lupus: I was busy, like I had a real life.
Me Verse Lupus: I was busy, like I had a real life.: "It's after 11pm. I'm tired but feel like I'm high on cocaine. I got the jitters, my mind is racing faster then the speed of light. I just t..."
I was busy, like I had a real life.
It's after 11pm. I'm tired but feel like I'm high on cocaine. I got the jitters, my mind is racing faster then the speed of light. I just took 1.5 mg of Lorazapam and still awake.
I met the cardiologist yesterday. I think I'll have an affair with him. He was pleasant, compassionate and just as focused as the pulmonary doctor I meet Monday. He explained that he can't start me on medication because they don't know what my lung and heart pressure is. During the Cauterazation they will be giving me meds to see which ones suite me. First I need an echo cardiogram. I could have had it of today, but no co-payment. I don't want to ask my mate for anymore help. She gives me such dirty faces, and sucks her teeth when i ask for money. let me leave it alone, I don't want to going there. So I'll have the echo next Wednesday, hopefully I'll have the Cauterization within two weeks from today. This doctor asked me about taking Lasix and water pills. I told him that the doctors had me stop taking them because my potassium levels were always low, despite the supplements I take. He explained that it was the steroids that deplete the potassium. He asked if I felt good when I took the water pills, I told him I don't know what good is. I haven't felt good in so long. He told me, what I thought may have been an illusion, or a great sales pitch at least. He said, I would feel better soon. Can you believe this? He said there is no doubt that I have COPD, IDL, PF and PH. But he believes since both my mother and father had heart problems, my major health issues may be my heart.
Okay the heart, if that stops working that it, lights out forever. But knowing what is wrong and being treated for it, is hopeful. Hope that maybe I will be able to live a little. Maybe using the oxygen less when walking. I still have to wait, but the wait is short now. I just want to do this test and move on to the next stage.
I went to the NYC Hospital Tour last night. As always they give you the assress to the hospital and not where the seminar will be at. Access-A-Ride let me out in front of the hospital. I found out the seminar was around the corner. I walked, got cramps in my legs, pains in my chest and tears in my eyes, I made it. I called Access-A-Ride and asked them to adjust my pick up location. No problem I was told. Hump!
I assisted this lady with the same issue with Access-A-Ride. That done we went in and helped our selves to baked ziti, string beans, rice, chichen in gravey with vegatables. There were cut mellons and pineapples and cookies. I had a coco-cola, well two. I use to be addicted to the stuff. Stopped drinking it regularly about 6 years ago. Loss weight too. I just couldn't resist.
There was a Dr. Beckerman who is conducting surveys, with the Yeshiva University. She is trying to find out, what we as lupus suffers/survivors are feeling. What are we going through. In addition , they are working to educate doctors in how to reconize Lupus symptoms. I know, that if the doctors that I saw years ago knew the right questions to ask, I may have been able to treat this lupus earlier in my life. But that's neither here nor there, the past is past, and I am trying to move on. But at least some other poor luppie may benifit from this training.
There was a Dr. Mackay who discussed the strides they are making in research. Speaking of our anticipated Christmas gift hopefully. Then the head doctor of Jamaica Hospital Ophthalmology department spoke to us about our eyes. He explained that doctors takes their lupus patients off and on plaqueline in an effort to save their eyes. He said damage from plaqueline, if discovered early, is reversable. He explained that any problems that may arise in the eyes is very painful. We can't see it by lookinf at our own eyes it must be done by an ophthalmologist. Symptoms are dry eyes, sores on the lids sometimes inside. Also cataracts develope as a result of steroids. Basically we need to have our eyes check at least every six months.
When the meeting ended, several of the patients swarmed the buffet and took the food home. One lady even brought her own tuperware. The program was video taped and should be aired on the NY Lupus Foundation web site. If they got me in any of the shots I will be the baby elephant. Doubt if I'll be in any shots though. I felt left out. I wasn't people spoke to me, I'm just lonely and wanted conversation.
Any way I went outside and the lady I helped with Access-A-Ride was still there. She called them and they told her the bus was going to come to the new address. I called and they told me that they weren't coming to the new address, that I would have to walk to the other side of the building. The lady and I walked, entered the ER through the ambulance entrance. We walked through and no one stopped us. We made it to the front of the building and my car pulled up. The lady however missed her bus. I felt so bad for her. I was so angry, I cried of course. Again, my calves cramped up, and my chest got tight. If I had money I would have gotten taxi authorization back. But as it was I asked my mate for $4.50, $2.25 to get there and $2.25 to return. I didn't have a penny more. Had I missed Access-A-Ride I would have been stuck. I guess I would of had to walk, I damn sure wouldn't have called my mate. When we met she told me she would take care of me. Funny how things change. When we met I was working and making good money.
Now it's 12:30am and I am till wide awake. I can't turn the TV on it others her. So I'll read my nook and see if I can get some sleep.
I met the cardiologist yesterday. I think I'll have an affair with him. He was pleasant, compassionate and just as focused as the pulmonary doctor I meet Monday. He explained that he can't start me on medication because they don't know what my lung and heart pressure is. During the Cauterazation they will be giving me meds to see which ones suite me. First I need an echo cardiogram. I could have had it of today, but no co-payment. I don't want to ask my mate for anymore help. She gives me such dirty faces, and sucks her teeth when i ask for money. let me leave it alone, I don't want to going there. So I'll have the echo next Wednesday, hopefully I'll have the Cauterization within two weeks from today. This doctor asked me about taking Lasix and water pills. I told him that the doctors had me stop taking them because my potassium levels were always low, despite the supplements I take. He explained that it was the steroids that deplete the potassium. He asked if I felt good when I took the water pills, I told him I don't know what good is. I haven't felt good in so long. He told me, what I thought may have been an illusion, or a great sales pitch at least. He said, I would feel better soon. Can you believe this? He said there is no doubt that I have COPD, IDL, PF and PH. But he believes since both my mother and father had heart problems, my major health issues may be my heart.
Okay the heart, if that stops working that it, lights out forever. But knowing what is wrong and being treated for it, is hopeful. Hope that maybe I will be able to live a little. Maybe using the oxygen less when walking. I still have to wait, but the wait is short now. I just want to do this test and move on to the next stage.
I went to the NYC Hospital Tour last night. As always they give you the assress to the hospital and not where the seminar will be at. Access-A-Ride let me out in front of the hospital. I found out the seminar was around the corner. I walked, got cramps in my legs, pains in my chest and tears in my eyes, I made it. I called Access-A-Ride and asked them to adjust my pick up location. No problem I was told. Hump!
I assisted this lady with the same issue with Access-A-Ride. That done we went in and helped our selves to baked ziti, string beans, rice, chichen in gravey with vegatables. There were cut mellons and pineapples and cookies. I had a coco-cola, well two. I use to be addicted to the stuff. Stopped drinking it regularly about 6 years ago. Loss weight too. I just couldn't resist.
There was a Dr. Beckerman who is conducting surveys, with the Yeshiva University. She is trying to find out, what we as lupus suffers/survivors are feeling. What are we going through. In addition , they are working to educate doctors in how to reconize Lupus symptoms. I know, that if the doctors that I saw years ago knew the right questions to ask, I may have been able to treat this lupus earlier in my life. But that's neither here nor there, the past is past, and I am trying to move on. But at least some other poor luppie may benifit from this training.
There was a Dr. Mackay who discussed the strides they are making in research. Speaking of our anticipated Christmas gift hopefully. Then the head doctor of Jamaica Hospital Ophthalmology department spoke to us about our eyes. He explained that doctors takes their lupus patients off and on plaqueline in an effort to save their eyes. He said damage from plaqueline, if discovered early, is reversable. He explained that any problems that may arise in the eyes is very painful. We can't see it by lookinf at our own eyes it must be done by an ophthalmologist. Symptoms are dry eyes, sores on the lids sometimes inside. Also cataracts develope as a result of steroids. Basically we need to have our eyes check at least every six months.
When the meeting ended, several of the patients swarmed the buffet and took the food home. One lady even brought her own tuperware. The program was video taped and should be aired on the NY Lupus Foundation web site. If they got me in any of the shots I will be the baby elephant. Doubt if I'll be in any shots though. I felt left out. I wasn't people spoke to me, I'm just lonely and wanted conversation.
Any way I went outside and the lady I helped with Access-A-Ride was still there. She called them and they told her the bus was going to come to the new address. I called and they told me that they weren't coming to the new address, that I would have to walk to the other side of the building. The lady and I walked, entered the ER through the ambulance entrance. We walked through and no one stopped us. We made it to the front of the building and my car pulled up. The lady however missed her bus. I felt so bad for her. I was so angry, I cried of course. Again, my calves cramped up, and my chest got tight. If I had money I would have gotten taxi authorization back. But as it was I asked my mate for $4.50, $2.25 to get there and $2.25 to return. I didn't have a penny more. Had I missed Access-A-Ride I would have been stuck. I guess I would of had to walk, I damn sure wouldn't have called my mate. When we met she told me she would take care of me. Funny how things change. When we met I was working and making good money.
Now it's 12:30am and I am till wide awake. I can't turn the TV on it others her. So I'll read my nook and see if I can get some sleep.
Subscribe to:
Posts (Atom)