My family
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.
Monday, October 4, 2010
Me Verse Lupus: It was love at first smile
Me Verse Lupus: It was love at first smile: "I arrived home from the doctor about two hours ago. My doctor, handsome that he is, and when he smiles, I feel like I'm in good hands. His ..."
It was love at first smile
I arrived home from the doctor about two hours ago. My doctor, handsome that he is, and when he smiles, I feel like I'm in good hands. His hands that took my blood pressure, checked the swelling in my legs and gave me my yearly flu shot. He checked my breathing level and said it was good. He listens!!! Yes he heard my fears and questions. He confirmed that I do have pulmonary hypertension, but he can't treat it until I get the heart cauterization to see what medication will help me. He said I'm not going to die tomorrow!!! Which I was afraid of, yea, yea I know this morning I said I was ready to give up. I lied, I want to live and live looooong! He refereed me to a cardiologist, who I will see me tomorrow. I do feel bad about canceling the doctor I saw Friday but, he didn't smile not once and I didn't even feel comfortable asking for my prescriptions. My new doctor is good. When his assistant would interrupted him, he remembered what he was talking to me about. He didn't lecture me or speak to me like he was disgusted with my weight. He just gave me a script to go to rehab. I think I'm in love. He's what a doctor should be. Patient, through and compassionate.
I know I said I would tell more of my life with Mr. 23 years but it will have to wait. I have a birthday card to do. I want to finish my family newsletter and look into this rehab facility. I guess it's a good thing I don't have time, because tomorrow I will be out and on Wednesday I'm going to the Lupus conference on lupus and your eyes. I have a life for a few days. Wooowhoooo!
I know I said I would tell more of my life with Mr. 23 years but it will have to wait. I have a birthday card to do. I want to finish my family newsletter and look into this rehab facility. I guess it's a good thing I don't have time, because tomorrow I will be out and on Wednesday I'm going to the Lupus conference on lupus and your eyes. I have a life for a few days. Wooowhoooo!
Me Verse Lupus: Just a regular day to speak of
Me Verse Lupus: Just a regular day to speak of: "I was lazy yesterday. I layed around all day watching movies. I slept all night, well I did get up several times to go to the bathroom and ..."
Just a regular day to speak of
I was lazy yesterday. I layed around all day watching movies. I slept all night, well I did get up several times to go to the bathroom and I'm up this morning at 6 am. I could have continue to sleep, but I'm going to see new pulmonary doctor. Oh boy here we go again. The thing this time is, I'm sure he's going to say he doesn't take my insurance. He was on the list of doctors 2 weeks ago but wasn't on there on Saturday. So I'll be there before 11am and I'll be waiting until 1 pm for my ride back home. I'm taking my nook and ipod to stay busy. And guess what it's one of my favorite days, rain, hard rain and I have to go out. I do so love the rain, especially fall rain, it has a chill in the air that makes curling up in bed so comforting. But I need to go out.
I said no more crying, whining or feeling sorry for myself. I was in that mood on Saturday. I cried all day long, all you had to do was say boo. That doctor put me in that mood, having to wait another month and half to before he would even schedule the heart cauterization. This delay will cause the pulmonary hypertension to progress and cause more damage to my lungs. I was feeling tired, tired of fighting, tired of hoping for a miracle. I was having that feeling of just wanting to hide in my sleep and dream where I can live a normal life, only my dreams are anything but normal. I see all my family in my dreams, my mother, grandmother, brother and different aunts and uncles who have left this earth long ago come to visit. And all kinds of crazy things go on. Right now I can't even remember one.
I guess I need to do something. Get out and see people, talk to some one about something other then my health.
I know I left my pass story with Mr. 23 years up in the air. When I come home this evening I'll write some more. Time to shower and dress for this appointment.
I said no more crying, whining or feeling sorry for myself. I was in that mood on Saturday. I cried all day long, all you had to do was say boo. That doctor put me in that mood, having to wait another month and half to before he would even schedule the heart cauterization. This delay will cause the pulmonary hypertension to progress and cause more damage to my lungs. I was feeling tired, tired of fighting, tired of hoping for a miracle. I was having that feeling of just wanting to hide in my sleep and dream where I can live a normal life, only my dreams are anything but normal. I see all my family in my dreams, my mother, grandmother, brother and different aunts and uncles who have left this earth long ago come to visit. And all kinds of crazy things go on. Right now I can't even remember one.
I guess I need to do something. Get out and see people, talk to some one about something other then my health.
I know I left my pass story with Mr. 23 years up in the air. When I come home this evening I'll write some more. Time to shower and dress for this appointment.
Saturday, October 2, 2010
Me Verse Lupus: The doctor thinks he's God
Me Verse Lupus: The doctor thinks he's God: "It's is my kind of weather out there. I layed in bed under the covers this morning just enjoying the cool air. It rained all day yesterday..."
The doctor thinks he's God
It's is my kind of weather out there. I layed in bed under the covers this morning just enjoying the cool air. It rained all day yesterday another of my favorite forecast, only I was out in that wet stuff. I had that doctors appointment with a new doctor.
I took Access-A-Ride to the office, I was early so I went to the grocery store and picked up some celery, some bread, a pound of turkey breast and a pound of American cheese. I walk what was about a block to the doctors' office. There were steps, two flights. I considered changing my mind about this doctor. I sucked it up, lifted my oxygen and made it up the stairs. My chest was tight, I got dizzy and I started sweating.
I went to this doctor 3 years ago to get clearance for my hysterectomy, he's a cardiologist. I told him I wanted him to be my primary doctor and he asked about my previous doctor. I told him I had a lot of health issues now and I didn't think the previous doctor could handle me. I didn't say is so bluntly but he got the gist. I think that turned him off. You see the previous doctor ignored my symptoms. In fact that doctor told me I was narcissistic. I did consider going back to him when I got this insurance, but thought about my health. I liked that doctor, he was easy to talk to. But I don't think he would be best for me now. Besides he only has evening office hours and he's very crowed.
So I gave this cardiologist an update on my health. I told him about the Pulmonary Hypertension and he says he's sure I have it and told me it's a progressive disease. He listened to my lungs, heart and said he will have me come back and do an echo. He said I should do a full heart cauterization. Then he said he'll find a pulmonary doctor, I told him I have an appoint with one on Monday. He looked annoyed.
I wanted to talk to him about my headaches, the numbness in my mouth and the dizziness. And that I don't sleep. He kind of dismissed me, I did not feel comfortable with him. When I told him I needed medication he seemed shocked, again annoyed, so I told him I only needed my blood pressure medication. I've been taking meds for over 2 years, I can't go with out them. It wasn't like I was asking for Oxycontin or some narcotic. He didn't schedule me for another appointment until the middle of November, was I suppose to go with out meds until then? I'm going to reduced my steroids myself to 10mg, that should hold me until I see the Rhuematalogist. I'll take one potassium a day and one acylovire hopefully I'll be fine.
I see a new pulmonary doctor on Monday, I'll get him to refer me to a primary doctor that's a cardiologist. This way the two of them can work together. I know this may sound racist but I'm just going to state a fact. Very few black folks know how to handle business. They start a company, open an office but fail to develop the skills to be customer friendly. It is the customer that makes the business. You can spend billions on marketing, yet, the best advertising is when a customer recommends your business and the most negative is when a customer is not satisfied. I am very much unsatisfied with that doctor I meet yesterday. He didn't smile, reassure me or try to make me comfortable with him. It appeared that he has a God complex. Like I should be thankful he's giving me the crumbs of his time.
I'm not a fighter, remember. I don't want to go back to him but I don't know what to do. Should I asked the pulmonary doctor Monday for a recommendation? Should I just go back to him and see how it works out?
It's times like this that I wish I had someone to advocate for me. This is one of those instances that I feel alone. But I vowed no more crying, whining or self pitting. It'll work out God is with me and will carry me through.
I took Access-A-Ride to the office, I was early so I went to the grocery store and picked up some celery, some bread, a pound of turkey breast and a pound of American cheese. I walk what was about a block to the doctors' office. There were steps, two flights. I considered changing my mind about this doctor. I sucked it up, lifted my oxygen and made it up the stairs. My chest was tight, I got dizzy and I started sweating.
I went to this doctor 3 years ago to get clearance for my hysterectomy, he's a cardiologist. I told him I wanted him to be my primary doctor and he asked about my previous doctor. I told him I had a lot of health issues now and I didn't think the previous doctor could handle me. I didn't say is so bluntly but he got the gist. I think that turned him off. You see the previous doctor ignored my symptoms. In fact that doctor told me I was narcissistic. I did consider going back to him when I got this insurance, but thought about my health. I liked that doctor, he was easy to talk to. But I don't think he would be best for me now. Besides he only has evening office hours and he's very crowed.
So I gave this cardiologist an update on my health. I told him about the Pulmonary Hypertension and he says he's sure I have it and told me it's a progressive disease. He listened to my lungs, heart and said he will have me come back and do an echo. He said I should do a full heart cauterization. Then he said he'll find a pulmonary doctor, I told him I have an appoint with one on Monday. He looked annoyed.
I wanted to talk to him about my headaches, the numbness in my mouth and the dizziness. And that I don't sleep. He kind of dismissed me, I did not feel comfortable with him. When I told him I needed medication he seemed shocked, again annoyed, so I told him I only needed my blood pressure medication. I've been taking meds for over 2 years, I can't go with out them. It wasn't like I was asking for Oxycontin or some narcotic. He didn't schedule me for another appointment until the middle of November, was I suppose to go with out meds until then? I'm going to reduced my steroids myself to 10mg, that should hold me until I see the Rhuematalogist. I'll take one potassium a day and one acylovire hopefully I'll be fine.
I see a new pulmonary doctor on Monday, I'll get him to refer me to a primary doctor that's a cardiologist. This way the two of them can work together. I know this may sound racist but I'm just going to state a fact. Very few black folks know how to handle business. They start a company, open an office but fail to develop the skills to be customer friendly. It is the customer that makes the business. You can spend billions on marketing, yet, the best advertising is when a customer recommends your business and the most negative is when a customer is not satisfied. I am very much unsatisfied with that doctor I meet yesterday. He didn't smile, reassure me or try to make me comfortable with him. It appeared that he has a God complex. Like I should be thankful he's giving me the crumbs of his time.
I'm not a fighter, remember. I don't want to go back to him but I don't know what to do. Should I asked the pulmonary doctor Monday for a recommendation? Should I just go back to him and see how it works out?
It's times like this that I wish I had someone to advocate for me. This is one of those instances that I feel alone. But I vowed no more crying, whining or self pitting. It'll work out God is with me and will carry me through.
Friday, October 1, 2010
Me Verse Lupus: No more whinning, no more crying, the next round i...
Me Verse Lupus: No more whinning, no more crying, the nest round i...: "I knew this was going to happen. It's 1:30am and I am wide awake even though I took 1mg of Lorazapam. Going to the doctors always does this ..."
No more whinning, no more crying, the next round is mine.
I knew this was going to happen. It's 1:30am and I am wide awake even though I took 1mg of Lorazapam. Going to the doctors always does this to me, especially when I'm seeing a new doctor. He's a cardiologist, he's going to take one look at my fat ass and think I have no will power. He will be right. I went out today, guess where, to Walgreen's and got a big bag of Kit Kat's, peanut butter cups, snickers, spice drops, my favorite Hersey white chocolate melt away bliss and a bag of chips. What the Fuck?! It's the steroids, it's the loneliness, it's not smoking and needing something to do. The list can go on. But the bottom line is I need to develop will power. I need to buy fruit, not really a fruit eater, but I can do frozen grapes, blueberries, pineapples and I do like pears. I planed to get cottage cheese and eat that with the fruit. I tried carrots and celery once. Path mark even sells them ready to eat. But I don't have that many teeth left and it's too much work chewing.
I don't have anything else but the sweets, I don't go anywhere, my phone doesn't ring. No sex. Hell the highlight of my week was watching Greys' Anatomy.
I told myself today that I wasn't going to cry no more. I was going to get over the bullshit and start living. After all this blog is Me Verse Lupus, thus far I would say lupus is wining. But I'm heading into the ninth round with renewed strengthen and coming out of my corner with hay makers, I'm going to kick some lupus ass. I'm going to work on my novel and write a poem. I've been scribbling, I'm going to scribble a finished product. It's a new day and I'm going to find the me, Lupus kidnapped and hid in plain sight. The crying and pitty party aint getting me no where.
First I'm going to go back to bed and lay down. I need to get up and take care of my face. Lupus means wolf, because of the malar rash some people get around their nose and cheeks. For me it's the hair that grows on my face from the steroids. I like to Nair it away before I see doctors. I may be 2 tons of fun, but at least I'm groomed.
Until later, smile.
I don't have anything else but the sweets, I don't go anywhere, my phone doesn't ring. No sex. Hell the highlight of my week was watching Greys' Anatomy.
I told myself today that I wasn't going to cry no more. I was going to get over the bullshit and start living. After all this blog is Me Verse Lupus, thus far I would say lupus is wining. But I'm heading into the ninth round with renewed strengthen and coming out of my corner with hay makers, I'm going to kick some lupus ass. I'm going to work on my novel and write a poem. I've been scribbling, I'm going to scribble a finished product. It's a new day and I'm going to find the me, Lupus kidnapped and hid in plain sight. The crying and pitty party aint getting me no where.
First I'm going to go back to bed and lay down. I need to get up and take care of my face. Lupus means wolf, because of the malar rash some people get around their nose and cheeks. For me it's the hair that grows on my face from the steroids. I like to Nair it away before I see doctors. I may be 2 tons of fun, but at least I'm groomed.
Until later, smile.
Thursday, September 30, 2010
Me Verse Lupus: A new day to speak of.
Me Verse Lupus: A new day to speak of.: "Woke up feeling pretty good today. It's raining, my kind of day. I'm developing a heavy cough with phlegm, throat is itchy. I don't know ..."
A new day to speak of.
Woke up feeling pretty good today. It's raining, my kind of day. I'm developing a heavy cough with phlegm, throat is itchy. I don't know if I'm getting sick or if something is irritating me. It is allergy season, and I stopped taking the Claritin and Nasonex. I really don't want to take any more drugs unless I absolutely need to. I'm sure some of the other luppies reading this, if there are still any, can understand this.
I take four pills before breakfast, seven pills with breakfast including three vitamins. It would be more except because of my potassium level I can't take the water pills and the doctor took me off the plaquline for safty measures. In the afternoon I take two more high blood pressure pills and before bed I take five more pills that's a total of 21 pills to keep me alive. Not feeling well, alive. Oh did I forget to mention I suck in breathing medications twice a day, spriva once in the morning and advair once in the morning and once at night. I wouldn't mind a pill to help me sleep at night though and maybe one that will make me feel like me again.
Tomorrow I go to my new doctor. I still didn't get the bill for to purchase my medical records. They would of been a big help. At least I have the CD of my lungs and the letter from the doctor at Columbia describing his findings. The one positive is that I saw this doctor before and he did a echo of my heart and he has the machines in his office. I'm a bit anxious and I'm sure the anxiety will keep me up tonight.
I've been telling the story of my life with Mr. 23 years. I was trying to remember the physical pains. When I was a teenager, I remember going to the beach and I layed out in the sun getting tanned. That evening my skin was swollen and I had these little pimples all over. I figured it was from the sand slapping my skin and a sever case of prickly heat. When I got diagnoised with lupus I was looking at the rashes and I found that rash. Rashes were never a big thing for me. I had them my whole life. I did notice over the years that they usually appeared after sun exposure. One of the reasons I alway suspected Lupus, I knew about the sun sensitivity because my mother always wore sunscreen and hats and wouldn't go outside during the day. My hands would swell up and hurt but I played handball for years and just assumed the swelling was arthritis. I always told the doctors that I had arthritis and they took me at my word. I was never tested, didn't know they did a test for arthritis. I learned now the biggest mistake is to tell a doctor what you have before they tell you. I was doing his job for him.
We moved in with a friend of Mr. 23. He was in an accident some years before I met him and he got the money from the law suite. He go about ten thousand dollars. He had plans to open a store. Always quick money was on his mind. He cashed the check and they gave him thousand dollar bills and five hundred dollar bills. They are out of circulation now. He showed off the money. He brought himself a new wardrobe and gave me two hundred dollars to buy material for me to make me and the kids clothes with the sewing machine he brought me. I didn't know how to sew. He brought drugs and kept everyone that came around high. His friend was disgusted and told us to leave. His money was short and we found the piece of shit apartment in Jersey City. It was there that I got pregnate with my youngest child. It was our first real home. He started staying out at night and for days. I use to get a welfare check on the first of the month everyone in the town did and there was only one check cashing place. He would take the rent money. No I would give it to him, after he beged for it. He use to say he was going to take the money and flip it, double it. It never happened but I trusted him month after month. When I gave birth he had a party and didn't come to visit me in the hospital. It was then that my feelings started changing for him. My health started changing too. I would get headaches, swelling hands and tired. I guess that was the stress but it still wasn't enough to alarm me. It wasn't until I moved back home with three kids that my symptoms started to really surface.
I take four pills before breakfast, seven pills with breakfast including three vitamins. It would be more except because of my potassium level I can't take the water pills and the doctor took me off the plaquline for safty measures. In the afternoon I take two more high blood pressure pills and before bed I take five more pills that's a total of 21 pills to keep me alive. Not feeling well, alive. Oh did I forget to mention I suck in breathing medications twice a day, spriva once in the morning and advair once in the morning and once at night. I wouldn't mind a pill to help me sleep at night though and maybe one that will make me feel like me again.
Tomorrow I go to my new doctor. I still didn't get the bill for to purchase my medical records. They would of been a big help. At least I have the CD of my lungs and the letter from the doctor at Columbia describing his findings. The one positive is that I saw this doctor before and he did a echo of my heart and he has the machines in his office. I'm a bit anxious and I'm sure the anxiety will keep me up tonight.
I've been telling the story of my life with Mr. 23 years. I was trying to remember the physical pains. When I was a teenager, I remember going to the beach and I layed out in the sun getting tanned. That evening my skin was swollen and I had these little pimples all over. I figured it was from the sand slapping my skin and a sever case of prickly heat. When I got diagnoised with lupus I was looking at the rashes and I found that rash. Rashes were never a big thing for me. I had them my whole life. I did notice over the years that they usually appeared after sun exposure. One of the reasons I alway suspected Lupus, I knew about the sun sensitivity because my mother always wore sunscreen and hats and wouldn't go outside during the day. My hands would swell up and hurt but I played handball for years and just assumed the swelling was arthritis. I always told the doctors that I had arthritis and they took me at my word. I was never tested, didn't know they did a test for arthritis. I learned now the biggest mistake is to tell a doctor what you have before they tell you. I was doing his job for him.
We moved in with a friend of Mr. 23. He was in an accident some years before I met him and he got the money from the law suite. He go about ten thousand dollars. He had plans to open a store. Always quick money was on his mind. He cashed the check and they gave him thousand dollar bills and five hundred dollar bills. They are out of circulation now. He showed off the money. He brought himself a new wardrobe and gave me two hundred dollars to buy material for me to make me and the kids clothes with the sewing machine he brought me. I didn't know how to sew. He brought drugs and kept everyone that came around high. His friend was disgusted and told us to leave. His money was short and we found the piece of shit apartment in Jersey City. It was there that I got pregnate with my youngest child. It was our first real home. He started staying out at night and for days. I use to get a welfare check on the first of the month everyone in the town did and there was only one check cashing place. He would take the rent money. No I would give it to him, after he beged for it. He use to say he was going to take the money and flip it, double it. It never happened but I trusted him month after month. When I gave birth he had a party and didn't come to visit me in the hospital. It was then that my feelings started changing for him. My health started changing too. I would get headaches, swelling hands and tired. I guess that was the stress but it still wasn't enough to alarm me. It wasn't until I moved back home with three kids that my symptoms started to really surface.
Wednesday, September 29, 2010
Me Verse Lupus: More of the past to tell.
Me Verse Lupus: More of the past to tell.: "Another day in hell. I am a 50 year old sick unhappy individual. I'm not complaining just stating. I need a good night sleep. I need to l..."
More of the past to tell.
Another day in hell. I am a 50 year old sick unhappy individual. I'm not complaining just stating. I need a good night sleep. I need to let calgon take me away but I can't fit in the tub. I need to get out this house and breath some freedom, but I don't have the energy or money to do so. I have no where to go. I'm not going to do anything as I repeatedly stated, I want to see how the story ends. But why? I know there's something better out there for me, but right now I can't see it. I can't understand why I want to live when living is so hard. It would be so easy to just end it all.
I live with someone who reminds you daily, all day that you are a guest that this is not your home, chair, TV. I should count my blessings she tells me all the time. Why? Because she lets me live here, gives me a roof over my head and food in my belly. I'm thankful I got so sick that I can't work anymore and have someplace to live. Jail! I am always on edge because I don't know what to say, if what I say will cause a negative reaction. I don't know if I should sit or stand, scratch my ass of just hide under the covers. This is from someone who claims to love me. But she doesn't know what love is, she doesn't give into anyone. It's here way or no way. It's her world and be thankful she let you in it. She is so negative that she causes pain to those she claims she care about. You see for her it's hurt before she hurts. So some little mousy bitch like me just hurts and hurts because I can't fight back.
Tequila will help. When I go to the doctor on Friday I'm going to get me a bottle and get drunk.
Okay let me try and get out of the mood before I go upstairs to face my keeper and expose my weakness. Yesterday I told how I met Mr. 23 years. About a week later after talking one the phone night and day. He took me to where he lived, in a hotel. We layed on the bed kissing and feeling on each other when he jumped up and said get undressed. He was skinny, like JJ on Good Times. He had long arms, long legs and under those black silk draws a long dick. I stood in my matching bra and panties, we stood looking at each other for a moment when he said to me, "I'm going to have fun, to turn off the lights." We did everything and more to each other. This was the beginning of a lustful relationship. The next night we spent together was when my daughters' father came and took my daughter for the weekend. My son was so hurt that he didn't take him too. But that's the man he was and is. Mr. 23 years took me and my son out for the day. My baby boy had so much fun running around the city. Hiding between the buildings and seeing all the sights of Manhattan. That night we spent the night in his hotel and slept for the first time together.
I wanted to be with him so bad I moved myself and children into the hotels with him. I was stupid, why would I do something like that. Just to be with a man.
Check out time was at 11 am. We would get dressed the kids and I would go to Bryant park and they would play. He would come get us around 3pm and check us back in the hotel. We would go to the movies, then eat turkey sandwiches. After a while the clerk would let us stay in the room until Mr. 23 made the money for another night stay.
He started teaching me the lessons and I was impressed. I study hard wanting to please him. His friends would come around, they were thugs, but pussy cats to me. His brother had an earth and wife. Both women knew each other and the children knew each other. Mr. 23 always talked about this. But for a least 10 years of our relationship I was all the woman he needed and he was all the man I needed. Now during the day since we didn't have to check out the kids and I would walk to Central Park. We would go to the zoo, it was free back then. We walked around, the kids played in the playgrounds, I sat watching them smoking my reefer and studying my lessons. We would have lunch on the hill above the zoo, it was quiet and not too many people knew about the spot. When we finished we would feed the pigeons. The would gather all around us, hundreds of them, I mean they would eat right out of our hands. Once the monkeys' go loose in the zoo, that was a day we didn't go. Central Park was my park. I loved it and wish I could go walk around it today. But my lungs, ain't happening.
Later we would go back to the hotel. Where pimps, prostitutes, drug dealers, hustlers and transvestites lived. They were characters. Koch was mayor, he hadn't yet started putting families in hotels yet, so we were a rare sight. The pimps use to tell my man he had a goldmine and should put me on the stroll. One night he came home and told me to get dressed that I was going to work. I started getting dress, tears rolling down my face. I couldn't believe he would do this to me. All I could think about was how was I going to get my children and get away from him. After a while he said he was just playing. That he didn't want no one else to have me.
There was this young working girl, her pimp use to rent the room next door to us. He use to beat this girl, he use to slam her against the walls, broke the mirrors and sometimes the windows. We were on the 10th floor and I knew that one night she was going to go out the window. She would have black eyes, broken arms. I couldn't understand why she stayed. My man said she had no where else to go. She ended up getting a new pimp.
There was the transvestite that lived at the other end of the hall. She was short and dark skin. She use to walk up and down the hall cussing in Spanish. Back then they use to give out samples on the street, cigarettes, candy, L. Ron Hubbard's books. Well one day this transvestite knocked on my door and asked me if I wanted some sanitary napkins she got on the street. She said she was finished with her period.
Another character was Sue and her man Slick. She was stereotypical trailer trash. Blond, blue eyes drug addict and Slicks bottom bitch, if he had any other woman. Slick was stereotypical pimp. The wide hat colorful clothes, platform shoes and a black country boy. He didn't talk to me, but talk to Mr. 23 about his "bitches" all the time. Sue had a daughter that was being taken care of by her sister. She wanted to be my girlfriend. She use to come and sit with me and the kids during the day watching the soap operas. I would cook on hot plates and we talked about food. I would put her hair in rollers and help her get ready to go out and work.
There was a pimp that had a real stable of about 6 girls, one had a son. Named Pimp, Pimp was about 4. When his mother got busted Sue was to taking care of him. At night they use to ask me to take care of Pimp. I stopped when he was playing with my kids and told my son, that his sister was the hoe and told her to go and make his money.
Then there was Sandy, she was a man, a big man. Puerto Rican, pretty. She use to show me her new clothes, shoes and look out for me. She wouldn't let anyone in the building fuck with me. My kids knew who the men were, that dressed like women. We told them they were homo's. Sandy use to prostitute, sometimes her johns use to try to rob her. Boy did they get a surprise when she would kick their ass all up and down the hall then take their money. We had a potty in the room so we wouldn't go when working hours began until the morning when all the johns were leaving.
One night there was a fire. Sandy knocked on the door and told me to get the kids out of there. I put my sons' coat on and had him wait, I was putting my daughter coat on when Sandy came in and said hurry up and snatch my son up. My son yelled, "The homos' got me!!" Sandy paid no attention, just took him and put him in the elevator and wouldn't let them move the elevator until me and my daughter got there. By the time the fire department came Sandy and my man put the fire out. Sandy and I stayed cool. She introduced me to her daughter. I was confused, my man explained that his daughter was a guy, that she turned out in jail. Now talking about cute, he/she was gorgeous, you would never know she had a penis.
That was the beginning of our life together. We stayed in hotels in NYC for a year and a half then we moved to a motel in Asbury Park, NJ. His bother and earth lived there also. There was a pool and a private bath. In the city the bathrooms were outside the room. Mr. 23s' brothers' earth taught me how to buy pork free food and products like soap, toothpaste and such. I was cool, she was cool, the kids and our men were cool. Only thing is Mr. 23 and his brother could only get along for a short time before they were ready to kill each other. From there we moved in to one of his friends' apartment in the projects. To be continued.
I live with someone who reminds you daily, all day that you are a guest that this is not your home, chair, TV. I should count my blessings she tells me all the time. Why? Because she lets me live here, gives me a roof over my head and food in my belly. I'm thankful I got so sick that I can't work anymore and have someplace to live. Jail! I am always on edge because I don't know what to say, if what I say will cause a negative reaction. I don't know if I should sit or stand, scratch my ass of just hide under the covers. This is from someone who claims to love me. But she doesn't know what love is, she doesn't give into anyone. It's here way or no way. It's her world and be thankful she let you in it. She is so negative that she causes pain to those she claims she care about. You see for her it's hurt before she hurts. So some little mousy bitch like me just hurts and hurts because I can't fight back.
Tequila will help. When I go to the doctor on Friday I'm going to get me a bottle and get drunk.
Okay let me try and get out of the mood before I go upstairs to face my keeper and expose my weakness. Yesterday I told how I met Mr. 23 years. About a week later after talking one the phone night and day. He took me to where he lived, in a hotel. We layed on the bed kissing and feeling on each other when he jumped up and said get undressed. He was skinny, like JJ on Good Times. He had long arms, long legs and under those black silk draws a long dick. I stood in my matching bra and panties, we stood looking at each other for a moment when he said to me, "I'm going to have fun, to turn off the lights." We did everything and more to each other. This was the beginning of a lustful relationship. The next night we spent together was when my daughters' father came and took my daughter for the weekend. My son was so hurt that he didn't take him too. But that's the man he was and is. Mr. 23 years took me and my son out for the day. My baby boy had so much fun running around the city. Hiding between the buildings and seeing all the sights of Manhattan. That night we spent the night in his hotel and slept for the first time together.
I wanted to be with him so bad I moved myself and children into the hotels with him. I was stupid, why would I do something like that. Just to be with a man.
Check out time was at 11 am. We would get dressed the kids and I would go to Bryant park and they would play. He would come get us around 3pm and check us back in the hotel. We would go to the movies, then eat turkey sandwiches. After a while the clerk would let us stay in the room until Mr. 23 made the money for another night stay.
He started teaching me the lessons and I was impressed. I study hard wanting to please him. His friends would come around, they were thugs, but pussy cats to me. His brother had an earth and wife. Both women knew each other and the children knew each other. Mr. 23 always talked about this. But for a least 10 years of our relationship I was all the woman he needed and he was all the man I needed. Now during the day since we didn't have to check out the kids and I would walk to Central Park. We would go to the zoo, it was free back then. We walked around, the kids played in the playgrounds, I sat watching them smoking my reefer and studying my lessons. We would have lunch on the hill above the zoo, it was quiet and not too many people knew about the spot. When we finished we would feed the pigeons. The would gather all around us, hundreds of them, I mean they would eat right out of our hands. Once the monkeys' go loose in the zoo, that was a day we didn't go. Central Park was my park. I loved it and wish I could go walk around it today. But my lungs, ain't happening.
Later we would go back to the hotel. Where pimps, prostitutes, drug dealers, hustlers and transvestites lived. They were characters. Koch was mayor, he hadn't yet started putting families in hotels yet, so we were a rare sight. The pimps use to tell my man he had a goldmine and should put me on the stroll. One night he came home and told me to get dressed that I was going to work. I started getting dress, tears rolling down my face. I couldn't believe he would do this to me. All I could think about was how was I going to get my children and get away from him. After a while he said he was just playing. That he didn't want no one else to have me.
There was this young working girl, her pimp use to rent the room next door to us. He use to beat this girl, he use to slam her against the walls, broke the mirrors and sometimes the windows. We were on the 10th floor and I knew that one night she was going to go out the window. She would have black eyes, broken arms. I couldn't understand why she stayed. My man said she had no where else to go. She ended up getting a new pimp.
There was the transvestite that lived at the other end of the hall. She was short and dark skin. She use to walk up and down the hall cussing in Spanish. Back then they use to give out samples on the street, cigarettes, candy, L. Ron Hubbard's books. Well one day this transvestite knocked on my door and asked me if I wanted some sanitary napkins she got on the street. She said she was finished with her period.
Another character was Sue and her man Slick. She was stereotypical trailer trash. Blond, blue eyes drug addict and Slicks bottom bitch, if he had any other woman. Slick was stereotypical pimp. The wide hat colorful clothes, platform shoes and a black country boy. He didn't talk to me, but talk to Mr. 23 about his "bitches" all the time. Sue had a daughter that was being taken care of by her sister. She wanted to be my girlfriend. She use to come and sit with me and the kids during the day watching the soap operas. I would cook on hot plates and we talked about food. I would put her hair in rollers and help her get ready to go out and work.
There was a pimp that had a real stable of about 6 girls, one had a son. Named Pimp, Pimp was about 4. When his mother got busted Sue was to taking care of him. At night they use to ask me to take care of Pimp. I stopped when he was playing with my kids and told my son, that his sister was the hoe and told her to go and make his money.
Then there was Sandy, she was a man, a big man. Puerto Rican, pretty. She use to show me her new clothes, shoes and look out for me. She wouldn't let anyone in the building fuck with me. My kids knew who the men were, that dressed like women. We told them they were homo's. Sandy use to prostitute, sometimes her johns use to try to rob her. Boy did they get a surprise when she would kick their ass all up and down the hall then take their money. We had a potty in the room so we wouldn't go when working hours began until the morning when all the johns were leaving.
One night there was a fire. Sandy knocked on the door and told me to get the kids out of there. I put my sons' coat on and had him wait, I was putting my daughter coat on when Sandy came in and said hurry up and snatch my son up. My son yelled, "The homos' got me!!" Sandy paid no attention, just took him and put him in the elevator and wouldn't let them move the elevator until me and my daughter got there. By the time the fire department came Sandy and my man put the fire out. Sandy and I stayed cool. She introduced me to her daughter. I was confused, my man explained that his daughter was a guy, that she turned out in jail. Now talking about cute, he/she was gorgeous, you would never know she had a penis.
That was the beginning of our life together. We stayed in hotels in NYC for a year and a half then we moved to a motel in Asbury Park, NJ. His bother and earth lived there also. There was a pool and a private bath. In the city the bathrooms were outside the room. Mr. 23s' brothers' earth taught me how to buy pork free food and products like soap, toothpaste and such. I was cool, she was cool, the kids and our men were cool. Only thing is Mr. 23 and his brother could only get along for a short time before they were ready to kill each other. From there we moved in to one of his friends' apartment in the projects. To be continued.
Tuesday, September 28, 2010
Me Verse Lupus: My life the vacum
Me Verse Lupus: My life the vacum: "I use to have a life. I had friends that use to call. We would make plans to hang out. One friend was always going back and forth to the do..."
My life the vacum
I use to have a life. I had friends that use to call. We would make plans to hang out. One friend was always going back and forth to the doctors. She would call and tell me all the things that were wrong with her. She would tell me about her job, her boyfriends, kids and she never heard anything I said. But I knew she was a friend now, that I'm sick she doesn't call and her number has changed. I told her daughter to tell her to call. That was in the beginning of the summer and I still haven't heard from her. I have an old friend, we call each other at least once a month. I have another friend who calls and keeps in touch with me on FB. She supports me, she's there for me when I need someone, and she's making plans to spend time with me in December. She lives in another state. I'm looking forward to it and hope I don't be disappointed. I'm home all the time. I don't go anywhere, except to the doctor and maybe shopping. I was looking so forward to going out to lunch with my mate and her friend last week. But that didn't happen and it won't happen. I feel like a prisoner. I spoke to one of my daughters the other night and she said she had nothing to talk about. No one has time for me. Being sick steals your life and gives you nothing. I try to stay busy, writing this blog, where I seem to do nothing but cry all the time. I crochet, work on my family newsletter, create cards. I want to work on my novel but my concentration is for naught, I want to write a poems, but I don't have the skills anymore. There's hardly ever anything good on TV. I can't sleep. Here I go again, my life's a vacum, it sucks. I need some positive energy to zap my ass with a current of enthusiasm. Maybe I should take the cymbalta.I smile when I write about the memories of the past. I cried then during the hard times, but today they were the good old days. Will I get past this sad lonely time. Does anyone care? Should I give a damn if they do or don't?
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