My family
Sunday, October 23, 2011
Me Verse Lupus: Today there is Tomorrow
Me Verse Lupus: Today there is Tomorrow: I know last January I wrote that I was finishing telling my story. I stopped writing my blog like that was the end of my story when it real...
Today there is Tomorrow
I know last January I wrote that I was finishing telling my story. I stopped writing my blog like that was the end of my story when it really was the beginning. Ever see the weight watchers commercial with Jennifer Um.. the fog, but you know, "It's a new day, a new life a new me." Well that's me today.
I saw lupus as a thief in the night, crawling in the dark creases of my mind and body stealing the me that I was...ha! am. Not knowing that I was giving myself away for free. I gave up who I was to be this helpless, sick, depressed, sad and lonely woman. Full of regret about the life I lived, the mistakes I made. I crawled into an abyss if darkness, wandering loss inside myself. I couldn't come to terms with what life has given me; this present wasn't a gift, not this lupus that turned me inside out, upside down and all around. I was so angry, frustrated blinded by rage. Disappointed.
My life was/is like an ocean without fish, a sky without birds, a sun that won’t shine, a land without foot prints, and a moon lost in an abyss of darkness. What a master thief depression is.
I was laying in bed this morning, debating if I should get up and take my medication or just lay here and try to go back to sleep. But that crazy question that has no answer continued to haunt me this morning. What is the meaning of this life I’m living? I can’t figure out what my reason for being is. I wonder if I’m living or existing. My days feel empty to me, yet I bask in my solitude it makes as much sense as the life I live. I’m doing what I must do to wake each day, take meds, sleep, eat and shit. I go visit doctors to analyze my health; I go to the physical therapy/rehab. I spend hours on Facebook, peeking into other people’s lives and playing a game that has no real purpose.
Life once made sense, or maybe I thought it did. As a child there were so many possibilities, dreams and hopes that could come true. And time was plentiful; my whole life was ahead of me. Then life was lived and those possibilities started to look impossible, impossible because I didn’t want to work at making it possible. So I dreamed of what I could have worked at making come true. Today my dreams look impossible, I’m 51 but older because my body abandoned me, it’s fighting me, punishing me if you will. I was blessed with beauty, I was smart, I was fairly healthy and what did I do? That’s right nothing!
People like to say you can measure your success by what you have. I have a place to sleep, food to eat. I have three children who are surviving in life, three beautiful grandchildren. I made a decent living that afforded me a decent SSD check once a month. Should I be satisfied with that? No I want more, I believe I deserve more. I don’t want fame and riches though it would be nice. I want happiness. My children and their children give me moments of happiness, but it’s not enough. I want to feel mentally good all the time, after all my body is constantly hurting me, I am always on the verge of tears.
Yes I turn to God and I ask for forgiveness to the wrongs I’ve done in life, I ask for my children to be happy and I ask for help to see what my purpose is. I continue to be confused, to feel lost and alone. I know as long as God is in my life I am never alone. But I am human, I need, I want and demand human approval, touch, praise and companionship. I have so much locked inside me I don’t know how to let it out, to release the frustration, the hurt and loneliness I feel.
When I was younger I use to hope for…and when I obtained, I believe I was lucky. Now that I’m older, I pray for… and when I obtain, I know that I am blessed. I am thankful to God for He is the master of all and He makes all things possible.
I still have no answers. I still don't have a purpose, but today I don't care, today I have a peace. What will, may be and I will be as I may. I have lupus and I'm not going to continue to allow it to consume me, I'm not dead, I have breath in my lungs, a mind that thinks, legs that walk and a heart that beats with life. There is tomorrow all I have to do is wake up.
Monday, January 31, 2011
Me Verse Lupus: The end of my story
Me Verse Lupus: The end of my story: "I am still battling this fatigue. I went to my daughters early Saturday morning. I was there by 8am because she had to work. My ..."
The end of my story
I am still battling this fatigue. I went to my daughters early Saturday morning. I was there by 8am because she had to work. My son was coming with an escort from the rehab to get his clothes and stuff. My daughters' father was suppose to be going out. When I arrived, remember what time I told you it was, her father just woke up and was drinking, not orange juice, brandy. He was okay for an hour or so. My son called and said he would be there soon. I asked the father to move his empty bottle, he gets all nasty it's empty. Empty or not it puts the idea there. So my son comes everything is fine he and the escort eat and hang for a little bit then leave. My daughters' friend was there and when they live she asks me where my son was going, I tell her to rehab and that the guy was an escort. I say to my daughters' father that's why I asked you to move the bottle. He gets nasty and says, I did, but it was empty and I live here. I got so pissed I went into the bathroom to keep from saying. "Mother fucker, this is my daughters' place and that is her brother she cares about. I didn't ask you to stop drinking I just ask you to put move the bottle." I didn't want to further go off and say, " You don't pay rent, you live off my daughter you spent a couple of thousand dollars on a computer and desk and took the chair my daughter brought for her computer desk to use. You got a check last year to baby sit the kids, this year you don't babysit, maybe once and a while you take them to school. My daughter wanted to go to school and she worked around your schedule but you went and changed yours so you wouldn't have to baby sit. And your ass is still getting a check from public assistance for babysitting. And you don't give my daughter, your child any money. You use the electricity and cable line. You never paid me any child support at all. You are a selfish son of a bitch. This is why you are a drunk because you are unhappy no one wants to be around you too long. You're a freak." But I didn't say any of this because I don't like to make waves. But at least I got it out on this blog. And it felt good.
I got home about 8pm that night. I was tired and I had to go to the rehab to do a family visit with my son. My mate wasn't feeling well, she ate an old tangerine and her stomach was upset, but not only that she was having pains in her left arm. In the morning her arm was still hurting, she was up most of the night in the bathroom, so she wanted to go to the ER. Imagine going to the ER with someone and not for myself. I call the rehab and tell them I can't make it. We sit in the rehab for a few hours and everything is fine and we come back home.
Tomorrow I'm suppose to meet this woman to help me with the medicare. It's suppose to snow again, another major storm. I don't know, I think I should reschedule, I don't want to get into Manhattan and get stuck. The problem is the womans' phone only takes messages and she only comes in on Tuesdays. something so minor as this stresses me out.
I'm almost caught up to this day with my life. I mentioned though out my story how mean my mate is. Don't get me wrong, she has a kind nature about her. She is considerate of my well being. She will do what ever she can to make me comfortable, as long as it doesn't inconvenience her. She doesn't care what she says or how it hurts. She knows that I'm sensitive, but she will say things to hurt me. If I point out a flaw of hers', she will do a tic for tack thing. She gets defensive and tells me what my flaws are. Let me tell you I have hundreds. I talk too much, I don't remember to put things away. I sort my pills and sometimes they fall to the floor. Sometimes I can't find them, she tells me I don't look. She doesn't understand that I can't remember things. She tells me I'm lazy because I can sit at the computer but can't sweep the floor or something. The list can go on and on and on. I spend a lot of time crying, but that's me. To be honest the only person I expressed myself to freely and who understood me was Mr. 23 years, but he couldn't make me happy he had his negative ways. I guess I was meant to be alone like my mother. I don't know what kind of person I want in my life. Maybe it's me, like my brother said. I'm a fuck up.
My mate, when we first met she would buy me gifts, pocketbooks, jewelry and take me out to eat. She buys me clothes still but she gets me men's clothes because that's what she wears. I don't want a mens' jacket. She made promises when we met, but it ain't no different then a man who tries to woo you. She said she would take me on a cruise and it hasn't happened. She still talks about it but I won't hold my breath. She doesn't even take me out locally. I only have her winter and spring concerts to look forward. I enjoy myself but it's not like going to a play or even a movie. We use to go out to eat, but now I should be happy to get a whopper when she comes in from the bar. Where she is if she doesn't have rehearsal. I am left alone so often, but it's not like I live alone because I am really nothing more then a guest. She will tell someone quickly that I'm her lover but I have no rights in the place I live. This is what hurts me the most. Being homeless. She's mellowed out a bit but I still have to remember to put everything away. I write and I like to have my papers around me but I can't I have to put them away and I end up hiding them a losing them because I can't remember where I put them.
She will encourage me to lose weight but turn around and fix me something to eat and pile the food on my plate, no matter how much I tell her not a lot. I like that she tries to take care of me but in the next breath she'll cuss me out. I say she's bi-polar and needs medication.
She has no interest in marriage. I don't want to marry a woman, but her stand is that she doesn't believe in marriage because of the community property thing. Her philosophy is what's mine is mine and what's yours is yours. I live here and her mother and her will say that's your potatoes or juice or what ever. We share food and drink, but saying that's yours makes me think twice about eating or touching different foods or things.
I don't know, I grew up in a household where we respected each other and ;listened to each other. I raised my children in a house hold that may have been dysfunctional but we respected each other. I'm living now in a household that everyone yells when they talk and are cold and harsh and sarcastic when they speak. I try to stand on my own feet but I'm not a fighter so I get stressed and nervous. I live my life on the computer, I get lost in my television shows, books or I go to sleep and try to dream a better life. This was my story.
This blog has ended I will start another blog soon. It will deal totally with lupus. I hope to write about my trails in a way that it will educate those who are struggling through this disease and for those who have family or friends with lupus. I hope to write a piece worthy of publication.
Until them my readers God bless.
This is a picture of Mr. 23 & me.
I got home about 8pm that night. I was tired and I had to go to the rehab to do a family visit with my son. My mate wasn't feeling well, she ate an old tangerine and her stomach was upset, but not only that she was having pains in her left arm. In the morning her arm was still hurting, she was up most of the night in the bathroom, so she wanted to go to the ER. Imagine going to the ER with someone and not for myself. I call the rehab and tell them I can't make it. We sit in the rehab for a few hours and everything is fine and we come back home.
Tomorrow I'm suppose to meet this woman to help me with the medicare. It's suppose to snow again, another major storm. I don't know, I think I should reschedule, I don't want to get into Manhattan and get stuck. The problem is the womans' phone only takes messages and she only comes in on Tuesdays. something so minor as this stresses me out.
I'm almost caught up to this day with my life. I mentioned though out my story how mean my mate is. Don't get me wrong, she has a kind nature about her. She is considerate of my well being. She will do what ever she can to make me comfortable, as long as it doesn't inconvenience her. She doesn't care what she says or how it hurts. She knows that I'm sensitive, but she will say things to hurt me. If I point out a flaw of hers', she will do a tic for tack thing. She gets defensive and tells me what my flaws are. Let me tell you I have hundreds. I talk too much, I don't remember to put things away. I sort my pills and sometimes they fall to the floor. Sometimes I can't find them, she tells me I don't look. She doesn't understand that I can't remember things. She tells me I'm lazy because I can sit at the computer but can't sweep the floor or something. The list can go on and on and on. I spend a lot of time crying, but that's me. To be honest the only person I expressed myself to freely and who understood me was Mr. 23 years, but he couldn't make me happy he had his negative ways. I guess I was meant to be alone like my mother. I don't know what kind of person I want in my life. Maybe it's me, like my brother said. I'm a fuck up.
My mate, when we first met she would buy me gifts, pocketbooks, jewelry and take me out to eat. She buys me clothes still but she gets me men's clothes because that's what she wears. I don't want a mens' jacket. She made promises when we met, but it ain't no different then a man who tries to woo you. She said she would take me on a cruise and it hasn't happened. She still talks about it but I won't hold my breath. She doesn't even take me out locally. I only have her winter and spring concerts to look forward. I enjoy myself but it's not like going to a play or even a movie. We use to go out to eat, but now I should be happy to get a whopper when she comes in from the bar. Where she is if she doesn't have rehearsal. I am left alone so often, but it's not like I live alone because I am really nothing more then a guest. She will tell someone quickly that I'm her lover but I have no rights in the place I live. This is what hurts me the most. Being homeless. She's mellowed out a bit but I still have to remember to put everything away. I write and I like to have my papers around me but I can't I have to put them away and I end up hiding them a losing them because I can't remember where I put them.
She will encourage me to lose weight but turn around and fix me something to eat and pile the food on my plate, no matter how much I tell her not a lot. I like that she tries to take care of me but in the next breath she'll cuss me out. I say she's bi-polar and needs medication.
She has no interest in marriage. I don't want to marry a woman, but her stand is that she doesn't believe in marriage because of the community property thing. Her philosophy is what's mine is mine and what's yours is yours. I live here and her mother and her will say that's your potatoes or juice or what ever. We share food and drink, but saying that's yours makes me think twice about eating or touching different foods or things.
I don't know, I grew up in a household where we respected each other and ;listened to each other. I raised my children in a house hold that may have been dysfunctional but we respected each other. I'm living now in a household that everyone yells when they talk and are cold and harsh and sarcastic when they speak. I try to stand on my own feet but I'm not a fighter so I get stressed and nervous. I live my life on the computer, I get lost in my television shows, books or I go to sleep and try to dream a better life. This was my story.
This blog has ended I will start another blog soon. It will deal totally with lupus. I hope to write about my trails in a way that it will educate those who are struggling through this disease and for those who have family or friends with lupus. I hope to write a piece worthy of publication.
Until them my readers God bless.
This is a picture of Mr. 23 & me.
Tuesday, January 25, 2011
Me Verse Lupus: My life almost caught up
Me Verse Lupus: My life almost caught up: "I'm up and ready to go. I'm doing a lot and have a lot to do. Haha! I'm reading 'The Immortal Life Of Henrietta Lacks-By Rebecca..."
My life almost caught up
I'm up and ready to go. I'm doing a lot and have a lot to do. Haha! I'm reading "The Immortal Life Of Henrietta Lacks-By Rebecca Skloot" Very interesting, it has to do with biology, well it also tells the story of Henrietta and her family. John Hopkins used and sold her cells since the 1950s' they made many medical break troughs and tested the effects of many drugs on these cells. Many of the doctors and scientist were getting rich while the family, up to this day is living in poverty. It's an amazing story. That's enough of my book review. My writer’s digest magazine came in and I love them so much the only magazine I read from cover to cover. I have to sort my medication, yes that's a task and that's like number one on my to due list. I have 3 birthday cards to do and I want to make some Valentine cards and see if my mate will sell them at the bar. I also need to work on my family newsletter. Now that I wrote what I have to do, it's not so much, but for me it is.
I spoke to my grandchildren over the weekend and my daughters. I was feeling like they were ignoring me, but they've been busy. They said when their day’s end, they know I'm in bed so they don't want to disturb me. Awww! Bull shit! My youngest daughter is on twitter all day and I see her pop on FB so she can take a minute and send me a text. My oldest daughter can send me a text too. I don't have to get up an read it at night but at least I know they were thinking about me.
I'm down 17 pounds that puts me under the 300 pound mark!! Whoopee! I told my mate and her response, oh good you would lose a lot faster if you stop eating all the junk food. She brought ring dings and baby Ruth's in here. I tried to maintain will power but damn it ain't easy. Her mother brought cookies I ate 3. The other night I ate a cup of sherbet. That's the junk I ate. I've been eating two meals a day sometimes one. I eat my lightly salted chips and pistachios'. I'm not on a strict eating only salad, fruits and vegetables. I'm cutting down what I eat. Denying myself foods doesn't work for me, this is working, I eat what I want but in moderation. What I need to do is get back on that stationary bike and excersie every other day and then I will lose a bit faster. So I'm proud of myself and if my children get me or help me get the health master I will lose a lot faster, I like juicing, it just too much work with the juicer.
I started telling how I met C (her). Let me just tell the last bit of Mr. 23 he was smoking that PCP, he takes everything to the extreme. He was outside in front of the house doing Karate with the cars as they passed through the street. He wouldn't listen to any of us that told him to come in. No one wanted to call 911 and have him admitted. I finally did. He cursed me out when he was being taken, threaten to kill me. Shortly after he was admitted the doctor called and said he's fine and we are discharging him. I said to the doctor he threatened to kill me when he gets out. Docs said call him and see how he sounds. I called him and on the top of his lungs he started screaming, "Bitch when I get out here I'm going to kill you!" He kept on calling me all kinds of negative words and cursing the doctors, hospital, police everyone. When I called the doctor back as soon as I said my name the doctor said, 'we're keeping him'. This was the real turning point.
So C would call me and we would talk for hours. She promised to take me on a cruise and take me on trips. I was so excited, I was working I had my own money but couldn't afford to go anywhere because of that monster of a house. She said she wanted to take care of me. I told her that I was having financial troubles with the house and she suggested I refinance and introduced me to this guy who did refinancing. The guy said he couldn't help me refinance but could help me sell it. So that's what I did. While we negotiate with the buyers I was packing and cleaning the house out. That was the most touching and hurting time in my life. I was letting go of an error, my childhood and the life I had with Mr. 23. I told him I was going to live on my own. I told him if he wanted me he could get us a place to live.
I got less then 20k for the house. I put my stuff in storage, when the buyer came we had our few suitcases, I had mine, Mr. 23 had his and my daughter, her boyfriend and my grandson had theirs. We called cabs; my daughter and her family got in theirs' and went into the shelter system. Mr. 23 and I went to my daughters' house. He helped me with my bags and we hugged, I had tears in my eyes and I felt him wiping his eyes, my life with 23 years was over, all the good times, hard times and bad times.
I was staying with my daughter and her man. Her man did everything he could to make me uncomfortable so I went and stayed with C. We both would go to work in the morning and meet at the bar after. We would drink, she brought me coke and I would sniff. I was enjoying my life. After a while she retired and now she was home and I was at work during the day. I was trying to hang out with her. I was doing my job but I wasn't paying attention. I hired this woman for marketing and she wanted my position. She told my boss I was late and not doing my work. This wasn't true but I got a months' severance pay, money that was due to me as a bonus and a promise of unemployment. I was looking for a job and couldn't find one; finally I got another job in a homecare agency. It was run different than the one I was working for. I was a supervisor, now I was a coordinator, a demotion. They had an on-call system that was bad. No case could be left uncovered. The on-call pager would ring non-stop and to save money there was only one on-call person who had to cover all the cases across the city and long island that was a lot. The first week-end I did the on-call I worked almost 18 hours, that Monday I went in a gave them the on-call stuff, my letter or resignation and left. It was not for me. So I was unemployed again.
Back then the unemployment ran out in six months and when it did I worked off the books taking care of this 92 year old lady and living off the little money left from the sale of my house, which ran out quickly. C started to change; she had a part time job as security down at ground zero. When the Duercht building caught on fire she left her post and went home and got fired. Her money was short and she stopped spoiling me. I was use to paying my own way.
I was having a hard time with the storage bill. I should have asked my brother to take the pictures and some of the mementos I had like the cards I saved from my mother, my old writings and journals and Stefannie my doll I got when my sister was born. Those are the things that I still cry over losing when I missed a payment. I called and asked the manager if I could send a check in a few days late and he agreed but another manger didn't get the word and sent my check back saying they sold my stuff and wouldn't tell me to whom they sold it to.
I got a job at another home care agency; this one belonged to a friend of mine. I was always tired and I was trying to help them find a better system to do the time sheets. They were moving into the Empire State Building and I knew the rent was going to be high. I was let go. I went back to taking care of the old lady and took a bookkeeping class. Mr. 23 use to meet me by the old lady’s' house and we would talk; he would ask me for money or sometimes give me a few dollars. My friend told me he got married, I was seeing him and he didn't tell me he was going to get married. A week later he met me and I was so hurt. Over the years I wanted to get married he didn't when he changed his mind and wanted to I told him how to get his state id, he never did. He told me he got married because this woman wouldn't let him live with her unless he married her. He told me, get this a week after he got married, he could get a divorce. He told me I'm the only woman he loves and the only one that knows him. It's true we know each other better than anyone knows is. But he ended our relationship for ever. I would never go back to him at all now. It's really over.
After while I got a job with Manpower at the post office. I was making nice money, lots of over time. Things were good financially, I was able to help my children, C was happy. I was going to the bar to meet her and buying drinks again and buying my own cocaine. Then I needed a hysterectomy, I had that done in the summer of 2007, it took eight weeks for me to recover and I went back to work at the Post Office. A woman who had a hysterectomy 6 months earlier was talking about how well she felt and told me I was going to feel much better soon. But I wasn't, I was getting tired and tired. C brought a car from a friend, the car was full of mold and the driver’s side window didn't open. I was driving that car and smoking. I was happy not to have to take the bus. When the spring came again I would go out and smoke in the sun. I don't know why I wanted to get a suntan that year, but I would go stand outside smoking, I stopped using sunscreen. I could have went and smoked on the other side of the building where there was shade. But I wanted that suntan.
I would go every two weeks to have my nails done and get my eyebrows waxed. I would still go meet C after work. But I was getting too tired; I would go straight home and go to bed. Soon I stopped going to get my nails done, I was just too tired. I found myself exhausted when I went up and down the stairs I couldn't breathe. I would have to sit and catch my breath. I didn't have health insurance and didn't want to go to the ER.
It was my oldest grandsons' birthday, we went to the Brooklyn Aquarium, and we were in the sun all day, me without sunscreen. I was so exhausted, weak even. I went home and the next day I went to work. I couldn't walk down the hall without getting winded. My supervisor told me I need to get my breathing check. Everyone was telling me I didn't sound good. For the past few weeks I would sit at my desk, I was in an office in the back by myself and I would sit in front of the computer and doze off. I had no control. I never felt this tired before.
So this day everyone was telling me how bad my breathing sound I decided to go the city hospital. I was admitted and was hospitalized for five days. I had COPD and SLE lupus.
I spoke to my grandchildren over the weekend and my daughters. I was feeling like they were ignoring me, but they've been busy. They said when their day’s end, they know I'm in bed so they don't want to disturb me. Awww! Bull shit! My youngest daughter is on twitter all day and I see her pop on FB so she can take a minute and send me a text. My oldest daughter can send me a text too. I don't have to get up an read it at night but at least I know they were thinking about me.
I'm down 17 pounds that puts me under the 300 pound mark!! Whoopee! I told my mate and her response, oh good you would lose a lot faster if you stop eating all the junk food. She brought ring dings and baby Ruth's in here. I tried to maintain will power but damn it ain't easy. Her mother brought cookies I ate 3. The other night I ate a cup of sherbet. That's the junk I ate. I've been eating two meals a day sometimes one. I eat my lightly salted chips and pistachios'. I'm not on a strict eating only salad, fruits and vegetables. I'm cutting down what I eat. Denying myself foods doesn't work for me, this is working, I eat what I want but in moderation. What I need to do is get back on that stationary bike and excersie every other day and then I will lose a bit faster. So I'm proud of myself and if my children get me or help me get the health master I will lose a lot faster, I like juicing, it just too much work with the juicer.
I started telling how I met C (her). Let me just tell the last bit of Mr. 23 he was smoking that PCP, he takes everything to the extreme. He was outside in front of the house doing Karate with the cars as they passed through the street. He wouldn't listen to any of us that told him to come in. No one wanted to call 911 and have him admitted. I finally did. He cursed me out when he was being taken, threaten to kill me. Shortly after he was admitted the doctor called and said he's fine and we are discharging him. I said to the doctor he threatened to kill me when he gets out. Docs said call him and see how he sounds. I called him and on the top of his lungs he started screaming, "Bitch when I get out here I'm going to kill you!" He kept on calling me all kinds of negative words and cursing the doctors, hospital, police everyone. When I called the doctor back as soon as I said my name the doctor said, 'we're keeping him'. This was the real turning point.
So C would call me and we would talk for hours. She promised to take me on a cruise and take me on trips. I was so excited, I was working I had my own money but couldn't afford to go anywhere because of that monster of a house. She said she wanted to take care of me. I told her that I was having financial troubles with the house and she suggested I refinance and introduced me to this guy who did refinancing. The guy said he couldn't help me refinance but could help me sell it. So that's what I did. While we negotiate with the buyers I was packing and cleaning the house out. That was the most touching and hurting time in my life. I was letting go of an error, my childhood and the life I had with Mr. 23. I told him I was going to live on my own. I told him if he wanted me he could get us a place to live.
I got less then 20k for the house. I put my stuff in storage, when the buyer came we had our few suitcases, I had mine, Mr. 23 had his and my daughter, her boyfriend and my grandson had theirs. We called cabs; my daughter and her family got in theirs' and went into the shelter system. Mr. 23 and I went to my daughters' house. He helped me with my bags and we hugged, I had tears in my eyes and I felt him wiping his eyes, my life with 23 years was over, all the good times, hard times and bad times.
I was staying with my daughter and her man. Her man did everything he could to make me uncomfortable so I went and stayed with C. We both would go to work in the morning and meet at the bar after. We would drink, she brought me coke and I would sniff. I was enjoying my life. After a while she retired and now she was home and I was at work during the day. I was trying to hang out with her. I was doing my job but I wasn't paying attention. I hired this woman for marketing and she wanted my position. She told my boss I was late and not doing my work. This wasn't true but I got a months' severance pay, money that was due to me as a bonus and a promise of unemployment. I was looking for a job and couldn't find one; finally I got another job in a homecare agency. It was run different than the one I was working for. I was a supervisor, now I was a coordinator, a demotion. They had an on-call system that was bad. No case could be left uncovered. The on-call pager would ring non-stop and to save money there was only one on-call person who had to cover all the cases across the city and long island that was a lot. The first week-end I did the on-call I worked almost 18 hours, that Monday I went in a gave them the on-call stuff, my letter or resignation and left. It was not for me. So I was unemployed again.
Back then the unemployment ran out in six months and when it did I worked off the books taking care of this 92 year old lady and living off the little money left from the sale of my house, which ran out quickly. C started to change; she had a part time job as security down at ground zero. When the Duercht building caught on fire she left her post and went home and got fired. Her money was short and she stopped spoiling me. I was use to paying my own way.
I was having a hard time with the storage bill. I should have asked my brother to take the pictures and some of the mementos I had like the cards I saved from my mother, my old writings and journals and Stefannie my doll I got when my sister was born. Those are the things that I still cry over losing when I missed a payment. I called and asked the manager if I could send a check in a few days late and he agreed but another manger didn't get the word and sent my check back saying they sold my stuff and wouldn't tell me to whom they sold it to.
I got a job at another home care agency; this one belonged to a friend of mine. I was always tired and I was trying to help them find a better system to do the time sheets. They were moving into the Empire State Building and I knew the rent was going to be high. I was let go. I went back to taking care of the old lady and took a bookkeeping class. Mr. 23 use to meet me by the old lady’s' house and we would talk; he would ask me for money or sometimes give me a few dollars. My friend told me he got married, I was seeing him and he didn't tell me he was going to get married. A week later he met me and I was so hurt. Over the years I wanted to get married he didn't when he changed his mind and wanted to I told him how to get his state id, he never did. He told me he got married because this woman wouldn't let him live with her unless he married her. He told me, get this a week after he got married, he could get a divorce. He told me I'm the only woman he loves and the only one that knows him. It's true we know each other better than anyone knows is. But he ended our relationship for ever. I would never go back to him at all now. It's really over.
After while I got a job with Manpower at the post office. I was making nice money, lots of over time. Things were good financially, I was able to help my children, C was happy. I was going to the bar to meet her and buying drinks again and buying my own cocaine. Then I needed a hysterectomy, I had that done in the summer of 2007, it took eight weeks for me to recover and I went back to work at the Post Office. A woman who had a hysterectomy 6 months earlier was talking about how well she felt and told me I was going to feel much better soon. But I wasn't, I was getting tired and tired. C brought a car from a friend, the car was full of mold and the driver’s side window didn't open. I was driving that car and smoking. I was happy not to have to take the bus. When the spring came again I would go out and smoke in the sun. I don't know why I wanted to get a suntan that year, but I would go stand outside smoking, I stopped using sunscreen. I could have went and smoked on the other side of the building where there was shade. But I wanted that suntan.
I would go every two weeks to have my nails done and get my eyebrows waxed. I would still go meet C after work. But I was getting too tired; I would go straight home and go to bed. Soon I stopped going to get my nails done, I was just too tired. I found myself exhausted when I went up and down the stairs I couldn't breathe. I would have to sit and catch my breath. I didn't have health insurance and didn't want to go to the ER.
It was my oldest grandsons' birthday, we went to the Brooklyn Aquarium, and we were in the sun all day, me without sunscreen. I was so exhausted, weak even. I went home and the next day I went to work. I couldn't walk down the hall without getting winded. My supervisor told me I need to get my breathing check. Everyone was telling me I didn't sound good. For the past few weeks I would sit at my desk, I was in an office in the back by myself and I would sit in front of the computer and doze off. I had no control. I never felt this tired before.
So this day everyone was telling me how bad my breathing sound I decided to go the city hospital. I was admitted and was hospitalized for five days. I had COPD and SLE lupus.
Friday, January 21, 2011
Me Verse Lupus: My life turns around once again
Me Verse Lupus: My life turns around once again: "I'm getting in this funk. I'm wondering what is my purpose, is it to be on this computer all day going back and forth from FB, writerscafe, ..."
My life turns around once again
I'm getting in this funk. I'm wondering what is my purpose, is it to be on this computer all day going back and forth from FB, writerscafe, the support group that I don't want to participate in any more because of the ugly vibe there. I go on twitter but I can't keep up and no one really talks to me. My children don't call and I try not to bother them. My mate has no time for me and basically doesn't want to be bothered. I know I went through this before and it's getting old. I wish I could write, but I can't stay focused. My mind is worrying about this medicare I wish there was someone that could help me. Someone gave me a program that helps with prescription drugs but the address was wrong so if that person is still reading will you please send it again.
Yesterday I needed one of my medications for the afternoon. I got dressed and called the guy that drives me around, he said he would be here to pick me up in less then a half hour. 45 minutes later he still wasn't here. I called and he said he forgot and was on his way. He was like ten minutes away from where he said he was. I waited another 15 minutes so I went to get change and told him if he didn't arrive in the next 2 minutes I was taking the bus. I waited 5 minuted he didn't show, I took the bus, got my meds walked a block to the supermarket, called another guy that drives cabs, got what I needed and when I got out side the store in less then five minutes the guy shows up. I'm less then a minute from home when the guy who stood me up calls and asks where I am. I told him I was on my way home and he insisted to know where I was. The guy who did picked me up I stopped using him because he charges too much yesterday he only took $5 were he would of originally took $7. Greediness, I have a trick for them, I can get around by myself. I could of walked back to the bus stop and got home for a dollar and ten cents and if need be I will do it next time. I just have to do it. Yay for me!
My children were grown. My son in jail, step son on his own, my girls with their men and babies. Just me and Mr. 23 years. Me working and trying to keep the house going but I just couldn't afford it. The bathroom was falling apart because the upgrade work was poorly done, the bathroom leaked down into the kitchen. I was cooking on hot plates and using a George Foremans' oven to bake with. I was fixing some good meals with my makeshift kitchen.
We were struggling, the boiler was makeshift it was dangerous, Mr. 23 kept it working but it could have exploded. We would run out of oil often and spend the night sleeping in our clothes, with our coats and several blankets on top of us and a heaters on. Mr. 23 would make a few dollars and put diesel gas in the boiler tank. Rats were all through the house. We had poison down and traps but they wouldn't go away. The guy we had rented the attic to had brought in a billion roaches, after he left we tried to bomb them and get rid of them but they just multiplied. It was sad living like this and I couldn't do anything because I had no finicial help. My youngest daughter, her man and baby were living in the house. Mr. 23s' artist friends sister was staying with us. If everyone just helped a little life would of been better.
I was going to work everyday. I worked in different offices everyday, I was a supervisor of three branches so some days I would go to the Queens branch, I would take the train but after while going up and down the subway stairs was a bit much so I started taking the bus. I worked in the Brooklyn branch I had no choice but to take the subway, there were a lot of stairs to go up to get above ground, there were elevators in that station only sometimes they didn't work. I also worked in the Bronx, that was almost a two hour ride from Queens by bus. It was traveling on the bus to the Bronx and Queens office that I met her. She started talking to me about the Knicks and what was going on in the news. She invited me to the bar she hung out at, I finally went. Mr.23 was always out, my friend was doing her thing like she always does. So I was lonely like I am now because I'm not a real social person. So I went to the bar.
I was sitting at the bar when she walked in. She made a grand entrance when someone asked her where she was coming from she said, "some people got to work for a living." Then she noticed me and a big smile came across her face. She sat with me brought me a drink and we talked. She brought me some coke, flowers and I think she brought some food. The bar got crowded and everyone was trying to talk to me and I got a lot of attention. I liked it and I would met her again and again. When we decided to sleep together I called in sick from work and went to her house. She was so attentive and made promises just like men do. Just the same as men once they get you they forget the promises they made to you. As normal I got caught up in the excitement of the new relationship, the attention. I would take days off of work and we would go to a hotel. We went to Atlantic City and stayed in a motel. I took us to a play and on a boat ride. She promised to take me on a cruise and it never happened and probably won't. We use to go out to eat, she took me shopping for clothes. She did all the things to make me feel special. and then...to be continued.
Yesterday I needed one of my medications for the afternoon. I got dressed and called the guy that drives me around, he said he would be here to pick me up in less then a half hour. 45 minutes later he still wasn't here. I called and he said he forgot and was on his way. He was like ten minutes away from where he said he was. I waited another 15 minutes so I went to get change and told him if he didn't arrive in the next 2 minutes I was taking the bus. I waited 5 minuted he didn't show, I took the bus, got my meds walked a block to the supermarket, called another guy that drives cabs, got what I needed and when I got out side the store in less then five minutes the guy shows up. I'm less then a minute from home when the guy who stood me up calls and asks where I am. I told him I was on my way home and he insisted to know where I was. The guy who did picked me up I stopped using him because he charges too much yesterday he only took $5 were he would of originally took $7. Greediness, I have a trick for them, I can get around by myself. I could of walked back to the bus stop and got home for a dollar and ten cents and if need be I will do it next time. I just have to do it. Yay for me!
My children were grown. My son in jail, step son on his own, my girls with their men and babies. Just me and Mr. 23 years. Me working and trying to keep the house going but I just couldn't afford it. The bathroom was falling apart because the upgrade work was poorly done, the bathroom leaked down into the kitchen. I was cooking on hot plates and using a George Foremans' oven to bake with. I was fixing some good meals with my makeshift kitchen.
We were struggling, the boiler was makeshift it was dangerous, Mr. 23 kept it working but it could have exploded. We would run out of oil often and spend the night sleeping in our clothes, with our coats and several blankets on top of us and a heaters on. Mr. 23 would make a few dollars and put diesel gas in the boiler tank. Rats were all through the house. We had poison down and traps but they wouldn't go away. The guy we had rented the attic to had brought in a billion roaches, after he left we tried to bomb them and get rid of them but they just multiplied. It was sad living like this and I couldn't do anything because I had no finicial help. My youngest daughter, her man and baby were living in the house. Mr. 23s' artist friends sister was staying with us. If everyone just helped a little life would of been better.
I was going to work everyday. I worked in different offices everyday, I was a supervisor of three branches so some days I would go to the Queens branch, I would take the train but after while going up and down the subway stairs was a bit much so I started taking the bus. I worked in the Brooklyn branch I had no choice but to take the subway, there were a lot of stairs to go up to get above ground, there were elevators in that station only sometimes they didn't work. I also worked in the Bronx, that was almost a two hour ride from Queens by bus. It was traveling on the bus to the Bronx and Queens office that I met her. She started talking to me about the Knicks and what was going on in the news. She invited me to the bar she hung out at, I finally went. Mr.23 was always out, my friend was doing her thing like she always does. So I was lonely like I am now because I'm not a real social person. So I went to the bar.
I was sitting at the bar when she walked in. She made a grand entrance when someone asked her where she was coming from she said, "some people got to work for a living." Then she noticed me and a big smile came across her face. She sat with me brought me a drink and we talked. She brought me some coke, flowers and I think she brought some food. The bar got crowded and everyone was trying to talk to me and I got a lot of attention. I liked it and I would met her again and again. When we decided to sleep together I called in sick from work and went to her house. She was so attentive and made promises just like men do. Just the same as men once they get you they forget the promises they made to you. As normal I got caught up in the excitement of the new relationship, the attention. I would take days off of work and we would go to a hotel. We went to Atlantic City and stayed in a motel. I took us to a play and on a boat ride. She promised to take me on a cruise and it never happened and probably won't. We use to go out to eat, she took me shopping for clothes. She did all the things to make me feel special. and then...to be continued.
Sunday, January 16, 2011
Me Verse Lupus: Trying to gather enough spoons for the day
Me Verse Lupus: Trying to gather enough spoons for the day: "I was laying in the bed this morning trying to accumulate enough spoons to help me get through this day. The phone rang early, while I..."
Trying to gather enough spoons for the day
I was laying in the bed this morning trying to accumulate enough spoons to help me get through this day. The phone rang early, while I was in a good sleep. My mates' family gets up early and thinks the whole world is up too. I remember when I was a teenager my family and friends knew not to wake me in the morning because I was evil. I always hated to be waken up when I didn't have to go out or do anything that day. When I was raising my children I got better because I had to get up and take care of my kids, but now I'm back to feeling evil as hell when I'm awaken when I don't need to get up. My mate gets up puts on the TV, turns on lights, talks to me as I'm laying in that twilight zone, she'll start cleaning, washing clothes. I have no choice but to get up and just deal with it. Now when she's sleep and I get up and turn the TV on she has a fit turn off the TV or if I'm on the computer she tells me to turn it off and get in the bed. I can't just lay down and go to sleep like her, some nights I will toss and turn for hours and when I finally do get to sleep I'm awakened. Hence my evilness but I keep it to my self, until now when I can let it out in this blog.
Yesterday I went to see my son at the 21 day rehab. It took all the energy I had to get there but I did. They had a meeting with the family for a half hour. All these family members were asking, will they get high when they get out, what can they do to keep them from getting high, can they take some drug, can't remember the name, that will take away their urge to drink, or what about methadone. It got on my nerve that I said, 2 and a half years ago I was drinking, sniffing coke and smoking cigarettes and had I not gotten sick I would still be getting high. I told them that I still have urges. I told them that I had stopped using because I want to live. I had to be ready to stop mentally and that their love ones won't stop no matter how many rehabs, counselors, programs that they go to, they are not going to stop until they are mentally ready. After I finished my piece, the counselor asked if anyone had any more questions. No one did and the useless meeting was over. Well it was useless to me.
I love my son and I know I'm the only one he has and I want to support him. But he's draining me. He left his clothes and stuff at my daughters' house. Between today and next Friday he wants me to get to my daughters and get some of his clothes, shoes and his papers and bring to him for the next visit. I am so tired, I don't want to do nothing. But like I said I'm the only one he has, so some how or another I will do this for him.
I'm down to 301 pounds!! That's 16 pounds lost. I found this machine called the Health Master. I want this machine so bad. It's a blender that liquidfies vegetables and fruit, pulp and all. My juicer extracts the juice and wastes the pulp and to clean after you have to take the machine apart. With this it just a pitcher to clean. The machine costs $200 I asked my girls if they would buy it. They both should be getting income tax returns. I they don't hopefully I'll get a refund check and get it myself. I like juices and if it's easy to prepare I will juice often. I will lose this weight quickly and hopefully have more energy. Best of all it my push my body into remission. I use to juice years ago and I felt good. I'm excited and anxious.
I only have a little more of my life to tell and I will but I need to get rest and build the energy to stay focused. My head is in a fog, I'm stressed about the medicare, I called the SLE Lupus foundation to see if I can get help. I had a problem with my bank account and that had me stressed for the past five days. Not to mention all the above on my mind. I just need to do some meditation, praying and resting and hopefully in a few days I can write the finally pages of my story.
Yesterday I went to see my son at the 21 day rehab. It took all the energy I had to get there but I did. They had a meeting with the family for a half hour. All these family members were asking, will they get high when they get out, what can they do to keep them from getting high, can they take some drug, can't remember the name, that will take away their urge to drink, or what about methadone. It got on my nerve that I said, 2 and a half years ago I was drinking, sniffing coke and smoking cigarettes and had I not gotten sick I would still be getting high. I told them that I still have urges. I told them that I had stopped using because I want to live. I had to be ready to stop mentally and that their love ones won't stop no matter how many rehabs, counselors, programs that they go to, they are not going to stop until they are mentally ready. After I finished my piece, the counselor asked if anyone had any more questions. No one did and the useless meeting was over. Well it was useless to me.
I love my son and I know I'm the only one he has and I want to support him. But he's draining me. He left his clothes and stuff at my daughters' house. Between today and next Friday he wants me to get to my daughters and get some of his clothes, shoes and his papers and bring to him for the next visit. I am so tired, I don't want to do nothing. But like I said I'm the only one he has, so some how or another I will do this for him.
I'm down to 301 pounds!! That's 16 pounds lost. I found this machine called the Health Master. I want this machine so bad. It's a blender that liquidfies vegetables and fruit, pulp and all. My juicer extracts the juice and wastes the pulp and to clean after you have to take the machine apart. With this it just a pitcher to clean. The machine costs $200 I asked my girls if they would buy it. They both should be getting income tax returns. I they don't hopefully I'll get a refund check and get it myself. I like juices and if it's easy to prepare I will juice often. I will lose this weight quickly and hopefully have more energy. Best of all it my push my body into remission. I use to juice years ago and I felt good. I'm excited and anxious.
I only have a little more of my life to tell and I will but I need to get rest and build the energy to stay focused. My head is in a fog, I'm stressed about the medicare, I called the SLE Lupus foundation to see if I can get help. I had a problem with my bank account and that had me stressed for the past five days. Not to mention all the above on my mind. I just need to do some meditation, praying and resting and hopefully in a few days I can write the finally pages of my story.
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