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Embrace Today By: K. Wilhelmina Floria

Tears of happiness shall fall,
listen close for your destination call.

A river of tranquility flows through life.

Ride out the eye of the storm, pass the strife.

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.

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.

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 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.

Monday, January 10, 2011

Me Verse Lupus: Considering Suicide or not

Me Verse Lupus: Considering Suicide or not: "It was a little rough this weekend. I was feeling down again. I'm not complaining because this is the fate that God saw fit to give me so I ..."

Considering Suicide or not

It was a little rough this weekend. I was feeling down again. I'm not complaining because this is the fate that God saw fit to give me so I accept it, but can't stop being human about it and occasionally cry about. I had a wonderful time with my daughters and their children, good food and a delicious cake to slip on my diet for.  My son called from the rehab.  Of course he has a list of things he wants. He complained that the food is jail food.  I want to help him but I'm stressed because I don't have any extra money this month.   I went with out medication for a few days because I couldn't afford the co pay. I have my steroids and Cellcept which are the important meds, oh and I have the Revatio. I'm a proud woman and don't like to ask for help. I'm trying to figure out which doctors I should see because I can't see all that I need to see. I have two appointments this month, or should I say before my next SSD check. I need to see the eye doctor and the Hematologist, I don't know which is more important.

My daughter told me about her selfish father not Mr. 23 years this time, the other one.  He was getting paid to babysit the grand kids.  My daughter changed their school because he couldn't do it anymore.  They are in an after school program and my daughter picks them up.  He is still getting a check for babysitting. He stays on the computer all day long and doesn't assist my daughter with the cable or electric bill.  He brought a new Mac computer with a I think, a 32 inch screen.  I want to say something so bad.  I raised his daughter and didn't get any financial assistance from him the least he could do is help his daughter, she gave him a place to stay for 2 years now. Should I mind my business or open my mouth? I know nobody is going to make any suggestions, but I sure could use some.

I was in the bed all day Sunday. I was so tired, I slept most of the day and I was able to sleep all night.  While laying in bed I was thinking about my brother and mother. My brother had MS, he was a Vietnam vet that was shot and disabled from service.  He went to St. Johns' University and got a degree in sports management, but was never able to utilize it because he became totally disabled. Just before thanksgiving in 1987 he got sick, diarrhea, he wasn't eating and stayed in bed.  I don't know why we didn't call the ambulance for him. I guess because my brother was good at putting on a front.  I remember he had a bad tooth once and he took the pliers and pulled it out.  He was blind in one eye and the MS would make him lose balance and fall often.  He tried not to show any weakness to us, so we never knew how sick he was. We didn't know he had MS until he went to the ER after this ailment. My mother came home from a dinner and found him in bed bleeding from his eyes, nose, mouth and ears. His blood pressure was so high they couldn't read it on the pressure machine they had.  He went into a coma and died a week later. When we cleaned his room he had tons of blood pressure medication.  I believed he committed suicide.

My mother had lupus for about 12 years. Shortly after she was diagnosed she took pain killers and washed them down with vodka. My sister witnessed it and was able to call 911 and save her. Years later she had a heart attack, recovered went back to work. When she had a second heart attack she was forced to retire.  She did somethings that were strange now that I look back on it.  She was getting her full pay check for almost 2 years. She worked for the city of NY, she had sick time banked and annual time banked so she had to exhaust all of that. Then her Social Security and pension kicked in.  She moved my grandmother out of her apartment and sold the piano my mother had since she was a kid.  It was Mr. 23 years birthday, I was in the habit of talking to my mother the every night. She told me she went to the doctor that day and she wasn't feeling too well that she thought it was her gallstones.  Being that it was Mr. 23s' birthday and my car only went 30 mph I decided to stop by on my way to work in the morning.  In the morning I was running late. I went straight to work. I had to start on something as soon as I walked in, the receptionist called and told me my mothers' neighbor was on the phone.  I went to my mothers' the ambulance was still there.  They told me that my mother died.  My grand mother said my mother was worried about her friend that had throat cancer and didn't mention how she was feeling at all. My mother took the garbage out that morning and told the neighbor she had no time to talk and to leave her alone she didn't feel good.  That isn't my mother, she was always thoughtful of other peoples' feelings, she passed that trait on to me.  My grand mother said she came back in and went to bed.   My grandmother checked on my mother, her teeth were on the floor across the room and she didn't look right. Gran couldn't dial the phone so she went to the front door to see if she could find someone to help.  Mom knew she was sick from the night before.  She had nitroglycerin pills, she had baby aspirin, she had 2 heart attacks before this one.  To further prove my point that she committed suicide she wrote a note to me, my brother and sister. Telling us everything would be alright and God bless us. When we cleaned her room there were so many bottles of empty vodka all over the place.

I tell these stories because I worry about myself. Will my illness depress me to the point where I want to give up.  Will I too ignore the signs of something being seriously wrong and not seek help.  I have drugs that I can take that could kill me. Will I one day decide to take all  the lorazapam I have left. I have potassium chloride that I take daily, what would an over dose of that do? What about the revatio? Or maybe I can just stop taking my pressure medication. Yes I've thought about it.  I wonder if anyone would really care, will it be a blessing that I'm gone. Will I be missed by anyone besides my son? Do I really want to die now? No I don't I want to see my grand kids grow up and be there to help them through life.  However I want to know what my purpose is, do I have one? I want to write, I've always loved to write but I can't stay focused, I can't think of words I once used everyday.  I'm worried about my getting the medication that keeps me going.  I feel isolated sometimes like I'm totally alone in this world.  I get on the computer and go to the social networks my support group and still I feel alone.  I have no where to go except to the doctors. My girls don't have much to say to me, so I don't bother them. I call my family, a few call me but all in all I feel alone and I know it's all in my head. My mate is always going to the bar and doing her thing.  She says she'll take me here or we'll do this but never do, just empty promises.  I can't go anywhere because I can't afford to buy my meds, so how can I afford anything else. I know I must be rambling on and on. This blog is the only place I have to speak my my mind or thoughts. When I talk to friends and family they tell me about their lives, I know they don't want to hear the way I feel so I just say, I'm okay.  I don't want to die today, but what about tomorrow? Will I become so sad that I just give up? I believe that life is like book, you don't know what adventures will happen on the next page.  I'm one of those readers that will keep reading a bad book just to find out what happens.  I think of my life like that, no matter how bad it is I'll keep going to see what happens the next day.

Friday, January 7, 2011

Me Verse Lupus: Telling more of my story

Me Verse Lupus: Telling more of my story: "Today I'm not broken. Well at this moment I'm not, my moods are subject to change. One of the things I hate about this damn lupus is I don't..."

Me Verse Lupus: Telling more of my story

Me Verse Lupus: Telling more of my story: "Today I'm not broken. Well at this moment I'm not, my moods are subject to change. One of the things I hate about this damn lupus is I don't..."

Telling more of my story

Today I'm not broken. Well at this moment I'm not, my moods are subject to change. One of the things I hate about this damn lupus is I don't know who I'll be from day to day.  I read somewhere that the steroids can make you phsycotic, maybe I'm becoming bipolar.  I'm not hearing voices but the mood swings are crazy, no pun indented.  I won't take any mood altering drugs though, unless they give me cocaine in a pill.  The last time I took Cymbalta I was happy, so happy I didn't know how to handle it, it felt uncomfortable because I really don't know what true happiness feels like.  But today I'm good.

The last thing I spoke about was the raid on the house.  My stepson got seven years.  His girlfriend got probation. He brought her a engagement ring, and he had $900 on a gold chain, the receipt was lost.  How fucked up is that, they could spend money on jewelry but not pay rent to me.  I tell you I won't help anyone any more, I was taken advantage of.

His girlfriend moved out. I still had a house full of people. My oldest daughter was working for me in my home care agency.  She had a live-in case and was home only on the weekends. She had a boyfriend that was a drug dealer, gang banger.  That thing about telling your children you disapprove of their relationships, could and will result in pushing them together. It's true.  Neither me or Mr. 23 years like this man.  He was grimy, he had no respect for anyone. I could say he was/ is a pshycopath. I was at work and something happen I don't know what, but the fool had a tech 9 I think, or some big ugly gun. Someone said something to him or disrespected my daughter and he came out and shot at a car.  My neighbor was a Port Authority cop.  He had his back and didn't say anything.  My daughter cleaned the fingerprints off the gun.  He had a bullet proof vest in the closet and the gun. Both illegal. They picked up the the shell castings, the police. They raided the house again. Everyone was let go, I didn't get locked up this time, but both my daughters, Mr. 23 and my daughters stinking man did.  I just knew he was going away for a long time. He was released on a technicality.

While her boyfriend was locked up my daughter beat up this girl because she was suppose to have slept with her man.  From what I understand three guys had to pull my daughter off the girl because she almost killed the girl.  My daughter ran away and hid.  When the police came to look for her, I told them where she was.  It was a fight, she could press charges just like the girl.  My daughter was so mad at me. She was locked up for three weeks and when she stood in front of the judge the first time, she was so disrespectfully and when she looked at me, man, if she could kill with eyes, I wouldn't be sitting here typing this now.  They kept adjourning her hearing. Finally Mr. 23 spoke to a lawyer in the court room who was getting his clients released.  He told Mr. 23 she'll be out in a couple of hours and he was true to his word. My daughter was never charged. But none the less she was acting real thug.

My daughter didn't understand that I was looking out for her interest. My step son was hiding from the police for 4 years and when they finally arrested him in the raid, the crime he was hiding from, they gave him hardly any time.  He screwed up his life for something that could of gone away easily.  I didn't want my daughter to do this. Today she has no record, almost has her BS and is working for the NYC Housing Authority.  She has two kids by the ass hole but today she knows he's an ass hole.

My youngest daughter had a boyfriend that use to come and sit in the house just to watch her. My daughter wasn't interested in him, but he finally wore her down.  He was possessive and use to beat her.  One of the guys that lived in the house almost choked him after I told him how he was abusing my daughter.

This guy I'll call him K. He was a true gangster.  He paid his rent to me, regularly.  He was over protective of me and thought I was a good person.  I use to sit up at night drinking and doing my coke, I would sit out on the front steps and just hang out.  Mr. 23 was with the woman who became his wife or one of the many women he was seeing. I got K and another of Mr. 23 friends drunk. I went up to bed and left them out side.  One of the guys kicked my dog.  I loved my Sammy, he was the best pet I ever had.  Well K almost killed the guy over my dog.  Mr. 23 was out or passed out in bed, K and I would sit up at night sniffing and talking. He was a good man, but short tempered.

The artist, who was Mr. 23 friend like his brother, I mentioned him several time earlier.  He's a gangster too, he was creating album covers for some of the known rappers. Again I didn't get any rent money.  The artist liked to smoke PCP, now I've had angel dust, that's mint leaves soaked with PCP, dried then smoked.  The way the Artist smoked it was to dip a cigarette in the liquid and then smoke it.  Mr. 23 and I did this together and it was nice.  It was like we were in a dream and we talked about a future that was going to be wonderful.  We made love and it was nice.  I liked that PCP but knew I was tripping and didn't want to get hooked on that. Mr. 23 got hooked and started smoking it everyday and it bugged him out. He was running around the street talking about buying foreclosed houses and reselling them. He was out in the street doing karate. 

One day he came home and beat me with a paddle until I was black and blue on my ass.  The artist came upstairs and got him to stop.  After he packed up and move out to his now wife.  Before that he was threatening and acting crazy.  I called the police and he was taken to the hospital.  The hospital called and said they were releasing him. I told them he just threatened to kill me and the doctor said he sounds normal now, call him and see.  I called Mr. 23 and when he heard my voice he said, "you called the police on me, when I get out here I'm going to kill you!"  I called the doctor back and the doc said they were going to keep him.  This is when things started to change.

My mate just woke up and just commented about me being on the computer.  She killed my good mood as usual.  I will be telling my story about her soon.

Wednesday, January 5, 2011

Me Verse Lupus: Broken inside

Me Verse Lupus: Broken inside: "I've been feeling a bit depressed since the year has come in. I'm trying to get out the funk but it's just lingering on. My feelings on that..."

Broken inside

I've been feeling a bit depressed since the year has come in. I'm trying to get out the funk but it's just lingering on. My feelings on that is fuck it. I've always had me and I shouldn't care how lonely I feel because I have God and me always and that's all that matters. With that said, I lost a total of 15 pounds!  I hope that by the time I go to the doctor next month I will be under 300 pounds, that's just 5 pounds away. 

Yesterday I received a call from the SLE Lupus Foundation asking about the health insurance I have with the Health Care Reform Act.  They gave my number to an international news station, online newspaper.  They are coming to interview me today to find out how the health insurance impacted my life.  The House is trying to repeal the Health Care Act. They meet on January 12th I believe.  Anyway the site is Aljazeera English. I'll post the article or video if they use me.

I started working on my novel yesterday.  It's hard for me to stay focused.  I remember I use to have no problem writing.  I use to write poems and short stories in like one, two, three.  It sadness me because writing is my love and it is difficult today.

I feel so isolated and alone and the funny thing I have always felt this way. Even when I was in a room full of people.  Just before I became sick I wrote the following poem. I was having difficulty breathing. I was tired all the time and I was just sad.


Broken Inside

 I’m so sad,
I don’t know why,
the blues make me cry.
I am a nut without a squirrel,
alone in this world.

I need comfort and peace.
Where are the joy police?

My heart should be cold,
now that I’m old.
I know.
Love and devotion,
are  false emotions.
With every breath,
there’s a longing for death.
Once I could spread my legs,
and make strong men beg.
Lust was a game,
my juice made some insane.
Now I need a pill,
not for a common thrill,
but to capture, my lost sanity
and gain some mentality.
Confused and self abused.
I’m broken inside,
At this moment, I want to die.


I want to tell the rest of my life story, especially since I'm almost up to date but give me a few more day.

Sunday, January 2, 2011

Me Verse Lupus: My New year

Me Verse Lupus: My New year: "I'm back!! I'm feeling okay today. The rash is gone, the blister on my hand popped and it's healing, it no longer hurts. I'm bre..."

My New year

I'm back!! I'm feeling okay today.  The rash is gone, the blister on my hand popped and it's healing, it no longer hurts.  I'm breathing easier.  I needed to use the oxygen a few times when I was sitting. I had a hard time breathing out there in the snow when I went out to get on the Access-A-Ride and got off. But I did okay yesterday when I got home. I came in ate, unpacked took a shower and got in the bed around 5 pm.  I got up a few times to use the bathroom, take my evening meds but all and all I slept and slept and slept until this morning. I got out the bed at 7:50am, I got up because I needed to take my medication.

I had an interesting time with my online support group, there was an argument. Can you imagine?  I'm not going to get into it, only to say I am disappointed in myself for feeding into the bull shit. I don't know how active I will be on the site after this.  I joined the lupus, COPD and PH groups. The lupus group was the most welcoming. Now I have to just watch and see how it is from now on.

I went to my daughters', I was there from Wednesday until Saturday afternoon. It was peaceful but I was sad.  Sad that my daughters don't share my family values, traditions or togetherness what ever it is, I don't know.  My daughter didn't get a Christmas tree, she told me this but still the kids didn't show any evidence of Christmas at all.  No candy canes, Christmas drawings.  They got video games so there weren't any new toys around the place.  They thanked me for the gifts I gave them, with money I spent that today leaves my bank account with a negative balance.  I did what I could yet they tell me they wanted something else.  I know they don't know better but it still hurt a bit.

My youngest daughters' son was with his father.  I asked why she didn't tell me to bring him when I came on Wednesday.  She says he would mess up her weekend, then tried to clean it up by saying he needed to spend time with his daddy.

On New Years Eve, my daughter brought us McDonald's for dinner.  She got out the bed around 12pm.  I asked if we were going to have rice and peas and vegetables and some meat.  She said it's a waste of money.  I got even sadder. When we were kids and when my kids were kids we always blew up balloons, we had hats, noise makers and there was a dinner cooking.  When I was a kid my grandmother would have stinking chitterlings cooking, pig feet, spareribs, greens, potato salad and rice and peas. There were drinks and champagne for the new year.  We would pop the balloons, toast the year and give everyone a hug and kiss.  When my kids were little we did the same thing only we didn't have pork, we had beef ribs or steak, no pork.

My daughter brought little horns, and sparkling apple cider.  It was just me and my two grandchildren, my daughters left and my other grandson wasn't there.  I tried to make it feel like a big thing for my babies but it was sad to me.

I don't make resolutions, I'm still not putting demands on myself but I plan to work on my novels and finish them. I'm going to try and work at them like a job. I don't have any appointment until the end of the month so I will have time to write a lot. I'm praying that I can be discipline.