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My family

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.

Friday, December 3, 2010

Me Verse Lupus: Lupus is invading my body today.

Me Verse Lupus: Lupus is invading my body today.: "My son came but his escort didn't come with him. My son said the guy probably would feel uncomfortable so he went his own way. My son had a..."

Lupus is invading my body today.

My son came but his escort didn't come with him.  My son said the guy probably would feel uncomfortable so he went his own way. My son had a bowl of cereal and for lunch he had the Cornish hen with stuffing. And guess what there's still another half of hen left.  I posted a vent the morning my son came and thus deleted it. Those who caught the vent know what I'm talking about.  My son checked his benefit card and found that he had a couple of hundred dollars in food stamps on his card.  So he took my mate to the grocery store and spent a lot of money I don't how much but my mate gave him $50 in cash.  I think she got about $150 worth of food. I haven' heard from my son since, but I'm sure he's okay.  The essay I wrote on my other blog My 2Cents not worth a penny, 'A Lesson to Learned' was written for my son. I really hope he hears it.

I ate some Jamaican food on Wednesday night, rice and peas and oxtail. It was so good.  Yesterday I had cereal for breakfast and for dinner I had fried liver with onions, mash potatoes and peas.  Yum.  I ate a cup of butter pecan ice cream.  And don't forget my potato chips.  I eat the lightly salted chips, but still I need to leave them alone.  I eat the frozen grapes but it's too cold now and that's the only way I like them. I need something non-fattening that I can eat to fill the void of not smoking.  I don't want a cigarette but I still feel the void of not doing something with my hands, that's where the chips come in.  Any suggestions? Please leave a comment and give me some ideas.

I'm tired, I've been tired for several days now.  My mate she thinks I'm lazy.  I tell her I'm tired she thinks once I sleep I shouldn't be tired any more.  Yesterday we were sitting at the kitchen table and my cell phone was in the living room, about 15 feet away. I said damn I need my cell phone, I wasn't saying it to her, more  like fussing to myself out loud.  She says it's right there go get it.  I just looked at her.  She went and got it for me.  I wanted to come downstairs and get undressed, check emails and such then go lay down.  But I sat at the kitchen table for about an hour longer because I didn't want to move.  I finally came downstairs and got on the computer and again I didn't want to move.  I finally went to bed and waited up for my mates' friend. It was after 11 pm when my mate called and told me, her friend would be in after 12 am and she would be home to wait for her. 

I slept all night, got up once to go to the bathroom.  I was cold and got back in bed, put the covers over my head and I went back to sleep.  I went into a deep sleep, when I woke up I didn't want to open my eyes, I didn't want to yawn, because that would be too exhausting.  I peeked at the clock and it was 8am, the time I take my cellcept, I take it then so I can eat by 10am.  I wanted to get up and take my meds but I couldn't make my body listen.  I think I dozed off again because the next thing I knew it was after 9 am.  I pushed myself out of bed.  I have birthday cards to make, my newsletter to finish.  I had to get up.  I felt guilty laying in the bed. 

I get up and my mate asks me how I feel.  I usually tell her I'm okay, this morning I say not good and I explain that I'm tired and she asks what the doctors say. Nothing.  Can I take the B12, yes but they don't do anything. When I got the B12 shots the first one made me feel more energized, but the 5 proceeding shots did nothing for my energy level.  On Daily Strengthen they were talking about a drug 'Provigil' I go to the doctor Monday, I'm going to ask about it. 

In addition to being tired I've been cold.  But that's no problem because I like to be cold.  It's just weird because I'm never cold. My temperature is at it's usual 96.7 or 97.3 never 98.6 which it's suppose to be.  When I was taking the cytoxin I was told my temperature would be lower then normal, I haven't had cytoxin in over a year.  Is this a flare or just a lupus norm.  I mean I've been tired, but once I get out of bed the energy charges up.  I feel like I ran out of gas like an old car. You can turn my key and I'll cough and spit but I'm not reeving up at all.

Today the ocean has no fish, the sky no birds, and the earth is without foot prints.  The sun won't shine and the moon vanished in an abyss of darkness and me in a vacum sucked in a hollow world where energy is dead. Oh it's just a lupus day.

Thursday, December 2, 2010

My 2Cents Not Worth A Penny: A Lesson to Be Learned

My 2Cents Not Worth A Penny: A Lesson to Be Learned: "In the beginning there’s a sperm and an ovary. A joining takes place in the womb, an embryo develops, grows and an infant is born, innocent..."

Monday, November 29, 2010

Jane Krakowski to Light Empire State Building Orange for New York City’s Lupus Foundation

Jane Krakowski to Light Empire State Building Orange for New York City’s Lupus Foundation

Me Verse Lupus: The continuing drama of 23 years.

Me Verse Lupus: The continuing drama of 23 years.: "Another morning, another headache with heavy dry eyes. But I feel okay otherwise. I'm not a misfit today. I'm alive and ready to face the ..."

The continuing drama of 23 years.

Another morning, another headache with heavy dry eyes.  But I feel okay otherwise.  I'm not a misfit today. I'm alive and ready to face the world of cyberspace.  I don't have to go out all week.  My daughters' birthday is on the 7th and she's having a party with her friends on Saturday, so guess where I'll be. Yea baby sitting.  I hope I can store enough energy.  I worked on my newsletter yesterday, I designed  the front only thing is I set it up as a poster so all the work was for naught.  The cover is the hardest part because I add the graphics.  Noe I have to do it over again. What else do I have to do?  I started my sisters' birthday card, just six more to go.  To think I wanted to go into the card making business.  I need to just concentrate on my writing.  It's what I enjoy and it has no demands yet.

I went a little head of myself the last time I wrote about being in the house. My mother worked for the Parks Department, she had a high ranking position she worked with the commissioner.  As I mentioned her little church was jammed packed.  My boss was impressed with the officials that came to my mothers' funeral.

Mom had insurance that covered the funeral and she had a 401k that she left to her children.  We each received almost 80k each.  I deposited that money and that night I cried when I wrote checks to pay off all my debts.  I brought a brand new 1993 Mazda MVP, I loved that car. It was low mataince, but still a stupid move.  I should of gotten a used car, because I had still had to make the payments each month and that became difficult when Mr. 23 picked up his habit again. I had my job that I was embezzlling money from. so I was making the payments and the paying the bills on the house with my salary. 

Mr. 23 was responsible for feeding us and some nights that didn't happen. So I took a second job with McDonald's. Father was suppose to watch the kids, keep them out of trouble.  His son, who I love as my own moved in because he got arrested and needed to change his address. A place to hide. His son had lots of friends that would come and visit and hang out and smoke their weed.  It was okay because I smoked mine too. 

My son was running around drinking and smoking and behaving erratic.  He got arrested for stealing a Walkman from this kid in school. I used the last of my money to bail him out and pay for a lawyer.  The lawyer suggested I take him to the doctor which I did and they sent him to a mental hospital.  I had insurance so it was a nice place.  When I went to see him they had him strapped to the bed and said he was schizophrenic.  Were they crazy! Not my son, he's just smoking weed and drinking too much.  How could they give him medication before they tested him.  They said he beat up four orderlies.  They were lying. I went to the library to learn about mental illness.

My oldest daughter was going to school and hanging with her school friends. She was doing what she was suppose to.  My cousin who was staying with us was doing the same. They were smoking weed too. My cousin was from California and the gangs and was a bit gangster. After the cousin went back to California, one of my daughters' friends moved in because her mother didn't care and eventually moved away and abandoned her. Father and I were in the process of getting guardianship.

My youngest daughter use to run the streets.  Everyone knew her.  She worked in the store packing bags, collecting bottles, shopping for old people and taking care of other kids dogs.  She worked hard, but she hated school and she stopped going. I would take her to school and she would run out the other door.  The agency for children services investigated me. They had me put a pins warrant on my daughter and she was put in special education and she went to school some what regularly but by the time she was 16 she quit.

Father didn't pay any attention to them. I was working, I would leave at 8 am and not return home until after midnight.  On the night I was off I slept.  On the weekends I would work 16 hours to help make a 40 hour week.  I trusted Father to look out for the kids, but he was chasing crack.

The IGs' came to my job with guns drawn and all.  We had to show ID and proved that we belonged.  They sealed up our records and we were under investigation.  They called me to the State Building and questioned me.  They said I wasn 't the focus of their investigation but that didn't make it less scary.  Long story short they shut the office down.  I was kept on to assist with closing out the records and such.  I quit working at McDonald's while I was still working for the home care agency so I could collect the unemployment when it finally closed for good.

McDonalds was a fun job, I loved it.  No stress, but it was a lot of work. cleaning the store and running around to serve the customers in less then 3 minutes.  I use to have a long line because the regulars wanted me to assist them.  I use to work the drive through, both windows, I would take the order and prepare the food for them. They were going to keep me, train me to be a manager, I was already bossing the kids around even the ones that were crew mangers.  But I was afraid of getting stuck there and taking a slow trip to the top.  Any young person who needs a job, career. McDonald's is the place.  They will train you and you could advance over the years to owning your own Franchise.  The owner of the store I worked at was 34 and worked for Mc'ds since she was 14.  I was 37 too old to start at the bottom.

My son did six months in jail and came home and after a month or two was arrested again, I don't remember for what, I think it was over $10 he stole from some one. They gave him time this time I think he got 5 years.  He was in a nice prison but he got paranoid and attacked a guard and they sent him to max and he was treated badly because he attacked a Correction officer. They put him in solidarity confinement for something like 11 months.  My son caused all his tribulations, by refusing to take medication. By refusing to follow the rules and regulations.  Before he ended up locked for the five years I tried to get him in programs and he wouldn't try.  Today he's in rehab because he didn't like the rules of the building he was living in, and also because he wants to get high, and drink.  He's in rehab and still complaining about the facility.  He wants to do what he wants, when he wants, and always ends up fucking his life up more.  He's my son and I love him but I don't know what else to do or say to make him see he has to follow the program and eventually things will work out for him.  He doesn't hear, all he does is tell me how much he hates it here, there or where ever he is.  I guess he forgot he spent 12 years of his life in prison.

Now I was unemployed and looking for work. Fathers cousins' girlfriend, C and I  were hanging out a lot.  We were hitting bars, drinking and sniffing drugs. We were close.  While we were doing our thing, father and his cousin were doing theres'.  C's godfather lived on the other side of town. C told me that she saw Father coming out of the upstairs apartment. Her godfather told her this woman lived up there. I didn't pay it any mind. Until C told me she saw Father at the bus stop with the woman holding a baby.  This got my attention.  I didn't care if he was having an affair.  I mean I was doing my thing and an affair with a woman was better then the affair he was having with the crack and heroin. But having a baby with another woman. Oh no!

Especially when were struggling finaically.  We weren't eating regularly and we didn't have heat every month.  There were many nights that we went to bed in a cold house.  We would all sleep in my bedroom.  Use hot plates to cook with and heat the room.  We would sleep under tons of blankets and in our coats and hats.

 I got a sinus infection. No job meant no insurance but I got antibiotics from the city hospital emergency room.  I was given bacitratian which contains sulfa.  I was in pain, my head was pounding and I was taking 24 over the counter Tylenol pills a day for about 3 days.  I ended up laying in bed, shitting on myself.  Father would clean me up and tell me to go to the ER. I refused I told him the antibiotics needed to kick in.  Finally he said to hell with this and helped me shower and took me to the ER.  I didn't have any fight left. By the time I got to the hospital I had no white blood cell and I damaged my liver with all the Tylenol. 

While I was in the hospital father let my oldest daughter and her friend use the car.  They crashed the car. Father was going to one hospital to see my son, to another to check on my daughter and then to the next to see me.  The car was totaled and the girl whos' mother abandoned her was killed in the car. The way that car looked it's amazing anyone walked out of it alive.

Two weeks or so after I was out the hospital and the girls' funeral. Father was taking me to my follow up doctors' appointment.  I stopped in Hallmark to get some thank you cards.  He waited outside.  When I came out he was talking to this woman.  I walked up and stood next to them, this woman stepped in front of me like I had no business being there. So I walked over to Father and put my arm into his.  She cut her eyes at me and they finished their conversation. As we walked to the bus stop and he told me he was messing with her friend. I told him he could of told her who I was.  This was 13 years ago, he was with the woman he married all the way back then.

Stay tune the story will continue.

Sunday, November 28, 2010

Me Verse Lupus: I'm a misfit today

Me Verse Lupus: I'm a misfit today: "I think I have recovered from my thanksgiving. I've been feeling off I guess it's due to the new medication. My stomach gets upset in the ..."

I'm a misfit today

I think I have recovered from my thanksgiving.  I've been feeling off I guess it's due to the new medication.  My stomach gets upset in the morning and of course I wake up with the headaches.  I've been cold most of the time, I thought I was getting a cold but I don't know.  I'm not sneezing or coughing more then usual.

I took the medicare stuff over to my daughters and she does understand it and it's still mind boggling to me, so she told me to gather all the info I can and give her permission to speak on my behalf and she'll pick out the best program for me.  Right now the monthly cost of my medication is over $3000 dollars.  There is no way in hell I can afford that.

My grand kids are really growing up.  I enjoyed seeing them and being with my children. I don't want to express what I really feel being with them over the holiday. Only that they put the funk in dysfunctional. I'm just going to say I'm thankful for them. And be happy.

My middle grandchild was going to his fathers' for the rest of the weekend.  He came back to Queens with me on Access-A-Ride.  His father was suppose to pick him up by 8:30 pm it was after 10 when he says he didn't have carfare or a ride. So my grandson spent the night it was okay.

My mate can be really thoughtful at times.  She unpacked and set up my c-pap machine and when she found out my grandson was spending the night she made his bed.  I got up that morning and fixed him grits, eggs and bacon that he requested and he enjoyed it.  He had some ice cream and then we went out in the yard where he ran around and had some fun.  When he came back in he played on the computer.  There was no crying or temper tantrums at all.  My mate took him to his father.

I wasn't feeling too well all day yesterday and still feel a bit under the weather today. I can't really explain what I feel like. I know I'm falling into a depression.  I don't know if it's the holiday coming up and I don't have money to spoil my grandchildren with.  The experience I had at my daughters or the uncertainly of who I will wake up with in the morning.  My mate is so moody, some days she's a sweet at my daughter sweet potato pie was and some days she's as nasty as the vomit from a drunk.

Any way I feel like a misfit from the land of misfit toys.  They were really depressed people in a mental institution you know.  I feel like I don't belong anywhere.  I don't have my own space, my nerves are on edge all the time.  But I'm not going to allow myself to fall into this.  I said several weeks  ago I'm going to happy for what I have.  I have a place to sleep and  food to eat.  I have twitter, FB and my great support team on Daily Strength.  I have my family that are polite to me and talk to me when I call.  So all this sad feeling is all in my head.

I don't have to go out this week so I can work on the December birthday cards, my sister, two of my children and a great niece have birthdays.  My 99 year old cousin will be 100 on the 22nd of this month and my brother will be celebrating his 38 year wedding anniversary.  I also need to get the family newsletter done.  I had it started, but the virus wiped everything out so I needed to start from scratch.  I like doing it all of this but I get distracted.  I feel fatigue but once I start I get on a roll, it's the same with my writing.  It's all about getting focused.

 I looked at my novel last week and I edited two pages.  I don't have much more to write to finish it. I just need to finish it. 

On Daily strength they were talking about this drug that gives energy.  I'm going to ask my doctors for a prescription.  I would love to have more energy. Maybe then I can get out this funk.  I'll write more when I start to feel better.