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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.


Saturday, September 11, 2010

My 9/11 memories

I'm home, I slept last night from about 10pm until almost 2am before I had to go to the bathroom. That was good considering that I wake up  to go every 2 hours.  I probably would have slept through had my mate didn't lift my legs to put my pillow under my feet.  I like when she does that, I feels like she's taking care of me. I woke up again at 4:45am and as usual my mind starts being busy.  Thinking about the kids and how yesterday was the last Thursday/Friday babysitting. Thinking about my greeting cards, my novel,  doing research of my family history, calling everyone to get some information for the newsletter, and about what I'm going to write about in this blog today. Thinking about my oldest daughter and how self centered she is. Not the baby as everyone would think but my oldest.  She has no time for anyone, she is on a mission and fuck anyone who gets in her way.  The family newsletter I gave her about 3 weeks ago is still unopened. The kids were yelled at for the living room being messy and for a letter she was looking for.  She is so unorganized, yet she blames everyone for her mess.  I can't say anything to her anymore, cause she things I'm criticizing when I'm only suggesting.  My youngest daughter brought her son over and she didn't come to pick him up and my oldest daughter is pissed that she didn't call to inform her that she was going to leave him.  I love my children and want them to be happy but they stress me and I need to back away.  My son he's another issue, he's mentally a spoiled child.  He's always crying, I need, want and what am I going to do, and he expects mommy to take care of him.  My heart and compassion is mushy and I want to help and take care of all my babies, but I have to learn to step away and let them go. Tears are filling my eyes and I don't want to cry, I'm so sick of crying, I wouldn't mind if when I cried I would pee less.

It's 9/11 nine years after that fateful day.  That year 2001 was a crazy year for me.  My biological son was in jail.  I rented out two rooms in the attic.  My step son was living with his girlfriend in one of the rooms she was to pay $75 a week and the other room was rented to an old friend for $150 a week.  He was a bit odd, never showered, washed his hair but not his ass.  He didn't use the bathroom, we later discovered he was peeing jars and shitting in plastic bags.  He brought roaches in the house.  He had millions in that room and of course they wandered around the house and invaded. A friend of my 23 year old man was sleeping in the living room.  He was a slob, he chained smoked and left his cigarette butts everywhere in his empty cigarette packs.  He was almost 400 pounds and even though he gave us the couch he slept on it was of no use after he was sleeping on it night after night. My step son was selling drugs on the streets, I told him not to do business in the house and he assured me he wasn't. One of my youngest daughters friend was always over. His mother didn't want him and he was basically on his own, so we were looking out for him.  He was about to get locked up when all of a sudden his charges were dropped. Lets call him S to make telling my story easier.

I feed all these people and rent was paid a few weeks but when it stopped it stopped.  It was a party house.  I was drinking and sniffing my coke.  The guy in the living room was smoking dust and got my man to smoke and he bugged out on it.  Everyone else was smoking those blunts.

My girl friend and I were going to hang out that night, after work it was Friday night. We went to my house in her car.  When we got to my house the police were all over it.  They raided the house.  I went in and was arrested.  Everyone was hand cuffed, the men on the floor, my daughter and my step sons' girlfriend was sitting at the table. The men were on the floor belly down handcuffed in the back.  They brook the door and frame.  They tore up the house and commented that it didn't look like a drug dealers house.  All I had of real value was the 46 inch TV, everything else was from when I moved in or was there from my family. Th police knew everything about us. It wasn't hard to figure that S was their informant, he had attempted murder charges that were dropped.

They took us to central bookings and we spent a night in jail.  I didn't go to the bathroom that night, I didn't eat or drink anything either. When you're locked up in central bookings in Queens, NY.  You don't know what time it is, you don't know if it's day or night.  There's no TV and nothing but benches, cots and a bench. as people go out for hearings you could move around to the spaces they left.

I was on-call with my job I called someone to take the on-call for me.  Fortunately I called someone who understood what was going on because she experienced it.  It's amazing how cool I was considering how nervous and anxious I am now.  My step son took all responsibility and we were all released late Satuarday night.  We met out side, I got some money out the bank, and we meet  at home. What was left of it.  They went through every square inch, tore up everything.  In my tenants room they found guns, he inherited from his father only he didn't renew his licence so he had to go back and forth to court on that.

It worked out.  A few months later, when things were back to normal I was on vacation from my job.  I was going to tour NYC, go to the Empire State Building one day, Gracie Manor, central park and so on.  But I was tired, what a surprise and didn't do anything but sleep, clean and hung out drinking and sniffing. My neighbor would calling me through the window every morning. I was suppose to go back to work on Monday but decided to take an extra day.  I figured I'll go to the World Trade Center, go to the top since I never been up stairs.  I've gone to Alexanders' when it was there, sat in the mall and passed through to go to the Path Train when I live in Jersey City.  But never upstairs and I didn want to go. I was tired and said to hell with it I'll go one weekend later.

On that Tuesday morning my neighbor was yelling up to me as usual. I tried to ignore her because it was my last day of vacation and I wanted to rest.  But something in her voice was alarming so I went to the window and she asked, "did you hear what happen?"  I told her I didn't and she told me to look over to the west and I saw smoke, she said a plane crashed into the Twin Towers.  I trembled.  I turned on the news, listened while I dressed and sat in the living room to watch the 46 inch just in time to see the second plane crash.  It was a surreal feeling.  Had I went back to work that morning I would have gone to my Brooklyn branch I would of saw it all from the office window.  Had I been in Queens I would of seen it from the street.  Had I went to the Bronx I would have seen it over the Whitestone Bridge. No matter where I went I would have been stuck.  I was worried about my friend who I grew up with, she and her fiance worked around the 57th floor I think.  She was fine when I spoke to her the next day, she stopped to return a blouse before going in, her fiance on the other hand was going to work earlier in the mornings and he was at his desk, we assume when the plane hit, he was never found.

The next day there was not train service.  My grandson was in the hospital, he was 2 weeks old and had jaundice.  The hospital was eerie, the staff was ready for casualties. but it was quiet, no body came.  When were able to go back to work I went to the Queens branch so I would be close to home. When I went back the Brooklyn branch everyone on the trains were friendly, it was like we were family.  We all seemed to notice a lot of people missing.  I took the "J" train which went under the World Trade center and most of the people who rode with us in the morning got off at Fulton Street.  For weeks there were delays because of bomb threats, the police were visible in the tunnels on the trains and I was happy to see them considering how much I hated the police after the raid on my house. For days after the towers fell we could smell the smoke in the air.

Today I can remember the events like it was yesterday.  I remember the tributes they gave, especially when Bret Midler sang,  'You are my hero,' she sang it with so much feelings, I cried like a baby, I always thought she was a great entertainer but at that point she became my all time favorite.

I guess God had plans for me, He spared my life at that time so I can be here 9 years later. So even though I complain about my life I believe I have a purpose and I hope to figure it out.

Friday, September 10, 2010

When I was shady I was confident

I'm tired today.  Like always I over did. I woke up at 4:30am yesterday cause I couldn't get back to sleep.  When I got to my daughters' house,  I took a walk to the grocery store, shopped and walked back to my daughters.  I had my two grand babies with me and my son who was a blessing.  I brought stuff to make chili, rice and bread pudding.  They liked the chili, but didn't care for the bread pudding. My son helped, washed dishes as I worked, opened cans, fried the ground beef. When everything was done my youngest daughter came and dropped off my grandson, she fix the kids plate of food. Two of the neighborhood kids came over and I fed them too. I cleaned up the kitchen, by the time I finished their grandfather came in and put them to bed.  as usual I slept on the love seat.  I am 5'7" and as we all know over 300 pounds.  So by this time on Fridays I am drained. This is an example of lupus being unpredictable, my nose is stuffy, my right ear is clogged and my throat is itchy.  My breathing is heavy also. I don't feel sick so I don't know if it's the tiredness or a flare.

 My babies are being great today.  Only a few fights, and they are using their in door voices most of the time. I will be getting in the shower pretty soon and just relax until 8 pm when my ride is due.

While laying in the bed, I mean on the love seat this morning I was thinking about the last time I felt totally confident and that was when I was 16.  I was young and beautiful with  my future ahead of me. I learned how to balance going to classes, cutting, and playing hooky without too much negative attention.  I was a cocky kid. Knew everything, crazy when thinking about it I could of been out on the street.  I saw this show the other night about these teenage girls who got picked up by pimps and were forced to prostitute.  They were stuck and believed they weren't good for anything else.  That could of been me.

My mother was diagnosed with lupus when I was 16.  I don't know what she was going through.  All I know was that she lost her hair.  She had to be around 48 years old, and going through menopause. On night I said something to my mother and it is by the Grace of God that I am still alive to write this blog today.  My mother raised her hand to slap me in the mouth.  I backed up and her hand came down on this crystal punch bowl and shattered it in a million pieces.  I don't know what I said to my mother, but whatever it was it really pissed her off. If her hand connected with my head I would of shattered the punch bowl with my head.  Back then when your mom said, 'I brought you in this world I'll take you out' they meant it. Today I'm truly sorry.

I was so full of my self when I didn't have a damn thing, I was stealing money from my aunt and uncle and not ten, twenty dollars. I was stealing hundreds.  I figured I had enough to go away if I needed to.  What was I doing with that money? Buying my cigarettes, refeer, beer and what ever junk food I wanted.  It's crazy that the time I felt the most confident I was the most shady. I was stealing from myself, that money was for bills, despite all my thieving the lights, heat and water stayed on.  I was an idiot, in more ways then one.  When my brother called me a fuck up, I really was.

God forgive me for my ignorance of youth.

meverselupus

Warning !!!

WARNING!!!


Things NOT to say to someone with a disabling chronic condition.






…But you don’t look sick.


…Everybody gets tired.


…You’re just having a bad day.


…It must be nice not to have to go to work.


…I wish I had time to take a nap.


…If you get out more.


…You’re just getting older.


…If you’d get more exercise.


…It can’t be that bad.


…It’s all in your head.


…You’re just depressed.


…there are people worse off than you.


…You’ll just have to tough it out.


…You just need a more positive attitude.


…This, too, shall pass.



I wouldn’t wish what I have on anyone, but, unless you get it, you just don’t get it.

Thursday, September 9, 2010

Me Verse Lupus: So is the life of Lupus

Me Verse Lupus: So is the life of Lupus: "Yesterday was yesterday. I got up early and was out the house at 6 am I went to the clinic to get my meds. It's a game I play with myself...."

So is the life of Lupus

Yesterday was yesterday.  I got up early and was out the house at 6 am I went to the clinic to get my meds.  It's a game I play with myself.  The earlier I get there the earlier I get out.  I want to be one of the first 4 people so I can be one of the first.  You see it doesn't matter what time you get there it's two hour minimal wait.  So if I get there by 6 am I'll be out by 9:30.  If I get there by 9 when they open I may not get out there until 11 am and my day is gone.  I don't mind sitting there, it's air condition, and it's quiet.  I read or listen to my ipod.

Yesterday, there was this man who arrived around 6:30 he had a specimen he wanted to drop off.  Remember the movie 'Car Wash"  The nervous man who had a urine specimen, that's what he was like.  He stopped every aide, nurse and patient to ask where to drop off his specimen.  Someone told him the area doesn't open until 8 am but that didn't stop him stopping people and waving his and asking them where to put, get this "his sperm" specimen which he proudly told everyone he had. See what I'm saying entertainment.

I got my pharmacy number at 8:30 and went over to medical records to request my records to have available when I start seeing new doctors with my health insurance starting in October. I don't want any problems or delay in getting my meds. I got back to the pharmacy just in time for my first number to be called and was out by 9:30  I took a cab to the check cashing place, I got the money order for the new insurance, then walked over to Walgreen and got my vitamins, they had a 2 for 1 sale.  I'll have calcium for almost 2 years.  I live only 4 blocks away.  I put everything in my backpack and considered walking home.  But thought it would be too much.  I took the bus.  It wasn't crowed but the handicap seats were taken, 3 by the elderly and two by this young girl on her cell. I was too fat for the seat that was left. I got off in 3 stops so I stood.  I walked the block home and once I got in the gate I sat on the steps for about ten minutes.  I couldn't move.  I think it's the 300 pounds more then the lupus making me tired.

Once I got inside, I went straight downstairs to change my clothes and put my stuff away.  I was drained,  I spent the rest of the day in front of the TV.  I wanted to work on the family newsletter.  Even wanted to peek at my novel and see if I could get into that. But I was tired.  I was in bed by 8pm and I guess I was sleep before 8:30, I've been up since 3 am it's 4:30 am, now.  I'm tired but that busy mind of mine is at it again.

It's Thursday and time for me to go take care of the grand kids again.  School started yesterday so I'm sure they'll have lots to talk about.  I hope my daughter has plans for them for after school  and this is my last week with them.  I love my babies and I love seeing them but I want my time back. It's like as soon as I get comfortable it's time to pack for an over night trip.  It's a chore to get my things together, take apart my
c-pap machine before I leave and when I come home.  Her kitchen is tiny, her bathroom is tiny and her couch is uncomfortable. she offered me her bed but she smokes and the smell is strong in there.  My c-pap machine smells like smoke once I get home as it is.

I am so anxious about getting new doctors. I feel like it's hope for something different, maybe a change in medication that may be more effective. Maybe some treatment I couldn't get before. Anxious to meet the doctors and hopefully find ones as nice as the ones I've been dealing with.  Hope that they have some miracle cure for my obesity.  That they schedule me to have the heart catherazition quickly and find out if I have Pulmonary Hypertension, especially since they say once treated I my breathing will get better.  Then maybe I can do more and not feel like a lazy bum.

I'm tired, I'm out of Benydryl, don't think I'm going to get anymore they weren't working anymore.  I have some Lorzapam, not suppose to take it because of my lungs, but it works.  I'm tired but know when I lay down sleep isn't going to come.  I wish I can sleep for 8 uninterrupted hours. Not even to get up and go to the bathroom which is getting scary since I feel dizzy when I wake up and walk. Well what can I do so is the life of Lupus

Tuesday, September 7, 2010

My Baby Boy

Another day that the Lord has blessed me with.  I woke up about 5 am it took a while before I was able to fall back to sleep but only until 8am.  which is good because I will be able to have breakfast early.  I have to wait 2 hours after I take my cellcept.  Doc says it works best on an empty stomach.  I had my morning headache and my eyes are acting funny but I feel pretty good.  Except a bit guilty about the bread pudding. It is delicious, but well I'm over 300 pounds, I'm not going to lose any weight like that.

I hope to start on my family newsletter.  First I need to see if I can find any info on our ancestors.  I think I'm hitting a brick wall with that. 

My son is going to be 33 years old in December.  He was born a month early, yet he weighted 5 pounds 2 ounces.  You see I probably caused his early birth.  My sister and I went for a walk, we went to this guys' apartment. They were smoking reefer.  I took a drag, the next day I was in labor. It took 36 hours for him to be born.  He had a perforated abdomen and need surgery to close a hole in his belly. He was born on the 17th and cut on the 19th.  He was my heart, I loved that baby so much. His father was in jail of course, and we wrote to each other and I promised to take care of his baby.  When they opened him the hole had sealed it self. He had an IV in his ankle that tore his skin so it had to be put in his head, he still has the scars.  It was about two weeks before I got to hold my baby, I could touch him through the incerbator but it wasn't the same.  The nurses said he melted when you held him when he was finaly  able to be held.

He was a good baby, smart, helpful.  I meet Mr. 23 years and I moved into a hotels with him, another story I only mention it to say that I exposed my 4 year old son to pimps, transvesties, hookers and drug dealers.  I don't know what he saw or heard.  I did teach him, his colors, his alphabets, shapes and sizes.  He even knew some words.  We moved to Jersey City, poor ass city, well it was when I was there.  The apartment we had was full of roaches and mice and no heat except a week before and after the welfare checks came on the 1st. 

My son started school, the teacher loved him.  She was impressed how smart he was.  But I couldn't stay there with a new baby so I moved home to moms'.  I put him in the neighborhood school.  They didn't have room so they squeezed him in the 1st grade with the kids that got left back and were bad.  My son picked up bad habits and I didn't know I had the right to have him taken out of that class.  This is why teenagers shouldn't become mothers, no matter how mature you think you are.

In the second grade we were living in the basement of my man's father's house.  It was unfinished, only one room and the bathroom was down the other end where the boiler room was and the room was unfinished.
His step father use to peek at us having sex.  We had my son and two daughters in the room with us.  I was a stupid woman, no girl I was just  24. My son was sick.  I took him to er and they said he had a virus, it was right after Christmas and they had a bunch of kids in the er.  My man noticed that my son was in a lot of pain so I called mom and she took us back to the er.  I carried my 7 year old son into the hospital and they knew something was wrong when they saw me carring a child almost as big as me.  I was skinny then.  It turned out he had an appendixitis and it erupted.  Another hospital stay.  Oh he was in the hospital when he was about 2 years old.  He had a stich left from when he had surgery as a baby.

My son started having problems in school and it was mandated that I take him to therapy.  He was deemed intellegent and there were no issues.  We moved into the projects.  Finally a real family life.  My man was on crack and herion but still we had an apartment and a somewhat normal life.  I smoked my refeer around my kids, I drank and smoked cigarettes on the weekends.  I didn't see anything wrong with it. On New Years Eve I would let them toast the year in with a glass of liqour.

My son was getting in trouble, stealing and what not.  My sister and her husband offered to take him and get him out of the city.  They had a child that had cancer and my son was really an added burden.  My mother died and we moved into her house.  My man had been clean and sobber for several months.  But those people, places, and things. Anyway my son came back home and was getting in trouble. He was arrested twice in like a few days, for shoplifting, then for robbing a kid in school.  One night he was playing chest with my man and he started crying.  He told my man he was seeing these things flying around..  I don't remember how we ended up taking him to the doctor but they had him admited to a psysic ward.  He was diagnoised mentally ill.

He was 16 and from that point he went in and out of the hospital then in and out of jail.  He spent two years in jail for stealing $10 and 7 years in jail for stealing a walkman.  He's been home for a year now and I pray he finds some peace and happiness.  He's what's called a MICA patient.  Mentally Ill Chemical Abuser.  He's an addict and falls off the wagon. His parole officer violated him a bout 6 weeks ago and he's going to be going away for 45 days to rehab.  Thank God not back upstate.

You see I'm all he has.  I ask his sisters to keep in touch with him but they have their own lives.  He's met women since he's been home but so far he hasn't found someone special.  The other night he went out and had a good time, the woman he says, is just a friend he met in the hospital.  You see not only does he have his mental health issues, he suffers from loniliness like me.  I want my baby boy to find happiness and have a real chance at life.  He is one of the reasons I'm not ready to leave this earth. I don't want him to be alone, if I die he will be.

Monday, September 6, 2010

I am Blessed

I was feeling good today. But lupus the devil himself has to always remind me he's around.  But of course I was feeling good so I over did as usual.  I went to the store, it was nice no one was in there except for a few getting nothing but hot dog, hamburger roll, soda and such.  The lines were empty.  I brought the stuff for my bread pudding. I came home, I made the bread pudding, i cut up an apple, I put coconut, raisins and pecans in it, I put it in the oven cleaned up after myself and washed my grapes to put in the freezer. I went downstairs to change my clothes. I think in total I went up and down the stairs about 6 times.  Now I'm worn out, doesn't sound like much, huh?  Well for me it feels like I was out in the garden turning the soil.

I know I must complain a lot.  I don't mean to.  I am grateful to be able to walk and prepare my bread pudding.  I'm thankful for my beautiful children who can sometimes be a bit trying, but in all are good people. I'm thankful that they want me in their lives.  I'm thankful for the friends that find time to call me every now and then and the family that thinks about me too.

I'm thankful that I lived the life that was given to me and that I got to experience the things I have good and bad it was my life and I was blessed with the days I lived.  I am ever so grateful for my writing abilities. Writing has always been therapy for me.  I'm thankful for my personality that allows me to see the glass half full most of the time.  To have the ability to suppress the anger and sadness I have sometimes and smile like the world is full of sunshine and 70 degree weather all the time.  I have a roof over my head food for my belly, even though I can afford to miss a meal or two. There are those who never walked, never saw, never loved.  Those who have died young, suffer mental and physical abuse.  Those who known hunger more then full bellies.  I know I've been blessed and thank God for all that I have, had and for the future he offers me.

I am human and do fall victim to venerability and weakness that makes me mad, sad and scared.  But I never forget I am blessed.

Feeling Good

That's the thing about me.  I always thought the people around me were crazy, but now I realize it's me.  I am totally insane.  I was feeling down for the past week or so, and now I feel like I'm on top of the world.  Maybe it has to to with getting an interview for an apartment that is really nice.  I'm not going cause I know I won't pass the credit check.  But man it is a nice building, brand spanking new.  I got approved for the health insurance through the health care reform bill.  So I'll be getting better care.  And yesterday my mate was in a good mood.  We fixed a good dinner, talked and laughed a lot, watched TV and she didn't get nasty not once.  My son called and he had a wonderful evening he said it was the best night he ever had.  he went to a play with a young lady and she took him backstage, where the cast signed his playbill then he went to time square and was seduced by the lights, glitter and excitement.  That made me feel good.  My oldest daughter sent me her resume to fix up and that made me feel good cause I still have a bit of skills she needs me for.  Also I have someone following my blog. So I had a great day and today seems promising.

I'm going out, ha, ha to the grocery store only because they aren't taking on-line orders on the count that it's a holiday.  I want some bread pudding I'm going to get some heavy cream, coconut, raisins, pecans and now since I have to go to the store I'll get and apple for it.  Shhhh! I know I don't need it but food is my comfort and those damn steroids keep me hungry, I never get filled.  I pray that when I get a new doctor I can get down to 6mg of steroids again.  I did good at that level it was when I got to 4 that I got a flare.  As wonderful as my current Rhuematologist is she won't take chances.  Okay I know there are better choices to eat, I'll pick up some grapes while I'm there and freeze them those are satisfying and not fattening.

I'll share some more later. For now I'm going to enjoy feeling good, it doesn't happen too often.