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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.

Thursday, October 21, 2010

Me Verse Lupus: The heart of the 23 year relationship

Me Verse Lupus: The heart of the 23 year relationship: "A second posting for the day. My mood is a little better so here I am. My HS friend called me, my brother-in-law called me. I was scared a..."

The heart of the 23 year relationship

A second posting for the day. My mood is a little better so here I am.  My HS friend called me, my brother-in-law called me.  I was scared at first when he called, but he wanted my opinion.  Boy did that make me feel good.  I got a comment from a luppie friend on FB telling me that I'm an inspiration. My brother-in-laws' niece, who is also my niece  by their marriage, shared some music with me on facebook and told me I was sunshine in others lives and her nephew's woman has lupus and she would like me to her, she thinks I could help her. My son called and he sounded disappointed that I wasn't coming, but he seemed to understand.  He said they will try to set up a visit for us here in the City.  I got my Writer's Digest magazine today and Greys' Anatomy is on tonight.  What simple pleasures to make me feel better. I wish I made arrangements to go to the the Lupus tour tonight.  Many of my twitter friends would be there, I hope they will be next week too.

I'll tell some more of my life story.  Far Rockaway was a nice place to live for me. I was in the project that wasn't dangerous. The one across the street they use to call Viet Nam. The kids use to blow the doors off with M80's and jump people at night. Not to mention is was full of crack heads and dealers. My side was cool. Yes in the winter is was cold, what they called brick. The wind whipped with specks of sand from the beach. In the summer there was always a cool breeze off the beach, which is where we spent most of our weekends. I was the kool aid mom remember.  I always had sandwiches, juice and chips on the beach. The kids in our building would follow us to the beach most of the time.  Mr. 23 would join us after his day of 'working', that's what he called his hustle.  I would often have a rash somewhere on my body and be extremely tired after.  But that what it was always like when I went to the beach. It wasn't unusual and I didn't complain, why should I? I was allergic to the sun, I got a rash. Yea I was tired too but I just thought jumping the waves wore me out. Thinking back now I was litterly drained and the next day I usually stayed in bed.  Father usually took good care of me, he would cook, clean and take care of the kids and me when I was tired.  Later he would expect sex and get pissed when I was still too tire to comply.

If we didn't go to the beach we went to Prospect Park in Brooklyn, to the movies. Some times we would go to work with father. He would sell his products, fill the car up with  his products and we would sit in the car waiting for him to come back with a few dollars, and we, hoping when he returned, it would be time to go home. Once and a while he use to park us by Red Hook projects and we would sit out there for like almost an hour.  He was there coping drugs, and getting a hit or two.

He tried real hard to make money and sometimes he did do good.  But he was always fighting that crack. I couldn't understand how it had him so controlled. Nothing I said would penetrate. I told him he wasn't god, that he may as well eat pork cause that crack was doing more damage. He was always a small man, after that crack he was smaller then a skeleton.  He would come home early in the morning and want to have sex. I didn't want him to touch me. We use to fight, one night he had me pinned to the floor and I picked him up with my legs and threw him across the room.  Back then I was like 150. If I came home from work 15 minutes late he would take me in the bathroom and check my panties to see if I had sperm in them. Questioning me why I was late, where was I.  It was the crack speaking.

Once I came home I was going up stairs, I never took the elevator I lived on the first floor, as I was walking up this crackhead from the 3rd floor was walking down.  She once offered to suck father off for a quarter. When I walked in, father was dancing in the living room, the music blasting, George Michael, Wham was probably playing, the house was clean perfectly. I had to go to the bathroom and sat on the toilet.  I could smell the faint smell of crack, when I looked down in the garbage there was a pipe, still warm  He told me it belonged to the woman from the 3rd floor.  He let her come in to use the bathroom.  He thought I was so stupid, why would she use our bathroom when she just lived two floors up. Why would she smoke her crack in my apartment. Come on.

I was isolated then also, I had a car and could go anytime I wanted to but I had the kids.  I didn't know fully leave them alone.  I took a second job, father was suppose to be there to watch the kids at night.  There were many nights I came home and they were alone.  There were many nights that they went to bed hungry because he didn't come home with money. Because I stupidly gave him my money to double. I use to steal from the petty cash at work, since I was in charge of it. Or cash an outstanding check.  The kids would miss days from school because I was too tired to get them ready in the morning. No matter how tired I was, or how much my hands ached I went to both jobs, trying to get my head above water while he smoked all my efforts away. 

Once there was a bad snow storm, I was on-call for my job.  I couldn't get coverage for the clients, some where bed bound and couldn't get out the bed to fix themselves something to eat, wash or go to the bathroom.  The beeper was ringing non-stop.  My nerves were shot. That Monday I was broken out all over my body from my scalp to the bottom of my feet, even the palms of my hands. The doctors couldn't find anything wrong and said it was my nerves, stress from the job.  A few weeks later I got a virus and they gave me antibiotics that made me sick.  I felt the drug crawling through my skin.  I broke out again all over the same way.  I didn't know what the drug was, so some years later it will happen again.

Fathers' friend the Man moved in with us.  He was a hustler also and Father kept talking about how much money he was making and he would help us out.  He gave me a few dollars, brought me a pack a cigarettes here and there and he would bring the kids bags of candy.  But he was my brother, known him as long as I've known father.  So he was welcome in our home.  The same as his brother.

Father and I were sex freaks and planned a threesome with his brother.  But it didn't happen the night we tried because they too high. The next night father wasn't having it. The brothers were close.  Brother was always with us to bring the new year in. The three of us would sit up getting high, talking and laughing.  I could always count on brother to take my side in any dispute father and I had. The nights we spent parting use to end up with the two of them arguing.  It would get to the point where Brother would say give me all my stuff I gave you. Loyal to Mr. 23 I would gather brothers' books  and the mirror and what ever else there was that he gave to us or left at our place.  Then they would go out side to physically fight each other.  Then come back bosom buddies.   They probably would go out to get high.

After while, brother hadn't been around much. Father kept telling me his brother was sick and he was dying, but wouldn't tell me what was wrong.  One Thanksgiving Brother was in his mothers' house, up in the bedroom in the dark,  father told me to go up and see him, Brother told me he had aids.  I asked him, so you're just going to lay up in this dark room and die. He got dress and came and stayed with us.  I was braggin how he stopped getting high  while he was sick and his wife took such good care of him.  Father and the man laughed at me. They said Brother and his wife were getting high up to the day Brother went into the hospital. Brother didn't know who we were in the hospital he was coming in and out of it.  Father ran to the mens' room and I could hear him crying.  He came out and we hugged while he shed the rest of his tears.

Father lost his brother, grandfather, aunts, uncles and  many friends while were together.  I lost my brother, mother, grandmother, aunts, uncles and friends also.  We supported each other and cried with each other over lost family.  This is the sad part of a long time relationship ending.  The memories that we shared privately are only remember alone now.

Me Verse Lupus: Today is an Ouch day!

Me Verse Lupus: Today is an Ouch day!: "I was sleeping by 10pm. I didn't have enough energy to go up stairs, and then fix something to eat. So I ate candy and chips, oh I did hav..."

Today is an Ouch day!

I was sleeping by 10pm.  I didn't have enough energy to go up stairs, and then fix something to eat.  So I ate candy and chips, oh I did have a slice of cheese.  My mate would of said I was lazy. I have to remember to bring the frozen grapes down.  I knew I would be hungry so I took 1 mg of Lorazapam, a Clairtain and 2 extra strength Tylenol and it made me tired.    I woke up once during the middle of the night to pee. I slept with my feet out the covers holding the quilt so I wouldn't knock it on the floor.  My feet were cold, I hate wearing sock to bed, my toes like to have wiggling room, but I guess I'll need to, if I can't put my feet under the covers. I woke up at almost 8 am this morning. I slept good, in fact I could of slept some more, but no I'll stay out of bed.  I was suppose to go for a mamo today but they called and canceled.  I would of gone to the SLE Lupus Hospital tour tonight, but when the clinic called it was too late to make arrangements with Access-A-Ride.

I'm home alone for a minute, my mate and her mom went to Pathmark. Next Saturday they are having a dinner for their family coming from Florida.  My children were invited.  I hope they come but I don't think they will.  My oldest daughter said she will see if she has the money to get here.  I know what she means, enough to take a taxi back home.  My youngest daughter doesn't know if she will have to work or not. So we'll see.  Right now I don't feel like being bothered with anyone, I just want to sleep, read, watch TV. Eating would be nice but I am tired of chicken, broiled, baked and fried.  some beef stew would be good, or some stew chicken made like my grand mother use to make would be nice.  She use to soft fry the chicken and put it in a pot of gravy and let it simmer for an hour or so.  Then eat it over white rice.  Hummmmm! I don't like cooking when my mate is around.  She hoovers and it drives me crazy.  She treats me like I don't know what I'm doing.

I'm really in a I don't give a damn kind of mood. I'm locked in my shell alone again, but I'm happy to be alone. it's one of those days that just hurts  Here's a poem I wrote about it hurting once before.


Lost inside a shell,
sometimes called hell.

Gorging on a diet of bullshit,
now I’m torn and sick.

Empty praises, false adornment,
tricks of torment.

Right from the start,
my blessings, a bruised heart.

Gifted with endless pain,
driven  madly insane.

Hiding inside a shell,
sometimes, called hell.

Fueled by greed,  affection I need.
Constantly,  please.

I gave the best of my life,
 he took another wife.

To her he did wed,
me he took to bed.

I don’t belong here, there or anywhere.

Disappearing inside a shell,
sometimes called hell.

I believed in her affection,
thinking, my heart would have protection.

Like a man it’s the same,
full of 'illussional' game.

When she gets a call from Bacardi Le’mon,
it’s me left alone.

She lives her life and I live mine.
never shall the two intertwine.

 Consumed inside a shell,
sometimes called hell.

Loneliness won’t you leave,
I want to breathe.

Ignorance is bliss,
spawn three from thy pussy lips.

The children are grown,
and want to be left alone.

Stroke my delicate ego,
like a long ear beagle.


I got a boo boo.
Oh! Boo who who?

Crack that shell,
sometimes called hell.

Wednesday, October 20, 2010

Me Verse Lupus: I'm being selfish

Me Verse Lupus: I'm being selfish: "I not going to let myself drown anymore. I've been swimming in this deep ocean of despair for months maybe even years. I've been blaming i..."

I'm being selfish

I not going to let myself drown anymore.  I've been swimming in this deep ocean of despair for months maybe even years.  I've been blaming it on lupus, my lungs and everyone else.

It was me who jumped in this murky water and refused to wear a life jacket or to climb into the rescue boat that was offered.  I had enough of this bitter salty sea, that runs deep and fierce with my tears. 

I caught a nasty virus called unhappiness, it spread like a plague. Infecting healthy untroubled souls with a fever of misery.  There were illusinonal cures, spirits in glasses, prescriptions promising to heal the sadness.  Even being folded under the cover and sleeping wouldn't restore the damage that ugly, nasty virus contaminated my enviorment with. 

I found a cure though and it's just a simple, "Fuck you and the pale horse you rode in on." In order to live you must have a life to live and I'm going to live. Day after day I am berated with pick that up, move that, don't you know that goes there even when I'm sleeping, don't let the covers fall on the floor.  I am so tense and nervous I don't know if I should sit, stand or walk. What was acceptable yesterday is no longer acceptable today. I'm called lazy because my fatigue must be in my head, because I can sit at the computer.

Many years ago my brother called me a fuck up and it stays with me to this day.  As I live to this day the words still haunt me. But no more! I'm not going to be stressed. No more! I said! That's how I feel right now but like Mr. 23 years use to tell me, 'feelings come and go.' the most honest thing he's ever said. Cause tomorrow I my be sick with this nasty poison.

So yesterday I went to the pulmonary rehab. Meet the staff including the doctors who examined me to see if I was a candidate for their program.  After the examination the doctor declared me healthy to participate in their gym. I go back next week for a stress test and I guess then I'll start exercising.  They say I will learn to breath better and have more energy. They expect me to lose 20 pounds in a year. FUCK THAT!  I gained a 100 pounds in two years.  If we go by years I expect to lose 50 pounds a year. If I could get off the steroids for a  month or two I could lose that more rapidly.

They had me walk up and down this hall for 6 minutes.  I did it very well, I believe, I only stopped once for rest.  My oxygen level dropped down to 85.  The nurse said I walked 8 meters. I know my legs were hurting and I'm still tired today.

After I finished at the gym, Access-A-Ride took me over to see the cardiologist.  He said that my echo looked good.  There was no indication of my right artery being in large, no CHF and he thinks it's unlikely that I have Pulmonary Hypertention.  He's still wants me to do a full heart catheraztion because he believes there's a lot of fluid in my lungs and heart. He says my S.O.B is probally due to my weight.  So my insperation is to lose weight and drop this other person I've been toting around. Then I should feel better.  I'll still  have lupus, which at the moment is only causing minum discomfort.  I still have the headaches in the morning, but Monday I go for an MRI and MRA, which will probally show nothing. The swelling and achiness in my hands and knees have been a part of my life forever. So if I lose the weight, the COPD and IDL is minumum, then I may be able to come off the ozygen and have a life again.  With the weight loss my blood pressure should be regulated so I'll need less meds and maybe I can go in remission and stop taking the cellcept, plaquline and steroids.  Then I can start living agian.  My lips to Gods' ears. Sounds like I'll have another chance at life.  Maybe I'll be able to go out and shake my stiff ass on a dance floor and maybe have some hot, freaky sex again.  Don't pinch me if I'm dreaming just leave me alone.

The highlight of my day out yesterday was while waiting for the Access-A-Ride home I had a turkey burger with cheddar cheese, fired onions, lettus, tomatoes on a toasted bun. I had french fries and a nice kosher pickle. Shhh! I know I just spoke about losing weight, but a least it wasn't beef.  I did drink a coke soda.  It has been a  long time since I had a turkey burger, let me tell you it was hevenly, I savored every bite.  I think I even had and orgasm, I think cause I forgot what they felt like.  I'm planning on having another one when I go back to see the cardio doc again.  The turksy burer that is. Let me ask you, the onions I asked for were fried but they call them sautated.  Aren't sautated onions just heated enough to soft and fried onions are dark brown and crunchy.  Why? Why do waitress and short order cooks want to call them sautated, does it make them sound more classy.  I like them both ways but I prefer fried.

They are having family day at the rehab my son is in this.  He wants me to come.  First of all it cost $54 round trip, not too bad if I had the extra money to go.  Second it's a two hour ride to the place and two hours back home, on a bus.  You know the ones with a little stinky closet with chemical smelling tolites. Am I being selfish to not want make that trip?  I support him trying to get clean and sobber.  But he's a grown man, 32 years old.  He spent most of his life in prision.  He came home and got himself in a program with a studio apartment, things were going slow but they were working out for him.  He was the one who choose to drink alchol and failed the piss test.  He was fortuanate that his parol officer didn't violate him and lock him back up. I told him I didn't think I could make it and he beg, please try.  I told him my money was short, yet he still askes me to send him some money.  Is he selfish, does all he care about is his needs and wants?  He's 32 I was 33 when my mother died.  I no longer had her to pick me up when I fell.  I had to lick my own wounds and heal myself.  Why can't he do that? Did I cripple him?

So I call up to speak with a councelor.  I tell the person on the phone all that I just described and this man tells me. Your son really needs you to come and see him. It would help him.  I should really try. He fed me this heavy guilt trip like, it shouldn't be a problem taking a 2 hour bus trip with oxygen and a closet bathroom to pee in every 20 minutes or so, even if I don't drink anything. And then turn around and do it to get back home.  Comes to find out the person I was talking to was a patient.  So I wrote my son a letter and told him how difficult it would be for me to come and that I'm sorry, love him but I can't make it up there to see him. Am I being selfish?

Sunday, October 17, 2010

Me Verse Lupus: Just an update

Me Verse Lupus: Just an update: "I crawled out of bed after 8:30 am this morning. Not that I had an exceptional good night sleep. I've been having a head ache every morning..."

Just an update

I crawled out of bed after 8:30 am this morning. Not that I had an exceptional good night sleep.  I've been having a head ache every morning after not sleeping well for a couple of weeks now. I thought it was my allergies, maybe so.  I took the Nasonex for a few nights and the Claritin. When I started to feel better I stopped.  I took them again last night, about 1:30 am I was up and couldn't go back to sleep.  I tossed and turned.  My mate woke up and asked me what was wrong, she asked if I was in pain.  I told her yea, she asked where.  I told her the better question to ask was, where it didn't hurt, that was in my stomach. Every joint was humming. So I tool a Lorazapam and after sleep came and it came deep.   I'm up now, still a bit achy but I can handle it.

I miss writing my blog. Been tired but no matter how dedicate I am to writing about me I need to rest.  I went to the the new Rheumatologist, I like him too.  His memory is not as great as the Pulmonary and Cardiologist but he's compassionate. He's also good looking and young.  He put me back on Plaquline and he is sending me for an MRI and MRA of the brain to see if he can find out why I'm dizzy and get the numbing in my mouth.   I had an MRI before but not an MRA.

Speaking of which, I called my former clinic and asked about the medical records I requested. There was no answer, I left messages.  So I called patience advocacy.  I got a message about 5:30pm, after business hours,  I didn't hear my cell phone.  I called the next day, the woman was nasty.  It's becoming a norm for these people to be nasty to me when I call and question about my business. She says she didn't get any request.  I was on my way out the door so I told her I would fax a copy. Which I did.  I typed a letter with the records I wanted and they attached it to their request copy.  The woman says they don't do it that way it needs to be written out on their official request form. I asked her why didn't someone call me and tell me this. I made this request over a month and a half ago. I need these records for my new doctors, I told her this is for my health.  She says she'll pass the request as is on to the imaging service.  Unbelievable.

Okay back to the Rheumy, he works with two doctors that are specialist in Lupus research. They interview his patients and consult with him regarding their care.  He says they are top doctors in Lupus studies.  God is so good to me. I'll meet with one of them November 4th.

This doctor is far from my home. I had to take my Access-A-Ride to Nassau to transfer to another bus company (Able Ride) and do the same to return.  The Able bus on the return was right on time. Only thing was there was a lot of traffic due to screwed up traffic lights, train crossings and just stupid traffic because for some reason people just don't know how to drive in heavy rain. But it was okay I had 45 minutes to wait for Access-A-Ride.  I went and got a sandwich and a coffee,  How stupid of me getting coffee.  I sat under the awning eating and drinking coffee watching the people, rain and crazy valet parking drivers.  Time pasted quickly.  My bus was late and the coffee kicked in I didn't want to leave and miss my ride.  I called and from where they said my driver was I could make it to the bathroom and back.  The bus was an hour and 15 minutes late.  He had to pick up another passenger after me and I need to go to the pharmacy and put my prescriptions in.  The major problem was that it was Greys' Anatomy night.  I was dropped off at the pharmacy it was 7:50 pm and it was going to take a half hour for my medication to be ready.  I called my cab friend and asked him to pick me up in the half hour, he said he had a customer and said he would try and I said I would wait.  It took 45 minutes for my drugs to be ready and my cab said he was on his way.  I got home at 7:46 pm.  I showered, ate the rest of my sandwich and was laying in front of the TV just as Greys' was beginning.

My daughter called about my granddaughters' birthday on Saturday.  I told her I wasn't coming because I was hurt that my youngest grandson wasn't allowed to come because their parents were feuding.  We are all we have and I like it when we get together especially for birthdays.  I did end up going to see my granddaughter and even though it was just me her brother and mother. She was in the best mood ever.  She was happy and that made me feel good.  My grandson was a mess.  His mother gave him a new game for his DSIThis daughter refuses to accept that I'm ill.  She says she  knows what lupus is and I'm going to be fine. She ignores that I use oxygen and that I have lung involvement.  I asked her not to smoke, even though it's all the way in the back of the apartment, the smoke effects me, my breathing is getting harder.  I don't know how to deal with her.  She is doing what she needs to do, she just got a city job.  Which is great, and she will be able to take the classes she needs to get her degree.  I'm proud of her but she is so self absorbed I don't know what to say to her. 

I'll be home today and tomorrow.  Tuesday I'm suppose to go to the Oxygym, it a rehab gym with nurses to assist me in exercises that will help me lose weight.  I was going to cancel because I really can't afford $20 co-pay three times a week.  The nurse called and she's going to see if she can work something out for me.  We'll see. I also go and see the Cardiologist and hopefully get set up for the heart cauterization.  Then that's it for the week.  I was going to go the the next SLE Lupus Hospital Tour but it's in Staten Island, the subject is the Kidneys I attended this subject matter twice already and it's on Thursday, Greys' Anatomy night.  I need the rest. There are 2 more I will surely make the one on the heart.

I will write the rest bout my life soon.  Thanks for reading and I hope this update wasn't too  boring.