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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, October 9, 2010

Me Verse Lupus: Crack addiction and Lupus become a reality

Me Verse Lupus: Crack addiction and Lupus become a reality: "I had a good night last night. Sleep pretty good, once I went to sleep. I took 1 mg of Lorazpam. Up early checked the emails, FB. Didn't g..."

Crack addiction and Lupus become a reality

I had a good night last night. Sleep pretty good, once I went to sleep.  I took 1 mg of Lorazpam.  Up early checked the emails, FB. Didn't go to twitter yet, not sure if I really like it yet. I have a busy week coming up.  Monday my daughter needs me to stay with the kids because of holiday. No problem I haven't seen them since last month.  Wednesday I go for the Echo in the morning and that evening I go to another Lupus Seminar. Then Thursday I met my new Rhuemotologist. Still didn't get the bill for my medical records. I'm going to have to find time to go there and find out what's going on.

Still didn't get reimbursement check.  I called Access-A- Ride  and the woman in the reimbursement department was nasty as hell.  They say you should receive your check in 4 to 6 weeks it's been 9.  My mate sent receipts after me and she received her check.  I should of spoke to her supervisor, but I'm trying not to be a bitch.  I guess the woman who took my call is mad that she has a job during these difficult times. Damn she was nasty, when I questioned her about dates she didn't mention she said, "this is the last time I'm going to tell you." What kind of shit is that for a professional dealing with persons with disabilities.  Okay I'm taking a deep breaths and exhaling.

I often get disappointed when I deal with people who work with the public and have such nasty attitude, when it's not warranted.  She should loss her job for being nasty and get a job in a dark cubical in the back with no phone and no interaction with the public.  She should enjoy that kind of job better, this way she can beat up on herself.

I always subscribe to the theory that you treat people the way you want to be treated.  So what does that tell me.  I should call back up on Monday and be a bitch, right? Nope, not me I'll just suck it up and be the one to curl up in the corner and wait for my check.

So where was I. Oh yea I got the apartment in the project and the new job as a bookkeeper in the Home Care Agency.  My mother gave me some furniture, the mattress. I brought some second hand items and made a home.  Rent-A-Center became my life savior.  That's where the TV, the girls bunk bed and living room furniture came from.  It was a two bed room apartment.  The kids had the bedrooms and Mr. 23 and I had the living room. 

Far Rockawy is a peninsula, border by the bay on one side and the ocean on the other. The air always tasted of salt, and there was always a cool breeze in the summer.  In the winter the cool breeze was bitter cold.  Traveling to and from work was almost a 2 hour journey.  I would leave at 6:30 am and not arrive home until almost 7 pm.  Mr. 23 would get there before me and prepare dinner for the kids.  I would be tired and usually eat, shower and go to bed. I'm going to call Mr. 23 father now.  Father helped them with their homework, we both attended parent/teacher night. Things were good.  We had a 'normal life' for once.

Even my son who was having difficulties in second grade was doing okay.  You see he was disruptive in class and the school suggest he have a psychic evaluation.  He was diagnosed fine, high functioning and no problems. Here in Rockaway, just as in Jamaica, he associated himself with the wrong crowd.

When I moved back to NY he went to the neighborhood school.  He was put in the first grade with children that were left back and trouble makers.  These kids, also lived down the block from us.  When my son who in school in Jersey was a star pupil, now he was just a statistic.  I didn't know I had rights and could of pulled him from that class. All my teaching him to reading, writing and arithmetic, was all for naught, because the educational system screwed him. He had potential but he followed the crowd and wanted to hang out. I was always on his back, but he keep doing his thing.

The girls were fine. They had their room that I use to try and set up nice a girly and tell them to clean on Saturdays that took all day.  While they were doing that I would be cleaning the apartment and talking on the phone with my sons' father in jail.  Father never knew.  I don't know why I use to talk to him. I knew he wouldn't be free for another 20 years or so.

After the apartment was cleaned I would cook and we'd play board games and watch TV as a family.  Our apartment was the Kool-aid house.  I would let their friends hang out so I knew where they were. They were good kids.  I use to have them get together on Saturday morning and try and teach them black history, but they had enough of school during the week to sit in my classroom.

Eventually my mother gave me her car, our aunt gave her our cousins' car after he died.  I loved that old dodge.  Traveling became easier. Now I could shop at different stores, get home earlier, visit my mother more often. Take the kids out on the weekends, parks, movies and such.

Having a car didn't stop me from being tired and some weekends I would just lay in bed doing nothing.  My hands would swell up and hurt.  I couldn't use them, I would take Tylenol and the doctors would tell me it was arthritis.  I use get my rashes, but that was normal.  Father use to take care of me, he would cook, clean and take the kids out so I could rest.  At night he would expect sex, as much as I enjoyed sex and a much as I was a freak. I was just too tired to have sex, even after resting all day.

He got frustrated and started going out and staying all night.  He wasn't making any money to help with the bills and really there weren't any except the rent and phone bill.  Car repairs sometimes.  But like I did in Jersey City I would give him my money to try and "flip".  I believed in that man more then he believed in himself.  I was blind to his addiction for a long time. I know he was never with another woman, he didn't have time he was chasing drugs.  A woman I would of been able to handle.

This one time he was gone for like three days. When he came home he had this bandage around his ribs and said he was in some accident and was in the hospital.  We didn't have a phone so he couldn't call.  I helped him take his clothes off, helped him in the shower.  Feed him and tried to make him comfortable.  That night in bed he start humping on me.  The bastard played me again. There was nothing wrong with his ribs he was out on a binge smoking and drinking.

Just the beginning of his crack days and the symptoms of lupus surfacing.

Friday, October 8, 2010

Me Verse Lupus: The better part of the past.

Me Verse Lupus: The better part of the past.: "Just got out the shower. Spent the day making 2 birthday cards. Are they nice? I think I'm reevaluating making cards for a business too tim..."

The better part of the past.

Just got out the shower. Spent the day making 2 birthday cards. Are they nice?  I think I'm reevaluating making cards for a business too time consuming.  I like using glitter designing them and adding my little touches.  I just make cards for my love ones.

I just want to go to sleep now and wake up next week.  I am tired and down in the dumps again. I feel fine just that nagging headache.  

I started writing  last night but Greys' Anatomy was about to come on.

 I just got out of bed.  I had  honeydew melon juice, a lamb chop, rice, broccoli and carrots and a sandwich to eat yesterday.  I went to bed hungry, didn't want to go upstairs to fix anything to eat.  My mate wasn't home so I could do that. If she was here she would literly bash me until I eat something.  I physically feel okay this morning.  I have to go to a funeral this afternoon.  My mates nieces' mother died and they need me to help get them their on Access-A-Ride.  They're just going to view the body and return home.

Back to my life with Mr. 23 years.  We got this apartment in Jersey City, poor, run down town.  These people burned this avenue called Jackson when Martin Luther King died.  When I was there in the early 80s' they still hadn't rebuilt the street, yet they renamed to to Martin Luther King Dr.,  (the locals still called it Jackson Ave.)  There were I think 6 families living in our the building. The landlord lived under my apartment and her friend lived above my apartment.  When she had the exterminator come, she would only have them spray her apartment and the apartment upstairs. Guess where the roaches hid?  The other family upstairs had a bunch of kids, teenagers.  They use to eat out the garbage because they were so hungry. The first time I saw someone eat out the garbage was when we lived in the hotels.  This man went through the garbage in front of this restaurant and filled a tin pan with food and sat against the wall and ate it.  As I tell my story there were many nights that my children and I went to bed without anything to eat, but we were never hungry enough to go through the garbage.

Back to Jersey City, the people that lived across the hall were my friends, only her man use to beat her ass.  I spent many nights walking her to the ER.  The other family on my floor were cool, nothing special just regular people. The family next to the landlord, she was my friend too.  She had a four year old girl, a two year old son and a set of one year old twins. Her man also use to beat her. She use to litterly run out her apartment and hid in mine.  She would leave the children. This one time it was raining and he put the children out in the rain to smoke her out.  She yelled at the kids from my window and this mother fucker came running upstairs and tried to break into my apartment.  I was nine months pregnant.  When Mr. 23 years came home a few days later he confronted this, woman beater and he bitched up. A few weeks later him and his cousin raped the four year old girl. They gave her shyphlis. They took her children from the mother and locked him up. This sick woman asked me for paper and pen so she could write a "love" letter to this man. Unbelievable, but true.

I moved home with my mother in a small room with my three kids. My sister, her husband and their three kids lived there also.  Neither of them worked or supported themselves. I use to get so angry when I went shopping and see them eat up the food and drinks I brought.  I didn't say anything and my mother would tell me it's okay. Today I see things different we are family and we take care of each other, or should.

I complained about this to Mr. 23, at the same time I was annoyed with Mr. 23 years, he wasn't doing anything to get us out of this situation.  I started going to school.  I took out a loan to take a computer class.  No computers at night so I just took a clerk/typist class.  My brother was working at another school and was angry I didn't sign with his school so he could get the commission.  This school was closer to home less traveling.  This was a mistake, I created a student loan bill for a course that taught clerical work. Waste of funds that I could of used to get a degree. Well maybe not I did have the skills to carry me through out my employment career.

This was it I was going to break it off with Mr. 23 years, then he got hit with a motorcycle and broke his tibia bone.  He was told he would never walk again. First time I saw him cry, doctor asked, 'you going to cry in front of your lady,' he said, 'this shit hurts, hell yea.' I couldn't leave him then.  When he was released from the hospital he went to live with his cousin. They drove his aunt crazy, all day they would smoke reefer and free base. (Before they sold crack, they use to cook cocaine and smoke it.)  I was getting plenty of cocaine for thirty dollars.  I would give him some, I didn't know he was smoking it.

 We moved into his step fathers' basement.  Kids went to school in the area, I was active with the PTA. I was a school mother, always on site.  There was this woman who was very political and community active she offered me a job. I started working for Manpower, I was a job developer.

Mr. 23 years leg was just healing.  I got him a job, he towed rubbish from buildings that were under construction.  He met this guy there and they became good friend.  (Later this guy saved my life.) Mr. 23 became strung out on the base, now he was getting it ready made, crack. His shasty behavior just started to begin.  One night him and his brother had this guy over in the basement, when the guy left I went into the kitchen area, they had all this white powder on the table.  I was so mad that they left the baking soda all over for the kids to get at.  I brushed it off onto the floor.  It wasn't baking soda, it was a mountain of cocaine.  All Mr. 23's brother could do was smile.

 I  moved back to my mothers.  I got a job in Manhattan working for an answering service.  (I met folks like Alan Payne, Lillian Thompson, Jackie Harry and a lot of actors that were extras.  I met Danzel Washington over the phone. His bill was over due by three months.  I received his call, when he called to question the bill.  Very nice man, he wasn't famous as he is today, in fact I don't think I even knew him, only that he was the lead in the play Dream Girls.)

Life was pretty good.  I had a job I enjoyed, the kids were in school and daycare. Mr. 23 was doing his thing.   I got offered a job in the home care agency. Making twice as much as I was making with the answering service.  I would have good benefits for me and kids.  Then I got called for a project apartment in Far Rockaway.  Mr. 23 asked if I wanted him to move with me.  I let him, a mistake.  But I loved him and I really believed that we would work.  We had good times, hard but nothing compared to what crack was going to do to our lives.

Thursday, October 7, 2010

Me Verse Lupus: I was busy, like I had a real life.

Me Verse Lupus: I was busy, like I had a real life.: "It's after 11pm. I'm tired but feel like I'm high on cocaine. I got the jitters, my mind is racing faster then the speed of light. I just t..."

I was busy, like I had a real life.

It's after 11pm. I'm tired but feel like I'm high on cocaine.  I got the jitters, my mind is racing faster then the speed of light. I just took 1.5 mg of Lorazapam  and still awake.

I met the cardiologist yesterday.  I think I'll have an affair with him.  He was pleasant, compassionate and just as focused as the pulmonary doctor I meet Monday. He explained that he can't start me on medication because they don't know what my lung and heart pressure is.  During the Cauterazation they will be giving me meds to see which ones suite me.  First I need an echo cardiogram. I could have had it of today, but no co-payment.  I don't want to ask my mate for anymore help.  She gives me such dirty faces, and sucks her teeth when i ask for money. let me leave it alone, I don't want to going there. So I'll have the echo next Wednesday, hopefully I'll have the Cauterization within two weeks from today.  This doctor asked me about taking Lasix and water pills.  I told him that the doctors had me stop taking them because my potassium levels were always low, despite the supplements I take.  He explained that it was the steroids that deplete the potassium. He asked if I felt good when I took the water pills, I told him I don't know what good is.  I haven't felt good in so long.   He told me, what I thought may have been an illusion, or a great sales pitch at least.  He said, I would feel better soon.  Can you believe this?  He said there is no doubt that I have COPD, IDL, PF and PH. But he believes since both my mother and father had heart problems, my major health issues may be my heart. 

Okay the heart, if that stops working that it, lights out forever.  But knowing what is wrong and being treated for it, is hopeful. Hope that maybe I will be able to live a little. Maybe using the oxygen less when walking. I still have to wait, but the wait is short now. I just want to do this test and move on to the next stage.

I went to the NYC Hospital Tour last night. As always they give you the assress to the hospital and not where the seminar will be at.  Access-A-Ride let me out in front of the hospital. I found out the seminar was around the corner.  I walked, got cramps in my legs, pains in my chest and tears in my eyes, I made it.  I called Access-A-Ride and asked them to adjust my pick up location. No problem I was told. Hump!

I assisted this lady with the same issue with Access-A-Ride. That done we went in and helped our selves to baked ziti, string beans, rice, chichen in gravey with vegatables.  There were cut mellons and pineapples and cookies.  I had a coco-cola, well two.  I use to be addicted to the stuff.  Stopped drinking it regularly about 6 years ago. Loss weight too.  I just couldn't resist.

There was a Dr. Beckerman who is conducting surveys, with the Yeshiva University.  She is trying to find  out, what we as lupus suffers/survivors are feeling.  What are we going through. In addition , they are working to educate doctors in how to reconize Lupus symptoms.  I know, that if the doctors that I saw years ago knew the right questions to ask, I may have been able to treat this lupus earlier in my life. But that's neither here nor there, the past is past, and I am trying to move on.  But at least some other poor luppie may benifit from this training.

There was a Dr. Mackay who discussed the strides they are making in research.  Speaking of our anticipated Christmas gift hopefully. Then the head doctor of Jamaica Hospital Ophthalmology department spoke to us about our eyes. He explained that doctors takes their lupus patients off and on plaqueline in an effort to save their eyes. He said damage from plaqueline, if discovered early, is reversable.  He explained that any problems that may arise in the eyes is very painful. We can't see it by lookinf at our own eyes it must be done by an ophthalmologist.  Symptoms are dry eyes, sores on the lids sometimes inside.  Also cataracts develope as a result of steroids. Basically we need to have our eyes check at least every six months.

When the meeting ended, several of the patients swarmed the buffet and took the food home.  One lady even brought her own tuperware. The program was video taped and should be aired on the NY Lupus Foundation web site.  If they got me in any of the shots I will be the baby elephant.  Doubt if I'll be in any shots though.  I felt left out. I wasn't people spoke to me, I'm just lonely and wanted conversation.

Any way I went outside and the lady I helped with Access-A-Ride was still there.  She called them and they told her the bus was going to come to the new address.  I called and they told me that they weren't coming to the new address, that I would have to walk to the other side of the building. The lady and I walked, entered the ER through the ambulance entrance.  We walked through and no one stopped us. We made it to the front of the building and my car pulled up.  The lady however missed her bus.  I felt so bad for her. I was so angry, I cried of course.  Again, my calves cramped up, and my chest got tight.  If I had money I would have gotten taxi authorization back. But as it was I asked my mate for $4.50, $2.25 to get there and $2.25 to return.  I didn't have a penny more.  Had I missed Access-A-Ride I would have been stuck.  I guess I would of had to walk, I damn sure wouldn't have called my mate. When we met she told me she would take care of me. Funny how things change. When we met I was working and making good money.

Now it's 12:30am and I am till wide awake.  I can't turn the TV on it others her. So I'll read my nook and see if I can get some sleep.

Monday, October 4, 2010

Me Verse Lupus: It was love at first smile

Me Verse Lupus: It was love at first smile: "I arrived home from the doctor about two hours ago. My doctor, handsome that he is, and when he smiles, I feel like I'm in good hands. His ..."

It was love at first smile

I arrived home from the doctor about two hours ago.  My doctor, handsome that he is, and when he smiles, I feel like I'm in good hands. His hands that took my blood pressure, checked the swelling in my legs and gave me my yearly flu shot. He checked my breathing level and said it was good.  He listens!!! Yes he heard my fears and questions.  He confirmed that I do have pulmonary hypertension, but he can't treat it until I get the heart cauterization to see what medication will help me.  He said I'm not going to die tomorrow!!! Which I was afraid of, yea, yea I know this morning I said I was ready to give up. I lied, I want to live and live looooong!  He refereed me to a cardiologist, who I will see me tomorrow.  I do feel bad about canceling the doctor I saw Friday but, he didn't smile not once and I didn't even feel comfortable asking for my prescriptions.  My new doctor is good.  When his assistant would interrupted him, he remembered what he was talking to me about.  He didn't lecture me or speak to me like he was disgusted with my weight.  He just gave me a script to go to rehab.  I think I'm in love. He's what a doctor should be. Patient, through and compassionate.

I know I said I would tell more of my life with Mr. 23 years but it will have to wait.  I have a birthday card to do.  I want to finish my family newsletter and look into this rehab facility.  I guess it's a good thing I don't have time, because tomorrow I will be out and on Wednesday I'm going to the Lupus conference on lupus and your eyes.  I have a life for a few days. Wooowhoooo!

Me Verse Lupus: Just a regular day to speak of

Me Verse Lupus: Just a regular day to speak of: "I was lazy yesterday. I layed around all day watching movies. I slept all night, well I did get up several times to go to the bathroom and ..."

Just a regular day to speak of

I was lazy yesterday. I layed around all day watching movies.  I slept all night, well I did get up several times to go to the bathroom and I'm up this morning at 6 am.  I could have continue to sleep, but I'm going to see new pulmonary doctor.  Oh boy here we go again.  The thing this time is, I'm sure he's going to say he doesn't take my insurance.  He was on the list of doctors 2 weeks ago but wasn't on there on Saturday.  So I'll be there before 11am and I'll be waiting until 1 pm for my ride back home. I'm taking my nook and ipod to stay busy.  And guess what it's one of my favorite days, rain, hard rain and I have to go out. I do so love the rain, especially fall rain, it has a chill in the air that makes curling up in bed so comforting.  But I need to go out.

I said no more crying, whining or feeling sorry for myself.  I was in that mood on Saturday.  I cried all day long, all you had to do was say boo. That doctor put me in that mood,  having to wait another month and half to before he would even schedule the heart cauterization.  This delay will cause the pulmonary hypertension to progress and cause more damage to my lungs.  I was feeling tired, tired of fighting, tired of hoping for a miracle.  I was having that feeling of just wanting to hide in my sleep and dream where I can live a normal life, only my dreams are anything but normal.  I see all my family in my dreams, my mother, grandmother, brother and different aunts and uncles who have left this earth long ago come to visit. And all kinds of crazy things go on.  Right now I can't even remember one.

I guess I need to do something. Get out and see people, talk to some one about something other then my health. 

I know I left my pass story with Mr. 23 years up in the air.  When I come home this evening I'll write some more.  Time to shower and dress for this appointment.