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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, December 9, 2010

Me Verse Lupus: I was the mother of gangsters.

Me Verse Lupus: I was the mother of gangsters.: "I've been having quite a ride through life for a few days. I rested on the 7th just didn't do too much. I woke up feeling really ..."

I was the mother of gangsters.

I've been having quite a ride through life for a few days. I rested on the 7th just didn't do too much.  I woke up feeling really good yesterday.  I went upstairs to plug up my oxygen to charge it for the day.  I was out of breath but not extremely like usual, I didn't have to stop and catch my breath, I was able to come right back downstairs. Yesterday I went to see the cardiologist. When the doctor came into the office he asked how I felt and I said to him, ''You told me you were going to have me feeling good and I feel good today."  He was pleased and said my heart is good.  I spoke to him about the rheumatalogist, I asked him if my weight was the issue for all my lung problems and he said it was not. I told him that she said, she didn't think I had lupus and he asked did she say what she thought caused my lung problems. I told him she thinks its' my weight, he suggest I speak with my medical doctor to help me find a new rheumatologist.

My son is in the ER, he told them he is considering suicide so that they will admit him.  All I can do about his circumstances is pray.  My biggest fear has always been of him walking the streets homeless and insane.

My mate didn't come home until after 12:30am I was up reading and couldn't go to sleep because I didn't know where she was. Mr. 23 years use to do the same thing.  I'm just a worrier, but anything could of happen, especially since she usually comes straight home on Wednesday nights. Anyway I was up until 2 am, had to take an Aleve to help me sleep. I had a eye appointment today but was too tired and canceled.  I spent the whole day in bed sleeping. Still tired but want to write about Mr. 23 years and the house. So here's some more of my life.

Before the car crash I was hanging out a lot, with C going to clubs and what not.   I went to this club on Jamaica Ave with this woman that was a bar maid. I was standing at the bar when this guy brought me a drink after we both got a bit tipsy he asked if I did coke and of course I did and I told him I had a car and we could go in there.  We go sniff some then we get out the car. I had on a dress, he leaned me against the car and ate me right there on the street.  The people were standing outside the club across the street. We thought the buildings were in front of were abandoned.  It was exciting trust me.

So me and this guy were hot and heavy, going to hotels and under the Whitestone bridge or where ever we could to fuck. We even did a manege toi'. Mr. 23 years found out about him and use to follow us with a friend of his.  When the affair was over I found  out that his friend talked him out of blowing our heads off while we were having sex in a parking lot near the club we meet at.  I know it was true because he had details he would only know if he was watching us.

I don't know why he had such a problem he was having an affair with that gorilla he married.  I found out and where she lived and one night when he didn't come home I went to the neighborhood and parked the car and acted like I was talking to someone on a pay phone.  He called me and came home that night. This woman also called my house saying Mr. 23 was her man. I guess he was he married her right.  Good for her, she can take care of him and he has someone to bury him. It was then that I got sick and the car accident happened.

At home was busy, the kids had their friends in and out. It would slow down when I got home.  I was hang out with C, the cousin girlfriend, by now she was the X. We were like family feeding each other, lending each other money and taking care of each others kids.  Mr. 23 was getting high again and the bills were out of control.  We would run out of oil and be with out heat for a few days. We learned that we could put diesel fuel in the tank, so we would buy a few gallons and warm the house and  take showers.  The gas was off for years, so I cooked on hot plates and I had George Foreman toaster oven. I was a hell of a cook with that shit.  I mean I was cooking big dinners with them.  The bathtub started leaking into the kitchen and the living and dinning room where cold, so we cooked in my bedroom.  The hot plates second as heaters.
My unemployment  ran out. The bills were accumulating, the house was crumbling down around us.  I took the money out of my 401k. I was young still plenty of good working years in me. 

I finally get a job in another home care agency, my position was Director of Human Resources, it's a private agency.  I get fucked around.  I had more experience then everyone there.  In my previous position I my title was Personnel Specialist, what I did was hire and supervise the home attendants, this was a city agency. In the private agency this position was coordinator.  I would assist the coordinators with their jobs. There was a VIP client and I helped the coordinator get an aide.  The coordinator was calling the aide and client family back and forth to discuss the responsibilities, the directions and whatever else.  I suggested that she set up a conference call and let them talk to each other.  When Christmas came she receive a bonus for her quick thinking in making the conference call, she looked at me when she accepted the certificate and cash award.  I didn't say anything, and I didn't feel guilty when I accepted a position with an agency downstairs.

While I was with this agency I was able to get a loan/mortgage to do repairs on the house. I got the electricity and plumbing updated and they tore down the walls on the first floor and the stairs going to the second floor.  The bathroom and kitchen were redone.  I had a new house.

The other job I took was with another private home care agency where I was a coordinator until they opened a branch in Brooklyn, where I would be promoted the office manger. The salary was good and I shined in that position, I created a lot of revenue for the company.  After a year I was promoted to Assistant Administrator, I was in charge of the three NYC branches.  I was a fair boss yet I was firm and took no shit.

Mr. 23 years went to rehab and things were okay.  He got money from the suit when he got hit when were trying to get guardianship of the young girl.  He was also in a relationship with several women.  It didn't bother me because at this time I was too tired to have sex.  I only had interest when I was high off cocaine.  I started using the coke to help me with energy.  I was always tired.  I wasn't having any affairs, just working and hanging with C, we would just hang at her house or over one of her friends houses.

Mr. 23s' friend moved in, I was renting rooms. which is a joke cause they didn't pay any rent after the first month.  Mr. 23 and I would talk about putting everyone out but never did.  My step son was there, his friends were coming in and out.  My daughter had a friend and I'm calling out his name, Sunday.  Sunday was homeless at like 14, his mother didn't want him. Just like my stepson, so my stepson took him under his wing. Mr. 23 and his brother, really his friend but he was like our brother.  He was close to us both.  Back when I was studying the 5 percent lessons hard we use to build with each other.  We both kept studying and were into the esoteric studies.  So anyway everyone was looking out for Sunday.  He use to do these robberies and get locked up and the next thing you know he was back on the street. 

My stepson had a warrant for his arrest because of a drug sale. He and I talked and he assured me he wasn't doing any business in the house.  There were telephone trucks across from the house and the street lights use to go off. We were being watched.

One night this guy, an older guy comes to the house looking for my stepson.  Sunday had introduced him to my stepson.  A few days later I came home, C was with me.  the door was open and the police were all over the place. I ask the police whats going on and he asks who I am and I tell them I'm the owner.  I go in the house and everyone is handcuffed and on the floor. They handcuff me and we all 9 of us spent the night in jail.  I was arrested when I was 19, for buying alcohol for a minor.  I was just given a given a date to go to court.  This time I was finger printed, photographed and locked down over night.  I held my pee for most of the night, unheard of for me.  My youngest daughter was in the cell across from us because she was a minor. They gave us sandwiches stale bread, baloney or cheese.  I didn't eat or drink. I had no idea what time it was.  I took my boots off and slept on them. My step son girlfriend and I stayed close. They let us all go except my stepson, his girlfriend and my tenant that was in the attic.  My tenant had guns in the attic, he had permits for them but they expired.  He had a pearl handle .22 that didn't get on the rooster. We were held for 24 hours later.  I went got cash and we all went home.

My oldest daughter came home from work that morning, two of my stepsons' friends stayed in the house all night because the door was broken from when the police busted in. When we got there the house was in shambles, they tore everything up. They found some cocaine residue and some heroin, Mr. 23 took the rape for it, the coke was mine of course.

We found out that Sunday made a deal with the police and he set my stepson up.  some of my stepsons' friends were going to murder Sunday I was able to talking them out of it. but I couldn't stop them from kicking his ass.  I was mom and they respected me, they came to me with questions and talked freely with me.  If anyone said anything wrong to me or disrespected me, I called them my boys they took care of them. I took care of them too. 

There's more to follow another day.

Wednesday, December 8, 2010

Me Verse Lupus: Doctor Sensitivity Course

Me Verse Lupus: Doctor Sensitivity Course: "I came to your office to find answers for the ills that ail me. First of all I’m not a statistic, I’m a live specimen. I am scared, a..."

Tuesday, December 7, 2010

Doctor Sensitivity Course

I came to your office to find answers for the ills that ail me.  First of all I’m not a statistic, I’m a live specimen. I am scared, anxious and don’t know all the technical terms, not even sure how to pronounce most of them anyway. I don’t know the names of all the tests I’ve taken, you see it was another doctor who ordered them and they spoke doctor language too. Remember I didn’t go to medical school; in fact I wasn’t even that good in biology or chemistry. So speak to me in the language I speak.  I am not an imbecile; I’m trying to understand my illness. 
I have questions, to you they may be stupid or insignificant, but to me they are very important.  So please don’t talk down to me or display loathing, I have feelings you know.
And another thing this appointment was made several weeks ago. You could have been prepared to meet me.  Was it too hard to review my records from our last visit the afternoon before my appointment or this morning before your patients began to arrive?  I mean this way you would be familiar with my case. My time is important, just like yours, you know.
Before you diagnosis or undiagnosed a patient, get your facts in order. Do you know how stressful is to wait for a call or worst for the next visit that may be weeks away? First the anxiety comes, that leads to depression and then I’m sick with worry.  I want to know what is wrong. I want to know if it isn’t what I was originally diagnosed with, then why am I feeling the way I am. What is that I have, why am I taking all these drugs to treat something I don’t have? Worst you speculate, order test and now I have to wait to know what is wrong and to be treatment. Until you know for sure what is wrong with me, keep your mouth shut.
Do not pretend to care after you displayed your bitch personality.  I know a phony.  There is a whole network of doctors out there.  I can drop you and find another in a minute, I can write the American Medical Association about you. I can rate you on  or .
I want to trust you and feel comfortable enough to ask you anything about my health, progress and treatment.  Keep this in mind as you practice medicine; treat your patients with respect, kindness and most of all compassion. Hear what I have to say, don’t get disgusted if I get the terminology wrong, or phrase the question incorrectly. I am not a doctor I am a sick person looking to you for answers for this frightening phase in my life.
I don’t think this is too much to ask.  Does anyone else have any subjects that need to be added?

Monday, December 6, 2010

Me Verse Lupus: New Rhuemy is a QUACK!!

Me Verse Lupus: New Rhuemy is a QUACK!!: "I woke up this morning feeling good. Well actually I went to bed feeling good. I took the hair off my face. I used this Mary Kay facial stu..."

New Rhuemy is a QUACK!!

I woke up this morning feeling good. Well actually I went to bed feeling good.  I took the hair off my face. I used this Mary Kay facial stuff, I curled my hair and wrapped it.  I got my clothes together for today and went to bed. Despite that my son got himself kicked out of rehab, and got drunk and went to his sisters house and she was angry with me.  My grandson went to the ER and was diagnosed with bronchitis, that's where the subject of my other blog came from. I heard that she got into a physical fight with her on again off again boyfriend. But despite this drama I still felt okay.

On Saturday I accompanied my mates niece to an audition for the All City Choir, they were having a rehearsal, she auditioned during a 10 minute break and got in.  I really enjoyed watching them rehearse.

Today I went to see the Rhuematologist.  There goes my good mood.  This is the second time I saw her.  First they couldn't find my chart, and when they did they only had one page of my medical history she took.  She askes a few questions and talks with my actual doctor.  She is doing a study of lupus.  Her concern is my weight, which is mine too.  She says I probaly have PH because of my weight. Now I read that weight has nothing to do with the PH. I said nothing.  She said she doesn't think I have Lupus. She wants to know what kind of markers I had.  I mentioned the hair loss, the false positive syhilis, allergy to sulfa drugs, photo sensitivity, the rashes.  She says those aren't symptoms.  My blood work is good right now.  I've been on steroids for two years and about four months now. I've been taking cellcept for almost two years and I've been on plaquline off and on for I guess two years.  Do you think maybe the drugs are doing what they are suppose to? She claims my weight is the but if my health problems. I was over weight before I was diagnosed with lupus. When I got sick I was losing weight anothe symptom. Oh got so pissed.

I've been home since 1:30pm at 2:30pm I pulled out all my blood work I had  since I was diagnoised, I went on WebMd and looked up the laboratory tests used to diagnoise lupus and evaluate sle. Guess what, there are 17 markers, this includes test for renal function.  I had 9 markers when I was first diagnoised.

I see the doctor I choose to be my Rhuematologist on the 20th.,  if he agrees with her. I will be looking for another Rhuematologist.  I can't believe this.  I'm so damn angry, if I don't have lupus why am I taking all this fucking medication. Why? That woman is a quack!!