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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 18, 2010

Me Verse Lupus: Lupus the gift that keeps giving

Me Verse Lupus: Lupus the gift that keeps giving: "I woke up this morning, all thanks to God. I slept well until about 4 am when I didn't have my feet covered and when I tried to get covers ..."

Lupus the gift that keeps giving

I woke up this morning, all thanks to God.  I slept well until about 4 am when I didn't have my feet covered and when I tried to get covers it was pulled back away from me, and she sucked her teeth.  Yea I know she was sleeping, but. So me being the passive that I am, I go and get the blanket I've been crocheting so not to disturb her. 

I went to sleep about 9 pm, slept good, got up when my mate came in about 10:30 pm. I went to the bathroom and ate the chicken wrap she brought in from Popeye's then went back to sleep. Didn't get up until about 2 am for a bathroom run, the next time I woke up was when I was cold and had no covers on me. I did go back to sleep \and didn't get out the bed until 7 am.  No headache for a change.  Have one now though, I was redesigning this page.  How does it look? I didn't eat until like 10:30am.  Not a good thing, my body starts shaking and my stomach twists and turns. But done is done, I ate some Kashi Go Lean with Almond Breeze milk.

Lupus is the gift that keeps giving.  For the past few days I've been getting this numbe feeling that shoots up the left side of my body.  It starts with my leg then goes up my arm.  It doesn't hurt and it's only for a second so I'll just ignore it for now.  Yesterday I got woke up with a bad Charley horse in my right leg. usually I can stop them before they get bad, and if I don't I can relax them enough to ease the pain.  But yesterday I couldn't do anything but sit up and rock until the pain left.

There's a chill in the air and I love it.  I may go and lay back down and watch a good movie, if I can find one. Fall is my season.  I love the wind blowing the trees.  The darkness in the morning and evening.  The crisp freshness in the air.  Not being too hot or too cold and if is too cold I can put on a sweater. The changing colors of the foliage.  What's not to love, and as a bonus winter follows right behind with chills, barren trees, folks squeezing themselves from the cold in their winter gear, and snow on the ground, ice.  Hot drinks, cream a wheat, beef stew and cornbread.  No more 90 degrees, and I don't miss summer or spring at all and don't wish for it.  Fall and winter are the only seasons I need.

I know there are days that I have written and filled the pages with self pity and sadness.  It always passes.  A good cry, a good book, movie or pray helps.  My life is like a rainstorm, before the storm it gets dark, the wind blows, sometimes the dirt and leaves fly from off the ground.  The rage builds as thunder booms, a drop or two of rain  falls. Flashes of lighting sizzle through the sky and the clouds open and the pain  Pounds the earth with heavens tears.  When it's finished and the pain doesn't hurt as much.  The sun shines and the earth glistens with the memory of the pain as the storm passes.

Today is a sun shinny day for me.  I'm basking in tranquility, at peace with myself and the world.  Today is today and tomorrow is tomorrow and I will live both as they come.

Friday, September 17, 2010

Me Verse Lupus: Three physical fights three ass whoppings

Me Verse Lupus: 3 fights 3 ass whoppings: "I slept for 5 hours straight. I went to sleep after midnight and didn't get up to go to the bathroom until after 5am. We had a terrible st..."

Three physical fights three ass whoppings

I slept for 5 hours straight.  I went to sleep after midnight and didn't get up to go to the bathroom until after 5am.  We had a terrible storm last night.  They say it was a tornado, it didn't affect my area, just thunder and heavy rain.  I love that kind of weather, with all the turmoil around me it soothes me inside.  Some think I'm crazy.  I had/have even though I haven't spoken to her in months, a friend who would hide in a closet when it stormed. My mate was in Manhattan for rehearsal in a new choir.  She finished at 9:30pm and didn't get home until almost 12:30 pm.  I was up waiting. I was on FB multi-tasking, chatting with 3 people and sending messages back and forth with another and reading the wall and playing free cell all at the same time.  No brain fog last night! It made me happy that someone took the time for me. 

I have no one to talk to, or who talks to me.  My mate, she's always telling me to be quiet and telling me I don't know what I'm talking about.  She keeps me on a short lease.  I am sitting in a chair with a pillow that is so uncomfortable. If I move it she tells me to put it back. She says the chair smells like ass.  I give my opinion about something on the news, I don't know what I'm talking about. It sucks. I'm not a fighter so I just let it go it's not important. Just like I told her about the weather, she dismissed me, until she was riding around last night and couldn't get home.  I try to eat right and she tempts me with big breakfasts, and then lunch like 2 hours later and dinner.  If I'm not hungry she calls me to eat. Like eating is a major issue.  If I try to cut out meat, she says,  "you can eat meat." I try to make changes to my diet that I've heard, read or was told. But if she  hears it form someone like Dr. Oz, her mother or someone besides me say it, it's worth listening to.  She doesn't know how that makes me feel, and she doesn't care.  I mean all she has to do is listen and not dismiss me, like a someone of no value.

She has her own issues.  The second youngest of 7 children, what they say about the runt?  They grow up to be the fighters and she is.  She is a bully and I tell her that all the time.  She can be nice, sweet but it's her house, her world and I can visit in but not be apart of, my opinions are irrelevant if they don't coincide with what she thinks.  It's do as I say and there is no room for negotiations. So I have no one in my life. I am alone.  Why do you think I'm writing all my intimate thoughts and feelings.  Because I need to talk to someone that will listen and let me talk.  I'm not worried about being judge, let he without fault shoot the first bullet. Or go on Jerry Springer.  I don't think my life is that sick.  I was just stupid, misguided and with out any goals except to be a published writer.  Well this is my public writing.  I'm just not getting paid for it.

I've been saying I'm alone for years, and it's true.  I've always been the sounding board for everyone to tell their problems too, share their joys with.  But no one hears me.  I want to be heard, I want to know someone cares for real.  Telling me you love doesn't mean shit if you do things that say different.

 I'm not a fighter, I had three fights in my life and all three times I got my ass kicked.  The first fight was with this girl I grew up with.  It was over my sister. 

The next was when I went to a slumber party and the next morning I went to the store with my friend.  The guy who worked behind the counter was fine, he had a body that was cut all over.  This girl came in the store and bumped into me and told me to say excuse me, and I told her she bumped into me.  Sarcastically she said , 'oh excuse me'.  No problem so I thought, when we left the store, my ice cream sandwich broke off and fell to the ground and my friend yelled one of those, Ha-ha laughs real loud. This bitch came running back up the street lick a 18 wheeler with the two women chasing after her.  She snatched me and held me in a choke hold and kept punching me in the head. I had a knot on my head for days.  What happen was the guy in the store was her man and she wanted everyone to be aware of that.  It took three women to pull her off of me. My boyfriend, (the same one that gave me the trey bag of refeer,) I'm going to call him P, told me later that he had a fight with her and she almost kicked his ass. I've seen her as an adult and she doesn't know who I am. She married that man and they had children.

The next fight I had was in high school.  That girl I hung out with had this boyfriend, he had a brother.  So when we were over her boyfriends house, I fucked the brother.  He had a woman and they had a son.  What the hell did I care, it was sex, nothing more. My friend told everyone I was her man's brothers' new woman. The next day she came up to my school.  I had on my rabbit coat, didn't take it off either.  This bitch dug her fingers in my face and left scars, the only thing I did was bite her finger.  However, she had to get a tetanus shot and stitches.  But my face had scars. My friend, the same one and I dropped some acid later, when  I left her I went to Ps' house. I didn't want to go home cause I was tripping. He had just robbed someone and didn't want to go outside but he said I needed something to come down with. So he told me to wait in his room until he returned.  He had all these velvet poster that glowed in black light. The ones that looked like you were in a maze. I was bugging, I couldn't stay in there so I left.

The reason I mention P is because he was cute, yellow boy with light brown eyes. That boy was something.  He had all these girlfriends. Thinking about him today he wasn't all that. Well this group of girls used him as an excuse to jump me. I was with him in the park with my brother and his wife, my nephew and my brothers' friend. These girls came up and threatened me.  My brother and sister-in-law protected me.  They argued with the girls and my brother was about to kick some ass when one of them said something about my mother.  Nothing happen but I saw my brother in a different light.  I always knew my sister-in-law was a hell raiser even though she was quiet around the family.

Later I saw the girl who was suppose to be messing with P in the movie theater. She told me those girls wanting to jump me had nothing to do with her.  They wanted to jump me because I was a pretty and light skin and the fine guys wanted me.  I didn't know any of them. 
I started believing my looks were a curse and wanted to be ugly. I washed my ass, combed my hair but didn't care how I looked.   I was exotic people use to say.  Bed room eyes, what they called good hair. Vanilla wafer complexion that was clear, free of any acne.  Thin nose, perfect lips, high cheek bones.    I was called stuck up, conceited.  When I was befriend I was usually used or set up.  So I ended up with very few friends.  My sister-in-laws' sister didn't like me until one day we went to Rockaway Play land and went off to smoke a joint together.  We left my sister-in-law with her son, little sister, little brother, her niece and my sister.  We didn't think we were gone that long,  when we came back we were fucked up, three of us on one joint, some guy gave me. Sister-In-Law was piss with us because we left her with the kids.  But now I had a friend that I could really talk to.   I had my friend from church but she lived further away.  I had my school friends but I couldn't hang out with them, they didn't live on my block. Remember I couldn't go anywhere, probably why I played hooky from school. With my sister-in-law sister I could leave the block and hang out with her. I love her so much. We talked about everything and did everything together.  When I had my son I lived with her and her man. We sat up drank beer and smoked refeer.  That's where I meet my daughters' father. One night she wanted to test her man and me and sent him to get in bed with me. It was crazy we do anything.  She didn't want to be my friend, after a few months, I went to her house and extended the olive branch and we kinda made up but it was never the same.  Her little sister was always trying to throw daggers.  Once when a friend from elementary school came up to visit me we were talking.  We were like 19 and I read and article about working, it said that what ever field you start working in that's the field you would always working in.  I had mention to my school friend that my in-law would probably always work in a factory, she had already worked there for about 2 years.  Her sister misinterpreted and my in-law questioned me like I was her enemy. 

Once she baby sat my son and when I came home from work one day, he was drunk. She was drinking beer and didn't pay any attention to him when he was following behind her drinking the beer she put down. We remained friends but I was caution about what I said around her.

I gave birth, my sister-in-law had a baby a month before and her sister had a baby a month after. We all had girls, my sister-in-laws baby died.  I told her her sister I wouldn't take the babies clothes if she offered. I was 19 I didn't know anything about losing a child, I didn't know anything about some one close dying.  The little sister of course  misinterpreted  and told my sister-in-law who understood what I was saying.

One night we were at my apartment and my friend suggested we put on bath robes and go in the living room and take them off in front of our men and we did. And we had a foursome.  Later her man couldn't handle it and beat her, she ran to my house half naked.  He followed her the next day and came to the house and broke the glass.  I called the police and my man told him, so he left. She went home behind him.  Our relationship was strain since then.  Years later she married him. I talk to her now and then but we are from two different worlds like I am with everyone in my life.  From that incident I learned that women who are beaten by their men will stay in the relationship no matter what you say or do.  I've been around many men that beat their women.

Mr. 23 use to beat women.  He told me some horror stories of how he use to be before me.  His family told me I calmed him down.  His friends all hated me because he change. He didn't want to hit me but he did.  He throw a dictionary at me once, hit me in the head with it.  When he was smoking that PCP soaked in cigarettes he came home had me strip naked and beat my ass with a paddle, I couldn't sit comfortable and my ass was black and blue for days.  He left and went to the gorrillas' house, who is now his wife. He said he didn't trust himself around me.  I was hurt and after a night or two I called that womens' house to see if he was okay. (Oh she use to call my house and I had caller ID). When I met the women I'm with he was so pissed that he hit me in the eye and gave me the first black eye I ever had, (oh and last.)  Those were the only physical abuse I had.  He use to wrestle me and force me to have sex, but causing physical harm what I mention was all. I was verbally abused like I am now. I guess I'm so sensitive and emotional all you go to say is boo to make me cry.

Thursday, September 16, 2010

Me Verse Lupus: Back in the day when drugs were fun

Me Verse Lupus: Back in the day when drugs were fun: "I woke up about 4 am so did my mate. I was cold but wasn't sure if it was cold. I don't trust my body. It must have been cold cause my mate..."

Back in the day when drugs were fun

I woke up about 4 am so did my mate. I was cold but wasn't sure if it was cold.  I don't trust my body. It must have been cold cause my mate got a blanket, I went back to sleep and didn't wake until after 5 am and did my mind thinking thing, got up at 6:30am and I felt good! The headache was dull almost non existing.  I took the Claritin last night and Nasonex. So maybe I can still read my body some.

Good news yesterday, I made an appointment with a new pulmonary doctor on 10/4, a new Rheumy doc on 10/14 and medical doctor who is a cardiologist on 10/13.  I'm optimistic that they are going to find the miracle combination to make me feel well.  All I really want is to lose some of this horrible blubber, yes blubber I'm the size of a baby whale, I could feed the Eskimos’ in Alaska for a month, I was going to say a year but that would be stretching it and exaggerated.  Also to get rid of this pain in my left lung and to be able to move around without it hurting. I can deal with everything else the anxiety kinda feels like when you had some real good cocaine and we all know how much I love cocaine.  (No well that's the main thing I miss, not cigarettes and not liquor.  I still would love to have a hit or two of coke.)  I would like to know what is causing me to be dizzy and this numbing that I get in my mouth. But even that I can handle, the swelling and pain I can tolarate. However I would take some good pain meds, unfortunately they don't get me high like the rest of the world they just numb my pain like they're suppose to.

I've always had a high tolerance for drugs.  I stole my first bit of refeer from my brother and his wife.  (Sorry to inform your kids about your past, if any of them are still reading. But it's my confessions and this is a part of it, and you didn't miss it anyway, you had about an ounce.) Anyway I went over to the candy store where my boyfriend worked.  A policeman was the owner, Ha-ha!  I ordered some bambu and my boyfriend smiled cause he wanted me to try the cheba for a long time. He gave me a trey bag.

Thinking about it now I don't know why I decided to try refeer.  I did a report in school about drugs; I was suppose to interview family members and get their opinions.  I don't remember what anyone told me except my oldest brother.  He lived in the basement and the smell of refeer always filled the kitchen, all the way up to the last days of his life.  He told me all the other drugs were bad, but there was nothing wrong with a little maryjane every now and then. It was natural and grew off a bush dried and ready to smoke.  That may be what peeked my intrested.  My brother was cool, the nuns hell they were married to God what did they know? Marijuana a gateway drug, leads to other drugs.  Na!

After got my papers from the store my friend who I met in church and (we are still friend to this day, the one who worked in the World Trade Center.) We went to her house, which we usually did on Sundays, she live in a co-op housing complex.  We went to the park, the wind was blowing, I didn't know what I was doing but I managed to roll a joint of my brothers' stuff it tasted funny, it was green.  So tried the one my boyfriend gave me, it was brown and had a different taste.  It was good.  We didn't feel anything but when we went to the handball court, I couldn't stop laughing.  I was now a pot head. Back in the 70s' is was easy to get. Everyone was smoking if you sat next to someone smoking they would offer you their joint.  It was rude not to accept you know. When you went to the park and if you didn't have any money you could always find a nice size roach.  A nickel bag of refeer usually had enough to make like 15 fat joints.  Refeer didn't have names like they have now, back then they were named after the territory it came from, Acapulco Gold, Panama Red, Tai Stick and the best shit of all was that Jamaican herb, ‘gunja.’ Them boys always had the best shit and plenty of it. Oh yeah that black shit it was embalming fluid, You know the stuff they use to preserve dead people. That was good shit too.

Once I got in high school I met this girl who was wild and I followed her.  I don't know why, but after the restrictions of Catholic school I loved the freedom of HS.  I played hooky every day.  I tried coke, didn't care for it back then. Had angel dust, (refeer soaked in PCP), pills and tabs of acid.  I liked acid too, but I was scared of it.  I did take it now and then.  (In fact the guy who is a billionaire my mother let me ride with him to Atlantic city on NJ Transit, we stopped on 42nd street and brought  a loose joint, tobacco rolled up and a tab of acid, a piece of loose leaf paper with an oil mark on it. The guy told us to drink some coffee to make it work. We slept all the way to AC. Needless to say we got beat.) But I tried anything except heroin, saw too many junkies.  They were always nodding, dirty, couldn't talk. Not cool, not me.  Thank God, I probably would of killed myself if I got into dope.  I surely would have gotten aids with my sex addition.

My life of sex and drugs can go on forever. My constitution was strong and I was always the one whose' head was straight.  I could drink you under the table and over.  I could smoke so much refeer all I had to do was take a puff in the morning and be just as high as I was the night before.  Cocaine I sniffed until I couldn't talk and my mouth was numb and my twat itched for some freaky sex. I smoked crack and crawled on the floor looking from that piece of rock that fell earlier when I had plenty.  But the difference was that I saw what it did to my friends.  It called me just like it did everyone else, but I didn't listen.  It was bad enough that my kids had a sex addict who liked to get high as a mother and a father/stepfather smoking crack and doing dope.  They didn't need me to be a crack head too. My constitution kept me from being an addict to anything but sex and cigarettes.  I always tried to ensure that my kids had a roof over their head and food in their bellies, even though there were times they went to bed hungry and cold.

Funny how my mother put my father out because she didn't want us around a drug addict.  My son's father spent his life in jail.  My oldest daughter is just like her father. So is my youngest daughter. Goes to show you genetics run deeper then what you look like and what illness you'll inherited.

Wednesday, September 15, 2010

Me Verse Lupus: Another lupus day-tears and turning belly

Me Verse Lupus: Another lupus day-tears and turning belly: "It's 7:21 am. I didn't go to bed last night, er this morning until almost 1 am. I am tired, but insomnia is lurking around. I don't have B..."

Another lupus day-tears and turning belly

It's 7:21 am.  I didn't go to bed last night, er this morning until almost 1 am.  I am tired, but insomnia is lurking around. I don't have Benadryl, I purposely didn't get any because I know it effects the brain. I don't need anything else fucking with my memory. I woke up and felt like I had to vomit, I sat on the tub and stuck my head in the bowl.  I guess you would call it dry heaving, because I have nothing to bring up.  I even put my fingers down my throat but nothing. I'm sitting here and I feel my stomach turning.  Looking at my Cellcept but afraid to take them, but I got to, I can't eat for two hours before or after and the longer I wait to take them the later it will be before I eat. Also the headache subsides after I take them. I have a lot of phlegm in my throat and lungs too.  I'm still not going to the emergency room.  I don't want to sit in there all day, I don't think it's anything serious. It's probably  my sinus or allergies.  I'll take some Claritian tonight. Two weeks and I'll be seeing new doctors I can hold out.

I realize I'm writing this blog so I can talk to someone.  Well no one is answering me, but I need to let shit go.

There are still things I haven't revealed, things that I'm ashamed of one is I had this dog.  My youngest daughter use to bring home every stray.  Well this particular dog was a female, she got pregnant.  I left her in the back yard, in the hot sun for days and didn't have the energy to feed her or give her water.  I let this dog starve to death, her and her babies.  This was some 20 years ago but it still haunts me. I can't believe I let something like that happen. My daughter also had a hamster that she stopped taking care of.  I don't like them and won't touch them.  But it had a water tube that I could pull out the tank, so I would give it water and I would throw the food in the tank until I made her give it away.  So maybe I wasn't that heartless.  But I know the dog will cost me when God judges me.  I don't even remember the dogs' name.

She brought another puppy, he was full of mange.  I treated the mange with over the counter meds from the pet store.  My step son and his friends use to kick him around and treat him like shit.  But I took good care of him.  His name was Shaquan.  He grew to be a beautiful dog, he was big.  I kept him in the basement away from everyone who treated him bad.  Only me and my daughters fed him and showed him love.  He was one of the best dogs I had.  He wouldn't let anyone near me or my daughters, that included my man and step son. If they moved too fast he'd growl at them and snap.  He was an excellent guard dog.  I came home one day and he was gone.  Someone gave him away.

I was living in the projects when my mother died.  I had just got my bills caught up, I didn't owe rent.  On April 29th it was Mr. 23 years birthday.  I had a car my brother gave me that didn't go any faster then 35mph.  I had got into a habit of talking to my mother every night. Finally getting close after 33 years.  We talked about what we were having for dinner, what I did at work and what she did that day.  On the 29th she said she was having pains in her chest, but said the doctor told her she had gallstones that morning and that's what it was.  I vowed I would go stop by on the way to work. But I was running late so I went straight to work.  Before I sat at my desk I got a call, the receptionist told me it was my mothers' neighbor. That was odd. I rushed to my mothers' as fast as I could.  Why didn't I get someone to take me?  Why didn't I just go to work late?

When I got here the paramedics were working on her and wouldn't let me go upstairs. When they came down I told them that last night she was having chest pains and assumed it was her gallstone. Why didn't I go to her house that night. Damn!! She died, they said it was a heart attack.

My aunt called and asked me if I was going to move in the house.  I told her I would. I didn't think about it.  My grandmother was living in the house.  She had osteoporosis and need someone to be with her. I never wanted a house, I knew how much work it was.  I knew I couldn't afford a house. I moved in that old house that was falling apart. I tried to take care of Gran, but it wasn't easy.  Mr. 23 years started getting high again, so it was a struggle keeping food on the table.  I did the best I could but I believe I could have taken better care of my grandmother.  One morning I went to the bathroom after her, she soiled the toilet.  When I came out the bathroom she was laying on the side of the bed, I called her and she didn't answer. I called 911 and they told us to put her on the floor and do CPR, Mr. 23 years did this.  She was alive when they carried her out.  I followed the ambulance to the hospital, by the time I got there and found parking she died. If you think the dog that died in the backyard haunts me. 

I'm a terrible person.  I guess that's why I get no respect, one reason I miss work.  I was respected there and I made decisions that were valued.  Today my mate treats me like I'm stupid.  I can tell her something and she will disagree with me until someone else tells her the same thing.  I brought a cork board. She originally wanted to put it on the wall by the steps.  Good place in my opinion, you can see it as you walk upstairs and the notes we would put on it.  Great reminder. But now she wants to put it on the closet door, where the calender is.  I won't use it, the calender is usually 2 months behind because neither of us looks at it.  When she wanted to get a cork board I was great, it'll help me with memory.  Now it will be in a place I would have to remember to look.  My opinion ain't shit, and I'm not one to argue.  So I do what I always do in my relationships.  I back down and keep my opinions to myself.  Well now I express it on this blog. She won't read anyway.  If it's not important to her it's irrelevant..

Tuesday, September 14, 2010

Me Verse Lupus: Religion and me.

Me Verse Lupus: Religion and me.: "It's a new day. I feel a bit tired as usual, head ache is gone, got out the bed at 7am. My mate was on the computer so I had a late start...."

Religion and me.

It's a new day.  I feel a bit tired as usual, head ache is gone, got out the bed at 7am.  My mate was on the computer so I had a late start. While she checked her emails, I juiced some honeydew melon, it's in the freezer waiting for 9 am for me to drink.  I'll take my meds with it and be full for about an hour and half almost 2 hours.  That's what's good about juicing, low calories and getting full.  It's just a lot of work. cutting and cleaning the veggies and after the juicer.  If I had the energy and the money to juice all day I would.  I love the way veggies taste juiced with apples.  I use to juice about 20 years ago, I lost a lot of weight and I lost fast.  I also felt good. My head was clear, more energy.  In fact I was pretty health conscious 30 years ago, I use to stop eating meat. My kids hated it.  After awhile I craved my meat and had to have some beef.  I guess I could have handled it if I ate chicken and turkey, you See when I gave up meat I was what they call a vegan today. No milk, eggs or cheese. I even drank wheat grass, it taste good to me a little like liquorice. I wanted to get an extractor and buy the wheat grass, but expensive.

Yesterday I started making 6 greeting cards.  I designed them and worded them.  I put glitter and stickers on two and have 4 more to go. I have a nephew, a cousin and his wife, a nephews wife a step nephew and my brother birthdays all from the 17 to the 20th. I'm going to try and do cards on Monday and Tuesday to sell. Another one of my projects that's not taking off.  I need help in setting up a website and getting the information for receiving money through my pay pal account.  Then of course, I think they look nice and I get compliments for them, but there's that nagging bitch in my head that says, anyone can make cards, they aren't going to pay me $5 to do what they can do for themselves.

Damn that lupus, I just had an anxiety attack and right after my stomach got nausea and I throw up nothing but phlem. I still have a half hour before I can drink my juice.

Well my laying in bed thought this morning was religion.  I believe in God and the higher power, is his name Allah, Jah, Jehovah, Elohim, or I Am, I don't know.  But I do believe there is one God, but I don't believe in  religion.  I had a problem with religion from when I was a little girl. I went to catholic school and church.  In fact I was baptised on 2/4/1960 the day after I was born.  I had jaundice and they didn't expect me to live, I had a blood transfusion and was in the hospital for a month or so after I was born.  I started out sickly, it's only fitting I end my days sick.

Back on track, I had my holy communion, conformation and went to confession, I think this is why I'm revealing all this, it's my confession.  Yea to an open forum because I don't believe in religion but still haunted by the practices of the religion I grew up on. 

I became disenchanted with the Catholic religion when I realized the nuns and priest were teaching us not to lie and they were liars.  They taught God was love, and not to fear God, but would tell us God sees all and will punish us if we were bad, but if we were bad and we confess our sins, we would be forgiven.  If we were bad in school then we were threaten with the spanking machine. Which later I learned was the mimmograph machine making noise behind a closed door.  So I was searching and growing up hearing King and Malcom on TV, speaking abput racism, even though I didn't experience, black white racism.  I did however feel racism from dark skin black.  Another story.

There's a group called the 5 percenters. Elijah Muhammad recieved his teachings, from Wallace D. Muhammad, Elijah taught the black folk a religion from the East with lessons relevant for the decendants of slaves.  It gave us pride and told us we were the orginal people of this earth and called the white man the devil.  The teaching had, lost for a better word, haters, and one who disagreed with Elijah. He taught a group called the 5 percenters, he was the father, Clarence X.  He added an alphapbet to the teachings and he recruited and taught the young.  We were like soldiers, faithful to the words and cause, but still able to drink, smoke and drug.  The women wore long dresses and covered their heads.  The women were earths' and the men gods.  I was introduced when I was 14.  I met me 23 years and he was in the nation and taught me the lessons.  It was a language that we spoke to each other and we were teaching the children.  I was submissive and true to the teachings.  I could quote the lessons with out a second thought. But for me 23 years, drugs became his god and I drifted.  I wanted to celebrate Christmas, I wanted  to wear tight jeans and fix my hair.  So I stopped studing.

I was with the first homecare agency when  the women I worked with, wanted to save me, they would take me to their churches. We use to gather in the nurses office and say morning prays.  I believed in God that never ever changed but I had a problem with religion.  The 5 percent wasn't a religion it's a way of life and the lessons are good if you are dicipline.  Mr. 23 years wasn't, oh he could quote the lessons at a drop of a dime but he didn't live the life, when he was out there stealing, lying and drugging.

I always read books, I read books about history, memory I can't think of anyone except  J. A. Rogers. I enjoyed reading about Egypt and the pharohs.  I enjoy the old testment, the Koran is difficult but I've read it. I 've read the haddith, the Torah.  I found Quballa and loved the mystsicms to it. I believe I am spiritual and I know God but I follow no mans' religion.  God speaks in my heart and he knows what's in my heart.  I am thankful for the life he has given me, for the things he has shown me and I believe I have a purpose and reason for this exsistance in this world.

I believe I'm a good person, I try to help people when I can.  I try ont to speak negative to, or about any one.  I don't use the Lords' name in vain and cringe any time someone says G** damn. I try to see the good in people instead of the bad. But as I've said I am human and we are flawed and I make mistakes and pray for forgiveness.

Monday, September 13, 2010

Me Verse Lupus: I need...I can't remember..tear

Me Verse Lupus: I need...I can't remember..tear: "Went to bed last night at 7:20 pm right after a nice shower. I put on a movie, it was corny, I put my c-pap machine on and before I know it..."

I need...I can't remember..tear

Went to bed last night at 7:20 pm right after a nice shower.  I put on a movie, it was corny, I put my c-pap machine on and before I know it I was sleep.  Must of been about 8:30 pm I didn't get up until about 1:45am for my first bathroom run. As usual I woke up at 4:45am however I stayed in bed until 6:30 am. WoooHooo!  I'm still tired aint that a bitch? I went to my online support group, I checked the lupus page and I will use the topic I was reading my subject to voice today.

But first I just want to release the tears I felt when I went to the Pulmonary Hypertension page, it is there that I long support.  I am waiting for official diagnoses and want, need answers and support. Well I guess since I'm not officially diagnosed I'm not worth the members time.  I've asked questions and no response, a man who joined the site after me got responses. What the hell is a support group? You only support those who are sick not waiting to find out.  The wait is scary and it's during this wait when support is really needed.  My doctors considered PH last year but since I don't have insurance they couldn't preform the heart cauterization, but the stress test and echo shows activity on the right side of my heart. The doctor that suggested that I have the heart cauterization says I need to be treated right away. Fuck it...I need to stop crying about people who won't support me, I don't know them and they probably don't know shit anyway. I'll have insurance next month and get the help from real people, not from vitrual snobs.

On the lupus page someone questioned the brain fog. Reading the comments on that page was enlightening.  Funny choice of word, huh? I felt this brain fog when I was still working at the PO.  I thought I was just tired.  So I would try to get more sleep.  I wasn't drinking as much but I was doing my cocaine because that woke me up for short periods. I use to be so on point, smart and I had an extensive vocabulary.  I figured all the years of smoking, drinking and drugging had caught up with me.

 I use to take care of this lady who was 92 with dementia when I was unemployed from the home care agency.  I worked for her when ever I was unemployed.  It was something like 2 years off and on.  When I first started we use to have great conversations about her life, her trips to different places around the world. As time went on her memory became progressively worst.  She couldn't remember my name, she couldn't remember if she ate, she couldn't remember what we did that day or even what day it was no matter how many times I told her. She was also blind, she became blind in her 80s'.  I felt sorry for her and I prayed to God that I would never loss my memory, it was a major fear.  When I was a coordinator in home care I had plenty of clients with alzihmers, they were always the hardest cases to cover.

Losing brain function is scary especially when there's no concret answer.  I noticed that on some days I can stay focused, watch a movie, read a book, even play suduko.  On others I can't stay focused. Reading the comments in the support group this morning was soothing and reassuring.  It let me know that I'm not going through this alone.  Now I will make noise when I see doctors, there has to be some help out there and there has to be doctors who understand the impact lupus has on the brain. I'm sure if they are caring for lupus patients and many of us are saying we are having memory problems, I mean they can't ignore it.

Everyone around me gets annoyed with me when I don't remember things.  I literally feel like I was in a black out when they say, 'remember I told you.' No! I don't remember! But they insist, 'yes you do.'  I get so angry, not scared because I didn't believe it was me with the problem. They were just fucking with me.  Dispite my memory failing when I need a word to finish a sentence, when I can't remember the name of that good movie I saw.  When I make a list of things to do and I can't remember where the list is.  When I go to get something and I can't remember.  Even as I write this blog I can't remember my next thought I want to express.  Funny how I remeber my past, funnier still how certain events trigger memories and I say I'm going to share it in my blog only to forget when I go to write. I remember tastes, smells, looks from people.  I can even remember conversations of no importance.

Lupus is a horrible illness, there are so many aspects of it that when you think you got a handle on it, it smacks you in the face with some more bull shit. Sad that no one understands, sadder still no one really cares unless they are affected.  When you become sick friends no longer have time for you.  I really never had too many close friends, but the few I had don't hear me cause they only hear their own problems. I guess over the years I was always the rock, the one they could (? what's the word?) spill their anger, pains and fear to.  I was the one who had the voice of reason, who would listen.

Now where are the good listeners for me, who is there to comfort me.  I need.............

Sunday, September 12, 2010

I wasn't a mean person but I was that night.

4:45 am, I went to bed about 11:30 pm, I woke up to go to the bathroom for the first time at 1:45am then about every hour and a half.  At 4:45 am my mind started it's busy thoughts. I try to clear my head with the meditation technique of emptying your head of thoughts, trying to make my mind blank.  It's hard to do when you have on the c-pap machine, you know, inhaling through your nose and exhaling through your mouth.  I'm suppose to keep my mouth close. I got out the bed at 5:30am,  Another headache, my pressure is not too bad 142/77 temperature 96.8. I don't know the last time it was 98.6. I wonder if that's because my body is dying. your body is cold when you die.

I got the bill for the insurance yesterday, I sent the money order right back. I should have coverage by October 1st.  I hope I find good doctors, one who can treat my breathing issues.  I'm so anxious to find out about the Pulmonary Hypertension.  I don't know if it's in my head, but I think my breathing is getting worst.  I litterly feel myself struggling to catch my breath. I can't walk across the room without getting winded.  I keep sucking air in and pushing it out, like I can't get enough air in my lungs.  My back hurts where my left lung is, it's been hurting off and on since I broke my leg 1/09.  I fell down the steps and I hit my back which was bruised, I assumed that's what it was. Now it's always hurting, sometimes it's a sharp pain. My chest hurts also, feels tight but is lets up. It's not unbearable, it may just be heartburn.  I'm not going to the ER, they'll either find a reason to admit me or find nothing wrong.  So I'll wait and see if it passes.

I hope to find a Rheumatologist who will reduce my steroids and help me feel normal.  I don't know the person living in this body.  I am a foreigner to myself. My head is always foggy first of all and second it's hard to accept being chronically ill.  I'm always wishing I wasn't sick.  Wishing that instead of getting up in the morning because I can't sleep, instead I wish, I could sleep but have to get up and go to work. Right now I feel that my life has no meaning. That I'm existing not living.  I hope I find a doctor who can give me a life that's some kind of normal.

My oldest daughter called me twice yesterday. My phone hardly ever rings.  The week before last my son brought his stuff to my daughters for her to hold until he gets out of rehab.  His TV is bigger and clearer. Her TV has these lines on the top distorting the picture.  So I told my son to switch the TVs'. My daughter wasn't happy because she couldn't turn his TV down because there is no button.  You have to use a thin stick to push the button in the hole, too much trouble.  So this past week I had my son switch the TVs' back.  My daughter has an invitation for a city job interview, she says the letter was on the TV, and we lost it.  I feel so bad, I mean she should have put her papers away, especially since I told her I would get her brother to move the TVs' back. But I swear I didn't see her letter.  I'll leave her alone for a while, she's too busy for me anyway. I annoy her anyway.

I was thinking about when one of my girlfriends had her 15th birthday party.  I was 14, it wouldn't be a party without some liquor and reefer.  I brought three bottles of  'Wild Irish Rose', ninety-eight cents a bottle. I also brought a trey bag of reefer.  I drank one bottle by myself, one bottle I shared with a few people on the back steps in my girlfriends building.  The last bottle I poured in the punch.  I was fucked up!! I got sick and threw up in the bathroom.  The party took me out side to get some air. I don't remember much but after walking some I started getting it together.  This guy that worked in the grocery store, who liked me joined us as we were walking.  I remember him dressed in all white, he was very dark.  He had a walking stick with a ball on top.  It was the 70's, Superfly, the Mack, era, he was steppin', as we use to say.  He came over to me to help me and I started laughing and said, "aw, look at wart." He had bad acne, I was the only person that didn't call him that.  he backed away from me and I never saw him after that.  I was never a cruel person, well not to people I knew personnaly.  To this day I still feel bad and wish I had a chance to tell him how sorry I was.  It was the liquor talking.  But trust me I was able to hold my liquor from that day on.

Except in the year I was getting sick.  That year I got sick I was drinking like I had a unsatisfied thirst, I found this guy who sold some good cocaine, weight was good and the quality was superb, I could add more cut to it. I was making good money so I could afford the rich man drugs, I wasn't smoking crack.

I'm shaking my head cause I hurt myself.  I deserve what life had given me.