Total Pageviews

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 25, 2010

Me Verse Lupus: I Hate My life

Me Verse Lupus: I Hate My life: "Yesterday wasn't a bad day. I finished my hospital blanket last night. My mate spent the day with me watching movies. We had pizza for din..."

I Hate My life

Yesterday wasn't a bad day. I finished my hospital blanket last night.  My mate spent the day with me watching movies.  We had pizza for dinner one slice, I can eat 2 but there were 6 of us.  I ate a piece of cake and went to bed about 8:30pm I couldn't watch TV, my mate wanted peace and quiet. So I read my Nook until I could close my eyes, but as usual I turn of the nook and I'm fully away again.  I didn't look at the clock because I didn't want to know what time it was.  I tossed and turned.  I woke up all night but didn't have to get up to go to the bathroom until something to 4am, at 5am my mate woke up turned the light on and that was that for sleeping. She got out the bed at 8am and fluffed her pillows.  She's so heavy handed that when she puts them back on the bed, by my head, she slams them.  When she gets on the bed she plops down hard.  We sleep on a Temper Pedic, we're not suppose to feel when each other moves. But I'm the selfish one who needs the TV on to go to sleep. I wasn't sleeping but I had my eyes close, my body was sleeping. It was 8 am I could of stayed in the bed, my body wanted to but my mind told me to get up. The reason was my cousin opened her FB account just so I could take copies of her pictures and I didn't want to hold her up. I juiced some cantaloupe, and fixed my medication for the week. Now I'm writing this blog.

I'm feeling down today, I don't want to be bothered with reality.  I want to curl up and hide from the world. I hate my life. I hope I can get some sleeping pills from the doctor Friday. I so need sleep. I hope I get the bill for my medical record so I can pick them up.  I hope I get that holiday check which will go to FB, paying for medical records and co-payment for doctors.  I got to say some more prays today.  I'm whining and I hate to be like this.

On top of all the mental shit going on, my shoulder is hurting, making typing painful.  On top of my fat, my hands, knees and feet are swollen.  I've been having these pains in my chest all day long yesterday.  It hurts when I breathe and I think I should put on my oxygen but I don't want to use it.  I think I'll take a shower, eat some Kashi Go Lean cereal then get back in bed. When I feel better and in a better mood I'll be back.

Everyone be well.

Friday, September 24, 2010

Me Verse Lupus: Lupus Stole My Life

Me Verse Lupus: Lupus Stole My Life: "I'm out of bed. Thank God. I didn't sleep much. I was tossing and turning and finally had to get up, this was about 2:30am. I got on line ..."

Lupus Stole My Life

I'm out of bed. Thank God.  I didn't sleep much. I was tossing and turning and finally had to get up, this was about 2:30am.  I got on line and noticed a new icon on my FB page.  I had clicked on to see ads Tuesday and saw that it cost after I started putting the information in for this blog. I thought I canceled, I can't afford an ad. Well, I didn't cancel. Where do i think all those hits came from?  I'm so stupid, I created another fucking bill! There goes my holiday money, that I still didn't get! I'm canceled now, I am however happy that I have a nice little following from my boo boo though.  And that I didn't create a crazy bill. I have a Me Verse Lupus page  and I welcome everyone. Still figuring it out.

I went to lay down about 4 am and read the book I have on the Nook until 4:30am.  My mate had an appointment this morning and got dress, kissed me good-bye and left me in bed.  That means I have to make it.  It wasn't that bad, I didn't get that winded. I use to be huffing and puffing like crazy after making the bed.

Surprisingly I didn't have a headache this morning. and I feel pretty good. Eyes are just heavy, there's  a peace and serenity surrounding me.  As I sat in the library this morning, deep in thought, I couldn't remember if I made a donation to the library fund yesterday.  That is weird. I usually make donations regularly, daily.  Sometime they are very loose, and frequent and occasionally regular.  I can't remember about yesterday.  That brought to mind, how when I was a kid my grandmother use to ask us everyday, "did you cocky?" When we were in the bathroom she wanted us to call downstairs, "Gran I cocked."  I don't know why it was so important, as I got older the more it humiliated me.  If we didn't go we got a shot of prune juice. I won't drink that shit today.  I'll take a enema first. today I know why it's important.  I worked with this woman once who, did move her bowls. Her belly looked like she was pregnant and she was in pain.  When she went to the doctor he put her on a fiber diet and she lost the belly in a day or two.  She was litterly full of shit.

Since I was diagnoised with lupus that's the only thing that's real in my life. And going to doctors. It's sometimes hard for me to remeber the person I use to be.  I use to be spare of the moment, lets go.  Always ready for fun.  Today if you call and say lets' go.  I have to search inside myself to find out how I feel.  Do I want to go get in the shower.  Lotion, put on sunscreen, comb my hair, put on those damn compression socks that cost $26 a pair and squeeze my legs so tight.  Is my face too hairy, do I need to use some Nair to get rid of the fine hair that grows on my face. Am I using the bathroom a lot today.  If I am will I be able to hold it before I get to where I'm going.  Should I carry a Posie (a big sanitary napkin for urin.) Am I tired, how long will I be out, how far will I have to walk. Before I hop in the shower, change clothes, curl my hair with a hot iron, and lets go.

I want to know when I'm going out the day before.  First of all if I have to get there on my own then I need to call and make arragengments with Access-A-Ride. Then I spend the evening getting my clothes ready, going through my back pack.  Making sure I have everything I would need. Then I can't sleep because anxiety keeps picking at me.

I mentioned in a blog earlier that I use to be sharp. Smart, a decission maker. Today I can't decide if I should carry a jacket.  If I should call my kids, or my sister.  Do they want to talk to me?  As I say so often no one calls me except my son, who is needy.  Is the reason why they don't want to talk to me is because I'm so pittiful, whining about how fucked up my life is.  Or is the reason I hesitate about calling is I don't want to hear about their trails and tribulations, because I suck up their problems and let it stress me out, stressed because I can't help them. Stressed because I don't want to care and feel guilty that I don't.

I haven't had a drop dead gourgous figure since I was in my early 30's but I was never the size of  this baby hippo that I am today.  I have no disipline with my eating.  I get so hungry, I'm okay if I don't start eating.  But I have to eat because of my medication.  But once I start, I'm a glutton.  Salt and sugar that's what I want. It's not in my head, one of my Lupus friend doctor told her her hunger is in her head.  Well my head tells me my belly is empty after I eat a pound of beef, a pint of mash potatoes and drink a gallon of soda.  So I devour a half gallon of ice cream, even with that I use to be particular about the flavor, fuck flavor just give the me ice cream.

And this not sleeping. I use to go to sleep after sniffing cocaine all night.  I never had a problem sleeping.  I would get up on on Sunday, eat and go back to sleep, and sleep all day. (Well I did work 40 hours a week and spend all day Satuarday cleaning, washing clothes, cooking and then going out at night drinking and druggin.)   Now I'm afraid to sleep during the day because then I'll be up all night.  My mate can't sleep with the TV on so I can't watch TV when I wake up. So I read my Nook, problem with that is I can't see over the c-pap mask. By the time I get drowsy, close the Nook, put the machine on my face, I'm not tired anymore.  I'm out of benydryl, but like I said I really don't want to take them anymore.  I have enough problems with my memory.

That's the other thing, I can't remember what I said five minutes ago.  I watch a movie and I don't know what's going on.  I'm writing this blog and  I lose my train of thought. It's not a thin line, it's a hair line between sanity and madness. But I don't want the Cymbalta, being too happy is not me either.  I've been mello, I'm really not anymore either.  I'm a babbaling fool sometimes.  My mate is always telling me to be quiet.  So glad I can write my feelings here and someone listens, sometimes.  I don't even know if anyone reads all the way to the end of my blogs for real.  Cynical, yea I seem to be more and more some days.  Others opptumistic.

My life has dissappeared.  Even if I ever go into remission I will have my lung problems.  They aren't going away.  Even with that people say, take care of yourself so you can come off that oxygen. Don't they know once your lungs are damaged there's no coming back.  I guess they look at me being grossly obese they think if I lose weight I won't need the oxygen.  If you don't know what you're talking about then they should keep their mouth shut.  The only thing that might help is if I have the pulmonary hypertention.  There's medication to help with the breathing and there'a a  possible I will be able to come off of O2 for a while.  PH is not a cureable desease, and if I have it, I don't know how bad it is.  The life expetancy for PH is short, it's a progessive, diabiliting desease.  So there is no hope of me getting even a glimpse of the life I once had.  The theft burried my treasured life deep and in a secret secluded place.

Thursday, September 23, 2010

Me Verse Lupus: My Lifes' Not So Lonely Today.

Me Verse Lupus: My Lifes' Not So Lonely Today.: "I couldn't stay away. I was overwhelmed when I saw how many people viewed my blog yesterday. And the comments, I am really touched. I am h..."

My Lifes' Not So Lonely Today.

I couldn't stay away.  I was overwhelmed when I saw how many people viewed my blog yesterday. And the comments, I am really touched.  I am happy that someone is listening and that my writing feelings and experience is helping others to feel less alone.

I went to bed last night about 7:30pm, watched Wheel of Forutant and tired to watch this new show that came on, Lupus fog can't remember the name of it. It was pretty good what I saw of it, I kept dozing off.  Law and Order came on next, always a law and Order on, but this was a new one, a 2 hour premiere.  I don't remember seeing the beginning, but I do remember we had a rain storm and it knocked the satellite out.  the next time I woke up my mate came in. I think I mumbled something to her and didn't wake up again until 2 am to go to the bathroom. That was some good sleeping, I didn't wake up again until about 6 am.   I got out the bed at 7 am but didn't take my cellcept until 7:30 I take all my pills at one time (200mg) doc told me it works best on an empty stomach, I don't do too well when I have to stop eating for 4 hours, 2 before and 2 after taking it so I take them at one time.  I'm not consistent because if I can sleep I'm going to sleep, I'm not waking up to take medication. These drugs rule my life as it is. I'm thinking about reducing my Medrol down to 10mg.  I was doing good when I got down to 6mg, I flared at 4mg so I'm considering.  My last doc, wonderful lady, pushed me back up to this damn 12 mg and the starvation returned. I won't see the Rheumy until 10/14, and he probably won't reduce the medrol until he gets the results of bed works. Maybe the pulmonary or medical doctor can share the results of their lab works.  I'll ask if I remember.

I felt good this morning.  I had the headache, it didn't linger too long.  I checked my email, blog, FB and did some work on my family news letter.  I want to finish before October.  It doesn't take long, and my family does appreciates it.  I started calling my cousins to get information from them after breakfast.  I had egg salad and sausages.  I need to get to the store for some Kashi Go Lean, love that stuff.  It's filling, full of fiber and I don't feel guilty after I eat it.

I was going to pull out the laptop and write my blog, but my mate put a Netflix in the DVD player.  I took the opportunity to spend time with her since she rarely has time for me. My life is lonely, anytime anybody gives me attention, I stop what I'm doing quick fast and in a hurry in case they change their mind.  I worked on my hospital blanket, hope I won't need it anytime soon.  You see last year I was hospitalized with pneumonia and they didn't have any blankets, they gave me an extra sheet. I was cold, can you imagine.  I didn't have insurance, so I guess those with insurance got the blankets. I really don't believe that, but it could be true.  I had my big robe but I couldn't get comfortable with it. It didn't cover me all up.  So I made a hospital blanket just in case.  It's all different shades of pinks and purples, I can't wait to use it but I don't want to go in the hospital. Anyway it's almost finished, I'm adding the last spool of pink and I'm going to put on row of black on it as a border.

Tonight I plan to take a shower around 7:30 pm and be in bed by 8pm.  Greys' Anatomy is coming on.  I love this show.  Crazy right?  Why would I enjoy a show with people having surgeries.  I like the camaraderie of the cast.  It helps me believe the doctors are human, these interns and residents are running around learning, unsure of themselves, yet confident in their medical knowledge.  They have relationship issues, I mean I know these people personally.  This past summer I rented the dvds' from beginning to end, because I only just started watching at the end of 2008. So I can't wait to see the premiere tonight.

I watched an episode of Greys' this afternoon and this young woman was dying of cancer and she was tired of the pain and suffering and asked the doctors to assist with suicide.  One doctor and her husband couldn't understand.  Sometimes I do feel like dying, but I don't want to die.  I'm lonely a lot, sad, depressed if you must, and mad. Mad because I had plans when I reached my middle age.  (I was doing pretty good financially, I still had to work. But I could buy clothes for me, not for my children, but nice stuff for myself, designer clothes and not Payless shoes.) I was hanging out with my mate at a bar, socializing, flirting with the men that wanted me. I was having fun.  I was about to live for me, doing what I want when I wanted to. Then this fucking lupus came and stole my future.  I'm mad, so steaming mad.  But that doesn't make me want to throw the towel in and take all the potassium and larazopam I have in here and go to sleep for ever.

I believed my brother killed himself. hew as 39 when he died. He had MS and was a Vietam vet, he was a mans' man. The MS was taking over his body and he knew he would need someone to take care of him. Not something he would want. I think he stopped taking his blood pressure medication and stroked. His BP was so high EMS couldn't read it. His brain hemorrhaged he bled from him eyes, nose, and mouth. He went into a coma and died a week later. My mother, she had lupus, I didn't know what she was going through at the time, God I wish I knew.  She died in 1993 before all the information that we have available was out there.  I was a member of the American Lupus Foundation but they just solicited for money, they didn't tell us what lupus was or what my mother was feeling.  Her bad heart forced the doctors to retire her.  She was unmarried, no boyfriend.  She had friends, she was active in her church, but it wasn't enough.  She attempted suicide when I was a teenager. I believe this time she had succeeded, she had a heart attack before, she had nitroglycerin. She had to know she was having a heart attack.

These thoughts are always in the back of my mind when those thoughts of suicide come to mind.  I read books that aren't that great but I continue to the end because I want to know how it ends.  I want to know how my children turn out.  I want to know what's going to happen next.  Right now the only pain, and trust me it's enough, is in my chest.  And the vanity pain of being over 300 hundred pounds.  But I'm not ready to meet God up close and personally.   I'll keep living this life no matter how bad it gets.  There is always tomorrow, and that's when I'll write some more. Stay well.

Wednesday, September 22, 2010

Me Verse Lupus: I'm tired and need rest.

Me Verse Lupus: I'm tired and need rest.: "As I predicted. It was a long day. I picked up my medication, but will need my steroids, potassium and Metropol (BP medication) around the..."

I'm tired and need rest.

As I predicted. It was a long day.  I picked up my medication, but will need my steroids, potassium and  Metropol (BP medication) around the 7th.  I called the new doctor and asked if they can push my date up so I have an appointment on the 1st.  I choose a cardiologist to be my primary since my mother had a bad heart.  And also because of the possible pulmonary hypertension. I don't know why I think these new doctors are going to find the right cocktail to make me feel better.  I am excited and have hope.

I got home about 10 am.  I read the paper, checked my emails and watched the repeats of last seasons' Greys' Anatomy.  Last year I would fall asleep on them so I'm glad I'm getting to see these repeats.  I plan to tape them with the DVR this season.  I really like this show, it's been a long time since I found a show I couldn't wait to see.  Oh, I did take an hour nap while waiting for Grey's to come on.  I was hungry but I had no energy to fix anything, not even a sandwich. I told my mate I was tired, but she doesn't understand.  She had a few friends who had lupus, so she believes she knows what I'm going through.  I can't tell her different, because she doesn't hear when she has it in her head that she knows, what she knows.  She doesn't know that lupus effects each person differently.

She did hear that I was more tired then hungry and fryed some chicken, I know, but it's so good.  She heated  a sweet potatoe and some Kale for me.  I ate a lot of the kale.  That compansates for the chicken.   She does take good care of me and that's what counts.  Later I'm going to have a piece of cake with vanilla ice cream on it and drink a can of green tea ginger ale. If I muster the energy.

For now I'm going to lay down and watch TV which I'm sure will end up watching me. I'm going to try and rest. I need it.  I am going to try and stay in bed all day tomorrow.

I will share more of my life soon. for now I need rest.

Me Verse Lupus: When love was innocent, sorta.

Me Verse Lupus: When love was innocent, sorta.: "It is 2:30 am and I am up and out of bed. Yes I'm tired, but can't sleep. That damn anxiety, I have to go get my medication today, Access-A..."

When love was innocent, sorta.

It is 2:30 am and I am up and out of bed. Yes I'm tired, but can't sleep.  That damn anxiety, I have to go get my medication today, Access-A-Ride will be picking me up at 6:11 am.  I don't want to over sleep.  My mind is busy. I'm going to run out of my blood pressure medication before my doctors' appointment with the new doctors. I have 3 options,  one see if the doctor I choose would reschedule for an earlier date, 2 get new prescriptions from my current doctor and fill them at Walmart, final option find another doctor that will be able to give me an earlier appointment.  Or just do with out the medication until I get to the appointment.  5days. That would be suicide huh? Whatever I do I can't do it at 2:42 am.

My head hurts around my eyes. Not really anything to cry about it has hurt worst.

Another thing that's got my mind racing is waiting to find out if my daughter is going to need me to help her on Friday. I told her I would pick the kids up. I knew I would do it the minute she asked.  I was going to try and be selfish and think about myself.  But it'll be good for me to get out and the kids will be happy to see gramma, I just love to hear them call me gramma.  I melt, especially with that granddaughter of mine, she is a character.  The last time I was over there, I over did and was so tired I lost all patience.  She was jumping on a friend of daughters' futon, (my daughter was holding it like it was in her apartment as storage). So I called my granddaughter to the kitchen, she knew why I was calling her.  She came to the kitchen, I'm ready to yell and she say, "yes sweet gramme, is there something I can help you with?" Come on what am I suppose to do?

In any instance what can I do at 2:46 am.  Nothing. I will have to push myself all day.  Give cause for my mate to call me lazy, because I surely won't be of any good. In fact if she hears me up she'll call me back to bed and I will toss and turn. Remember I'm a guest and have no rights.  I'll be okay after I take a shower.

Another thing that's going threw my mind is the holiday club money.  It didn't come in the mail yesterday, I was hoping it would so I could stop at the bank and deposit it.  It'll probably be here this afternoon. I'm also waiting for the bill for my medical records, probably get here today also.  So this means another trip out.  if the check comes today I'll go back out to deposit it.

I think I'm going to share a happier time this morning.  My mother sent me to live with my aunt and uncle in New Jersey, since I didn't go to school while in NY.  The second year I was there I met my sons' father. I was 16.  Back then I had an afro, red of course.  I use to go to my uncles' barber shop to get it shaped up.  I was walking home and this guy from the basketball team was walking toward me. I don't remember what he asked but he came to see me and on the first visit I preformed oral sex on him in the backyard in the screen house.  We were drinking and smoking refeer. When he left he went somewhere else and continued to drink. He passed out somewhere and I found out that he was in the hospital.  My uncle took me to visit him.  My sons' father was impressed that I hardly knew him but came to visit him when no one else did.  He told me he had planned to have sex with me and forget about me.  But that visit to the hospital change his mind.  He said I was a caring person and wanted to get to know me better. So started our relationship.  We use to sit in my aunts house in the living room watching TV every night.  His friends were mad at him because he didn't hang out with them anymore.  We had sex all over, usually in the shed in the back yard with me bent over the washing machine. Once on the back steps going to the roof of the high school.  We had to pass these kids sitting on the steps getting high.  I wonder if they peaked.  We use to go to his mothers' house and have sex in his bedroom.  He use to sneak her car and come pick me up. 

Now this is crazy and shows that I didn't care. One night he knocked on the window, I let him in and we had sex in my room that I shared with my sister and little cousin. Sick right, well we would be under the cover.  My uncle knew this but could never catch us.  He use to move the ladder around so my boyfriend had a hard time finding it in the dark. My uncle couldn't say anything, because not only were we getting high together, but I knew about his girlfriend he was seeing. I kept quiet. Before his girl friend he use to take me to the movies and feel all over me.  I even had sex with him.  He was cool, I thought back then. He was my uncle by marriage.  I didn't think anything was wrong with it.  I didn't like it and I wasn't happy what he was doing to my aunt but the means justified the end.  I wanted his back up when I went to my boyfriends house.  He even covered when I would say I was spending the night at my girlfriends' to be with him. He supported my refeer habit.  Even though my aunt didn't mind me smoking refeer or drinking.  In fact she would buy me beer and wine. I didn't have a problem with him at all. He was the closest thing I had to a father and I loved him till he died.  I'm sorry to his daughters who are reading this.

I remember having sex with my boyfriend in the woods on this off white blanket, with red roses.  Now he was going in and out of jail.  But I paid no attention to that.  I got pregnant and I'm sure it happened when we were in the woods.  I went back home to  my mothers' for the summer.  Her friends' son came to see me and I told him I was pregnant I was less then 3 months.  He offered to pay for me to have an abortion.  I refused, I was in love with my babys' daddy.  I was so stupid, I had a crash on this boy since I first met him.  He was the first to touch me. It was my chance to have him. I didn't know that man was going places.  At the time he wasn't any different then anyone else on the streets he was selling drugs, not even real drugs. 

My son's father came to NY to visit me for a week.  My mother wouldn't let him near my room and when we went to my brothers to spend the night he wouldn't let us sleep together.  Little did they know I was already pregnant.  After he left we had that  black out in the summer of 1977.  I was reading Alex Haley's Roots by candle light.   By the end of the summer my mother realized I was pregnant. My wanted me to have an abortion, I told the father and he told me to do it and to come on back to Jersey. I was almost 4 months pregnant and they were going to have to induce the labor.  On the morning of the abortion I saw my sons' hand move across my stomach.  I  couldn't do it, when my mother saw me laying across the bed she told me to hurry up.  I told her I couldn't do it and as if on clue my son moved his hand across my bell. She told me to get out.  I called the father and he said he was coming to get me.  I waited in the Port Authority all that day.  Having no place to go I, when he didn't show up, I  went back home. I didn't know if my mom was going to let me in or not.  But she did and fed me a plate of beef stew over rice.  3 months later I gave birth to my son he was premature and had surgery.  His father was in jail. My son became my mothers heart.

My sons' father said his sister told him not to come because my mother might put him in jail. I was calling him and he wasn't answering my calls.  When he finally called he was in jail.  I didn't know he was doing heroin.
When I took his son to meet his mother, she screamed he was the spitting image of her son.  She pulled out a blanket for my son to lay on.  It so happen to be off white with red roses. That was an omen to me. The blanket we used he left in the woods.

 When he got out I had my daughter and we made plans to get together and live as a family.  We spent the night in a motel and the next a night at his mothers' house.  This was the last time I saw him.

I guess this really wasn't too much of a happy story.  I told what happen to our relationship.  I didn't tell how we were inseparable in school. How we walked home hand in hand in a flash raining storm and got home soaking wet. One night we hitched hiked from his house with this couple that was a bit crazy, and after they dropped us off a pack of dogs were barking at us.  he put me behind him and was ready to fight these dogs, do you believe these dogs back off. He beat this poor kid up so bad for touching me.  I feel bad about that today. I didn't tell about the movies we went to, the Steel Pier in Atlantic City. We were going to go to the prom but he didn't think I wanted to go, yet didn't ask.  he found out the day of the prom and said his mother would of paid for us to go.

He went to jail for 25 to life. I think he's up for parole soon.  He was the love of my life and I use to wonder what our life would of been like.  But that's that shoulda', woulda' coulda' shit.  My life is what it was. I do remember the time we spent hugged up watching TV together, when dreams could come true. I can't help but think no one ever loved me as much as I loved them.  I keep singing that song.

Tuesday, September 21, 2010

Me Verse Lupus: Meltdown day and rambiling

Me Verse Lupus: Meltdown day and rambiling: "I was sleeping so good this morning. My c-pap machine wasn't on my nose correctly and my mate woke me up to have me check if I had water in..."

Meltdown day and rambiling

I was sleeping so good this morning.  My c-pap machine wasn't on my nose correctly and my mate woke me up to have me check if I had water in it.  I had waster and explained to her if air escapes it whistles.  I went back to sleep and the phone rings, her mother calls to say Access-A-Ride is outside (the bus that takes me door to door for $2.50 each ride.  It's for persons with disabilities.) I schedule an appointment for tomorrow at 6:11am.  I go upstairs to tell the driver it's the wrong day.  Man you know how hard it is for me to sleep.  I went to bed after midnight, I was having a good snooze.  I didn't even get up to go to the bathroom until I got up to tell the bus to go. Of course at 7 am I can't get back to sleep and the tossing and turning starts.

No headache, maybe cause I had one last night.  I took my Claritan and Nasonex.  I had a thumping headache, I guess it's because I was sleep, until my mate came in and she woke me up.  She doesn't care, she has no problem sleeping.  I tip toe around in the morning so I won't wake her.  I wait to brush my teeth and wash my face, unless I have to go out. But her, she turns on lights, and makes noise.  I think I said it before, it's her world and I'm just a guest.  Well anyway, I took an Aleve.  I think that help me have that good sleep.  I only wish I could of gotten 8 hours out of it.

My back is hurting in the chest area and I also had a pain in the front of my chest on my left side. They are dull pains and hopefully will pass.

My oldest daughter called last night.  She says she realized she hasn't spoken to me in a couple of days.  She has the kids in one of the best schools in Brooklyn, she has someone to take them to the after school program everyday except on Fridays. She asked if I could take Access-A-Ride to the school pick them up, then take a cab to her house. I really don't and told her I would think about it. I love my grand babies and would love to see them.  But I don't like having to be responsible every week.  I don't want her to have to change their schools.  I know I'm going to do it though. Well after she asked me about helping her on Fridays' her break was over.

We didn't go out yesterday. My mates' friend had a problem with her car so I was dressed and ready to go no where. Oh well. I did have a melt down yesterday.  I need a perm in my hair, usually I do it myself, but it's tiresome. Putting the perm in, let it sit, then bending over the sink to rinse it out, that's the problem.  It takes several washings to rinse out the perm.  Then add the conditioner, wait, then rinse. But still not finished, I should blow dry it, that's too much so I comb it out and wrap it wet then tie it up.  When it finally dries I grease it.  It was a lot of work when I was healthy now it's just too much. I can't afford to have it permed outside. It itches bad.  So cried because my hair is getting thick, which it has always been.  When I got sick it started thinning, so why the hell am I crying. Because it looks dead, dry and listless and there is nothing I can do about it.  I'm crying now because the Access-A-Ride situation is stressing me, my hair is stressing me, my having to go to the clinic tomorrow to get my meds is stressing me.  I'm worried about having enough meds to hold me over until I see the doctors next month.  On top of that, I had a holiday club account that matured yesterday and they were suppose to transfer my money in my checking account and they didn't. They said it was set up to mail me a check.  I counted on that money to pay for my meds, and for the medical records I ordered.  I'm stressed because I know my Fridays are going to be obligated again.  It's days like this that make me want to go crawl back to bed and sleep, But FUCK!  I can't sleep.

I remember being happy once, I just can't remember when that was.  I spent most of my life being sad and disappointed.  I put so much trust in other people to make me happy that I neglect to make myself happy.  I spend so much of my time trying to make everyone around me happy, I expect them to want to t do the same for me.  When that doesn't happen I get sad because the people I put my faith in disappointment.  When I was healthy I would go out find someone to flirt with and have an affair.  New people open doors for new opportunities for happiness.  But all it ever was, were moments of satisfaction.  Hell those encounters always just led to sex.  Good sex,  I was told my stuff would bite, but none the less it was just lustful satisfaction. I had so much sex in my life I have no idea how may people I let screw me, mentally and physically.  As tired and sick as I am I still crave sex.  Is that crazy?  I know that won't make me happy, I want more.

What the hell do I want?  I want someone to want me.  To want to make me happy.  I never learned how to make myself happy.  I don't think I deserve to be happy.  Mr. 23 years, even though he couldn't provide like I wanted and needed him to.  He spoiled me, there was no question of his love for me.  He would bring me little gifts home, flowers.  He knew I loved good chocolate and sweets, and he would surprise me with them when he was doing good.  He would fix me breakfast in bed, run me bath water.  He thought of me first, I came first when he wasn't chasing drugs that is. 

The mate I have now,  is a good person, but lacks the spoiling thing I crave.  She tells me to be thankful, which I am.  But you know how, when you first meet someone they do everything to seduce you.  Then when they have you they take you for granted and don't do those little things for you.  That's her.  She sold me dreams too.  Talking about taking me on a cruise, taking me to see plays and doing things.  I got a passport so I would be prepared.  It's just for ID I ain't been no where and I probably never will, now that I'm sick.  When we got together she gave me surprise gifts, now she buys me gifts but I pick it out and she pays for it.  I'm not worth her time to go and get me something special.  She use to say she likes flowers, the way they smell.  I never get flowers from her, she says it's a waste of money.  Just once I wish would let me know she was thinking about me with a surprise.  She'll bring home a tee shirt or jacket the guys in the bar would sell but it's not like she went out specially to get me a gift.  I guess I sound ungrateful and selfish.  Like I said I think about her, well use to when my money was better.  I took her to plays, on a boat trip and brought her gifts and surprised her.  Let me just stop, I'm not special to anyone but me so I need to just let all these thoughts go and find a way to make me happy.  I hope I get over this weepy morning of self pity and end up having a good day.

Monday, September 20, 2010

Me Verse Lupus: The moldmoblie, lupus and COPD

Me Verse Lupus: The moldmoblie, lupus and COPD: "I just wish I can have a real good night sleep. I had crazy dreams last night, then I remembered I ate some almonds before I went to sleep. ..."

The moldmoblie, lupus and COPD

I just wish I can have a real good night sleep. I had crazy dreams last night, then I remembered I ate some almonds before I went to sleep.  I feel okay, no headache, the weather is comfortable. It's early of course. 6:40 am been out of bed for about an hour. I'm tired but I don't want to lay in bed tossing and turning.

I want some kind of normal life again.  I haven't been out the house in about a week and a half except to go to the bottom of the steps to get the bills, I mean mail. My highlight is checking my email, FB, this blog and my online support group  to see if any one left me a note or comment.  I'm not going to have an I'm so lonely day.  My baby daughter called me and I spoke with my grandson who cheered me up.  My daughter told me someday she's going to be the one to take care of me.  Sweet thought, I hope I live long enough for her too. My sons' phone is off because he can't have it in rehab and they are monitoring his money.  I can't help him with that bill anymore. My oldest daughter she told me Friday her phone isn't working so I haven't spoken to her.  I'll write my grand babies a letter.  I owe my oldest grandson $20, that I haven't spent.  The last day I left there I didn't have any money in my pocket so I borrowed from him. He gave it to me without any hesitation. I guess he knows as long as I owe him he won't be broke.

My mate has a friends whose birthday was back in August and she was going to take her out to eat.  It was postpone several times.  We were suppose to go last Friday but if I don't get dress early, I don't feel like putting on, outside clothes late. So we're suppose to go today.  My mate wants to go to this restaurant out by Five Towns, it's across from the shopping center, by the bay.  It's off the dock, boats can pull up and dock to come in and eat.  Nice place, food is good but menu ain't that great for me.  Well that's where she wants to go. It's in the 70s' on the bay it will probably be in the 60s'.  I don't think it's going to be comfortable but I'll keep my mouth shut because I don't want to get cussed out.  There are nice restaurants all over Queens that I've gone to, but she only goes to the ones she knows and ones other people tell her about.  I don't know shit remember. Anyways that's the plan for today.

I was thinking about when my breathing started to become an issue.  Back in 2007 my mate brought a 1991 Honda Accord from the same friend I was just speaking about.  The car needed some repairs which we didn't get done until after I had my hysterectomy in the summer of 2007.  So I think we didn't get the car on the road until around November or so in 2007.  The car was flooded and was full of mold.  I tried cleaning it out and I covered the mold smell with air fresheners.  I was just  happy to be driving again I didn't care. The cars' transmission was shot, I couldn't go over 35mph, the speedometer was broken. So how did I know when I went over 35mph? The car turned off.  The drivers side window didn't open. I didn't care I was driving.  My breathing was getting difficult, so I kept trying to stop smoking. I would wear the patch and take it off when I wanted a cigarette which was usually when I went to the bar and started drinking and sniffing. Finally I stopped for a few months, besides for the last year I was down to about a half a pack a day. Good considering I've smoked for 40 years and in some of those years I smoked, sometime two packs a day. I've quit when I was pregnant and different times over the years.  Whenever I stopped, my breathing always got better.  My breathing wasn't getting better this time, in my opinion it was getting worst.  Since I wasn't feeling better the fool, me, decided to give into temptation and started smoking again.  I figured I had COPD or lung cancer or both.  I knew something was wrong and I didn't want to know and I just wanted to live my life and enjoy what I had left.

That summer, I spent a lot of time out in the sun.  When I was at work I would take smoke breaks where the sun would beat down strong.  I don't know why I stopped using the sunscreen that year.  I guess since I didn't have lupus as I thought I was too pass the age of being diagnosed with lupus. I figured the sun wouldn't hurt me.  I mean for years I've suspected I had lupus and the doctors kept telling me no.  In fact the last doctor I saw before I got sick told me my triglycerides were high but didn't check further nor did he suggest that I do.  I didn't have any insurance then so there wasn't anything I could do.  I couldn't afford doctor bills. I didn't think it was serious, I probably needed to take vitamins so I started taking multi-vitamins and B12.

Then I got this rash on my shoulders and ears.  We took the grand kids to the Aquarium, we spent the day in the sun, again no sunscreen.  I was tired, totally drained for my grandsons' birthday.  I pushed myself.  I went home and the next day went to work.  I was having a hard time going up and down the steps, to the point that I was literally gasping for breath.  I decide I would go to the ER that day after work. I figured I had a virus or something and I would get some antibodies.

I drove the mold mobile to the Queens Hospital Center, and found parking right on the corner, that was luck or God watching over a fool again.  I was praying I wouldn't have to walk too far. I went in and told them I couldn't breath, they checked my oxygen level and I was hypoxia, my oxygen level was 75, they put me on oxygen right away and admitted me. They suspected but didn't confirmed anything.  They questioned me about my environment, my eating habits, family history.  I was in the hospital for a week and when I went for my follow up appointment lupus and emphysema was confirmed.So began my new life as chronically ill person.

Sunday, September 19, 2010

Me Verse Lupus: God Protects babies and fools.

Me Verse Lupus: God Protects babies and fools.: "First, before I get side track and forget, let me thank those for the compaliments on my new page look. I guess everyone can guess what my ..."

God Protects babies and fools.

First, before I get side track and forget, let me thank those for the compaliments on my new page look.  I guess everyone can guess what my favorite color is.  Purple is the color of royalty and my birthstone.  I just think it's pretty, sometimes soft, sometimes bold something like me.   I have no confidence these days.  My ego needs stroking, thanks for stroking.  That's why my grand kids are the best.  They tell me I'm the best and one even said I rock.  Love those guys, but I do need a rest.  I'll write them a letter, it helps them read.  My oldest one is learning script.

I went to bed at 6:30 pm last night, not to sleep but to layed down.  I went to sleep about 8:30 pm, didn't sleep through but I think I rested well.  I got out the bed at 6:30 am, so that's 12 hours in bed.  Still tired though.  Eyes are heavy but I don't thing I have much of a head ache. It should be a good day, my mate usually stays in on Sundays. I have 4 Netflix movies we haven't seen.  They sent me an extra one, I guess it's a bonus for a loyal customer.  Been one for 4 years.  I remember when I worked downtown Brooklyn these guys use to give out these flyer's for videos in the  mail.  I thought that was crazy, wait to get movies in the mail.  I love it. I just hope it's enough chill in the air so I can work on my afghan, I'm only putting just one and a half spool of yarn on and then bordering it with a row of black.  Can anyone guess the colors of it?

I'm happy that there are people reading this. Like I said my ego needs stroking.  I've been told repeatedly that some of you admire me for putting my story out there like that.  If I wrote a novel it would be the same thing, only, maybe I might get Oprahs' attention and get paid.  But I guess I don't need no money, I'll just spend it on a house, car, helping my family and having a big family reunion for a week of an all expense paid vacation.  I would love for us all to get together and build close tight relationships. I write a newsletter trying to keep us all in the loop of each others lives, but it's not the a same as giving a hug to each other and sharing a good conversation.  My family is so scattered, some on the west coast, and east coast, we have family in Alaska and New Zealand.  We have family in the south too. In fact we have a first cousin of our grandmothers who will be 100 this year.  It would be wonderful if we could all get to our family hometown in Charleston, South Carolina to celebrate her birthday with her. Dreams, despite my health and the life I lived I still dream. I guess that's because I always see the glass half full.  Maybe that's why I run out of shit.

I spent my whole life dreaming about the kind of life I wanted instead of making it. Yesterday I spoke to someone who told me about someone who works at home.  He has an office in his house and he goes in it at 8- 9 in the morning works with the door close, comes out has a lunch break and goes back until 4-5 o'clock.  That's discipline! That's what I planned on doing with my writing.  Work like it's a job.  But, I don't have a schedule.

Back when I moved into my mothers house after she died.  I made a little office out of my grandmothers' room in the attic.  I would come home from work, change clothes and go in the attic and write. Mr. 23 years would come home, buy food and cook dinner. While cooking he would be in the basement smoking his crack, me in the attic smoking refeer and writing.  The kids were out running the streets. I should of been spending more time with them.  But I believed, I was writing our future. We were the poster family for dysfunctional. I didn't have a clue how quickly they were growing and how time was passing us by.  I knew there were no do overs.  I fucked up trying to make my dream come true instead of helping them prepare for their dreams. I use to work on that novel all night. 

When I emerged from the attic I developed a friendship with my mans' cousins' friend.  We became close and bonded because we were both in our early 30's and orphans with 3 children with 3 daddies. While our men were out smoking crack we started hanging out in bars drinking and sniffing coke. I had a MVP, brand new from the money my mother left for us.  I was drinking and driving, I was so high sometimes I didn't know how I got home.  In the mornings I would look at the car to make sure it was there and there weren't any dents in it.  They say God watches over babies and fools.  I was a fool, I thank God I never killed anyone. The car would be parked in the middle of the street or blocking my neighbor driveway but it was always there.

I always thought I was a good driver. When I lived upstate.  With my sister-in-law sister we use to hang out with a friend that use to let us drive their car.  This one time we drove up to Albany to a party and coming back on the highway I was driving, drunk.  Tminute.  I was going 80mph, I did the turn on two wheels, on a cliff and our fool asses were laughing. I didn't have a license and the cops stopped us shortly after, back then our pictures weren't on the licence so I used my girlfriends.  My son was born on her birthday so that was no problem and I guessed the correct year.  If it was today I would of been locked up, I'm sure the cop smelled the liquor and refeer in the car. He just told us to be careful and let us go. No speeding ticket either. Funny today with the meds I'm taking I'm scared to drive and I'm not impaired like I was back in the day go figure.

I finished that novel, but never edited, and when I sold the house I put all my writing in storage and lost it all.
 Just this past summer my girlfriend sent me a copy and I plan to open it up and see if I can edit and make it marketable.  But first I want to finish the one I've been working on.  I think it's good and some of my friends and co-workers who have read the first draft encouraged me, they say it's good and they are impressed.  Maybe I'll put it on a blog, now that I'm getting the hang of this.  Then leave the last four or five chapters off so you would have to buy it to find out how it ends.

This is another good thing about this blog it's getting me writing again.  Yesterday I started writing words to put together in a poem. I'll share if something materialize.