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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 4, 2010

S.L.E. Lupus Foundation | Lupus Treatment, Support, Prevention, Research

S.L.E. Lupus Foundation Lupus Treatment, Support, Prevention, Research

Day Eight- That sneaky Bastard

I couldn't have chocolate or peanuts when I was growing up because my hands would get a rash. It usually happened around Easter. Mommy use to get us chocolate bunnies and we had plenty of candy around. We also went to church dressed in our Easter finery and walk in the spring sun to church. Hummmm! The SUN! This went on for years the rash would come on my neck, under my boobs, even on my thighs. One summer when I was about 14 or 15 we went to the beach and I lay in the sun all day trying to get a deep tan. I broke out from head to toe. I had this little fine prickly heat looking rash. My skin was tender to the touch, swollen red but it didn't itch. I remember it vividly. We all assumed it was a heat rash and did nothing. When I got diagnosed and looked up the rashes. I saw the rash. I never had the malar rash but I had the "ick" as my brother use to call it I would have a rash on my hands moving up my arms, it was very peculiar that I only broke out during the summer.

I use to be tired all the time but I thought it was normal considering that I smoked the reefer all the time. I was a pothead; I woke up lighting a joint and went to sleep smoking a joint. So I always had the munchies, giggles and would always be ready to go to sleep.

I had this rash on my leg in the shin area, the dermatologist, gave me all these creams that weren't helping. Once I used fresh aloe on it and it cause pus to ooze out but not heal. Some of my Haitian employees believed someone had put voodoo on me and had their family send me stuff to fight the voodoo. Finally the dermatologist gave me a cream after several attempts failed and said, "If this doesn't work I'll do a biopsy." The cream worked. It had steroids in it. It took several years before it cleared up I'll say almost 10 years. The bones in my shins are painful to the touch still today.

Another incident was when I was working on-call for the home care agency during a snow storm that crippled NYC, the home attendants were calling because they couldn't get to work. Clients were calling because they didn't have anyone there to help them. Not to mentioning families that couldn't get to their love ones that the agency was responsible for. I was stressed; I couldn't get to all the calls. The boss was calling me, the other coordinators were calling and helping as much as they could but it was my responsibility to ensure that everyone was taken care of. The next day I broke out all over my body, even on the bottom of my feet and the palms of my hands.

I went to the doctor and it was the antibodies I was taking.

My hands always swelled and my ankles and knees always hurt. I blamed it all on playing handball as a teenager. The doctors just chalked it up to arthritis. When my mother died I moved into her house and became a patient of her doctor. I told him I suspected I had lupus, he gave me a complete blood work up and said no signs of Lupus but I was positive for syphilis and they did this test to confirm and it was negative. This was a false positive result.

Now check this out I was about 33/34 I got sick it was an ear infection, I was given antibiotics that contained sulfa. I was hospitalized. There are 11 marks to be diagnosed with lupus. I had rashes my whole life, photosensitivity (from the sun); I had the false positive syphilis results, allergic to sulfa. I was always tired and would sometimes spend the whole weekend sleeping, but I usually worked two jobs. I also had joints swelling and pain. I knew I had lupus but the doctors couldn’t diagnosis it.

Four years ago I had a hysterectomy; everyone told me I was going to feel so much better after. I waited to feel this good feeling that never came. I had insurance, I was losing weight but I wasn’t complaining about that. I told the doctor I felt icky, just tired weak. He told me to exercise. When my blood work came back he said my triglycerides were high. But didn’t run any test or anything else. He told me to take vitamins. Damn!!! I was in a flare at that time, had I started on the steroids then maybe two years later my lungs wouldn’t have been damaged by lupus.

I wish I knew what all they markers were. You see I saw different doctors over the course of my life and the symptoms I was having were put together. I was never referred to a Rheumatologist, hell I didn’t know what a Rheumatologist was. This campaign to make people aware is good. I may have been able to get help earlier. What’s done is done.

Friday, September 3, 2010

Day Seven- Blah!!

I know why people consider suicide.  To feel alone, unloved and unappreciated.  When you are so sad and it just seems to be a reason to live another day.  I know that feeling.  It's so heavy, weighs me down more then the 300 pounds I carry on my body.  there's a lump in my chest, my eyes are full with swollen tears.  My stomach aches.  It would be so easy to take the pills I have that could cause my demise.  But somehow, someway I always refrain and live another day that brings an illusion of happiness.

I guess it's my fault, I don't verbally express myself.  I expect people to know what I'm feeling.  I use to write love poems when I was younger and I always wrote that love was understanding each other needs.  When people are in love, I thought they absorb that persons' being inside and they are an extension of ache other therefore they learn to know each others needs and feelings.  But as all my writings in this blog expresses I never had that deep passionate love, where someone me me as important to them as they are to themselveses.  I always give all myself and be come disheartened when love I offer is not reciprocated.

I do appreciate what I have, someone who make sure I eat. Picks up after me,washes my clothes and more.  I don't have the right to complain about anything.  I'm a guest and should never forget that.  And I do often, I call where I live home, I call it my bed, but in reality I have no rights or say.  When I was a child I wanted to be a grown up.  Now that I'm 50, I should be grown.  But it ain't happen yet.  My nerves are so shaky cause I don't know what kind of mood those around me will be in. My voice and opinion is insignificant.  I can't walk out there door without being questioned. I hate my world at times.

There's no one for me.  My feelings are not considered unless it's not an inconvenience. My needs are my problem and I got to deal with them myself.  Do you see why suicide is sometime considered.

My ex of 23 years use to say, Feelings they come and go.  So true for everyone but me.  I let things grown in side me festering and eating me up from the inside out.  I'm not a fighter, I'm a writer and I write my hurt, my anger and my temporary feelings.  For years I wrote in books and never shared.  I just wrote to release my feelings. 

Now I have this blog to write my feelings and share with you who are reading this.  Today I feel this way tomorrow I might get over it and feel different.  These are the ramblings of a woman full of depression, anxiety, fear and anger about the fate I find myself in.  But never mistake my weak moments for weakness.  I like to read good books, but sometimes I start a book that ain't that great, I keep reading because I want to know how it ends.  So, I may not be happy where the book is going, a bad paragraph, chapter but it's part of the story and I will continue to read to see how it ends.  I wound never stop reading before it's over. Nor will I end my life before God says it's over.  No mater how much I mention suicide.

Thursday, September 2, 2010

Day six- Memories of youth

I feel okay this morning. Tired and that damn nagging headache is here. Took my Cellcept which usually makes the headache go away sometimes. But it seems to be lingering this morning. I slept most of the night only got up once to go to the bathroom. Woke up about 6 am that's late, I laid in bed until 7, my mind doing its thinking.

Since I’ve been sick I haven’t had health insurance and I couldn't afford the premiums for coverage, well maybe I could but on top of the premiums I would have a co-pay and they didn't cover the meds. So I continued with the hospital plan. Now there's this new program through the healthcare reform where I'll be able to get health coverage at an affordable rate. Only the hospital I go to is not in the network. I like my Rheumatologist and would have like to keep her. I told her this and she said it was okay she will help me find good doctors. I should be happy I will be enrolled in an excellent hospital. But I have a problem with doctors. Some of them can be so impersonal. They read the records and half hear what you say.

Before I was diagnosed with lupus I guess they thought I was a hypochondriac. Now they take for granted my symptoms and just say it's the lupus. My current doctor explains things to me and listens. One good thing is that I'll be able to get the heart catherization and find out if I have Pulmonary Hypertension. Then I can get treated and may be this itchy throat and cough will subside. Maybe I will get prescribed some good pain killers and real sleeping pills. My old doctor is in the network, he use to give me codeine, I slept like a baby with it.

I started thinking about this blog. I feel like Julie from the movie Julia/Julie. Waiting to see comments and followers which aren’t happening. Well I guess 6 days, Give it time, huh? Some of my family and friends have read and they commented personally.

Today I’m going to reminisce about happier times. When I was a little girl my sister and I were left home with my grandmother. She had us on a routine. Breakfast most days freshly cooked, pancakes, French toast, grits with tuna, bacon, liver or sausage, home fry potatoes, or hot cereal in the winter or cold cereal in the summer.

In the winter we played on the side of the table against the wall with the window. We had our boundaries; we could play under the table on our side, but never on the other side. We could play from wall to wall but not past the piano. Never ever in the living room.

Gran would watch her stories, cook dinner, clean and every now and then yell at us for yelling or doing something we weren’t suppose to. She kept a hawk eye on us.

In the summer we were sent to play in the backyard. If it was laundry or gardening day we played in the sand box, which by the end of the summer became dirt. We made some really good mud pies. Other days Gran would put a sheet over the clothes line, we had one of those square polls that stuck in the ground and had several lines from every corner to hang the clothes on. She would give us a blanket for the ground and we would play house. On other days, she would put the sprinkler on or put the hose over the clothes line. My sister and I would catch butterflies, my sister would use the cup hand technique and I used the pinch the wings. We would put our Monarch or white moths in a mayonnaise jar that had holes in the top, Gran would give us a flower to feed them. I think about that now and it was cruel. Just like the jar of lighting bugs we caught at night. We should have let them go before we went in. I remember when we found them dead we would open the jars and shaking their deceased carcasses in the trash cans. As good Catholics we really should of said a pray. Forgive me God for imprisoning and killing your creatures. Today I don’t like killing any insects. Well, roaches, mice and rats are an exception; I don’t think God created such nasty things.

Around noon, Gran would give us lunch, a sandwich and ice tea. After she would put us down for a nap. When we woke up we took a bath and put on clean clothes, had dinner, then sat in the living room or porch to wait for our mother to come home so we could go play in the front of the house.

We got to play with the neighbor kids and ride our bikes. We weren’t allowed to play in the street, or go past the three houses on the left or the three houses on the right. I hated this. The only consolation was that we got to stay out later then the next door neighbors. Mom use to sit on the porch drinking her beer and smoking her cigarettes. A bunch of us use to sit on the steps playing games like school where you moved up the steps when you picked the hand with the rock from the teacher. Who ever reached the top step was the winner. We did play hide and seek, but when it got dark the game was over for my sister and me. Eventually we got to play in the street and punch ball became the thing. And we got to ride our bikes all the way to the corner.

Mom overprotected us. Once my friend, she really wasn’t convinced me not to get on the school bus and to walk home. I did and nothing happened. Before that I use to be scared to do anything bad. I listen to this girl. She lived around the corner and was a year older. I thought she was cool I wanted to be just like her and I believed everything she told me. I was her joke, She told me she went to the movies and saw Superfly, years later when I saw the movie for myself I knew she lied. She told me that the gay guys that dressed like women in the neighborhood had hair on their private parts and that they were really girls because boys didn’t have hair. Another friend later told me boys had periods. (I remember that haunting me as an adult when this kids was watching TV in my house and South Park was on and the boys in the cartoon were talking about having their period. I got so angry because I was a gullible child.) Later another friend told me that her boy friend pulled out after they had sex and the sperm sprayed all over the ceiling and walls of her basement. Another friend told me that she was having sex with all these guys,

I believed all this stuff. I didn’t ask mom cause you didn’t talk about this stuff. So it was up to me to find out for myself. Mom told me once my reputation was bad that’s all anyone would know. She said a man can wallow in the mud, get up take a shower and no one would remember. But a woman, they will talk about her for the rest of her life. I kinds’ knew what she meant, but I was curious, when her friend son took me in his bed room with the baseball stickers on the wall and all the boys stuff around and told me to pull down my pants and put his penis in me, that was it. I would do it with who ever wanted it. And they wanted it. I enjoyed the touching but I always thought here was more to ‘cumming’.

I wish someone would of told me how sweet sex would have been had I waited to do it with someone I loved.

After I was a mother, I meet, well I knew who he was, his father live two doors away. I played with his son. I use to watch him drive through the block in his GTO, with its supped up engine. He wore a poncho and cowboy hat like Clint Eastwood in the Good, Bad and Ugly. He approached me. He didn’t give me any illusions, he had a woman and I was just pussy. Fine. He took me to bars, brought me my reefer, even cocaine occasionally. I went with him to his brothers’ house one and the kitchen table was full of cocaine.

The best thing was that he had his own house. Not a bedroom in his mothers’ house. When we had sex he made me touch myself, and ride him until I climaxed. He taught me things about my body I never knew. He would have me get on top of him and make me count all the times I came. The funny thing about it he never had a climax.

After I moved up state and lived with my daughters’ father and played all kinds of sex games with him and mastered the art of masturbation, When, I saw the old man again, I got frustrated because he stopped me before I had my first climax because he almost had one too. He was human and I no longer found him exciting. That has always been an issue with me I got bored after a while. I always wanted something new.

Wednesday, September 1, 2010

Some more to Day-Five

This is about me.  What I feel, felt and think/thought.  I figure if I express it in an open forum, even if no one reads it, I put it out there and maybe I"ll be able to let it go.  If you can't handle the truth, as I experienced it, then watch a movie. Don't read this, and don't stress me! I am moving forward and live what ever quality of life I have.

I'm 50 years old and I've seen, done and experienced a half of century of living. It wasn't all bad.  There were plenty of good times, some scary and I can't wait to share it all. I hope to have a few people ride through this trip down my "Highway to Success" with me. (one of my poems)

I wanted excitement and I had some, I've drove a car while it was on fire.  My house was raided and I spent a night in jail.  I had nights without heat. Went to bed hungry.  I had parties with tons of food and liqour bottles that never went empty and everyone was drunk.  I lived in hotels with pimps, prostitudes, transvestits, drug dealers and hustlers, when my two oldest children were babies.  I mean there are so many things I've experienced and if God is willing I will write for months to come. As my health goes through changes, my grandbabies grown and my children keep developing.   All of you are invited to enter my world.

Day Five- I was Gooood!

Day Five- I was Gooood!

After my 3 am toss and turn and few line post I woke up at 8 am. I feel pretty good today. My mate is being nice. I only got yelled at once, because I suggested a word. I know I know I annoy her. I try not to say anything but I just keep opening my mouth. You see she's perfect and if you say something wrong then damn you and that's my problem. But forget it. This isn't a relationship blog.

I was thinking about my life, they say when you're dying your whole life passes by you. I didn't go to college but I entered the working world when a High School diploma was sufficient. I was successful as far as employment went and I made a lot of money. I just didn't save and I had an addict for a man. I would give him money to hustle by reselling wholesale shit. That left me always behind on bills. I was smart and worked my way up into better paying positions. If I was only smart with my personal life I could be financially secure today. I cashed in a $40,000. 401k I withdrew my money from my NY life insurance. I was making $2000 a month back in late 1980s'. Granted I was stealing money, I think it's called embezzling.

That job was great, I have the best health insurance, 11 paid holidays, 4 weeks paid vacation, we could accrue 2 weeks paid sick leave. It was a good thing. The boss was skimming and just about all of us that worked there. The IGs' came in. They seized all our records and questioned us one by one in their office. I was sweating my hands were dirty. I had children and I was to pretty to go to jail and be Berthas' bitch! The IGs' couldn't find anything but the following year the agency lost funding. When my mother died, the funeral home needed a deposit to start the arrangements. My brother was able to get a check from one of his policies, but getting it cashed was an issue. I took my brother to my bank and went to the president of the branch without being stopped. The president took the check and cashed it with no questions asked. My brother was impressed. Years ago when I was a teenager, cutting school, getting high and having reckless sex, he called me a fuck up. So I was proud that my brother was impressed.

I got another job after that in homecare, with my experience I was offered an office managers' position in another agency, and moved up to be an Assistant Administrator of 3 NYC branch offices. I was good. I increased the clientele, implemented policies. I even fired employees that shook my hand and thanked me after I took their paychecks away from them. I use to go to unemployment hearings and disability hearings and win cases. This is hard to do. I was a tyrant yet fair with my employees. I was good I was on top of my game. I was always available to my staff, very rarely was I late. I hired this person for marketing and she wanted my job, she feed the administration lies and they fired me. The first time I was a victim of discrimination.

When I was offered the Administration position I was also called by the US Postal service. I took the Admin position. Funny when I was unemployed for over a year, well I was working off the books, I got another Home care position, but it wasn't for me and I was last hired first fired when they moved into the Empire State Building on 34th St. They needed my salary to help pay that rent. Anyway I got a job through Manpower in the Postal service. I earned $25 hour and time and a half for over time, which during Christmas came up to almost 8 to 10 hours a week, plus, health coverage. When that contract ended the postal service hired me as a casual. I was working in the testing and hiring unit. I was responsible in completing this investigation paper work. It had to be perfect. The USPS would be fined for every mistake. I reduced the mistakes and was responsible for all the form and I was a temp worker.

Could you imagine what I could have done had I gotten a degree? I went to business schools. I attended meetings to negotiate deals. I listened I learned the business language and excelled.

It's funny I wanted to stay home and write. Now that I'm home and can write I miss working. I wouldn't mind going back to work, but this lupus keeps me in fuzz. Sometimes I can't even remember a word to complete a sentence.

Now you must be wondering I made all this money working where is it. I'll reveal this in the blogs to follow.

Today I went to Staples and racked up on school supplies for the grandkids. They are all set. I feel good when I take care of my babies.

Thanks to those who have been reading. Revealing al this about myself seems to be cleansing. I'm feeling good. Like A burden is being lifted. I can take care of them.
Embrace today.

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.

Tuesday, August 31, 2010

Day Four and half- Dry eyes

That’s what my life is singing the blues one day and singing about happy days the next. I’m not writing this for people to feel sorry for me. I do want people to read it, hear me and understand me. Then maybe explain to me what this life I lived was all about.

I’m not delusional; I know my life is what it is because I made the choices to get where I am today. I know all the wrong choices I made. And to clear up a few things, so there is no misunderstanding, my mate is a good person. She cares about me and at times can be over protective and at other times when I’m feeling down or out of sorts she can be the mean bully bitch. She has her own issues, she doesn’t trust anyone, less of all me. She will do for you if it doesn’t in connivance her.

I just want more. I always want more. Prince sang. “She’s never satisfied”, I want attention, want someone to go with me to the doctors sometimes. To bring me flowers gifts. Keep promises. Take me out to eat, to a play, hell a movie. But hey this area is brining the liquid eyes and I don’t want that any more to night. I got to get it together before Thursday when I go to see the grandkids.

I had some good times. I mean my childhood was the best even though I didn’t think so because I want to have my mother and father and my brothers in our own home like a nice TV family. But I had my grandmother, who raised us. She was mean so I thought. She use to tell me when I thought I was slick, ‘you know I’m smarter then you’. She was my conscious and I find myself always quoting her. She use to tell me to find a man that has money, I ignored her of course because I wanted love. I was in love with love and had this vision of what love was. She was once like me, wild but of course at the time I didn’t know that. As far as I was concern she was crazy. Ha! I guess what goes around comes around like they say, my grandkids, 9, 7 and 6 think I’m crazy, they love me to death but still think I’m crazy and they can get over on me. Boy do they try and play me.

Anyway, I had my aunt and uncle who live in the house. My mother and aunt paid the bills and that made it possible for me to go to Catholic school and piss that good education away. I had two brothers, the oldest I more like, was in Vietnam when I was little and when he came home I was almost a teenager. He was another one of my conscious. He was not my father and I was damn if he was going to tell me what to do. Eventually we got along and I became his runner, going out to buy his nickel bags of reefer. Growing up I never had to worry about food, heat, electricity or hot water. I was sheltered from the ugliness that so many people faced in their youth.

I got pregnant a 15 had an abortion. I was living with my Aunt in NJ every morning she would fix me breakfast and next to my plate was my birth control pill. That I didn’t take. Mistake!!! Stupid!! I got pregnant at 17. The guy that was my mothers’ friend son offered to pay for me to have an abortion. He said, he never done that before and that there were plenty of girls that said they were pregnant by him and he wouldn’t pay for the abortion. I didn’t comprehend that he liked me, for more than a booty call. This guy today is a billionaire. Super stupid mistake!!! When I was almost 5 months pregnant mom set up for me to have an abortion. They were going to induce labor and I was going to give birth to a fetus. On the morning of the appointment, my son moved. I couldn’t do it. His father I didn’t know was doing dope and went to jail. When he came home I had another child and we were supposed to get back together. Then he robbed this house and killed the home owner. He’s been in jail for almost 25 years.

I finished high school second in my class and was accepted at St. Johns’ university. I didn’t have the registration fee and didn’t want to ask mom for it. Another stupid mistake and I was still 18. I went up state to live with my friend and met a man and played house. I have all intentions of going to school up there. But I got pregnant, had this baby by another man. And moved back home and broke up with her father in that order.

I meet my last baby’s’ father but that’ a story for later.

Day Four- eyes of liquid

To hell with my blood pressure, temperature and all that other stuff, it's what is and will be what it is. I'm going to try and eat better but I have no will power so I'm going to fuck up. If I was rich maybe I could hire a cook to prepare better meals. It's easier to eat the wrong things because they are prepackaged. Sometimes I'm too tired to go upstairs to get real food, (steak, rice, potatoes something heavy and fattening any way) so I eat junk, chips, cake cookies and candies. Fuck it with a capital "F"

I'm tired let me explain what tired is to me. My body shuts down, I don't want to move. Do you know what it feels like when you're so tired you don't want to even turn over in bed? When you don't want to move to go the bathroom, it takes all the energy you can muster to go. And my bathroom is about 10 feet away. I slept about 8 and 1/2 hours and napped hour before bed and I'm still tired. Why am I up? Because my mind is busy. Always thinking about what I want to do, what I need to do and what I can't do.

I thought not working would have been great. I thought I would have time to write and complete my novel. Get my poetry together in a book. I want to work on my greeting cards and sell them but tiredness intrudes. I enjoy working on my family newsletter, it would be nice to have help, to have some of the family give me a call and tell me what's going on in their lives instead of me calling everyone. It's important to me and it would have been important to our parents for us to stay in touch. Some of my family, hell most of my family we haven't seen each other in over 30 years. Sad. I get to envious of families that have reunions every year. We are scattered all over, East Coast, West Coast, the south. We even have family in Alaska and New Zealand.

Everyone seems to appreciate the newsletter except my oldest daughter. She doesn't have time to read it. I guess she can't, she doesn't have time to put her own clothes away, empty her garbage or wash her dishes.

Off track again. Tired, very tired. Maybe that walk was too much for me cause I feel really drained. Maybe it was the sun out there even though I was out early it was hot; we're having a heat wave again. When I walked in the sun it was harder, one of the blocks was full of shade and it was easier to walk. So maybe that's what it is.

What's this about liquid eyes? Well sadness has come to invade my space. Everything is making me cry. I get these feelings of loneliness and the funny thing about it, is I want to be alone. I think. I use to be a real confident and a secure person. But now my whole life seems like it was a waste and my future is bleak. I was a party girl, drinking, drugging and sexing. I was responsible, working 8 hours a day even worked second jobs in the evening and on weekends.

I was a single mother even though I had a man for 23 years. He spent his time in our relationship chasing crack and heroin. Then when he gets sober he started chasing women. Alone most of the time so I started hanging out, meeting men and sleeping with them. He had a problem with one of the guys I was seeing he was following me around with a gun. He says he was going to blow me and the guys' head off. But his friend he was with talked him out of it.

So he get sober and can't help pay the bills and the house was getting ready to be lost so I sold it and moved in with the woman, yes the woman I was seeing. If he wanted me, he could have made moves to get us a home. Instead he moved on to the woman he was seeing for about 6 or 7 years of our relationship. I was really hurt when he married her. He said he had no choice that she was going to put him out if he didn't. He said he could always get a divorce. Fuck him too. I done been done. I guess I was still living in the fantasy he sold me when we first got together. I was a fool for his bull shit for 23 years always having hope. I guess I wanted us to grow old together and reminisce about the good times and enjoy our grandkids together. But that's storybook shit. My life my world is far from storybook. More of night mare meets fantasy smacked into reality. Which are many days of liquid eyes.

Sex was my answer to affection. My family wasn't into hugging and kissing. Nor talking, everything was a secret. All the women had children out of wedlock and it went on for generations. We or at least I was told what to do and not to do. Mom told me when I got my period that the boys are going to want me to go with them and not to go. Where are they going to go, for what? So I had to find out and her friend from Elemantry School showed me when I was 11. It wasn't that great so I had to learn more. Unprotected and on a quest to be grown I has sex with every man that gave me attention. I wish I wasn't so stupid. If I could turn back the hands of time.

Monday, August 30, 2010

Day Three- A Lupus Day

My pressure this morning at 5:28am was 139/84. I didn’t excise. But I plan to walk to the bank which is 3 blocks, I may try to walk back or take the bus. I plan to go to Barnes and noble. Hummm! I’ll keep what I have to do there to myself. I didn’t eat my cereal yesterday. I did have blueberries and cottage cheese. I ate some frozen grapes, had a few jelled candies, some tuna salad and crackers. Then came the evening I had potatoes salad, stewed lamb chops and string beans and a slice of German pound cake, okay a chunk of cake. A bit more blueberries and cottage cheese, and some crumbs of pretzels. No it may seem like I really fucked up but I tell you the extras that I ate is nothing. I usually would have eaten the whole cake over the course of the day. Instead of cottage cheese it would have been ice cream and the pretzels would have been a bag of chips. So I’m proud that I didn’t binge as I usually do.

When I go to Barnes and Noble I will have me a Flappachino with extra whip and caramel. I will use all my will power today not to eat anything else in the sugar department.

Change of plan. I walked! Four blocks to the bank. I stopped, turned up the oxygen but did it! The perspiration, no sweat was pouring down my face, causing the sunscreen to get into my eyes. I didn’t take any paper towels, nor water. I had my parasol and my iPod was playing Herbie Hancock. In another time it would have been so relaxing. In this case the music kept me going, I wanted to walk back but knew I wouldn’t make it so I sat and waited for the bus. I got home and was done. I called access-a-ride and canceled Barnes and Noble.

I’m having a Lupus day. Tired but can’t sleep because my mind is busy. I have so much to do, and unable to focus to do it. I’m worried about everything, worried that I’m going to die and I’m not ready. Well who is ready I guess? There are so many things I wish I could do but right now I don’t think it could happen for me. I want a real true love. Someone who would considers my feelings, and not treat me like an inmate, or possession. I’ll never have a wedding. I may never go on a cruise or visit anyplace outside New York.

I’m worried about my children if something should happen to me. My son is so alone in this world. He’s struggling to find happiness, he suffers not only with his mental health issues but with the same sadness I suffer with. My youngest daughter is like her father, wanting the easy way out. She’s spoiled and wants her way and if she doesn’t get it she has a tantrum. She is so self centered she always trying to leave her son with someone. My middle daughter she wants to succeed so bad that she doesn’t know that time and building memories for her children are important.

I want to see them become the persons I know they can be, but I may not be here and I’m frustrated because I can’t even help them. I don’t have my own home. I’m a guess where I live so I can’t have my children visiting me when I or they want. So there’s another thing I may never have my own place, a chance to live alone.

When I go through these feelings I feel like saying fuck it and try to be uncaring and detached like so many people in my life. But I can’t and I think about suicide but I would never do that because I want to find out what happens.

So I’m back to the beginning, I’m having a lupus day and want to sleep but can’t cause my mind is busy.

Day Two- Whose to blame?

My pressure was 129/79 this morning. Pretty good I guess. I exercised for 15 minutes this morning. That's pretty good!!! I juiced some carrots and honeydew. Very filling I'll eat some cereal in a little while. Yesterday, I did okay; I had cantaloupe juice, cereal, and tuna salad. But then I had potato chips, cake, Kentucky Fried chicken and I finished up my candy. It's a work in progress. I went to bed about 11 o'clock last night and was up at 5 am and out the bed at 6:30. It's 10:35 am and I am tired as hell.

I want to write how I'm feeling, to release some of the things no one is interested in. LOL so why am I writing this blog? So I can express my feelings, my fears, anger and the sadness that has haunted me my whole life through. I don't care if nobody reads it, but I hope someone will and I get a little attention. Because I am mad!!

Mad that I'm sick at 50 years old, mad that at most I may only live for ten more years. I pray I live longer. That I get to see my grandchildren become grown, to see the hope of my immediate family become a realization.

I want to blame someone. But who God? God gave me freedom of choice and mom taught me wrong from right. I made the choices in my life that brought me to this point. I was smoking cigarettes at 8, having sex at 11, drinking and smoking reefer at 12 and experimenting with all kinds of drugs by the time I was 14. I didn't go to school regularly and when I did I only did enough to pass. I stole money from my family, my jobs. I fucked the 3 kids I had all before I was 23 and all with different fathers. So who's to blame for my fate? Me? Yes there is no one else. Had I not gotten sick I would still be drinking and drugging and having irresponsible sex. But I would have been able to do things with my grandchildren.

I did bad things but I think I was still a good person over all. I wasn't mean and heartless, I cared about people, and I helped people. After a while I stop stealing, well maybe I had an incentive after my job cleared an investigation. I stopped stealing, I became honest. I would give back the extra change cashiers would mistakenly give me; I would pick up money drop and give it to person. But I guess it wasn't enough.

I know I should be positive. I know there is this thing called hope. But I don’t know how to think positive and I don’t know how to hope. I pray and I know God knows what’s in my heart. But I have no answers. There is no one I can talk to, I was seeing a therapist and all she was doing was listening to see what drug may work and when I stopped taking the drug she just listen to find out if I should take the drugs again. I know it’s a job for her, but I need is someone to hear me. I went to group therapy and that was okay but with 8 up to about 15 people in a group that lasts for an hour and a half, what kind of help can I get there. Oh I should tell you that the Cymbalta made me happy, I was so happy I didn’t know how to handle it so I stopped taking it.

So this is my new therapy, a new project to take up my time. To keep me busy. I hope I don’t stay alone on this journey, quest to battle lupus and all that it brings with it to wage war against my body, mind and soul.