My family
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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..
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.
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.............
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.
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.
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