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My family

Embrace Today By: K. Wilhelmina Floria

Tears of happiness shall fall,
listen close for your destination call.

A river of tranquility flows through life.

Ride out the eye of the storm, pass the strife.

Thursday, October 14, 2010

Me Verse Lupus: Wise Fools we are, Well I am

Me Verse Lupus: Wise Fools we are, Well I am: "After that hails storm we had on Monday night, I'm sad to announce that my pet spider, Charles has left home. I looked for him for two days..."

Wise Fools we are, Well I am

After that hails storm we had on Monday night, I'm sad to announce that my pet spider, Charles has left home.  I looked for him for two days and he's gone. 

Yesterday I felt like a real person for a change.  I woke up at 4 am and was out the house by 5 am.  I sat in the cold waiting for my connecting bus in Long Island for an hour.  I loved it, I very rarely get cold.  I had my echo, they didn't have the definity drug, so I may have to go back.  I see the cardio doctor next Tuesday.  It's getting closer to me having the heart cauterization. I stopped and got the odimoninter from the pulmonary doctors office.  The first night I slept with it, the machine didn't get a reading.  I slept with it last night, I woke up this morning and the red light wasn't on, so I don't know, I may have to do it again.

The seminar last night was the best of the SLE Lupus NYC Hospital Tours I've gone to.  No problem with location.  There was no excessive walking to the auditorium.  Socializing was nice, I sat with women who attend frequently, I guess you could call us Lupus groupies.  The auditorium was nice, it had a nice old fashion wooden stage, with a huge screen. The speakers stood at a podium, eye level to us on the floor. The tables had white table clothes on them.  The food was nicely spread.  The plates were round and black with a scalloped design, the forks were plastic that looked as if they were silver. Very nice, elegant. The meal was sandwiches, that were tasty, a toss salad, and potato salad.  That was delicious, I asked the personnel where they got it from and they said they made it in their hospital kitchen. I asked if they fed this to their patients and they said they did.  Let me tell you if they feed their patients like that, I'm sure they get well quickly with regrets. I wouldn't mind being there to be feed food that taste so good. They severed delicious bakery cookies.  There was a full house, it was almost standing room only.  I guess that's because it was in the city so bad, they had to name it twice, New York, New York. The hospital one of the top, Lenox Hill.

I told Kate Anastasia, the Director of Programs about the boo boo I made with FB and the ad for this blog and she said that I may be able to get financial help.  That would be great, believe me.  I feel that lost.  I got my SSD check yesterday and after paying my bills I barely have enough left for care fare back and forth to the doctors and the co-payments.  I have no cushion.

Dr. Nancy Beckerman was there again this week, she reviewed the survey she did last year.  The guest speaker Dr. Robin Dibner was inspiring, promoting hope and confidence.  The material was nothing new but presented in a fresh new way. Lupus attacks each of us differently and  in so many ways,  what Dr. Dibner did last night was make us feel less alone. Dr. Dibner is one of the top Rhuemotologist in NY and she  is the author of "Lupus Handbook for Women".  She is very impressive.

Last week one of the women that came had the same issues I had with Access-A-Ride, she was a complainer, and we were talking about her just before she came. (God forgive us and me for telling this story.) She showed up late, sat with us. By the time she got there the program was about to start, she had a Access-A-Ride pick up at 7:40pm the program was over at 8pm.  My pick up was at 8:01 pm.  Last week they ended early so I thought it would this week also.  I really wanted to stay but of course I couldn't miss my ride.  I left at 8:45 so I could stop in the bathroom, I got out side about 8 minutes to 8, there was a bus down the block.  I called AAR. and they told me my bus was out side. I walked down to it and was 5 minutes early like I'm suppose to be.  Don't you know this complaining woman was on the bus.  OMG! She had the audacity to chastised me, saying I'm suppose to be out there at 7:40pm.  The driver told her no I was on time.  All the way back to Queens she complained about her attendant, her legs, her cholesterol, her eyes. She said she was going to die young because her sister died young and because she has allergies to latex.  She wanted sympathy.  I complain in this blog, and if you don't want to hear it, as I tell my grankids when they are on the computer, X out. I try not to complain to people because I know they don't want to hear it and I know it's annoying.  Even when someone asks how are you? Do you want to hear, oh my head hurts, my hemorrhoids are swelling and I threw up all over the bathroom floor?  No. We just say I'm okay, or so so or give some evasive answer.  What does complaining to someone do? Make that person not want to be around you.  Hell as you all know I don't want to chase anyone away from me.  I'm starving for attention.

I mention this because no matter how gloom our lives my be, there is always someone who's life is worst.  There was a woman at the meeting who has Raynard's and she's missing a leg, and her fingers have been amputated at the tips.  She didn't complain, she smiled enjoyed her dinner and was pleasant. I'm thankful for the life I have, yes I wish things were different. That I was not sick, that I was financially secure, and my children were happy.  My life is what it is, I've had some good days, some bad ones and I know I will have more of both.  Sometimes, I wish I would just die, because of the self pity, depression and loneliness.  Then there are the days when I believe I will live well into my 80s' possibly 90s' and all is possible with my God.  I thank Him and try not to question him.  We can't change people, we can't make people see things the way we see them. I guess this is why we live in this world of different personalities and morals.  No one is perfect. We can try to achieve perfection, It is a wise person who learns from their mistakes. A fool who continues to makes the same mistakes over and over.  In reality we are all sometime wise when we see the mistake for what it is. And we are fools when we continue to make the same mistake over and over because we believe we can make it work for us eventually.  So I guess we are all "Wise Fools".

I meet my new Rhuematologist today, boy was this a busy week for me.  I pray he's just as nice as the last two doctors I met. Until tomorrow God Bless.

Tuesday, October 12, 2010

Me Verse Lupus: Nice to have a life for a few days

Me Verse Lupus: Nice to have a life for a few days: "Woke up with one hell of a head ache. Oh it hurts. Pressure is 144/89. Do you think not having one of my Pressure pills is causing this? M..."

Nice to have a life for a few days

Woke up with one hell of a head ache.  Oh it hurts. Pressure is 144/89. Do you think not having one of my Pressure pills is causing this?  My mate paid for them last night. I'll be back on regiment today.  I have an hour before I can eat.  I have almond milk and Kashi Go Lean so that's breakfast, if I'm not tempted by something fattening and delicious. Friday I plan to get some blueberries, strawberries a pineapple and cottage cheese.  I'm going to try and snack on that at night when the cravings come.  I like that stuff, I just like chocolate, cake and candy better.

I go for my echo tomorrow. Then I can schedule my cauterization.  I was reassured by several folks on my online support group, that it's not that bad and that I'll feel better.  I really want to know what it feels like to feel good again. I was told I would feel better after I had my hysterectomy, three years later and I'm still waiting.

Tomorrow evening I'm going to the S.L.E  Lupus Fountation 2nd seminar for this year, I called and got the address closest to the auditorium. I hope I don't have to walk any distance.  My mate asked why I go to these things.  I go to learn about the different subjects, to learn what's new, to socialize with people who know what I'm going through.  To fucking get out the house.  She goes to her rehearsals three times a week and the nights she doesn't have rehearsals she goes to the bar.  Where am I? Socializing on FB, Twitter or writing this blog.  Once and a while someone talks back to me. Once in a while I might get a phone call.  My sister is having some difficulties right now so I don't get to talk to her too much right now.  My friends what few that still talk to me are busy with their lives.  I don't have anything to talk about anyway. My children stress me.  They have their problems and issues of their own and I can't help them cause I can't even help myself.  So I go to these seminars to feel alive for a few couple of hours.

I really enjoyed my grandchildren yesterday.  I asked them why they were home from school and they didn't know, so I told them.  I hope they don't get in trouble in school. I just told them that Columbus discovered a new world and new people.  Then took over the country and put the inhabitants on reservations.  I didn't lie, right?  We ended up talking about slavery, which opened the door for me to tell them that slaves weren't allowed to learn to read and write and how lucky they were to go to school and learn.  I told them they should work real hard in school.  I made cards out of loose leaf paper and put words on it and we played the memory game.  They could see through the paper, and were cheating. I stopped the game so we could color the back. I was surprised that they knew all the words I used.  Then we read about Shaka Zulu.  They found it interesting.  They ate, watched TV and were pretty good until their grandfather came in.  Of course he bitched about the house being a mess. Sorry.

So I'll be busy tomorrow. On Thursday afternoon I meet my new Rhuemotologist. I'll get back to my life story in a few days.

Sunday, October 10, 2010

Me Verse Lupus: Just a F#%* up

Me Verse Lupus: Just a F#%* up: "Feeling down this morning, so what else is new? I took 1.5 mg of Lorazapam. I'm kind of depending on them. I don't have anything to snack ..."

Just a F#%* up

Feeling down this morning, so what else is new? I took 1.5 mg of Lorazapam.  I'm kind of depending on them.  I don't have anything to snack on at night so I've been taking the drug to help me sleep so I don't think about eating.  I just need to get pass the next 3 days and I will have money to do the things I need to do.  I owe my mate $44.50 and I sure want to pay her back as soon a possible.  My daughter is going to lend me $45 dollars to hold me until Wednesday.  I put my prescriptions in the pharmacy but I need $10 to get them out,  one is  blood pressure pills, I didn't take it yesterday and won't have it until Tuesday, that's 4 days.  I don't have enough potassium to last until Thursday when I see the Rheumy, so I'm taking it once a day until then.  I won't have my breathing medication Tuesday morning, but that should be okay because the prescription filled at the pharmacy. That damn mistake with FB is hurting me.  Access-A-Ride not sending my reimbursement check.  Damn if there's a way to fuck up my life, I find it.

This is what my life has always been.  I've had large sums of money many times over my life.  I worked for a city funded program under the Kochs' administration.  I got 5% raises that were retroactive for a year or more.  I took my money out of my 401k, I liquidated my life insurance policy. I stole whole paychecks on my off pay week.  I worked two full time jobs at different times.  My mother left me a large sum of money when she died.  I didn't get a lot but I got a few dollars when I sold the family house.  Where the fuck is all that money.  Burned up in bull shit.  I had plenty of time to make my millions.  I was an ass hole. 

I dreamed of writing a best seller and watching it climb up the NY Times list and then made into a motion picture and I saw myself going up to accept my my little gold man from the academy awards.  My novel is good what I have finished of it. I need an editor, I need an agent and I need someone who will think it's worth trying to sell.

Most of all I need discipline, I don't have any, not to save money, not to control my weight.  And I don't have the discipline to put the effort in to complete my novel when it's more then half way done.  There's aways something.  Working on my greeting cards, writing this blog. I spent so much time farming on FB that I could of been finished with all the time I put playing games.  When I first got sick I couldn't concentrate, it hasn't changed much but one thing writing this blog has proven to me is that I can still write, that I still have a little talent left, I just need to do it.

When me and father (Mr.23) were in the project.  I use to write all the time, poems, short stories. He use to write also when he was there.  I brought a word processor, I loved my machine.  I'd come home clean, feed the kids, put them to bed and stay up at night writing.  The kids weren't suppose to touch it.  But my oldest daughter did and got a ink spot on it.  She tried to clean it.  She put Ajax on the machine, then water to wipe it off. There was no ink spot but it didn't work either.  Water damage. Fortunately I was able to get it repaired under warranty.  I had tunnel vision, all I could see was my writing was going to make me successful.  All the writing books warned against writing for profit.  They suggest that you write for yourself.  Turns out I finished the novel when I moved back  into my mothers' house, that's another story.  Lost it when I sold the house and my good friend from high school found it and sent me a copy.  Maybe I'll work on it again. After I typed 'the end' on that novel I had enough of it.  I gave a lot of time to it and didn't want to touch it any more.

The novel I've currently been working on is good.  I like my characters and I think I have a lot of twist and turns in it and I don't think it's predictable.  I just need that drive I had when I worked on my first novel.  I can blame it on my mate. I can blame it on the lupus and medication.  But the bottom line is I don't have any discipline. I don't have the drive I use to though I'm just as hungry.

It's going to be a long week, I will write more as I have time. I guess this is my writing for myself, so it doesn't matter. This is one of the reason I write, it's where I have someone to listen to me.  Paper and pen has always been my best friend.  If only they could put their arms around me an hug me when I need it so desperately sometimes.