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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.

Friday, October 29, 2010

Me Verse Lupus: Blame it on the lu lu lupus!

Me Verse Lupus: Blame it on the lu lu lupus!: "I'm not working on my weight. My mate has her family here visiting from Florida, so she planned a big dinner on Saturday. There is too much..."

Blame it on the lu lu lupus!

I'm not working on my weight.  My mate has her family here visiting from Florida, so she planned a big dinner on Saturday. There is too much food tempting me.  I don't have that kind of will power, yet.  So I'll resume on Monday.

Yesterday I had a not so good day.  I was a bit tired but pushed myself. After I wrote my blog I went to get breakfast, which was left over meat sauce and ziti with mozzarella cheese. I sat talking when that numbness in my mouth started and I became light headed and dizzy.  I drank water and tried to stay still.  My stomach was kind of queasy too. Around 3:30 pm Access-A-Ride picked me up for the seminar.

I arrived an hour early because I told  AAR I needed to be there at 5 pm in case they were late. The program didn't start until 6 pm. The dinner of sandwiches and salads was served.  After I ate, it was then that I started to feel better.  I spoke to the social workers to discuss a support group in Queens and volunteered to help with it. Brooklyn has a great Lupus group according to the women I became friendly with during these tours.  They have all kinds of programs going on to keep the Luppies busy.  That would be good for me to get out a couple of days a week, it'll give me a life.

Last night was the last stop on the SLE Lupus Foundation Hospital Tour.  They have been video taping since the beginning.  Last night they interviewed me.  I played modest, but confessed I would love to do it.  I don't know if they'll use my footage or not. If they do I will let you all know.

Of all the stops they made this was the one of most interest to me.  It was about the heart, the doctor they choose to do the seminar was no doubt an expert.  However, he would have done better had he been talking to his peers.  He gave us statistics and spoke in jargon that was unfamiliar to us laymen. I wanted to know what heart problems were common in lupus patients, why,  and how best to treating us.  He did tell us the common heart problems, the whys and the foods to avoid, stop smoking and exercise. The basics. He went over the allotted time and left no time for Q & A. I had to run out for AAR. I need to suggest to the foundation that they should include in the program what questions we should ask our doctors.  I think that would be very good information to know.

My friend and I walked the long corridor to the AAR bus stop, she lives in Brooklyn and we and two other women from the seminar ended up on the same bus.  WoooHoooo! I was dropped off first.  It was funny we were talking and I stopped and had us to introduce ourselves.  The driver laughed and said he thought we knew each other.

I have a gentleman that I've been communicating with on FB for a few days.  He says he's following my blog and that we know each other.  I feel so bad that I don't remember him.  He's on the up and up though, he knows things. He dropped names of my family, he knew about my aunt's house, in fact he called my aunt, aunt ___. He suggested I asked my cousins about him.  I did and I remember his father. Which reminded me of a story of my youth.  We use to go crabbing in the summer with my aunt and uncle.  We loved it, well I did.  I didn't even get deterred when I was pulling a crab basket up and the ground under my feet broke off and I fell in the creek with the damn muskrats in spitting distance. (I told yawl how I felt about hamsters, rats are worse.) Anyway I had to take my clothes off and sit in the station wagon under blankets while they continued to crab. Getting crabs was more important then my naked ass waiting in the car.

On this particular day a snapping turtle got caught in the crab basket.  We didn't have but a few crabs, but we had to cut our trip short because of this turtle.  I just told you how I sat naked for several hours while they continued to crab. But when they caught this turtle, my aunt and uncle got so excited that we had to hurry home. My new/old friend on FB, father was called to come over and cook that damn turtle.  I thought it was disgusting to eat a turtle. One by one my aunts friends started coming over to partake of the soup. They had a turtle soup party.  Me I was annoyed that we didn't catch  too many crabs.  I didn't eat the soup but my FB friend said he still has night mares of eating that nasty soup his father made him eat.

See I've had some happy times in my life. I'll share more of the drama soon.

Thursday, October 28, 2010

Me Verse Lupus: There's always someone worse.

Me Verse Lupus: There's always someone worse.: "Got home about 10 pm on Tuesday night after the seminar. It was good, and I didn't want to attend that one, because it was about lupus and ..."

There's always someone worse.

Got home about 10 pm on Tuesday night after the seminar.  It was good, and I didn't want to attend that one, because it was about lupus and dental.  I figured since I only have 11 of my own teeth and a bridge in my mouth it didn't make sense to learn about the dental portion.  One of the women who attends regularly asked me to come, so I went .  Well I tell you it help me understand my illness more and to recognize signs of oral problems.  If I'm ever able to get dentures, (hum, good thing to get with tax return in 2011), anyway they explained that my gums could drop and the dentures won't fit right. Or they won't stay in place as you eat, making eating difficult.  That won't be a bad thing. Ha! 

They talked about another autoimmune disease Sjorgen which affects the mouth and eyes.  I tell you this Lupus is no damn joke.  I'm really sick you know.  I tell how I'm achy, my hands and legs swell and I'm always tired, and the headaches. And my chief complaint is my over weight body.  But I've been dealing with these things my whole life, they were a who I am and just a fact of my life.  I know if I do certain things I will be tired, I know there are things I can't do.  This makes me depressed.  When I have things to do I have to prepare in advance. Like going to the seminar tonight, it's 9:30 am and they are picking me up at 3:30 pm, I get anxious about being ready on time.  But I never think of my self being really sick, does make sense.  You know they say you don't look sick.  I keep saying if I lose the weight I'll feel better I believe this.  Yea I know I use oxygen and have a hard time breathing but I don't think of my self as being really sick.  I mean I can still think and do for myself, even when I'm too tired. But the truth of the matter is I'm sick and my life is different.

On Tuesday I meet a young girl I think she was 24 she has had lupus for 11 years.  She started with 100mg of steroids because she had kidney involvement.  She was reduced on the steroids and it cause another problem. Several of the other women I meet have diabetes.  Lupus affects us all in different ways and we all feel different.  We all go to these seminars looking for answers, hoping for some miracle to make our lives normal and help us have a better quality of life.  What I learn is that no matter how bad I think my life is, there are others who are dealing with more difficult issues.

My mate may be cold sometimes, but she is supportive.  Frustration may cause her to call me lazy and get annoyed. But she supports me and is the first one to see that I'm in crisis when I get sick.  There are so many others who's mates, husband who walked away or don't give them any support and don't want to understand.

God is good to me. My mother was right God doesn't give you  any more then you can handle and God made me strong.  I pray for all those with chronic illness that they find peace.  I found peace, I only pray that I keep the peace in my heart and mind. Everyday is different, I ride an emotional roller coaster and some days I'm up and get butterflies in my belly, others I spiraling down and screaming in fear.  But one thing that is a given if the good Lord thinks it's time for me to leave this world, I will go with out fear.

Tuesday, October 26, 2010

Me Verse Lupus: Life changes, we grow.

Me Verse Lupus: Life changes, we grow.: "Today started good. I juiced a cantaloupe, I'm drinking it as I write this. I didn't get on the bike, first my ipod wasn't charged up. It..."

Life changes, we grow.

Today started good.  I juiced a cantaloupe, I'm drinking it as I write this.  I didn't get on the bike, first my ipod wasn't charged up.  It has a pedometer, I want to keep a record and listen to music as I pedaled. No problem change of plan, I'll find something to watch on the computer.  But wait I had some business I needed to take care of first.  I made one call that lead to another and before you know it an hour and a half has passed. So I'll start the bike tomorrow, which is better, I don't have anywhere to go tomorrow.  If I rode the bike today I would be too tired to Brooklyn hospital tonight to the SLE Lupus Hospital Tour. They are known for giving the address to the furthest entrance to the seminar.  I may get my exercise tonight anyway. I will, however, have my Kashi Go Lean with Almond Breeze when I finish writing.

This is what took up my bike riding time. I got the bill for my medical records. I paid for them on line and the payment system they have is whack.  It doesn't show the payment right away. I thought I did something wrong and made to payments. I called them to get it fixed and they don't pick up.  I left a message and they did call me back about 30 minutes later. Thank goodness because I would of stressed over that.  Happy that I'll get my medical records. One of my doctors gave me a prescription with the wrong dosage, called left a message for him. Next which took the most time. My bank was offering $25 if you use their bill paying service. I tried it before and didn't like how long it took to pay the bill. But for the money I'll try it again. The phone bill went through right away.  The other bill was my GHI, now you know I don't want to mess with that.  They said they mailed a check, GHI didn't get it. So I'm calling back and forth between them. Long story short, I stopped the payment on the bank check and will now pay GHI on-line. I will try being that their system has a glitch!  No worries GHI tells me I have until the 12th of the month.  My stinking thinking is thinking of robbing peter.

Still waiting for money in the mail, Access-A-Ride owes me two checks. And I asked for assistance from The SLE Lupus Foundation for that boo boo I made on FB.  I know I can't depend on that but it would be nice to have that cushion.

For years I've been the one that people came to for financial help. I've lent money, gave gave money, provide food and shelter to many people.  I even co-signed a loan, that the person defaulted on and I ended up paying $1100 to clean my credit, which is still shitty. But I'm saying this because now that I'm unable to work and don't have any income except my SSD, none of the folks I help even try to offer a lending hand.  Well one friend who was on the pipe back in the day has given me a few dollars back, and says they'll help me out. But the other then that.... If I was to do my life over, that's the think I would change my good nature of helping people, no that's not true.  I'm a rug walk all over me, when I get old put me on the curb for the trash collector to discard and never think about me again. But I think I would of had a cut off instead of being saint stupid. I opened my door and allowed myself and children to go without so other people could eat and have a roof over their head. I struggled to pay bills while people living with me not paying rent, helping with the bills would buy stuff for themselves and not say here to me. Eventually they moved on, some are on their feet and still they don't give a person who carried them when they couldn't carry their own weight.

Enough of the above for now and back to the years in the projects.  Father has  job when were in the project working for the airport.  He was smoking crack but he maintained the job, for a while and for a while I think he lied about working because he started complaining about them not paying them. 

The apartment was cozy. We had big house plants in the living room.  A fish tank, that I took care of.  I had oscars and a shark fish. One morning my son left the net on the top of the tank and it fell in.  The shark got caught and the other fish were eating off of him.  I knew he wasn't going to survive, but he did and he grew with the oscars, eating live goldfish.  My shark was beautiful and he held his own with the oscars.

We had a bird cage with finches.  We found these two valor chairs, burgundy. The high rise bed father and I slept on and our TV.  Completed our living room. Everyone who visited felt welcome and comfortable.  We use to let the finches fly around the living room and often shock our guest when they flew from one of the plants.  Our cat never bothered them. I brought a nest and put it in the cage and the finches laid an egg, it hatched and the baby grew. We were amazed.

One year father brought my oldest daughter a parrot for her birthday and the parrot killed the finches. Then it committed suicide. Which is the story we tell,  he died without any trauma as far as we know.  We say he was lonely after he murdered the finches. My son had a hamster, I hated those things but as long as the kids and father took care of them okay.  This hamster use to get loose and run around the apartment and I would be hostage on the couch until it was caught. One night I came home from work, father told me to look in a pringles' box and there was the hamster, dead.  My youngest daughter gave him a bath and blow dried him.  He didn't survive his pampering, so my daughter buried him under the shaving in his cage and stuck a flower in him to mark his grave.

Despite fathers' addiction we did have some memorable experiences. Our New Year Eves were always nice like I mentioned before his brother always brought the new years in with us. We would have a beef ribs or steak, chicken, rice and peas, potato salad and cabbage.  We would have our drinks and smoke  reefer. I would let the kids toast the New Year in with a glass of wine.

Finally I told father I wanted him to leave, and he went to rehab.  When he came home he worked hard to stay clean.  I gave him another chance with my money and he did good.  I got our bills caught up and was learning how to mange my finances.  He use to go see his mother in Jamaica, NY not the West Indies. He would stop and see my mother.  My mother didn't care for him, she use to see him on the streets and thought the worst of him.  Funny I was the only one who didn't know who he was. But my mother was softening up to him.  When we first got together he wouldn't go to any of our family functions.  He use to say he's with me not my family.  But I use to go to all his family functions.  His aunts and cousins were all party people.  The liquor never stopped pouring.  The cousins always  had a little reefer or cocaine to pass around.  Cigarette smoke billowed in the air.  Father always said him and his brother were the black sheep's in the family.  Sorta of how I felt about myself and children.  My children still believe this.  When everyone got good and high the stories they told.  It was funny, his aunts were special ladies, so is his mother.  His grandfather was a good man too.  I think he was 92 when we met and when my daughter was born she took to him right away.  She would go with father over to his mother house, they say she wouldn't leave Pops' side.  They gave her the name Micky Mouse.  She use to carry this Micky Mouse doll all the time, this one day her grandmother chastised her and she said, "Grandma, Micky Mouse said Fuck You."

As I tell my stories they aren't in order but as I remember them.

 My mother moved my grandmother into the house and got rid of Grans' apartment.  Mom sold her piano.  She got real involved with her church.  I had started talking to my mother everyday.  We weren't that close when I was growing up, but we were getting there.  I was learning that I could talk to her about anything.  I just wish I had paid more attention to her health, but she was so secretive.  The night before she died was fathers' birthday.  She told me she was having pains in her chest, but she had gone to the doctor that morning and the doc told her she had gallstone and that's what she thought it was.  I know I should have gone there that night, but I took her at her word.  It was fathers' birthday, the car only went 35 mph and it was after 7 pm.  I promised myself I would stop by in the morning on my way to work. I was running late and didn't have time to stop that morning. I got to work, rush to take care of what I need to do that morning when I got a call, it was my mothers' neighbor telling me I need to to get to the house.  When I got there, the EMS were in her room, the police wouldn't let me go upstairs.  One of the techs came down he asked about moms' medical history.  I told him about our conversation we had the night before.  He said,  "oh she did have heart problems."  That went right over my head, "she did." the next thing he said was your mother died. I screamed and put a hole in the kitchen wall. My mother was dead, that couldn't be possible.  Would it had made a difference had I gone to her house the night before.  If I stopped by that morning.  I was 33 years old life was starting to look up and now it all came crashing down.

My brother came and he went right upstairs I followed him and there was mommy. She looked so peaceful. 

I called my brother-in-law and he told my sister.  My sister-in-law brought my girls and her two youngest sons to the house.   This kids were so happy my sister-in-law said when they were on their way over.  They were coming to grandma's, where there was always treats, they got to play all over the house with their cousins. Just before she let them come in the house she told them that their grandmother had died.  They came in the house and all four of them stopped on the porch and cried.  It hurt even more seeing her beloved grandchildren crying over  her passing.  Her grand kids were her life, she loved them so much. Each were spoiled evenly, there were no favorites.

I was going back and forth to Rockaway, even though I was staying at the house. My sister and her family was there. My aunt called, she was like my mothers' sister.  She asked me if I was going to move into the house.  I hadn't thought about that, I couldn't tell my aunt no.  This was our family home. My brother and his wife just brought a home, my sister had my aunts house.  My mother wasn't even buried yet, if I didn't move into the house what will happen to it? What would happen to Gran? Yes I'll move into the house.  I didn't even speak to father about it. We were going to be home owners.

My brohter and I made arrangements for the funeral, they need a down payment in cash. My brother was able to get a check from one of his insurances or something but he couldn't cash it.  I took him to my bank and walked right up to the presidents desk and got the check cashed.  My brother weeped and said, "mommy would be so proud of her daughter."  That made me feel good, but still didn't erase the, "you're a fuck up." 

My sister didn't want to help with the arrangements, anytime we asked her opinion she just walked away and would say she had to do this or finish that. She did help pick out mommys' clothes.  I'm proud of us, we did a good job.  In the funeral home we all were at the casket, each of her children and our mates, all of her grandchildren. We did a group hug, it was as if we knew things would never be the same.  That this was the last time we would all be together under one roof. I really miss our closeness.

I'll continue with live in South side Jamaica.

Monday, October 25, 2010

Me Verse Lupus: Working will power.

Me Verse Lupus: Working will power.: "It's been 4 days since I last posted. What happen? I feel like Rip Van Winkle. I'm exhausted right now but I had to get my write on! Let..."

Working will power.

It's been 4 days since I last posted.  What happen? I feel like Rip Van Winkle.  I'm exhausted right now  but I had to get my write on!  Lets see what have I been doing, uh, nothing that spectacular, what a surprise.  Friday I was just lazing around.  Saturday same thing only I wrote 2 pages of a short story, now I really enjoyed doing that.  I figured if I can't live a real life of my own, I may as well live vicariously though my imagination. If my writing pans out, I'll start another blog of short stories.  Anybody who is reading this one, will you be interested? Please let me know. I like seeing comments but more so, I want to know so I don't wast my time.

Sunday I cooked, I made a meatloaf just like my grandmother use to make with hard boiled eggs in the middle.  I skinned, boiled, seasoned, mashed then whipped potatoes with eggs, milk and butter. Then topped it with cheddar cheese and baked it.  Good, but another pound of fat on the mid section.  My grandmother use to make potatoes like that for Thanksgiving only she made it with sugar, cinnamon, nutmeg and vanilla, delicious.  My mate doesn't care for sweets and since the meatloaf had  brown sugar mixed in my glaze I opted to use garlic and salt instead.  We had string beans to go with the dinner.

I feel okay. Tire like I said. Still having my headaches in the morning, been achy, the hands of course, I really don't notice when they are swollen anymore.  Feet hurt and my back has been hurting too. Aches and pains are normal in my world.

I went to have my MRI and MRA of my brain today.  Access-A_Ride had been a good to me lately, since that day they left me waiting in the rain for an hour and half. They were suppose to pick me up at 7 am. They were out there at 6:30 am.  The place wasn't open when I got there so the driver dropped me off at Starbucks'.  I had a asagio cheese bagel and a blueberry muffin and a caramel latte. I sat with my nook for 45 minutes and then walked to the imaging place.  My appointment was at 9 am and they wanted me there 15 minutes earlier. When I arrived the place was packed.  I should of just waited instead of gorging on that yummy food. They didn't call me until exactly 9 am.  They had me in that machine by 9:30am.   That machine is different then the one at the city hospital.  I now know where Stephen Kings gets his inspiration. I didn't like that test.  I hope they don't find anything wrong, but figure out why I get dizzy, numb in the mouth and have these annoying headaches. I don't want to do that test again.  They finished with me at 10:45am.  I went outside, access-a-ride was due at 10:48am and they were on time. Man was that cutting it close.  Hope they are on time like that tomorrow night when I need to get home from Dekalb Ave. in Brooklyn, another SLE Lupus Foundation Hospital Tour.

One thing about being in that machine is that I want to get rid of this other person attached to me.  I was squeeze so tight in that machine I thought I was going to get stuck.  While thinking about that, my mind wondered to when I fell down the steps 2 years ago and broke my fiba bone.  The EMS workers couldn't get me off the steps, they had to call a second ambulance to help them lift me.  I wasn't 300 pounds yet.  What if something happens and I need EMS to get me out now?

 I walked down the block from Starbucks, and last week I walked 8 meters.  I decided I will get up in the morning, do some stretches, strap on my oxygen and take a walk around the block and as I get stronger I'll do more. I lost a lot of weight when I worked in Manhattan and use to walk from 31st Street to 59th Street. I'll eat cereal, drink my cantaloupe juice, and eat lots of fruits. I can do this. Right? I mean really, I stopped smoking after 40 years, I don't give into my urge for a some cocaine and I very rarely drink.  So food, I can give up the good shit I love to eat and start concentrating on eating healthy. I won't be tempted by my mate when she cooks bacon, sausage, home fries, eggs or lamb chops in the morning.  I'll have my cereal.  When she comes in from the bar, I'll refrain from eating a second dinner, which is usually a Whopper, Big Mac, pizza or a Popeye chicken and rice wrap.  It just takes will power.  I hate the way I look in the mirror so I don't look. However I had to look last night,  when I Naired the hair off my face so I wouldn't look like a pale ape.  I hate to hold my clothes up, because I fit them.  Most of all I hate the way people look at me. I mean they smile, no one has said anything nasty to me, but I see the disgust in their faces.

Funny I started this blog to journey my weight loss, but decide  to just write and not worry about my weight. I'm going to work on it, really. When I lose this other person who attached themselves to me, watch out all you divas out there.

More to come after I rest.