Sigh...

I am starting to get the headaches and dizziness again. I am beginning also to drag my left foot again and sort of trip with my right foot. No falling yet but I have the cane out just in case.

It has only been 7 weeks since my last spinal tap. I hate the thought that my body just won't resolve the Pseudotumor Cerebri like it did in 1997. I am okay with getting another tap before I go away at the end of May, but just the idea that the length of time between each one is getting shorter and shorter makes me a bit sad.

But, on the other hand, I get the tap about a week before the cruise and I will be fine for the whole trip. I can do as much as I want and not worry about anything.

So, deep Sigh, but also, a good outcome.

Enjoy your days.

S.

Negative Nellies begone from our lives!

Sorry,
Just have to rant abit.
I cannot understand at all the need to curse someone when you can keep your damn mouths shut.

I get really disgusted and PO'd(keeping it clean here, thank you very much) when someone responds with a personal attacks, when someone, who clearly needs a positive word, is crying their eyes out, complaining about how miserable the world is, and in general thinks that a choice made was the wrong one.

So, she smokes, so she thinks her way of dieting is the best way. Big F'ing deal. She asks for a response to help her feel good about a decision and while most respond with kindness, a few knock her to her A$$. (Well, trying to keep it clean now).

Hurrah for the few who stood up and said to the negative nellies "Give us a break." I wanted to be one of them. The most I could do was PM the author and let her know I would be there should she want to vent and get a better handle on things.

Ya can't change the world, but you can change your world.

Ah, I feel better now.

**************

Oh, yeah, I am going on a Carribean cruise over the week of Memorial Day, got an amazing rate with two friends for a Balcony suite on Carnival ship Miracle.
9 days/8 nights. Leave NY, two at sea, San Juan, Tortola, Virgin Island, two more at sea.
First cruise. Can't wait. I want a deck chair and a fruity drink with an umbrella in it and a good murder mystery to read....

This one is for Sharon (Theoslady on CK)

"It is astonishing how short a time it takes for very wonderful things to happen." - Frances Burnett

"Exert your talents, and distinguish yourself, and don't think of retiring from the world, until the world will be sorry that you retire." - Samuel Johnson

"If we have no peace, it is because we have forgotten we belong to each other." - Mother Teresa

Almost every day Sharon posts the most wonderful quotes. I hold many of them dear to me.

Sharon, I think you are an amazing lady. What you do, who you are, is give of yourself to others in their most dire of need and or circumstances.

If I could give you anything in this world I would give you one peaceful, totally easy going day.

Since I can't do that, I can just thank you for all you do.

Where is the frutstration icon when I need it?

I HATE GOVERNMENT AGENCIES!

I go out this morning with my friend Andrea to help her out and I come home to find out someone from Social Services had come to my Mom's apt to question if I actually live with her. No notice at all.

I am glad Georgiana was here to help my mom out. "Tiny" as everyone calls Georgiana is the aid who helped my dad out his last year of life and helps me and my mom now.

So, she gave the man what for and will be with me when he comes again. I have to call the guy after 2pm and set up an appt. I don't mind the appt. I just minded the no advance warning. Like the damn Social Services department expects me to lie like that.

Scuse me Momma Bess...

BUT FUCK THEM.

It stressed me out so much I had to go and take a valium, something I have not had to do in almost a month.

I really hate goverment crap....

But, the day is sunny and breezy and I have PT in the pool today.

It could be lots worse.

Love ya all,

Have a joyous day.

Getting my ducks in a row.

Morphine sucks. I mean it really helps my back but it makes me nuts.

Anyhow,
I just sent Mitchell an email, which I should have done a week ago, again thanking him for a great time. I also reminded him that since the weather is getting nicer, he should come down in the evenings and we could go walking on the boardwalk or the beach.

Oh, yeah, other things!!

I am one step closer to getting full "temporary assistance" through NYS Social Services. I got a paper in the mail a few days ago stating that:

"Sandra has been determined to be exempt from participating in Temporary Assistance work activities effective April 20,2007 because according to medical evidence she is currently unable to work due to a medical issue."

Part one down. I sent a copy to my disability lawyer to see if it will help getting the SSDI any faster.

Then two days later I get a letter from Social Services to have my "Board Certified" Neurologist fill out another medical form. This one was 4 pages long. Same damn thing as the last one but more details. This one will cost me $35 for my neurologist to do. I will be billing Social Services for this one!

So, I took over the forms today and also called my neuro opthalmologist because his office still has not sent paper work over to my neuro.

I am truly getting tired of doctors, lawyers, government agencies, etc. Why am I still having to prove myself?

Every day though, no matter how frustrated I get, I am happy in my heart because I have people in my life that make sure I am taken care of. So many people do not have the support system that I have. Over the past year I have developed the habit of trying to help someone or other who asks me for my knowledge. I am glad to give back in someway.

Trying to catch up

Sorry, long week.

1. Lets just say that having to take morphine for my back pain does not make blogging easier, it just makes me sillier.
2. Okay, Momma Bess: there aren't too many detail regarding Mitchell and the comedy club date. I still have a good feeling in my heart. It was so nice to be surprised by someone. I always decide on things or just go for the easiest thing. I was able to do something completely different this time and it was Mitchell who thought enough about me to set it all up.

More later...

Finding Joy in every moment

Joy,
it is a very short word. Three little letters.
Strive for it every day. Joy makes life worthwhile.
Joy is infectious and should be spread around.

Joy. I love the word.

Pignot Grigio and comedy

I had myself a wonderful time with Mitchell.
He took me to a comedy club called "Govenors" in Levittown.
Don't ask me the comedians name, I don't remember it but he was funny! He does his own stand up and then uses ventriloquism dummies for the rest. "Walter" is one of his characters and if you watch Comedy Central you probably have seen the act.

It was fun, funny, relaxing and I have definitely discovered the wine Pignot Grigio. Nice wine and I have a really good buzz going.

The nicest part though was being able to tell Mitchell just how perfect the night turned out.
It was raining really really bad but we went anyway.
It was also the first time when I have said "I love that you thought of me and I love you." that the man actually said back something. "I appreciate that." Not much of a response but it meant quite a bit to me.

I will write more when I get a good night sleep.

vacation?

Off to Virginia.
Everyone please,Enjoy your particular holiday
Be safe, be happy, and above all else
Let the concept of Joy into your hearts.
Back in a few days.
Love Sandra
(aka: girl child, aka: little sis, aka the mother of Jazzy, aka: Big Sis)

Sigh

I will be, even though I am not so sure I want to, going down to my bro in Virginia for the week of Passover. Jazzy is being taken care of by a friend. I want to visit with my nieces, especially Ava, who is now almost 9 months old; go into DC for the Cherry Blossom Festival; and one or two museums, but I really don't care if I am around either of my brothers. Lately I just have been feeling like I do not exist to them.

I am going because I don't want my mom home April 4th, her wedding anniversary. I wish I could just put her on Amtrak and then come back here to Long Beach and crawl under the covers and ignore the entire week. Everyone is telling me I need to grieve more. Being with my family is going to be one big cry fest and I just don't want to be in the middle of it. I want to sit on the porch and listen to the ocean. I want to go downstairs to the apt's gym and just work out. I want to watch tons of videos and go to see a movie or two. I want to not make any decisions. I want a week to grieve in my own way, in my own time.

I just miss my dad...

********

I am tired. It has been one long friggin week. Wednesday I spent all day at Social Services in Uniondale sitting on my butt waiting to be called to have my application for Temporary Assistance and Food stamps. 9AM to 4pm.
Friday I had to go to Mineola, NUMC(Nassau University Medical Center or as I like to call it "Government bull shit Medical Center" to be deemed or not deemed unfit to work so I can get the Temporary Assistance and continue with the food stamps. Four hours there.

Today I had my triannual (?) defensive driving class and was sitting for another three hours.

I am tired, I am in pain, and my butt is so flat from all the damn sitting.

At least I have been using the gym downstairs. I use the bike and the work out ball for balance and crunches. I also, yesterday went for my first PT in the pool. I felt like a kid in a candy factory I was so happy to be back in the water again.
I did discover though that it will definitely be a while until I can swim laps again. My kicking back wards with my left leg is really difficult which means I would have a problem doing the crawl. Ah, well, all in good time.

So, to all, if I am going to Viriginia I wish a happy passover or/and a great easter.
Be back as soon as I can.

Government agencies. Are they the devils work?

Government agencys suck. I know they are a necessary evil.
I spent 8 hours just to get a case opened so that I could get food stamps and emergency medicaid.
8 hours and now I have to go to one of the government doctors on Fridayat 9pm and then back to Social Services on April 10 for a final evaluation at 2pm.

Alright, at least I do have foodstamps now that will help me out with higher quality foods during each month.

I am exhausted.

Perfect weather, a most wonderous day.

This is what a perfect day is. A walk on the boardwalk.

A cuddle with Jazzy McShortie,

and a stroll through the city of Long Beach.
Sure beats the blues to a major pulp.

If you look really hard you can see NYC in the background.

This is my hair cut. The blur is Jazzy.

My wonderful Jazzman!

Life's outlook.

Some people are always grumbling because roses have thorns. I am thankful that thorns have roses. -- Allophones Karr

This quoted statement was posted on Sharons CK journal/blog. I think it is perfect. I needed it and am grateful to her for bringing it to me.

Extra! Extra! Get the update and continued story here!!!

So, when last we left our heroine, the train had hit the brick wall and pieces went flying all over the place.

I just was speechless. I managed to ask her when I was going to have my lumbar puncture. Her answer, "Oh, we decided to send you home and then you can come back in a few weeks as an out patient."
I said "That is completely unacceptable and just plain stupid. I have been sitting in this hospital for almost two weeks and you guys aren't going to do for me the one thing I KNOW will help me out?" I am so happy I did not have a stone to throw at her back as she left.

About 10 seconds later my friend Cathy called and I just lost it. COMPLETELY. I started crying and crying and all I wanted was someone to give me a very sharp razor blade or a bottle of narcotics. All the pain from all these 22 years of dealing with health issue came flooding into my head and heart and soul and I could not stop them.
Cathy said she was coming over.

A minute later my mom came in and I cried all over her and felt like nothing. I felt like a liar, a hypocondriac, a whiny baby, you name it I felt it and I was lower than ant poop.

I was so damn distraught my mom asked the head nurse to have the Psychiatrist who works in the hospital come and talk to me.

I let that idiot Physician Assistant get to me. I allowed one stupid person to negate every positive thing I had done over the years to live as well as I can with what I have.

Sooooooooo,
that was Monday afternoon. Monday later in the afternoon, my mom talked to my nurse and found out that the PA had scheduled the lumbar puncture for Tuesday morning. Course the PA never came back in to let me know this.

Tuesday, I got 20 miligrams of valium and the lumbar puncture. Valium helped me not look for sharp objects and the Radiologist was amazing with the puncture. I was just laying on my tummy under the floroscope chatting with the assistant and all of a sudden the doctors says "Okay, I'm in. Lets drain you." Just like that. No pain at all.
My spinal pressure was too high, higher than the last one in January, so he drained me until I was on the low normal side. I should be fine for about 3 months, hopefully.

I had to be on my back for 5 hours afterwards, I slept alot, got tylenol for the headaches you get after a spinal fluid drain and managed to keep myself on an even level.

Wednesday, I spent an hour and a half with the Psychiatric Liason, an MSW. Very nice lady.
I just opened up my mouth and words spewed out. Very cathartic. Things that I have never told even to my own therapist came out of my mouth. I cried, I ranted, I laughed, I talked.
By the end, all I was was tired. I was no longer lower than Ant poop.

But, I was exceptionally angry. (More later on what happened after I got home and spoke with the Neuro's office manager regarding that incident)

I came home Wednesday evening and my little boy, oh, goodness, I almost didn't recognize him, he looked so scruffy and furry. He was one long fur ball. He was so happy to see me and I, him.
It took three days for him to stop being attached to my hip.

My mom really did a great job with Jazz training wise. She kept up with his sit and stay commands and he is doing nicely with them. He even listens to me now much better. He is still puppyish in his playing, but he is learning not to jump on people now.

Man, did I miss my Shortie (his nick name when I do not use Jazz)

I am tired right now. I will continue again soon.

Nothing like a Two week holiday, and this wasn't that.

Okay,
so where was I when we last left off? .....

Go to Neurologist,who first asks, 'why didn't you come in yesterday?'
Can you say "F--- you?"

He says go to emergency room. I beg for a few days. I had a date with Mitchell that night and was going to a dinner with friends and psychic readings that coming Tuesday. I promise I would go to ER on Wednesday morning.

Guess where I end up that afternoon?

I got every neurological test under the sun.
Lets see...
CAT scan
EKG
EEG
Echocardiogram
MRI with and without contrast
MRA
MRV
Lumbar MRI
TEE(Trans esophogeal echocardiogram: done through an endoscope and the tool (?) can get the heart from the bottom up. Used to see if there are any blood clots waiting to travel. All I can say is, good IV drugs to put you out.
Lumbar Spinal Tap.
About 10 different blood work ups.

Positives:
Food was pretty tasty during my stay.
Believe it or not they had a really great vegi burger.
I had low cholesterol/low sodium diet but I learned to use sweet coleslaw on things.
Really great nurses, aides, PT's and OT's.
I did not have a stroke.

Negatives:
My Neuro groups newest doctor and the Physician Assistant. Two people with no business being allowed near patients.

Being far away from my Jazzy. He was so lonely. He finally curled up to my mom which was great but I was lonely too. My mom would put me on speaker phone and I would talk to my boy. He must have gone nuts trying to find me . I always heard him racing around and barking.

Putting my friends through not knowing where I was. It took a few days to reach my in person friends and without my wonderful adopted Momma Bess, my cyber friends would have continued to worry.

Really Negatives:
"According to these reports, there is nothing neurologically wrong with you. It's all mental, due to stress."

Now read back, oh say up where I said something about a Physician Assistant who should not be allowed anywhere near patients...That was what she said to me after my last test but before my lumbar spinal tap. I do have a herniated disc L4/L5 (which I already knew). But "All these reports say that it is not impinging on a nerve so that it wouldn't be causing you to not be able to walk without a walker".

AH, excuse me? So, you are basically saying that all my pain, herniated lumbar disc and headaches, and slurred words, weak left side, and all the shit I have been dealing with over the last year and a half is all in my(excuse the bad pun here people) head?


Ever see yourself as a train just as you are slamming straight into a brick wall.
Splat, then BOOM, pieces of me all over the place.

I am going to publish this now, I will continue when I get the rest of my "Head" together... ;)

Two steps forward, one step back

Tired. Headache. Can't speak the right words.

Left side weak.

PT won't let me do any exercises. Lets me call the Neurology office as an emergency

"No, ma'am, we don't consider this an emergency, the doctor is booked full. He can see you tomorrow at 10am. If you feel worse we suggest you go to the emergency room."

Too tired to argue. Mom argues. We come home and I take my pills like a good little girl and hope tomorrow is better.

No self pity. Just a statement from South Parks Cartman: "Fuck you guys, I'm going home."

I was doing so well. Two steps forward, one step back....

Night all.

Hmmm, what title should I use?

Sometimes it is really nice to have a good day.
I am having a really great food day today. I even have calories for a homemade blackberry smoothie for dessert tonight.

I took a 20 minute walk with Jazzy, all the hoopla (like that word?) of the impending Snow storm fell way short. Cars have a dusting roads and sidewalks are fine.

I then went downstairs to the apt gym and did 30 minutes on the recumbent bike. I ended up doing 9.2 miles. I set the machine to random and level 6. My butt is sore but I did it.

Tonight I am going to try an ounce of Salmon. The last time, at least 25 years ago, I had a piece I had an asthma attack. I am making grilled Salmon for my mom and just will taste it. If all goes well, I can incorporate that into my diet.
I am now eating some sort of fish at least 3 days per week. Two days per week is Chicken. Two days a week I eat red meat. I usually have soups for lunches, along with my protein drink.
Breakfast is oatmeal, low fat cottage cheese with a fruit cup, a bowl of Crispix, or eggs.

I weighed in today at 256.6. Now that I am back to mushies/real food, I have to really keep track of foods.

Desserts are hard. I love my generic vanilla, no sugar added, low fat ice cream each night. I am trying to remember apple sauce or just an apple but even with that, I still feel the need to give my inner 3 year old some fun.

46 days till next fill and official weigh in.

Doing, not trying.

Weigh in time

Okay, so I need to keep away from junk food.

I was back at 260.5 last month when I got weighed in at the Bariatric center.
Yesterday I weighed in at 259.5. I will gladly be happy that I lost a pound.

Got another .25 cc's put into the band and am now back up to 4.00 cc's of saline fill.
Liquids till Sunday afternoon, then mushies till Tuesday morning.

I got up and weighed myself here at home: down to 258.4. Amazing what you can lose when all you have is chicken soup and protein water with OJ mixed in.

I have made a promise to myself that for the next 49 days, which is the time period until my next official weigh in, I am going to consciously remember why I had this band put in, and comply with the banding rules. Protein first, chew chew chew, drink your water, exercise as much as you are able, and realize when you are "hungry" and not "head hungry"

Do, not try. Do.

Oy.

Discovering Passion

I remember when I was a Junior in High School, I, along with every other one of my class, were asked what they wanted to study in college. Seems like my graduating year (1980) class all wanted to be doctors, lawyers, or Lesbians/Homosexuals (no offence meant at all, my class of 608 people had a huge varied of differently oriented people).

I completely believed I wanted to be a writer or at the least an English Teacher. Writing always satisfied my heart and soul. As a teenager I needed to write. It helped get the mental toxins out of my system. So, I went to college as an English major. I had placed out of freshman English by taking the AP exam. So I was able to take sophomore english classes.

Then I hit Chaucer, in the original English and said, nope, not going to pass this class. So, I took Communication 101. It was a film/TV/debate class. I had a great professor and in the middle of 150 students I found myself knowing that I could still be a writer but also could be a visual communicator, ie: director.

I loved Film, I loved Television production. I learned most not in class but by volunteering at the radio station/tv station etc on campus.

I adored it, but looking back now, oh, 24 or so years ago, I don't remember if I had a passion for it.

I did graduate work and worked on a news show as a writer, director, editor etc. I enjoyed that.
I worked for six years producing/directing/writing local cable television shows. Live and taped. It stessed me out but I enjoyed most of it.

I got sick and lost what I enjoyed.

I was a customer service representative for 5 years. I was damn good at it. I had no love at all for it but the company was very good to me while I was sick.

I attempted to teach and help representatives become damn good at the job they did. I hated mine, I was not able to convey lies to them. Being a CSR sucks. You come away at the end of a day feeling like shit. You are yelled at by everyone and you have no autonomy. I learned that huge corporations can be very very stupid. I learned though how to be nice to people because being nice to people for the most part makes that person feel like a worthy human being.

I thought I had a passion when I was a paralegal. I was wrong. It was an interesting education and I learned alot but I did not love it.

On CK, Lorimak, and I thank her for this one, started a thread that got me to thinking and that began hurting my brain ;):

"Are you where you thought you'd be in life?"

When I was a teenager I just wanted to be thin, happy, married, and be a successful writer.

When I was in my twenties I wanted to be thin, happy, married and be a successful Producer/Director/writer

When I was in my thirties I wanted to be thin, happy, dating, and find work that did not make me insane.

I am in my mid fourties now. I want to be thinner, happier, dating, and work towards a Counseling degree.

I never before, except when I was a teenager and a writer, have felt like I have a passion inside of me.

So, am I where I thought I would be at this point in my life? Absolutely not.

Would I want to go back and live it over again, knowing what I know now? Probably not. I was a stubborn person, I would have made the same mistakes.

Life is a journey, a long, winding pathway that changes sometimes daily. I am currently exploring a new path. It will be interesting to see where it leads.