A Movie Suggestion...

So....I thought I'd share something funny with you. Recently I watched the movie Ghost Town

and Oh My!! is it funny. If you've ever gotten the run around from a doctor, had a colonscopy or even been to the doctors and had to answer a thousand unimportant questions.......then you should watch this movie! It's totally worth it!

Update...

Woke up early this morning to change my shirt......I was so wet from the night sweats....I had caught a chill. Actually, come to think of it, I do believe I woke up Sat. and Sun. morning wet, too.....Just not as bad as today. My breast 'cyst?' is swollen......I'd almost swear this thing is spreading into the left side of my breast...The 'cyst' sits directly on top. Last April, I had surgery to have it removed, but instead they found a tumor, thought it was the 'cyst' and removed it. *The tumor was benign!! But I still have the lump. Most annoying!

I've been really tired....Could have something to do with that busy week I had last week. PVC's have been acting up, but not enough for me to complain about yet. Still having speed issues with it, makes me out of breath. Stomach started to get stupid yesterday morning~ so I took a Levsin, and all was well.

Not much else is new......or exciting. Just hung around the house this weekend......and took it easy. I so wish I had the drive and the energy to really scrub these floors.......It wears me out just thinking about it, lol. At least I'm thinking about it right?! Hahahaha....

I just found this link to another blogger who has dysautonomia...and there's some really great videos explaining things in a way one can understand....

http://wheredidigetthislemon.blogspot.com/2008/12/informative-pots-video.html

Check it out when you get a chance...

Ok...So I just got done reading Lauren's whole blog and all I gotta say Is Well Said! She takes the words right out of my mouth! Seriously....go check it out!

CT Went well...

But like I said to my bff yesterday.....Why does something so simple, always have to be so hard with me???? OK...So we got to the Imaging center at 10:30....checked in, and had a seat. Rachael Ray was on.....Then the nurse came to get me and told me that they were extremely backed up at the moment (The ER uses this center for it's ER patients) and that she wanted to get my iv line going that way when it came time to get the CT done...we could just get er' dun! She realized right away that my veins were hiding, and I informed her that they had a mind of their own, and some days they worked, and some days they didn't. She went and grabbed a baby needle...and started on the left arm....and well, that vein didn't hold up. So she left for a minute and came back with 5 more needles. LOL...This is where a normal person would run for the doors... LOL, but I knew she was just grabbing a handful so she didn't have to keep walking back there. Next she tried my right arm, and after fishing around in there for a minute, she got one. Once she got it in, she sent me back out into the waiting room. I had to laugh when I came back out and the bff started to get up...I told him that we weren't going anywhere...and showed him the lovely thing now hanging out of my arm. So we sat and watched the View....and then the news.......And then the lady came back out to get me. She apologized for the wait, and I told her I understood. (In case you're not catching on to my time references-the tv shows, I didn't get to the back until after 12:30ish)

When we got into the CT room, I asked her if I needed to remove my bra, because of the under wire.......And as she was turning back around she said, "Yeah, Do you want me to get you a gown?" Hahaha.....but I already had my bra in my hand....And she laughed and asked me what I did for a living....LOL< I have had so many CT done, I know the drill....so I wore a strapless bra so I could easily take it off and still keep my tank top on. It was funny...wonder if she thought I was a stripper or something, Now that's hilarious! So...on to the CT................That part was normal....Lie on the bed, they take a couple of pictures...they feed the contrast through the IV, take a few more pictures......and then a few more....and then your done. After the dose of contrast...I got cold.....really really cold. That's another lovely side effect of the dysautonomia....my internal thermostat is broken. And when I get cold, my body shakes and my teeth chatter. I explained to the nurse that this was normal for me, and that as soon as I got outside I would be fine. As I was leaving she told me Next time, She'd let me do my own CT, LOL!!

Of course the bff was laughing at me when I came out, cause I was almost running for the door. He knows the drill! After, we came back by the house so I could Pee for the fourth time....I went to rest room 3 times while we were there~ All that stupid water they made me drink before hand.....added to having to actually sit in a chair! Not fun!!!

After we went to lunch.

When the nurse asked me what I did for a living, I told her I was disabled. And she said what no one ever says, but I can tell they're thinking it, "You don't look disabled". And I said thanks. She also made a comment about how pleasant I was about all of it. This made me giggle. A couple of years ago, I wasn't very pleasant. In fact, I was down right Mad at the world! And I was in pain, and getting the run around about it. Now, I have some amazing Doctors.....and we are all on the same page! For those of you out there that are 'sick', Hang in there: Don't give up! You just have to find a doctor that will listen to you. Now that I actually have answers to my questions, I am much more at peace with myself. Plus, because of my heart, I try to keep my cool.... I don't argue like I used to, I just don't have that kind of energy.

Unless I'm at a fast food place....I went to Mc Donald's last night to pick up dinner, and decided to go inside instead of the drive through because I had a big order. Anyways....the girl was moving really slow, which really annoys me, Hello: It's suppose to be fast food. And when she was packing my order...She asked if I wanted her to put them in separate bags or one big bag....And I simple said "You can put the Happy Meal meals into Happy meal bags and Put the 2 combos in the same bag." I mean come on....Do I really need to explain to this girl how to pack our order??? The guys behind me were laughing because I said it sooooooo slooooow. LOL, So times you just have to break it down for people! Duh! Come on People, Let's get it together.

LOL...My oldest the other night made a comment about starting a blog about how embarrassing it is to go out in public with me. Hahahaha! That was after being in line at the drive-thru and me pointing out the customer in the store that had left his car running in the parking lot with his radio on. It was so loud, they couldn't hear anyone on the drive through speaker box talking.
When that guy came out of the store, I was still fussin, and my son was ducking down in his seat, worried "I was going to get him shot"!! LOL, I told him I wasn't scared of that 'kid' and that he probably couldn't even hear the words coming out of my mouth because his dang music was so loud! LOL......

Oh...crap...look at the time....I have to be at Physical Therapy in 30 minutes and I'm not even showered yet! ok....TTYL

Me

Uh............ Duh!!!

So, after I got up this morning, I went in the kitchen........made my usual glass of Carnation Instant Breakfast and sat down to read my email. I took one giant gulp.....and then remembered: I can't eat anything! What in the world was I thinking, lol..........I can't have anything for 4 hours before the CT, and I also have to drink a BIG glass of water 30 minutes before. So while taking my kid to the bus stop....it's raining cats and dogs here......I stopped in 7-11 and -well, I made the kid run in cause I'm still in my jammys....Anyways.....I've got my bottle of water, letting it warm up now. Can't drink it cold or I'll get sick (My IBS will kick in). *LOL~ I'm the girl that goes into a restaurant and orders a room temperature glass of water.....haha, and you should see the looks I get, Bah hahaha......Now we just go to the same restaurant all the time, request the same waitress and she knows....lol....actually she knows my whole order, Right down to 'hold the caramel, and don't forget the butter'.....hehehe....

OK, I'm off to shower and then out the door I go......

Weekly Update

I'm still here....I just have a hard time writing everyday about how I feel like crap. I want to be able to share the highlights of this adventure......and keep you interested enough to come back for more. So with that said.....

I started Physical Therapy again today. Actually, I was there last Thursday to get re-evaluated. But today........we actually 'worked'. So let me tell you a little bit about the kind of PT that I go to. It's for my bladder: For the Interstitial Cystitis (IC) , and I'll just say they get very personal with me. I have muscle spasms most of the time, and the PT finds them and then drives her fingers into it to get the muscle to relax. Some days it doesn't bother me....and then some days I walk out of the office looking like I just got off a horse. LOL.......I tell ya, the things I go through to have a normal life, is anything but normal. There's even a 'probe' that goes inside of my Vagina to record the muscle spasms......When I started this years ago, I was at an 8/9.........And last week I registered at a 5/6.....I have learned over time how to get it down to under a one...but I have to lie perfectly still and I can't talk. LOL, talking makes my numbers jump through the roof every time.

The PTs also work on my abdomen.....and it does help. I notice that when I'm in PT, my bowels are more regular. *Sometimes they (my bowels) forget to work, and I have to 'jump' start them. If your ever constipated......rub you tummy in small clock wise circles, and I promise, it helps.......
So does a bowl of Raisin Bran!

They've also done a lot of work on my back. I slid into home base on a concrete court when I was 7ish and it somehow curved my tailbone up. Yes, I actually have a nub back there. Now that I'm starting to gain back some of that weight I lost, it's not so bad.......But, dang! When I was really skinny, I used to get bed sores on it....And I can't have any kind of surgery with being on a doughnut on the OR table (Unless my feet are in stirrups...somehow doing this makes my tailbone flatten out better). That was something I learned the hard way...I think it's when they move me from the OR table to the bed, they put me down butt first. And it messes with those nerves. It was so bad one time, I had to go get Cortisone shots into my tailbone. That hurt like a son of a bitch!!! But after a couple of days, it was All better! I'll never go thought that again.....I hope. Now I come prepared, with my trusty blue doughnut that always seems to deflate before surgery is over. And actually, when I had my breast surgery, they lined the OR table with that egg crate stuff, and that worked!!!! LOL...I really shouldn't know this kinda stuff, but I do....Maybe one day I can write a book on becoming a better patient. The things you need to know.....lol...... Oh and it would definitely have a chapter on tests and what they really feel like. I swear sometimes the science of medicine is so Barbaric!!! Just the other day....I was talking to someone about how they are now trying Botox injections into the pelvic floor to control muscle spasms......Good Lord.....Not me! Now way, no how!! I am curious to see if it helps this patient though......Medicine can be an interesting topic, huh......

Oh, and at the Heart Center, they have this thing I think they call the 'slip and slide'.....It's this big Yellow sheet of plastic that they slide under you, so they can slide you from bed to bed. I think because of the catheters, they can't bend your legs. LOL....that's the worse part of the ablations....Taking these freaking catheters out! Now that's painful!

So, back to PT.......Today, it got me.....lol......When I left, I was very sore.....my hips/hip flexor area were bugging me the most! Have that 'horse' syndrome again, haha! Took a Valium and things have finally started to quiet back down. Stupid hips! You're not suppose to ache this bad at 30!

I finally got over the migraine spell from last week, and now my body just wants to sleep. Still dizzy, coming off the off ramp tonight had me feeling drunk! Breast cyst? isn't swollen at the moment, but I've been having horrible chest pains, and it radiates down my left arm, almost numbing it. Not sure where that's coming from, but I figure I haven't falling over dead yet, So I'm good. LOL. Bladder is nice and tingly.....and my left-back side is swore~ Muscle pulled or kidney....take your pick?! Did have a mild headache today, but a 2 hour nap took the edge off. Doing good about remember to take my morning meds! Can't tell if they're working yet or not. PVC's not too bad.......But my heart speed is up. I think it was yesterday?- But my heart felt like it was trying to kick start itself~ felt like I had Thumper in my chest....not to sure what that was, but OK.

Hey, at this point, I'm just along for the ride.....haha.

Have a CT in the morning~ My blood count in my urine was kinda high the last time I saw the urologist...So we're just doing a routine check up. I haven't had a normal CT in years....lol.....Nothing ever serious, but a normal CT would be nice.

OK.....off to go find something to eat......Gotta make sure it's something light~ My bowels move so slow that what ever I eat to night will be in the pictures tomorrow, haha.

Until Next time......

Some of my favorites...

Thought I'd transfer some of things that I have written in my Myspace account over to here....

Here's the letter I wrote on my 30th birthday:
So…on Easter Sunday I will be 30. And I’m not too sure I’m happy about it. Don’t get me wrong, I’m happy to still be here……..I just feel like I’m way behind! I’m suppose to have some kind of career by now. ….And a house instead of a broke down trailer in the middle of the ‘hood’….I want more……I’m sure there’s many of you out there that see me as a girl who sits and plays with her toys all day long, while the bf goes to work to pay to bills……If that was only half of it……You think I like living off a man……I don’t. I want my own money….My own independence. But, isn’t that what life is all about….Wanting more, wanting the best. For a long time, I have just felt blessed to be here……17 surgeries later, and I’m still alive. No, I don’t have an illness with a death sentence……Instead, I got sentenced for life. Ugg!!! Yup!….Today I’m having a pity party, however I don’t want your pity, Hell I could care less what any of you think of the situation! I can’t change it….spent many years in therapy to learn that….but I can learn to live with it! I have found out the hard way….Most people can’t handle me being sick…or they simply just don‘t want to ‘hear it‘…. I wish I had that choice. Even when I run from it….it follows me. Some days I don’t want to fight it any more….some days I feel the need to conquer the world…….and some days I just want to pull the covers over my head and pray that when I wake up everything will be normal again….LOL, What is normal anyways? I seem to have forgotten. So here’s to spending my 30th birthday, with my family…..on Easter. I only wish I could get the bf to come with me….Guess I’m not as exciting as his friends are on their birthdays? Oh well……Life goes on….

Here’s to making it a whole year without having surgeries! April 16 2008 was my last, the doctors went in to remove a cyst from my breast, and came out with a tumor…Lucky me still has the cyst, Woo-who!

Here’s to my insides not falling out again, and to all that physical therapy I have gone through to reteach my bladder and bowels to work right……Thanks to the wonderful people at Sentara PT for helping me get here. And to my Head doc for keeping my head above water……

Here’s to Not getting a pacemaker before I turn 30! ……here’s to finding the best Heart surgeon I could~ and here’s to going through 3 heart surgeries…Oops…I mean 4, forgot about the first one when I was 2.

Here’s to the 20 pounds I’ve gained!! *Here’s to having my ass back! Woo-who

Here’s to ALL my Blog friends (*and a few of you Myspace peps! You know who you are!)…from Wisconsin, to New Zealand to Wales…Thanks for keeping my mind off being sick! Thanks for encouraging me to build my dreams…….

Here’s to my BEST girl friends…..Why do all of you have to be so far away?? From Arkansas to South Carolina to Pennsylvania…I miss you guys!

Here’s to starting the teen years with my kids, I only pray they don’t follow the path that I did!

Here’s to my bestest buddy…Thanks for always being there when I need a friend, even though you’re a big dummy sometimes! I still love you!

Here’s to keeping your promises…You know your word is all you really have to give.

Here’s to the fuckers that took what didn’t belong to you…May you have a life time of what’s coming to you!! My kids should of never been involved!!! Shame on you!!!

Here’s to not letting other people’s happiness get in the way….Or their drama…..or my drama…

Here’s to the next 30 years…….Can’t be any harder than the first 30 years……..LOL, Maybe I shouldn't say that out loud, huh?? Here’s to the Prime of my life, as a friend recently put it ;)

Here’s to the cats……Thank you for keeping my darkest secrets to yourself……

Here’s to seeing the world…..one small step at a time…..

Here’s to my Mom…THANK-YOU for teaching me what it means to be a strong woman…..and never letting me give up.

So…here’s to many more birthdays…..and hopefully only a few more surgeries……Life goes on…. Right?

A Letter I wrote about stress:
Gees, I'd really like to sit my doctors down and explain to them STRESS!

Stress is when you can't get a follow-up after surgery for 3 months, then the day before your suppose to see the doctor, the nurse calls to say that she has to reschedule you for a month and a half down the road.

Stress is when go to the doctors and are suppose to get a follow up with a specialist to check on something pretty major....and your are forgotten about. And I have even been nice enough to call and remind them, SEVERAL TIMES!!

Stress is when your insurance company thinks you've had enough physical therapy, and your doctor thinks differently. Stress is waiting to find out whether or not it has been approved!

Stress is when you take paper work in to have your doctor fill it out, and they send it to the wrong place. Or the paperwork gets shifted to the back of the doctor's desk, and is forgotten about. And then certain companies think your lying cause the paperwork is MIA.

Stress is having to go in to a new doctor and explain my 16 surgeries, and relive the horrific details, over and over again. Hello, I have a hard enough time remembering it all....and if I don't tell the new doctor something about my medical history, it's like it never happened. Yup, what you say to one, and forget to tell another, will make you look like a liar in front of a Judge! Oh, and if the right paperwork isn't in front of the judge, it's like it never happened.
UGGGGG..... I could pull my hair out this morning...

....oh, I almost forgot....
Stress is when you hire a lawyer to handle your case for you, and she drops off the face of the planet....not that I was all that impressed with her from the beginning, but still......HELLO, It has been 4 months since I have heard from her!

Here's a really great link:
A friend of mine sent me this link, and I just wanted to pass it along to you. I don't have Lopus, however, I can completely understand the 'Spoon theory'!! It's a great way to explain what it's like living with a chronic illness! Check it out.
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

A thought on Life:
What do you believe????
I believe in the human race. I feel like earth is God, our mother. She gives us everything we need to live~water, land, air, ect. And as long as we take care of her, she will take care of us. But, we as a human race are not. So many people are caught up in greed they can't stop to see what they are doing. Technology is a good example. Why the hell would anyone build a Nuclear warhead? HELLO? We all have to still live on the same planet! You can't take your money to the grave with you and yet we all depend on it to 'survive'?? And what does survival mean?? To some people it's having the biggest and most expensive THINGS. I want to know I lived! I want to smell the roses everyday and say thank-you for putting them here to show us your beauty. I want to stand at the top of a mountain and take in her warmth. Do you follow? I agree in giving back, and I agree with your statement about treating others the same way you'd want to be treated. I believe in Karma, and what you do comes back to you!


And I'd like to end with this point. I think people rely on the idea of GOD to much. I know someone who said he found GOD and was cured of his lifetime addiction to drugs and lies, and yet it was the biggest lie he ever told. Why not believe in yourself? Being at the hospital this past week, I have heard my fill of GOD. GOD will make it better, GOD is there for you, things like that. Now, I see it like this. I believe in my daughter and every time she says she can't, I say she can and she does. I keep telling her how brave she is and how strong this is going to make her. I want her to believe she can do anything if she puts her mind to it....OH MY~I SOUND LIKE MY MOTHER!! But she was so right. People need to have more faith in THEMSELVES and not some idea.

April 25, 2007
On another note....... I had a moment this morning, and wanted to keep a hold of it. A friend compared Life to a Rollercoaster and I wanted to add my two cents. Even though I have never been on a rollercoaster, I can still voice my opinion, right? LOL ..Is your seat belt on tight, hun? Cause this rollercoaster you speak of is bumpy, and curvy, and it is designed to give you the ride of your life. You just gotta learn how to hold on to what matters most and let your hair blow in the wind along the way. Even when you ride it for the first time, you have no idea what to expect....but you know there is an end. And when the stupid thing makes you puke, You say, "Damn, that was fun, I'm doing it again!" We all do it, right? And you know there is generally a BIG ASS sign at the entrance of a rollercoaster, that reads something like "Caution, or Warning." But we stand in lines for endless hours, waiting. Waiting on our 2.2 minutes of freedom.

A Poem:
'I Will Survive'
It eats at me.
Every day,
I can feel it.
But we can't always see it.
I have to stare at it for awhile,
Daydream,
Put myself into it.
Ask myself where is the truth in it?
Surround myself with it,
Become it,
Drown myself in it.
Remembering I need air,
Forgetting all the rules,
I submerge.
With every breath I take,
It comes to.....
I've survived,
I will survive!

Another Poem:
'Katrina'
They said it was coming,
and no one would listen.
I said it was coming,
and they would not listen.
They said it would be the storm of the century,
and no one believed.
I said it was the beginning of the end,
and they said I was crazy.
Well, the storm moved in,
and THEY had to listen.
Devastation was everywhere.
THEY had to act fast!
But THEY were too late.
Total destruction, total chasos.
Now, when all was said and done,
THEY remembered.
Someone had said it was coming.
I said it was coming.
But no one would listen.

I realize that you may not understand the karma here. Let me explain. The day of hurricane KATRINA~ I, Katrina had emergency surgery. I had told the doctors for months that something was wrong, and they didn't listen until it was to late. Moral of the story, TRUST YOUR INSTINCTS!