Thursday, February 28, 2013

First day of PT

I just realized something.
I'm angry.
I am...I am freaking livid.
I know, I know. I've stated all of this wonderful, soulful.."Oh, I'm just so thankful it's something treatable"
We both know that's the way I'm supposed to feel.
But today..let me tell you how I really feel.

I'm sick of trying to fit into the shell of what a person with a life altering illness is supposed to think say and feel.
I'm tired of being gracious about it.
I want to scream....
I want to cry (I'm doing that like a pro these days)
and I want to really hit something so hard that it shatters.
I mean total annihilation.

I don't want to be this pansy person.
I had hopes and dreams.
I wanted to climb Mt. Everest.
I wanted to cheer in college.
I wanted to run a marathon.
Did I want to or did I just want to want to?
No..I really wanted to.
I never could hold up. I was tired so easily. My friends were running their little legs off and I was like.."Hey, how about I go get water for everyone.".. (And I was a damn good water getter).

What brought this on?
Well..I had my PT evaluation today.
I kept thinking about all of the things I haven't written anywhere.
The things that are in my head that should be in a book somewhere for someone like me to read!
Like..Have I ever mentioned that I can trace my symptoms back to age 13?

I'm 13, chilling at the country club, eating crackers.  (Nekot's to be exact)
and a couple of my teeth crumble...I mean..fell into pieces.
Come on..It's just a CRACKER!!
The dentist scolds my mom for all the Cokes she drank while I was baking in her oven..and proceeds to put pins in my teeth to hold them together.  By the end of the summer, I had pins in all of my back lower teeth.
After that, I just dealt with headaches, fatigue, leg pains, etc. The local dr. always chalked it up to growing.
Scoliosis..hyper mobility of joints (aka double jointed)...Mom was told to put me in aerobics.
Aerobics? I lived in the Mississippi Delta..Aerobics were chasing the horses when they got out of the pasture.

Do you think anyone...ANYONE..could have cared enough to look a little know..actually do their job? Ehlers-Danlos Syndrome ...c' attention. Scoliosis, double jointedness (not sure that's a word), tooth crumbling... Investigate...CARE!

(I'm's that kind of day..I want to scream.. know what, you voluntarily came to this you see is what you get.)

Today.. is not the day I will be noble and selfless. lest for the next hour..I will saturate myself in despair.
I want to get it all out...and I warn won't be the last time.

Fast forward,  I'm 24.
I've had two beautiful babies, one only 10 mths old.
I get the diagnosis.  "Cervical and Uterine carcinoma in situ".
(Like my doctor wrote when he faxed the pathology to my ex husband...who still maintains that there has NEVER been ANYTHING REALLY WRONG WITH ME.....this means CANCER.)
Fine..I have a hysterectomy.
A few months later..adhesion problems.   Laparoscopies for adhesions x 5 over the next few years.
(EDS is linked to adhesions and abnormal wound healing...I''m just sayin').
According to the's "all in my head".   Because, as we all know, surgeons and microsurgeons just cut, lazer and bovie people for the heck of it. (as a each case, adhesions were removed and organs freed...not all in my head)

Fast forward again,  13 years ago.
I wake up, with this horrendous black breast discharge all over my pajama top.
I call my we go to the first of 4 physicians who test me for every type of cancer, perfom a galactogram (you don't want to know), and ultimately say it's benign drainage and remove all of my milk ducts from my breasts.  ALL of them.
I had lovely penrose drains that I had to remove at home from this surgery.
Blood work was done on the pituitary,
but NO ONE thought to order a brain MRI and actually look at that gland.
See..I found out last October that my pituitary has been flattened for years, a condition called Empty Sella Syndrome. The pressure from the Chiari Malformation basically squished my pituitary flat..and that causes..dom dom guessed it...breast discharge!!  AAARRRGGGGHHHHH!!!!!

I could go on and on..but I think that's enough for today..and I need to break from the laptop, and to calm down, crying makes my head pound. 

One last thing I want to say to the Ex...You were right..It was all in my head, but I did not need to be told that over and over and over...I did not need to be chastised for my health for 20 years. I did not need to be yelled at and called names and made ashamed of  having medical bills.  I did not need it and ...usually, I'm not bitter or angry..and usually I think I've forgiven you ...but today...just for today..I'm mad and I want to be normal and healthy. I want to be bright and shiny. 
I'm just a person...that is ALL I AM!

I will leave you with this great quote by Elizabeth Gilbert that I found this morning.

“I thought about the relentless thought-processing, soul-devouring machine that is my brain, and wondered how on earth I was ever going to master it. Then I remembered that line from Jaws and couldn't help smiling: 'We're gonna need a bigger boat.”
Elizabeth Gilbert

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