Monday, May 22, 2017

Dysautonomia

Thanks to my dad, I am getting an article about me and my struggle with Dysautonomia published in the local paper. When I heard, I went through a million emotions all at once;  excitement, anxiety, doubt, hope, joy, fear, pride, pressure and a sense of purpose. You may be thinking to yourself "Relax, it's just an article," but to me it's more, so much more.  It's finally an opportunity to make a difference.  If just one person reads this and thinks that these symptoms sound familiar, or they know of someone with these symptoms, it will be worth it.  If a doctor, nurse or care giver reads this and is more informed of the limitations and struggles we face on a daily basis, it will be worth it.  20+ years of living with Dysautonomia will have been worth it.

The reality of this interview hit me, when I started thinking about questions she may ask.  The medical ones are easy...

I have had it since I was 21. What began as the beginning of life as a new bride turned all too soon into a nightmare.  I am angry that it took 22 years to figure out what is wrong with me and I hope this article saves someone else from going through what I had. I've been to hospitals so many times that they know me on a first name basis. I've been to specialists at the very top of their profession and they look at me like I am crazy.  I have been through many MRI's, CAT Scans, X Rays, EEG's, EKG's, and Ultrasounds.  I have been poked and prodded as if I was a pin cushion.  I've had tubes where the sun doesn't shine and down my throat.  I've drank so many liquid concoctions over the years, that just thinking of them, makes me nauseas.  I've swallowed a pill that takes pictures as it moves through my body and I've eaten a nuclear egg.  I have been on so much medication and have gone through so many side effects that my body will probably never recover from.  I am so addicted to medicine that if I ever missed one, I would likely go into a seizure, that could ultimately kill me.  I've had doctors that threw up their hands and told me they had no idea what was wrong with me.  I've had doctors with a "God Complex" that told me it was all in my head and what makes me so angry at them is that after so long with no answers, you wonder if they are right.

It was diagnosed back in 2012 by a Gastroenterologist of all people.  I was seeing him for, well...gastro issues and he just happened to have a wife with Dysautonomia.  He started asking me some weird questions...Did I pass out? Fast heartbeat? Shortness of breath when doing the slightest things? Terrible with heat?  I would have loved to have seen my face at that moment because I just sat there with my mouth open staring at him and with each question came a louder "yes!"   This was the beginning of a new chapter, but at least I knew I wasn't crazy and that in itself, was a relief.

How did it impact your life?  What's the hardest part about living with Dysautonomia?  

This is where it becomes more difficult.  Loving sports and being a total tomboy, I was in my element roughing it up with my 3 boys. (two kids and a hubby) Now I watch sports on TV.  I used to love shopping with my mom, but now it's online or not at all because  I can't walk through a store without getting winded and dizzy. I loved to sing, in the shower, in a choir, didn't matter where and when. I had a beautiful voice yet now it's raspy and cracks. Now I listen to music.  Enjoyable, but just not the same.  Dancing...(sigh) probably one of the things I miss most.  We had a girls night at a local bar and would listen to an awesome band and dance the night away.  The closest I get to dancing today is watching "Dancing With The Stars."  I look in the mirror and I don't recognize the person staring back. She is a stranger to me in every way.

Thursday, May 04, 2017

A Day with Dysautonomia.....

A Poem I Wrote.... A Day With Dysautonomia

I was feeling a bit discouraged and tried to put it into words...



A Day With Dysautonomia

My tears, they fall down like rain,
I try so hard to hide the pain.
My broken body, tired and bruised
My spirit, my hope so cruelly misused.

Acceptance seems so hard to find
Limits and sacrifice consume my mind.
I long for sleep to end the sorrow
Another day, another tomorrow.

Gravity my enemy, salt my new best friend
Mixed signals to my organs, my defective brain sends.
Blood pressure, too high or low
Heart rate, too fast or too slow.

                                                Light headed and dizzy                                                  
Simply by standing,
Walking a few steps
is incredibly demanding.

My chair, my refuge
Just a few feet away.
My comfort yet my jail
I will spend most of my day.

Existing in a vessel
that I can not control.
It takes a toll on my body
and it tortures my soul.

With each new treatment
 I give it my all.
Yet with every turn,
I face another wall.

Normal is not a word I hear,
Life passing by is one of my greatest fears.
Happy, laughing, smiling,I loved to play
Angry tears fill my eyes, when I think of those days

I don't look in the mirror, I'm too afraid to see
the empty, sad face staring back at me.
Yet deep inside, my faith is strong.
It refuses to quit,and gives me the strength to go on.

A silent prayer to get me through the day
A deep breath and I am on my way.
Little steps are all I can make,
But I find out that it is all it takes.

By
Jennifer Crispaldi

Why?

Why

Time and time again I fall down
Tryin so hard to get up off the ground
I look up to the sky, with tear filled eyes
 Begging Him to tell me why.

Why am I here, what have I done
To deserve this endless pain I’m suffering from

What can I do, what can I say
To make this hurting go away

The silence is deafening saying so much
I need your love, your healing touch
I take one step forward and two steps back
Desperate to get off this track

Tell me..
Why am I here, what have I done
To deserve this endless pain I’m suffering from

What can I do, what can I say
To make this hurting go away

No matter how hard, take it day by day
Keep on fighting, find a way

One day I will have the answer why

Until then I sit and cry

So Tired Of Pretending

So Tired Of Pretending

So tired of pretending, for a moment the mask slips away
Revealed is a tired ragged soul just trying to get through the day

The truth slips out in my weakness, the bitterness that I just can’t hide
My true desperation, that I keep locked deep inside

They can’t understand the hopelessness that haunts me day and night
But they are the reason that I continue to keep up this fight

Betrayed by my body, a vessel of muscle and bone
Invisible shackles bind me and keep me at home

I look out the window and wonder what it would be like
To simply walk in the park or go for a ride on my bike

To have the ability to just up and go, that precious freedom lost
Taken for granted by many, to me it comes at too high a cost

I cry silently, tears slipping from my eyes,
I just can’t hold them back, no matter how hard I try

I dry my tears and slip my mask back in place
The facade up again with a smile across my face

Another day has come and gone,

So tired of pretending, that nothing is wrong