Monday, July 03, 2017

How are you?

It's such a simple question and yet for me, it's not.  I think people ask this question out of politeness and traditional greeting but don't really want to know how I am.  My usual answers are "hanging in there" and "getting by day to day." Sometimes I will throw out the "I'm crappy" when I forget to slip on the mask and show some of the misery that is my everyday.  Maybe I just need notecards to hand people when they ask that dreaded question. How am I?  Do they really want to know?  I mean really?

That I've not only hit rock bottom, but that their are 200 lb weights around my ankles, holding me there.  Every morning I wake up and catalog the aches and pains.  Nausea? Yep, hopefully I can get through my pills and a few bites of my breakfast biscuit.  Feet pain? Yep. I can barely walk but I manage to limp to the bathroom and go sit in my chair.  That takes a long time because well, sometimes when I stand up, I pass out because my body can't regulate itself. Kind of a 50/50 kind of thing, will I stand or won't I. Just getting to the chair is a huge accomplishment for me, but if I told people that they would probably look at me like I had two heads or something.  By the time I sit down I am completely out of breath and have sweat pouring down my face. (My body doesn't regulate temperature either.)  I guess it's a win though, I didn't have to go to the ER with yet another concussion. Yay, for me!

I don't like mirrors, in fact it's more of a hatred, loathing kind of relationship now a days.  It wasn't always like that though.  There used to be hope and a certain spark inside my eyes instead of this empty and defeated blank stare that greets me now.  She is nothing but a shell of the charismatic woman she used to be. She used to smile and laugh, put on a little make-up, do her hair.  It crushes my spirit to see me like this, so if you see my hair looking a bit dishelved, blame the mirror.  A shower is a luxury that I can't afford most days.  A shower seems so mundane, but it's a project for me and I am usually done for the rest of the day.  Somedays I wonder what it would feel like to just lay back in a bubble bath, but we have a itty bitty square shower that I can barely move around in, but hey I am thankful that it has a toilet so we don't have to run upstairs to use the latrine (that's what my army son calls it...and it kind of stuck)

But I digress...Where was I? Yes, get to the chair barely in time for Johnny's call, and you guessed it, asking how I am doing.  At least with him I don't have to paste on the usual mask though.  I say, stomach, feet, bladder, dizzy, head and he gets it.  There is only a handfull of people that can read me like that.  I try to forget life for a while on the computer, and it actually works for a little while until another phone call, this one from the dreaded collection agency.  A bitter laugh escapes me because if they only knew how much I owed hospitals, radiology, doctors, laboratories, specialists and other various doctors, they would put a label on my account that said "Not a chance."  We live in my father in law's basement, I get around $800 a month and guess how much goes to insurance?  $400 + (I forget the exact figure but it's a good bit over)   Yep, 400 bucks for just me and some people ask why I hate Obamacare. And the kicker....it doesn't even cover me for everything. Ok, enough politics...

I hate seeing peopIe, even being around them because this mask is heavy and it takes a heavy toll on me. Everytime I peel it off a piece of me comes off with it. I am bitter and I try so hard not to be, I really do. I feel like I am in jail, a comfortable one, but a jail just the same.  I see steps that look like Mt Everest, and for me, they are.  I really try to think of those less fortunate, because there is always someone worse off and it helps for a little while.  Then something reminds me of my current situation and I get depressed again.  I feel lost, like the world is spinning around me and all I can do is watch.

To this day, I still wonder how my husband and parents have stuck around for 25 years of this.  Probably the same way I have...faith and unconditional love.  Well the brain fog (another fun aspect to Dysautonomia) is starting to set in and I am having trouble getting my thoughts together, but let me leave you with one last thing.                                                                                                                                                                                                                                                                     Think about the question "How are you?" from a person suffering chronic illness' perspective and perhaps you will understand why we hate those three little words.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        

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

Tuesday, January 31, 2017

Insignificant...

Insignificant.  That's the word I've been looking for.  When people ask how I feel a million words come to mind...crappy, tired, frustrated, exhausted, sick of being sick, lonely, sad, hopeless, lost, or my usual go to..."hanging in there."  I am not exactly sure where there is, but it seems to get the point across.  Today, a new word came to mind though...Insignificant.  Absolutely. Positively. Insignificant. 

 I sit here and watch the world go by without me.  My youngest son goes to school and plays soccer, my oldest just graduated from the military about to enter a whole new world with college and hopefully a job in law enforcement down the road.  My husband is involved with work and a new promotion, which I couldn't be more proud of! He deserves it and so much more!  And me...I just sit here in this old uncomfortable chair in a cold basement, unable to get up the stairs, watching and waiting.  Waiting for the next obstacle that I have to overcome.  Will it be walking, talking, breathing, pain, dehydration, nausea, depression or trying to figure out how Obamacare will once again screw me over.  I won't even get started...

I have no purpose, nothing to offer.  I could disappear for a day and nothing would change.  Life would go on just like it usually does. There is a song I remember from Michael W. Smith that seems to express my fears and my struggle most eloquently... Place In This World. 

The wind is moving
But I am standing still
A life of pages
Waiting to be filled
A heart that's hopeful
A head that's full of dreams
But this becoming
Is harder than it seems
Feels like I'm

Looking for a reason
Roaming through the night to find
My place in this world
My place in this world
Not a lot to lean on
I need Your light to help me find
My place in this world
My place in this world

If there are millions
Down on their knees
Among the many
Can you still hear me?
Hear me asking
Where do I belong?
Is there a vision
That I can call my own?
Show me I'm

Looking for a reason
Roaming through the night to find
My place in this world
My place in this world
Not a lot to lean on
I need Your light to help me find
My place in this world
My place in this world

Looking for a reason
Roaming through the night to find
My place in this world
My place in this world
Not a lot to lean on
I need Your light to help me find
My place in this world
My place in this world

Looking for a reason
Roaming through the night to find
My place in this world
My place in this world

Here is a link if you want to hear it, it's really a beautiful song! 

I need to find a purpose. I need to find a place in this world, where I make a difference.  I refuse to believe that this is all that God has planned for me but I find myself desperately "looking for a reason." Asking why? Why me, why now? Why?  Some days like this one it's just an overwhelming feeling that gets the better of me.  I know the old me is gone, and I try so hard to live with my limitations, but I miss her so desperately sometimes.  I feel like no one really understands how lonely of a place "no where" can be.

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.”