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.”





Thursday, September 15, 2016

Why?

There once was a quote from a movie, "you can't win no matter what you do" and today, I heartbreakingly realized that it was true.  No matter how hard you fight, how many times you try, how much work you've done, how much effort you put into something, no matter how motivated you are, how positive you are, it just doesn't matter.  Nothing ever works out the way it should.  I've seen it time and time again and I keep fooling myself thinking that our "luck" has to change sometime, somewhere, in someway, right?.  All this trash that we've had to crawl through for so long has to have an end.  A place where we can just shake all the bad and negative away.  I look up and see a mountain of trash ahead.  I am tired and weary.

Why fight?  Why try? Why put your all into something that won’t matter.  Why put your heart into something that is destined to crash and burn?  Why, when I fall, do I get back up, only to fall harder and suffer more?  When do you say enough is enough?  When do you throw the white flag in and surrender to the inevitable?  When do you toss your dreams aside and just accept that you will never win.

“Never surrender” “You can do anything you put your mind to”  “Hard work pays off”  “Never give up”   They sound nice but in reality they are nothing but words.  Words that are meaningless.   The lazy win, the bad wins and the popular win so it really doesn’t matter in the big scheme of things.

Wednesday, April 27, 2016

To All Trump Supporters...


I've been tweeting like a madwoman but they only give you a few sentences and I am not quite up on the shorthand of it yet. (although my are is now R and my you's are now U) Ok, back on topic  The frustration has been building and building as the weeks go by and Trump supporters (Ts for short) still don't get it.  I have been asking Ts why they are voting for Trump?  The answers I have received scared me for my children's future and the future of the country. 

1) He's a successful businessman.  First and foremost, No, he is not. He claims to be worth 10 billion when Forbes has him at 4.1 billion. Only a 6 billion difference but hey, he was close. Accuracy is not a strong point for him obviously. I wonder if that is the real reason he won't show his tax returns? Hmmm.  His father gave him & his brothers 200 million, so each came out with 40 million.  If he would have simply invested it, it would be worth so much more than Trump's value now.  I went with rolling stones because it was the first one I saw but the same can be seen by just about any paper or YouTube video out there. Just type Trumps failed businesses.

Daddy's Money

Failed Businessman

2) He's a fraud. He is being sued by 2 different people for fraud in regards to "Trump University."  Yet another criminal running for office.

Trump usesTrump University a total scam.

3) Explain this to me please. Why would you think Trump, a man that makes the Trump line of clothing in China, would suddenly care about American businesses?  

Trump clothing and other products made out of USA

4) Why would a man who is running so hard against immigrants, use illegal immigrants in his hotels?

Trump uses illegal immigrants

5) Trump uses the best words.  Look at one of his speeches and try reading this out loud.  If you would rather hear these words for yourself click here. Best words

I believe strongly in policy.” That is amazing. It is amazing, that. I’m in love with it and the idea of it.
“I believe strongly in being smart.” I believe strongly that this can’t be happening right now.
It’s beyond parody. I can’t even make an analogy, and I believe strongly in analogies. Trump has frequently been criticized for his lack of policy specifics. He makes vague promises, sometimes changing those promises to different promises, while promising they’ll be really smart and effective, without giving any specifics. “We’re going to take care of women.” Okay? “I’m going to be so good at the military.” What?
“It will change,” he said. “We will have so much winning if I get elected that you may get bored of winning. Believe me.”
"We are going to start winning bigly, on trade, militarily."
This is who you want to represent the U.S? This is the man that you want dealing with N Korea, Iran or Russia.  This is the man you want choosing the next Supreme Court Justice? 
He hates losing and throws Trumpertantrums when he doesn't get his way. He incites violence at his rallies.  He threatens people to vote for him. He lies almost daily.  His mind changes like the direction of the wind. He insults people left and right. Disabled. Vets. Women. Latinos. Immigrants.  These are not the actions of a president.  Maybe a 10 year old child but definitely not a president.
Finally we have a chance to have a true Conservative in the White House and you (Ts) are blowing it.  How many years have we had to put up with Rhinos? I held my nose for McCain & Romney, but I will not willingly vote for a liberal because he has an (R) next to his name! He has a 63.6 Unfavorable Rate...how on earth will he win with those numbers.
I think for me, one of the worst aspects of Trump is when he lied about his Christianity.  If he doesn't need to ask for forgiveness than he has no idea what it means to be saved. 2 Corinthians...really?
Donald Trump is not a Conservative. Supports PP and Single payer insurance, supported ban on guns and his most recent liberal view is on the transgender bathroom issue.  He will say whatever he has to, to get a vote.  If you want a candidate who tells it like is, then you couldn't be more wrong about Trump.  The only thing Trump will tell you is whatever he thinks you want to hear. 





Tuesday, September 29, 2015

Tug of War...

I know the agony of defeat. I am waving the white flag in surrender.  I give up.  I give in. Life has brought me down to my knees and I can't find the strength to get up. At times I don't even know if I want to.  My feet will no longer hold me steady, my body is broken and I am afraid after so much suffering, so is my spirit.  

Every day I fight from the moment I wake up till my eyes get too heavy and I find my desperate relief in sleep.  I try and smile to hide the tears that are just a moment away from falling.  I can't hold them back, they fall freely down my cheeks, and with them, the frustrations, the sadness, and the hopelessness I feel all too often.  I rage against the bonds holding me back, knowing no matter how hard I try, I cannot remove them.   They are invisible but that doesn't make them any less powerful, debilitating or restrictive.

I look in the mirror and a stranger stares back at me.  I don't know who she is and I have the uncontrollable urge to just close my eyes against the image I see. Her eyes are no longer bright and shining. They are dull and lifeless reflecting the hopelessness she feels. The double chin and shape of her face show the weight gain that is just another casualty that Dysautonomia has layed upon her. Shaking my head, I repeat to myself "This is not me!" all the while knowing in my heart that it is.  You'd think after years of medicine and their side effects, bedrest, and inability to excercise, I would be used to it by now, but no, it still is just as heartbreaking to see.  It's not as shallow as just my appearance though.  It's the knowledge that all the things I used to enjoy are gone to me now.  That is the hardest part.  Not the endless pain, hospitals, tests, medications or dumb doctors that think it's all in your head. (But OMGosh, they are the very worst)

It's the monumental loss.  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 Starts."   In the midst of this, I find myself with no insurance but it sure isn't for lack of trying. It is a nightmare and I will save that for a different post. I used to have an image of me as the "cool" mom.  A place where my boys friends could all hang out.  Playing video games, basketball, pool, whatever they wanted. We lost our truck and house when my husband's work went bankrupt and the company screwed us over bigtime.  Didn't pay insurance premiums even though we paid for them so all these bills were left to us. Paychecks that we never received. We are so far in debt in medical bills that just keep building up day after day.

Family, an amazing support system was the one life line we had left and they stepped up in too many ways to help and support us. It should be the other way around though, we should be helping and supporting them.

I try so hard to deal with the reality that is my life but it feels impossible.  The future looks bleak, my dreams of retiring in a Blue Ridge Mountain cabin relaxing on rocking chairs, looking over the mountains, drift further away with every passing second. The present nearly unbearable and the past, just a memory that makes me long for the old days, the old me.  I've always said that I won't let this beat me, but it is.  It is slowly taking more and more out of me. A game of tug of war. I am grabbing the rope with everything I have left, and the flag is being pulled away from me. My hands are burning, slipping, I am losing my grip, losing this tug-of-war.....

Dysautonomia 1
Jenn                0