Where No One Stands Alone

1 08 2015

IMG_3703The past two weeks have been a set back with a total of four “seizure events” and a number of what my doctor says are similar to a petit mal where I zone out and cant respond. My brain decides breathing is the least of it’s priorities and this puts responsibility on my caregivers to keep me breathing by slapping my face, calling to me ect.

For this reason Olaf the Oxygen Tank has joined the ranks. His presence is a great comfort to my husband and my mom. And I sorta like him too. Except he makes me miss Eddie.

Today this song by Thomas Mosie Lister was playing. I just like it and thought I’d share it with you.

Once I stood in the night with my head bowed low
In the darkness as black as the sea
And my heart was afraid and I cried,
Oh Lord, don’t hide your face from me.

Hold my hand all the way, every hour, every day
From here to the great unknown
Take my hand, let me stand
Where no one stands alone.

Like a king, I may live in a palace so tall
With great riches to call my own
But I don’t know a thing in this whole wide world
That’s worse than being alone.

Hold my hand all the way, every hour, every day
From here to the great unknown
Take my hand, let me stand
Where no one stands alone…

I’m so blessed! I’ve got my God, who gave me my one-in-a-million husband, amazing parents, my siblings who keep my life fun and interesting and my caring church. And a doctor who feels like family.

I am not alone!

Lab Results

9 07 2015

“So how’s your lymes?” Is a question I’m often asked.

First of all, it’s NOT lymes. The correct term is LYME disease. Saying lymes is as if you were to say, “how’s your cancers?”

[Thanks for indulging my rant.]

This is a hard question to answer as I technically have two diseases that don’t necessarily get along.

I normally tell people that I’ve been diagnosed with Dystonia, whether it’s genetic or caused by the brain trauma from nuero-lyme, we do not know.

Some doctors are convinced it is genetic, others say it was lyme induced. I myself am not certain. I tend to lean towards it being a secondary condition of lyme, however, I do have some distant relatives with genetic Dystonia and so I cannot rule that out. Genetic testing would solve the puzzle, but we lack the funds for such a costly endeavor and it really wouldn’t change anything about how we deal with it.

Recently I had a full panel of labs done. Every lyme test, all my levels and there must have been a few extras cause they drew vial after vial of blood till I almost fainted and I haven’t done that in years!

The results? Spectacular! I was clean of every infection I had dealt with, save two minor ones.

There is lyme of course, and then there is Babesia, Bartonella, Ehrlichia, Anaplasma, and Mycoplasma. In my fighting years, I’ve managed to land the company. But now I’m just working to clear out the remnants of infection.

My larger challenge is the debris left behind in the attacks. There are some things that will never be the same. My brain has been left raw and is subject to over-stimulation. Simple things like the long aisles full of decisions at the grocery store, a loud noise, or a new place, are all things I’m learning to work with and to counteract the effect these situations can have on my brain.

I’ve been working with a nuero-psychologist to aide me in this, as well as symptom management for Dystonia and I’m so thankful for everything I’ve learned. I cannot prevent attacks, this is a physical disease and not emotional or mental, but I’m learning how to work with my body to keep things from escalating. I’ve gained more confidence in myself which allows me to stay out in public longer even if my muscles are jerking or my neck has gone rigid.

It does get a bit confusing at times, wondering whether to blame Dystonia or lyme after-effects for different symptoms or things that come up, but I have a good team and we are sorting through it, one challenge at a time.

How Great Thou Art

8 05 2015

this post was written on Wednesday, but I didn’t have a chance to publish it until now.

A week ago today my cousin Eddie was freed from his earthly body and went to his heavenly home. I’m glad he no longer needs to struggle for breath, but oh it hurts that he is gone.

*taken about a year and a half ago*

*taken about a year and a half ago*

About three weeks ago, Joe & I stopped in for a ten minute visit on our way home from a wedding. I knew it would be the last time I’d see him. We’ve been close. There was this connection we had since we both faced diseases that limited our physical abilities. We understood each other without a lot of words and he was a tremendous role model to me.

“My time of fighting is over,” he told me that day. “But you must continue on.”

I didn’t want to hear those words. I wanted to cling to his hand and keep him there with us. He was too young, much too loved and needed by all of us in his family to die! Who would be our cheerleader? He was so strong. We needed to fight together!

The morning before he passed away I received a very special goodbye text from him. “My life is coming to a close. I want to thank you for the encouragement in helping me fight. Prepare to meet me where I am going.”

When Joe woke me Thursday morning and told me Eddie had gone, my mind didn’t process it at first and then reality hit. Joe held me as I cried. “You have to stay calm,” he said, “so you can go to the funeral.”

I had physical therapy that day and we made it about twenty minutes before I had triggered and the session had to be canceled for the day.

I didn’t want to enter the viewing room, I tried to linger at the memory table looking over photos of bygone years, remembering happy times. But time does not stand still and when I saw him lying there in his casket, truly gone, the grief that hit was so intense I wasn’t prepared for it.

I sat there during the funeral and looked around, noticing how even my strong, brave uncles had reddened eyes and did not keep from showing their emotion. I watched the line of funeral-goers pass through the front of the church for the final viewing, so many friends he had and so many lives he had touched in his thirty years on this earth. I saw my cousins file past with their tears flowing. He was everyone’s favorite and all forty-two cousins were there.


*this was the first time we had all been together in seven years. we range in age from the lower forties to one year*

It was almost my turn and part of me wanted to stay sitting so it wouldn’t be real, but Joe helped me to my feet and I walked jerkily up to the casket. It was real.

It’s just his body, he’s in heaven and so much happier! I know all this; but, we’re still here.

I want to ask “Why? Why Eddie? Why did he have to die the terrible, long, suffocating death, typical of the cystic fibrosis disease?” But cystic fibrosis, his response to it and his unique personality helped to make Eddie into the man he was, someone who gave so much to others. Someone worth grieving for. I don’t wish him back…

…I think…

It’s just, I miss him.

Last night I couldn’t sleep and so Joe played some hymns on his phone. The first one, How Great Thou Art, spoke to me. The descriptions of how great God is gave me a sense of peace and comfort. And I knew again that the God who made the world and stars, who sacrificed His Son for my sin, that great God knows what I’m feeling. He knows the grief of my aunt & uncle and cousins. He sustained Eddie, and He will sustain us.

O Lord my God, When I in awesome wonder,
Consider all the worlds Thy Hands have made;
I see the stars, I hear the rolling thunder,
Thy power throughout the universe displayed.

When through the woods, and forest glades I wander,
And hear the birds sing sweetly in the trees.
When I look down, from lofty mountain grandeur
And see the brook, and feel the gentle breeze.

And when I think, that God, His Son not sparing;
Sent Him to die, I scarce can take it in;
That on the Cross, my burden gladly bearing,
He bled and died to take away my sin.

When Christ shall come, with shout of acclamation,
And take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration,
And then proclaim: “My God, how great Thou art!”

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.

Stephanie J. Leinbach

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