Friday, April 17, 2015

My Periodic Paralysis Prayer

After sharing that poem another HKPP patient wrote, I have decided I'd like to also post my own that I just happened to write down on Sunday morning as a prayer to God.  It is very free form - I never was good at poetry, but the heart is there.  One song that comes to my mind over and over again is "Why Should I Worry." You'll recognize it in the very last line.

Here I am again.
I can't even stand.
In tears because I'm so weak.

I fight for my next breath
And feebly open my eyes.
My heart is racing fast as tremors shake my body
And I struggle to even speak.

But you hear the cry of my heart, LORD.
You know I wanted to be there.
It's not news to you that I wish I could do - 
Everything. All the time. Faithfully.

Yet, I am so weak.
Funny thing is that's what you seek.

So take my weakness and show your strength.
Help me open my eyes, and dry my tears
Hold my feeble, trembling hand.
Calm my heart and soothe my mind.

As I remember that
When sickness comes, and my body's in pain, 
All I have to do is call on Your name.

A Day in the Life of a Periodic Paralysis Patient


It's that time of year again that I love but absolutely hate at the same time. How refreshing to hear the birds singing and see the first buds appear on the trees... I am even getting into gardening for the first time and rejoicing over my little herb garden!

But any changes in weather are always a tough time for a HKPP patient. So far, this week alone, I have had three episodes. One caused me to miss church Sunday morning. The other came on right during the middle of our church's midweek service. By God's grace I never had to make the ambulance ride mentioned in the poem below, but my sister has.

I am committed more than ever to discover more about this disease, raise awareness, and find some answers. For some reason, Diet Coke seems to have helped some patients ward off attacks. Sometimes it works for me. I was on Acetazolamide for quite some time when I was first diagnosed, but the cost of the medication grew out of control, and I surprisingly started reacting negatively to it - to the point where it was triggering attacks.

I am on the path of looking to find something natural that may work better. I want to find answers, and I want to help people and the families of those who suffer from this disease. My husband is a champ - takes better care of me than anyone ever could without ever once complaining, but with a smile on his face and love in his heart.

So I share these posts not for you to say, "oh, poor Anna"... not for sympathy. But for more awareness, more understanding, and hopefully one day, more answers.

Here's is a poem that I found in my most recent research. You can find it directly here. She writes so well of exactly how one feels prior to being diagnosed, and there even doctors who are yet unaware of the disease. She expresses their sentiments perfectly, "The patient is faking, playing possom I see... Potassium is low, but you will be fine."

A Day in the Life of a Periodic Paralysis Patient

The 911 call placed, you feel like you're dreaming,
You’re not, from afar you can hear sirens screaming;

The ambulance ride, your body’s not moving,
They wonder aloud, whoa, she's not improving;

Respiratory muscles won’t respond to a breath,
You know once again that you’re so close to death;

Whizzed in on a gurney, it’s all moving fast,
What? You’re parked in a hallway, suddenly bypassed;

How are you this evening? Then give you that look,
The oxygen, sensors and wires they unhook;

They make you feel guilty, as if you are faking,
You’re frightened, can’t breathe, and everything’s aching;

The ER visits, the doctors, the begging and pleading,
You would not desert me if I were here bleeding;

Weakness, paralysis and cognitive decline,
Inverted T-waves, arrhythmias are fine;

The patient is faking, playing possum I see,
With his hammer he can't get a jerk from my knee;

Agonizing pain, it strikes with a flash,
The doctor shrugs shoulders, departs in a dash;

Positive tests, plus symptoms and signs,
Potassium is low, but you will be fine.

~ Victoria Cecil-Shover
Solon, Iowa

Tuesday, April 7, 2015

the old paths

Have you ever found yourself in a spot where things just aren't like they used to be?  Things could be ok, but it seems like there's just something missing.  It doesn't mean that you're not reading your Bible or going to church or ministering to others... something is just off.

This year, I read the book "Today We Are Rich" by Tim Sanders at the recommendation of a friend and coworker of mine.  What a GOOD book.  It was written by a Christian who was raised by his godly grandmother.  The premise of the book is not how to get rich quick or even slow... it's about what true riches really are. Tim had what he called some "sideways" years after he graduated from high school and left his grandmother's.  When he went back to his grandmother years later, ready for a change, she asked him the following:

"What are you not doing in these days that you were doing then?"

I began re-reading the book this week, and that question stuck out to me yet again.  Sands post, "The Power of Music" really has been on my mind a lot lately.  It has taken me back to those days of Bible College when everyday we were learning and growing and drawing closer to God.  We sat down and played our guitars at any given time of day and had a worship session.  And the worship wasn't just limited to then - we were always playing music when setting up for meals or singing Victorious Valley songs at the top of our lungs in beautiful harmonies while cleaning up dinner afterwards.

As I was having my devotions last night, my mind wandered back to those times... and what I was doing then that I am not doing now.  It's easy to say that we were in Bible College, and those were the best days ever. The fellowship was phenomenal.  We were always learning.  The spirit of worship was so sincere.

But why let it be days gone by?  Why not bring that very spirit into the heart of our homes?  Why not implement those years of training and blessing and our routine from then into our daily lives?

So last night, I pulled out the dear old guitar that Leam L. Leam gave me, and I started singing those songs... "Field of Grace," "Paid in Full," and "Father to the Fatherless."  Why not just pull out my guitar and sing to Jesus in my very own home at any given time of day... just because.

I realized that there were other things that worked then, that would still work if I would just implement them.

What about my routine?  I got up every day at the same time and curled up in a comfy chair and read the Word.  Every evening, I tried to head to bed a little earlier than lights out and spent time journaling and reading the Word.  And every evening, we would fall asleep to some wonderful CD like "Hear My Prayer."  Every day was filled with God's Word and His music.

I have to say that though I would not really call my years after Bible College "sideways years," all the change that happened so frequently got me out of good routines and practices that really did work.  I came to the place where life was so crazy that no kind of routine existed in my life - unless you count routine randomness as routine.

But I'm so grateful that God has brought these things back to my mind.  I'm grateful that He's helping me find not just a routine to get things done, but to create a wonderful, glorious Spirit filled home.

I've struggled since quitting my full time job to find a flow that works well for me.  There is a ton of work to be done on our home still, and we are getting more and more opportunities for ministry which is awesome. One day, I look forward to being a mother.  But... going back to what worked for me then will help me find the rhythm that will work now.

In the words of Tim Sanders, "My mind swirled with excitement... I knew how to do this. I had simply allowed the uncertainties of life to get in the way of doing what I needed to do."

So after singing those good old songs at the top of my lungs for an hour or so last night, I pulled out "Hear My Prayer," turned on my wonderful little fan, and fell asleep with my mind set on Christ and looking forward to returning to some of these old paths.