Friday, April 17, 2015
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:
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.
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.
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.
Monday, March 30, 2015
victory in the daily walk
It is the close of the first quarter of the year. It is also the week prior to Easter - where we celebrate Christ's resurrection - His triumph over death.. newness of life. Victory.
I love weeks like this. It's like the week after Christmas and directly before New Years... only you've had the opportunity to live out some of the goals that you've been working towards for the past three months.
This year, I sat down and looked at aspects of my life such as spiritual, marital, financial, home, ministry,physical, career... you get the idea. I wrote generalities of how I wanted to improve and then developed those into specific goals that were measurable. I also sat down with my husband and got his input on my ideas as well as what he would like to see happen in our home this year.
It was fun. I love the planning process. I love dreaming.
Reality though? Well, we all know that reality is a different thing entirely. Some years I actually gave up on the idea of goals or resolutions because I KNEW the reality would be different than the dream, and I would just get discouraged and beat myself up about not accomplishing the goal.
But I've been learning something this year, and that's to go somewhere you've never been, you have to do things you've never done. To grow, you have to set goals. You have to work towards something.
And so, this year, I set out to grow - in every aspect of my life.
Here's an example of how I broke down those goals.
Spiritually, I wanted to become a more gracious, wise woman who abides in Christ and His love.
But, to actually grow in the area, I had to set some specific goals to help me get there. I chose to do the following:
1) Read 33 books of the Bible. (I've tried the whole Bible in one year before and ALWAYS get behind and discouraged, and NEVER accomplish it. This year I decided I could read any 33 books in any order - I'd just write them down as I went and it would be PROGRESS)
2) Read "One Thousand Gifts" (A book highly recommended by quite a few very good friends.)
3) Listen to one spiritual podcast each day (either a sermon or devotion)
Now, doing those things wouldn't make me automatically the woman I want to become, but they would put me in a place conducive to growth. But growth doesn't occur just because you've set some goals and your working towards them. There has to be an evaluation of how it's going.
I have decided that I will review my goals quarterly. Where I have done well, I will set new goals to grow more. Where I have slacked off, I will reevaluate and recommit myself to a goal that is achievable.
It's exciting. It's new. It's learning that progress does not mean perfection. I don't have to be perfect for God to love me or use me. But I don't want to stagnate in my growth either. Reality doesn't have to mean perfection or failure. Reality just needs to be progress.
So today and tomorrow, I'll be setting aside some time to do this re-evaluation process, and this coming Easter Sunday I will be rejoicing not just in Christ's victory on the cross, but that His victory gives me the power to have victory in my every day walk.
I love weeks like this. It's like the week after Christmas and directly before New Years... only you've had the opportunity to live out some of the goals that you've been working towards for the past three months.
This year, I sat down and looked at aspects of my life such as spiritual, marital, financial, home, ministry,physical, career... you get the idea. I wrote generalities of how I wanted to improve and then developed those into specific goals that were measurable. I also sat down with my husband and got his input on my ideas as well as what he would like to see happen in our home this year.
It was fun. I love the planning process. I love dreaming.
Reality though? Well, we all know that reality is a different thing entirely. Some years I actually gave up on the idea of goals or resolutions because I KNEW the reality would be different than the dream, and I would just get discouraged and beat myself up about not accomplishing the goal.
But I've been learning something this year, and that's to go somewhere you've never been, you have to do things you've never done. To grow, you have to set goals. You have to work towards something.
And so, this year, I set out to grow - in every aspect of my life.
Here's an example of how I broke down those goals.
Spiritually, I wanted to become a more gracious, wise woman who abides in Christ and His love.
But, to actually grow in the area, I had to set some specific goals to help me get there. I chose to do the following:
1) Read 33 books of the Bible. (I've tried the whole Bible in one year before and ALWAYS get behind and discouraged, and NEVER accomplish it. This year I decided I could read any 33 books in any order - I'd just write them down as I went and it would be PROGRESS)
2) Read "One Thousand Gifts" (A book highly recommended by quite a few very good friends.)
3) Listen to one spiritual podcast each day (either a sermon or devotion)
Now, doing those things wouldn't make me automatically the woman I want to become, but they would put me in a place conducive to growth. But growth doesn't occur just because you've set some goals and your working towards them. There has to be an evaluation of how it's going.
I have decided that I will review my goals quarterly. Where I have done well, I will set new goals to grow more. Where I have slacked off, I will reevaluate and recommit myself to a goal that is achievable.
It's exciting. It's new. It's learning that progress does not mean perfection. I don't have to be perfect for God to love me or use me. But I don't want to stagnate in my growth either. Reality doesn't have to mean perfection or failure. Reality just needs to be progress.
So today and tomorrow, I'll be setting aside some time to do this re-evaluation process, and this coming Easter Sunday I will be rejoicing not just in Christ's victory on the cross, but that His victory gives me the power to have victory in my every day walk.
That the God of our Lord Jesus Christ, the Father of glory, may give unto you the spirit of wisdom and revelation in the knowledge of him: The eyes of your understanding being enlightened; that ye may know what is the hope of his calling, and what the riches of the glory of his inheritance in the saints, And what is the exceeding greatness of his power to us-ward who believe, according to the working of his mighty power, Which he wrought in Christ, when he raised him from the dead, and set him at his own right hand in the heavenly places, Far above all principality, and power, and might, and dominion, and every name that is named, not only in this world, but also in that which is to come:And hath put all things under his feet, and gave him to be the head over all things to the church, Which is his body, the fulness of him that filleth all in all. Ephesians 1:17-23
So how about you? How do you work on your growth in areas of your life? Have you found a system that works well for you? Do you have some favorite verses you'd like to share? I'd love to hear.
Friday, December 26, 2014
2014 Reflections
Inspired by Leah over at Proverbs 31, I've decided to reflect on some blessings from this past year.
1. I celebrated my first wedding anniversary with the man I love at the very place where we honeymooned.
2. My man whisked me off for a Valentine's weekend to remember for a lifetime. We spent a day and night in New Jersey with a beautiful view of the NYC skyline. The following day, we went to my first ever Jim Brickman concert. He was my inspiration to be a pianist, so it was super awesome to be able to see him perform in person.
3. This entire year, God has worked in our hearts to show us the calling He has for us.
1. I celebrated my first wedding anniversary with the man I love at the very place where we honeymooned.
2. My man whisked me off for a Valentine's weekend to remember for a lifetime. We spent a day and night in New Jersey with a beautiful view of the NYC skyline. The following day, we went to my first ever Jim Brickman concert. He was my inspiration to be a pianist, so it was super awesome to be able to see him perform in person.
3. This entire year, God has worked in our hearts to show us the calling He has for us.
- Mike spent the summer working at the golf course to see if he would pursue his dream as a golf pro. Though he passed his playing test in August on the first try (unheard of), something was still missing. He knew what that was when Pastor Gary started preaching a series on Jonah the first time we visited back at Nottingham. Mike (re)surrendered to be a preacher, and was also given back his position at his previous job with the understanding that he will eventually move to full time ministry.
- I struggled with the leading of God to quit my full time job as an executive assistant in the corporate world. Even though all I've ever wanted was to be a wife, mom, and homemaker, the pull of the world was strong, and I did not want to leave the financial security and self sufficiency of where I was at to become a housewife. I struggled with what others would think of me, and if we could make ends meet, but I knew it was God's leading. God is so good. By His grace, I resigned, and now have the wonderful opportunity to serve more in ministry and also return to teaching piano and tutoring.
4. One of the most trying years of our lives (September '13- September '14), is now over. God taught us so much about Him, strengthened our faith and beliefs, and has shown us where He wants us. We have a regular home church and ministries which include the mission.
5. We are experiencing what reconciliation of relationships in Christ are like. Wow - definitely a work only He can do! When misunderstandings and hurt enter the picture, it's easy to think that "it's over," but in Christ, all things can be made new. It's amazing to actually experience reconciliation rather than holding onto bitterness and hurt for the rest of our lives.
6. Christ is teaching me contentment - something I have always struggled with.
7. We were blessed to be part of both Mike's sister's wedding and my sister's wedding. Beautiful celebrations of new families that God has established.
8. "The Best Yes" was released, read, and life changing for me.
9. Mike and I have begun daily devotions together following every dinner. We clear the table, grab some dessert (sometimes) and hot tea for me, then read our devotional, talk about it, and pray. It's drawn us so much closer, and I look forward to it every day.
10. Several songs have been especially meaningful to me this year, and I am so thankful for the truths in them: Never Once, Lord, I Need You, Cornerstone, and Stronger.
Thursday, December 25, 2014
Tuesday, December 2, 2014
"something in my heart just keeps on yearning"
"Has there ever been a time in your life where you felt closer to the Lord than you are right now? You were more at peace... had more joy?"
Chances are, if you've been walking with the Lord for some time, you've likely heard this question asked during a sermon at your church or on a podcast maybe. The question is posed to get people thinking about snapping out of the rut, the routine, the status quo... and really focus on where their personal relationship is with God. And I'm pretty sure that you'll hear one or two things about joy this coming month. It IS Christmastime.
I've heard the question countless times. I try to give it sincere thought when it is posed, and take necessary measures according to whatever the answer may be.
But over the past couple months, I have found a hunger growing in my soul for more. You see, it's not that I haven't been walking with God. I have been. I've been reading my Bible, praying, going to church... the list goes on - you know how it is. Things haven't been bad. They've been good. But, I'm craving more.
There is a stirring in my soul for that authenticity... for that moment by moment, in step, life flow with God. As John puts it, the abiding in Christ. Jesus left us specific instructions for FULL joy, "Abide in me." If we want true joy not only this Christmas season, but year round - that's where it's got to come from.
It's time to take life by the reins... time to reflect... time to pray... It's time for the tough stuff...time to get serious about sin - to lay aside some weights and what so easily besets us... looking unto Jesus, and thus experiencing that joy.
Are you in?
Chances are, if you've been walking with the Lord for some time, you've likely heard this question asked during a sermon at your church or on a podcast maybe. The question is posed to get people thinking about snapping out of the rut, the routine, the status quo... and really focus on where their personal relationship is with God. And I'm pretty sure that you'll hear one or two things about joy this coming month. It IS Christmastime.
I've heard the question countless times. I try to give it sincere thought when it is posed, and take necessary measures according to whatever the answer may be.
But over the past couple months, I have found a hunger growing in my soul for more. You see, it's not that I haven't been walking with God. I have been. I've been reading my Bible, praying, going to church... the list goes on - you know how it is. Things haven't been bad. They've been good. But, I'm craving more.
There is a stirring in my soul for that authenticity... for that moment by moment, in step, life flow with God. As John puts it, the abiding in Christ. Jesus left us specific instructions for FULL joy, "Abide in me." If we want true joy not only this Christmas season, but year round - that's where it's got to come from.
It's time to take life by the reins... time to reflect... time to pray... It's time for the tough stuff...time to get serious about sin - to lay aside some weights and what so easily besets us... looking unto Jesus, and thus experiencing that joy.
Are you in?
Saturday, October 18, 2014
dreams really do come true!
If you've known me for a while, you may know that deep in my heart I have always wanted to be a wife and mom that loved Jesus with all she was and lived like it. I wanted to be very involved in church and ministry. I love coming alongside others to encourage or worship.
When I first got to know Mike, it was at a Bible Study that he was leading. His study was from 1 John 1. I may have sat through preaching all my life and heard countless sermons and even some devotions from that passage, but never had I heard it with the clarity and conviction that he gave that day. It stuck with me every day... how we have to keep the window of our souls clean to let God's light shine through us... and when we let the window get clouded with sin instead, we hide God's light. There was more to it, but the point I am making was that the Bible Study made a significant impact on me.
But it wasn't just the Bible Study I couldn't stop thinking about, it was the guy that gave it! I didn't know guys like him existed anymore! I mean he was a LOT of fun and rather crazy to be honest, but he lived for God too. What?!
Well, you likely know our story from there, but if you want to read about it, you can here.
I remember one Sunday afternoon when Mike and I were dating. I had been struggling to resolve some things in my mind. See, at one point just several years earlier, I thought that God may be leading me into full time service - as in, not working a full time job in the everyday professional world, but to be working everyday in the church world. Life happened though, and God had not brought me to that point. Yet, that desire was still there, and I knew that soon I would be making a rather large decision in my life - who I was going to marry!
Mike and I had talked about serving God. I had found out that years earlier (about the same time that I began to sense the call of God on my life), he had surrendered to preach. Yet, as life went along, he did not feel that was what he was supposed to do anymore. When he told me this, my heart skipped a beat, and I think even in that moment I knew that God was going to do much more with our story.
Yet as I approached the time where I knew the question was going to come about marriage, I needed to have peace in my heart that I was absolutely, without a doubt, taking the correct path in life. I will not bore you with all of those details, but I can tell you that as I prayed and read the Word that Sunday, God gave me 100% assurance and peace that if Mike were to ask me to marry him, my answer to him should be yes.
The time came for Mike to talk to my dad about marriage... and my dad's answer to him was, "I always knew that Anna was supposed to marry a preacher, and that's how we raised her. But, I've been praying about it, and God just has given me peace that she's supposed to marry you. I really don't understand it, but yes."
Well to make a long story short, Mike and I were married with our parents blessing. The first year and a half of our marriage have not been easy. Many struggles have come our way, but we have done our best to keep our eyes on Jesus and have faith when we didn't feel like it. My health has proven to be a huge struggle. Mike was not happy with his job even when he had the opportunity to follow his dream at a golf course! All of this was God working. Through some messages on Jonah from our Pastor and many, many other little things, my husband (re)surrendered to preach and serve the LORD full-time with his life.
Now, about that photo you see up there... well, the mission is one of my very favorite places to be. I served there on Saturday nights for about 5 years in a row faithfully - while I was still in college, before I moved to California and after, and even before I met my husband.
But Thursday night found us driving to the mission, and as we were about five minutes away, my heart just leaped in anticipation and happiness as it felt like for the first time in forever, I was finally just about "home." Everything in my life had been leading to this moment, and there we were.
So before we ever jumped out of the car to walk into the mission, I had to capture this photo - the beginning of my "home". Mike preached a powerful message on salvation. He led the song service as I played the piano. And I sang a couple of the guys favorite songs.
I don't really know how to wrap up this story... because it is really just the beginning.
But maybe the best way is to end with a beginning... the lyrics to the song that was sung directly before we said our marriage vows.
Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name
The sun comes up
It's a new day dawning
It's time to sing Your song again
Whatever may pass
And whatever lies before me
Let me be singing
When the evening comes
Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name
You're rich in love
And You're slow to anger
Your name is great
And Your heart is kind
For all Your goodness
I will keep on singing
Ten thousand reasons
For my heart to find
Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name
Bless You Lord
And on that day
When my strength is failing
The end draws near
And my time has come
Still my soul will
Sing Your praise unending
Ten thousand years
And then forevermore
Forevermore
Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name
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