Saturday, May 25, 2013

Bittersweet memories

This was a major part of my life before I got PNE.  I majored in voice performance.  After this, I went on to complete a Masters in Vocal Performance.  Just wanted to share.

I just shared this video with my 4 1/2 year old daughter for the first time. She was completely mesmerized that those sounds came out of her mommy's mouth. See, I had a loud mouth even then. Only I was singing high F's like no one's biz-ness.

Wednesday, May 15, 2013

I'm waiting, waiting for you Lord

'Tis so sweet to trust in Jesus....

...yes, it is.  But, my faith is being put to the ultimate test.  I'm at the point where I can't pray, don't know what to do, the only Bible verses I read are those that come through my devotionals (Rest Ministries for the Chronically Ill and Joseph Prince's), and my husband and I just sit downcast in the evenings after our child goes to sleep.  I can't count how many times we've just laid on our faces or shouted our prayers, sobbed and begged God, or just sat still - stone faced.  Hope deferred.  

Proverbs 13:12 says "Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.

My friend Glenna reminded me of this verse.  I don't know what to make of it other than, "YES, GOD, THAT IS ME!  THAT IS US!"

I so want to get the treatment I need.  We have reached the end of the road here with options for this pudendal nerve pain.  I don't know what happened last spring when I had 12 weeks of improvement, steady improvement where I actually considered myself 80% better!  I certainly didn't re-injure myself.  

I am also at the point where pain doctors are tossing me back and forth like a tennis ball, giving me no options.  So -- WE MADE OUR OWN OPTION.  We are pursuing something that could leave me pain free right afterwards.  But, no help from our insurance.  Denied.  

Why don't they want me to get better?  (I ask this like a little child, whining, half-crying)  Kind of like, "why Daddy God haven't you brought the healing yet?  You gave me a prophecy almost 5 years ago!" 

I am so stubborn - but I am determined.  I SAID I AM DETERMINED.  I am totally determined to get better, to get free from pain.  I KNOW IT IS POSSIBLE!!!  God isn't telling me "just do nothing and wait for my miracle."  If told me that, I would just rest in that.  

A while back, my mother and many others told me they kept hearing "rest" when praying for me.  I've physically rested - that is not it - cause it's basically impossible to rest with all this on my mind and heart.  I don't know anymore.  

I am not sure I have asked for prayer on here for a long time.  I haven't even blogged since November.

  1. Please pray that I hear clearly from God as to what to do with my health
  2. Please pray that insurance changes their mind and covers the procedure if that is what I am to do (which I am fairly certain is)
  3. Please pray that in the meantime, we are miraculously sustained.  
Thank you.

Fight PNE.  

Tuesday, November 20, 2012

A long time comin'

There have been so many people that have emailed me.  Too many to count.  I am so grateful that this blog is touching people across the world.  That is such an answer to prayer.  To all those people who have emailed me, and I haven't responded yet, I want to say:

First of all, THANK YOU.  I'm blessed that you reached out to me, whether it be for help and answers about PN/E, to send me a note of encouragement, or just to find out how I'm doing.  I read your email, and I care about you.  However, I have set time apart for myself, my daughter and husband, and for my time with God, seeking Him about what I am to do forward.  That is the only reason why I haven't answered personal emails to my address.  I have to take care of myself and sometimes that means taking a step away from the world of PNE.  I also have been fighting CRPS and neuroplasticity, so it's been tough lately.

But to answer (vaguely - and I apologize) some of the questions:

- Yes, I am much better since my surgery in Austria last October 2011.  I am able to do SO much more!  My walking is much better, almost normal on most days, and sitting IS possible without a cushion or seat, and I can do it for longer periods of time as the months go on.  However, in times of flare up, or whatever the "centrally maintained pain" is --- things get rough.  I won't lie about that.  I don't know what is going on in my brain, spinal cord, pain receptors, central nervous system, peripheral nervous system, pudendal nerve, legs, feet, anything.  I wish I knew... I wish the doctors knew.  The only thing I know I can count on is this:


He is the ONLY one who knows what is going on with me, and what is to come.... and His word is TRUE and that is what I will continue to rely on - that I will be COMPLETELY healed from this -- ALL of this.... and I will live the abundant life that He promised me (and you-- and all those that believe) in His word.  I will NEVER let go of the prophetic word spoken over me when my daughter was only 4 months old and we didn't know what was wrong with me.  "God wants to heal your nervous system."

I will never let that go and God knows it!  He doesn't want me to let go of it!

God is good --

Sometimes I have bad days --- really bad days.... but God is good.  I argue with Him a lot, and yell at Him, but His love never fails.

What a great God we serve.  He forgives me again and again.

And I will not give up and neither should you!

I will be back advocating and answering personal emails (God willing) sooner than later.

Much love to all

Psalm 103

Sunday, August 26, 2012

You cannot hear the notes in my head

Laying your burdens down.
Casting them at the feet of the One who cares for us, cares for us, for us.

Making a way for us.
Opening doors when we can't see through the pain, through the rain, our pain.

See, here I am God.  Here I am and I need you now, need you now, more than ever I need you now.
I'm not here to say what I should, I'm saying I just need You...

Help my family.  Help my child see Your love though yet I suffer.
Help us, Lord, it's been real hard but You are God, You are God.

Set us free, Lord.  Be the medicine that fixes us.
Save us from tomorrow and the pain we've come to anticipate.

Seasons change, another season dawning upon us now.
Why then God must I still go on like this, Lord?

You are loving, You are God, deliver me!  Deliver me, Oh God!

I have been here so many years, time and again but God you have seen me
Through all the pain, please stay the same, and help now, help now.

Let my song come through.  Let my song come through.  Hear my heart sing now
The heart that yearns to praise You again!

God of mercy, be our help, be our refuge, be it all.
We can't do it without you, God, see us crying, we need you now...

Make my melody again.  Hear the praise for You again.

Here I am, God, set me free God.  Release me, release me, release me!!

Set me as a seal upon Your heart.
Set my feet on the Rock of Your love.

Make a way....


Wednesday, July 25, 2012

I just started to write...

There will be a day and it will be soon When I will sit at my piano and have no pain. I will write songs into You, my God and King And I will not even have a memory of suffering. Because in Your mercy You will have delivered me From the pain of the past. You will restore to me more than I could ever imagine. It will seem as a miracle But really it is just your love for me And my desire to serve You fully once again Will finally be fulfilled. Peace is all I ask for today Confirmation. And an end. Thank You Jesus

Monday, July 2, 2012

Psalm 27

The Lord is my light and my salvation; Whom shall I fear? The Lord is the strength of my life; Of whom shall I be afraid? When the wicked came against me To eat up my flesh, My enemies and foes, They stumbled and fell. Though an army may encamp against me, My heart shall not fear; Though war may rise against me, In this I will be confident. One thing I have desired of the Lord, That will I seek: That I may dwell in the house of the Lord All the days of my life, To behold the beauty of the Lord, And to inquire in His temple. For in the time of trouble He shall hide me in His pavilion; In the secret place of His tabernacle He shall hide me; He shall set me high upon a rock. And now my head shall be lifted up above my enemies all around me; Therefore I will offer sacrifices of joy in His tabernacle; I will sing, yes, I will sing praises to the Lord. Hear, O Lord, when I cry with my voice! Have mercy also upon me, and answer me. When You said, “Seek My face,” My heart said to You, “Your face, Lord, I will seek.” Do not hide Your face from me; Do not turn Your servant away in anger; You have been my help; Do not leave me nor forsake me, O God of my salvation. When my father and my mother forsake me, Then the Lord will take care of me. Teach me Your way, O Lord, And lead me in a smooth path, because of my enemies. Do not deliver me to the will of my adversaries; For false witnesses have risen against me, And such as breathe out violence. I would have lost heart, unless I had believed That I would see the goodness of the Lord In the land of the living. Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord! (Psalm 27:1-14 NKJV)

Thursday, June 21, 2012

Ahhh, so this is the post I thought my phone deleted

My faith is really being put to the test. I am experiencing some very "not so good" moments that throw me back into the past. In so many ways, I want to relinquish the past AND future completely and let my thoughts and cares fall only for today, for as the Bible says, today has enough worries of its own. But I fall into the trap of grief, again and again. I know it is a spiritual attack. Why would any force of evil want someone healed, made whole, testify about it, and lead others to the Lord in the process? Do I start throwing out my "get thee behind me, Satan"'s again? Honestly, I'm tired. I got a suggestion to keep doing spiritual warfare and put on my full armor. A Christian would know what that means. So, when my eyes open in the morning, do I say this to the enemy who wants to devour me? I can't. Right now, I am really weak (spiritually.) I am not white-flaggin' it to the devil though. I'm just being honest. I am so spiritually blocked right now though- I need a breakthrough- and that is only something that intercessory prayer can break. The Lord knew and knows my days before I was even formed. He knew I would write this blog post realizing my own inadequacy and my need for an "e-blast" of prayer. So I guess I will do what He says and rest in it. Rest. Today when I was driving home from dropping off my daughter at Vacation Bible School- I thought, "I would like to volunteer, with my daughter, to sing and talk and pray with young children who are in more pain than I could ever be." I was getting a thought for an avenue of ministry. Almost immediately, the enemy comes in with "but you can't do that, because you'll never be well enough for that." Now, you can see why I need a total mind overhaul. What happened to my faith? I have it somewhere- right? God- give me the grace and mercy that I need to continue to believe, that even despite these trials- that YOUR Word promises my complete health! Revive me, Holy Spirit, and send Your fire to burn with fervor again. Show me how to walk in Your Word. Show me how to TALK in Your Word. Show me that You are THAT YOU ARE!!!! Fight my battle, Jesus! Give me the faith again to TRUST You completely!!! You are ALL power, Lord! You will deliver-- IF-- I trust You. And, in your mercy, guide the hands of my surgeon, Prof Aszmann, as he operates on my dear friend tomorrow. You PROMISED us, God! Thank you, Jesus. I need a whole lotta sermon from Dr Herb Jones right now. I need some spiritual backhands!!! People speak it to me, I am open to what the Lord wants to say through you! Ughhhh- God just set me free from this. My ice packs burning in hell is long overdue.