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Diagnosis

06 Feb

We have the results of the biopsy and the path we had been on for the diagnosis has been confirmed so we are now ready to let everyone know what is going on.  My doctor, Dr. Gilkeson, has been so wonderful through out this process and he wanted to be as close to 100% sure before he said this is what I have.  So enough delay…. I have a rare connective tissue disorder called polymyositis.  It affects statistically 1 in 100,000 people.   My lay person’s explanation is that my immune system is attacking my skeletal muscles.  I also have been diagnosed with interstitial lung disease caused by the autoantibody antiJo-1.  My understanding again is that my own body is attacking itself.   If you would like to read more about these I would recommend these two links ….  for polymyositis –   http://www.mayoclinic.com/health/polymyositis/DS00334 and for interstitial lung disease – http://www.mayoclinic.com/health/interstitial-lung-disease/ds00592

How am I feeling right now….

I feel that in order to show God work, I want to be as transparent with everything going on as possible and we can all marvel that the way I know He is going to work in my body.  So here is how polymyositis and interstitial lung disease are affecting my body right now on this Saturday morning.  My entire body feels as if I went to the gym for the first time in like a year and worked out like a maniac and that awful way that you feel the next day – that sums up the way I feel all day long.  Also, it is difficult for me to walk and I call what I do more of a waddle 😉  At some points it hurts even to just move my fingers and toes.  It is encompassing my entire body and at some points it is often extremely painful like muscles could be tearing.  My lungs feel as if I have a bad chest cold, even though I have no chest congestion, right down the center of my lungs it is like they are burning when I take a breath.  At times it is difficult to take a deep breath.  I am also having some difficulty swallowing, but that comes and goes.  I have good days and I have bad days.

Treatment and Prognosis

So where do we go from here and how do you treat something like this?  Well, I have been on steroids now for about a month.  These steroids not only help me not feel the pain (I do believe that if I were to feel the full force of this pain, I would be immobile and miserable) and they are bringing down the inflammation in my body.  I am also taking an immune system suppressant.  We started this about a week and a half ago and what this does is shut off my immune system so that it quits attacking my lungs and muscles.  Dr. Gilkeson did a blood test to see if I had the make up genetically to handle the immune suppressant that was best for my lungs and praise the Lord I am.  So he picked the immune suppressant that my lungs should respond the best to, but it will also be treating my muscles as well.  Dr. Gilkeson feels that I will not be one of the people with this that has flair ups, but I will probably have to always be dealing with this and medicated.  However, he said that God can do great things and can change that so we are going to pray for that.  We are going to continue with the steroids while we get the immune suppressant up enough to where this is more under control and I am in less pain and then the goal is for me to be off of the steroid completely!!   So I am also going to ask that we pray for that to happen quickly.  I am going to have to have blood work done regularly to monitor my body, but we are going to increase my immune suppressant for the next bit and wait and watch the Lord use medical technology to get this under control.  There is no cure for this, but it is something that we can manage.  Dr. Gilkeson is confident that we (God, him, me, family and friends praying – so that includes you!) will get me back to being able to do normal everyday mommy and wife duties 🙂  And Dr. Gilkeson has no doubts that we can return to Costa Rica once we get my medication figured out.  🙂  We are not sure at a time frame right now, but my personal goal is the end of March.  This is slowing us onto the field, but it will not stop us!!!

My Thoughts

I am very excited that God has granted people a glimpse into His wisdom/creation and into the human body enough to have such wonderful medical technology and treatments that we were able to get to the bottom of what is going on and there is a way to control this.  My life’s goal is to shine where ever the Lord chooses to put me and although I thought I would not be back in the US for over a year, here I am and I am trying to shine His love and grace and hope and security to everyone that I run into here in Charleston.  “Let your light shine before men that they may see your good works and glorify your Father in Heaven.”  Matthew 5:16.  For those of you that know how much I love music I have always loved the Newsboys song Shine – the chorus is  –

shine
make ´em wonder what you´ve got
make ´em wish that they were not
on the outside looking bored
shine
let it shine before all men
let´em see good works, and then
let ´em glorify the Lord

My prayer is that God would use this disease and His grace in me to shine in such a way that others are drawn closer to Him and that even someone might even be saved!!  I am not down and out and questioning “Why me?”  I know why me….God wanted to use me and He has given us His words that say that “He works all things for the good of those who love Him, who have been called according to His purpose.”  Romans 8:28.  Not some things, not positive things, not easy things, but ALL things.  I am honored that He is going to use me and this disease however He sees fit and I will only do my best to bring Him all of the praise, glory and honor for each season of this disease.  I am not perfect, but with God’s grace covering me, I can shine His strength, faith, hope and love to others.  So I implore that you join me in this prayer.

If anyone has any questions, I would love to answer them.   For those of you that know me well, I am open to questions about anything at all and I will be honest and transparent in my answers.

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12 Comments

Posted by on February 6, 2010 in Uncategorized

 

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12 responses to “Diagnosis

  1. Cathy

    February 6, 2010 at 11:39 am

    Courtnay, Just want to say…you have been “shining” throughout this entire situation. You are an inspiration to me and you and your family are in my prayers constantly. I love you my sister, Cathy

     
    • courtenayfolk

      February 6, 2010 at 11:59 am

      Thank you sweet sister and friend! It is only God and His grace!! To Him be the glory!!!

       
  2. Veronica Arthur

    February 6, 2010 at 12:16 pm

    Wow, Courtenay! You really inspire me with your amazing faith and trust in the Lord! You remind me of someone named Job. “Though he slay me yet will I trust in Him.” Job 13:15 Keep on letting your light shine girlie! You are preacious to the Lord! I love you my friend!~Veronica

    “Tell God you are ready to be offered, and God will prove Himself to be all you ever dreamed He would be.” Oswald Chambers

     
  3. Beverly Timmons

    February 6, 2010 at 12:26 pm

    Hi Courtenay – Your witness is true! Thank you for holding faithful and holding up the truth about Christ through this difficult situation. We are praying for your healing, but we also know that God is sovereign and we thank Him for using you in this situation. You are a true light to your family and to the world Courtenay and we praise God for you. I think back on the Son Servant Mission trips that you and Cami took and the Youth Serve events and when you were staff and I marvel at how God has grabbed your heart and grown it into a strong vessel for Him. Glory to God…we love you Courtenay..keep us posted on how we can pray for you.. love Beverly Timmons

     
  4. Brad Porter

    February 6, 2010 at 1:38 pm

    We have been and will continue to pray for you daily. You guys have a very special place in our hearts and lives. Please keep us informed as to your progress. Hope to see you soon.

    Love ya,
    Brad and Donna Porter

     
  5. Keith Shorter

    February 6, 2010 at 4:31 pm

    The Mt Airy family is praying for you. As you said already, God is at work. I’m so thankful for your positive outlook in all of this.

     
  6. Garry Morrison

    February 6, 2010 at 6:50 pm

    Iglesia Bautista Hispana La Roca family have been praying for you. May the Lord continue to give you peace and encouragement.
    Job 1:22 In all this Job sinned not, nor charged God foolishly. {charged…: or, attributed folly to God}.

     
  7. ann neal phillips

    February 6, 2010 at 8:04 pm

    Praying for you and your family.You are SHINING IN GOD WAY TO show us how to help others and to pray for one another.

     
  8. Kim

    February 8, 2010 at 12:58 pm

    Wow, Court! Thanks for all the information. I have been relying on Momma (who I know is in contact with your mom all the time) for updates because I know you are probably getting a lot of calls. I’m sorry to hear of this diagnosis but I know that God is the Healer of all things and that He can not only use this illness for the good of the Kingdom, but He can also provide healing in His time. We are praying for you at home and with our church family and we know that good things will come from this. We love you good and faithful servant!

     
  9. Kathy Elrod

    February 15, 2010 at 12:40 am

    Courtenay, I continue to pray for you! I am so thankful for your positive outlook on all of this. I know God is going to use this and you to bring glory to Himself!!! I will continue to pray! Take good care of yourself! I know you can’t wait to see Jacob and the kids! Love you!

     
  10. Janet Smith

    February 15, 2010 at 6:47 pm

    Precious Little Sis Court-History repeats itself, sort of. We came home on early furlough our first term in Brazil for some health issues of mine that were not as serious as yours, but I want to tell you to be very tender and patient w/ your parents as they may find it very hard to accept that you intend to return to Costa Rica. I may be wrong, but my own father was furious that we still planned to return to the field. So be tender and patient and remember they love you very much. Big Sis Janet

     
    • courtenayfolk

      February 15, 2010 at 7:12 pm

      You are so sweet! I will!! Thank you so much! Little Sis – Court

       

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