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.

These pictures are so awesome!!  I think it is fantastic that I had such a wonderful surgeon and PA that they took the time to indulge my request and take these pictures!!  Personally, I think they are so great they could be in a surgeon’s manual of “How to Get the Best Piece of Thigh Muscle”!!  Thank you Patricia and Dr. Varma!!  You guys rock and are the best neurosurgery people ever!!!

Just wanted to let everyone know that we are home and I am doing great!!!  Fabulous Patricia (the PA) was able to take some pictures, so I will share at some point those for those of you interested   For me, I am excited about seeing them!!  On a funny note…..apparently under anesthesia, I realized that there was a nurse that spoke Spanish.  The doctor was about 50 late, so for that time apparently I carried on a conversation with the OR nurse in Spanish.  Don’t recall any of it!!  But I am excited that I was able to do it   All I know is that I have the rest of the staff laughing at the sight of it all   I cannot say enough about how wonderful the entire staff at MUSC has been.  Today the stars of the show were Dr. Varma (neurosurgeon), Patricia (his PA), anestesia (rocked because I woke up very easily and happy as a lark) and all of the nurses who took care of me (even the wheel chair out to the car lady who made a stop to help me use the restroom on the way to the car)!!!!  I was home by 10am.  And I even walked up my parents 17 steps to my perch on their couch in front of HGTV and FoodNetwork!  Thanks for everyone’s prayers!!!  I cannot emphasize enough how wonderful I feel.  My right thigh is sore, but I am only taking Ibuprophen and feel great!!!  Comparatively it is nothing, I can handle this!!!!!  God is so good!!  I know He is my Great Physician who guided everyone through my surgery!!!  We hope to know something in 5 to 7 days.  So lets all keep praying for the testing that is going on my little 1 inch square of thigh muscle tissue!!  Go pathology people whoever you are!!!

Love, Love, Love,
Court

First of all, all praise, glory and honor go to our Lord and Savior who suffered for all of His children on the cross of Calvary to pay for our sins. He endured more than I could ever imagine. When I (Courtenay) think of what I am going through, I know that it could not even compare to that. I do just want to share with everyone where we are with my diagnosis.

First of all, I am invigorated everyday by God’s grace alone. I never thought that I would ever survive being separated from Jacob and my babies like this. And each day I make it. And not only do I make it, but I am not experiencing any type of constant sadness or loss over the time apart. Don’t get me wrong, I do miss them, but it is so energizing to feel God sustaining me and holding me during all of this. He is also doing the same for Jacob and the kids in Costa Rica. All praise, glory and honor to Him, because this would be impossible for our family without Him.

Second, as many of you already know, I flew in Sunday January 10th and the next day I was able to see the best of the best at MUSC. We began blood work and other testing that day. Results began to come in to point us in one direction. On Friday, I had a CT of my lungs and a MRI of my thigh muscles. As far as I know at this point (I have an appointment in the morning Wed.) they are continuing to point in the same direction. So we are making progress, but still do not have a diagnosis. I am taking a pretty heavy dose of steroids daily and that is keeping much of my daily pain at a manageable point. Praising the Lord for that

Third, the doctors, my family and our home church agree that after Jacob helps the teams that are due to come in to Costa Rica in the next 3 weeks, he and the kids are going to fly back to SC. Again, a very tough decision, but on prayerfully made. Our desire is to be together as a family while we focus on getting me back to health. Our ultimate goal is to return to Costa Rica to love on the people there, bring them the message of God’s grace, love and forgiveness and serve them as quickly as possible. This is not going to deter us. We will not give in that easily!!!!

How can you help? Please continue to pray for us and the people of Costa Rica. We desire to serve our Lord and Savior there and have full confidence that we will return as quickly as possible. Please pray for our finances as well. My last minute flight was paid for by my parents. However, we are having to meet our deductible ($1500) and pay for Jacob and the kids to fly back ($1336). These are unexpected expenses. If you or anyone you know would like to donate towards these expenses you can either mail a check to Global Outreach International PO Box 1 Tupelo MS 38802 with our name on it. Or you can donate online at www.globaloutreach.org and follow the prompts. Just donate to Jacob Folk – Costa Rica.

We are really in awe of the loving responses of encouragement and prayer that we are receiving. It has truly made all of the difference. We will continue to keep everyone up to date as things continue to progress.

Love,
Court

Just wanted to let everyone know that we are still waiting and working hard to get to the bottom of all this with my health.  In the mean time, my sweet pastor’s wife sent this video to me to encourage me and I wanted to share it with all of you.  http://www.tangle.com/view_video?viewkey=152b5103d741aca61093

I am not sure how to add links to this, I figure you can copy and paste that and watch it.  It is only about 8 minutes, but it is worth watching.  Also, my heart’s cry right now is this song

Check it out too!!  Love to all.  I will let you know when we know.

Isaiah 40:31
but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Court

I know that we have not posted in a while and I am I am sorry for that.  I want to update everyone on what has been going on.  Back in October I (Courtenay) began to have pain in my left hand, wrist and shoulder.  Thinking I had slept on it wrong I ignored it.  It continued.  Once we returned to Costa Rica it quickly escalated.  I went to see our family doctor in December and he referred me the next day to a rheumatologist.  I was receiving wonderful medical care in Costa Rica and was happy with my doctors, but was not finding the cause of my problems.  So, on this past Saturday it was decided that I should fly back to SC and have testing done at MUSC.  I flew back on Sunday leaving Jacob and the kids in CR (a decision that was very difficult).  On Monday I saw the head of research for rheumatology and immunology at MUSC.  I immediately had an ECHO done and a ton of blood work.  We are still waiting on much of the results.  One thing that stood out was that my cpk was over 1000 and the normal is 200 or lower.  That apparently explains why my muscles have been so weak and hurting.  Today, hopefully I am going to have a MRI of my thigh muscles and at CT of my lungs.  Depending on the results of the MRI, they may do a biopsy.  The doctor is saying that this could still be a result of a virus, but being that it is pushing 7 weeks of pain, we are nearing the end of time for that.  He has tested for Parvo, Lyme, mono, and many other things, but we don’t have all the results.

Please continue to pray for not only my health, but Jacob and the kids in CR.  Jacob is facing not only doing his job, but all of mine (including homeschooling) and Satan just seems to be throwing things at them left and right.  Two nights ago one of our gates broke and he had to fix it.  Then that night Jacob woke up at 2am to find the kitchen flooded.  And last night our only means of communication, our Mac computer, dropped and the screen cracked.  He could seem my sister Monica’s name on the Skype, so he was able to contact her, but not us and therefore, we have no means of communication.  This is obviously making this time of separation even more difficult.

Please also pray especially for the village of Cot, CR.  We are in need of a place to hold services.  Fransisco is currently staying at our house.  He is welcome to stay as long as he needs, but without a home in Cot, there is also no place to have church services or Bible studies.  Also, on our way to the airport on Sunday, we ran into a wreck on the autopista (Pan-American highway) where a bus had flipped.  Jacob heard that 25 people died in that wreck.  Not to mention injuries.

We must all realize that when we step out to battle Satan that our most powerful weapon against him is prayer.  So we are calling on that.  The area of Costa Rica where we are working is a stronghold of Satan’s and at one point a tica (Costa Rican friend) said to me, “Wow, you guys are going to attack the heart of the dragon here in Costa Rica by going to Irazu and Cartago to minister.”  So please not only remember us in your prayers, but also the Ticos.  This is a matter of eternal salvation.  They need God’s grace and salvation through the finished work of Christ.  We are bringing them that message and Satan wants to stop us.  But we are not going to let him.  We are going to persevere and we are going to continue to do the work of our Heavenly Father.

I will keep you updated on all of these situations as we know more.  Thank you so much for partnering with us and bathing us in your prayers.

Merry Christmas to us!!  We now have a post office box where we can receive mail!!  Please see our Contact Us button for the address!!  Yay!!  Now we hope to actually receive mail!  If you decided to send us something package wise, please let us know so that we can be on the look out for it!!  Yay!!

We are excited to say that our car has been fixed!!  It was the alternator!  Another answer to prayer is that some friends of ours here that have paid the bill for us!  Thank you guys for your prayers!  God is so good and the car drives better now than it did before!  Praise the Lord!  We also were able to move into the house that we are house sitting today!  The kids are loving the yard!!  They have been running all over it!!  We are going to be loving this house for the next 6 months!!  Please also pray that God would lead us to just the right place of our own during the next 6 months!  Thanks for all of your prayers! 

We do not have internet at the house right now, so communications will be slow until we get it worked out! 

GOD IS SO GOOD!!  ALL THE TIME!

Yesterday we went to see the house we will be house sitting and the Graef’s have 3 kids that all line up in age to our three!!  They all got along wonderfully and we are praying that we will find a house close to this house so that they can be long term friends.  Anyway, there was some hard playing going on!  They were having a great time.  Well, last night, Jacob went to the bathroom and turned on the light and found this scene!!  All I can think is that it was a quiet place to take a rest!!  LOL!!  Sweet Sophia!!

We have returned to Costa Rica to a car that does not work.  We got the message out that we needed prayers for that and we appreciate everyone that is praying.  We can feel your prayers, especially for our hearts in coming back to problems.  We had someone drive us to a hotel and are trying to make the best of this road block.  A man named Christian is going to be working on the car on Monday and then if he can fix it, he is going to bring it to us.  He is a trusted friend of our tico friend Fernando.  Please pray for Christian, that God would guide him to the problem and that he would have all that he needs to fix the problem.God is in control of all and we are looking to Him and focusing on Him and not our desires to go and do and get what we thought we needed to accomplish and all our plans.  His are perfect and He is looking out for us and our car!

The kids are doing great.  They are enjoying the playground here at the hotel.  It has a swing that has been made out of some parts of a car that Jacob explained to me, that I don’t understand, but it basically works like the that swing that spins around at Carowinds, but is much smaller.  We got some video, we will try to post it.  They are so flexible and as always, up for next adventure.

It is wonderful to have friends that pray!  We love you all.  Please keep it up and we will keep you posted.  We are happy to be back in Costa Rica, despite the problems!!  :)