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!!!
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 –
make ´em wonder what you´ve got
make ´em wish that they were not
on the outside looking bored
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.