Tuesday, January 26, 2016

God is enough!

I wanted to update you on Days 1 and 2, but more than that, I want to make sure you know that God is all you need. I have had some pretty bad side effects with IV steroids since 2010. I am not sure what changed, but since then, they have not been my friend. The protocol for Lemtrada infusions is to get high dose steroids for an hour before starting Lemtrada each day. The steroids are to control side effects. My doctor knows how I am with them, so he put me on half the normal dose. I never get to be in the "normal" category in anything. While on those yesterday, my blood pressure went up (common). After finishing them, my blood pressure plummeted. I thought what I was feeling was part of the process so I tried to tough it out. I finally said my nurse's name. She looked up and said, "You look awful". She checked my blood pressure and then started giving instructions. They pushed 2 bags of fluids, etc. That worked eventually. I also started to feel the effects of the Lem. My back started to hurt. It felt like muscle spasms. I told the nurse that I better get a baby out of this. It moved down the back of my legs, up to my shoulders and neck and the back of my head. In the middle of that, I thought, "I need Doug in here." He was in the hall and had no idea anything was going on. I heard God whisper, "I am enough." I said, "Yes, You are, God". Nothing changed physically at that moment, but I had crazy peace. That is the kind that is unexplainable in a particular situation because it is not normal; it is from Him. By the time I left, all of that had improved. I just had a gargantuan headache and my legs felt like Gumby last night. 

This morning we headed back. My headache wasn't nearly as bad and my legs were better. The nurse watched me constantly all day, but the steroids didn't have the same effect as yesterday. My back started hurting, but the nurse had suggested that I bring my muscle relaxers today. I took those and the pain never spread. Thank you Jesus! On the way home, Doug asked me several times how I felt. He doesn't always believe me when I say I feel fine.

Now, back to God being enough. If someone asked us if He is enough for us, we would say, "yes", but most people lean on and depend on so many other things in their life - their husband, parents, children, job, strength, possessions, money, and on and on. Think about difficult situations you have been through in your life. If you had been all alone with nothing. Family was unavailable or not there, no physical strength, no money, nothing but God. Could you have made it through that? I don't like to think about those things, but it is easier to let God show you what you depend on in addition to Him now, than to go through a fire for the specific purpose of burning off the dross of your dependencies. God knows the only way you will live an abundant life is if He is everything and He is enough. I don't love Doug any less, I just take any crazy expectations or pressure off of him. He always tries to be there to walk with me through difficult times, but he knows he can go to Ukraine and not worry that if things get difficult, I will fall apart. I am definitely not perfect in this and never will be but, hopefully, always growing in my faith walk. One week that Doug was gone last summer was awful - physically, emotionally, spiritually, in every way. We would Skype most nights. I would paint on a smile and convince him I was fine. I don't think I handled that well at all. God did some work before the next trip. He completely changed my heart. I thought after that week having been so awful, that I would be upset every time he left. It has been the opposite. I am excited about the amazing things God is doing through Prevail Missions. I love the excitement in his face and voice on those Skype calls. Is it easy? Nope, but I handle some really tough things in a completely different way because God showed me that He is enough. What a change that revelation makes in the way you walk through life. I pray that God grows me in this every day and I hope that I don't continue to only learn lessons the hard way. I say, "God, try me one time. Just tell me what the lesson is and see if I will learn it without having to walk barefoot across hot coals." He has given me plenty of chances to do that with what I read in His Word, what He has taught me in my life already, and the powerful messages Doug has been preaching. Evidently, I am just very hard-headed. Hot coals, I will see you soon.

Wednesday, January 20, 2016

Here we go!

I have friends and family who have asked for updates through this journey ahead of me and some MS friends who would like to have a daily journal so they have an idea of what to expect when it is their turn. I didn't feel like Facebook was where I wanted to post daily. I decided if I use my blog (last used over three years ago), it would be optional. Haha! No one is forced to read the tedious, boring details but it will be here for those that have this ahead of them. Of course, everyone's experience with Lemtrada will be different (I am talking like the FDA now). 

I remember many years ago saying that I felt like there might be a cure for MS in my lifetime, but it would certainly be too late for me. Then a few years ago, I heard about a drug in trials that looked really promising - still a long way off. Then a couple of years ago, this "really promising" drug was really going to happen. Then researchers ran into roadblocks the U.S. Finally, in November 2014, Lemtrada was approved and I was put on a waiting list. This is not a cure for MS, but the results of the clinical trials blow my mind. In the majority of patients it stops the MS in it's tracks. Many people even have an improvement in MS syptoms they are experiencing daily. There is a chance I can not only stop getting worse, but I can actually get better. Several months ago, I came off the waiting list and into the cue - February 1st through 5th. Today I found out that they can get me in Monday, January 25th!

Lemtrada rapidly depletes the immune system cells (T and B cells) that damage nerves in the Central Nervous System. Once those cells are destroyed, the attack on the nerves can potentially be halted. A new group of T and B cells will eventually be produced by the body and hopefully, the new immune system will behave differently. I will be getting rid of this immune system that has been attacking me for 17 years. As with any drugs, there are potential side effects, but none I plan on having. This could wipe me out for awhile and I will have to be super careful around people due to my tiny little newborn immune system that is growing. You know how I like pictures in my mind. I like that picture of my little growing immune system better than the picture of my defenses being annihilated. 

I will start taking 4 medications Saturday in preparation for Monday. I will take one antiviral for two months. I will also have IV steroids along with the Lemtrada infusions. I don't have a great relationship with steroids. I will be in Cullman each morning at 7:30. Doug will put me in a little red wagon and wheel me in because I will probably be asleep. I will be there for 7 hours. It is about an hour and 15 minutes to my doctor's infusion center from Muscle Shoals. 

I have no idea exactly what is ahead of me, but God does. He has been working on it for quite awhile. I may not be in that percentage that respond well to the medication, but that won't be a surprise for Him either. My journey with MS has been crazy, but He has always been the constant in my life. I have seen Him use MS in my life in such a huge way. It made me dependent on Him. I learned that I literally can't get out of the bed in the morning unless He does it. By the way, neither can you. I have been traveling and speaking to groups of people who have MS for 13 years. I have met hundreds of people that I never would have met - not just people effected by MS, but taxi drivers, pharmaceutical reps, and the poor people who are stuck sitting beside me on a plane. One of my favorite "God plane rides" was a young man in an Air Force uniform (he looked about 15). I talked to him about God and he said he was a Christian. I thought I was sitting beside him because he was ready to hear about Jesus, but he already knew about Him. He asked why I had been in Pensacola. I told him I had spoken to a group of people with MS. His eyes got really big and he said, "My mom has MS and I have been so worried about leaving her!" God did it again! So even if this medicine has no effect on me, I know God has something planned for His glory. 

I have been excited about getting started but I have been tempted to be anxious and to dread it, but I just remembered what God taught me about dread. When I dread an event or a task ahead, one of two things will happen. 1. I stress out about it and it is not as bad as my imagination thought it would be. So I went though it anyway in my mind or 2. I stress out about it and it IS a difficult situation. Then I have gone through it twice by dreading it. 

Here we go! "I know the Lord is always with me. I will not be shaken, for He is right beside me."

Missy