My Platform NMO Rare Disease

Friday, August 23, 2013

Reflection 6 month post transplant

“You therefore must endure hardship as a good soldier of Jesus Christ.  No one engaged in warfare entangles himself with the affairs of this life, that he may please him who enlisted him as a soldier.”        ll Timothy 2:3, 4
This will be another long blog as I will catch things up and try to get in at least a weekly routine.
Traveling home today from Chicago, so many things crossed my mind.  Like the fact that I was going in for a six month follow up. The fact that I felt good, as opposed to not feeling well the last time I was in Chicago.  Oh the welcoming peace of mind and confidence going into these visits was such a blessing unlike the anxiety, and fear during the transplant procedures.  I’m not one who believes in coincidences, rather I believe that everything happens for a reason, such is the case of my devotional reading for Tuesday, (first day of appointments) from Jesus Calling a book given to me by a dear friend, titled The God that heals … we head out to the Transplant Team appointment.  All is well, including tests, results of MRI’s, and most importantly the examination.  The nurse called us to the back (Joshua went with me to Chicago his turn), Dr. Richard Burt (Head of the Transplant Team ), was at one end of the hallway, as I passed him his mouth fell opened, he had a difficult time believing it was me walking in unassisted.  He followed me into the room very anxious to get the appointment started.  He looked through all my medical records to remind himself about my specific case.  He finally said well, all things considered you are doing well.  He said there are never any guarantees, but all doctors want the best possible outcome for their patients, and how very pleased he is with my outcome so far, I remembered my devotional.  He added that it is very possible that things will continue to improve up to 2yrs after transplant so we are to stay encouraged my devotional came to mind again. 
We begin traveling early morning, I walked throughout the airports from one terminal to the other, (usually I push myself throughout the airports until I get to the terminal), it was wonderful to have the ability to walk, I was able to rest going through Midway airport because they have the moving strips so fun but tricky I had to really focus ha me focus get that picture in your mind.  After arriving we checked into the Worcester House (hospital housing for out of town patients) we walked from there to my lab appointment, let me just say we did a lot of walking before my appointment with    Dr. Burt the fact that he was excited to see me walking in made me enthusiastic knowing how much I’d accomplished throughout the day.  The nurse did her tests, made copies of orders for us, and sent us on our way.  We headed to the lab for a few more labs, had dinner then walked back to rest up for the next day.
Appointment time 11:00 at Rush University (a different hospital 30 minutes away), so we need a cab (Rita my sister and I had an experience with taxi’s) not an issue with Joshua, or (Nae who went the first trip) he stepped out and a cab picked us up.  Oh I forgot my devotional for this day “do not be afraid of being different”, it was clear how different we were in Chicago but God’s favor was upon us, His provision was sure.  The disease Dr. weighed in after his tests, and results he’d receive.  He thought that there will still be some improvement but some of the issues can be addressed now and may start to resolve sooner.  He handed us copies of orders, prescriptions, and off we went back to the housing area.  After resting we had an early dinner and took in a movie.  We walked to the water tower where the food court is and from there to the theater and back.  Up by 5:00 am headed back to Arkansas, safe travels to Chicago and back we are so grateful.  
From the diagnosis to date the truth still remains … God is in control, it is in Him we move, we live and have our being according to Acts 17:28, and the reason I was created is to worship God  (Rev. 4:10,11). Learning that true worship involves me living my life to bring glory, and honor to God, is a fair amount of the motivation required to persevere on this journey.
For the past two summers Diana and I have read a Proverb together a day (this was one of her “Daddy summer assignments”) we would then write up a little paragraph on it and then discuss it.  One day we came across Proverbs 14 and of course we’ve read it before but this day we were so cautioned by the word of God for talking so much.  She shared and I shared we prayed as usual but throughout that day, and since we are careful about when we speak and what we say.  We have sort of held each other accountable for what we learned.  Another friend of mine and her husband visited me while in rehab a year ago and spoke a word from Proverbs 4: 20-28 this scripture makes plain that the word of God is what we need to hide in our hearts and understand we will enjoy life and health.  I make it a habit to have scripture running through my mind at all times.  I do not even entertain the thought that NMO should make it difficult for me to memorize things bring on that challenge is my attitude about that.  Many in the health field encourage me to accept the fact that I have many disabilities; I say “no I don’t accept that, I have the ABILITY to do things different that is what I accept.” My family and close friends, are on me to slow down don’t do this and that my response to them is as long as I am moving no worries, get concerned when I stop trying.
While in Chicago I had some quiet time here and there just me and my Lord.  This intimate kind of fellowship with the Lord helped me to see things spiritually, which for me is healthy for me spiritually.  One of these times I was reading an article detailing how intricate the white blood cells are.  The author remarked that unless the body has an infection then the white blood cells just “hang out”. I thought about how this journey has played out.  The scripture at the top of this post reminds me of my Military days.  There is the mission, orders, personnel, and the equipment necessary to accomplish the mission.  You talk about a smooth operation when orders were followed, quite the contrary when another ideal was used.  Most missions have been tried and are true, this parallels with our Christian walk.  I made a note in my bible that someone said (Pastor Phillip writes in his bible) that strong faith merits intense trials as we journey onward to victory we will have trials.  Let me be clear that this has not been my cup of tea.  However I rely on the strength of the Lord. It is hard at times, but I know the promises of my Father are true and the enemy is full of deceit.  I make the choice to focus on what matters, the glory of the Lord, this is all about Him.  There is nothing this world affords for us when we focus on spending eternity with the Lord (Romans 8:18). Excuse me but I believe the report of the Lord, my armor is a sure fit and I’m the one He issued these orders, for this mission … find me forward marching until the mission is accomplished.

Should you need information on stem-cell transplant, on-going clinical trials for NMO, or any other way I can help feel free to contact me, or leave a message.
Thursday, August 8, 2013

Come this far by FAITH

I know it has been a long time since I’ve posted. I’ve contemplated many times about updating. To be quite honest there is so much pain surrounded by my last post; I get sort of stuck after reading it. Reading it has a paralyzing effect on me. I usually read the last post in order to know where to start up again because I am not to the point where I am posting daily. It has taken me some time to process it all and allow God to move me on forward. Of late He has been reminding me of the reason why I was created to bring Him glory, according to Isaiah 43:7 “everyone who is called by my name, whom I created for my glory, whom I formed and made.” We are all created to glorify Him. I remember asking Joshua (my husband) how in the world my body unable to move from my shoulders down give glory to the God I love dearly. My mother and my sister tried many times to convince me that no matter how things ended God would still be glorified. I’ll admit I was so confused and stayed that way until my condition seemed to change. I wish I could say that my faith was stronger than my anxiety, but the truth is I was miserable for a long time. God has been reminding me for some time of how much He loves me as well as how He cares about my least issues let alone this epic event going in my life. It should have been evident when He led me to the Clinical Trial information but I was so caught up in getting over this all, and how I could get on with what I thought my purpose was. Rather than getting in tune with Him to know what His purpose was for me. Pathetically I went on, He wanted me to know what I meant to Him when He raised up men and women all over the United States to freely give 30,000 necessary for me to be able to have the transplant. He worked out the details small and large from who would accompany me, how I would get to Chicago, and who would take care of my family while I was away; concerned about what concerned me uh I think so. Right down to what I would wear by way of Stevette’s. I’m a tough ole Texas girl, and although I’ve been in some really cold climates I usually don’t need layers upon layers to survive. Picking up some boots I had in layaway Stevette ask me if I had an overcoat I said I had a heavy jacket I thought I’d take she took me in the back of her store where she keeps sale items, and there was a coat with my name on it within my few dollar budget. On my way out of the store she followed me and gave me her gloves, and said you are going to need these too, you are all ready to go now. The Lord goes before us making our crooked way straight. You can believe me I had to wear the coat, boots, gloves, and scarf (all of God’s provision) thanks to the bitter cold weather awaiting us in Chicago. That is just one of many instances, which come across my mind sitting here today. When I think about what I have been through, and continue to journey through currently, I know that it is my faith that has brought me to where I am, and my faith that will keep me. Hebrews 1:11 speaks about the faith necessary to endure difficulties along this journey of life. I remember a minister explaining faith once like this, he said “faith is a two-step process, step one involves believing God is who He says He is, and step two is believing God will do what He said He will do.” For me, it was not much of a problem when all affairs seem well, however I found faith to be a lil bit of an issue after finding out I had a life threatening, incurable, rare, wicked disease. By the time I was properly diagnosed, I was experiencing problems from the medications I’d been taking for MS (misdiagnosis of MS is the case for most people, in reality they have Neuromylitis Optica NMO) while NMO untreated wrecked my optic nerves, and spinal cord. There was a very dark period in which I find difficult to talk about. As Christians, we are taught “don’t question God;” Christians are solid saints able to stare affliction in the face, faith intact, marching forward. I took some time arriving, but I praise God my faith in God continues to be the momentum driving me forward. Back to what the minister said about faith I mentioned before, being honest with myself during this time really was the breaking point for me, I was so broken by what was going on physically with me that it was difficult to understand what God was doing with me spiritually. I really wanted to know understand what was happening (thinking that if I knew all the answers than I would go through it better) only to realize that was not faith. It took me a long time before I begin focusing on the good that God was doing, and how God was still God through it all. A good friend of mine Rhonda and her husband visited me and left me with one verse Proverbs 4:23 “Keep your heart with all diligence, For out of it spring the issues of life (NKJV).” I thought this was a strange verse to leave with someone ill, but I wanted to understand what was in that verse for me, pursued God and found out that I had to deal with doubt, and the pain I was feeling in order to trust Him completely. I had to rid my heart of negativity, in order to focus my attention on the positives. Another thing that was beneficial for me during those truly dark days was when I found the strength to allow my inner being to ring out praises to God. This encouragement came by way of my long-life sister and friend. She received a word during altar call at her church and was so excited to share it with me. Upon arrival at the hospital where I was she announced that I should begin to praise the Lord with everything I had, not for my benefit but for the benefit of others, and the fact that the Lord loves the praises of His people. I reminded her that they were moving me to ICU to be intubated because I was having difficulty breathing and she wanted me to sing. When I did catch hold of that nugget she dropped I was being transferred from the rehab center to a nursing home and I could not understand any of what was happening. However, I found strength, and I continued praising Him. Psalms 103:1-6 is a passage of scripture very dear to my heart. God tells us to put Him in remembrance of His word and this is a good passage to do just that, as well as help me to go back down memory lane and see just what the Lord has bought us through. “We’ve come this far by faith; leaning on the Lord, trusting in His Holy Word He never failed us yet.” After being at some of the most reputable hospitals, I end up in a nursing facility where the attendants and staff treated me as if I was related to them. I had no reservation and my family had a peace of mind, that I would be taken care of. This is an example of the provision of God. I know that God really loves me (and you too), and everything that concerns me (large or small) He is able to, and He will take care of. Another thing that happened to me just a few days ago that I want to share that speaks to this very thing. I was taking care of some errands and left from one place back into my car, and I happened to look at myself in the mirror. You know your “chemo hair” is growing when you can see the back hair by just looking at it from the front. For a month or so the only way I have been able to see the back of my hair is to hold a mirror in front of me and look at the back with another mirror. I was so excited to see my hair by just looking at it from the front until I looked down and saw my neck there was no hair line just white fussy stuff (look like cotton) down my neck. I jumped out of my car to find a place where I could get that lined nicely. I look up see a place I don’t know a thing about, walk in and am greeted by a sweet young lady another one working on the side. She comes and brings me over to find out what I need. She compliments me and I begin to tell her my story. She does a great job, and we are both feeling so fortunate that I ended up there. I know this was in the Lord’s plan, He was so moving in everything that took place there. As I said He is concerned about everything that concerns His children. I pulled my wallet out to pay for my hair trim and she said “oh let me take care of that for you.” God is so good that was such a blessing that I know He did just for me. Yes, Jesus loves me the Bible tells me so.