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.

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