Friday, March 28, 2014

Chicago Post Tranplant Appointments

One Year Post Transplant Flu Appointment

Preparing for the follow up appointment this time seemingly was more daunting than the actual appointments.  I try and have most of the tests the transplant team requires done locally which eliminates at least one day of doctors poking and this and that while I’m there.  I am so thankful for the health care professionals here doing whatever it takes to get me what I need to bring.  As a matter of fact the MRI’s were completed in enough of time for me to mail in time for Dr. Burt to review before my appointment.  It is a blessing, to have a clear picture of how the lesions look and be able to discuss the next step with us at the follow up appointments. 

We left early Tuesday morning for Chicago for what we thought was going to be a long     grueling three days of “hurry up and wait”, or miles of walking from one Pavillion (that’s what each section/clinic is called at Northwestern Memorial) to the other, (and after a while they all start to look the same so you walk more than you have to b/c you are lost) but to my surprise quite the contrary. We went straight to the laboratory for labs, from the airport orders were in the system already, things were really going smooth.  I was so glad to see Gypsy the initial lab tech that did all the preliminary labs before the transplant you can imagine how relieved I was knowing she was going to draw my labs (she loves the Lord).   We (Joshua, Dee because it was Spring Break, and I) had enough of time to get lunch and sign in early for the first appointment, at the eye clinic.  Of course there was a bunch of paperwork to fill out (let me just do a shout out to the fingers … glory my writing is really good when you can read what I’ve written) took me a little while but I did it all before they called me in to see Dr. Melan.  He is the Ophthalmologist that took care of me after the transplant; however I did not see him at the six month follow up.  After the visual field, eye pressure check and dilation (dark eyes take forever to dilate) he said that I’ve lost more vision in my right eye (the eye that lost central vision during the first exacerbation) but as with NMO there is no explanation.  He said outside of the optic nerve damage the eye is healthy.  He also said that the vision is so bad I wouldn’t notice losing more vision in that eye unless isolated for testing.  My left eye on the other hand is stable and I am grateful to be able to see.  He recommended that I am followed by a local Ophthalmologist, and return in one year.  It was 6:00 we checked into the hotel (not the one we usually stay in) but it was fine to shower and sleep, and that is exactly what we needed after traveling and appointments.

Day two began with Dr. Balavanov the Neurologist of the team, his practice is not a part of Northwestern Memorial Hospital system, so we head across town to Rush University.  After another boat load of paperwork he called us in for the appointment.  Dr. Balavanov treats patients with MS and other Neurological diseases including NMO.  He was very impressed with the results so far.  He told me that his opinion is that I will continue to improve up to two years, the lesions will heal but to what extent the scars will have is unknown.  He did a very thorough examination including me doing some crazy moves which tickled Dee, we were all excited that I did them all without falling or holding on to anything.  He noticed right off that my balance was better and that I walk with confidence that I am not going to fall.  We discussed tone, and spasticity and how the two are the primary reason my walking isn’t better but I’m not discourage, rather remain hopeful.  He prescribed a new medication called “the walking pill” but wanted me to take it in the compounded form.  Insurance is still an issue until the positive numbers reach FDA regulation. As soon as the pharmacy in Chicago has it they will mail it to me.  In the meantime I’ve contacted a local pharmacy and they are able to make the prescription.  It was close to 2 p.m. so we had lunch and headed over to see the Transplant team. 

We signed in and of course more papers to fill out.  The nurse passed right by me but I didn’t know she was looking for me until she walked back and called my name.  I got up to follow her back she said she did not recognize me.   She did vital signs and then Dr. Burt came in.  He said he was amazed to see how well I looked.  He said he couldn’t be much happier (by the way he is a believer) with what is happening.  He read in his notes from August that he thought I looked well, but he did not know how much more I would improve, this exceeded what he expected because of the severity of the exacerbations.  Overall I looked so normal he said.  Hearing that was music to my ears, because I see the stares and all I want is to be “normal”.  After his examination he agreed with the other doctors that I should continue my journey.  The most important thing he said to me (as far as I’m concerned) is that (1) there is going to be permanent damage how much, and what will be the extent no one knows but we are not at that point now.  (2)I am no different from anyone else life gives no guarantees we have to trust the Giver of life and live until we die. (3) There are NO new lesions or evidence of new disease, and (4) the NMO titer test is negative and all of that is good news.  He talked to me about some other important factors (eat well, drink plenty of water, and to be sure to get enough of rest) that we all would benefit from if we did them, but that is another post I will share another time.

There you have it, Glory to God great things HE continues to do in my life!!
Thursday, February 27, 2014

One Year post Transplant

Sitting for a few minutes looking back over this past year, completely consumed by the Faithfulness of God, I am so grateful.  From getting out of my bed in the morning until the moment I lay my head down on my pillow to sleep and everything in between happens only because of Him.  It is in Him I live, it’s in Him I move and have my being (Acts 17:28), and I am grateful.
I will admit that there have been and continue to be some hard days, but I try hard to focus on what He promised me and that is to never leave me alone or forsake me (Hebrews 13:5) for having that mindset  I am grateful.  The Lord has bought me from a MIGHTY long way and I  have the “I just can’t help but be grateful” attitude, and I make no excuse for it. 
I’ve been released recently from the therapy center to my home therapy on my own which is such a blessing.  I’ve tried out a couple of gym programs and will make a decision within a few days to continue strengthening, and building muscle that will help with balance.  I am grateful, that the therapist final words to me were “keep on trying difficult things because that is how you will be able to do the things you desire” to do.  I am grateful that some of the things I desire to do are also things that I enjoy doing.  I’m really looking forward to that.  I visited the local bike shop and test rode some bicycles, and will be back riding, as soon as the details are worked out for a new bike.
I’ve learned so much during this incredible experience.  My sister and I were reminiscing about how after the transplant we both just passed out Into a deep sleep, we had anticipated and had gone through so much to get to that point it exhausted us.  We were awaken by the night nurse who told us we both slept through the shift change which she said was unusual because most people are wake with numerous questions.  It was if we just fell in the arms of almighty God relying on Him to work through the transplant for complete restoration, no more concern.  We listened intently as the details were explained but I told Rida (my sister my) “that was way too much information given too quick to remember” she said, “you don’t have to remember that is why I’m here I’ll take care of everything” and that was music to my ears, that is exactly what I did.  The next 9 days were the worst of all but that is all behind us and I am grateful. It was during those critical days I learned the most about gratitude, and resonates loud and clear today.  So grateful that God gave us strength to pursue avenues to get to the transplant trial, there was no other options.  He gave us hope that forced us to keep on trying.  Just this week in Bible study I was reminded even though I don’t know what God is doing I am learning that “all things work for the good”…(Romans 8:28) including trials endured by this disease.  The Lord showed Himself strong through the transplant team, other doctors, nurses, support staff and even other patients. 

I learned that I was created to have His characteristics, so how I live, what I say, how I act are all ways to show gratitude when those things reflect Him.  Any opportunity I have to sing praises to God I will, (Psalm 147:7), with my whole self-every single part of me, because there were times I was unable to speak let alone sing but I tried.  I am going to express gratitude through my doing for others, serving whatever that looks like.  Psalm 150 mentions praising the Lord 13 times, overflowing from my heart is praise to my God, great things He has done.

I will be returning to Chicago for the one year follow up appointment required after transplant in a couple of weeks, and expect a good report.
My intentions continue to be to help raise awareness about Neuromylitis Optica (NMO), aka Devics Disease, help in the effort to find a cure, and to render aid to families directly affected by this disease, and for the many opportunities the Lord has afforded me in these endeavors I am grateful. 

Going forward I will finish old projects and begin working on the newer ones as the Lord directs. So thankful for the love and support each and every one of you have  shown me and my family. 
Monday, October 7, 2013

My faith, my help for the journey

But thanks be to God, who always leads us as captives in Christ's triumphal procession and uses us to spread the aroma of the knowledge of him everywhere (2 Cor. 2:14 NIV).
But thanks be to God! He gives us the victory through our Lord Jesus Christ (1 Cor. 15:57 NIV).
What a blessing it is to be assured that we prevail in victory according to the word of God.  We can hold our heads up high, shoulders squared, marching forward in the promise that we were created to WIN bringing Glory to God.
No doubt we will face obstacles as we go through this life on earth, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world (John 16:33)” that’s a good time to rely on His promises.  Overcomers!
I will admit during this journey, (especially when my hands were too weak to hold my bible, or unable to reach, or push the buttons on my pc to hear the word) my attitude wasn’t what it should have been. Yeah, most Christians would have been able to walk through what I've been through with flying colors, but it hasn't been that way for me.   However at some point I did convinced myself to do something different.  I recalled scripture I’d learn from my childhood days, to the ones I’d say with my girls for our scripture for each week, and all other means I’d hid the word of God in my heart.  In fact I remember the second time around at Baptist Rehab I would pray scripture out loud, one nurse walked in on me late one night, she said another nurse passed my room and heard me, she thought I might be losing my mind. It was my routine every night, after the room grew dark, and quiet I fell asleep most nights after singing, and praying to our God, it was my routine and realize now it was faith that the positive activated attitude was restored (mindset which is essential) and continues to be my motivating force to face every day.
God has purposed a journey for each of us, we march forward relying on His promises that He goes before us, and will never leave us. I am studying the Sovereign God, and the struggle I am having is the same issue I’ve had from the beginning of this season in my life.  I’d like to say that my faith is hands down what has bought us this far, since I am taking an honest approach let me also say  I really don’t get it all… and I am learning through this study I don’t have to get it all I must just trust HIM!  I read end of the story we are victorious.
I am excited about learning, and sharing new ways to defeat the enemy (not to give him credit) but he is on his job, he came at me with fear, and doubt.  That fear, and doubt is no match to what the word says, and the enemy will flee when he is being body slammed with the word.  I meant business, praying God’s word back to Him, I couldn’t go to sleep otherwise no wonder they thought I was losing my mind. Many nights I couldn't wait for them to make rounds so that I could start because I knew God would meet me there.
I deliberately use my energy and strength thinking on the things of God, infusing His word throughout my mind. Exercising my faith putting it another way. Do not conform to the pattern of this world but be transformed by the renewing of your mind that you may prove what is that good and acceptable and perfect will of God (Rom. 12:2).
I needed a change in my situation that came about when my attitude changed.  I am marching forward, in the midst of present circumstances. Every now and again I check my attitude, the thrust from His word is necessary to keep on this journey.
Wednesday, October 2, 2013

Sunshine take a deep breathe.

God has allowed rays of sunshine to peak through the clouds off and on during the course of this journey.  I want to share one of those rays of sunshine.  I am so fortunate to have such a supporting family, our journey has not been a walk in the park by no means.  This sun ray by way of a quick vacation was a welcome of fresh air for us all.
The surprise cruise was planned for my mother and I this April (I am born on my Mother's birthday we celebrate it most of times together).  Two of my sisters, my niece and one of my daughters put a cruise packet together for our birth month, and a chance to celebrate life. 
There was no scheduled information initially about the transplant.  I ended up being transplanted end of February and under no circumstances could I go on a cruise in April.  They contacted the cruise representative, and were told that our cruise could be scheduled when we could take it.
The trip was scheduled for September praying that the transplant would go well.  Nothing was a guarantee but we prayed that God would favor our desire.  He did we all got our passports, dotted all the i's and crossed our t's.  Six month post-transplant appointment went well, so we prepared for the cruise.
 Now who would imagine going through a complete transplant and in six months afterwards going on a cruise in another country ah definitely a "God thing".  I never told anybody but I did not think that I would make it on the cruise.  Make it oh my goodness, I made it with flying colors.  I walked everywhere we had to be except for the embarkation because it was such a far walk, along with the fact that everyone except me voted for me in a wheeled chair.
There were many things to do on the cruise, but my favorite thing to do was dress and get all together and talk. We had a lot of time to do that.  This is the first time we have all been together and I feel as well as I did.  We laughed, and spent time just loving each other without a cloud hanging over our heads.  We had an uno bash too (I did not win).
 It took lots of planning, and keeping it away from me (in other words I was not in control of nothing I did not like that part)was such a blessing. I so appreciate Rida, Wanda, Nae, and Rolonda going out of their way, and succeeding to make it a wonderful birthday/life celebration.
The rain falls, but I am grateful to after the rain the He allows the sun to shine. It is because of His Son we live, we move, and have our being according to Acts 17:28.
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.
Saturday, May 18, 2013

What ... back to back exacerbations?

I was told to focus all my energy on recovering, because it was very unlikely to have back to back exacerbations. Every ounce of energy I could muscle up went on recovery and the recovery required that and more, however I had another exacerbation before fully recovering. We’d enjoyed a fabulous July 4th weekend in Dallas with Roland, Rida, and Kitty my brother in law and two sisters. It was the first time my family and I were able to go anywhere since coming home and we had a wonderful time. The men (Roland and Joshua) sat around catching up, while we cooked our favorite seafood dishes, along with salad. We shared stories while we ate, and then as usual the sleep monster came and dragged the men away to the living room right in front of the TV. We quickly cleaned up the kitchen, so we could get on with our stuff. Rida and Kitty overhauled my feet (three months in the hospital did a number on my feet). Kitty did my eyebrows, and let me just say I was ready when she finished. We ended the evening like we always do when we get together laughing about our days growing up. We got up packed and went to church the next morning (we planned to come back home after service) with Roland and Rida. Walking in to church seemed so difficult, Rida noticed right away, but I convinced her that I had not had time to get my bones moving well before we were off. I think I was even trying to convince myself too because I did not want to think about having such a hard time walking after I had done so well the entire weekend. At the altar call I felt compelled to go and have a minister pray that my normal walking pattern would return. As soon as service finished we said good-bye and headed back to Arkansas. All during the trip back I found myself praying for God to continue to restore me, but could not deny the weakness I was experiencing. We made it home safe, Joshua headed to work and dropped Diana to school on his way. I’d decided to rest after therapy. I was having both physical and occupational home therapy, provided through our home health service, my vital signs was also monitored by the home health nurse. The nurse noticed my pulse, and blood pressure both to be elevated during her visit so she notified the doctor’s office. She contacted the therapist and told them to take it easy on me during my therapy. When the therapist came I asked him what he thought about it all he said it was probably fatigue from the trip. I so wanted this to be all there was to it. Well, by late afternoon I was on my way back to the hospital in Little Rock for evaluation. Turned out I was having another exacerbation and it was stronger and capable of more damaged than the first one. Initially I was so enthusiastic because of how well things had gone the first time around. However the reality of the matter was quick to surface. Upon arrival to the Neurology floor the nurses all seemed to have a sense of urgency unlike before. I noticed tests were repeated frequently, soon the doctor’s made their rounds, and it was at that point we were made aware of the seriousness of my condition. It was very difficult to accept their grim prognosis, and I pretended not to hear what they had to say. Even though I fought day and night my body deteriorated rapidly. One morning I became very disoriented, and confused. I was aware early on that there could be some mental changes, but to this point I had not experienced it, everything had been physical. Simultaneously, I began to have difficulty breathing and the doctors said that they were moving me to ICU to be intubated. I cried and screamed for Rida, and my mother not to allow that because I felt like it would end my fight. They did what they could, however the doctor was very aggressive and said she was going to do what she had to do to save my life, and that there was no way I could live if I could not breathe. I was into my fourth day of plasmapheresis treatment; and the nurse explained to the doctor that I improved after each treatment. He asked her to allow him to treat me and see what the outcome would be after treatment. She agreed, but made sure it was clear that if things did not improve I would be intubated without question. Thank God, He turned things around immediately, my breathing was better afterwards, and we received confirmation that I was going to be ok. I stayed in ICU for a couple of days for observation through the final plasmapheresis treatment and went to a step down unit when the treatment was complete. Physical and occupational therapy were both ordered, however I was not responding well so the doctors ordered the Rituxan a form of chemotherapy to try and turn things around. After my body continued to reject, and have no signs of recovery, I was released to the rehabilitation center where I recovered the first time. At the rehab center I was a familiar face and, I felt fortunate to be back where the nurses and therapists knew me and was somewhat familiar with Neuromylitis Optica. Unfortunately I was not assigned to the same therapist, and that contributed to the quick negative response the therapists reported to the insurance. The insurance decided that I was not recovering in the allotted time so they could not continue paying for therapy. The rehab center is in my opinion where the turnaround happens. However if there is no optimism on the therapist part that a turnaround is possible than no matter how much hope the patient has the writing is on the wall and it is a matter of time (in my case 12 days to be exact) before the insurance sides with the therapist and begins the transition. I was told to call in my family that the team had made a decision for me to be released. I said where to and the social worker told me I could be released to go home where I would need a caregiver 24 hours a day. She continued and said that my family could decide for me to go somewhere else of their choice. At the time I was being lifted up by the nurses, and med techs with a Hoyer lift. She assured us we did not have anything to worry about, because they could make arrangements to have a Hoyer lift for me at home to make it easier on the caregiver. They had also made arrangements for me to have a remote controlled wheelchair since I could only use a couple of fingers due to weakness in my hands. I could see Joshua and my mother’s face it was as unacceptable to them as it was to me, at the time we did not know what to do or where to turn but we were all in agreement we could not accept their solution. The following day I made several calls, one of them to the VAMC in Fayetteville, spoke to my PCP and he talked with the Chief of Social Work Service. The team had decided to discharge me within the next two days. Social Work Service called Joshua to go visit two Nursing Facilities with rehab centers. He decided on one that was approximately ten minutes from my home. Needless to say driving up to the Nursing Facility was one of the saddest days of my life, but after some time the sadness faded. I was good at knowing when a crisis was starting, and was told at the first sign to make a nurse aware of it because much of what happened next was determined by quick treatment. I was hesitant because I did not want to be going through another crisis but the symptoms could not be ignored, and before I knew it I was headed back to Little Rock for the third time. While being transported I was in the company of what I now know to be another Angel God put in my pathway. He told me about a rehab center within the area after hearing how the rehab center in Little Rock wrote me off the last time I was there. He recommended this rehab because he did some training there. I went through the plasmapheresis, and chemotherapy treatment. I was released to Health South Rehabilitation Center, the center the first responder told me about where I was given every opportunity to recover and I did. They admitted me on a Sunday afternoon, and that was an indication to me that things were going to be different. Pauline, and company reassured me that they would make sure that I would function to the best of my ability before I left, and they kept their promise. I was assigned to a Doctor (Dr. Bo) whose faith was deliberate, and he allowed the Spirit of God to direct him to take good medical care of me. From the beginning he told me he was not familiar with Devics Disease so he was going to have to rely on the Neurologist from Little Rock, but he was very confident in the therapy team and he was going to take their advice when it came down to getting me back on my feet, things worked out for my good, and Almighty God received Glory and Honor. I got there at the beginning of August unable to do much, and released October 10, able to care for myself while Joshua went to work and Dee went to school. Home health again assigned me to a nurse and I also had physical and occupational therapy again. I continued to improve and was released from the home health agency, able to drive myself to a therapy center to continue therapy. It was at this time I begin digging deeper for treatment options for Neuromylitis Optica. I welcomed the opportunity to participate in a Clinical Medical trial using Stem Cell Transplant as a treatment option. I had not been aware of any trials but I know God lead me to the web site detailing this clinical trial. I read the information on February 8, 2012 and received a response to my request for more information on February 10, 2012. Today is May 18, 2013; I had a stem cell transplant for Neuromylitis Optica also known as Devics Disease February 27, 2013. There were many obstacle along the way and I have a long way to go to recover, but I am grateful for all the things that the Lord has allowed us to come through. I am so encouraged that my trial has strengthened my family and I, and hope that it encourage and inspire you to press your way through the storms of life. God will never leave or forsake you, He will never allow anything that you are not capable of bearing. You will find discover strength to endure as you go through that you were unaware you had.