My Platform NMO Rare Disease

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.
Tuesday, April 30, 2013

cont. Exacerbation

In the meantime my symptoms worsen, some gradual, however most developed rather quickly. I recall having a crazy fall resulting in a broken foot. I couldn’t believe it, there was nothing to cause a fall (I understand it to be a balance issue now) yet the fall that left me walking around for more than eight weeks in a neon pink cast(my only other choice at the time was midnight black what a large assortment huh)along with other weird happenings was a mystery. We sat down with doctors again and again to come up with answers that would help us with a plan to no avail. As time went on I got to the point in which my legs began to feel like tree logs attached to my hips I convinced myself that I was tired or that I was having a flare up from a previous back injury (I’d enjoyed my birthday weekend with my daughters) in Nashville, TN appreciating Nae’s performance onstage in a musical. Nevertheless reality sunk in after doing all the things I’d grown accustomed to doing to relieve myself. I managed to continue with my routine as if things would resolve because I was ignoring what was happening, they didn’t. By that Wednesday, I ended up in my PCP’s office having extreme difficulty walking; he started steroid injections for the next five days. Things worsened, so I called my PCP’s office this time he said to go straight to the ER. He said he would call my Neurologist and have him see me. My Neurologist happened to be out of town, so the Neurologist on call saw me. He consulted with my PCP after seeing me, and told him that I was in a serious crisis, and needed to be moved to a larger hospital capable of treating me. It took several hours get things arranged, the Lord saw fit to encourage me, with visits, prayers, calls, and texts (I had no clue the hardship ahead) but I had a peace, that everything would be alright. During the time it took to make arrangements weakness now went from my waist down, not only was I unable to walk, but I had no trunk control now. As the two medics discussed the best way to get me from the hospital bed to the transport bed, I could see my husband out of the corner of my eyes shaking his head in disbelieve being console by a minister, and deacon. I motioned for him with my head to come where I was (I was unable to use my fingers to point). We made pathetic attempts to assure each other that everything would be alright, but the fact of the matter was no one knew what to expect. The medics decided to put me in a sheet and lift me onto the ambulance bed. We yelled goodbyes and I love you to each other as the medics rolled me out to the ambulance to be transported four hours away. It was so strange that I was concerned more about my family finding out what was happening with me, and the fact I was having to leave my then my eight year old and my husband than I was about my condition. That night the grace of God was so evident, before we took off the driver came over, and got right into my face and he said “I am going to be very careful with you we are in no hurry to get to the hospital. They have been notified and they are getting your bed ready as we travel, you lay back relax let me do all your thinking.” In the back of the ambulance more of the same grace flowed through the attending medic, he told me that he had preliminary paperwork to complete and then he wanted to know all about what was going on with me. He admitted that he had never heard of NMO but he looked it up on their way to pick me up, he wanted to know more. After he finished his paperwork we talked the remaining time about more than NMO, it was very clear that God had me on a divine assignment. The medic shared some very recent painful events that he was going through, I was urged to speak a word of hope to him the grace of God again was undeniably present. We prayed for each other, and he handed me off to the nurses awaiting our arrival at the hospital. The hospital was well prepared for me so processing went very quick. Before I could get settled into my room, one of the things I wanted to prevent happening, happened Rida (my sister) appeared from out of nowhere. As I was fusing with Rida about driving five hours away my older daughter walk in after working she drove five hours, shortly followed by my middle daughter. They were just as upset with me as I was with them because even though I’d talked to them I did not let them know what was going on. The doctor finally saw me, and the diagnosis was “exacerbation” he told us the plan for treatment. Somewhat confused we decided to settle down, get sleep and regroup the next day. Continued IV steroids, plasmapheresis, MRI and therapy was the plan over the next few weeks and we would have to wait to see the outcome. The MRI confirmed the NMO diagnosis the fact that there were lesions in my spine, and brain along with my symptoms made the comformation. The Neurologists were optimistic, but made us aware that the reality was that NMO is a rare, nasty, incurable disease. After a few days we all decided that it was best for everyone to go back to their world that I would be fine. Not long after everyone left the treatment was completed and I moved on to rehab, were I begin recovering well. I saw my eight year old and husband every weekend. I received lots of mail. Once I the mail carrier asked the nurses who I was(some kind of celebrity) because I had so much mail. After three months I was released to home healthcare. I was assigned a nurse, physical therapist, and occupational therapist. Before leaving the hospital I was assured that I would recover, but it would be a long process, and not to get discouraged. Everything I was told came true. It took some time but I slowly, but surely got better. However before I could fully recover by mid-July I’d had another exacerbation, this one more powerful than the first (I’ll pick up here next time).
Friday, April 5, 2013

God keeps His promises

For no matter how many promises God has made, they are “Yes” in Christ. And so through Him the “Amen” is spoken by us to the glory of God.
(2 Cor. 1:20) NIV.
In a world of uncertainty, our trust is in a faithful God who will always keep His promises.
I continue to trust the promise of God that I am healed.  Recovery from a transplant is not as easy as I thought it would be.  I am thankful that I have been able to put one foot in front of the other day by day I am going to recover.  I am very tired and have been feeling cold this past week. The transplant team assures me that my body is still making adjustments, and it is still early.  I seem to feel better later in the day than when I first get up.  I try hard to stay busy during the day, but am still having to take a nap at some time during the day.  I am happy to answer phone calls, emails, and other means of communication.
I thought it would be a good idea to go back and detail all that has happened leading up to the transplant. According to my medical records I was seen at Boozmanhauf eye clinic for an unexplained optic neuritis in late 2002.  After many examinations locally and Little Rock, it was determined that I needed IV steroids for the inflammation in my eye.  I couldn’t see in my right eye when I went to the doctor to begin with, and that did not change even after the hospital stay.  A week later I was examined by a Neurologist who diagnosed me with MS, scheduled me for a series of test, but said that the treatment for MS is to treat the symptoms as they come up.  At that particular time the only problem I was having was the optic neuritis.  MRI, lumbar puncture, nerve conduction studies all pointed towards MS.  There is not a specific test to confirm MS all other diseases are ruled out and then MS becomes the diagnosis, based on the symptoms.  By this time I had begun having some weird symptoms for example my feet were numb, I was unable to grip anything with my hands, and I felt like there was a band around my waist all the time, it was very uncomfortable.  Another Neurologist saw me and said he was aware of a specific test for NMO, that he thought I should have because of the symptoms, and because more symptoms were coming up even with the medication he’d prescribed for me.  The test was positive for Neuromylitis Optica, (NMO) aka Devics Disease, the doctor told me that this was a very rare disease and that he could not tell me a prognosis, that we would wait to see what course the disease would take.
I did some research and found very little information on NMO.  I remember thinking to myself there is no way I am the only one with this disease, I need to find somebody else who has NMO to talk to.  I prayed and asked the Lord to lead and guide me to help myself, I really felt like the doctor did what he thought he could do and the disease would run its course.  Every time a different symptom came up I found myself really searching for help and answers.  The Mayo Clinic had little information, about treatments, however they did offer suggestions once the disease progress to a certain point.  I prayed and asked God again to direct me because I did not want to get to the point that the Mayo Clinic described to me.  For, a couple of years things seemed to stay the quiet, and God gave me strength to manage the symptoms I had been having.  (I will pick up here next time).
Monday, April 1, 2013

Three Weeks

I’ve been home now from Chicago for three weeks now, after undergoing a stem cell transplant on February 27, a month ago.  I will admit that this is a process that is going to take time to get a routine rhythm going.  My family has covered me as long as they could and now with the help of the Lord I am doing it.  God bless Rida, Kitty, and Mother who put their lives on hold to be sure I could live the best life possible during this transition.  Joshua and Dee unfortunately don’t get off that easy they still have to deal with me daily, they don’t seem to mind that much as long as I am home. 

So much emphasis on infection and safety until there is very little time for me to blog.  I felt like I needed to catch things up so that I don’t feel so overwhelmed when I have the opportunity to blog.  As far as infection goes my orders are to stay away from clinics, hospitals, day care centers, and any other public places where people could be sick.  I cannot be around anyone that is aware that they are ill, or has been ill.  If out in public I wear gloves for my protection, I am not allowed to hug/kiss until my immune system is built up again, so hard because I am a people person, and I work hard at loving people and hugs are a part of my love language (on hold for a little).  I am allowed to go out in public now, however not at peak times when there may be large crowds (Easter service yesterday an exception). I have been encouraged to slowly get back to what a normal routine is for me.  The safety issue is as serious as the infection issue is because of the fragile, weakened state the chemotherapy and the transplant left my body in.  It is a welcomed everyday chore to get up and get myself ready for the day whatever that day holds.  I have found that every day is different than the one before, and I have to take each day for what it is worth. The first week I was home it was all I could do was get used to being home again it seemed like everything was so foreign, my bed was the first wake-up call, I was used to using the rails on the hospital beds to turn from side to side, no rails on my bed here at home slowly, I’ve made some adjustments and am doing fine at home now.  The second week I spent figuring out medication, and reporting my B/P, and P to my doctors who were trying to regulate the medications. This past week, I’ve noticed I get tired very easily, so I take frequent rest breaks.  What is good about the breaks is that I recover quickly.  I have pinpointed the areas that I need work and what I’ve found is my overall body is weak and so I am starting with strengthening my core.  I have been evaluated for o/t and p/t but I know that there is only so much they can do the rest of how well I recover will be determined by what I do.

My overall goal remains the same, to get back on my feet, bring awareness about this disease, and finally set up a foundation in which anyone that needs a particular treatment, and does not have the means there will be means to help them. While going through my process I also hope that my experience will help another person dealing with Devic’s Disease experience a little easier.  I hope to encourage, and inspire others to remain hopeful and to keep searching until there is a cure.

The only way the FDA will approved this and other treatments for Neuromylitis Optica (NMO) aka Devics Disease is if those with the disease are allowed to take part in the research efforts.
Saturday, March 16, 2013

Discharged home

So the plan to be discharged Friday was in our favor, my white count was up and everything else was going along as planned.  After the usual morning hospital routine, I told my sister I didn’t feel well.  She came over felt my head and said you may have a temp, she put the nurse light on and my temperature was 101.6, from there it went as high as 103.6, there was no way I was going anywhere, until the fever subsided  
My girls have all had a fever at one time or another and you know they are punie looking, whiney, and you just know they do not feel well.  You do you all can to make it better but fevers do their own thing.  I do not believe I have had a fever that I can recall that made me feel so bad for three days.  They cultured everything they could, however they were unable to find a source for the fever.
We watched online church service, and prayed to All Mighty God that the fever would go away and stay away so we could come home.  God is so faithful; I do not know how people make it without Jesus Acts 17:28 declares that it is in Him we move, in Him we live, in Him we have our being, I cannot, don’t want to do anything without Him. 
Dr. Burt released us Monday we came home Tuesday PTL. The recovery will be long and sometimes difficult, but I got a beautiful card that will serve as my reminder …recovery is a process.  It takes time.  It takes patience.  It takes everything you’ve got and more to get through the process but you will get through.
From start to finish the Lord’s hand has been on this transplant.  From not knowing if I was a candidate, to not having insurance coverage because this has not been FDA approved, each, every obstacle that came up the Lord made provision.
I’d like to say that because of God’s provision this was a piece of cake,  it was not there were some very cloudy days and sleepless nights but I am so glad that I was able to remind myself that Jesus has already bore my sickness and disease, and by His stripes I am healed.  I know that there is purpose for my life and there are those hopeless, helpless ones living with this disease that do not know about a transplant, and if they did they would not have the resources to have the transplant.  From the transplant team point of view without enough of data from actual transplants then there would not be a FDA approval. As I am recovering join me in prayer for God’s direction to be the voice that cry out for Devic’s Disease and other rare Autoimmune Diseases.
Friday, March 8, 2013

Best Day

Transplant Scripture (sent from Randy Cameron)

Philippians 2:27

New International Version (NIV)

27 Indeed he was ill, and almost died. But God had mercy on him, and not on him only but also on me, to spare me sorrow upon sorrow.

I shout every time I confess this word…

+8 day

Able to understand the cycle (refusing to accept it) the fever of unknown source causes the dehydration, drops B/P causing weakness, and then the next three hours recovering.

The pass three days the cycle has been continuous …. There is a time and a season for everything according to Ecclesiastes one cycle today, recovered in about an hour GLORY TO OUR GREAT GOD.

The day was so productive; I was able to shower, and lubricate this covering over my muscles and bones that is most commonly known as skin, so thankful Mary Kay products.

Went to the isolation rehab center and worked for 45 continuous minuets.  I know pretty impressive huh.  Spoke with my Biglil Brother who has a way of letting me be me … he had me laughing which is good free natural medicine. My middle sister called with an update on my brother in law who is recovering from a heart attack and stroke (he is their Music Minister at their church) we had a good visit and I was able to encourage her (I was so pleased that even where I am the Spirit of God can use me) agree with me for his healing Kenneth Rumper Sr.

Another blessing graced my room later Jeni the Transplant Chaplin, she was apologetic about not being here to bless the cells before transplant, I assured her God was totally in control and His divine appointment was best. We talked about how the physical issues will seep into our spiritual being and cause doubt, fear, and a sense of loneliness.  She reminded me of Psalm 23 very comforting. We had to watch my sister’s service online they live feed, and we have also had the privilege of going to our vimeo and our service because there are no Christian channels on the hospital TV. We gave her information, she was thrilled she said many people ask for resources and she has some to give Yay Dave and the Crew.

One more thing up late watching the news last night (thanks to steroids). Remember I am in Chicago (which doesn’t matter news for me ends after the weather no matter where I am) I’m wired so I watch the entire sports from hockey, to basketball, and everything in between, and then the sports guy strings me along he says you want to make sure you come back after the break for an incredible story so now I am talking to the TV to hurry on with their commercials. The story comes on about a women diagnosed with cancer with seven children who wins 20,000 my sister and begin to pray thanking God for His provisions but understand the cost of medical care will quickly consume that 20,000. I lay down to sleep. My Soldier Sista for the Savior Susan called and we go through our chatty routine, I give inside updates she gives me outside updates, and we think ok is there anything else and she says one that blessed me and she starts the sports guy story … I say oh I saw that last night she says well you know who that is I say no she says that is Hutch’s brother … WOW

 This has been the best day since having the transplant and we believe for more of the same.
Wednesday, March 6, 2013

One week Transplant Old

I was made aware that my blog post have not been posting...(spoke about my lack of being techo before), and those post were not saved so let my monster blog marathon begin ... I thought that I'd finish several projects,blog, sort my nicknacks with all the time on hand, nothing could be farther from the truth.  Each and every day has it's own happenings and we are along for the ride.  For example today started with me thinking about Lakeside Baptist Church and my Uncle Chicken singing

Oh, to be “Kept for Jesus!”
Kept, by the power of God;
Kept from the world unspotted,
Treading where Jesus trod.

Oh, to be “Kept for Jesus!”
Lord, at Thy feet I fall;
I would be “nothing, nothing, nothing”;
Thou shall be “all in all.”

Oh, to be “Kept for Jesus!”
Serving as He shall choose;
“Kept” for the Master’s pleasure;
“Kept” for the Master’s use.

Oh, to be “Kept for Jesus!”
Kept from the world apart;
Lowly in mind and spirit,
Gentle and pure in heart.

Oh, to be “Kept for Jesus!”
Oh, to be all His own;
Kept, to be His forever,
Kept, to be His alone!

and looking around seeing the older people crying ... well I did not understand then but I do now what a joy it is to be kept by Jesus. Such a peaceful time, prayed, read my word while waiting on the transplant team spiked a temp that took the entire day to break. Fever comes in at #3, Cytoxan #1, and Neuprigen Injections #2.  After such high temp for so long it is really easy to be completely wiped out I remember feeling this same way two days ago and relied on Isaiah 40:29 that when I am so weak He (my Keeper) will increase my strength.
Transplant team comes in go over the process today is +7 I am one week transplant old so funny I am cracking up right now because a little while ago Joshua called to tell me my AARP membership info came in the mail today. We expect the white count to go up at anytime is what the team say. 
I am so ready for that and my everyday confession is ..
My immune system grows stronger day by day. I speak life to my new system You have given me.  I forbid any confusion in my new system.  The same Spirit that raised Jesus Christ from the dead dwells in me and quickens my immune system with the life and wisdom of God, which guards the life and health of my body in Jesus name.

Friday, January 11, 2013

God used You

I have a body full of stuff to say but small bits of time here and there to say them. Let me first start with a mighty word of God.
Even so, let your light shine before men; that they may see your good works, and glorify your Father who is heaven.
For all of you FB sisters and brothers (many of you do not know me, nor do I know you) who allowed your resources to be used collectively to make up the 30,000 for the transplant may you reap what you have sowed over and beyond what you unselfishly gave to the Glory of God. All of you will be happy to know that the recommended amount to schedule the transplant has been recieved by the hospital. The transplant will happen because of your obedience to give.
Now one more thing (at least for this post) for those of you that are not sure about miracles let me just say that the fact that I am here typing is nothing short of a miracle not to mention raising a crazy amount of money in a short amount of time (when the financial experts say how bad this economy is and how one can afford to give). As far as the medical miracle goes stem cell transplants are being used for all sort of illnesses, and disease a miracle indeed.
I challenge you all to continue to avail yourselves that God will use you for the purpose He designed you for. As for me I am in a new season and it is difficult at times because I am so used of God using me like He did before. I am having to learn to let go of the frustration because I am not what I used to be instead learning that God is the one who validates me that there is a lot of purpose for me to fufill, and guess what doesn't matter how it looks, or if I take more time to get to the matter ... as long as it Glorifies God I'm good with it. I won't be wasting any more energy (none to waste) or time on anything else except it brings Glory to God what about you?