My Platform NMO Rare Disease

Sunday, March 15, 2015

My Choice

But as for me, I shall sing of Your strength; Yes, I shall joyfully sing of Your lovingkindness in the morning, For You have been my stronghold And a refuge in the day of my distress Psalm 59:16

Made it to Chicago and back safe and sound, and am so grateful.  I want to thank each and everyone for the calls, text, and emails of encouragement, they meant so much to me.
So some of you have asked about the service last week. I shared right before the message.  There was a couple of things that I was made aware of that weren't clear the first thing is I celebrated 2yr post transplant a couple of weeks ago, I jumbled that sentence up.  The second thing was what the green ribbons stand for. The flowers ribbons, and bands represent Neuromyelitis Optica awareness month (March). Here is what I shared ...
It’s in HIM we live, we move, and in HIM we have our being. Oh magnify the Lord with me let us exalt His name together...O come, let us sing unto the LORD: let us make a joyful noise to the rock of our salvation. I honor and praise The Lord today for this life HE has afforded me to live. I stand here today only by HIS strength, grace and mercy I am truly grateful.
I want to thank my husband for staying the course during what has been to date the most physically and emotionally draining time in our marriage. I want to thank my Mother, Rida, Kitty, and my girls for making the choice to put their lives on hold in order to do all they could to help in what seemed to be a helpless situation. Pastor, Dr. Byrum and every brother/sister of this great congregation there isn’t time nor do I have the energy necessary to express the gratitude I have in my heart for every part each of you played during this journey.  Your love and support has been a motivating force, and strength essential to persevere through some of the darkest days of my life
Diagnosed with Neuromyelitis Optica a rare incurable Neurological disease, affecting the optic nerves and spinal cord several years ago in which I lost central vision in my right eye and experienced total body weakness due to lesions throughout my spinal cord is a testament of how Great and mighty our God is.  I think the severe, rapid; deteriorating condition of my body activated a determination resulting in what you see before you today.
The Lord allowed me to read an article while rehabilitating about a trial transplant in Canada and after researching He lead me to a similar transplant being performed in Chicago.  God alone eliminated every obstacle and I celebrated two year post transplant a week ago.  
I leave for Chicago in the morning for tests, and other procedures. These studies will determine whether my case will be considered a positive result. Prayerfully the FDA would consider transplant therapy as a treatment for NMO.  It would be a blessing to be a part of finding a cure for NMO, but I realize that between now and then there are other things that God has allowed me to go through and take a stand for.  I feel an urgency to Advocate for change and bridge the gap between insurance providers and other regulators to understand what families have to endure when 24hour care is essential for the well-being of the patient. I'd like to see insurance address how they can become humane and more caring.
At the end of a physical fitness program I was a part we were to write down one word describing our journey my word is destiny. I believe everything suffered will be used for the purpose God created my life for.  I believe the secret of salvation isn’t that I found the Lord but that the Lord found me, and I realize my life is not my own.  I wouldn’t have chosen this arena to play in but almighty God has the final say when we surrender all to Him. March is NMO awareness month which explains the ribbons, flowers, bands, and tact pins to raise awareness. I hope to return from Chicago with a green sign indicating positive results moving closer to ending NMO. In my journey given all the pieces it would be unbelievable story without God writing it. It is a story of the power of prayer, complete dependency on God, and an example of what total submission looks like.  To God be the Glory great things He has done
Here is the link to watch the service

I've been trying to rest since coming back, last week was exhausting from start to finish, but haven't been able to yet. I was glad that the hospital campus was four blocks away from the hotel, so I was able to come back and take a nap in between some of the appointments. I had been trying to wait until all the results of the tests to share but I don't know how long it is going to be so here are the things we know now.
No active inflammation of the spinal cord shown.  The inflammation from previous exacerbations left a lot of scarring throughout my spine.  The cervical section shows spinal cord thinning which the Neurologist said could be the culprit for the loss of sensation, dexterity, balance, and my walking being prohibited.  He doesn't expect any changes.
Preliminary results from the eye exams show no new vision lost from previous examination, that the left eye is doing well, Glory to our Great GOD.  However, the Ophthalmologist diagnosed me with Glaucoma and color blindness in both eyes these are minor conditions given my history. He prescribed some medication and I was able to get the medications and start them. The pressure in both eyes has responded, praise the Lord. This time I had to also see an Audiologist, after his test and examination he determined that I have hearing lost(another thing affecting my walking) and a constant buzzing in my ears, he said to schedule an appointment locally.
After two days of diagnostic testing (I think they made up some of those test too) it was time to see Dr. Burt (transplant doctor) he did his examination.  The NMO titer test read NORMAL first time since the transplant..  He said we cannot know for sure if the negative blood test means the disease is completely gone but it being normal was a good thing as far as I know. He told me that the specific publication from the study I participated in is at the halfway mark before it is published so that others will know the outcomes.  At that point other doctors will try transplant treatments on their patients. The more positive results is what the FDA needs to approve it.  At this point comparing then/now I've had a positive result. The other doctors all did their exam and were all amazed at the progress. They all agreed that I should keep on doing all that I can to stay strong. 
I have been somewhat down about the trip since I got home because of my , expectations, I am feeling better now.  I am destine to be all that God has created me to be.  I'm not going to throw in the towel yet, but I will admit this has been a long and hard journey.  I have been so encouraged by my family, and friends cards texts, and so on that I am ready to do what I've done to this point.  I will deliberately live the best life I can while honoring God. 
I want to encourage anyone that maybe going through a difficult time not to give up keep doing what you know to do.  God already knows why HE created you and NOTHING will keep that from coming to pass, don' be afraid. You are equipped with all you need knowledge, strength, resources,  and favor to make it through, your best is yet to come.

One of my go to favorites
I will sing praise I will lift my voice I will sing praise, I've made my choice I will sing praise in all I do I will sing praise to you.  No matter the storms that come my way, no matter the trials I may face you promised that you would see me through so I will trust in you