My Platform NMO Rare Disease

Friday, September 25, 2015

Friday Feature

May HE give you the desires of your heart and make all your plans succeed. Psalm 20:4 NIV

Wrapping  up the work week, and doing something different with the days of the week, let's go out with a big bang...there isn't a better choice than my oldest daughter.


Celebrate with me the most ambitious, beautiful, valued, confident talented young lady's I know.  When she was little I daydreamed a lot about what she would become.  I'm so thankful for the amazing, incredibly, gifted young lady she is I could not be any prouder than I am of her.
Praying that God allows her to have many more birthdays.

Who is your feature?

Glory to God great things HE has done!!

Thursday, September 24, 2015

Thursday's Thrill

“Being confident of this very thing, that he which hath begun a good work in you will perform it until the day of Jesus Christ.” Philipians 1:6 (KJV)

Today's theme is what are  you "thrilled" about... you know what/who brings you joy?  I have so much to be "thrilled about, I am alive, I feel well today, and am learning so much lately.
I am "thrilled" to the max about this journey, and the fact that many will benefit from it.  My Pastor's messages for some time now have come from Revelations, interesting enough so is this semester's study in BSF.  This week's lesson reminded me of the confidence we have as believer's about eternity.

Glory to God Great things HE has done!

Share your thrills.

Wednesday's Worth

"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 NIV

Do not be afraid, land of Judah; be glad and rejoice. Surely the LORD has done great things! 
Joel 2:21 NIV

On Wednesday think about something worth sharing.  I want to share an opinion, perhaps you've wondered why good people have to suffer.  I've thought about this many times.  For now I'm fine with the fact that I do not/never will control anything in my life.  I am confident that all things work together for good (Romans 8:28).  Jesus tells us we will have trouble in this world (not if we have trouble expect it) but we are to stay calm ...Easier to say than it is to do, I know.  
It has been very difficult and there are many days it takes everything within me to keep moving.  I made a intentional choice to see the good coming out of this journey.  I've been asked many times how do I manage, my response is I have made my choice.  
I overheard someone talking about me talking about what I have been through and how I need to just let it go .... I'll be talking about what the Lord has done for me until I'm unable to talk. I don't want to get over it.  I believe in good coming out of bad.  Let me be clear as I have said before I won't be the lady with my hand flagging down God to pick me for the next miracle HE wants to bless, but  rest assuredly  knowing all the good coming from this journey far outweighs the bad "something to shout about."  This journey is about so much more than me.  I'll tell this story again and again, for His GLOR!!!.  Some good is already happening, and I believe the best is yet to come ... stay tuned. It is all about HIM. 
The worth ... life is a journey, God is in control, knows what HE is doing, it's all good. You choose what you want to do with it, nothing we go through on earth will compare to eternity spent with HIM make sure you have a relationship with HIM.
Glory to God Great things HE has done !!!
Now your turn.

Tuesday, September 22, 2015

Tuesday Truth

For you created my inmost being: you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 
Psalm 139:13-14 NIV 

Trying new things, from now until directed to do something else on Tuesdays let's post something that is true to your heart. The truth can be a life principal you try to live by, a scripture, the thing I'd ask is to make it positive, inspiring, or encouraging,

I'll start with mine,  a true thought from the scripture above: I live my life intentional knowing how I was created. I remind myself of this often because it is easy for me to get caught up in being what others think I should be. I'm ok the way HE created me.

Please leave a comment
Monday, September 21, 2015


Your ears shall hear a world behind you, saying “This is the new way, walk in it, “whenever you turn to the right hand or whenever you turn to the left.”  (Isaiah 30:21 NIV)
“But the Comforter, who is the Holy Spirit, whom the Father will send in my name, He shall teach you all things, and bring all things to your remembrance, whatsoever I have said unto you.”
(John 14:26 NIV)

Admission, my intention was to blog about the upcoming changes to this blog yesterday, however there are twenty four hours in everyday.  I'm sure I'm the only one who struggles with time management.  I am doing the best thing I can do about it now, the hours ran out before I could complete the task of the day ok.
I am  so thankful I am still teachable.  Please be patient and kind as I will be following HIS lead. Oh for those of you laughing and talking about how bad I am at blogging .... motivation at it's finest ... to rely on HIM, "He's not finish with me yet," Bro. Randy.  Some of the best things I've learned came after making a mess first.
All of that to say the blog is going under construction.  I am learning to be humble, and draw from those God has raised up on my be half, and unfortunately, I have a lot to learn.
Let me admit that I like learning but am having a bit of a problem with the instructor choices the Lord is making lately. A couple weeks ago my almost 14 year old instructor was helping me with some ways to keep the "peoples" engaged and I said to her "what peoples" she said "mother you have people that will visit your blog because of your experiences and what your interests are "those people." I thought to myself that lil girl may be on to something.  NMO is a rare disease so in my mind the audience (the people) may be small, I learned that is a "no no" bloggers should have large following, who knew everyone but me.
Another relentless instructor, (celebrating her birthday this week), spoke with me about my ideas for such a time as this, the journey and what we know to be a part of why HE created me.  She said "mother don't expect people to lose sleep, and be hyped about your blog," that is your job Moma."  You are the one about to release all the pressure stored in that pressure cooker of yours about this journey and the ministries coming out of it.  Take ownership because there is no passion for this journey like yours Moma."
To line up with the above advice, the Lord confirmed His word through two men Bro. Randy, and Doug Booker one said "leave up to God what HE wants to say through you" and other one said "God has specific plans for me, but HE will be working from His blueprint (if I knew it all, had it all there would be no need for HIM). 
Everyday we are planning a theme.  
From  now on, Monday is Music Monday,
Please share a song, lyrics and any other thing you'd like about music.  One of the things that saw me through some dark days and the way I choose to celebrate is through music.  I want to thank Melissa Brown for Timesia's hospital cd's volume 1 & 2 (and my last one from the link) click the link to listen to one of my favorites.  Please don't forget to comment.

Glory to God great things HE has done.

Friday, September 18, 2015

How does support of family and friends look?

Bear one another burdens, and so fulfill the law of Christ. (Galatians 6:2)   Greater love has no one than this, that he lay down his life for his friend. (Proverb 18:24)

One thing I leaned from a bible study I recently attended at my church is no longer is taking out time to rest a good thing, but it is absolutely essential to be well.   I've given myself some time away to enjoy some of the things I like doing crocheting, visiting the sick, helping Veterans through the daunting red tape to get the help both physically and emotionally they need, and helping women look and feel their best no matter what season of life the may be in. All of which are making an impact on building up the Kingdom of God.
Back writing today, I felt a nudge that gently reminded me that it is imperative to continue what I've started to completion. For a couple of reasons, the first is the fact that I know others will benefit from these experiences, but most of all everything this entire journey points back towards God.   
I'm sure that I've mentioned that the only way to go through what I've gone through is with "Jesus on your side" (words to a lil song I wrote many years ago), and the loving support of family and friends. One very unique thing I'd like to say is outside of the outward appearance, my family and friends look and act so much alike, and I am so very thankful for each of them. Another fact is it safe to say my family and friends go hand and hand, and have become interchangeable, such a beautiful experience.
This post is to tag some recently submitted videos to the blog.  Let me just pause and do a lil shot/scream out to Dave Roberts for all of his hard work he has done. I have a new plan for the blog starting Sunday, so I'll  brag on him, and Kelley Stamps, for putting the blog up, and helping me to maintain it.
Some of the videos posted were taken last year, the Lord allowed Joshua and I to host Thanksgiving here in Northwest Arkansas in our home.  This is one of my favorite family traditions.  We've done Thanksgiving this way for as long as I can remember.  We rotate where we celebrate, and the last time it was supposed to be here I wasn't physically able to host it so this was a huge blessing. The other videos were done earlier this year.
After viewing the videos, I felt like I needed to explain we made it to this point heavily reliant on our faith in God, and the support of each other.  Having family and friends isn't the same as having the support w/o asking of family and friends. Knowing there was never a reason to call because family/friends were here and still hang around to date.  I have a hard time communicating what I feel when I think of the family and friends God surrounded us with.  You realize early on who will be there for you, and at times I was really surprised, but am so much better for knowing.  The scripture that comes to mind is Philippians 4:19 ... and God shall supply all our needs according to His riches of glory in Christ Jesus did not disappoint. 
My immediate family is very unique, in that we fight about which one of us is going to do the thing that no one wants to do, and in most families it is the other way around.  My father was/is so very strict on us (now suffering from dementia very evident in his video), and my mother let's just say I would be "whipped" with whatever she could put her hand on (and they both agree I needed all the discipline I received growing up).  We have a blended family I am the middle girl of six girls and we have one older brother and the baby of our family is my other brother.  As with any other family we have our ups and downs, there are the intellectuals, nutty, humorous, serious, sweet, easy going and down right mean in which our family can be defined (have a good time figuring out which one is which).  Throughout this journey there were some role changes in which confirms God's control, and how His love was the constant that kept us. My extended family pretty much operated in conjunction with my biological family and we all share the common denominator Jesus and His love for us.  
There were many who were going to record but we had a time limit and schedules wouldn't afford everyone the opportunity to video, I want to mention how much of a blessing to be surrounded in love, every need supplied. 
These videos were posted to encourage other family and friends going through a similar journey.  It is easy to see we are ordinary people with many imperfections.  One thing that defines a true family in my opinion is learning to overlooked each other faults and love each other through.  We don't suffer from spiritual amnesia like we have it all together, but admit we are all work in progress. 
Everyone that took part knows first hand what this journey is about and wanted to share from a sister's point of view, a mother's point of view, child's point of view and from a friend's point of view and others to give hope that we made it with our faith and what God did for us through each other can work the same way for you ... trust HIM !!!
To God be the Glory Great things HE has done.

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
Friday, February 6, 2015

First things first

He that loves not knows not God; for God is love. 1 John 4:8 NIV

So my intention is to raise awareness about Neuromylitis Optica a rare Neurological disease that I received a transplant for, and that still is my number one goal. However I have to admit that I have always been fascinated by the way the human body was created as well as the way it functions (only God could hook something up from nothing) Glory to His name Great things He has done.  It is a fact that if one organ is not functioning properly it effects the entire body (side note so so thankful that throughout this medical journey my doctors have told me that my heart is as strong now as it was at age 25).  I've not been told how or if NMO has had any affect on my heart but I've intentionally made some life  changes that I'm sure has contributed to my heart health. There are heredity diseases that run in my family such as high blood pressure, diabetes, thyroid, arthrosclerosis,  and coronary artery disease, for which I cannot do anything about.  After reading about each of them I understand that I have to continue making  deliberate efforts to keep my heart as strong as possible.
February is National Heart Awareness month and that's why all the heart talk.  Here are a few interesting facts according to the National Heart Association that may be helpful ...
  • Often thought of as a man's disease 1 of every 3 women die from heart disease that equates to one woman dying/minuet
  • Smoking, high blood pressure, and uncontrolled diabetes are major factors
  • Only old people have heart disease
  • Called the silent killer 67% of people that die from a heart attack either ignored or had no significant symptoms
These are some easy changes the American Heart Association recommends (Simple 7)
  1. If you smoke STOP
  2. Reduce blood sugar
  3. Work on maintaining a healthy weight
  4. Keep blood pressure under control (hard one for me I like salty crunchy that's all, no judging we are talking bout love anyway)
  5. Stay active keep it moving (after being down over a year sometimes I go overboard)
  6. Eat well fruit, veggies, and lean meats
  7. Control cholesterol
By no means am I pretending to be a medical doctor, or health advisor. However I will say the best thing to remember is to seek medical attention immediately at the onset of any unexplained pain, or discomfort, it could save your life.
Today is wear red day, the color red represents strength, joy, and power symbolizing the fight of women to end heart disease.  As a Mary Kay Consultant, I am offering all red colors with a 10% discount the colors in satin finish formulas are Really Red, and Red.  In the true dimension formula the colors are sizzling red and, firecracker red contact me for more information.
 I realize that men suffer from heart disease and on a personal level my father had a heart attack and I am thankful for the fast action of my sister and brother that our daddy is still here with us today.
Finally, on the matter of love I personally think love is often underrated, especially when I look at how I love ... scriptures from the bible on love is the gage I use and understand how far I am from the love that Jesus teaches about, oh to be like Him (for now I'll keep on working on it).
Singing ...Yes Jesus loves me the bible tells me so