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 http://new.livestream.com/fbcbentonville/events/3869012Some

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
Monday, November 24, 2014

Thanksgiving

I'm feeling the presence of the Lord really strong.   Living the life He has given me has taken precedence (I'm busy) lately, I sing a song everyday somewhere everyday (ASAD ministry Psalm 104:33), and my other jobs whew ...  I am so grateful for all of my blessings and at times (right now), I am overwhelmed.  Don't get me wrong I have challenges that I face daily that could quickly knock me to my knees but the good continues outweighing the bad, so I forward march.  I've come to accept that everyday will not be a sun shinning day, but after the rain we enjoy those beautiful rainbows, I welcome the rainy days (I still don't care for the thunder ; ))     
I am hosting our families' Thanksgiving Traditional dinner for all those who would come, and stopped for a minuet to worship God for bringing me this far. I feel good today, my body feels so strong.  I am able most nights to get in my bed, and sleep like a normal person.  I'm functioning I do things a little bit different but I get them done.  I was able to get the groceries (it took 3 trips to the stores) but the Lord blessed me to do it.  I know none of the things I mention are major deals but try to do them when you are unable to think, and you are in a wheel chair with limited mobility. Hey trust me it is a major deal.  I had a few minuets in between washing "the good dishes" and wiping down the cabinets to come try to express how grateful I am for all the many blessings, HE has given me.  The best of the blessings include my relationship with God, my family, extended family, friends, and our health
Love, Peace, and Happiness to all of you.  Happy Thanksgiving
Saturday, September 20, 2014

"New Season New Day"

These are the appointed times of the LORD, holy convocations which you shall proclaim at the times appointed for them. Leviticus 23:4 KJV

I have been needing to blog, and have had so much to blog that I and overwhelmed.  This rollercoaster of life hasn't changed in the least, however I have been involved in what I believe is taking me from this season of life to the next. For most of my life, purpose has been determined by whatever is happening at that particular time.  Reflecting back as far as I can remember the motivating force for way too long was to please people.  Growing up, and even into early adulthood my parents relatives, friends, let me just say people in general.  I wanted to be whoever I needed to be "fit in".  During my time in the United States Army, being so far away from family was when I think the awareness of  "I'm ok" the way God created me came about.

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14 KJV 

Even so seems like I wondered around life trying this and that, taking on other responsibilities that had nothing to do with me before arriving here. When I started the "Live Strong" program in my mind I was fulfilling the doctor's recommendation, though after reading the material I did not see how I fit in.  One thing I kept thinking to myself is at least I would have a little more time before going out on my own to develop a "new daily exercise program". After the first week I realized that the program was about more than developing a physical program, turns out to be the stepping stone for the next season of my life.
Timesia Hart

Everyone in the class noticed that I was the one with the most physical issues, and it is difficult to admit, but I was kind of irritated that I was put on display again (seems to be a part of the plan).  It took everything I had to get through the initial physical tests, and I had to leave my paperwork to finish after the class time.  When you are paralyzed from shoulders to feet everything is included my writing is just getting to a legible point (therapy really does pay off).  It was clear now why my trainer made me wait for the next class to began, even though it had just started.  This would be a total body transformation.

Timesia Hart's photo.
It is now as I am reflecting how God always has a plan and listening is crucial to be able to join Him where He is working.   For me it is there that I find purpose to continue with a happy heart.  My purpose has changed from time to time but the constant is God.  I've chased after things to keep up with what others were doing but that never really ended well for me.  I'm me and I am the only one created to do me. 
Neuromylitis Optica has physically, and mentally changed my life.... in a positive way

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 NIV
 God gave me the ability to minister in song, NMO is the motivation, and people needing hope is the inspiration. I go back to wanting to make people happy but when I find myself there, I do an inventory to be sure that I am lining up with what the word of God teaches, regroup and move on.
Some exciting "New things are happening in my New Day".   There is no hiding I experienced some very dark times over the past three years and even before that, but it took all of that to get here.  No trials, test  ... no testimonies. We all have a purpose, a "job" to do I was distracted trying to do someone else's job, God's grace and mercy bought me to where I think HE can be glorified through my life.
Be encouraged to know that HE created you and threw the mold away.

"Before I formed you in the womb I knew you, before you were born I sat you apart; I appointed  you as a prophet to the nations". Jeremiah 1:5 NI,V                       

God leads, guides, because He created each of us specifically to do what only we can do.   Follow Him and by doing that I've found most people are satisfied, and it illuminates the "Mrs. Fix It" mentality for me. Doing me by God's design requires a lot of time and energy, leaving little to no time for much else.

BLESSED. We laugh at how many people ask me on a weekly basis to take a quick picture of them with their phones and have no idea what we do for a living. Usually I keep my mouth closed, take the picture and smile as they say thank you but when Timesia asked me to snap a picture of her on her iPhone this morning it came with a simple statement. "I want to document what I'm going through." It was just vague enough that I had to ask (not that she expected me to) and her response came with buckets of tears. "I'm beating cancer" she said as her eyes welled up. Within minutes we were hugging as she told me about the last year of her life. It's been only a few months since Timesia was paralyzed from the shoulders down at the rapid onset of something called Neuromylitis Optica. Not exactly cancer - arguably more dangerous, definitely less known. Regardless the chances of her asking a photographer who is this involved in cancer awareness is slight and yet in her mind none of this is coincidence. Through tears and lots of laughs Timesia made quick friends with Melissa talking about church, God, and most of all how focused she is on living as a picture of hope to people who are given very little. When the Mayo clinic sent her home, told her to get comfortable and come to terms that her life would likely be short and completely sedentary she refused to accept that this was God's plan. I'm at a complete loss leaving the gym this afternoon trying to explain the joy this sweet woman has for life. Beautiful, strong, passionate and stylish outside of the gym, focused and excited inside it she is absolutely a walking miracle. If you don't take the time to meet the stranger next to you today, you may never know the miracle they're living, or the blessing they can be to you. I can perfectly imagine what my day would have looked like if I had not met Timesia, but it has most certainly been better because I did. Check out her blog for more info on Neuromylitis Optica and her story at http://ourwitness.blogspot.com
Don't delay you can start today ..... it's a new season and a new day!!
https://www.youtube.com/watch?v=lDUrIVGak-A&list=RDlDUrIVGak-A
Tuesday, July 15, 2014

Some old favorites

Wanted to go back on memory lane before really taking off with what my new normal looks like.  I will probably go back and  forth because I encourage myself when I look back on how far The Lord has bought me from. 
Some of these are hard to look at, because I remember what was happening when the picture was taken, and before I no it I'm there all over again.  A few of these were long before the diagnosis, and those can be difficult too because I remember when ... In order to stay focus I visit but do not allow myself to get too bogged down because I need every ounce of  energy to keep it moving forward.
Started a Live Strong physical fitness program last week, and am very excited.  I have many challenges my core is still weak, balance is not too good, and my walking is retarded because of the tone in my body.
Please check out the you tube, and leave a comment.
I'm making an effort to keep things current as best as I can.  Had a wonderful day today and am looking forward to the next day.
Glory to God great things HE hath done.


www.youtube.com/watch?v=VPDKhkJgRgA

www.youtube.com/watch?v=lMWY90vsAUs

                                                            My Honey and I Nae's college graduation
NMO no where on the radar

Health South after second exacerbation                               Nae and I Sept 2011 

Home 2012 Tee and I
2012  Bday celebration

April 2012 me doing Rida's  hair

Moma and Kitty getting ready to celebrate

Dee and I Easter 2012

Christi Cox UAMS 2011

My Man and I bday celebration 2012

Dr. and Susan Byrum
                                                                    Joshua and Dee 

Sisters Me and Kitty bday celebration

Celebration April 2012

      My Mother one of a kind
       Mrs. Ethel A. Minniefield
 
 
  
                                            Sibling Love (L to R) Baby Girl Kitty
Baby Brother John, Me, Tunie
Rida in front

Branson Spring 2012


        Hair after chemo before Transplant


Christmas 2012Tee, Dee, Nae and Me
 

Chicago I am a Transplant Candidate

Soldier United States Army 1982 - 1993

 

Praise Team Church Christmas 2012 
Tee, Granny, Dee, Me, and                          
                             Nae Christmas 2012
  

 
 my niece Chaniza, and I Christmas 2012
 
www.youtube.com/watch?v=VPDKhkJgRgA

www.youtube.com/watch?v=lMWY90vsAUs

Monday, July 7, 2014

End of old, start of New

2 Corinthians 4:16-18  So we do not lose heart. Though our outer self is wasting away, our  inner self is being renewed day by day. For this light momentary affliction is  preparing for us an eternal weight of glory beyond all comparison, as we  look not to the things that are seen but to the things that are unseen. For the  things that are seen are transient, but the things that are unseen are  eternal.

"Are you mourning over your own weakness? Take courage, for there must be a consciousness of weakness before the Lord will give thee  victory. Your emptiness is but the preparation for your being filled, and your  casting down is but the making ready for your lifting up.” – Charles  Spurgeon

Of late, I've wanted to blog more times than I can remember, I'm really trying to keep things in proper prospective. To be completely honest I get so overwhelmed about what this journey has been like many times, making it tough to blog.  As I type, I remember not long ago I was unable to type, write, or wash dishes due to the weakness in my hands and fingers.
I keep pressing on because I truly believe that through it all God will be glorified, the ones coming behind me diagnosed with this and other rare neurological diseases will benefit, if for nothing else that I never forget the power of prayer, and finally to encourage myself knowing that God has planned purpose for my life.
If I could remind myself of the last eight words of the above scripture the difficulty in my life would be greatly minimized. Though difficult to admit I have to completely turn this health issue over to God. It seems as if I'm doing fine and then all of a sudden reality hits reminding me of the things I so desire to do but am unable to do.  I feel such a void where dreams were so vivid before the exacerbations.  I realize that it is time to do away with those dreams and began new dreams.
 I start a new fitness program tomorrow and am very excited.  I've accepted the fact that there will be some things that I will be unable to do, but I will deliberately focus on the things I am able to do.  I'm looking forward to getting on with living.  This is the start of New.  My inner self is being renewed for eternity.

Glory to our great God great things He hath done.
Monday, May 19, 2014

Intentions

A desire to glorify Him
 "He chose us in Him before the foundation of the world, that we should be holy and without blame before Him in love, having predestined us to  adoption as sons by Jesus Christ to Himself, according to the good pleasure of His will, to the praise of the glory of His grace, by which He made us accepted in the Beloved."      
Ephesians 1:4-6
 Of late life has been closer to our new normal.  I began most mornings getting up dressing in gym clothes making our protein drinks. I head out the door to drop Diana my daughter off to school.  If it is a Bible study I have my clothes to shower and change into after my exercise.  At my one year follow up appointment I was advised to do a livestrong program before going out on my own starting with Palates or Yoga program.  I've enrolled for that and am waiting for it to begin in the meantime I have a program designed by my therapist and one of the trainers at the gym.  The new emphasis is strengthening, and balance as I continue to progress. 

Being prior military I am disciplined as far as working out, however I get discouraged when I am unable to do what I was able to do before all of this happened to me.  I'd like to not even think about what I used to do and be thankful that I am able to get to the gym on my own.  I am able to do a full workout, shower, dress and go on with the errands of the day is enough, but honestly I long for the other stronger body.  I continue working hard as I can, with a happy heart that I may honor God but it is difficult.
I've began the cleaning process as you can imagine the main focus has been getting back on my feet and to just manage as best as we could.  Now that I have a lil more energy I am taking one room at a time, reorganizing things to function more efficiently.  It is amazing how much things can be accumulated in nine months.  I believe in being a good steward over all of God's blessings, I think this is a form of giving Him glory.
Some new advances to report my handwriting/typing is continuously improving, I'm excited because I enjoy writing notes and haven't done as much because my writing hasn't been legible.  Typing is good, and is a huge part of the work environment.  I'm able to slowly return to some of my social groups.  I am back to working my Mary Kay business which is going to provide resources to pay the continuous medical bills, while affording me the opportunity to provide expert professional skin care advise on the #1 brand of cosmetics.  I am a licensed cosmetologist, and enjoy people so combining the two really makes me feel like I'm making a difference in the lives of others.
Everything I am able to do is because of the faithfulness of God, I'm never going to make light of that. As I continue on this journey, even though sometimes I struggle to get one thing done.  I remind myself of the days I was only able to lay looking up at the ceiling or the right or left I instantly resort to an attitude of gratitude. 
My intention is to continue to bring glory to God, it is different but I am glad that He looks at our hearts, and not the outward appearance.  I am in constant contact with the insurance companies, an advocate for NMO, accepting speaking engagements to bring awareness to Neurological Diseases, and other opportunities as the come.