Celebrating a life well lived

Just had a much needed talk with my sister from another mother. Our conversation ended reminincing about one of the dearest people I've known her mother, Mrs. Joann Williams. We weren't able to be there in Philidelphia to celebrate her life but I wrote this tribute ... I don't think Cynthia will mind me sharing if she does oh well (she shouldn't have rushed me off of the phone to get in bed!). On a serious note I know there are all kinds of pain, on many different levels in this world today. Most of what I wrote 5 years ago is more applicable now than when I wrote it then. I realized after reading this to Cynthia that this was dedicated to Granny but could only be used by those of us who are alive. I'm taking a couple of doses of this myself and I hope you will too if you need to...

The Hart, Callihan, and Minniefield families’ tribute to our beloved

Jo-Ann Williams affectionately to us “Granny”

Love is patient, love is kind. It does not envy, it does not boast, it is not proud.  It does not dishonor others, it is not

self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth.  Love always protects, always trusts, always hopes, always perseveres. 1 Corinthians 13:4-7 (NIV)

Learning of Granny’s passing a few days ago was one of the hardest days for all of us.  As difficult as it was in a weird kind of way the day also caused us to rejoice. Yes, she is now free from the bondage of the dreaded disease Cancer.  The thought of no more pain, or suffering somehow provided a calm sense of unexplainable peace for us.

The Lord allowed our pathways to cross thirteen years or so ago through our children and we’ve been family from then until now. Cynthia, Jeffery and Girls we commend you all for a job well done taking care of Granny during her transition.  We wish we could be there with you now in person during what we know is a very difficult time.  Prayerfully you all feel our presence, especially now, as you are celebrating Granny’s life well lived. Family for all of us is significant, and Granny adopted us and loved us as her family almost immediately.  She was there with my mother, when Diana was born, but we really grew very close after an auto-pedestrian accident, in 2001.  Granny took care of Diana who was only six months old at the time, me, all while taking care of Alex and Ashly. She allowed me to be angry, cry, and a couple of times Granny allowed me to have a meltdown fit, but then she said like only she could “now that is enough of that you need to get yourself together and get on to something else.” It wasn’t long after that I recovered and was able to go back to work.

She invested so much into me, Joshua, and our girls lives.  We are better because of the time and energy she spent pouring wisdom, and the wealth of life long knowledge into us. Granny exhibited the grace of God, His unmerited favor, and had the ultimate respect for every human being. She was such a gracious, and proper woman who went out of her way to be kind. Granny meant so much to us. The above scripture about love describes the love Granny shared with so many people. She was like a second mother, a grandmother to my girls, a teacher, mentor, and Granny was my friend. Our world would be so much sweeter if there were more people like Mrs. Jo-Ann Williams (Granny).

The bulk of our conversations was either about God, or our family.  She was a woman of great faith, and she lived a life that so pleased God. We shared favorite foods such as taco salad, soup, beans, all things italian, and seafood. We had some beautiful meals together making life long memories. Granny was an incredible gardener too. Now make no mistake about it she was also strict on the girls (and me too) when she needed to be, “keep the main thing the main thing” she would often say, and we knew to get right back on track, she knew her job, and did it well.                                    Likewise, teach the older women to be reverent in the way they live, not to be slanderes or addicted to much wine, but teach what is good.  Then they can urge the younger women to love their husbands and children, to be self-controlled, pure, busy at home, to be kind, and to be subject to their husbands, so that no one will malign the word of God.      

Titus 2:3-5 (NIV)

We celebrate you Mrs. JoAnn Williams, and know for sure we will see you again.                                                      A good name is better than fine perfume, and the day of death is better than the day of birth.” Ecclesiastes 7:1 (NIV)

I’m so thankful for the opportunities we had to demonstrate how much Granny meant to us, we loved on her every time she was around.  We feel sadness, but we maximized our time when she was alive, we have no regrets.  We are positive she knew our great love for her.  Family, life is short let’s hold each other accountable to live every day to the fullest …and challenge each other to deliberately love hard with out excuse, not contigent on if it is recieved …                                                          

“Finally, my brethren, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely whatever is admirable if anything is excellent or praiseworthy think about such things. Philippians 4:8.” (NIV)

Important learned lesson from Granny, as a final take away, be intentional about living your life, you only have one.  Don’t waste valuable time, and energy, instead diligently work to leave a positive impact on this world.            Live well until you die!!  Go on sweet Granny take your rest.

Our Witness: I'm back

Our Witness: I'm back: It's  been way too long since blogging, maybe I can get and stay in the groove.  Lots of things have happened, I'm still working har...

I'm back

It's  been way too long since blogging, maybe I can get and stay in the groove.  Lots of things have happened, I'm still working hard at what I believe God has purposed my life to accomplish.  This has been the hardest job ever second to being a mother. I continue to push through the dissapoitments, discouragement, and defeat giving God the glory as I run this race. 
If I had been told after going through all I have that I would be in the situation I am in today I wouldn't believe it. 
Today feels alot like waking up in Little Rock after the doctors at Mercy couldn't figure out what was going on.  It was cold, I was hurting, and all alone.  There was chaos and seem like everything was going in slow motion. I was so scared of what was happening, but more so that I didn't have control over anything.  I could see my legs, hips, feet, arms and hands but they were heavy and uncontrollable no matter what I did I couldn't get my body function. What made this worse was how concerned the doctor was. His face had question marks everytime he entered my room.
After wrestling with every thought that came to mind with no avail I remember saying, "God Almighty do You see this?  Really this is happening after everything that has happened in my life? Why?" I wish I could say He answered me, and everything is great but that is not the case. There have been many times since then I felt like I was close to the answer, and then there are days like today, I feel like I will never know the answer and how none of it make sense. 
Scripture helps me one in particular is Job.  Some things I'm reminding myself of today is He has never left me alone  Heb. 13:5 He will instruct you and teach you the way you should go  Psalm 32:8. In my case I have to have exhausted everything I know to do that's when I'm ready to obey Him. I've learned God's character in the dark, cold nights, I'm burdened, full of fear there He draws me to Himself. As I ponder my own personal future, I see some things clearly while other things are a mystery to me. Then I remember what Job said. “He knows the way that I take; when he has tried me, I shall come out as gold” (Job 23:10). He knows the way that I take even when I don’t. He knows the way that I take even when I can’t see clearly.

Looking back, we find it easy to count our blessings and to see the hand of the Lord moving on our behalf.  So much has happened that we did not expect, we have to keep on going "it's all good"

Friday Feature

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


A VERY SPECIAL EVENT FOR A VERY SPECIAL DAUGHTER
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.

NAEAIDRIA

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'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 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

Teachable

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.

https://youtu.be/7S2jTLounyU

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.

Interviews of some very good friends and family!

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

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

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

"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.


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.


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.


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

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

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.

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.

The Journey

Chicago Post Tranplant Appointments

One Year Post Transplant Flu Appointment

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

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

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

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

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