My Platform NMO Rare Disease

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.
Friday, March 28, 2014

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!!
Friday, February 28, 2014

One Year post Transplant


Sitting for a few minutes looking back over this past year, completely consumed by the Faithfulness of God, I am so grateful.  From getting out of my bed in the morning until the moment I lay my head down on my pillow to sleep and everything in between happens only because of Him.  It is in Him I live, it’s in Him I move and have my being (Acts 17:28), and I am grateful.
I will admit that there have been and continue to be some hard days, but I try hard to focus on what He promised me and that is to never leave me alone or forsake me (Hebrews 13:5) for having that mindset  I am grateful.  The Lord has bought me from a MIGHTY long way and I  have the “I just can’t help but be grateful” attitude, and I make no excuse for it. 
I’ve been released recently from the therapy center to my home therapy on my own which is such a blessing.  I’ve tried out a couple of gym programs and will make a decision within a few days to continue strengthening, and building muscle that will help with balance.  I am grateful, that the therapist final words to me were “keep on trying difficult things because that is how you will be able to do the things you desire” to do.  I am grateful that some of the things I desire to do are also things that I enjoy doing.  I’m really looking forward to that.  I visited the local bike shop and test rode some bicycles, and will be back riding, as soon as the details are worked out for a new bike.
I’ve learned so much during this incredible experience.  My sister and I were reminiscing about how after the transplant we both just passed out Into a deep sleep, we had anticipated and had gone through so much to get to that point it exhausted us.  We were awaken by the night nurse who told us we both slept through the shift change which she said was unusual because most people are wake with numerous questions.  It was if we just fell in the arms of almighty God relying on Him to work through the transplant for complete restoration, no more concern.  We listened intently as the details were explained but I told Rida (my sister my) “that was way too much information given too quick to remember” she said, “you don’t have to remember that is why I’m here I’ll take care of everything” and that was music to my ears, that is exactly what I did.  The next 9 days were the worst of all but that is all behind us and I am grateful. It was during those critical days I learned the most about gratitude, and resonates loud and clear today.  So grateful that God gave us strength to pursue avenues to get to the transplant trial, there was no other options.  He gave us hope that forced us to keep on trying.  Just this week in Bible study I was reminded even though I don’t know what God is doing I am learning that “all things work for the good”…(Romans 8:28) including trials endured by this disease.  The Lord showed Himself strong through the transplant team, other doctors, nurses, support staff and even other patients. 

I learned that I was created to have His characteristics, so how I live, what I say, how I act are all ways to show gratitude when those things reflect Him.  Any opportunity I have to sing praises to God I will, (Psalm 147:7), with my whole self-every single part of me, because there were times I was unable to speak let alone sing but I tried.  I am going to express gratitude through my doing for others, serving whatever that looks like.  Psalm 150 mentions praising the Lord 13 times, overflowing from my heart is praise to my God, great things He has done.

I will be returning to Chicago for the one year follow up appointment required after transplant in a couple of weeks, and expect a good report.
My intentions continue to be to help raise awareness about Neuromylitis Optica (NMO), aka Devics Disease, help in the effort to find a cure, and to render aid to families directly affected by this disease, and for the many opportunities the Lord has afforded me in these endeavors I am grateful. 

Going forward I will finish old projects and begin working on the newer ones as the Lord directs. So thankful for the love and support each and every one of you have  shown me and my family. 
Monday, October 7, 2013

My faith, my help for the journey


But thanks be to God, who always leads us as captives in Christ's triumphal procession and uses us to spread the aroma of the knowledge of him everywhere (2 Cor. 2:14 NIV).
But thanks be to God! He gives us the victory through our Lord Jesus Christ (1 Cor. 15:57 NIV).
What a blessing it is to be assured that we prevail in victory according to the word of God.  We can hold our heads up high, shoulders squared, marching forward in the promise that we were created to WIN bringing Glory to God.
No doubt we will face obstacles as we go through this life on earth, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world (John 16:33)” that’s a good time to rely on His promises.  Overcomers!
I will admit during this journey, (especially when my hands were too weak to hold my bible, or unable to reach, or push the buttons on my pc to hear the word) my attitude wasn’t what it should have been. Yeah, most Christians would have been able to walk through what I've been through with flying colors, but it hasn't been that way for me.   However at some point I did convinced myself to do something different.  I recalled scripture I’d learn from my childhood days, to the ones I’d say with my girls for our scripture for each week, and all other means I’d hid the word of God in my heart.  In fact I remember the second time around at Baptist Rehab I would pray scripture out loud, one nurse walked in on me late one night, she said another nurse passed my room and heard me, she thought I might be losing my mind. It was my routine every night, after the room grew dark, and quiet I fell asleep most nights after singing, and praying to our God, it was my routine and realize now it was faith that the positive activated attitude was restored (mindset which is essential) and continues to be my motivating force to face every day.
God has purposed a journey for each of us, we march forward relying on His promises that He goes before us, and will never leave us. I am studying the Sovereign God, and the struggle I am having is the same issue I’ve had from the beginning of this season in my life.  I’d like to say that my faith is hands down what has bought us this far, since I am taking an honest approach let me also say  I really don’t get it all… and I am learning through this study I don’t have to get it all I must just trust HIM!  I read end of the story we are victorious.
I am excited about learning, and sharing new ways to defeat the enemy (not to give him credit) but he is on his job, he came at me with fear, and doubt.  That fear, and doubt is no match to what the word says, and the enemy will flee when he is being body slammed with the word.  I meant business, praying God’s word back to Him, I couldn’t go to sleep otherwise no wonder they thought I was losing my mind. Many nights I couldn't wait for them to make rounds so that I could start because I knew God would meet me there.
I deliberately use my energy and strength thinking on the things of God, infusing His word throughout my mind. Exercising my faith putting it another way. Do not conform to the pattern of this world but be transformed by the renewing of your mind that you may prove what is that good and acceptable and perfect will of God (Rom. 12:2).
I needed a change in my situation that came about when my attitude changed.  I am marching forward, in the midst of present circumstances. Every now and again I check my attitude, the thrust from His word is necessary to keep on this journey.