My Platform NMO Rare Disease

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.