On May 3, I was admitted to the hospital to have a tracheostomy and to be started on invasive ventilation. Everyone hoped that using invasive ventilation, which would breathe for me and thus alleviate the energy demand on my respiratory muscles, would result in me having more energy. Although the ventilator keeps me breathing, my energy levels have never returned. It seems my Mitochondrial Disease has continued to progress.
I wish I could say once I received a tracheostomy and was started on invasive ventilation my life was free from any medical intervention. However, many complications have arisen--clogged trach tubes, allergies to trach tubes, trach tubes which were too long and dug into my trachea, respiratory tract infections, etc. In the last seven months, I have had countless doctor's appointments, six visits to the emergency department and have spent 46 days in the hospital (45 of those days have been in the intensive care unit).
(On a non-medical note, this year I have had many adventures. A swarm of hundreds, perhaps thousands of bees infested my home. I am very grateful to my friend Michelle for coming to the rescue by spraying the entire house and then allowing me to stay at her house for an impromptu slumber party as my house aired out from the toxic fumes. (For more details, read http://mitowarrior.blogspot.com/2017/07/the-honey-bees-come-for-honey-queen.html) Also, I had a rattlesnake fall on my head. Now that was a very painful experience but also a great story. I have yet to find another person who has had the excitement of having a rattlesnake wallop him/her over the head. And praise be to God, the snake did not bite me. I then had the "enjoyment" of using a shovel to kill the snake. (For more details, read http://mitowarrior.blogspot.com/2017/11/things-i-learned-today.html) Yes, that certainly was a memorable day!)
As I reflect back on everything which has happened this year, I can say this has been one of the most trying years of my life. And yet, God has richly bestowed upon me abundant blessings, mercies and miracles. There have been countless times when overwhelming situations have seemed absolutely hopeless. And in the depths of my despair, God has directed someone into my life or has revealed essential medical knowledge which brought hope and joy. I am very thankful that we can never go back in time and repeat our lives, and yet, I am forever grateful to God for this year. It seems through all these trials and challenges, God has allowed me to grow closer to Him. During the darkest and loneliest times of the night, God has allowed me to see His light and has allowed me grab hold of His light, storing this source of power deep within my soul.
As I look to the future, I have very few hopes and dreams about what I would like to accomplish. I know Mitochondrial Disease is a chronic progressive disease. Things I am able to do today I may no longer be able to do tomorrow. I try not to make goals, but instead, I try to rejoice in each moment and take great satisfaction in completing even the smallest task. I still hope that one day I will wake up and am miraculously healed from this disease. I dream about not having to be connected to a ventilation; I dream about not having a tracheostomy; I dream I am once again able to run down the street, ride a bike and splash about as I swim to my heart's contentment. Until that great day, I continue to pray. I pray for relief from my never-ending symptoms. I pray a bacterial respiratory tract infection which I acquired in July will finally be healed. I pray God will continue to richly bless my life. I pray God will allow me to be blessing in other people's lives. Whatever 2018 brings into my life, I am very grateful God is with me every moment, directing my path and loving me endlessly. It is with Him I can fearlessly face the future and eagerly embrace the great unknown. May 2018 bring much love, joy and happiness to your life. Shalom!
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