"David and Goliath"
I have never been the "fighting type," but multiple sclerosis is a bully I will continue to fight and get back up after each blow is thrown. While my diagnosis is still fairly recent, what I have already gone through is enough to last some people a lifetime... and truly, my battle has just begun.
Let me give you a quick overview of my life since diagnosis in February 2019.
Life since my MS diagnosis
Diagnosis: Multiple sclerosis and optic neuritis of both eyes.
This led to multiple specialists, several doctor appointments, and a lot of time figuring out my "new normal."
Treatment: Self-injections of Rebif, painful, emotionally straining, and unsuccessful.
This led to a very quick relapse which caused more damage to my brain and led to the decision to begin the "Cadillac of all MS drugs" - Ocrevus - an immunosuppressant IV infusion to help slow down disease progression.
Result: Unsuccessful, and increase in symptoms and disability.
Self-advocacy and aHSCT
What this led to: Loss of job, loss of home. What I let those lead me to do: Self-advocacy! Which successfully turned into an acceptance to receive an intense treatment known as aHSCT which to sum it all up is basically high doses of an intense chemotherapy drug (2 rounds), bone cell mobilization injections (about 40 total), stem cell harvest of my own healthy stem cells, more chemotherapy to completely wipe out my immune system of ALL cells (2 more rounds) Stem Cell transplant (rebirth!) a regimen of drugs to take throughout the day, Neutropenia (talk about a nightmare) finally, a success in getting my WBC count to above 4,000 and a finishing infusion of a drug called Rituximab to destroy any possible B cells left.
Completed aHSCT in the middle of a global pandemic
I bravely completed aHSCT in August 2020, in a foreign country, in the middle of a global pandemic. You might think I am crazy for even considering this at such a time in this life, and you might just be right.... The next step is recovery (12-24 months long), back home in Ohio, in the middle of a global pandemic, while being a single mother to four children, having two of them enrolled in a full time digital academy and the other two in the school building... which unfortunately was ended when COVID cases started spiking and schools were once again closed, forcing my youngest two children to begin remote learning.
Isolation, depression, and stress
Some friends and family and major parts of my recovery and support system began to feel too nervous to be around me for fear of getting me sick, which then led to a downward spiral of Isolation, Depression, and Major Stress. However, I did not allow myself to stay there, after working so hard to pull myself out of a pit of despair just a few years ago, so I prayed and devoted my time to reading scripture, devotionals, involving myself as much as I safely could in my church, journaling and reading positive and inspirational books, all which lead me to a place of Overcoming, Self Realization, and Increased Faith.
My faith has equipped me in this battle
As I sit here, jotting down my thoughts, I feel emotions that are strong, and also so contradictory to each other. I feel incredibly proud and grateful for how I have handled the curveballs that I have been thrown; I also feel grief and disappointment over the fact that I have had to go through this, and that my children have also had to be passengers in this crazy ride, experiencing every bump along the way. I will say this though, I have found over and over again that we can take what we are given in life and let it be a challenge to overcome or a curse that makes us fold. For me personally, my success in getting through the storm and overcoming each obstacle, with a sense of peace for my future lies solely in my faith. I had to look no further than in scripture to find the tools needed for my battle.
Joshua 1:9 "Be strong and courageous, do not be frightened. Do not be dismayed, for the Lord, your God will be with you wherever you go."
1 Peter 5:7 "Cast all your anxiety on him because he cares for you."
Corinthians 5:7 "For we walk by faith, not by sight."
May we all be like David
I am a person, living with Multiple Sclerosis. My battle will be lifelong, and I am sure there will be times where the fight will seem to be "too much of a Goliath," and I will have to remember that it was not David's physical strength and size that won his battle against him; but his incredible and unrelenting faith. My hope, for all those who read this, is that we may all be like David, No matter what our Goliath is.
The holiday season is among us and can be so stressful! Do you experience more flares during this season?