I have never done a blog before, but I want to share my experiences with this malignant form of MS I am fighting, raise awareness of the disease, and in particular an exciting treatment which holds incredible promise and has shown to “cure” MS in many, many cases.
This past Saturday I participated in the MS Walk for a Cure, my first time to attend this event. There were thousands of people there, a surprise to me. Even though I did not walk but was wheeled by many friends (thank you David, Bill and Pat), it was a joy to see so many out on a cold May morning willing to get up early and support those who fight, curse, and struggle with this disease.
Our struggles are physical, but emotionally we struggle even more. It truly is a grieving process, much like a loss, a death. A loss of our body’s ability to do so many things that in the past were unconscious movements. A loss of daily function…at times…the ability to drive, brush our teeth, eat neatly with a fork. The loss of our senses, the loss of cognitive abilities. Have you ever been driving and know where you want to go, but not know how to get there…in your hometown where you grew up? Have you ever picked up a puppy and not known if it was male or female? I have lost the ability to speak when trying to carry on a specific conversation, I stutter and cannot speak words. We wonder where life will take us in one year…five years. Those with my type of MS do not go beyond five years, for us, it most likely will not exist. And if it does, it will not be pretty.
We with PPMS try to cram in 20 years of living into 2-3 years, but our body will not let us, MS will not let us. MS is a thief that sneaks in every night while we sleep, and steals away with our body, our abilities. Each morning we awake wondering… “What will work today, what have I lost today.”
SO…Enough of that! I won’t stop, I have a plan, a great plan to erase this MS for good, strengthen myself, and start all over again. A new inner body, a new inner self determined and stubborn. I am planning on going to Russia for HSCT – Hematopoietic stem cell transplantation. Read more in the link at the top of the page.
I promise – the rest of my blogs will not be downers. I just needed to express how I, we, struggle on the inside when on the outside we are often told we “look so good”.