It’s been twelve years since I received my diagnosis of multiple sclerosis. I try to be positive, I really do; I try to view MS as just a part of my life. A part of my life that makes things more difficult, a part of my life that adds uncertainty and fear, but still as only a part of what my life is. I try to not let it define me. Because at the end of the day, I get to choose how to define myself. But this is where things have gotten more difficult. I have started HSCT treatment, a treatment so invasive that it no longer allows MS to be just a part of my life. It has taken over. At least for now.
I have undergone four different treatments for MS, none of them have worked. It’s one of the things that has made MS so difficult, complete uncertainty. My last treatment of Lemtrada was supposed to be it. It was supposed to work. But it didn’t. I received the news of it’s failure over a three minute phone call from my neurologist. That moment hurt.
So now it’s HSCT. What is HSCT? It stands for Hematopoietic Stem Cell Transplant and basically means that we are getting rid of the army that is my immune system and replacing it with a new and improved army (immune system). Out with the old, in with the new.
Right now I’m in the out with the old phase. So far I’ve felt a little nauseous, a lot of hiccups, very tired and itchy. But I think that it’s the insomnia that’s the worst. I have had to put life on hold, give up boxing, minimize my running and say good bye to many of the things that make me who I am. I try to remind myself that this is temporary.
The countdown is on, 34 days until I complete treatment and I get to day 0. Day 0 is Stem Cell day, also known as my new birthday. In with the new.
HSCT is my only remaining option. A fact that makes this whole process scary but also gives me the silver lining of knowing that after this it is out of my control and MS will become a part of my life but not my whole life.
The journey has begun, and I’ll keep you posted.