I feel like I’ve been waiting for a long time.
In reality, it hasn’t been that long, not really. Time is no longer relative and it either speed up or slows down depending on the news you are waiting for. Well, tonight I got mine.
I finished the elimination medication that flushed the Aubagio from my bloodstream. It was three doses a day for eleven days and while it wasn’t enjoyable (not in the slightest), it meant that I could start the new journey that I am on.
I waited to hear something from anyone, but I finally had to reach out to my nurse at the MS clinic. I had to email her twice before I got a response. She had gotten in touch with the people from Mavenclad who got in touch with me. I find it odd but somehow reaffirming that I have to be my own advocate for my health. It makes me feel as if I’m partially in control, something I haven’t felt for a while now.
I was told by three different medical professionals that I would have to isolate myself. According to the people from Mavenclad, I don’t have to isolate, but I have to be wary of people and practice covid protocol’s while I am taking the Mavenclad medication which is okay. I’m used to that by now.
From the moment I start taking Mavenclad, it will deplete my immune system. After the three month treatment, it will be almost completely gone. I will have my front guard, not my rear one. I like to think of that front guard looking like solders at outside the doors of the palace that is my body, asking for identification and proof of vaccination.
It will take six to nine months for my immune system to rebuild itself completely and hopefully without the lesions. I’ll only have to do this once a year if it all works. The nurse said that at the very least, I will experience headaches, fatigue, abdominal pain and ten percent of people taking it experience hair loss. Good thing I can rock a bald head.
Strangely, I’m not afraid as I write this. It’s not because I feel brave or particularly strong. More because I have done everything I could think of doing. When I first got the news that I had new lesions after my last MRI, I had thoughts running through my head for a while. I wondered if I had been better, if I had been a kinder person, if I had exercised more, eaten even better, whether or not this would have happened. Late at night, I would look up at the ceiling and wonder why, why me, why now, what did I do? I pleaded with the Gods, begged them to change my path but ultimately it had already been changed for me.
I was so afraid. I was afraid of what the MS was doing to me, what it would continue to do to me. I was afraid of the new medication and what it could potentially do to me. I looked at the list of possible side effects: nausea, abdominal pain, headaches, flu and cold like symptoms, hepatitis A and hepatitis B, Shingles. Cancer.
I lived with that fear for what felt like eons, letting the words run around in my head and grow larger and bigger each day. When I read, all I could see were the list of symptoms and side effects, when I wrote, all I could hear in my head was the word cancer repeated over and over like a mantra.
I’m thankful that I have a therapist. I talk to her about a lot of this and over a few appointments, she helped me work through the five stages of grief. By the end of last week, I had arrived at acceptance. It felt odd standing on that shore, knowing that there was nothing I could do, that there was nothing that I could do except what I was already doing.
In all of this, I just have to keep living every day. Sure, there will be days where I am in pain. There will be days where I will be afraid or unsure of how I will make it to the next day. However if there’s anything that I’ve learned, it’s that while the sun goes down, it always comes up again, ready to start a new day. Every day will be a new blank page and I get to decide what I write upon it, literally and figuratively. In all of this, I need to remember that my health is paramount and that self-care is so important,
I’m trying to look at the positives: I am surrounded by love; I am not alone, and I sparkle. I have my beautiful husband, my family and friends and our cat always makes sure that I’m okay. I think of that time eight years ago when the MS first hit and I was alone and afraid. Now, standing on the shores of acceptance and looking at everything I’ve done, and everything I have yet to do, I’m ready.
I feel like someone is turning the page in my life and I’m about to start a new chapter.