I just heard today that a friend from High School passed away. I hadn't spoken to him in over 20 years and I don't know what happened or how he died, but it made me sad none the less. I'm only sharing that because I had been debating on if I was going to write a post about the treatment that I am undergoing at the moment. This person's death just motivated me, and I don't know why, but I'm going with it.
One of the biggest struggles I have in my life is just accepting the fact that I have a disease that is incurable. This disease is going to destroy my life eventually, but I might not die from it. I may just live a life of pain and disability. I just can't accept that. I don't feel that on a daily basis. Most of the time I forget that there is anything wrong with me. Except for the days that I can't. Like when I see my neurologist, who, for many years has been telling me that I'm doing well. I'm doing everything right. And then he tells me that my treatment is no longer working and I have now have what they call 'black holes" in my brain. I'll be honest, that scared the shit out of me. I also found out that one of those black holes is in the area that controls my bladder. Pun intended, that pisses me off.
MS is a disease that affects each patient just a little bit differently. A lot of us do have similar symptoms, but they are different. The areas of the brain and spine that are attacked are what makes us different. Lesions can form on different areas and create different symptoms. I'm not here to tell you all about MS. I just wanted to share a bit about my current journey.
When you have MS, you pick your own treatments. I think this might be the same with other diseases but I'm not sure. I find it frustrating, but I do understand some of the reasoning behind it. When I went in to see my Nurse practitioner I had already chosen which treatment I was going with. I did research online and read anything I could on each option available to me. She totally changed my mind. While I think it's nice to have options, I do value the opinions of those in the field.
So the treatment that I have chosen is an infusion. It is essentially going to wipe out areas of my immune system that are attacking me. This treatment is akin to chemotherapy. It's a harsh medication with some possible nasty side effects but I get to keep my hair. All medicines have side effects. I'm not even that fearful of the side effects. What I am worried about. is that I have heard such wonderful results from this drug. It's giving me hope. I've been told by more than one person in the medical field that it's the closest thing they have to a cure.
So I will be sitting in this chair for a total of five days this week. For 8 hours at a time while a drug that makes me feel absolutely awful is pumped though my body.
All I can think about is, what if it doesn't work for me. What if I'm part of the percentage that doesn't benefit from it? I know that is hardly the right attitude. I think that maybe a positive attitude will help. I'm sure trying. If I try hard enough I will believe it right? I think that maybe I do believe it, but there still is that doubt in the back of my brain that won't go away. I don't know how to make it stop.
Today was my first day of this treatment and it's already kicked my ass a bit. I've realized while writing this that I have more fears than I thought I did. I did just want to update you all on why we've been prerecording some episodes, but I guess I needed to get that fear out. I know that the next few weeks are going to be tough for me. I guess that if I am well enough to be sitting here typing this. I really am doing okay. Even better than that, I'm going to be okay. I don't know how long my recovery will take, or even what my recovery is going to be like. But I will recover. If I say it enough, I will believe it.
Wish me luck
Kate
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