A Collection of Thoughts on MS: Celebrating my 3rd Year
I'm 30 years old, and I was diagnosed when I was 27. It's been a wild, crazy trip, and I thought I'd share some things that have been on my mind for a while since being diagnosed.
- I'm never quite sure if the pain is the MS, or just some other pain caused by an unknown source. It's always a guessing game; am I having an exacerbation, or is it just me?
- One of my symptoms that lead me to diagnosis were my hands and feet being constantly numb. Three years later, my fingers are still numb and the feelings in my hands can vary on the day. The ironic part is that I'm a painter, and sometimes it's hard to grasp a brush. I find a little humor in that, and it lets me not take myself so seriously.
- I've been on four different medications since first being diagnosed. I wonder if switching from one medication to another is going to be affect me in the long term. I'm on tysabri now, and I wonder if I'll be able to stay on this drug. Sometimes, the drugs scare me more than the disease.
- A part of me likes seeing the reaction on people's faces when they find out I have MS. You wouldn't know by looking at me that I have MS. There's still this stigma out there that its a death sentence, that I'll be in a wheelchair in five years. But, a part of me wishes I never had to tell anyone, that I had nothing to share.
- I hate MRI's. I dread getting them. You would think that if it's so important to get MRI's, and if they are so incredibly helpful to science and medicine, then why aren't they less scary? Who wants to be stuck in a tube for two hours where all you hear is banging and you cant move?
- I've learned to be my own advocate. Know whats best for you. Speak up. If you don't like something, say something. My work schedule was making me exhausted, so I spoke up. I didn't like my first neurologist, so I found one I liked. The first four medications would make me ill, so I changed. No one knows what you are going through, only you know whats best.
- I decided to go into therapy a year after my diagnosis in order to help me figure out what just happened to me. I felt like I had just gotten thrown into an unknown world and I had no idea how to navigate. I am so grateful that I found someone that was able to guide me forward and coach me how to live with MS.
These are just some thoughts I have; I'm still under the five year mark so this is still a very new experience for me. But that's the angle I'm taking this diagnosis, that it is an experience. It's not one that I chose, but it's here to stay. I think posting my thoughts on it will help me embrace and accept it.
How many specialists did you see before finding "The One"?