For example, I had Lhermitte’s sign a few years after I was diagnosed, which is a shock, or a feeling of tingling, that goes down your neck and back. It wasn’t really painful, just annoying. This past year I had a relapse and had trouble walking — it felt like I was walking through mud. Luckily, steroid treatment helped me again.
Now my mantra is, I only have one body and I have to take care of myself, because if I don’t have this body, I can’t do anything. It’s really important to get enough sleep each night and manage stress. I often pause and think, Do I really need to be doing this, or am I better off resting and doing what I need to do at home?
Exercise has also been a lifesaver. It’s important to strengthen your body and muscles if you have MS, and it’s also good for your mind. And in the summer, I know I can’t stay outside for a long period of time. I really struggle in the heat. I have to find a place I can go to cool off and be in the air conditioning. If I don’t, I get tired and my vision will be blurry.
This disease is really invisible. You may be on the subway, and look perfectly young and healthy, but have horrible fatigue and really need to sit down. People can’t see that, so you have to share your voice and explain what’s happening, and that can be really hard for people to do.
I feel like I am lucky to have doctors I can rely on and a support system, friends and family, who are there for me. My husband has been really incredible, and so has my business partner at Socialfly, Courtney Spritzer.
It’s been a bumpy road. I’ve had my ups and downs. But a lot of good things have come from this too. Getting a diagnosis like MS is not a death sentence — your life is not over. After a serious medical diagnosis, it’s more about problem-solving and figuring out what your new life and your new normal is. I want people to know that life does go on after a diagnosis — you can figure out a path forward.
This post has been edited for length and clarity..