What I Fear

Because MS is progressive, you worry about what will happen in the future. These fears vary from person to person. A musician or a surgeon may be most concerned about not being able to use their hands, while an athlete may worry about not being able to use their legs. I play this pointless game in my head: if I could chose which MS dishabilles I will have, what would I choose? You know, like that "would you rather" game kids play: would you rather have a third nipple or an extra toe? Go ahead, Google "would you rather." Have fun! I ask myself, would you rather be in a wheel chair or not be able to see? And, on and on. I know it sounds a little dark, but for me, it helps put things in perspective. Like, would you rather not be able to ever open a jar again or need a catheter? See, not being able to open a jar is not that big of a deal. Well, for me. Someone might disagree. There are things I fear. Some big, some small. Some have come and gone. Others, I have yet to imagine. What are you afraid of?

This Is an MS Hug?

I woke up one morning to a steady pounding on the right side of my rib cage, just under my armpit . Thump, thump, thump. Every few seconds. Like a heart beat. It didn't hurt, but it was noticeable. A spasm. Constant. Every few seconds. I tried to feel it with my hand, to tell if my body was actually moving. I had my son put his hand on my side. He felt it.

Cold and Heat Intolerance

I'm a Pacific Northwest (PNW) girl, born and raised in the suburbs of Seattle. It does not get particularly cold or hot here. Snow is rare and short-lived. We have limited snow plows and deicers, and when it does snow, everything pretty much shuts down. Extreme heat is also rare. In my forty-one years, I've never lived in a house with central air (except when I lived in DC). Lately, our winters have been getting snowier and our summers hotter. I am not a fan.

Symptoms: Real or Imagined

When I first learned I might have MS, I read about every symptom. I became hyper-aware of every sensation in my body. Yes, I had a neurologist and an MS specialist, who ordered MRIs, blood work, and a lumbar puncture, but I couldn't sit idly by. While waiting for tests and follow-up appointments, I was on a mission to collect as much evidence as possible to determine whether or not I had MS. But, when you are fixated on something, it can be hard to determine if you're noticing real symptoms, or if you're imagining them.


When I left the eye doctor, I was in tears. I couldn't see out of my right eye. I knew it was neurological, but I didn't know what was wrong with me. The eye doctor told me to go to urgent care for a neurological exam, steroids, and an MRI. I was panicking, imagining the… Continue reading Steroids

Day One: I Can’t See

On Thursday I worked from home while my son had virtual school. We went to a protest for police accountability and racial justice; we held signs, we chanted, and we listened to powerful speakers. On the way home, we sang along with the radio and danced in the car, not caring how silly we looked.… Continue reading Day One: I Can’t See