I have been having occasional bouts of insomnia in recent weeks. While I have been able to keep active with all my activities, including volunteer patient sessions and workout classes, I was concerned that it might affect my health.

I went to see my neurologist for my annual meeting on April 14. He was encouraged as the lesion at C1 had disappeared. He said it was good news as it indicates that I am able to heal. We will schedule another MRI for next year. I told him I had stopped the drug Tecfidera because of increased risks of PML.

I also had several really good volunteer patient sessions and even had the chance to catch up with the Dr. who was my first ray of hope throughout my ordeal, Dr. Silke Cresswell. She was pleased to see me looking so well. She remembered my case very clearly and told me she felt so bad for me as my suffering was acute.

About a week ago I started to notice that the roof of my mouth on my left side was feeling a bit numb. this has progressed to include my lips. And on Thursday evening, I had a small shock under my left eye. This is the potential nightmare with MS — having TN on both sides of the face. I know the routine. The first time I got shocks on the right side of my face, I had a full year before I had excruciating pain. But at least now I know where to turn for help, I know which drugs work and don’t work for me.

I sent a message to my neuro and we’ll be having another visit in October to discuss options. That will give me time to think a bit more about it.

Over time, my life gets smaller and less engaged. And I’m still ambulatory and nobody can even tell I have MS. Each year it gets harder and harder to ask for donations for the MS Walk . You don’t want people to donate out of pity but it is so easy to be forgotten. That’s another post for another day.

The best donations are the regular ones who give every year right away. And some of them send the most beautiful notes, like this one:

“You have our support my dear friend. You are a hero and inspiration to all.

And yesterday I received an unsolicited contribution from a staff member at my old high school. That was extra special. I’m not sure how she found me but it was a pleasant surprise.