From California to NC- Ocrevus, Elezanumab, Clinical Trials, Homeschooling, and a freaking long distance relationship with my Husband?!?

My four year old crawled in bed with me this morning. I’ve been keeping a late schedule since we traveled across the country and relocated in North Carolina. However, it’s hard to fall back asleep without my husband in my … Continue reading From California to NC- Ocrevus, Elezanumab, Clinical Trials, Homeschooling, and a freaking long distance relationship with my Husband?!?

The Coronavirus (COVID-19) and the Immunocompromised/ Chronic disease community

Disclaimer- I am not a health professional. The opinions shared in this article are just my opinions. I am also sharing informational resources. Always discuss your healthcare concerns with a medical professional. I have to admit that the coronavirus has … Continue reading The Coronavirus (COVID-19) and the Immunocompromised/ Chronic disease community

The New Normal (Old draft I didn’t post from last summer)

Had a wonderful evening, spending time with family. Tuning into life instead of my MS and symptoms helps them feel less present and less pervasive. The problem with MS is symptoms are new or in flux. They don’t always feel the same. For me I have a baseline numbness that blends into the background. If something feels the same your attention isn’t always brought to it. It’s not normal, but it becomes the new normal. You can forget about it and go about your day. However this same baseline numbness isn’t a steady sensation. It is constantly in flux. Picture … Continue reading The New Normal (Old draft I didn’t post from last summer)

What it feels like to have MS

What follows is my answer to the question above that I found on Quora The feelings of multiple sclerosis are described by the name of the disease. Just as there are multiple scars there are numerous feelings those create. This moment as I’m sitting here typing this, if I tune into my body I start to feel the numb sensations around the back of my neck, the numbness reaches around. I’m reminded of the imagery of a hand because I can feel it’s fingers and the tingles lightly brush my lips and the skin around my mouth, my cheek. Going … Continue reading What it feels like to have MS

Tomorrow’s Remyelination Infusion of Elezanumab

Tomorrow I am going in for my seventh infusion in the clinical trial of the remyelination drug elezanumab. For the first three infusions after I came home I was really wiped out. I rested in bed for two days as much as possible despite having two very active small children. I was exhausted. Infusion number four presented a different feeling. I was no longer wiped out; I felt semi normal, for me. I started noticing some small changes. I feel like my cog fog is much less than it was. My thinking seems a bit clearer, less foggy. It’s not … Continue reading Tomorrow’s Remyelination Infusion of Elezanumab