(Text linked to websites, videos, and articles I used as sources for this blog post. Feel free to click, as the link will bring up a new tab and you won’t use your place in the blog.) Elezanumab is another … Continue reading Tight Rope, Frayed Wire & Sandy Feet
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?!?
You know when you were a child and your tooth got loose. It hurt. It was painful. The pain drew you in. You wanted to touch it. You wanted to experiment with that pain. There was an exquisite edge . … Continue reading Pain and Hurt from a Narcissistic Disease- the Draw and Repulsion Of MS Pain- My story
I was nervous on the drive to my clinical trial appointment this morning. I had that nagging feeling I had forgotten something. I had my purse, my phone, some snacks… but not my cane! 😱 Continue reading Clinical Trial Appointment Week 52 of the Remyelination Drug Elezanumab for Multiple Sclerosis
Savvy Cooperative is sharing opportunities to parents of adolescents with multiple sclerosis to improve the way clinical trials are conducted. There is an opportunity also available for teens with MS. Continue reading Savvy Cooperative Paid Opportunities for Adolescents with MS and their Parents
Kids are still asleep so I’m taking a minute to type up a blog. Damian Washington’s Interview with Brittney Quiroz of A Hot MS popped up on my feed this morning and started the day out right, getting inspired. Damian … Continue reading A Hot MS, Damian Washington, and a little about my adventures with mobility aids
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
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 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
This morning I found Dr. Brandon Beaber, a neurologist and MS Specialist in Downey, California for Kaiser Permeante. The video is entertaining and it makes me feel good inside to know that he cares enough about the MS experience to … Continue reading MS specialist tries four MS drugs just to experience the side effects first hand.
