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
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
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)
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.
http://www.youtube.com/watch I will try to get a post up soon, but in the meantime watch this interview that I did with Damian Washington on my progress in the clinical trial. 🙏🏼🧡 Continue reading Update on my participation in the clinical trial for the remyelination drug elezanumab .
I was diagnosed at 20 years old with RRMS. At first I just had fatigue, some tingling, and numbness that came with a relapse and went away. On a hot day when I was walking I would feel some tingling, sometimes I would get a little fatigued, but everything still felt mostly normal. Then at 22 I had a major relapse that made me walk like a drunk at a university where drinking was against the rules. A week later I had horrible back spasms that were very violent and almost seizure like- though I was conscious and very aware … Continue reading The Ups and Downs of Day to Day MS Symptoms