It's better now or I wouldn't be able to write this blog post. I'm a happy passenger in the car, going to visit my sister for the weekend. My day started at around 6 when I woke up but laid in my bed meditating. I like doing that on my coach better but why waste the time laying there in my bed. I purposely showered and did my hair yesterday so I wasn't rushed this morning. It never fails a…
My Ocrevus infusion is going to be on Monday August 14 now. Not the worst thing. My infusion for Rituxan was scheduled originally for July 17th so the change to the new drug set us back roughly a month. My neurologist told me that even though Rituxan is given on a six month schedule, the drug could last up to 9 months effectively. I feel fine and now I only have 5 days to receive an infusion so I am…
After 8+ years, I have to give up my normal everyday workout routines. I need to find something else that works that doesn’t aggravate my shoulder tendonitis. My wonderful therapists over at physical therapy have started adding in arm exercises to help build up my arm muscles again. The plan is that instead of going 2 days a week to go to therapy 3 days a week. The focus is going to change to building up arm strength to better…
It is just one of those days when things are more difficult. It could be chalked up to sleep, I definitely didn’t sleep well last night. Most people would probably blame the weather. I don’t get this one honestly. I find my doctors and therapists blame the weather an awful lot when I have a “bad day”. I get the heat sensitivity one because I live that one but today it is 78 and cloudy. So today it’s blamed on…
Id love to tell you I came out of yesterday’s round table discussion group enlightened with tons of new information, but I can’t. I unfortunately didn’t learn all that much. This is what I took away that I feel was note worthy. Dr. Krieger’s Leaky Pool analysis of MS. He created an app for an iPad and it’s only for an iPad. If you search for MS topography, you can download the app for free. …
Well found another thing that can no longer be on my list of things I can do, get drunk. Since the last time I actually consumed a lot of alcohol, other than wine, was over 2 years ago, I had no idea. I went out for dinner with my friend last night and had a very, very dirty martini, my new drink choice. No big deal if I had one, might not have been an issue if I stopped at…
I’m hibernating for the summer. For most people with MS heat is very difficult. It causes fatigue and muscle weakness, spasms and it basically exacerbates all your current symptoms. They make a cooling vest but let me explain what this thing is. First it’s a vest that comes up to your waist so if closed will nicely accentuate your hips not very flattering. Second it’s this light brown/tan color that is just plain ugly. Third the vest has something like…
On December 13, 2016, I wrote a blog about Alpha Lipoic Acid and multiple sclerosis. On July 3, 2017 this article was published in medical news today. http://www.medicalnewstoday.com/articles/318225.php Ive been talking alpha lipoic acid now for 7 months. I still take 2 600mg pills a day. One in the morning and one at night. Alpha lipoic acid started about 3 months after starting high dose biotin. Another Vitamin shown that in high doses has stopped disease progression. Since both biotin…
Last year at this time, my first blog post said under construction. I hope you enjoyed my weeks worth of revelations of the past year of blog posts. This week, I thought it was gonna be more of a downtime week, didn’t turn out that way. My aide started on Wednesday. Originally I asked for three days three hours a day. The recommendation of the nurse evaluator was for seven days. My case manager and I decided on three days…
I’ve been so involved with the transition to Ocrevus, that I haven’t talked about that I was approved for the nursing aide by my insurance.The evaluator put the request in for 7 days but I really didn’t want an aide 7 days a week. I wouldn’t even know what to do with someone here that many days. My caseworker told me, with the multiple sclerosis diagnosis, it is easy to get the increases if needed. I decided on 3 days a week…
