You can’t make this sh@t up. I get a call from the girl working on my infusion authorization, my insurance company wants to know the name, address and telephone number of my pharmacy where I am currently getting my prescriptions. The girl who called me really tried to be professional as possible but had the same reaction I had which was… WTF???? Will you be sending Ocrevus to my local CVS for me to pick up and take to NYC…
Yesterday I drove to physical therapy as normal and when I was getting out of my car, I realized how hot and humid it really was out. Normally I wouldn’t go on days like that, but I was there already, I wasn’t going to turn around and go home. So I hobbled my way in and the normal secretary, Millie, was there. Not thinking anything new, I did my typical good morning smile with a “happy Friday Millie, how you…
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…
Except my morning coffee, I’ve had no issues becoming vegan. I actually like it. It definitely has its challenges though. I was at a graduation party yesterday, of course, I couldn’t eat a thing. I always prepare beforehand when going on these ventures though, so for me it doesn’t become an issue. Yesterday, I ate before I went so I wouldn’t be hungry. At other events, I’ve brought my own food to heat up or brought a vegan veggie burger…
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. …
I’m attending a discussion group today for people with multiple sclerosis or care givers of people with multiple sclerosis. It’s a round table discussion group that is lead by two different MS doctors. Many years ago, I was a patient representative for the drug Gilenya. I use to tell my MS story to a group of people either before or after the guest doctor would discuss MS and how the drug worked. I must admit it was a lucrative deal for…
I finally picked up a book to read. Actually I picked up my kindle but the act is the same. I use to fly through books. I read all the time. Not as a child., more as an adult. It started when my daughter was small watching the same dumb shows or movies on TV, over and over and over and over again. I’d sit with her and read. When I took over my last position at my job, I…
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…
Years ago I participated in a multiple sclerosis activity sponsored at the same physical therapy office I go to now. My main physical therapist started the program 17 years back and became the multiple sclerosis therapist of the office. I attended this program he started once and only once. Why? Every person in attendance was in a wheelchair. I was only 2-3 years into my disease and couldn’t face that, wouldn’t face that, so I never went back. Instead I…
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…
