I got back from my sisters at close to 8pm last night. Whenever I go away and the trip ends, the highlight to coming home is seeing my dogs. No big shocking news there,especially if you follow my blog. I stepped out of my car and looked up at my window to wave hello to my marshmallow howling in the window. I do this every time I come home since his face started looking out for me. Well, unfortunately, last…
What do you say? Is it easy to imagine a different life? A life where you weren't sick. A life where walking wasn't difficult. A life where you can feel if your hair was dry or damp or your clothes are cotton or silk. Each year that goes by the image fades a little more. I've had MS for so long I can't imagine my life without it anymore. The girl who didn't need a walker passed away over 3…
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…
Finally, after countless phone calls and so much unnecessary stress, my insurance approved Ocrevus. However in their approval, they didn’t approve me getting the infusion at Mt Sinai hospital where I was scheduled. I’m approved to go to a place on Long Island about 20 minutes from my house. Since I just got the approval at 5:30 on Friday evening, there was no way to get me scheduled at the new infusion site for Monday so it will be done…
Can you sue an insurance company for stress? I know you can sue debt collectors if their actions cause undue stress. I was wondering about insurance. The stress that I’ve been under for this last week dealing with my insurance is ridiculous. Everyday I speak to them I get a different answer. Yesterday I was told they were waiting for clinical notes and a copy of my last MRI showings I have relapse remitting MS. I can understand if this…
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…
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…
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 pretty sure I had a MS long before I was diagnosed . I had many strange things happen even as a child. When I was in the fifth grade, I got it rash. The rash was only on my hands and my feet, like gloves and socks. The day my mom took me to the dermatologist, I threw up in the bathroom. The dermatologist said I was having an allergic reaction to the virus. My body was literally allergic…
