My dad and I were talking about me having multiple sclerosis. He was saying it wasn’t fair, I have a good heart. My first words were I still have a good heart, that hasn’t changed but I knew what he meant. I heard this before from him, from my mom, my stepdad, from most of my family. They look at multiple sclerosis “stealing” away part of my life. I’ve discussed this topic a few times in my blogs. …
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…
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…
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. …
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…
