So far I feel fine since my Rituxan infusion, although I am all too aware it won’t stay this way. After being on Rituxan or Ocrevus for the last 4 years you kind of get a feel for these things. I do have to say I don’t feel bloated from the infusion. I think it is because I drank so much water. For some reason my mouth became Sahara desert dry during and the night after I received the medicine….
My infusion scheduled for March 17. I’ve been on many of the disease modifying MS drugs over my 23 year span with the disease. Betaseron still holds the record of 12 years but that also has to do with the drugs that were available when I first got diagnosed. I have been on either Rituxan or Ocrevus since 2016. I group these two drugs together for very specific reasons, they are fundamentally the same. The biggest difference is Rituxan is…
At the age of 49 I’ve lived almost half my life with the disease. It was the weekend of Valentine’s Day when I was moving into my new home that my left foot started to go numb. Within 4 days it was all the way up the entire side of my body. Within 6 days I was at a neurologist who was asking my mom and I if anyone in my family had MS. Having actually had optic neuritis about…
I wrote a blog giving you information that my specialist in NYC has given to all their patients. Covid vaccination information for MS patients. The National MS Society has also released information https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance. There is a great article on vaccines in general with various MS drugs that I definitely encourage everyone to look at https://www.mslivingwell.org/2020/11/28/vaccines/. Basically you can find anything out in the vaccine and MS by doing a Google search. For all of the Ocrevus people out there, I…
It’s funny because all my complaining last week about NOT getting my infusion leads to this: I feel awful. Please, please give me my medicine. Pump me up with all this shit so I can feel lousy.  kind of makes you wonder what the hell I was I fighting for. All anxiety for four days straight. All so I could feel horrible. Rituxan Infusion Finally Done but still wasn’t smooth. It never fails someone always asks me, does it…
It was truly an unbelievable day yesterday. A day that did not end with her infusion. Not only did it not end with an infusion, it didn’t end with an answer as to when the infusion is going to be. I don’t even know how or where to begin. It turns out that CVS pharmacy is broken into two segments. One segment is the one that called on Monday rescheduling my delivery to Wednesday and the other segment is the…
I never watch TV through my TV carrier. I always watch through my Firecube. No matter what it is, unless it’s something that I record, I’m never on my TV. That being said, it’s also very rare I see commercials. However I was catching up on old Bravo shows that I neither recorded or watched while they aired. On the Bravo app, there’s commercials. When you’re watching an entire season of some thing you end up watching a lot of…
I can’t believe it’s been six months already. Well I guess it has because all my reminders went off. Actually about a week after my last infusion I started receiving phone calls to set up my appointment. It was crazy. Actually I thought CVS specialty pharmacy was crazy. I never used them for my Rituxan or my Ocrevus so I was so confused why they kept calling me. Sure enough another change with my insurance. Great, because those have always…
I’m doing a lot better with my new wheelchair now. I don’t love everything about the chair but I am consistently using it now. It turns horribly, I hate that. It is also difficult if you maneuver wrong and hit a wall. You can’t just do a simple correction. You have to move forward or back still hitting the wall to maneuver yourself off the wall, if that makes sense. The wheels that move this chair are in the middle…
Is summer over yet? I’m ready to put on my oversized sweatshirt. It doesn’t matter that I stay indoors with AC the humidity penetrates to my bones. I know this question was asked by Steve over at MSich Chronicles http://msichchronicles.blog/2020/07/29/evansville-heat/, but how do people with MS live in hot, humid places? I’m in countdown mode until I can officially say its Fall. Right around the time of my next Rituxan infusion. For any new readers, I switched back to Rituxan…
