Tag Archives: Tysabri

Day +79 Update! One year DMD-free today!

I cannot believe that one year ago on May 13, 2016, I took my last Tysabri infusion, and have been off all DMDs!

I’ve been hiding a bit because I’ve been a bit unwell, but I’m fighting hard!!

Time to start blogging again…

Many times, I go on these lovely breaks. Usually because life is either busy, or I’m too tired to do more than my day-to-day stuff. I’m awake late tonight because I am on my third day of prednisone taper following my 3 day steroid IV Tues-Thurs.

Steroids have always been good to me and have managed my MS relapses well. I was quite busy today (and somewhat productive) and am still not sleepy, thanks to the lovely steroids.

I need to blog to keep track of this next journey in my life – The one where I figure out what I will be doing next to manage my disease. It’s not an easy decision, but it is one that needs to be faced soon. I was on a very heavy MS drug for 3.5 years, and I still ended up with active lesions on my brain. Booooo.

Hopefully, I’ll blog with more pictures and happy times at home. Summer is upon us. We have an amazing backyard coming together nicely. I am very hopeful that we will have good times this summer!

MS fatigue sucks!

Here’s how I’ve felt all day…


I pretty much look normal (whatever normal really looks like hehe) to most people on the outside. But many don’t see my cute pink cane in my car (as my backup walking device), nor do they see the pain searing up and down my spastic legs, or the fatigue which forces me to stop every few minutes to rest and recharge before I do that next load of laundry (that reminds me I have one waiting from 2 hours ago, ugh!). They also don’t see the grab bars in my shower. They don’t see the pharmacy of medications I carry in my purse with which I cannot be without in order to function. They don’t see me getting hooked up to an IV once every month (this Wednesday is the next one – wow time goes fast) to get a powerful second-line MS drug because I failed all the first-line drugs. And as I write, I have the problem of insomnia at night because of the painful spasms. Oh woe is me… whatever…

But it could be worse. Hell, it’s actually been worse. I will be coming upon my 2 year mark of being relapse-free. Remission is awesome but I still suffer with the remnants of what this disease has done to my body. I am lucky to “look normal” – just wish I felt that way.