First time back in physical therapy today. I should get double activity points on my Fitbit from this and it registers as nothing. I was there for almost 90 minutes and it’s all exercise that it so difficult to do. I mean I’m struggling doing leg lifts with a 2lb weight on my ankle. My sit to stands needed assistance from the therapist so I could either get up from the chair or not fall over once I’m standing. Then…
I’ve had a week to rest since my vacation and I have to say I needed it. I did do my Beachbody Cize workouts every morning. I did get food delivered and cooked. I did reorganize myself,but other than that, I rested. Today I’m going to occupational therapy. This is the easier of the therapies for me because it doesn’t normally wipe me out for the day. I can’t complain my MS symptoms have been somewhat mild this week. Yes,…
I received an email yesterday about a new drug for progressive MS called Ocrevus. https://www.cbsnews.com/video/new-drug-provides-hope-for-those-suffering-with-ms/I don’t get it, I’ve been on Ocrevus for almost 2 years already. Is it really still new news? I wish I could rave about this drug that it has done wonders for me, but it hasn’t. I haven’t had any relapses and for that I am thankful but it certainly hasn’t halted my progression. I am worse today than I was two years ago. That…
There was no bad weather in NY that my vacation was cut short. However, today it is 5 degrees with a real feel temperature of negative 15. Yet I’m comfortable and was freezing in Mexico, what was that about? My trip was great but there was things that would have made things easier for me I guess I know now if there is ever a next time. One of my biggest obstacles was the bed. They gave me a step…
I fell asleep in the sun yesterday for a short time. I was awoken by my brother in law blocking the sun from me. He was sent by my mom who was scared I was going to fry. Well in typical Jamie fashion my face and chest burned. Today my face has already lost its color and my chest is bright red. Forgive my lack of makeup and frizzy hair. I just got out of the pool and shower shortly…
Those were the words this morning from my mom as she watched me swim in the pool. The pool which was so cold I might add. I was determined to do some laps this morning despite the near frigid temperature. I still swam for roughly a half hour. My mom, the sport she is, got in the frigid water with me so we could walk the pool. This particular pool gets shallow towards the middle and deeper towards the end….
It’s been less than 48 hours that I’ve been on vacation and my multiple sclerosis has not been easy. Half of my clothing I’ve worn so far has been washed due to bladder issues. Not a fun way to start. Really MS, you couldn’t keep that shit together for a few days? I’ve had countless people helping life me feet up small steps or onto golf carts from my family to hotel staff because my legs are far from cooperating….
It’s finally here a trip that’s been planned for years. It’s a family trip that was supposed to be for everyone’s big birthday celebration. My mom’s 70th, step dad’s 65th and my 45th. Since I just turned 47 you could see that didn’t work out. However now we are celebrating their 40th anniversary and we are leaving Sunday morning for Mexico. One week with my family in a sunny Mexico. I’ve never been there but everyone else in my family…
I have such issues with shoes now. I miss the days I could wear my boots with chunky heels. I never could wear stilettos but I could get away with those. Now I can only wear sneakers or wide shoes that are completely flat. I use to wear Keds sneakers all the time. Quick slip on shoes that I had no issues putting on myself. Now, thanks to swelling that is still unexplained, they are too small. I wear my…
My neurologist from early on has done MRI’s of my spinal cord. It is where most of my MS activity has been over the last 21 years. My first major attack back in 1998 left a large lesion in my brain but since than it has really all be spinal cord. So what does that mean? Well I asked my doctor the same question. He said spinal cord is why I have no cognitive issues as I’ve progressed. He also…
