I’ve been asked this question quite a number of times so I thought I’d address this in my blog. I’m asked, do you feel any better since you’ve been on Ocrevus? Where I’d love to give a wonderful answer here, the answer is NO. however it’s also very important to answer, I also don’t feel worse. When I was on Tysabri, I was still feeling worse month to month. That’s why we made the switch originally to Rituxan, which is…
I’ve have a MS fitness trainer that I’ve been working with for about a year and a half now. She would come to the house and get my body to move in ways I personally wouldn’t willing force my body to do. It was hard. She saw where my body was weak and would attack my body in exercises, from different vantage points, to try to manipulate the muscles to do certain movements. When I moved to my new condo,…
I didn’t sleep well yesterday. Actually I barely slept. It’s been a very long time since I had a night like that. I don’t do well with lack of sleep, most MS patients don’t. For me personally, lack of sleep can create a very bad day. Luckily, I’m home today. I’ll be cooking in the morning. This afternoon my air conditioner/heater in my bedroom is being fixed. I end today with my MS fitness trainer in my pool. I have…
In having MRIs for 20 years, you get used to hearing the sounds. To me, they are extremely meditative. I end up making words to the beats of the sounds and go into the deepest meditations I’ve ever had. I’ve had several of my biggest epiphanies in MRIs. Each section they do, has this specific to droning sound. I find the more I concentrated on words to the sounds the more relaxed I become. I know this probably sounds weird….
Tough morning so far, and I’ve only been up for an hour. You ever have one of those mornings where everything seems to happen all at once? I know, everyone has them. I got a lot done it in a very short time. I got a letter from state financial aid, for my daughter, that I wasn’t approved. I had to call and it turns out I have to submit a revisal because I’m on disability. Great!!! I just need…
It wasn’t always a battle. I remember at 40 I was still walking pretty good. I’d have a limp every now and then, when my legs were tired, but an outsider would never know. I’d have occasional bathroom accidents that I used to hide, but back then it was easier. Most of my symptoms were invisible. My balance was never great and I wasn’t running any marathons. Hell, I wasn’t walking any marathons either but I was nothing like I…
I’ve written in my blog, some time over the past week, that my knees are so sore from crawling around when I’m on the floor and I have to find a place to help me stand up. Yesterday was just a bad MS day. I was frustrated, I was having difficulty walking and it just seemed I ended up with my knees down on the ground, not in falls, but I had to keep crawling around to help myself stand…
Forgive me, I’ve been nominated by more than one person for this. I normally don’t do the challenges because they’re difficult on my hands to set up but this one seems a little easier so I’m going to set up with my favorite quote and thank the people that nominated me. First was Jen from Tripping Through Treacle https://trippingthroughtreacle.com/ She, like me, has had MS for over 20 years. She is amazing. She blogs about her strength, what she does…
I had an OT evaluation yesterday. 0T stands for occupational therapy. The difference really between physical therapy and occupational therapy is occupational therapy deals with more fine motor skills. Physical therapy deals with more of the physical stuff. I never realized my health care covered 20 days of both therapies. I thought it was 20 days total. So this will be the first time in OT. For 13 years, I worked in a nursing home as a financial billing office…
I don’t know how babies do it, they spend months crawling around before they walk. Unfortunately, I’ve had to learn to crawl again. It’s part of the last five months of physical therapy. Crawling forward and back every time I was there. Why? If you don’t have MS you might not know why, if you have a MS you unfortunately know why. It’s because sometimes when I’m on the floor I can’t get myself back up. This could be because…
