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Tag: living with a chronic disease

Two year renewal of Multiple Experiences

Two year renewal of Multiple Experiences

It’s official, today I renewed my blog’s domain name for another two years. This also renewed my iPage contract that my blog is hosted through. I made my commitment to my blog, to my readers and to myself. That means I’m going to be around every day for another two years. I have to admit, I’ve been a little lazy with this blog. I haven’t put much effort in lately. It wasn’t done on purpose, it was just a tough…

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The video that can change your life

The video that can change your life

Now it’s time for the big reveal… In this final video, Gabby shares a BIG invitation. https://xh111.isrefer.com/go/sjmdigital2018/Youtwohearts Her invite is for people who want to inspire others by doing what inspires them. People who want to gain the confidence to own their purpose and take action on their dreams right now. People who feel called to speak out, be heard and create movements. In the video, Gabby invites you to join her Spirit Junkie Masterclass Digital Course. https://xh111.isrefer.com/go/sjmdigital2018/Youtwohearts This course…

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Bad MS day

Bad MS day

Yesterday was a tough one. From the moment I woke up, to the moment I went to bed. I even slept for 12 hours. It started first thing in the morning, I fell almost to soon as I got out of bed. The spasticity in my body was at an all time high. I really wanted to take a second neurontin, but I know that can make me very loopy and would make my walking even harder. Since I was…

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Other weather conditions that impact MS

Other weather conditions that impact MS

I had therapy yesterday, and it was harder than it was the other day. I happened to be talking about the difficulty with a couple other people and one of the therapists. She said she can’t discuss diagnosis but we could. Which made me automatically know that the people around me all had multiple sclerosis. We all said “Yup I have MS” and we all we agreeing how we were having a “tough” MS day. Is it possible for people…

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“Fear” of walking with canes from the rollator

“Fear” of walking with canes from the rollator

My MS therapist was here yesterday. She was doing some balance stuff with me in the pool observing my core. She said you should be walking now without the rollator. Not without help mind you, but with canes. My back is so straight I should be able to be upright, not leaning over with the rollator. So that is the new game plan, to start teaching my legs to walk again with two canes for balance. We did a practice…

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Ocrevus infusion a few months later

Ocrevus infusion a few months later

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…

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The sounds of an MRI

The sounds of an MRI

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….

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Another day, another battle

Another day, another battle

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…

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My disabling MS attack in 2014

My disabling MS attack in 2014

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…

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A funny MS story…you have to find the humor

A funny MS story…you have to find the humor

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…

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