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…
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…
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…
This is a super valuable link. I had this on my post yesterday and I think it got a little lost. The title wasn’t correct to attach this with. This shows you everything out on the market currently for MS. It shows the things that are currently in clinical trials as well as new research being developed in regards to MS. It is everything you need to know that is available, coming and being developed at this moment. https://mymsaa.org/publications/msresearch-update-2018/ For…
Marked by May 30th. This day is to bring the MS community together. #bringinguscloser This day is for us to share our stories, raise awareness, and come closer to finding a cure. Today I’m going to attach a 2018 MSAA’s research update. It has so much information. It has all the current drugs, experimental drugs and drugs in clinical studies. A great research tool for anyone with MS. https://mymsaa.org/publications/msresearch-update-2018/ Full downloadable version https://mymsaa.org/publications/msresearch-update-2018/download/
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…
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 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…
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…
