I played mahjong all day yesterday and I had a great time. Is this the sign? I had a great time. American mahjong is played with four players using tiles stamped with Chinese symbols. The goal of the game is to be the first, by picking and discarding, to match one’s tiles to a specific hand from the annually distributed scorecard published by the National Mah Jongg League (NMJL) and American Mah-Jongg Association (AMJA).[2] Scoring is done by matching the points assigned to…
Ok warning I’m going graphic here because I need to be honest and there is no other way. I have bladder and bowel control issues. For my bladder I take Toviaz which helps me not have accidents but when I have to go I have a very short window of time to make it to a bathroom. Without this medicine I have NO window of time. My bowels are completely different. I can’t take anything and have no control over…
This week is about being happy in the place you are in today. I wrote a blog this week entitled my life today. https://multipleexperiences.org/2019/01/29/my-life-today/. When I’m writing a blog sometimes I don’t know exactly where my blog is going, the words just flow themselves. This was one of those blogs. I had a comment on the blog from someone that simply said “This blog brought me joy”. My reply was, “me too”. When I was writing the blog about my…
I thought I’d write a blog on the update on my van. Unfortunately, I did not get as much in grants as I was hoping for which was somewhat disheartening. It was my own fault because I just got a number in my head that was delusional. I was able to secure $5,300 in grants from the MS Foundationhttps://msfocus.org/ and the MS Hope Foundationhttp://www.mshopefoundation.org/. I was denied from the Chive Charity https://chivecharities.org/ and the National Multiple Sclerosis Society doesn’t do…
I never thought at the age of 47 this would be my life yet I remember being scared when I was diagnosed of being in a wheelchair. I knew what multiple sclerosis could bring about and I feared that when I hit the 10 year mark everything would go downhill rapidly. That wasn’t the case because there were medication developed that helped to slow down the MS progression and more and more have been developed. My life took on a…
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…
