Today my insurance company is sending in a nurse to do a six month review. This review dictates my aids hours and you just never know what is going to happen. I was changed to this plan back in July of 2018 when I became Medicare eligible. They continued with the same level I was currently receiving. My aids hours are actually covered through my secondary plan which is a Medicaid HMO plan. I have never had a problem with…
Yesterday was an exciting day. My step dad took me to New Jersey to meet with a gentleman from Mobility Works. This was another handicap van dealership. What I liked about them is they had a much bigger selection of used vans. I now realized I had to get a used van so it was important to have choices and options. The company I was communicating with from the beginning just didn’t have that access to that kind of inventory….
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…
I am due in March for my full dose infusion of Ocrevus. A process that has never run smoothly and has caused a lot of aggravation. https://multipleexperiences.org/2018/09/13/no-ocrevus-infusion-today/ https://multipleexperiences.org/2018/09/21/no-ocrevus-infusion-yet/ Those blogs were only my issues with the last time I had the infusion. I had issues every time my infusion was scheduled. Now I’m going back to Rituxan at the full dosage. Rituxan which is technically not approved for MS but I’d prefer to be on for safety reasons. I’ve explained…
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’ve been up since roughly 4 AM. I couldn’t even tell you why. I think I’ve watched an entire season of friends before I finally gave up and got out of bed. I suffer from headaches all week this week I’ve been home for three days because my aid’s son was sick. I’ve watched a lot of Netflix including part 2 of Making a Murderer, the Staircase and the Ted Bundy Tapes. I worked out every single morning even with…
It’s been a while but I’m coming back to my P90X workouts from Tony Horton at Beachbody. https://www.beachbody.com. I have been a fan of Beachbody and their trainers for a long time but my favorite was always the P90X routine. I had these great bowflex adjustable weights These weights were great you could dial them from 5 to 52 pounds each. This was wonderful when I could lift a 20lb press or do squats with 30lbs in each hand, not…
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…
