I fell on Friday and slammed my head into one of my hangings on my lower cabinets. I was stunned for a few seconds when it happened. Everyone said “where was your aid?” She was right in front of me but it is difficult to catch someone when they are falling and she wasn’t close enough anyway. Technically she isn’t even supposed to catch me as per her agency. That part I can’t understand but she does anyway. My head…
It’s Valentine’s Day here which always marked 3 things for me: The lover’s or lack of one Holiday The weekend I moved into my first house with ex-husband The start of a major MS attack that lead to my diagnosis less than a week later Today marks 21 years ago that I was diagnosed with MS. Crazy!!! Almost half of my life I’ve spent with MS. It is hard to remember the times without the disease. Maybe that’s why I…
Wasn’t my finest dexterity day. My fine motor skills weren’t so fine today. I haven’t been to occupational therapy in a few weeks and I think it showed. It was rough today. I wanted to take the peg and tweezers and throw them across the room. It looks so harmless in the picture but we don’t use this huge tweezer. We use one of those tiny things you’d use to pluck your eyebrows. On a good day this is extremely…
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…
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…
