Wow, that was fast year. Happy new year to everyone, have to start with that. I hope everybody had a safe and wonderful evening wherever you were. I have to be honest, I was asleep before midnight. I think this is the first time I fell asleep on New Year’s before midnight. I was always so happy to be done with the current year and hopeful that the next year would be better that I guess I had to see…
It’s 20 years that I’ve dealt with my multiple sclerosis. When I first started doing research on my own illness, it was stated that most people go into the second stage of the disease after about 10 years. The second stage of the disease being secondary progressive MS. Most people start off in relapsing remitting and, at the time, it was said that 80 percent of people in this stage will go into secondary progressive around that 10 year mark….
It’s the hump day. That middle of the week where it’s all downhill to Friday. I’ve been up since roughly 5:30 this morning. I’m exhausted. I couldn’t sleep. I should change that, I couldn’t fall back to sleep. Not sleeping is like an instant bad day with MS. I just wrote the ticket for the day. Not that I could’ve controlled it, I just know how my body is when I don’t sleep. My daughter was up all night studying…
I blog every day. However I have to admit, some days I have no idea what to say. I just start writing and whatever comes out, comes out. I ended up putting a title on it at the very end. Today is one of those days. I can write about packing and how tired I am, but I think I’ve expressed that I’m about 8 blog posts already. I made an appointment with my neurologist on Thursday to discuss what…
It’s been four days that I have owned the condo. However it’s only been three days that my new scooter has been in my condo. I have to admit it, life is a lot easier in the scooter. I’m getting tired doing the walking. Every day is a struggle and it’s just getting harder and harder. My steps are getting slower and slower. I do the simplest task and I am just completely wiped out. Then I have to walk…
Very frustrating. I’ve now done two separate blood work tests and no answers. The bloodwork my neurologist requested showed six different deficiencies in all my B cells which was expected. That’s what Ocrevus, my main medicine for MS, is suppose to do. The rest of the panel including my thyroid was fine. Two days later bloodwork was drawn from my OB/GYN. Here I was checking to see if I was possibly in pre-menopause. When she called me she informed me…
The first snow is supposed to fall today in New York. I always loved the snow. I never liked driving in it but I loved to look at it. I love when it’s quiet and everything is white. You look outside the street the world just seems transformed and peaceful. Everything appears so different. However after that snow, what a mess. There are huge piles of snow because the plows. There are always parking spots that are taken because of…
You ever have those kind of days where everything falls, things break, or everything just seems to not go right? That’s my day went yesterday. It wasn’t things that I did necessarily. It wasn’t my MS and my hands couldn’t hold something, something that happens often. It was different things around me. It was going to the doctor and having to sit there after they change my appointment from 2:30 to 1:30 and I ended up not being seen until…
One of the greatest things about my blog, is the feedback I’ve gotten from people that have known me for years. It’s the first time they really seen into my life on a daily basis. The truth is as soon as the how are you feeling question is asked, I immediately, say ok, how are you? I mean really what was I going to say to them, I had an accident today I peed my pants or or maybe I…
I always call it a scooter, but technically I guess it’s a wheelchair. I really wanted the hoverRounds MPV5. When I called it was over $4000 and of course my insurance wouldn’t cover it. My thinking was I was going to wait until I became Medicare eligible and get it then. Medicare pays for it. The problem with that outlook is first I’m not gonna be eligible for Medicare until, two years after the start of my disability which is…
