My handicap van, one of the most life changing things I was able purchase. This took months of research to find grants. Then after finding grants I had to first apply to each and every one of them. Coordinate the grants with each other. I had a fundraiser going in the middle of all of this trying to raise additional funds. I still had to find a van and negotiate a price. Finally I needed to get a car loan…
I wrote this blog post on November 7, 2016. Almost 4 years ago to the day. I was originally going to just link it in this post when I realized I would probably be repeating the same general things. Obviously Covid has made my MS daily activities null and void but I’m not complaining. Truthfully my MS is much different 4 years later. I’m mostly in a wheelchair now. I’m in a new place, not my apartment anymore. Things are…
Yesterday was so rough. Like complete physical exhaustion rough. Wishing I didn’t have to use the bathroom rough. Each time I had to get up was so much effort. Is this still from the infusion? Or is this from the weather change? We’ve had some crazy weather changes over the last week in New York. One day it was 70° then all of a sudden it dropped to 50° I actually had the heat on one day. I was bundled…
I’m chatting with my stepmom yesterday and the conversation about my aide comes up. First like everyone else is the question of an aide for the weekend. I am still not there as I’ve told every other family member who wants me to have the coverage. Then she asks me what about at night? To which I make the mistake of replying, “I don’t need an aide at night. I haven’t had a fall in ages. ” I immediately say…
I think I’m through the worst of the infusion side effects now, more or less. I didn’t have the greatest weekend. By the end of the days my legs felt very weak. I did sleep on my chair both nights. Thankfully I did because Saturday night, without my water pill, I was still up every two hours to use the bathroom. My legs would have been too weak to get me up and down into my bed. I made the…
This blog is coming to you live from my living room floor. I did not make my transfer well after my exercises and slid off of my comfy chair. I was in perfect position to get myself up but knew I had one shot at it. My legs failed and back down I went. After flopping around on the floor trying to change positions, I finally gave up. My aide will be here soon I don’t think my puppies mind…
I called the pharmacy first thing this morning and they reassured me that my Rituxan will be delivered first thing tomorrow morning. I am not going to call my infusion nurse and I’m going to hope for the best. Normally my infusions don’t go smoothly. There always seems to be a problem somewhere through the process. When the pharmacy changed I thought, great another infusion to give me agitation. Then it was all arranged weeks in advance. I was shocked….
I never watch TV through my TV carrier. I always watch through my Firecube. No matter what it is, unless it’s something that I record, I’m never on my TV. That being said, it’s also very rare I see commercials. However I was catching up on old Bravo shows that I neither recorded or watched while they aired. On the Bravo app, there’s commercials. When you’re watching an entire season of some thing you end up watching a lot of…
It’s Friday, this was such a long week I am very happy to be here. I couldn’t imagine having to work. I’m dreading driving and I only have to go down the block today. This week has definitely been an abnormal week for me. Starting with my traumatizing weekend The horrible weekend tale. Multiple Sclerosis at it’s worst, A new aid My new aide, PT therapy Occupational therapy in my home and today is the urologist. Compared to other weeks,…
I’m very happy to report that my new aide is extremely nice, has been helpful but most importantly likes my dogs. If the person couldn’t get along with my dogs then they couldn’t get along with me. It’s only been three days now compared to my last aide of 3 years so of course there is an adjustment. Thankfully, it is not at all as difficult as I thought it could be. She lives with her sister and brother very…
