I try to do the safe things, I really do. Even when I’m trying to be at my safest I still have issues. Let’s take last night as an example. My dad called as I was about to go to the ladies room, so I told him I’d call him back in a minute. On my way back, i safely maneuver my wheelchair directly in front of my comfy chair to make my transfer. Easy and safe. As I was…
It’s 48 degrees out and I’m in a complete sweat. I haven’t even worked out yet because I have therapy this morning. I am sitting around waiting for my therapist. I have opened my windows but the breeze wasn’t enough, I just turned on my fan. I’m dressed in a thin pant and a t-shirt. WTF!!!! I just got a call my therapist is running late, thank goodness. Hopefully I can get myself cooled down before he gets here otherwise…
My brother does this every year and every year with me in mind. Please consider donating to a cause that is near and dear to me and my family plus too many other suffers. https://mssociety.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=16843&cmr=5282CE675756&language=en Dear friends, Each year for the last 12, I’ve raised funds for BikeMS, to directly help those affected by this terrible disease funding research by the MS Society. This year, I’m falling short in my fundraising goal. This is not surprising – people are out…
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 truly want to write happy, uplifting blogs but I haven’t been able to do that lately. For every good day I’ve been having a few rough days following. It seems like I’ve been having more rough days than good days. Each time I think I’m through the worst of it, like my infusion, something seems to happen. If it is a tough night sleeping or a great night sleeping, I’m waking up tired. Doesn’t seem to matter. Today I…
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…
