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My four walls of multiple sclerosis

My four walls of multiple sclerosis

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…

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Weather, Infusion or just fatigue

Weather, Infusion or just fatigue

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…

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Jinx

Jinx

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…

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Starting to feel more like myself

Starting to feel more like myself

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…

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Rituxan infusion scheduled in a week

Rituxan infusion scheduled in a week

I can’t believe it’s been six months already. Well I guess it has because all my reminders went off. Actually about a week after my last infusion I started receiving phone calls to set up my appointment. It was crazy. Actually I thought CVS specialty pharmacy was crazy. I never used them for my Rituxan or my Ocrevus so I was so confused why they kept calling me. Sure enough another change with my insurance. Great, because those have always…

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Occupational therapy in my home

Occupational therapy in my home

There’s been a lot going on this week and I’m not sure where to begin. After being traumatized this weekend, it was hard for me to even focus on everything that was happening, and a lot was happening. My new aide started on Monday, I got an OT evaluation to start that twice a week in the house, and Mikayla left. I’m also going for a urologist appointment on Friday to discuss the Botox in the bladder. I haven’t decided…

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The horrible weekend tale. Multiple Sclerosis at it’s worst

The horrible weekend tale. Multiple Sclerosis at it’s worst

What I don’t understand is how are you supposed to prevent things from happening? If there was something I could’ve done, I would’ve done it. What is a person with a disability supposed to do when they are alone? I just can’t understand how this situation not only could’ve been prevented but could’ve been done with any dignity whatsoever. This is the part of multiple sclerosis that I find so unfair. The embarrassment and the shame that I felt is…

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A wheelchair function helped me off the floor

A wheelchair function helped me off the floor

My daughter is packing because she’s leaving today not tomorrow. My aide of three years had her last day with me yesterday. My new aide starts Monday and is working 11-7. Not exactly the hours I wanted to change them too but it is still is better than my original hours. I can now do my normal morning routine. I prefer working out when no one is around. I always did. Now I’ll have the morning to myself. What could…

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Fatigue, workouts, the MS gym and stuff

Fatigue, workouts, the MS gym and stuff

Good morning to all. I just sat down from my morning exercise. My body certainly feels it but my heart rate didn’t reflex the same results. I have not taken one day off since I started the MS gym program. I just changed my workouts and incorporated the gym too. The last time I didn’t close my exercise circle (the green circle) was back on June 25th. When I complete this week, I will have completed the program I signed…

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Having issues with my new wheelchair

Having issues with my new wheelchair

There are so many good things about this wheelchair but unfortunately there are a few bad things. I have been consistently in the new wheelchair now for a couple of weeks. I waited to use it for a couple of weeks after I got it. Between breaking the mirror and Minx being so tiny, I couldn’t do learning a new wheelchair and avoiding him at the same time.New and old. In using the chair I realized some major issues. The…

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