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Tag: ms difficulties

Awake way to early

Awake way to early

It’s 9am and I’ve already showered, worked out for 54 minutes, took care of my dogs and spoke with my mom. I’ve been up since roughly 6 when my right foot started twitching. Even though this video was taken when I was awake and in my chair, it is exactly what happens anytime and anyplace my leg twitches. Now you tell me, could you sleep through that? After the first 5-10 times it actually starts to hurt almost. My foot…

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Physical therapy 1st appointment

Physical therapy 1st appointment

I can’t say enough good things about this guy. He is just a person size package of warmth and healing. It is nice to be the only one the therapist is focused on during an hour session as well. Even though my occupational therapist was from the same company, he was no where near the caliber of my physical therapist. My hour session were never an hour more like 30-40 minutes at best. I wasn’t complaining. He was more like…

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New purchases to help and aid

New purchases to help and aid

I figured something out once again out of dumb luck. Yesterday morning when I was getting out of bed, I actually had a slide onto the floor. When I wake up sometimes I have major spasms and my legs just don’t bend the right way. Yesterday was one of those days. Sometimes I’m able to get myself up without needing to actually bend my legs, however yesterday I wasn’t so lucky. It was first thing in the morning too and…

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New physical therapist

New physical therapist

I had my physical therapy evaluation yesterday at 3 o’clock. I thought the time alone would be a complete disaster. I worked out yesterday from 9 to 10 AM. I had my beautiful sister here from about 11 to 1:30. I I thought I was exhausted but oddly enough I really had a second wind. First I must honestly say I loved this guy. He comes into my house and the first thing he does is greet my dogs. The…

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Safety first doesn’t mean I’m safe

Safety first doesn’t mean I’m safe

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…

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Cold outside and I’m sweating….

Cold outside and I’m sweating….

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…

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My next big project/accommodation

My next big project/accommodation

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…

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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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