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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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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 Tomorrow

Rituxan Infusion Tomorrow

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….

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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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Misheard song lyrics

Misheard song lyrics

I could write about my horrific Saturday night and Sunday morning I will write about it, eventually. I honestly am completely traumatized by the events that took placed. Yet I will tell the tale because i promised when I started this blog complete honesty. However I am just not ready to retake the tale yet. That’s how bad it was. So instead I’m going to leave you with a video that my dad sent me Perfect video for a great…

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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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I’m taking a poll on napping

I’m taking a poll on napping

Amazon’s been promoting shark week on discovery channel for a while now. However, now the promo is Tyson versus jaws, rumble on the reef. Is this really what we’ve lowered ourselves to? I actually like shark week. They’ve actually had some really interesting programs. I think my stepdad’s told me it is the longest running cable event in history. Do really need to be promoting it alongside Mike Tyson in his boxing gloves? OK, maybe it’s just me. It is…

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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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