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Tag: living with a chronic disease

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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Live from the living room floor

Live from the living room floor

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…

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Infusion aftermath

Infusion aftermath

Yesterday was a very rough day. I’ve been sleeping good so that’s a plus. I was able to exercise because that is never an option. I would say around 12 o’clock it hit me like a ton of bricks. Maybe not even bricks, more like a Mack truck. I just was fatigued in every single muscle and joint. Even moving to go to the bathroom was so difficult. Anyone with MS knows that feeling. However this one was like times…

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How do you feel after an infusion?

How do you feel after an infusion?

It’s funny because all my complaining last week about NOT getting my infusion leads to this: I feel awful. Please, please give me my medicine. Pump me up with all this shit so I can feel lousy.  kind of makes you wonder what the hell I was I fighting for. All anxiety for four days straight. All so I could feel horrible. Rituxan Infusion Finally Done but still wasn’t smooth. It never fails someone always asks me, does it…

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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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Ocrevus Commercial

Ocrevus Commercial

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…

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Urologist visit

Urologist visit

I went to the urologist on Friday to discuss Botox in the bladder.The last of the week trip to urologist Botox for the bladder. What a genuinely honest and patient doctor this was. He came in and knew that I needed questions answered and was prepared to sit and talk. Not only was that nice of a doctor in general but it was nice of a doctor during these times with Covid. He was very honest when he answered and…

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The last of the week trip to urologist Botox for the bladder

The last of the week trip to urologist Botox for the bladder

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,…

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