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Tag: Multiple sclerosis

A real workout from bed

A real workout from bed

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I’m happy to report I haven’t felt any side effects from the infusion the other day. https://multipleexperiences.org/2022/05/06/rituxan-infusion-successful-2/. I might feel slightly more tired but it hasn’t stopped me. On both Saturday and Sunday, I did an actual workout from my bed. I put on one of my favorite cardio exercises programs from YouTube. It is a workout from Adapt to Perform. https://youtu.be/qbFvZEPTXDk. I had my Bionic Gym on at a high intensity, picked up a pole and turned on my…

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Rituxan Infusion Successful

Rituxan Infusion Successful

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Well I finally was able to take my MS meds again. Last time was January 19. That was Kesimpta. I made the decision to go back to Rituxan after using Kesimpta for six months. I had 3 UTI’s, Covid and a pneumonia within that 6 months. I didn’t think it was the drug for me. I have had issues with Rituxan in the past, skin issues. I can’t say all my infusions have been smooth sailing. I just never needed…

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Weekend changes

Weekend changes

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The switch with the new aide actually went pretty flawlessly. My current aide actually had a lot to do with that. She really took the time to show the new aide around. She didn’t have to do that. It wasn’t an aide from her agency. It was an aide that was replacing her. I think I was more impressed with her this week than I have been the entire time she’s been with me. I actually was a little sad…

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Positive Attitude is a Choice

Positive Attitude is a Choice

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Another week, another month. I can’t believe it is May already. I feel like I missed something, like two months. It’s a bizarre feeling, 4 months went by and I did nothing, but they flew. I have been in bed for 4 months!!!! When I wasn’t physically sick, I had some dark days mentally. It was very easy to to give up. It still is. In a conversation I had with both my daughter and my life coach, I make…

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Too much emphasis on PT

Too much emphasis on PT

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I didn’t write it but looking back at my episode with physical therapy last week https://multipleexperiences.org/2022/04/22/breathing-issues/, may have been a panic attack. It seems that this week things aren’t going much better. I was able to stand right up on Sunday. I got into my wheelchair. I ate dinner at the table for the first time in ages. The next day I couldn’t stand up during physical therapy. This was the third visit that I felt was wasted. Medicare only…

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Things need to change

Things need to change

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I actually got out of bed and ate dinner at the table last night. I am tired of being in this bed. I might not have endurance. I might not be able to take a step. I can usually transfer to my wheelchair with some assistance. Key word is assistance. The aides that I currently have, that “assistance” is questionable. My weekend aide is lovely but her English isn’t good. I would have to translate instructions to her for everything….

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Breathing issues

Breathing issues

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On Monday something strange happened with my hands. I actually shouldn’t say strange because this symptom happened every time my fever spiked over 102 degrees. My hands became claws. I call them claws because they fold in and makes it very difficult to grab and pick things up. The better definition lies in this post. https://multiplesclerosis.net/living-with-ms/shaking-curled-claw-hand. I couldn’t hold my fork eating a fruit salad. I tried to eat a muffin and I dropped the thing 4 times before I…

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High heart rate

High heart rate

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I am very slowly getting some strength. The key word there is slowly. I knew I would need to have a lot of patience. I just thought maybe there would be a little muscle memory. Unfortunately, my problem was because of muscle atrophy, not muscle weakness. It is not so easy to rebuild muscle 24 years into your multiple sclerosis life. I couldn’t maintain the muscle I had before I ended up in the hospital. My disability always got worse…

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Avoiding brain mush

Avoiding brain mush

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I have been expanding my mind. I am still watching mindless television but playing games too. I play dordle and wordle online daily. I even downloaded an app to play wordle throughout the day. I also love Sudoku. I’m good at them too. I play the hard or expert levels. It can take me an hour to play an expert game. I love the challenge. I just want everyone to know I am not completely wasting my brain away. I…

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A lump in the bed

A lump in the bed

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My life has changed a lot in the past few months. I went from independent to completely dependent. I can’t do the simplest of things anymore. I can’t just get in my wheelchair and open the refrigerator for my ice coffee. I can’t just grab a sweatshirt from my closet. Hell I can’t even fix my sock when it gets turned around on my foot. A very big pet peeve of mine. I was limited in my dependence prior to…

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