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Shocking to everyone including me

Shocking to everyone including me

I was sitting up at the end of the bed when he got there. I popped right up to stand. My PT therapist said try to take a step. I was standing up with one of those silver walkers. Well, I took a step. It was my first step since the end of December. I then took another and another. I was going forward and back in the small space of my room. I was getting tripped up having to…

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Busy Day

Busy Day

I’m actually writing this on Thursday evening. I had a long day. Since the change in my aides shifts, I am up at 7am. This morning I was up at 5. I had one of those MS symptoms that plague me whenever it is a inconvenient time. My feet were in pain. More like my heels. I felt like pins were simultaneously sticking into both my heels at the same time. Neuropathy. I know it well, but this time it…

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My own discouragement rant

My own discouragement rant

I was determined to get into my comfy chair. Ok getting in isn’t the problem, it’s getting out. The chair is not only low but mushy. I don’t have anything very solid to push myself up to a standing position. I tried to angle the wheelchair in front of me, using the chair’s arms. Unfortunately, that didn’t help either. The end result was being lifted up by both my physical therapist and the aide. I was discouraged. Getting into, excuse…

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Still exhausted

Still exhausted

I woke up yesterday and felt really good. I got up, into my wheelchair and I finally was able to stand on the scale. I held my my balance for a split second allowing the scale to actually show an accurate number. I was 138, fully dressed. I never weighed myself dressed. That is 3lbs from my ultimate weight goal. A goal I never even thought was going to ever really happen. Well I guess there is something to say…

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A week off

A week off

I’m not grey anymore. My daughter dyed my hair yesterday. A grueling experience. Not because of her, but I had to sit in my wheelchair for an hour. I have been really tired this week. On Monday I wrote I blogged I wasn’t having any reactions to my Rituxan infusion. Today I have to admit I might be having a reaction to my Rituxan infusion. I am definitely feeling run down. What is really worse is my hands. I’m not…

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A real workout from bed

A real workout from bed

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

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

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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Too much emphasis on PT

Too much emphasis on PT

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

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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