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…
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…
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…
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…
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…
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…
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…
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…
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…
I’m better. No more fevers. My breathing is back to normal. I’m completely done with antibiotics. I have no more signs of the pneumonia. Great news. Yes it is. Yet the aftermath is as I expected. I was weakened from being in a bed for 1 1/2 months on top of my multiple sclerosis symptoms worsening. I had no time to adjust to my new body because I was so sick. I wasn’t focusing on my MS while I had…
