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….
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…
I am very weak. My legs can’t hold me up for long. PT has been working on just getting me up and standing. I never thought something so simple would be so hard. Let me tell you, it is so hard. I try to sway back and forth shifting my weight as I hold onto a walker. I had to sit down again because I have no endurance. One day I was able to get back up once. The other…
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…
Yesterday was the last day of the antibiotics. I have been taking a prophylactic drug from the time I got home from the hospital on March 5th. I was taking Atovaquone. This is an anti-fungal, anti-parasite liquid. It is supposed to be banana flavored. I personally would never eat a banana if it tasted like that. This medication is an antibiotic used to treat and prevent pneumonia. It is given to people that can’t take other antibiotics, have HIV or…
Let’s see if I can get back to any regularity writing a blog. When I was in the hospital, i was given a Fiberoptic Endoscopic Evaluation of Swallowing (FESS). My pneumonia was considered to be caused by aspiration. Aspiration pneumonia occurs when food, saliva, liquids, or vomit is breathed into the lungs or airways leading to the lungs, instead of being swallowed into the esophagus and stomach. https://www.mountsinai.org/health-library/diseases-conditions/aspiration-pneumonia When I left the hospital in January my X-ray of my lungs…
I’ve managed to stay home since my last hospital release on March 5th. Please forgive my silence, it has taken me a while to adjust to the new me. I came home and I was still running low grade fevers up until recently. I’d wake up feeling achy most days. It is hard to try to work on strengthening your body when you feel yucky. I truthfully couldn’t get my head in the right space. I know all the positivity…
I last took a Kesimpta shot on January 19. It is now the beginning of March. I had this dilemma of being behind my shot date in January. After Covid and a UTI that put me in the hospital the first time, I needed to be well before I took my shot. That ended up being about 6 weeks after the last shot Kesimpta dosage instruction is every 4 weeks. I’ve never not taken a disease modifying therapy from the…
