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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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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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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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High heart rate

High heart rate

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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Rocket Ship Yoga

Rocket Ship Yoga

My family means the world to me. They have been my support system for my multiple sclerosis since day 1. However, their support over the ordeal with the Covid and the pneumonia was beyond anything I have ever felt. It actually brought some of my relationships closer. Especially with my sister. She became the first person I text every morning in the hospital. We continued to do this even when I got home. In all the time I was sick…

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Multiple Sclerosis symptoms worsen

Multiple Sclerosis symptoms worsen

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…

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Rituxan postponement

Rituxan postponement

Today I am getting blood work done. My specialist wants to see a few things. First, my B cell counts. With the hundreds of blood tests I’ve had done in the hospital, that wasn’t done. There was no need to break out the specific white blood cells for a pneumonia. The second thing is my immunoglobulin blood test. I was running very low in the hospital throughout the few months. The pneumonia certainly could be to blame. However, every time…

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Finally finished with antibiotics

Finally finished with antibiotics

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…

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The new me…under construction

The new me…under construction

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…

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After the hospital, leaving the new me…

After the hospital, leaving the new me…

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…

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