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Author: Youtwohearts

A day in the life with multiple sclerosis.
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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Rocket Ship Yoga

Rocket Ship Yoga

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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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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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Exercise, standing and Bionic Gym

Exercise, standing and Bionic Gym

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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…

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Multiple Sclerosis symptoms worsen

Multiple Sclerosis symptoms worsen

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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

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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

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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

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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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