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Tag: ms difficulties

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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A lump in the bed

A lump in the bed

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

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

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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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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Not a happy New Year

Not a happy New Year

Hello everyone, Happy New Year. I know it seems like I disappeared but unfortunately I had legitimate reasons. I ended up in the hospital last Thursday with Covid and a UTI. It wasn’t really the Covid that put me in the hospital it was the combination of the two infections. I was so weak I was having difficulty sending a text message. I spent New Year’s Eve sleeping in a hospital bed. So much for 2022 being my year. I…

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Remaining hopeful it will help the spasticity

Remaining hopeful it will help the spasticity

Inconclusive. My bladder test was inconclusive. They said that the sample contained bacteria in their that couldn’t have come from the urine alone. I was thrilled I got urine in the cup. That was a challenge in itself for someone with multiple sclerosis and bladder issues. I even was able to use the little handy wipe they give you before you give the sample. I was so proud of myself that day. So much for that gold star. Thank goodness…

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Who am I without multiple sclerosis?

Who am I without multiple sclerosis?

I was thinking the other day, what if there was a magic pill to cure multiple sclerosis? What if I can take something that not only stops future disability but cures current disability? What if tomorrow I could actually walk again? I have spent half my life with MS. It is part of my identity, even though I pretend it isn’t. Who am I without my disease? I have this recurring dream that I’m working but still collecting disability. In…

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Monday morning again…

Monday morning again…

We arrived at Monday once again. I feel like I am on a fast track through these days, weeks, months and years. That is saying something considering most of my days are spent in front of the TV. I am far from highly stimulated most days. Yet the days are going fast. I know I’ve said this many times before. I’m sorry I’m repeating myself. I just find it amazing sometimes. I got to spend a few hours with my…

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