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Tag: diagnosed with MS

A week off

A week off

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…

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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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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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My neurologist visit

My neurologist visit

Well yesterday was a visit to my neurologist. I want to thank my pseudo uncle for driving my van. I am not so comfortable driving on the parkways anymore. My first words to my neurologist were “did you miss me?” I have been coming to see him for almost 24 years. I just turned 50, that is almost 1/2 my life. He has been on my multiple sclerosis journey from day 1. He was the neurologist that told me I…

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How do you feel?

How do you feel?

I had a really good birthday day. I woke in a very cheery. I just stayed that way all day. How could I not? Every second I was either on the phone with someone wishing me the best or answering a text. I felt so loved. I was exhausted by the end of the evening from talking. However, I just felt enveloped in a gigantic heart bubble. It was pretty amazing. Worth turning 50. On Tuesday, my aide was off…

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A tired rant

A tired rant

My daughter came home. Her health insurance is still in NY and she needed to see the “female” doctor. She decided to come home Wednesday evening because she was able to get an appointment for Thursday. Otherwise she would have had to wait until some time in December. She has to go for a sonogram before she leaves Friday morning. I am just happy I got an extra day to see her that was unexpected. I just love her face….

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Since my mom’s 50th surprise party

Since my mom’s 50th surprise party

Tuesday was a beautiful day outside. I was able to once again open windows and let some fresh air flow through the house. A rare thing in the second week of November. This is my favorite time of year. I think I have a blog post every fall saying just that. I love that there are still boats in the water. I love losing myself watching the water as the boats pass. It is always my peaceful place. The nice…

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Put on a happy face

Put on a happy face

Daylights savings was Sunday morning at 2am. I am waiting for this to finally end. I know that there has been legislation within the courts. I also know that each state within each time zone has to approve it to finally do away with it. https://www.google.com/amp/s/amp.usatoday.com/amp/6233980001. This weekend we gained the hour. I was up at my normal time. The clock might have said 7:30 but my body knows it is really 8:30. So do my dogs. Now it will…

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Bike MS 2021

Bike MS 2021

It has been another fast week. I keep saying that every week. I think time is speeding up and I am really not looking for any speeding tickets. I am, however, ready for my sweatshirts and warm pjs so the 70 degree weather can go. I am ready to be bundled up with hot chocolate again. While I’m thinking about bundling up my brother has been out biking getting himself ready for Bike MS. I always think to myself during…

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Positive quotes for multiple sclerosis

Positive quotes for multiple sclerosis

I had a lousy physical therapy session yesterday. Actually pathetic was more like it. Lousy multiple sclerosis day and I have no idea why. My physical therapist says he wished he had a manic pill to cure MS. I would settle for a pill that gave me the day off or even an hour off. I miss being able to dance. I’m watching this tv show about dancing and I could never move the way they do. However what I…

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