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Tag: ms fatigue

Hello

Hello

I’m still here. I have kept the blog. I know it’s been a long time since I have written anything but I have to admit I haven’t had much to say. My life is very quiet now. I choose it to be that way. I find it easier. I still workout in the mornings but I now do it only 5 days a week. I’m still obsessed with Bionic Gym. However, I spend the majority of my day in my…

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A Jamie update

A Jamie update

I have so much to catch you up on, I’m not really sure where to start. I seem to have the UTI’s under control. I’ve made it two months without needing antibiotics. I am talking a prophylactic antibiotic nightly as a precaution. Hopefully I am through the cycle I was living inside. I was also given a round of IVIG therapy to boost my immune system. That is an IV of immunoglobulin. By boosting my immune system we are once…

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Stopping Disease Modifying Therapy Drug

Stopping Disease Modifying Therapy Drug

I had a conversation this morning with my neurologist. This was my specialist in NYC however I did have the conversation with my other neurologist last month. It is on a topic we have been questioning with every UTI I’ve dealt with since April. Is it worth continuing suppressing my immune system anymore? I have certainly not been stable on Rituxan. Part was due to the pneumonia, can’t blame Rituxan on that decline. However, over the last year, I have…

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Wheelchair Isn’t Only For Transportation

Wheelchair Isn’t Only For Transportation

So I have to say I’ve never been so happy to have my chair. Who knew that I would have missed my chair so much. I am not one who usually spreads love to Kit, my main wheelchair. I probably spend more time cursing at some misfunction or slow maneuver. However, I never realized how much this chair did for me until I didn’t have it for 2+ months. I don’t think I’ll be cursing my chair anytime soon. Sitting…

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Physical Therapy Begins Again

Physical Therapy Begins Again

Hello my fellow bloggers and readers. Happy Friday. I am chilling with Zoey watching a F1 2008 race. I’ve been watching old season since the F1 season ended in 2022. I watched every race in the two seasons that Fernando Alonso won his championship titles. Fernando Alfonso is my favorite driver. I’ve seen many of his earlier races at various times. However, to watch a season,one race at a time, you really see how the title was won. I have…

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Multiple Sclerosis Sucks

Multiple Sclerosis Sucks

Hello to all. How are you feeling? Don’t we always hate that question? Multiple Sclerosis is a shitty disease. Have I said that recently? I remember I used to ask my neurologist every time I had an appointment, are you sure I have MS?” He always replied, “it wouldn’t be an appointment with you without you asking that question.” Unfortunately, the answer was always the same. Eventually I did stop asking him that question. I don’t know if it was…

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Bionic Gym Comparison

Bionic Gym Comparison

Hi everyone, happy hump day. I’ve been wanting to do this comparison of workouts for so long. I did my typical workout. https://youtu.be/qbFvZEPTXDk. This is from Adapt to Perform. He has so many great workouts on his channel. Each workout is for wheelchair users being he is also confined to a wheelchair. The one I posted above is my go to workout routine 2-3 times a week. I repeat this three times when I do it for a total of…

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Multiple Sclerosis is not an Easy Disease

Multiple Sclerosis is not an Easy Disease

Happy Friday. I feel like this week went super fast. I didn’t do much. I fell again this week. This marks the fourth fall in 3 weeks. I am having trouble with transferring from my bed to my wheelchair or wheelchair to my bed. Most other the falls have happened with aides that were new to me. They either didn’t have good enough English to understand what I was saying or they really couldn’t do what I needed. However, the…

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A Monday morning Rant

A Monday morning Rant

I’m sad, my daughter went back home to Maine today. I had a really nice visit with her this past week. She might have needed to come home for mom time but I definitely needed daughter time. I am just such a proud mom watching her start her life. She is in a new state, has made some really good friends and has become so much stronger standing on her own. I can’t even begin to say how amazed I…

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Rituxan Infusion in the Books

Rituxan Infusion in the Books

I am half way through my Rituxan infusion. Chilling out watching Ink Master. I was smart this morning. I kept my arms covered despite being slightly warm. I know, all too well, that my cold arms do not help when trying to start an IV. I overheat so easily so there is usually a fan blowing right next to me. I might not feel cold but my arms and hands are always cold to touch. I kept a sweatshirt on…

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