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Tag: living with multiple sclerosis

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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New Year Intentions

New Year Intentions

Christmas is in two days. Another year has come and gone. I spent last New Years Eve in the hospital. I never could have imagined that 2022 would be such a difficult year for me. It was 22 my number. I thought great things were going to happen. https://multipleexperiences.org/2021/12/27/my-angel-number-22-and-the-new-year/ I wrote that post 3 days before I got sick. I was so excited that it was 2022. My head was stuck on the fact that 22 was my angel number…

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Steroid Withdrawal

Steroid Withdrawal

We decided to do a round of steroids. I discussed this with both my neurologists. Throughout my years with MS, I would average steroid infusion treatments two times every year. That is why I was on so many disease modifying therapy drugs for multiple sclerosis, I always had relapses despite taking these medications. I hated steroid infusion. I hated the side effects. I hated the withdrawal. I refused to taper after the first few years dealing with steroids. Going from…

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Meet me on Facebook Saturday

Meet me on Facebook Saturday

I’m so excited to be able to share this with everyone. I am doing a live session about Bionic Gym. I am doing this with the founder and creator of Bionic Gym, Dr. Louis Crowe. I have been very lucky to have had the opportunity to personally talk to Dr Crowe on a few occasions. He responded to me after I made a video for Bionic Gym customer support. I have loved Bionic Gym from the day I received it,…

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Neurologist visits

Neurologist visits

I have to say this cold has kicked the shit out of me. I know taking Rituxan lowers my immune system but I honestly very rarely get sick. Even my issues in 2022 I was on Kesimpta, not Rituxan. The last cold I had was back in 2019 when I went on my last vacation. I went to Mexico with my family. I had the worst cold. I was miserable for the first 4 days of the week’s vacation. I…

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My age 51 my body is much older

My age 51 my body is much older

It’s my birthday tomorrow. 51!!! I’m middle age. I think my body has been middle age since I was 43. That was when multiple sclerosis hit me with the last relapse that started my path of true disability. It’s been 8 years since that last relapse. It was when I was switching from Tysabri to Rituxan. I made the mistake of stopping Tysabri because I actually had the thought of switching to an experimental drug. I needed to be off…

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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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