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Tag: living with MS

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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MS Bike Fundraiser

MS Bike Fundraiser

Every year I put this on my blog. Every year he does this amazing fundraising event in my name. This is a MS fundraiser that I wouldn’t be able to participate in based on the level of my disability. I haven’t been able to ride a bike in many years. That is what is amazing about these fundraisers, most of the time the people participating don’t have MS. I thank everyone who donates. However, I truly thank the people out…

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Pincushion Arms and Infusion on Horizon

Pincushion Arms and Infusion on Horizon

I’m sneezing. My first cold of the year. I have been taking my oregano oil for a few days. It has probably helped but it hasn’t stopped the cold like it has in the past. I think things are just not affecting me the same since my whole pneumonia debacle. Oregano oil use to knock out anything as soon as I felt the twinge. Now I feel like it doesn’t do the trick. I’m not use to actually feeling run…

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Gastrocolic Reflux

Gastrocolic Reflux

I’m waiting out a F1 rain delay so I decided to write. Rain always makes a race so much more interesting. My favorite driver, Fernando Alonso, a veteran and oldest F1 racer loves the rain. He knows how to drive a F1 car in those weather conditions. He isn’t scared taking the corners at a high speed as some of the newer drivers still are tentative. Plus this is a night race in a street circuit. That means close walls….

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