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Tag: ms life

Nursing aide hours

Nursing aide hours

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I had my lovely sister over this weekend. We were discussing the possible change in my nursing aide hours. This is all coming from the incident when I fell and couldn’t get up. https://multipleexperiences.org/2021/08/27/i-pressed-the-med-alert-button/. After this unfortunate issue, my mom and step dad decided I needed more hours of care. I actually had an evaluation with my insurance a few days later by lucky coincidence. We made a request to change my nursing aide hours from 8 hours Monday-Friday to…

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Bike MS 2021

Bike MS 2021

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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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Bike for MS

Bike for MS

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Once again my brother is training for his 50 mile bike ride for multiple sclerosis. Each year he does this fundraiser in my name. Raising money riding a bike, something I’ve been unable to do for at least 8 years. Please help us find a cure for all of those who suffer daily but are still warriors. https://www.facebook.com/donate/157731676220745/?fundraiser_source=external_url Why We Want to Create a World Free of MS It’s now 13 years ago when I said I wanted to ride…

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Weekend plans, or not

Weekend plans, or not

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When your day starts off with an accident and a fall, you aren’t feeling so optimistic for a good MS day. Yesterday evening was my second Kesimpta shot. I decided to once again do my thigh region. I did my right leg this time. That might not have been the best place. As soon as the needle pierced the skin, my leg immediately went into a super spasm. I twitched and moved during the injection. It hurt. I know that…

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Bionic Gym highly recommended

Bionic Gym highly recommended

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After all my worries over changing to Kesimpta, I’m now pretty darn happy I did. I felt fine after the shot on Thursday and all through the weekend. To not have to do a six hour infusion followed by 3 plus weeks of feeling lousy, I have to say I’m pretty excited. No more steroids. No more IV vein issues. No more aggravation with the former pharmacy over the correct infusion supplies. I must say that is a win, win,…

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First Kesimpta dosing shot

First Kesimpta dosing shot

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I started getting freaked out reading other people’s first shot reactions on the Facebook Kesimpta group. I thank Sherry for commenting on my Kesimpta delivery blog and telling me about the group but it didn’t help my nerves. Thankfully, I had a video conference with my neurologist yesterday. She explained Kesimpta is nothing like the interferon shots that I took for the first 12 years. The shots that still give me those horrible flashbacks that are causing all this fear….

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Kesimpta delivery scheduled

Kesimpta delivery scheduled

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I got a call yesterday from the pharmacy about the delivery of my new medication, Kesimpta. I am being mailed 3 doses for my first month. I take a shot weeks 1,2 and 4. From there it will be once a month. The shot is recommended to be in my thigh, stomach or upper arm. All the memories of the years of Betaseron come flooding back. Betaseron was my main MS drug until Gilenya, a pill, came out. 12 years…

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My very early birthday list

My very early birthday list

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Good morning to all. It’s September 1st and I’m doing my happy dance. I made it through another summer. I want to be the kind of person that has a summer place where it is cooler like in Alaska or Iceland. Someplace I can retreat to during the hit and humid months in New York. I don’t think that’s an unreasonable accommodation. Im not a beach person although I love to gaze out over the water. I just love views….

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Stress and Multiple Sclerosis

Stress and Multiple Sclerosis

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I’ve been trying to focus on other things going on with my body besides just a number on a scale. I purchased a HEALBE watch. I wear that on one wrist and still wear my Apple Watch on the other. It is a little odd but the HEALBE gives me insight into different things. I can talk about every line of this watch, because I’ve learned a lot about how my body is truly functioning throughout the day, but it’s…

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Out of my routine

Out of my routine

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I’m anxious today. I’ve had too many days already out of my normal routine and today is no different. I have to get the covid booster at 12 and game day in the building is at 1. I just finished exercising and getting dressed but I feel rushed. It didn’t help that I smacked my head on these ridiculous metal bars that are right behind my head on my wheelchair. All I need to do is not lean back straight…

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