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Tag: living with multiple sclerosis

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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I pressed the med alert button

I pressed the med alert button

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I got the Covid booster on Wednesday. I felt okay until the early morning hours of Thursday. That’s when I started feeling achy. I attempted to go to the bathroom and I didn’t have the strength to get myself off the toilet. Thankfully I was able to get myself up from my wheelchair. If I knew that this would be the beginning of the horrible day I was about to have, I wouldn’t have done anything different because I couldn’t…

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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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The week ahead

The week ahead

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It was a non existent hurricane in my area yesterday. Not just non existent but after the rain in the morning we didn’t even have rain. My mom, who lives 13 minutes from me, had rain on and off all day. My friend in the town next to me also had rain all day on and off but not me. It was so strange. The sun even started coming out while my mom was experiencing pouring rain. She didn’t believe…

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Sometimes life is unfair

Sometimes life is unfair

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Happy Friday. I’m sitting here deciding what I want to write about because I know I have things I want to say, I just don’t know if I want to say it in my blog. My blog,that I’ve written the most embarrassing moments, I suddenly don’t want to put my feelings on display. Unfortunately, my blog has been my place I work my shit out for years now. I don’t think I can truly move forward until I figure it…

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Multiple sclerosis is physical and mental

Multiple sclerosis is physical and mental

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I had physical therapy again yesterday which once again ended up disappointing. I walked less than I ever walked in these sessions of PT. I woke up feeling good. I did my normal morning routine. I felt good and then I started getting tired. Therapy was at 12 and by that time I was already feeling fatigued. I was determined to walk but my body wasn’t matching my will. It was pathetic and frustrating from the first step. Why??? This…

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Rediscovering Dark Side of the Moon

Rediscovering Dark Side of the Moon

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I forgot to take my nighttime pills before bed the other night. I should have realized when I was still awake after 11 o’clock. I was tired but unable to sleep. My leg was twitching, my neck was having little spasms and I don’t want to discuss what my stomach was doing. I can say it was the attention on my stomach that made me fall to realize why I was twitching. I’ve had a bunch of nights I forgot…

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