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  • Kevin’s Weekly Recap 9/3/18-9/9/18

    Posted by kevin-schaefer on September 10, 2018 at 12:18 pm

    Normally I talk about how energized I am and how ready I am to take on another week, but I have to say I found myself pretty worn out last night. This past week consisted of a Spinraza injection, speaking at an MDA (Muscular Dystrophy Association) fundraiser, making a video log series for a Spinraza study and my usual workload. I almost forgot I had last Monday off for Labor Day!

    Last Monday I did take it easy. I mostly read comics and watched Netflix, and did some writing. I just finished a graphic novel script I’d been working on for a while about a week and a half ago, but I’m outlining another story now. It was a pretty relaxing day, though I did give my caregiver off for Labor Day. Whenever he’s on vacation, my Dad gets me up and ready in the morning and to bed at night. It does take my Dad a little longer to do my morning routine than it does for my caregiver, so I plan accordingly.

    Tuesday and Wednesday I had a lot to do knowing that I would be off for my Spinraza injection on Thursday. I worked pretty non-stop both days writing forum posts, doing conference calls, recording podcasts and editing and uploading my column. I did get out to the comic shop on Wednesday night after work, which was a good way for me to relax before injection day. Like I mentioned in my post about the injection, I’ve been pretty chill about injections now that I’ve gone through the process multiple times. Still, it helps me to do something fun the day before and go into injection day nice and relaxed.

    I also spent last week making a video log series about my injections and my overall journey with Spinraza. A marketing company reached out to me about this a few weeks ago, and I agreed to it. It was a paid gig, and all I had to do was record five short videos over the course of five days.

    As I wrote about in another post, my injection on Thursday went smooth. I can’t say I go in excited to have a needle jammed into my neck, but I’ve gotten used to it after six successful injections haha. It was over before I knew it, and I got Burger King on the way home and took it easy the rest of the day. Anyone here a “Sons of Anarchy” fan? I watched the series premiere of the new spinoff show “Mayans MC” that afternoon. I then took a three-hour nap, which did mess up my sleep schedule. I wasn’t tired that night, so I just got in bed and watched Netflix on my iPad for a while.

    I felt fine on Friday, got back to work and went out with a friend that night. I did experience some fatigue that afternoon, but I attribute that more to the heat and humidity here in North Carolina more than anything.

    Saturday morning I woke up early for the MDA fundraiser. Saturday is usually my sleep-in day, so I wasn’t too thrilled about getting up before 8:00. Still, the fundraiser went well, and I spoke at the beginning about my story and about what I do now with Bionews Services. I think there were people encouraged to see that someone born with a neuromuscular condition was still working full-time and living an active life. Afterwards I got lunch with my parents, and then took it easy the rest of the day.

    I still went out with family on Sunday, but by that night I was exhausted. I’m going to try to pace myself more, as I’m one of those go-go people who sometimes bites off more than I can chew. I believe it’s important for those of us with disabilities and neuromuscular conditions to continue to live our lives to the fullest, but also to take breaks as needed.

    What did you all do this week?

    kevin-schaefer replied 5 years, 9 months ago 1 Member · 0 Replies
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