Wow, October feels like it was just yesterday. But it also felt like it took 45 years to end. What even is time?
My book signing was on Oct. 2. I thought I should probably update you now that it’s November. Holy heck, it’s been a whole month!
The signing was great, and I had a really good time. I’m glad that I was finally able to have the experience. It made for a fun but exhausting day.
I finally had my MRI with contrast. They couldn’t get the IV in me the first time, so I had to try it twice. Not a surprise, really. They scheduled me again with a request for an intravenous ultrasound.
As it turned out, they didn’t need the ultrasound. It bummed me out because I wanted to see it in action. I’ve never had an intravenous ultrasound before, and I don’t know why. They should have been doing it a long time ago. It’s odd that they need a special request for something that I find almost necessary.
A fellow columnist, Brianna Albers, has talked extensively about this topic. She hits the nail on the head every time.
Nurses often don’t listen to us. They say they’ve done this before and that they’re very good at it, which is funny to hear the first few times. But after 22 years, I know my body probably better than a nurse who just met me.
I love it when nurses listen to me and go for the vein that I know works well. Oftentimes, they look at me, shake their heads, and go for a vein that has never worked before. That part is frustrating. It makes me feel like my body doesn’t belong to me. Like my feelings don’t matter. I know they’re trying to help, but ultimately, five to six pokes later, they’re not.
This month, I’m going to attempt National Novel Writing Month. NaNoWriMo is a challenge to write 50,000 words in November — nearly an entire book.
I’ve been participating in the challenge for at least four years, but I’ve never reached 50,000 words. And I won’t this time, either. But I will try to finish editing my novel this month. I doubt that will happen, but I get more done when I set a deadline instead of letting myself do whatever I want.
Trying to complete the challenge while physically disabled can be an issue. I used to write everything by hand. Now, for most things, I use speech-to-text. It’s considerably faster, so I want to see how quickly I can do things.
For the most part, it won’t be too bad, because I seem to be on the mend.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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