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The last few days since my last post have been action-packed! Today, Keith and I went into Boston for my gastric emptying study, which is a precursor to the Antro-duodenal Motility test I’ll be having at the end of October. We confirmed what we already knew from endoscopy: my gastric emptying sucks. I arrived at 11am for the study, having fasted for about 10 hours. I was exhausted and just wanted to sleep – but more on the reason why below. I was sat down with 2 eggs scrambled with some yummy radioactivity goodness, a glass of water, and some toast. I warned the administrator I wasn’t very good with solid foods and then began choking them down. I asked if I could take some zofran after nearly losing the eggs on the floor, but was told “no.” I finished the eggs – barely – with 2 sips of water and no toast. I think the test ruined scrambled eggs for me permanently because I will forever associate them with a metallic taste.

I was then told that for the first hour I had to remain still on my back while a scanner took pictures every minute. If my stomach had cleared 50% of the food after 60 minutes, I could leave. I was told that 60 minutes is the average for a “normal” person. We laughed. He continued to say that after that I could sit up but we’d have to take more pictures every 30 minutes until I reached 50%. We were there 3 hours – usually, the test ends by 2 – and I still hadn’t reached 50%. Because the reading was exactly the same for the last 90 minutes, he said I could go as he didn’t see much happening soon after I kept steady at 44% emptied. I immediately took a zofran and drank some water as I couldn’t have anything for the last 3 hours. And that’s how I finished the 2nd of my 5 medical appointments this month.

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I was recently told that people were worried about me. After initial confusion – followed by slight flattery – I realized why: I suck at communication. People only hear when things are bad (because Keith calls) and I fail to communicate that – most days – I’m doing just fine. So here we are. Because I’m not likely going to get any better at communicating regularly (just being honest!) and I do really want to keep everyone informed, I started a new blog. I’m hoping that through this page, I can keep you – my family and friends – updated on our life – the good and the bad. I want you all to realize that most of our life is pretty normal; we work, play, and enjoy life. We might, however, do it a little differently. Also, I’m hoping that, through writing, I can bring some awareness to mitochondrial disease and some of the other issues we face. Please feel free to pass on my writings as part of my goal in this blog is to open a window into living life with a mitochondrial disease – and a smile!

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