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Archive for the ‘True’ Category

In the last month and a half, I have spent 40 days and 40 nights in the confines of Mass General. While I’m not yet home from this ordeal, I can confidently say that a plan is in way if they decide not to discharge me today. (The paperwork has already been started, but you never quite know…) I will be honest with all of you and say that my spirit (which I once though to be unbreakable) was starting to crack. But my dear sister Stefani would not let that happen. She and Beast devised a plan to break me out of this brig if my medical team was still holding me hostage.

Note: The captions are Stefani’s original captions.

My sidekick - waiting to rescue his princess (True)

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About 7 hours after I posted my last blog, I was finally settled in my room. By that time, my temperature had started rising. Before I fell asleep (around 8:30pm), my temperature had risen to 100.6. That’s nothing, my body told the nurses, just you wait and see! But the next vitals (around midnight), my temperature had risen to 101.8. I can’t still do better than that. My temperature at 4am was 102.4 and rising. Almost there… I hit 103.2 before it started going back down.

But my temperature wasn’t what really had them worried.

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I have a dog. Her name is True. We call her “Trooper,” “Boo boo,” “Truby,” and “True Blue”. Because she is. She’s a True-blue friend. She is a service dog and helps me with everyday tasks.

Yesterday was True’s 6th birthday. That makes her middle-aged in dog years. We are so blessed to have True in our lives so we celebrate doggie birthdays just like we do human birthdays.

For this birthday, I made cupcakes on Saturday night. They were dairy-free, egg-free, chocolate-free, and baked with agave nectar in place of processed sugar (because processed sugar is bad for doggie tummies). And because of this, they were doggie-edible.

We got up early Sunday morning to run errands (something True loves). First on our list was Petsmart. Petsmart is one of the few places we go that we let True be “just a dog.” We leave her service dog jacket in the car and take off her gentle leader. She’s allowed to sniff and greet other dogs and get pets and cookies from people she meets. She loves it. We picked up some new nail clippers for her (our old ones got lost in the move) and some specialty frosted cookies and bones for her birthday. She was in heaven.

Next, we were off to Costco. [For my pharmaceutical-dependent friends out there, Costco Pharmacy ROCKS. They charge at-cost so if your insurance doesn’t completely cover something (for me, Zofran), it’s not that expensive!] Costco was a short trip aimed at picking up a few staples in our home.

Then we were off to Beast’s house. Beast is True’s boyfriend. He’s a 10-month-old, yellow lab service dog. They are best friends:

Beast and True, ready for work


They are hilarious together. They chew on opposite sides of the same bone, swim together, cuddle, and work together. Beast even brings True toys and forces them in her mouth. They are certainly good pals. So was there any better way to celebrate her birthday than by letting her celebrate with her favorite four-legged pal?

After letting True and Beast enjoy the evening together, we headed home so that True could enjoy her allergen-free, puppy-safe cupcakes.

Thank you, True, for being there for me when I need you! Here’s to many more happy birthdays in the future!

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Today, I had my pre-op consult with the surgical team for my muscle biopsy. It seems like such an ordeal for such a small operation. I found out that the procedure is only done with general anesthesia so even after begging for local it was a no-go. But we were able to set a date for the soonest available day: September 16th. We’re looking forward to getting some more firm answers at this point. Wish us luck!

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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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