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Archive for the ‘Keith’ Category

Autumn Cleaning

First, I want to thank everyone for the outpouring of love and support we’ve received since my last post. Yes, I know it’s okay to “lose it” every once in a while, but it doesn’t mean I don’t get embarrassed of myself when I do.

Since then, we have made a significant dent in our “to do” list. It makes me feel quite accomplished to take a pen and scratch off yet another burden on my shoulders. The project has officially been deemed our “Autumn Cleaning.” I don’t know where I’d be without Keith. He really steps up when I need him. Also, a big “thank you” to Bill (“Beepa”) and Ralph for helping us out on our bookshelf repair. We’re really lucky to have you all in our lives.

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She’s gonna blow!

Today, I lost it. I’m not proud to admit it. In fact, I’m embarrassed. But I strive to be open and honest, so here’s the truth: I completely lost it and blew up at my amazingly wonderful husband.

Some background: Three months ago, Keith and I packed up our amazing 1-bedroom apartment that overlooked Fenway and set off for our newest adventure, which happened to be moving to a quaint New England town in Northern Massachusetts. We have been very lucky here, living incredibly close to some friends who closer to family than friends. Unfortunately, I degenerated severely at the end of June through the end of July. I had an increase in seizures, dystonia, and sleep requirements and a decrease in muscle tone, weight, and mobility. Luckily, I have managed to rebound and am only slightly below my previous baseline. Also fortunately, our “family” – including my biological family (my mom!) – was there to help us through everything from the medical to the move and unpacking. We are incredibly blessed to have such an amazing family – biological and acquired.

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Last weekend, I helped put on a patient education meeting for the mito community. The meeting was incredibly productive and I am so incredibly grateful and blessed to have had some amazing friends to help us put it together. In preparation for the meeting, I put together a montage video with a song on my good friend Stefani Bush’s upcoming album, Hope Rising. Hope Rising will be released in November. If you’d like to order a copy, let me know!

The majority of the pictures were given to me over a the last few months to support the efforts of UMDF; others were taken at UMDF-sponsored events. I’m very grateful to all of those who shared with us. We hope the video inspires people to not live only to become victims of the disease. Rather, we hope you’ll join us in our efforts and on our journey. Because you, too, can be part of the cure. For more, please visit umdf.org.

PS I forgot to add one of my pictures on my last blog. Take a look!

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On Thursday, I was able to take one more step on this crazy mito journey: I finally got my muscle biopsy. We are so grateful that we have this out of the way now (since it’s one of the more invasive steps), but we will, unfortunately, be playing the waiting game now as the results frequently take months to come back.

Keith and I woke up at 5am on Thursday and picked up my dear friend, Stefani, to head in to Boston. I was so grateful that Stef said that she wanted to come for moral support. She and her husband, Ralph – and her parents! – are there for us every step of the way even though Stef and her two kids have mito as well. We left her home around 5:45 and were off! Even though we got there early, we barely had to wait before they took the three of us in for pre-op. I was happy that there were people there to entertain me as pre-op was a long and boring process.

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Tomorrow, Keith takes me in to Boston ultra-early for my surgery. My dear friend Stefani will be joining us to provide moral support and advocate for us should something happen. I must emphasize that nothing should happen. This is a routine procedure being performed in one of the world’s best hospitals (MGH). However, they are requiring me to undergo general anesthesia. I don’t always handle general anesthesia well. In fact, I don’t handle general well. The most recent time, for instance, I stopped breathing for a short time following anesthesia. And recovery is long and arduous.

But, apparently, there’s no way around it. We requested numerous times to perform the surgery under local anesthesia, but the surgeon insisted that it had to be done under general. We’re not sure if this is because I’m labeled a “high risk” case and they decided to perform the surgery in the Same-Day Surgery OR rather in the outpatient clinic like it usually is.

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First, my apologies for the huge gap between updates. Last week was, well, “one of those weeks.” Between work, sleep, and the multitude of birthdays, I nearly forgot to breathe and did forget to regulate my temperature.

Let’s start out with the birthdays! I want to wish a HUGE happy birthday to my friends and family:
My Daddy (August 15)
Cousin Lindsay (August 16)
Former Roomie Dorothy (August 16)
My Mama (August 18)
My “niece” Sasha (August 20)
My Uncle Mark (August 20)
My Gammy (August 21)
My other “niece” Alexis (August 21)

You guys make my world and I’m so blessed that you’ve been in my life for another year. I wish I could have been closer to all of you to help you celebrate your special days. Unfortunately, the birthday honorees live in five different states from Massachusetts to Texas to California so it was, alas, impossible. I do hope you all celebrated in the style worthy of your awesomeness.

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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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