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Archive for the ‘Keith’ Category

She’s gonna blow!

Posted in Keith, reality on 5 October 2010| 2 Comments »

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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You, too…

Posted in Boston, Energy for Life, Friends, Hope, Hope Rising, Keith, Kiddos, mito, Monthly Dose of Hope, Raising Awareness, umdf on 28 September 2010| 1 Comment »

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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Another step

Posted in At the Doctor's, Boston, Friends, Hospital life, Keith, mito, Sleep on 19 September 2010| Leave a Comment »

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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