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28 September 2010 by stillmilestogo

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!

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

Part of the Cure

24 September 2010 by stillmilestogo

Sometimes when dealing with something as ugly as mitochondrial disease, it can be difficult to keep the focus on the good and the cure, rather than the sick and the disease. For this reason, I feel incredibly lucky and blessed to have such an amazing support network of friends and family. Even through the bad, they are able to keep a smile on my face and laughter in my belly. They are able to remind me not to focus on the disease, but rather they push me to fight for the cure, to become part of the cure.

This week is Mitochondrial Disease Awareness Week. But rather than tell you more about the disease – I think I’ve do a pretty good job for the mito-illiterate – I want to share with you all the good and amazing things I am blessed to have in my life. Because living with mito is not just about living with the disease, it’s about living.

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Posted in Boston, Canobie, Friends, Hope, Hospital life, Kiddos, Legislation, mito, Raising Awareness, Six Flags, Tutoring | 2 Comments »

Another step

19 September 2010 by stillmilestogo

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

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