Posted in At the Doctor's, Boston, Hospital life, mito, Raising Awareness, The Future on 3 November 2010| 1 Comment »
Goodness! I seem to have neglected to update recently. My apologies for the delays. I’ve got some great Autumn goodies to share but I want to get the “ugly” stuff out of the way first. So stay tuned for the fun stuff.
On the 29th, I went in for my Antro-duodenal Motility Study. That’s the ugly and technical words for “test to see how well the muscles in my stomach and the entry to my small intestine work.”
Posted in Boston, Canobie, Friends, Hope, Hospital life, Kiddos, Legislation, mito, Raising Awareness, Six Flags, Tutoring on 24 September 2010| 2 Comments »
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.
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.
The woods are lovely, dark, and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
-Robert Frost
Still Miles to Go 