I am often asked and answer honestly that no, I am not a musician, an artist, a math or puzzle geek, or a writer. Julie and I shared a love of birds and nature, a fierce passion for lefty politics and causes, a quirky sense of humor, a love of healthy, local, and delicious vegetarian cooking, complete dedication to our various animal family members, and a deep commitment to one another. I have never written a diary here and this may be the one and only. I wrote this for her and for all our friends with MG and other rare diseases. (I have a great picture of her I would love to share but I'm not familiar enough with DK to know how. I'm happy to share it with anyone who wants to add it in the comments)
Myasthenia Gravis Awareness Month, day 30
I woke up this morning knowing that I wanted to end this month by
sharing some of our story, Julie's story, with you all. I have
discovered two things - first, that I really want to write it all out,
and second, that it will take longer for me to do what I want/need to
do. For today let me share this summary
Julie started experiencing symptoms in May 2011. She was diagnosed in
late June. we were relieved it was not a brain tumor, relieved that it
was something that could be managed and that wouldn't interfere with
her life too much. It would be several months before we realized just
how wrong that assessment was.
Between 9/2011 and 4/2012 she was hospitalized 9 times and spent
around 80 days in the hospital. She had 4 surgical procedures, 3 IVIG
treatments (5 days each), 19 plasma exchanges (more in one stretch
than anyone we know), got a feeding tube to eat, could not speak
clearly for months, was placed on immune suppressant drugs,
experienced regular episodes of aspiration for 4 months, and
ultimately had heart failure. The weekend she died her heart stopped
three times and her lungs stopped working. We never saw it coming.
If that's not clear enough, no one ever told us what to watch for in
this case.
She was unable to bird, to play guitar, to exercise, eat or drink, or
go to the job she loved. We fought doctors on a regular basis. Doctors
who prescribed the wrong drugs, doctors who didn't know anything about
MG, doctors who had tunnel vision and saw only the symptoms they
expected to see but not the other problems she was having, doctors who
thought they should never be questioned by mere patients.
We spent all of our savings. I stopped working to provide the hourly
support and care she needed to be home. We spent Christmas, New Year's
Day, Valentine's Day, and Easter in the hospital.
She learned to compose music using Garage Band and released another
CD. She wrote about her experiences. She continued teaching her online
course. She took a few amazing photographs. She cheered me on every
day and helped me help her. not a day went by without her telling me
that she loved me and making sure I knew how appreciated I was. If it
was about attitude and desire she would have beaten this thing.
Julie was a brilliant, talented, creative, generous, funny, quirky,
and very loving person. I feel so lucky and honored to have shared
part of her life. MG took away her energy, her mobility, her
independence and ultimately her life, but it never took those other
things away. She loved life and wanted to live more than anyone I've
ever known. Her joy and humor still surround me every day.
