Gratitude 33
GRATITUDE FOR NEW "WHAT IF" QUESTIONS - I sit with too many sad questions. “What if I didn’t get ill? What if money was abundant? What if I lose my ability to hold a pen and crosshatch?” I look at my life for evidence of abundance and new “what if” questions. Here is my starting list...
Closer to diagnosis
Hanna visited a neuromuscular specialist today. Next steps: a round of blood tests that look for many different kinds of indicators, intended to support or eliminate possible diagnoses. And an EMG test—electromyography—which will happen next Friday. After that, the doctor expects to be able to make a diagnosis.
Gratitude 32
GRATITUDE DESPITE DISHEVELMENT - When I woke up on the first of January I felt feral, like I too wanted to jump the fence. On the second of January I felt stranded by my lack of energy. On the third of January I felt worried about making a living with this life.
Gratitude 31
PRACTICE BEING IN UNCERTAINTY - I don’t like this grasping feeling I have and yet here it is. I really, really, really want to know. We underscore the importance of developing a capacity to dwell in uncertainty, but in this moment my body bristles with frustration only a test result will soothe.
Gratitude 30
FOR TENDERNESS - The door to the scan room is wide and the steel door jamb looks like it belonged to a bank safe. The yellow “Caution Radiation” sign has me feel a bit uneasy. When the door swings open, a platinum blonde woman waves me in....
Gratitude 29
FOR CARE I CANNOT GIVE MYSELF - It has been more than a week and I still do not have an appointment for the swallow and breathing study. “Why?” asks a friend. “Just pick up the phone and make the appointment.” I shake my head. “I wish it was that easy....
Gratitude 28
FOR CHOOSING BACK - There is a strange logic that seeks something to blame, as if fighting that is a better use of energy than sitting with the unsettling knowledge that my world, our world, is changed. I don’t want this change, I don’t want this thing I have no name for yet.
Next steps toward diagnosis
Continuing to chase a good diagnosis. The following tests are happening between now and the first week of January: CAT scan, blood tests for this and that indicator of this or that condition, an appointment with a neuromuscular specialist for a swallow and lung study.
Closer to diagnosis
I had a good meeting with the neurologist yesterday and they suspect I have Myasthenia Gravis, a chronic autoimmune neuromuscular disorder. I am helped by knowing there is a possible diagnoses. Next steps are a slew of tests, scans and muscle studies to confirm and gain more insight...
Gratitude 27
FOR WHAT WE DON'T HAVE - We went to lake Erie on Sunday and swam for hours. But we weren’t alone in the waters. There were sneaky parasites looking to make their home in ducks. But because we are hot bodied too, they mistook us and burrowed into our skins.