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.
Health challenges, and a move
I’m in an interesting time with my health. I’ve been having trouble speaking—making words and using my voice and having enough air for it. I’ve had multiple tests: CT scan, bloodwork and yesterday and MRI which all looks normal. This is a relief and a mystery. Today I’m meeting with a neurologist to see what next steps could be. This is new for me, and it has consumed a lot of my attention...
Gratitude 26
GRATITUDE AND AVERSION - Today I get an MRI. The first one in my life! And I feel both a rush of gratitude and aversion...
Gratitude 25
FOR POSSIBILITY - The ENT doctor with his curly grey hair and grey eyes looks at me with tenderness. His face mask is shaped like a duck bill, which makes this moment more endearing. “Do you have people that care about you in Pittsburgh?” He asks knowing I’m an immigrant. “I do.” I say.