My life feels like a giant question mark. I know all the things I can’t do, things that will trigger an ataxia episode: losing sleep, swimming, camping, hiking, amusement park rides, air travel, very strenuous work or exercise, high stress situations.
But since my seizure, I’m discovering new ways to trigger myself: a walk around the block, four hours of errands, and a good hearty laugh.
Sometimes it’s worth the risk to me. Chris and I celebrated our 20th wedding anniversary in Washington DC, but we planned to spend that first night in the hotel so I could sleep off the long flight. And there’s no way I’m going to give up laughing!
But then there are all the things I’m not going to attempt because of my question mark lifestyle. Getting another job outside my home? Way too stressful. Volunteering at church or with my kids’ sports teams and bands? They wouldn’t be able to count on me to keep my commitment. Taking a class, going on adventures, or activities with friends? Melting in public is profoundly embarrassing and humiliating.
The real issue is that I have triggers I don’t know about. Sometimes without warning (or apparent reason), I just melt.
I’ve had multiple MRIs, blood tests I didn’t know existed, and diagnostics that made me physically ill. I’ve been told I don’t have MS, Lyme disease, or anything autoimmune. But what do I have?
My EEG is scheduled for this coming Tuesday and then I go back to my neurologist in a couple weeks. My plan is to lay out all the puzzle pieces of mysterious health and ask the doctor what direction we should go.
• Should I start trying anti-depressants so I can go back on anti-seizure meds?
• Is there a specialist in Seattle or at the Mayo-clinic I should see?
• Should I apply to that new show “The Cure”? (Please no!)
I’ve been praying for the last week that God would provide clarity. I don’t know if that will be a definite diagnosis, but I will be satisfied with a basic next step. I walk so slowly anyway that more than one step wouldn’t do me any good.