Tomorrow afternoon, I see my neurologist and I take my physical exam (for myasthenia gravis). Depending on the results, she will adjust my dose of Prednisone (steroids), or what Fashionably ill reader, Shahona calls “The Devil’s Tic Tacs.” In September, she increased my dose from 4 to 10 mg, which sucked but was absolutely necessary. September and the beginning of October were colorful; it all started with some bad blood tests. A week later, I was experiencing a flare-up of MG symptoms with my eyes (ptosis or drooping eyelids), legs (loss of balance), and lungs (difficulty breathing). Thankfully, my breathing and eyelids returned back to normal after a few days on the higher dose. As for my legs, I resumed physical therapy last week, which I successfully completed last December.
The Uncertainty of Tests
I hate these visits because of the uncertainty. I’d much rather take one of my final exams from college than another MG test. I hate waiting for test results whether they’re blood tests or pulmonary tests. In the case of the physical exam for MG, I know the results right away. Sometimes, I get the results I want like in January when the doctor decreased my Prednisone from 5 to 4 mg. Sometimes, I don’t get my way. But I always have something fun planned for after the visit. (And sometimes, I “vacationize” my hospital appointments by wearing a lei, putting a flower in my hair, putting an umbrella in my drink, and acting like a tourist taking pictures in the hospital.) It’s totally okay to cry, vent, and scream about bad test results. But there’s nothing wrong with pizza, gelato, or whatever your guilty pleasure is. Pizza (with extra mushrooms) won’t change my test results but it will make me feel better momentarily. So I’ll “celebrate” for lack of a better word regardless of what happens tomorrow. Saturday night, there’s a big fight, Miguel Cotto vs. Canelo Alvarez. And I’ll be watching at home in bed. That’s going to be my treat for this week’s hospital visit.
Why We Laugh Through Our Pain
When I was in college, after final exams, some of my classmates would stay at home refreshing their computer screens waiting for the professor to post grades. My response was to go to the movies–I’d drop everything after exams and just go! And eat pizza, ice cream, and a Slurpee. (Remember: I was young, not on a truckload of meds, and had a good metabolism.) Several years ago, my maternal aunt got stage 3 colon cancer at the same time that I got myasthenia gravis. It was a very tense few years for our large, close-knit family. After a year of chemo, she was in remission and we had a party to celebrate both her 61st birthday and the remission. Then, a few weeks later, she was diagnosed with breast cancer. I’ll never forget that day we found out–I answered the phone. My uncle’s voice was shaky when he asked to speak to my mom. So I knew it was bad news. That night, seventeen of my relatives gathered at our favorite Thai restaurant. (I, of course, was coming late from a doctor’s appointment.) We cried, prayed, and laughed together. That last one always stuns people–how could we possibly laugh at a time like that? We laughed partly because the whole thing was so absurd–how could all of this happen to one person? Two different cancers in two years (this was not a case of the colon cancer spreading). Previous to that, my aunt had also survived triple bypass surgery years ago. And how could all this happen to one family? I have five illnesses and myasthenia gravis is a pretty rare illness–the odds of having the first three of my diseases are in 1 in 50,000,ooo. How could we laugh? Part of it was our faith, part of it was that we had each other, and part of it is our culture. The Filipino people have survived a hundred earthquakes and typhoons and the brutal dictatorship of the Marcos Regime. Through it all, we have found a way to laugh. And eat. A lot.
How Do You Cope?
I don’t know what tomorrow afternoon holds. I hope to go down on Prednisone–I hate the increased cramping in my hands and feet. It’s painful. Plus, I like it when my clothes fit me. But either way, it’s pizza tomorrow night and boxing this weekend. Of course, everyone is different and there is no one way to cope. How do you deal with the waiting game and test results?
–Your Stylist, Jessica Gimeno