It’s taken me a while to post an update on Tuesdsay’s neurological visit but I finally have my “vacation pictures” together. As many of you know, I “vacationize” my hospital visits and stays. I haven’t been on a vacation since 2008—the year I got Myasthenia Gravis. Elvis is great but if I knew I would be sick, I would have asked if we could go somewhere else besides Graceland. Like many sick people, I spend more time at the hospital than I would like. So I believe in taking the vacation to the hospital. A few weeks ago, I visited my friend Cynthia at Cancer Treatment Centers of America, and we turned it into a Hawaiian vacation. Since I had just been to Maui, I wanted to go somewhere else this week.
The Goal: 4 Mg of Prednisone
This Tuesday was my first time taking my quarterly neurological exams (which test strength, stamina, and flexibility) since I started physical therapy in April. I’ve been taking these tests for five years. When I do poorly on the exam, my neurologist, “Dr. S,” doubles my Prednisone. If I do well, I get to go down by 1 mg. This is why I’ve never reached zero. (Prednisone is steroids used by millions of women with cancer, autoimmune diseases, and other conditions.) This year, I’ve been on 5 mg of Prednisone—the lowest I’ve ever reached. On Tuesday, I was actually excited to take the test because of my progress in physical therapy. While I was hoping for the best, I was also preparing for the worst. As someone with five illnesses, I’ve received plenty of bad news in the hospital. I always do something fun after each visit regardless of the test results. Since my post-visit destination was Eataly (I love Italian food), I decided to make this neurological visit an Italian vacation.
5 Ways I Vacationized My Neuro Visit:
- Wore a FIFA World Cup 2014 Team Italia shirt
- Donned a scarf, sunglasses, and skinny jeans
Took pictures with hospital artwork pretending I was at an art museum
Ate lots of my favorite foods at Eataly: pizza, pasta, and gelato
- Took pictures with fresh produce at Eataly
My Test Results
So my goal this week was to reach 4 mg of Prednisone because my fingers and toes hurt. A lot. The combination of Pyridostigmine (another fun Myasthenia drug) and Prednisone causes crampings and fasciculation in the hands and feet. I would like my fingers and toes to stop hurting for the first time in six years. Dr. S made the test harder this time. But even then, I could sense that I was doing well. It’s really hard to describe the physical exam but let’s just say they test my reflexes, make me tired (“do this ten times while holding your breath and counting to 30”), and then test my reflexes again. Tuesday was my best performance ever. Afterwards, my neuro said if I performed that well again at the next visit (in January), I could go down to 4 mg. Dr. S said 2015 might be the year I reach zero mg of Prednisone! There were two reasons she said I couldn’t go down to 4 mg now: First, she is going on vacation. She didn’t want me to relapse while she was out of the country. I’m blessed to have such a thoughtful physician. Second, my white blood cell count is low. (Anybody have any suggestions for that? My next blood test is in September.)
Freedom as a State of Mind
Even though I didn’t reach 4 mg this week, I’m very happy. I’m happy because after years of erratic test results, I feel like I’m headed in the right direction. And I’m happy because I realize that (sometimes) freedom is a state of mind. Myasthenia has hurt my lungs, fingers, toes, back, neck, and shoulders but it hasn’t taken my heart. I’m reminded of a scene from Quantum Leap (episode, “The Leap Home: Part 2”) where Sam realizes he made a mistake and he could have freed his best friend, Al, who was a P.O.W. for five years in Vietnam.
Sam says regretfully, “You could have been free.”
Al responds, “I was free. Up here, I was always free.”
–Your Stylist, Jessica Gimeno
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