5 Ways I “Vacationized” My Last Hospital Visit

photo-79It’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

IMG_1197This 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. IMG_12061Since 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:

  1. Wore a FIFA World Cup 2014 Team Italia shirt
  2. Donned a scarf, sunglasses, and skinny jeans
  3. IMG_1195
    This artwork is actually from Indonesia, not Italy

    Took pictures with hospital artwork pretending I was at an art museum

  4. PicCollage
    Wish I could eat like this everyday

    Ate lots of my favorite foods at Eataly: pizza, pasta, and gelato

  5. IMG_12031Took 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.)

vietnam
Al & Sam, Quantum Leap

 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

Related:  Top 10  Ways to Vacationize Your Hospital Visit or Stay

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JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

2 thoughts on “5 Ways I “Vacationized” My Last Hospital Visit

  • June 21, 2015 at 2:25 pm
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    That’s brilliant! Of course, I didn’t have to pretend I was in Hawaii my last hospital stay because I really was in Hawaii! Even so, it’s no stretch of the imagination for me as not only am I being served meals in bed & catered to in nearly every possible way, there’s no shortage of people expressing their concern for my well-being by asking me how I was doing. If I could afford it, I’d be more than happy to pay for that kind of concern in my daily life.

    Reply

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