About Jessica

I've been a gamer girl pretty much my whole life, ever since my parents bought me a original Nintendo system way back in 1986.  I played console games, computer games, table-top games, you name it.  In 2004, I was diagnosed with Crohn's Disease, an autoimmune disorder that affects the digestive tract.  I managed the disease fairly well, with only one hospitalization and few life restrictions, with the help of immunosuppressive medications.  Starting in 2008, I began to have multiple serious infections.  They would come on hard, and I had almost no immune response against them -- the infections would spread and intensify literally overnight.  In 2010, I had the worst series of infections yet, beginning with osteomyelitis in my lower jaw.  From May 2010 until February 2011, when I started this blog, I have had 3 surgeries on my jaw, a dozen rounds of oral antibiotics, a PICC line put into my arm, and 7 weeks of superpowerful IV antibiotics.  I was hospitalized in February for deep vein thrombosis (DVT) in the PICC arm and a pulmonary embolism in my right lung.

The day that I was admitted to the hospital for the DVT was possibly one of the worst days of my life.  I'd used up all my sick time at work, but wasn't eligible for FMLA yet, my medical bills were piling up, and I'd been dealing with this one infection (on top of other smaller, less serious infections) for almost a year.  I'd reached my limit for what I could deal with.  I posted as much on my Facebook page from the hospital, and a friend linked me to the Jane the Concussion Slayer video.  I knew who Jane was, having heard her mentioned by Mashable and TED Talks, and generally thought she was pretty awesome for being a female game designer.  After watching the video, I Googled SuperBetter and found her blog post that gave more details about the game's origin.  I cried, a lot, while reading that post, because Jane articulated so much of what I felt as a sufferer of chronic illness: the need for help but the reluctance to ask for it, the fear of being a burden on loved ones, the feeling of powerlessness.  Chronic illness damages us more than physically, and I had reached a point when the emotional toll was threatening to overwhelm me.  Hearing about SuperBetter, I felt hope and excitement.  I loved playing games, and here was a way to try to tackle my illnesses that used a gaming paradigm!

My situation is a little different than Jane's.  Jane had a serious injury that had potential for recovery.  I will never be cured of Crohn's, and while I have a team of doctors trying to determine what is wrong with my immune system that is making me so susceptible to infection, I may never be cured of that either.  The fact that this is a lifetime struggle for me doesn't change the heart of Jane's game though: Pain is inevitable, but suffering is optional.  I'm a firm believer that while I may always be sick, I don't have to suffer.  I'm lucky to have a great group of friends that are undertaking this journey with me, and with their help, and Jane's incredibly clever idea, I think that I can make my life SuperBetter.

Update: As of November 2011, I am still infection-free. After the DVT and pulmonary embolism in February, I was awarded early FMLA status at work, and finished another 8-week round of IV antibiotics in March. I changed surgeons, due to health insurance restrictions, and the new surgeon did a bone biopsy in early March which showed several different strains of bacteria. When the results showed continued growth of the infection, it was determined that I needed a much larger surgery than those I had had before. This surgery would entail a hospital stay and treating the infection like a cancer, where the surgeon would cut out any bone that did not appear healthy and then cut a little more, in order to get around the margins.  There was a risk that my face would be disfigured, if the infection was so deep that entire portions of my mandible would need to be removed. I underwent surgery on April 4, and experienced some complications. I'd gone through surgery before with no problems, but whether it was just a fluke or if it was because my body was so physically taxed by everything it had been through that it just couldn't take the anesthesia, I don't know, but during surgery my lungs partially collapsed and my heart went into distress. The surgeon and anesthesiologist managed to stabilize me and complete the procedure, but I spent the next three days in the progressive care unit (slightly less worse than the intensive care unit) having a million tests done on my heart and lungs. I had more blood clots all along my right arm, and had to be on an oxygen mask for a day or so, but fortunately my heart and lungs showed no lasting damage. Another PICC line was placed and I began an 8-week treatment of vancomycin, an antibiotic best suited to treating what the surgery revealed to be a persistent staph infection in my bone. (Note: Penicillin is actually the best treatment for this type of staph, but since I'm allergic to it, it was vanco for me!) I was off work the entire month of April, but returned to a partial, and then full schedule, in May. The PICC line was removed in June, and I've shown no indications of the infection reoccurring. I've lost significant bone in my jaw, but fortunately not entire pieces, so my face is still the same as it always was. I've lost 4 teeth total, so I can only eat on the left side of my mouth, but hey, it's a small price to pay for feeling like myself again. Now we're talking about the years-long road to reconstruction and carefully monitoring any changes in my x-rays, but for now, I look to be in the clear. For this round, I have become SUPERBETTER!