Prednisone high prompts my first blog :)

Nothing like waking up at 5ish with tons of thoughts running through your head thanks to the prednisone steriod boost.  Now I know why Grandma kept writing all those emails at 3am last fall. Last year about this time she was on high doses of steriods to reduce her brain swelling and keep her "functional" as long as possible.

Grandma was diagnosed with a brain tumor in July 2009. She chose not to fight it. My uncle Jim died of the same type of tumor a few years earlier. Grandma selflessly took care of him for the last year or so of his life. She never hesitated to move temporarily to Atlanta to do so. I'm sure seeing him struggle against his terminal tumor made her decision much easier. I also know she had also been ready to join Grandpa for a long time.

Grandma's death had a huge impact on me. Sure it's been hard losing my last grandparent. But it goes a bit deeper than that. We lived with her & Grandpa for four years after my father died (when I was 4). She and Grandpa were like second parents to me. Not to slight my mom is and always will be the greatest mom and friend a person can have!

Grandma's death also made me come to terms with many aspects of my own health/life & death perspective. See I constantly go through ebbs & flows of thinking "I'm superwoman and can do anything regardless of having Cystic Fibrosis and being 3 years past the average survival rate. I can run circles around the rest of you normal people." and "Oh no I've got 20 gazillion things on my plate and now I'm sick and this sucks because I now I have to take off my superwoman cape for a bit and admit I'm sick to the rest of you normal people and hope that you can comprehend what it means for me to be sick." To my own detriment when I'm sick it's usually a bit more than just a case of the sniffles. I often worry about people who don't understand my disease fully and might think that I'm slacking somehow. Clearly I look normal so could I really be that sick so often? So to counterbalance this perception I often try to keep up with the normal peeps until my health gets in crisis mode.

Since January 2008 crisis mode has been happening more often than I might like. I've had four hospitalizations, two surgeries, and been on IV antibiotics four times. My FEV1 is down to 0.89L and FVC is 1.71L. Compared so someone my age/size my FEV1 and FVC are 26% and 41% of normal. FEV1 and FVC are basically measures of lung capacity. Clearly with these stats I am physically not superwoman. Although she does have a smoking hot outfit that my bony ass would probably look decent in with some padding in the upper chest.

Back to Grandma. So her death prompted me to take a long hard look at my own life. No matter how hard I tried to keep up with work my health kept failing. Even on a reduced schedule of 29 hours a week I never had the energy to keep doing quality work and take care of my health. Although 29 hours does not seem like a significant reduction, as a tax manager in public accounting 60-70 hour weeks happen often during our busy season. Even off season sometimes you're lucky to work only 40. After a hospitalization in March it came time to face the facts. Either stay healthy or stay working. Unfortunately these had become mutually exclusive propositions. "Retiring" (aka going on disability) was an extremely difficult decision to make for my alpha female superwoman self. My career has always given my a great sense of achievement and I've loved the mental challenge of it. So it was a big leap to give up such a big part of my life. The kicker that made it easier was thinking of Grandma. First she always told me "you work too hard, take time to smell the roses!!!". Of course I didn't want to ever tell her that some of my hard work was a learned behavior from several generations ;) I also though of how wonderful her last few months had been from diagnosis to death. She got her "chinese massages" sans "happy ending" almost every day. Ate tons of orange freezes, soup and whatever her heart desired. And most importantly she got to share her feelings (both positive and negative) and say her goodbyes to all she loved. Would I be honoring her if I kept pushing myself and didn't get the chance to do the same???

So here I am today managing another illness. Thankfully superwoman/pig is getting better!!! Since I'm not working I actually have time to allow myself to be sick and take long luxurious naps when needed. Although being superwoman/pig I'm feeling a bit guilty about taking a haitus from my Cystic Fibrosis Foundation Festiv-ale beer tasting chairperson duties. But to be true to taking care of my health first, I must get over this too for now. Eventually I'll get back to volunteering, back to pulmonary rehab, back to yoga and back to my superwoman/pig self...eventually.

Well for being my first post it was a bit longer than intended. But it should be an interesting ride for those that wish to keep up. I'll try to get the word out soon.

Thanks Grandma!
Love Steph

P.S. more to come on the pig thing.