Tuesday, August 15, 2017

Learning About Neurofibromatosis Has Made Me a Better Patient

Last month the Children's Tumor Foundation had asked me to write something about my Neurofibromatosis (NF) experience. Something that could show what life with NF is about, beyond the doctor visits, MRIs and clinical trials. I'd like to share the link to the article I wrote for them. Thank you for reading!

The Children's Tumor Foundation is so much more than a funder of scientific research. They have revolutionized the field of NF research, forging new pathways for one reason: to benefit the millions of people living with NF. #ENDNF

http://www.ctf.org/news/gaining-knowledge-about-neurofibromatosis-empowered-me

Tuesday, August 8, 2017

Chasing Diet: A Tale of Letting Go



Last month I attended my niece’s high school graduation party. My brother, whom I haven’t seen in about three years, asked me the following: “So Kel, what diet restrictions are you doing these days?”


Odd question? Not really. If you know me, then you know that for the majority of my existence I have subscribed to some sort of diet dogma, especially since my Crohn’s disease diagnosis. Pills, potions, powders, points; you name it, I’ve done it. But before I tell you how I answered my brother’s question, I’d like to share a little of my diet chasing history.


Let the Chase Begin

Fifteen years ago, when Crohn’s disease entered my life, I asked my GI doctor about a diet. “Isn’t there a foods to include/avoid list?” He told me, “Simple, if something bothers you then don’t eat it.” I was floored, what kind of shit advice was that? He had to be wrong! Especially when a Google search of “Diet for Crohn’s disease” yielded 74,000,000 results! Who to believe?

Trained medical professional: 0     Strangers on the internet: 1


I spent hours reading and marveling over other people’s anecdotal stories of healing themselves with special diets and supplements always forgetting the key word, “anecdotal.” I dabbled in a few of the ‘cures’ but never had a big ah-ha moment. There seemed to be so much contradiction in the available diet advice: vegan, paleo, high fiber, low fiber, raw, cooked, etc. I did my best to tune out the chatter and remain objective but it was challenging to silence the call of 74,000,000 voices. I kept chasing.


Off the Rails

Alas, episodes of remission were intermittent and I endured a few more painful flares of the disease but when the ‘Flare of 2008’ overflowed into 2009, I had had enough! I was so frustrated with the pain, the drugs, more drugs, and of course, food.


I shifted into panic mode and reignited my search for the elusive magic cure. I lost what remained of my healthy skepticism and started believing everything I read on the internet (again.) Ultimately, I jumped on the gluten-free crazy train, even though I tested negative for Celiac Disease. At the time, gluten-free mania was just starting to pick up steam (not sure if Gwyneth was gluten-free yet.) Going gluten-free wasn’t for sissies, you had to be hard core creative. I persevered and rose to the challenge. I was ‘WOKE AF’ before ‘being woke’ was even a thing! I was proud of my enlightened way of eating; I was fanatically and religiously gluten-free for about two years.


Plot Twist

Eventually, I started experiencing some new GI symptoms: gas, constipation, bloating, and burping. My GI doctor assured me that I was not in active disease but maybe my GERD and hiatal hernia were cranky. Well great, here I thought I was doing everything right. I was living a high and mighty gluten-shunning life; wasn’t that it, the golden ticket, the silver bullet, the magic bean?! I kept at the chase, investigating other diets that I thought might help quell my GI distress; enter FODMAPs.


What the Heck is a FODMAP?

FODMAPs (Fermentable Oligosaccharides Disaccharides Monosaccharides And Polyols) are short-chain carbohydrates that are easily fermented by our gut bacteria, thus creating the IBS symptoms of excess gas and bloating. I played around with the diet (unsupervised of course) and identified stone fruits as my main problematic foods. As fate would have it, in my efforts to avoid gluten, I had been eating apples, peaches, and pears like a boss. I stopped eating them and soon noticed a decrease in my bloating and burping symptoms. Before long I was able to eat a relatively normal (yet semi-gluten-free) diet, in spite of developing an irrational fear of apples.


And…She’s Gone

After about a year, I started feeling blah and bloated again so I played doctor again and found even more FODMAP foods to avoid, tightened up the gluten restriction, and banished dairy foods (because, just in case.) I discovered pseudo-foods like ‘cheez’ sauce made from cashews, pudding made with chia seed and coconut milk, and cauliflower crust pizza (all delicious by the way.) The diet I had created made me feel isolated and fragile but definitely not trendy; I had convinced myself that I truly needed all of those restrictions!  My diet had become my identity.


It’s not easy to take a show like that on the road and as a result, I almost ruined a vacation to Key West. I was obsessed with scrutinizing the restaurants and food options on the island. Even though I found a vegan cafĂ©, gluten free key lime pie, and coconut milk smoothies, I wasn’t happy. I was tired and a bit pissed off! When I returned home, I said “screw it” and spent the next year eating anything I wanted; sending a big FU to my body and Crohn’s.


Reflections or (Shutting Up and Listening to my Body)

While I was in my “I’ll eat whatever I want mode”, something peculiar happened, I found that I was able to eat many of my once taboo foods without incident. No worlds collided, no cracks in the universe appeared, nor did the ground open up to swallow me once I started eating apples and donuts again. How could this be? I believe it all came down to control and fear.


I thought I could control my body, and ultimately control this disease by tightly controlling my diet. And this need for control was driven by fear; I was terrified of food!


I shunned ‘evil foods’ because I was afraid of the harm they might cause if I ate them. I ate ‘superfoods’ for fear of the health benefits I would miss if I didn’t eat them.


Since letting go of my need for control and the crippling fears that drove that need, I now view food as the object that it is. I have become more relaxed while eating and discovered that I can tolerate just about any food.


The Answer

OK, back to my brother. As I gazed upon my plate of glorious picnic fare, I didn’t see gluten, carbs, and dairy. I saw food; food that was lovingly prepared for a special occasion, food that appealed to me, food that I desired to eat. And at that moment, I realized just how far I have come in the past 15 years.


I looked up, smiled at my brother and replied, “I only eat tasty food.”


He laughed; and said, “Life’s too short huh Kel?”


I replied, “Yes! And food’s too good!”



Tasty food at home: Pasta and scallops!

Tasty food out: Greek festival delights!