Saturday, October 14, 2017

Dear Physician: See Beyond the Diagnosis and See Me

Osteoporosis and I recently celebrated our six month anniversary. We commemorated the occasion with a follow-up visit to the endocrinologist. However, two weeks prior I received a phone call from the office informing me the practitioner I saw during my last visit had left the practice and I would be seeing someone named Katie. Fantastic!

Katie walks in and looks to be about 12 years old. I mentally call myself out for making judgements and try to keep an open mind. She asks what questions I have regarding the Prolia; I offer my concerns, fears, and thoughts. For one, people who have weak immune systems or take other medicines that affect the immune system may have an increased chance of having serious infections with Prolia. When I started to tell her I had discussed it with my GI doctor, she interrupted me.

“Well, Crohn’s really wouldn’t be an issue; we would be more concerned about someone like a transplant patient that would be taking immunosuppressing medication.”

I quickly told her, “Well, that’s me.  I take the same immunosuppressant drug that transplant patients take! So …?”

“Like I said, Crohn’s is not an issue.”

And my plan of eating better, taking my supplements, being more active, and rescanning in a year?  Katie squashed it like a bug stating my insurance probably wouldn’t pay for another scan so soon; I would be wasting time.

While Katie claimed to understand my stance, she put up every roadblock she could as she insisted the osteoporosis would only get worse, best to slow it down, start the medication now. She also did her best to scare me (my perception) as she spoke of the dangers of falling and risking a fracture. Her big whoop-di-doo advice? Find someone else to shovel snow this winter and use lots of salt on my driveway and sidewalks. I thought, “Good lord, does she think I’m an 80 year old widow?!”

As a parting gift, she addressed my elevated glucose and the risk for pre-diabetes. She recommended I cut back on carbohydrates and rattled off a list of the usual suspects. When she mentioned rice and corn, she tagged on “I know you don’t eat those.” In the next fleeting seconds, I thought to myself, “What the hell does she mean by that? Is she making assumptions about Crohn’s and diet… should I school her? Nah, I can tell she already knows everything.”  I nod in agreement.

As I am leaving I tell her, “I’m not being cavalier and careless; I love medicine, it has saved my life. I just want to make sure I have a solid understanding of my situation and the available options before I am injected with yet another medication.” She reminds me again of the many other people who tolerate the medication just fine.

Six months ago, I left this office in tears. Today I left feeling frustrated. I didn’t feel cared for and I certainly didn’t feel listened to. So I’m digging in, there is no way in hell I’m taking this medication until I read more about it. Yes, I realize there are people who have taken the injections and have had minimal or no issues but to quote one of my favorite villains of the cinema, Miss Lina Lamont, “People? I ain’t people!” And I’ve decided to search for a new Endocrinologist practice. Not for a second opinion per se, I know I have osteoporosis; I would like to have an honest conversation with my healthcare provider, one where there is listening and learning and not a lecture.Why is that too much to ask?
Photo credit:

Sunday, September 17, 2017


Words are curious creatures aren’t they? They can “cut like a knife” or be “music to our ears.” When someone we love speaks sweetly to us, we often find ourselves, “hanging on their every word.” Since my Crohn’s diagnosis, I’ve heard plenty of words and more times than not I’ve deemed them to be of the “cutting” kind.

From Co-Workers:
1)   “I wish I had Crohn’s. Just for a week though, then maybe I could lose some weight too!”
2)   “You look normal now, never lose that much weight again, you looked terrible.”
3)   “Should you be eating that?”, “Don’t you think those vegetables will rip you up?”, “Maybe that’s how you got Crohn’s in the first place.”

From The Always Too Jolly Nurse at My Gastroenterologist’s Office:
4)    “If you’re gonna have Crohn’s disease, Crohn’s Colitis (of the colon) is the one you want.”

Random Favorites:
5)   “I thought people with Crohn’s were skinny.”
6)   “Have you tried…?”
7)   “Are you sure you have Crohn’s? I think you may have been misdiagnosed because you don’t look sick.”

At first listen I considered these comments, these words, to be insensitive and uncaring. I thought, “How dare you say something so thoughtless, so mean… and to a sick person!” But after some reflection, I questioned whether or not these comments were in fact “thoughtless and mean.” Maybe and maybe not, I can honestly say I have no idea how they were intended to be heard.

So I ask you dear reader, how much weight do words truly carry?

The answer is none, until the listener decides.

I can chose to remain upset or I can chose to believe the comments I’ve heard were born out of ignorance and misinformation. Spoken by people who thought they knew more than they did. And if I look a little deeper, these comments may have come from a place of caring and concern and the words that came out of the speaker's mouth were the best they could come up with.

The knee-jerk reaction for remedying such misinformation is usually, RAISE AWARENESS!

Here’s an idea, instead of raising awareness for every cause, every disease, and every disorder, what if we worked on raising awareness of ourselves? What if, before we opened our mouths to speak, we paused to ask ourselves: “How will my words serve?”

Need help? Here are a few suggestions for navigating the waters of conversation from one of my favorite books, “Dancing with the Ten Thousand Things,” by Tom Balles:

Become a better listener: Do your best to listen. Refrain from thinking of what you are going to say in response. Resist the urge to fix, recommend, or suggest. Let your listening shape their speaking.
Ask open-ended questions: Asking, “What’s going on?” will encourage someone to open up more than accusatory questions like, “Should you be doing that!?”
Create partnership: Ask your friend or coworker (chronically ill or not) for specific ways you can become a better partner (e.g. what helps them laugh, what motivates them in moments of discouragement.) Adopt and act on their answer for the sake of the relationship.

So if you are feeling misunderstood, speak up. And know that there will always be people with preconceived notions that might never fully understand your situation. The beauty is YOU get to decide if the conversation is worth having and what weight the words will have.
Photo credit: iStockphoto

Thursday, August 31, 2017

Pointing to Myself

I was sitting in my therapist’s office waiting room when a young woman hurried in and plopped herself and a large bag down on one of the couches. She turned her body so that her back was up against the arm of the couch and her feet were on the cushions. She then proceeded to flip through her phone and a rapid session of shrill beeps, blips, and bops followed. Every once in a while she would LOL (for real.) She seemed to be in her own world, oblivious to all around her.

My first reaction to her presence was judgmental, “Who the hell does she think she is?!” I then checked myself. I was sitting up straight, in one chair, feet on floor, purse on lap, phone in purse set on silent. I was the perfect passive-aggressive poster child for waiting room decorum and this woman never took the hint. The noise, noise, noise! I found myself getting irritated.

Now I could have stewed over being irritated and started a rumination of every time in my life that I had been irritated, ultimately ruining my day, which in of its self is irritating (and one of the reasons for said therapy!) Oh I could have taken that poison like I had done so many times before. Not today! Instead, I opted to play a game.

“I point to myself” is a powerful and humbling centering exercise I was taught in my master’s program. It illustrates the concept of Oneness (i.e. we are all connected to each other and to the universe.) The way to play is to physically point at yourself and say (out loud if possible) “I point to myself”, then point at something or someone and say it again, “I point to myself.” Do this several times, always pointing to something different in between the times you point at yourself.

So I looked for the connection. I knew nothing about this woman but I could just about guarantee she was not there to deliver pizzas. Could it have been that she was there for the same reason I was, to work through some stuff that’s got her down? Once I realized that we had something in common, I was able to see a little bit of myself in her and a twinge of empathy came over me. And when I admitted that I had probably behaved in a similar manner somewhere in my checkered past, I saw some of her in me and cracked a smile. When I changed my perception, I changed my emotions and my irritation diminished.

Why do I bring up the phenomena of this woman in that moment? I’m glad you asked! Passing judgement without having all of the facts is a slippery slope to be on. Moments of minor irritation come at us constantly throughout the day (screaming babies, people who can’t park, or walk too slow, etc.) and more times than not, we find ourselves quick to judge. When some (or all) of the facts are missing, fantastic stories are often created to fill in the gaps, ultimately leading to the belief of falsehoods. Often times these stories cause unnecessary grief and misery (e.g. my Grinch-like irritation.) Who has time for that?!

While we might not have control over the moment we are in, we can control our perception of it. When I point to myself, I find the common ground. I find empathy and most importantly, I find peace.

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

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!