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!

Tuesday, July 11, 2017

Saved by Salad



One of the things I insisted be in my care plan was a consult with a registered dietitian (RD). I know what you are thinking, “But Kelly, didn’t you.., don’t you..?”  The answer is “Yes”. Yes I had worked in clinical nutrition for over 12 years and yes I have a master’s degree in nutrition. You’d think I could have figure things out for myself. Well, no. As I’ve mentioned in previous posts, the osteoporosis diagnosis really threw me; I felt so overwhelmed, so beaten, so tired. I knew I needed to make some changes where my diet was concerned and quite frankly, I just wanted someone to tell me what to do.

I had been following a local nutrition practice on Instagram and I really liked their approach. I ended up meeting the owner at a networking event, never thinking that I would refer myself! I reached out and made an appointment with an RD on her staff.

I liked Dana right from the start; I knew I was in a good place. In our first meeting, she brought up keeping a journal. I have always hated keeping journals, writing down every little bite, dragging around a stupid notebook. But this is 2017 and (like the old saying goes) there is an app for that! She introduced me to Recovery Record, a tracking app for logging meals, behaviors, thoughts, and feelings. Dana demonstrated it to me on her phone, it seemed simple enough; I agreed to try it.

 The thing is amazing! I free text what I eat; no food lists to sift through. I snap pictures of my plates (I would do it for Instagram anyway!) I answer simple yes/no questions (that I can choose from a master list.) She even provided me with a way to share my entries with her. In our appointments, she logs on to her lap top and pulls up my dietary life; it’s pretty slick!

She asked me if keeping the log made me notice anything. I said, “Yes, my answer to the question who did you eat with’ is almost always ‘alone’ and my lunches are uninspired or non-existent. This makes me a bit sad”
  
As we discussed what might be contributing to my issues with lunch, talk came back around to the little voice inside that tells me: I am not important enough, I am not worth the time, I don’t have enough time, I should be doing other things, I don’t deserve to take time for a nice lunch. I should be thankful that I have a husband that works all day and devote my energies to him. (I do realize that this little voice is an ass-hole but sometimes it just won’t shut up!)

Dana suggested that one of the most healing acts of self-care that we can do for ourselves is to cook for ourselves. She offered an option that would be time friendly and also provide an attractive and nourishing lunch, Mason jar salads. I had heard of them but never thought much about them. Well, I am now a fan!  I also got the ‘buy-in’ from my husband; he loved the idea and said he would gladly take one in his lunch.
My first attempt at Mason jar salads

It’s been a super fun process, gathering my jars, reading over the various recipes, shopping, chopping, and assembling. I even enjoyed the clean-up! The salads turned out gorgeous and hubby was impressed. Instead of viewing lunch as an inconvenience, I see it as an event to look forward to; a chance to do something nice for myself that will nourish my soul as well as my body. And I am so worth it! (Take that little voice!)

Tuesday, June 27, 2017

The Forest for the Trees: is there such a thing as too much support?



I’ve always had a certain affinity for getting in my own way. While I love, love, love attention to detail (and who doesn’t!), it is easy for me to get lost with the devil and miss the bigger picture. Recently, I’ve come to realize that for the past two months I’ve been so caught up in the particulars of managing my chronically ill life that I was putting the actual living of my life on hold.

Since my diagnosis of Osteoporosis, I’ve gone to physical therapy twice a week, have been seeing my therapist once a week, checking in with my nurse manager, and logging all my meals for the dietitian I’m working with. I also found myself getting re-involved in all kinds of on-line support groups and pages for Crohn’s, NF, osteoporosis, and chronic illness. As a professional patient, I had been clocking some serious unpaid overtime; all in a colossal effort to get well.

And then there's life: The A/C stopped working, and we had a fire in our basement (stories for another time.) An organization I volunteer with alerted me that I needed to set goals for the coming year and gave me two days to do it. And least I forget, I have my normal activities of daily living to contend with; shopping, cooking, cleaning, etc.; sometimes I bathe.

Last week, I told my therapist that I felt like I was becoming increasingly irritated. I told her, “I have too much stuff, too many appointments, and I keep adding more stuff; I’m in the weeds!”

She reminded me of my power of choice and that my appointments are for my benefit, nothing about the therapy process should hurt or cause me angst. It is acceptable (and encouraged) to schedule my appointments so as to suit me. She also reminded me of the word “no.” What a great word! It’s one of the first words we learn to say and learn to hate to hear.

So I began the process of questioning where I was spending my health managing energies and ascertained that I may have been afraid of doing something wrong or missing out on any little bit of information that could aid me in my quest for wellness. As I looked deeper, I found places to make cuts without sacrificing my care.

Physical Therapy is done; I know the exercises and feel confident I can do them at home. Instead of seeing my therapist once a week, it’s now every other. I also spent some time on the computer leaving groups, unfollowing pages, and unsubscribing from newsletters. I weighed the pros and cons of volunteering and came to the painful decision that I just don’t have it in me to be committed at the level required so I wrote a letter of resignation (or as I called it, a letter of liberation because it actually felt freeing to write it.)

This past week was my first whole week with no appointments. I spent the extra time in my yard, digging, planting, moving rocks, and cutting back unruly vegetation. I was able to see the progress I made and it felt rather good.

One of my yard projects


By taking a step back and pausing to examine my life I had discovered that when you get past the trees, the forest is a sight to behold!
Forest, trees, or both? What do you see?

Monday, June 5, 2017

Life as a Rice Pot



The fickle nature of chronic illness has a way of leaving me feeling paralyzed, stuck, and out of options. Many times, I can find a good work around to get myself out of the jumble of the day but alas, sometimes circumstances really suck and become more than I can (or want to) handle.

A few months ago, my endocrinologist wanted me to get a DXA scan; I had just had one a year prior and even though it had shown minimal bone loss, I thought it odd that she wanted another one so soon. I saw her last month to go over the results. In less than 15 minutes I was told I had osteoporosis in my spine, given a choice of two medications, and sent on my way.

I sat in my car and cried for a few minutes, and then I played the blame game. I blamed myself because of my crappy diet and non-existent exercise routine. I blamed myself for being cavalier with my calcium supplements. Then I got angry at Crohn’s for being a big jerk and just for good measure, I cursed my temperamental, menopausal ovaries.

Once home and alone with my scrambled thoughts, I went straight to the computer and enrolled in ‘Freak Out 101’ at Google University. I googled osteoporosis, I googled the medications, I googled until I had about a dozen tabs open!

Full disclosure: This isn’t my first rodeo with bone density issues. About 14 years ago, when I was new to Crohn’s and all its wonderment, my GI doctor was concerned about my prednisone use and mal-absorption issues related to the Crohn’s and ordered a DXA scan. I was skeptical but the scan confirmed osteopenia in my hips and osteoporosis in my spine.
He prescribed Actonel, a medication that most women don’t start taking until they are in their sixties, I was 37. Actonel wreaked havoc on my upper GI tract and caused esophageal damage. Enter PPIs (protease pump inhibitors), namely Prilosec. After two years my bone density improved and against medical advice, I stopped taking the Actonel. I could no longer tolerate the burning in my throat. I needed the PPIs for another six years. I was anxious to wean myself off of them because… they can interfere with calcium absorption and… drum roll please… may contribute to developing osteoporosis! That’s kind of fucked up.

Osteoporosis, my old friend, had returned and I had no clear picture of what my future might hold. My GI doctor and GYN doctor have deferred to my endocrinologist and the endocrinologist is pushing drugs (scary drugs.) She is treating the osteoporosis, not my whole being; I pondered, “This medication can’t be my only option”, I was stuck!

When I’m feeling this way, I like to recall a favorite lesson from my master’s program, “Life as a Rice Pot.”  The rice pot is the symbol of movement; the creation of possibility, a synonym for life.  Picture a covered rice pot sitting atop a flickering flame, contents simmering away.  In time, the lid will start to jiggle and jump, steam will escape. Everything is moving in harmony as the once inedible rice is transformed into nourishment. Not enough heat and nothing happens, too much heat and the whole thing might blow!

So I sat quietly and thought, “I think I may have stopped paying attention to my rice pot and let it boil over. Now the flame is out and nothing is moving.” I didn’t know where to begin. Then it hit me, this is my life, my health, and my rice pot; I knew what I had to do. I re-lit the flame by making a phone call and asking for help.

My insurance company has an “Ask a Nurse” number, I called and as coherently as I could, I explained my situation. That I collect chronic illnesses like someone might collect sea shells and that my latest diagnosis and drug options had me at a loss. I discovered they have a case management program AND that I would qualify. That call led to another call and I now have a nurse case manager that is helping me manage my care. She connected me to a pharmacist so I could ask about other drug options. I have spoken with a social worker that has helped me find a therapist (Houston, we have simmering!)  I also started physical therapy and have been learning safe and smart exercises for balance and core strength.

While this flurry of activity has been time consuming and tiring, it has also been empowering and a big boost to my confidence. The phone calls, appointments, and exercise have forced me to put myself and my body front and center, back into my awareness. It’s a lot of work, tending this rice pot; I am doing it and I am worth it!