On Giving a Face to Invisible Disease: Stronger with UC

This post was inspired by the story I shared with the Crohn’s & Colitis Foundation of America’s call for IBD stories during IBD Awareness week, Dec. 1-7, 2017. By sharing my story, I can help make #IBDvisible, giving a face to these diseases.

I was diagnosed with ulcerative colitis in fall 2015.

That year I had put off tests and doctors’ visits, as I was uninsured at the time—but after months and months of bleeding, I was severely anemic, had lost a lot of weight and was going to the bathroom more than 10 times a day. I didn’t know it, but my life was in shambles. I felt totally unstable, as I was marginally employed and very stressed about finances. When I look back at photos from that time, I can’t believe I kept a smile on my face despite how much I was suffering.

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Hospital smiles.

After a multiple-day hospital visit and colonoscopy in 2015, my new-to-me GI doctor told me about my diagnosis. Flash forward to my most recent appointment that marked the year anniversary of that diagnosis. My doctor couldn’t believe it had only been one year. In that short time, I’d tried a host of medications, suffered the extreme side effects of steroids and withdrawal in an attempt to control inflammation and symptoms. I’d undergone a second colonoscopy, and together we decided to try a biologic, which, in tandem with an SCD-inspired diet and lifestyle, has helped me achieve remission.

Coming through this initial experience with UC has made me a stronger person, and it has dramatically changed my life. I realize what it means to really feel good. I’ve learned to be more patient, and to have faith in myself and my community. It’s enabled me to see how mentally resilient I can be; how gentle I need to be with my body (and mind); how important it is to practice healthy self-care; and that it’s OK to feel broken and vulnerable.

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Puppy kisses

I realized the value of nutritious, cooked food, stress relief, and great sleep. I’ve built a good relationship with my doctor, which required a lot of trust, especially while on medications that could do damage—but also help me heal.

UC has shined a light on the most important people in my life, including my boyfriend, our families, and my closest friends, who support me through it all. Most importantly, having an invisible disease has helped me see and understand other people’s struggles and suffering, visible or not.


I accept that remission and flares may come and go. There may be bad days still, with slow progress and challenging decisions. But I try to move forward with confidence and an attempt at grace…especially when my family deals with me on prednisone!


I look forward to greater research on the potential and long-term effects of the newer IBD therapies, especially as they relate to women and gynecologic issues. I’m interested in seeing more studies about IBD connections with other immune-related illnesses, including alopecia, dermatitis and arthritis.

I encourage anyone with IBD, or any chronic condition, to find someone else with the disease to talk to. That’s one of the single best things I’ve done this last year—connect with the IBD community, through friends, acquaintances and online forums.

Relating to someone else, especially with a disease that affects the not-talked-about bowels, is incredibly helpful. It’s a relief to know I’m not the only one dealing with a gut disease that at times can rule my life.

I try to take initiative in my care. I strive to be assertive and inquisitive with my medical team and family. I acknowledge and let go of what may be beyond my control, and I carefully work to change what I can control.

Do research. Get support to try different approaches and think outside the box, especially about your lifestyle. The seemingly dramatic changes I made and rollercoaster of meds I tried were worth it. I believe I’m a different person because of UC, but overall, I think I’m a better person, too.

To My Sisters

Hi ladies, hi friends, hi loves,

This morning I heard my town in the first headlines on NPR. Five students were killed in a school bus accident yesterday afternoon in Chattanooga. While I had heard of it last night, in a text from my dad and all over the innerwebs, the sentiments didn’t hit me til this morning. Whatever senseless acts of tragedy happen, I’m reminded of those folks I love. My family, who I am fortunate to see and spend time with on a regular basis, and my dearest friends, or my other family, who are spread out, from Knoxville to Louisville and Louisiana to California.

What’s going on? How have you been? What life transitions are you juggling? What do you have to celebrate? To share? To grieve and mourn for? What are you looking forward to? Who or what do you love right now, today? What are your fears?

I crave our conversations and shared space. I yearn for and cherish those connections. The ability to share freely, without fear of criticism. A true sisterhood. You prop me up and keep me going.

I must admit I’m likely the youngest in our group, and this year marked my 30th lap around the sun. My summer birthday was celebrated quietly with boyfriend Charles. I sat at home, drank a few glasses of wine, and commiserated with Kelly on FaceTime about the inherent wisdom that comes from getting older, but also these new feelings of aloneness, calmness, intuition and peace. Looking inward. So this is my way of connecting with you, beyond text messages, beyond Likes on Facebook, and in place of a random visit.

Just after overcoming a few flares with ulcerative colitis—this shit disease that keeps on giving and is severely aggravated by stress and major life transitions that shake my stability—I finally finished a year-long(ish) round of steroids. You helped me get through that time, even if we didn’t see each other. The reminder that a normal life—free from hyper-emotionalism, rage, a ravenous appetite, paranoia and unwelcome bodily changes—was just around the corner.

Some mornings I get up and so desperately crave coffee and breakfast in a house full of women friends, filled with nothing but music and gossip and talking and maybe sitting in a pile of blankets watching old movies. I wish it was closer—I wish we all were closer—but the distance helps me cherish those times even more. And I have a happy little circuit here in Chattanooga, a health routine that involves (you guessed it!) going to bed by 9:30, eating as healthfully as possible, tea with Chattanooga friends, and quiet time at home with Charles. It keeps my guts happy and helps me show up for life on a regular basis.

I recently started working as the site coordinator for the after-school program at Chattanooga Girls Leadership Academy, an all-girls charter school a few miles away from our apartment in Fort Wood. It’s a part-time job that accommodates my ongoing freelance writing projects, but most importantly it satiates the overwhelming need I have to work in public service. It also was the manifestation of many intentions, many seeds planted, of needing to be of service. Of being in an all-women environment, of putting my writing and communications talents to use for others, and uncovering untapped skills along the way.

It’s not totally all-girls, as boyfriend Charles teaches high-school biology and environmental science there, also a nice convenience. But it is an incredibly challenging and rewarding environment, and I am so grateful for the shifts in perspectives, career and aspirations. So much of my own journey was fueled by your influence. Your guidance. Your listening. Your encouragement. Your persistence to take each rise and fall of this rollercoaster with loving kindness and compassion.

This election season reminded me of the power women share, even if we didn’t win. Women DO rule the world and we are strong beyond our belief. In my new position at CGLA, I feel so lucky to empower young girls to dream big, work hard, and find their own strengths and independence. I feel lucky just to listen.

I’m not certain if this is the best medium for sharing this with you, but it felt right, and it felt immediate. I am so grateful for the love and support you show me that spans great distances—physical miles, perceived distance, or space between communication, as we dig deeper into our own little lives, spread across the country like little wildflowers, growing and blooming where we are planted, at least for now. I want to stay in communication no matter what. Our connectedness, and our sisterhood is serious(ly good) stuff.

I hope sometime in the next year we can all gather, at a cabin or at the beach, to watch movies, do yoga, nap in hammocks, drink wine and talk. A lot. And someday, hopefully sooner than later, I’ll have a spare bedroom for you to crash, and we can sit around in the mornings catching up and laughing over shared times. (Though if my memory serves me, I am still that kid at a sleepover who is awake LONG BEFORE everyone else!)

Even if that doesn’t happen—that we all get to gather in one place—I want you to know I love you! I think about you as my family. You make me a stronger woman, and together, we are stronger. Keep sharing your wisdom, keep spreading your love, and keep your damn chin up. There are bright beginnings just around the corner❤.

Love and hugs to the moon, and send me your damn mailing address.

Laura Jane

On Friends and Ferns

A sense of place and personal history defines us more than I realize sometimes.

Those silly “On This Day” Facebook pop-ups remind me of some of my greatest joys and sorrows, or at least the ones I posted on social media. I end up spending too much time reminiscing, I think, in life. But it touches on a significant point: part of realizing where we are in life comes from remembering, reconciling and celebrating where we come from. Our past.

In a few days I’ll embark on my first-ever week-long fall break. Charles and I are going to the beach with his family, and I’m looking forward to a week of relaxation, pretty sunsets and vitamin sea. I like Florida and all of its quirkiness, and not just because of my adventures in Miami and beyond. Hopefully we’ll be able to hike for a day in the swamps and forests around Apalachicola. Those areas seem so unique to Florida and are so unlike what I know in deciduous, hilly Appalachia.

In past posts I mentioned adopting some cacti and plants this year. One fern that my mom helped bring back to life this summer seems to bring back a lot of memories, cherished and special and tear-jerkers.

My thriving fern and baby spider plant.

For almost a month I’ve been working at CGLA, an all-girls charter school where Charles teaches, in various capacities. Today I’m teaching my second creative writing club. It is all at once wonderful, horrifying and overwhelming. I admit I have very limited teaching experience, and I’m finding the girls seem way more interested in sci-fi and fiction than journalism and the style of non-fiction writing that I seem pulled toward. Just being around (much) younger people is a change for me; most of my work life exists in marketing and such, putting me in an agency setting, or even more isolating, in the confines of my house, left to communicate with the outside world through email, phone calls and very rare face-to-face meetings.

So again, overwhelming is an understatement; but I’ve found joy and reassurance being among the students. They’re hilarious and ridiculous and kind, full of energy and louder than I expected. (Though really…I have long prefered quiet dark spaces where I can work alone for long stretches of time. It will take some adjusting.) In the few weeks I’ve been there I’ve been reminded of my own time in high school—working among fellow Notre Dame HS alum and former teachers has helped! Those were scary years when I felt out of control and so sensitive to what was going on in my life. I wanted people to like me. I wanted boys to like me, I think. I wanted to do things that went against what my parents, teachers, church and role models encouraged me to do.

In preparing for my creative writing club, I can’t stop asking, What the hell did I write about in high school? Most of my personal journals are painful to read. I was hurting from my family’s division and I suppose coping the only way I knew how.

But this morning, I watered that special fern that is now thriving, since I’ve learned how much water and light it needs. Not too much, not too little; just right. The Mama Bear of my house plants. New curly, fringed leaves recently budded for the first time since I’ve had it. A marked season of growth for both me and the plant—a childhood friend sent me the fern, and some others that didn’t survive the winter, when I was in the hospital a year ago. (A memory that brings up more tears and emotions than I know how to deal with, categorize or process this morning.)

My hospital adventure last year

That fern reminded me of the days that friend, Sarah, and I spent running around in the woods. She lived one neighborhood over from me. We would make the trek to meet halfway and play in streams and creeks along the way. We usually ended up at her house, I think, and if I recall her mom always had great snacks, her backyard a trampoline, and her room a fish tank. Sarah and I were inseparable for a number of years. Her Dad, our hilarious soccer coach, brought me to my first R-rated movie—Event Horizon, which I think would still horrify me to this day. I remember talking about when we would get our periods and what it would feel like, and sharing those girlhood secrets about crushes we had and such.

What stands out to me now, and what I still have buried away at my dad’s house, were the journals we wrote to each other over multiple summers. We would write a notebook to one another, talking about our day, our parents, our lives, and whatever else was going on at the time. I don’t think there was anything special about what we wrote, but just the fact that we did—that we maintained these spiral-bound notebooks for each other—reminds me how close of friends we were, and how important that relationship was to me.

Now I can see that it wasn’t just the relationship, but the influence and encouragement to express myself, reinforced by all forms of education along the way. While I remain somewhat overwhelmed by how to introduce the concept of CREATIVE WRITING to my small troupe of budding writers, who I’ll see this afternoon, I’m reassured that if I can impart at least one thing to them… it is to write a lot. To write often. To write to your loved ones. And that if writing is your thing, and you like it, don’t stop. You never know where it will lead you, or what it will remind you of, or what you’ll realize through writing.

I realized that my influences throughout childhood, into high school, were awesome. They didn’t feel like awesome years at the time, jam-packed with awkwardness, parent-defying moves and trying to figure out life lessons, some of which I still grapple with today, but now I see that they were exactly as they needed to be. Filled with friends, running around in the woods, exploring new things, sharing secrets in notebooks, and solidifying a lifelong habit of writing.

Thank you, Sarah, for being my childhood friend and correspondent, for your continued love and gifts, and especially for the thoughtful gift of ferns last year. I may have killed most of them, but the one that’s hanging on is beautiful. It reminds me daily of where I’ve come from, and that with the right attention, the new opportunities and blessings will continue to grow for me.

On Diving into Life

Tuesday, August 2, 2016 • 5:41 a.m. EST

Sometimes getting older helps us see our most vulnerable truths.

I awoke to a dream of trying on clothes in an almost-abandoned mall. The store sold clothes specifically made for people with ulcerative colitis and Crohn’s. I couldn’t really figure out why, as the condition doesn’t lend itself to needing specific clothes; quite the opposite. Most people would never be able to tell from the outside, the exterior, that I struggle with an autoimmune condition.

Regardless, I was trying on beautiful blue and gray dresses with long knit sweaters over them. They were perfect, my size, and on sale. I was walking back into the cavernous dressing rooms that felt like a behind-the-scenes place when I woke up, 5:07 a.m., ready for the day.

Like the good ole’, prednisone-fueled times, I thought to myself.

Earlier this week I started my annual birthday review, a walk down my brief history of celebrations and memories, from the pool party birthday days of my toe-headed youth to the first kegger my friends threw me for my 18th (sorry Dad).

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But mostly the photos from my early 20s kept resurfacing. The summer at the end of college, in my first apartment, when Lark and I spent nearly every afternoon at her pool, and the season felt as if it culminated with my 21st birthday kegger—an inebriated, music- and volleyball-filled party. I think the cops came, a few times, which felt like an accomplishment.

That moment stands out less then the moments of blissful freedom that defined those years. One song defined it best—Built to Spill’s “Goin’ Against Your Mind,” one of their 2006 releases from when I worked my afternoon radio DJ shift at WUTK, the college station.

At more than 7-minutes long, the drum- and guitar-filled jam was a rare treat to play on air. At the station, I shut the door and cranked it up in the booth as loud as it would go, thrashing around and singing to myself.

I still do that when I hear it. There’s something beautiful in not just remembering those totally bliss-filled moments, during a time of life when things were absolutely carefree. I’m so glad I experienced that. I’m so glad I can reminisce. I’m so glad I can still live so freely and with such courage.

But mostly I’m glad it’s in the past. Where I am now, whatever you want to call it, living with dreams of fun work-like clothes, waking up at 5 a.m. to listen to Otis Redding and write, and relishing in the “children” Charles and I adopted for my birthday this year—seven new cacti…those are the things I am excited about this year.

Don’t get me wrong. I’m going to bop around, and I already have this week, to Goin’ Against Your Mind, as loudly and brashly as I did at age 20. A girlfriend recently indulged me in a multiple-cocktail daytime adventure, much like I would have in my mid-20s though with less of a hangover, and this weekend we’re going to float the Hiwassee, hopefully without the blistering burns I acquired in past years.

Nostalgia is sweet. Growing older is sweeter. Recognizing your place, on your karmic path, and finding the wisdom, and the emotional breakthroughs…and realizing, maybe for the first time, that you get to keep them all to yourself? That is the sweetest.

Visiting my Mom over the weekend, we flipped through family photos that had been my grandmothers. In one that was likely my first Christmas, Andy and Wendy, 2 and 4, were sitting beside me, looking cute with trim haircuts. I was a baby, looking drooly and somewhat satisfied in a bouncer seat. The three of us were all looking off, probably at Mom while Dad took the photo. I joked to Mom as we flipped through the photo, “Jeepers Mom, I look like I’m about to take a shit or I need to eat!” We laughed at the indistinguishable look of a baby.

Every birthday, every little shift and big experience, every breakthrough, every diagnosis is part of our path whether we like it or not. Sometimes we fly, something we can relish those sweet memories and moments. Sometimes we feel like we fail, thinking back on a year marked by disease, doctors, diagnosis and daily problems. But maybe being vulnerable and really diving into life isn’t defined by the birthday parties and memories or experiences we want to plan, but instead by the oh-shit moments that catch us off guard. Diving into life, without being able to control everything, somewhat unexpectedly, is what it’s all about.

Looking back, and looking forward
I’m receptive to the wild winds of the universe.
I’m receptive to all the shit that life throws me.
to autoimmune diseases, colds, cruddy eyes, biologics.
to mistakes and errors…
…that lead to some of life’s most beautiful discoveries.

I’m receptive to failing
I’m receptive to FLYING
to soaring
to embracing all of life’s gifts
all of the seeming failures, unmade beds, missed opportunities
that lead to breakthroughs. Gifts. Smiles. Sunshine.

I’m receptive to this karmic path.
I embrace my 30th year with a different, hopefully emotionally mature mindset.

And in so many ways, when I looked at that picture of myself, sitting among my siblings at age <1, either about to shit or needing to eat, I laugh now that not a lot has changed.

Not a lot has changed.

Polishing the Mirror in Argentina

Thursday, June 2, 2016 • 8:42 p.m. EST

Nearly four years ago, I sat quietly in my room on Christmas Eve about to take a trip that would ultimately change the course of my life. My family was taking this 2012 Christmas off, so to speak, as I was flying out the next morning for my first trip to Cordoba, Argentina.

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My sister and best friend Wendy has lived in Cordoba for more than five years. Back in 2012, I had no idea what kinds of adventures I had in store for me. After that fated Christmas trip, not without its own interesting twists and turns, I found myself making major life changes. Three months later, after completing yoga teacher training, I moved to a bus in Miami where I spent my days writing, reading, making and selling pottery, traveling and experiencing a different way of life. I’d move back to Chattanooga and create a different space for myself, surrounded by loving people and places. In many ways, I like to think that Argentina—and the decision to take that two-plus week trip out of the country and in the Southern Hemisphere—was my tipping point. It led to a beautiful adventure. It showed me colors and cultures and experiences, as well as different ways of thinking and living, that I allowed to influence me in positive ways.

Any sense of traveling and experiencing other cultures reminds me of the importance of that exposure; something to make you feel small, to minimize the damages or wounds (or wonderful things) that seem overwhelming day in and day out. It helps me shape my life and affects what I choose to fill my space with, figuratively and literally. Since those initial seeds were planted, it’s incredible to see what richness I’ve invited in.

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Tonight I sit quietly in my room, a different space, one that I share, and prepare for my third trip to Argentina. This time I will ring in a different solstice—just as I was getting accustomed to the shaved legs and shorts that these hazy, Tennessee summer days require, I’ll be headed to a sunny but brisk winter. Whereas before I travelled alone, I get to bring Charles on this grand adventure. We’ll be visiting for June, with a weeklong road trip to Jujuy and Salta with Wendy and Fer. It will be my first experience outside their province. I’m eager to witness the geologic wonders that these lands hold. Some salami, wine and cheese won’t hurt, either.

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Goodbye for now, creek days!

The build-up to this trip hasn’t been completely smooth, though we’ve managed to survive with the incredibly strong support system we have, offline and online. Charles and I found a sweet little apartment and combined spaces in a matter of two weeks. He completed his school year, both at UTC and CGLA.

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I’ve been on a health rollercoaster since early spring, of course. In a last-ditch effort to pull my guts through an ulcerative colitis flare, I had another scope three weeks ago, and I was admitted to the hospital for a round of IV steroids.

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While there I felt in many ways like an undercover agent, or an undercover patient if you will. Volunteers and nurses would ask where the patient was, laughing after they saw my IV. The ‘roids helped immensely, and I think I’m getting over the hump of a flare. Learning to live with this disease has been a huge, slow learning curve that’s shown me how resilient I can be. Daily I work to maintain patience, confidence and strength, and belief that the steps I’m taking will heal me. My most recent scope did show that—lots of great healing since my diagnosis in October!!!—but there is still work to be done. 25 centimeters, to be exact.

Through meditations, yoga, reading and the wildly funny and loving friends and family of mine, sometimes I choose to see ulcerative colitis as the gift, or lens, that allows me to more truly see people’s hearts. While I know a month-long adventure really isn’t just what the doctor ordered, I believe a vacation, the desert, and a sweet reunion with my sister and brother-in-law in their home is very powerful medicine.

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On a lighter note, it’s the gift that keeps giving. I almost fit all of my clothes and goodies for the trip in one bag; but alas, my new tailpipe medications really do require a suitcase of their own. I’m happy to be laughing about it at least, and I know I’ll look back and giggle at these odd, turbulent times.

Tomorrow begins 24+ hours of travel for Charles and me, hopping through Miami and Santiago, Chile, before a Saturday morning arrival in Cordoba. Three and a half years ago, on that memorable Christmas morning, even a huge transportation slip-up couldn’t slow my journey to South America. Nothing, not even broken guts, can stop this trip.

Wendy, Fer, Argentina… I’ll see you soon!

On Ulcerative Colitis and Saying YES to Health

Saturday, Jan. 16, 2016 • 6:35 a.m. EST

I haven’t known what to write here over the course of the past few months. I’ve experienced the full range of emotions after being diagnosed with ulcerative colitis. Excitement at knowing what it was, discouragement at understanding that it’s an uphill battle to remedy, frustration at the mindset of modern medicine and it’s prescription-based approach to care…the waves of emotions and feelings come in cycles, just as my gut health comes in flares.

Ultimately, though, I adopted one of the more radical approaches to managing my symptoms by adopting the specific carbohydrate diet. It’s like super paleo, plus homemade (delicious) yogurt, to starve out the bad bacteria in my gut and allow the lining of my colon to heal. While it sounds simple enough—OK, so maybe it doesn’t sound simple—it took me two months of fighting to admit that I should at least give it a try. Taking 40mg daily of prednisone was the dealbreaker. It finally pushed me over the edge…as I watched my relationships suffer from the effects of my dramatic mood swings, my mental health suffer from the extreme feelings I experienced, and my physical health felt… well, just off. Shitty. Shaky. Achy joints after walking for more than 20 minutes. Poor sleep. Oh—and taking at least two more medications to counter balance and offset the effects of taking long-term steroids.

…yeah.

Being diagnosed with any condition certainly changes your outlook. For me, it was a huge wake-up call. I couldn’t see until recently, as I’ve slowly started to heal with the help of my support system and SCD, how sick I was. For YEARS. How underweight I was for the entirety of 2015. That my body was eating itself, or not digesting anything. I was malnourished. I was torturing myself, too, in the ways I was eating and drinking. I had no idea.

Managing a “chronic” diagnosis helped me realign my priorities. In the past three months I’ve gotten better sleep than I likely have in years. I’ve been able to narrow my day-to-day focus down to three things—exercise, health and family. I practice yoga four to six days a week and I started doing kundalini in the morning with Charles. I spend a LOT of time cooking and preparing food. I normally cook three meals a day, as processed food is no longer a part of my diet and eating out is nearly impossible (or just really expensive and not so healthy). I’ve had to let go of things and people and experiences that no longer serve me, or just don’t fit. I’ve said no, or flaked out, on more social engagements than I can count. I go to bed at 9:30 every day, and I don’t make time for much else beyond my relationship, my closest friends, my family, cooking, yoga and my job.

  

If I didn’t take these steps, I probably would have been hospitalized again and losing total control of my gut, mental and physical health.

Writing about those restrictions feels negative, but really those actions and changes in my life have been some of the most positive! I feel lighter. I feel more FREE. I feel like I’m back in control again after years of spiraling out of control. I uncovered some of my deep-seated stressors that are tied to stability, financial well-being and security, and I’m taking steps to mitigate those toxic stressors. Taking control of my diet—which at the time felt like one of the hardest decisions I’ve ever made—allowed me to see that I can do anything. I can make any change.

There is no limit to what I am capable of. Anything is possible.

I feel like I got a chance to start over fresh, with a clean slate. The mental haze and fogginess is lifting. I’m getting really clear about what I want to attract in my life, a habit a dear friend introduced me to through the Desire Map—if you haven’t read about it, then you should. I put a lot of care and attention into my food practices, thanks to the same friend who recommended the UnDiet book, authored by a woman who reversed the symptoms of Crohn’s.

I am on the same path to reversing my disease. That’s why it feels funny to say that I live with chronic disease. Just over one month ago, I was back to shitting 12-15 times a day. I was totally out of control again after a period of being stable and on new medication. I was on super-powerful antibiotics and scared that I would end up in the hospital again. I protested, I kicked, I screamed and I cried about not wanting to start SCD. It would take too much time and be too expensive, I said. I couldn’t live without grains and sugar and starches, I said.

Turns out, you can! And you’ll feel fucking great in about two weeks. Who knew?

Charles read the book for me and presented the science. I bought the expensive groceries and ordered my yogurt maker. I then spent HOURS, DAYS, probably WEEKS researching and obsessing over recipes, reading different perspectives, pouring myself over the internet to learn as much as I could about the diet. I did eventually read the book. My dear family members cooked food I could eat during the holidays, and they tolerated me talking about nothing but what foods I couldn’t eat. I dreamt about being able to eat cookies again.

  

Eat eat eat. Food food food. I had major undoing of deep emotional ties to food. Maybe it’s my Italian heritage. Maybe it’s our culture. Maybe it’s an unexplainable connection to all of those things combined. Either way, I feel like I made it to the other side. I’m learning my boundaries about when I talk about my special diet. I’m OK showing up at activities where I know there are no suitable foods for me to eat. I can even make SCD-friendly cookies.

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When I met my new GI doctor in the hospital in October, I demanded to know how I should change or alter my diet. He mumbled something about a book that one of his patient’s had found success with, but that there was only anecdotal evidence that showed a connection between diet and improving symptoms. (Ha—OK, “modern medicine.” You keep tooting your own horn and taking my money for dangerous prescriptions and procedures. I’ll go with the anecdotal evidence.)

In December, I was in his office again the week I started SCD. Even after a few days my gut health was changing quickly. I told him I couldn’t believe that among all of his patients, only ONE was on SCD. One patient! I understand it’s a hard decision to make—it requires a big commitment upfront, but it quickly becomes easier to manage—but really.

If someone told you could you POSSIBLY, MAYBE, JUST BY A CHANCE reverse the symptoms of a disease that keeps you from enjoying and living your life to the fullest—that affects your gut, your brain, your emotions—wouldn’t you do it?

He said that if he was given the option between a major lifestyle change and taking a pill, that sure, he’d want to take a pill. And really, I couldn’t be angry at him for answering that way. But that isn’t me, or it isn’t me right now.

That major lifestyle change showed me I could do ANYTHING. I could overcome ANYTHING. And really, I believe ANYBODY can do that if they tap into their drive and willpower. I don’t think it even matters what the change is, whether it’s one particular dietary shift or another, like whole30 or going vegan or vegetarian (though eating mostly vegetables, limited or no sugar and no processed foods is certainly the best). It just requires that you “practice” and practice discipline. When you have no other choice, those become a place of comfort.

It matters that you SHOW UP. It matters that YOU DECIDE how you’re going to live your life. It matters that you LISTEN to the signs and symptoms that your body is telling you. If you don’t listen when your body is whispering, trust me, IT WILL START YELLING. Because at the end of the day, your health is about all you have. As an adult, no one else is responsible for your health, and no one else will care as much as you do. Stop asking other people—especially doctors—what you should do or looking to them for answers, and take the initiative to DO SOMETHING for yourself. Otherwise you will continue to suffer. You will continue to hurt. You will continue to rely on the prescriptions, procedures and support of a broken “health”care system that doesn’t have YOUR HEALTH and well-being in its mission at all.

I can’t express myself and share my experience without writing those words. I’m not perfect, my health journey isn’t perfect, and just because I made the shift to a healing diet doesn’t exclude me from slipping up and sometimes not showing up for myself or for other people. I just hope that by sharing these words someone, anyone, can see that they, too, have INCREDIBLE willpower, strength, and the ability to make BIG changes in their lives.

Because you do. You can. And I believe in you.

Amen.

On Healing and My Health Adventure

Where are you now?

That’s a question that often comes up in yoga. Or it did today at least. My time on the mat has been limited the past few weeks, as have many of my typical interactions with friends and family. I guess that’s why I’m writing this. I guess that’s where I am right now.

I’m on a journey. You’re on a journey, too. From the perspective I’m trying to embody, the journey is about finding the balance of health in the body. The end goal, if such a thing exists, is in taking care of your body and finding your OWN health.

 

I write here a lot about my own emotional health and well-being. But now I want to write about my physical health. It’s something that’s very hard to talk about in day-to-day interactions. It comes up a lot, especially when working at Heaven & Ale, but it’s a silent thing. It’s hard to explain in a quip why I can’t do (or eat) this or that, or why I don’t have energy to do certain things.

Because I’m healing.

For the past nine to 12 months, I’ve been dealing with major digestive distress, which I believe to be an inflammatory bowel disease, like ulcerative colitis. I’ve experienced ups and downs, highs and lows, which have included losing my health insurance, successfully recovering from a flare near my birthday, and    uncovering a new way of fueling my body.

Unfortunately right now, I’m at a low point. I have insurance again. I’m waiting to see my regular doctor, who I hope can expedite me to a gastroenterologist, a delightful specialist who will be able to look inside my colon with a fancy scope. I’m eager to learn what’s going on in there, as nothing I’m doing has proven effective in easing my symptoms through this flare. What helped me earlier this summer isn’t working now.

 


What’s most difficult about this condition is that from the outside, you may never know that I’m sick. Some people tell me I look great—but they can’t see that I’m unhealthily skinny. I’ve lost almost 20 pounds in a short period of time. I weigh less than I did in high school. Unexplained weight loss accompanies extreme fatigue and dizziness when I stand up too fast, walk up a hill or go for a short walk in the woods. I don’t sleep well at night, and I experience bad cramping and pain. I sometimes get feverish in the afternoon. My fatigue and feeling bad has meant missed camping trips, missed Wilco concerts, and missed vacation time with long-lost friends. And missed work. Did I mention bloody diarrhea? For months? And going to the bathroom 10 to 15 times a day? Yeah, that.

With the help of friends, family, my sweetie (see below!), and cool authors, I’m on a wild, anti-inflammatory elimination diet that, with time, I believe will be the answer to whatever illness I have. But right now my body isn’t responding to anything I do. Not the prescription-strength probiotics, not the simple, vegetable-based diet, not all the fiber (or low-fiber low-residue foods!!hahaha) in the world.

That’s the gross side of it. But I have great hope. The best I can do is keep my spirits high. I’m OK with not eating bad-for-me foods for the next few years, or even the rest of my life. I’m OK with having to get a colonoscopy on the reg. I’m OK with these seemingly healthy changes that have helped boost my confidence. I’m going to do as much yoga as my body can handle in this state. I’m going to try really hard to maintain relationships, but it’s hard to tell even some of my closest friends what’s been going on, or why I haven’t been around or even called. It’s hard to reach out.

I am here. I am at a very low point. I don’t write this as a call for a pity party, or even a call for help. I’m confident I’ll get better, and that this is very temporary. I know I’ll get back to my normal weight, and to a place where I can heal, trail run, bicycle, maybe even consume a drop of alcohol one day. (Though I don’t have my hopes up on beer. Just give me cookies.)

Health, and my own health, has long been a priority for me in life, work and play. If I get nothing else out of this experience, it’s the understanding that NO MATTER WHAT, no matter how I got here or what my past is, I am fully responsible for taking care of myself right now. I am responsible for making decisions that boost my attitude and health. I am responsible for taking care of this precious vessel that houses my spritely spirit. And we’ve got an exciting journey ahead!

My super handsome and loving boyfriend with a huge tree of mushrooms.


I feel blessed to be interested in cooking as hobby, and to have such a strong support system of people who help me to make the most healthful decisions. I’m still working toward my dream job. I love where I live. I’m in a beautiful and nurturing relationship with someone who inspires me to be my best. I get to see friends and family regularly. I’m blessed beyond belief! I just need to get to healing my guts. It’s amazing to learn how strongly gut health and overall health are inextricably linked. There’s no doubt in my mind that will forever alter my views of health.

If nothing else, I’ve learned to say NO to many things so I can say YES to health. To life.

First the hair, now this, right? But it’s why I write—to tell my story and hopefully connect with someone reading it. Thanks for listening, thanks for your healing energy, and thanks for understanding where I am right now.