Slowing down time between stomaversaries

Yesterday was Wilbur the Stoma’s birthday! I know the past five years since surgery have contained days and days of incredible adventures, but somehow the time has still gone by in a flash. With the sense of normalcy I now have with my stoma, the memories of  those early days are starting to fade.

I love looking back on my blog posts and videos as they help me to connect with who I was in those initial years after surgery, but so much of that time is also a blur. Life sprints ahead when I wish it would meander along in a stroll. It feels like summer was just here, and now the trees are already missing their leaves. Before I know it, I will be celebrating my six-year stomaversary. I want to slow down and savor moments more. Fortunately, I have found a secret for reaching that objective: nature journaling.

I first started nature journaling in the 1990s when my love of keeping diaries and passion for sketching merged and forever changed my relationship with nature. In my journals, I could playfully record natural happenings, curiously ponder what I was witnessing and write down my feelings about it all. At the end of a journaling session, a moment in nature and in my life had been noticed and preserved on the page (and in my memory)! Through my journals, I felt more connected to the natural world and to my soul.

The problem was, despite my best intentions, there were huge chunks of time over the years when I didn’t write or draw in my journals.  My post-surgery years were one of those stretches. What the birds, trees and flowers were doing during those moments I cannot say. And that made me sad.

I don’t get along well with unhappiness, so I am in the process of purging other things from my schedule in order to have more personal time to journal. As small details in the lives of box elders, woodpeckers, praying mantises and other flora and fauna are noted on paper, the hectic pace of my own life slows down and feels richer. Over the past two years, I have filled half the pages in a large sketchbook. That is a big improvement from when my nature journal sat mostly untouched after surgery, but I can do better. I aim to fill the second half of that journal in the next few months.

Mantis sketch

To further build my journaling skills, I attended a three-day workshop in the Marin Headlands of California last weekend with two of my favorite nature journalists, John Muir Laws and Clare Walker Leslie. The experience was beyond-words inspiring. We greeted the birds with our sketchbooks at sunrise, explored the coastline with pens in hand in the afternoon and captured the sunset on our pages. After a short break for dinner, we drew taxidermy mounts in the conference center’s teaching lab until bedtime.  At one point during the trip, I spent an entire hour sketching scat, tracks and other signs left by otters in their travel corridor between a pond and canal. Observing and recording the natural world that keenly for three days straight was remarkable and allowed me to slow down and ground myself in the present. Refreshed and inspirited, I left the workshop with a goal of writing and drawing in my nature journal more frequently.

Journaling on the coast

Otter trail sketch

One of the ideas that resonated most strongly for me was Clare Walker Leslie’s practice of recording daily “small wonders.”  When I didn’t have time to create an entire journal page of nature observations, simply documenting one exceptional image from the day could help connect me with what was happening in the natural world. Whenever I needed to recall those moments, they would be there waiting for me in the pages. I started my first series of these this week, and I am hooked.

Daily sketches

Time can’t actually slow down, and the 365 days until my next stomaversary will come and go whether or not I nature journal. However, closely observing and recording happenings in the natural world  helps each day to stand out. It’s hard for life to be a blur when you are looking with focused eyes. I might record tracks in the snow after winter’s first blizzard, the first blooms of spring, a spotted fawn in the tall summer grass and all the things that make the world so breathtakingly beautiful. Five years ago surgery gave me a second chance at life. It’s time I start paying greater attention.

“Ten times a day something happens to me like this – some strengthening throb of amazement – some good sweet empathic ping and swell. This is the first, the wildest and the wisest thing I know: that the soul exists and is built entirely out of attentiveness.”

~ Mary Oliver

Nature journaling

 

Birds and birthday cake

I turned 43 years old this month and brought in my next year with an overnight camping trip on the wide-open expanses of the Pawnee National Grassland in northeastern Colorado. Unlike last year when I was too stressed out to even celebrate, this birthday was full of calmness (other than the wind which nearly blew us off the prairie.)

All year, I worked hard to re-prioritize various aspects of my life so that I could stop feeling so overwhelmed. This meant saying no to a lot of projects and requests and sometimes disappointing people. It meant spending less time on activities I enjoyed a little in order to make room for things I loved a lot. It meant that, yes, I would miss out on some opportunities and activities, but the reward would be a life that felt closer to my heart and less stressful. Activities like yoga, art and adequate sleep were back in my weekly routine. Pulling into our campsite, I felt light and free knowing that I had rid my life of many of the distractions that had been weighing me down. How wonderful it felt to have no agenda other than to relax and take in this new place with Doug.

We pitched our tent, set up camp and drove the desolate dirt roads that make up the Pawnee’s  21-mile birding tour. With no agenda, we let curiosity be our guide–stopping our car and getting out to explore whenever we saw something that caught our eye. We watched horned larks and McCown’s longspurs devour huge meaty grasshoppers and a saw a green, algae-filled pond that bubbled with squirming salamander tadpoles in its soon-to-evaporate water. Doug took photos of windmills and the landscape while I stopped to sketch.

Windmill-for-webPawnee-Grasslands-journal-pWhen we returned to the campground, the winds died down and we made madras lentils from scratch on the camp stove, ate birthday cake and watched the abundant bird life singing from the cottonwoods around our site. As the temperatures tanked, we burrowed into our sleeping bags in the tent, but not before gazing into the vast night sky. With little light pollution, the stars were so bright that it was hard to pick out some of the usually prominent constellations.

Cooking-web-version
I crush some garlic for a tasty meal of homemade madras lentils.
Binoculars-and-Birthday-cak
I watch the bird life while eating birthday cake at the campfire.

The blazing morning sun belied how cold it was when we woke up the next morning, but soon hot drinks were on the stove and we were ready to start the day. After packing up camp, we drove to the popular Pawnee Buttes hiking trail. On the way there, we stopped to scan a prairie dog town along the road for burrowing owls. Much to our amazement, we spotted one in less than a minute! I couldn’t believe how lucky we were to see one of these birds. It was a first sighting for us and a big birthday treat for sure!

Buttes-jumping-for-web
Hooray! Let’s celebrate Heidi’s birthday!!!

Though I will always be a mountain girl, it was wonderful to be visiting the plains for a change. When I was a child, I was captivated with Laura Ingalls Wilder and the Little House on the Prairie books. My family went on many a road to trip to visit the places she lived. It had been a long time since I had been back to exploring a prairie landscape and the wide-open spaces surrounding the Pawnee Buttes Trail were awe-inspiring.

Buttes-hiking
Little hiker on the prairie.

When we reached the trail’s terminus, Doug spotted a horned lizard at the side of the path. I took out my sketchbook and sat down to record the shape of its head, curves of its tail and spiny body.  Had the creature not run off after ten minutes, I could have drawn it for hours. Here I was taking this little moment to sketch this little lizard, yet the peace I felt was as boundless as the prairie surrounding me. I could not think of one thing that would have made my birthday more special. I was in heaven.

Prairie-for-web
Enjoying the moment as I sketch a tiny lizard in an immense landscape.

It was time to head back to the city. We bounced down the washboard dirt roads and then finally made it to the smooth pavement of bigger highways. Soon we saw the familiar cityscape of Denver. It was hard to believe we had only traveled 100 miles to get home–the grassland was a different world.

In the days of bucket-lists full of exotic trips, it is easy to think you aren’t living life to the fullest if you aren’t voyaging to far-off locales. It’s not that one shouldn’t dream large, but family needs, lack of money, medical issues– including surgery recovery– and other things can make that safari to Africa or a climb of a Mexican volcano hard to manage.

Instead of feeling bad about what you are unable to do at a certain time, make it a priority to get out on some local excursions. Who’s to say that living fully has to happen in distant lands? I found a treasured moment hiding in six square inches of grass on a vast prairie only two hours from my home. I wonder what other incredible things are to be found right outside my front door?

Lizard-for-web
“Find pleasure in the simple things,” says the wise lizard.

 

A tough start to 2015

Welcome to 2015 everyone! While in past years I might have celebrated with a big hike, this year I felt a strong yearning to stay at home and relax, so that is what I did. Also, this year I am trying a different approach to the New Year by not setting any big goals for the upcoming 365 days. In fact, I want to do less in 2015. The pace of life lately has felt far too overwhelming for me. I want to ease up and take each day as it comes, filling it with things I enjoy without focusing so much on accomplishing x, y or z.

Part of that plan has to do with a rough end to 2014. My Dad’s health took a turn for the worse in the autumn. It is still hard for me to grasp, as Doug and I went on a trip with my parents to Portland and the Oregon Coast in August and my Dad was doing well. We toured museums, took in the gorgeous oceanfront scenery, visited brew pubs and all seemed fine. However, within a month’s time things changed unexpectedly and his health spiraled downward. I flew out for a visit in the end of October and it was heartbreaking to see the illness take such a toll. My mom has been trying her best to care for him and his doctors are working hard to find a treatment that works. My brothers and I all live far away making it hard to help day-to-day. I wish we were closer to provide more support.

I don’t know what to expect going into the next 365 days, but do any of us really? I do know that finding happiness in the present moment, taking things day-by-day and leaning on others for support is a good way to live in general and has gotten me through other hard times. This seems like a good approach as I head into 2015.

Touring Portland with my parents in August.
Touring Portland with my parents in August.

Help create an innovative ostomy product

A team of innovation fellows at the Center of Device Development at Northwestern University is looking for people with ostomies to help with their project. Please see the details below. Their contact information can be found in the survey.
Cheers,
Heidi
_________________________________________________________________________________
Hello!

My name is Joan, and I am an innovation fellow at the Center for Device Development at Northwestern University in Chicago, IL. I am a part of a mission to improve the management of ostomies, especially when ostomates are beginning their transition after surgery.  My team here is a group of physicians and engineers all eager to solve problems ostomates face, and our hope is to create a truly innovative product that ultimately tackles the biggest issues. (You can check our program and team here: http://cd2.northwestern.edu/innovation-fellowship/fellows)

We have NO current connections with any major ostomy supply companies in the industry; we are only tied to Northwestern University. However, while one of the goals of our academic program is education of innovation in medicine, we fully intend to create a product that people would actually want and one that can potentially be brought to the market.   Your feedback is invaluable and we look forward to your help! As a token of our appreciation for continued participation and feedback, we will be offering monetary compensation to show our gratitude.  We would like to begin these engagements starting next week.  If you are available for Monday Dec 9, please let us know your availability and if you are local to the Chicago area to meet in person, or if you can communicate with us via video conferencing (i.e. Skype) or by telephone.  Additionally, please complete this 5-minute survey so we can get to know a little bit about you: https://docs.google.com/forms/d/1TIEoIxIDaa5rNN1sYdR7hlUzmdT53pqTe4YmmiaqVZY/viewform.

Thank you again and we look forward to hearing from you soon! 🙂  

Thanks,
Joan & the CD2 team (Whit, Adam & Rachel)

Please help! Online inflammatory bowel disease community survey

Dennis Frohlich needs your help with a research study! Please see the details below.

Cheers,
Heidi
_______________________________________________________________

Hello everybody!

I am a graduate student at the University of Florida and also somebody with ulcerative colitis. I maintain the United Colon Vlog (http://UCVlog.com), which you may be familiar with.

For my dissertation, I’m conducting a research study on how the online inflammatory bowel disease community is created and maintained and how viewers and readers like you use these websites. I’m looking for people 18 or older to complete a short survey about your activity in the online community.

As long as you have Crohn’s disease or ulcerative colitis you are eligible to participate; it doesn’t matter how long you’ve had IBD or how bad your disease is. If your IBD is indeterminate, or you are still going through diagnostic tests, you can still participate! And whether or not you’ve had surgery, you are still eligible.

The survey will take approximately 10-15 minutes. Please click the link below to access the survey. Thanks for your invaluable help!

https://ufl.qualtrics.com/SE/?SID=SV_cAqPW1khdSsFuC1

If you have any questions at all, please let me know.

Sincerely,

Dennis Frohlich
University of Florida
dennis.frohlich@ufl.edu

Made it to the top of Rainier!

After months of anticipation, much training and a bit of uncertainty with injuries, I made it to the top of Mt. Rainier on August 1st. Yippee! It was incredible and my mind is still processing how amazing the climb was. After the trip up Rainier, Doug and I traveled around the Pacific Northwest and spent time with family and friends. I have to catch up on a lot of things after being away for so long, but I will write more about the adventure soon. For all those who have written comments or have emailed me, I promise to get back to you. It may just take me a little time. The whirlwind pace of the climb made it a bit hard to get cameras out to shoot photos and video, but we did manage to get some pictures and footage and hope to put together a short film on the experience shortly. Stay tuned!

I made it to the top of Rainier. I can't believe I am standing in the crater of a volcano!
I made it to the top of Mt. Rainier! I can’t believe I am standing in the crater of a volcano.

Will you help by answering a survey?

WEGO Health is a social network of bloggers and tweeters who are actively involved in health online. It’s a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities.

WEGO Health asked me to share a survey with the Crohn’s Disease and Ulcerative Colitis communities to make sure that they get as many patients and caregivers involved as possible. The survey will take about 10 minutes. Will you please help?

Take the survey.

As a thank you for each survey, WEGO Health will make a $1 donation to a charity of my choice.

Thank you for helping!

So honored!

It always feels good to get recognized for something, but it is extra special when an award comes from a peer. These folks know the amazing amount of work and passion that can go into a project because they  devote their time and energy to the similar things. About a month ago, fellow blogger Joyce Lameire nominated me for a Versatile Blogger Award. I am incredibly honored that she thought of me. Joyce has both ulcerative colitis and ankylosing spondylitis (AS). Joyce’s blog, ankysponwhat.com features posts about treatments, managing pain and AS news. Lately Joyce has been writing a series of posts that delve into her history with the disease. For those who don’t know, ankylosing spondylitis is often associated with UC. Though I don’t have AS, I have been learning a lot about the disease through her site and would highly recommend checking it out.

In order to accept a Versatile Blogger Award, the following rules must be followed:

  • Display the award certificate on your website.
  • Announce your win with a post and link to whoever presented you with the award.
  • Present 15 awards to deserving bloggers.
  • Drop them a comment to tip them off after you have linked them in the post.
  • Post 7 interesting things about yourself.

It should be no surprise that most of the blogs I follow are IBD-related. There are so many blogs that I absolutely love but I won’t be able to include them all (the list would go on for pages). Here are are 15 of my favorites and the reasons I find them so special.

  • Full Frontal Ostomy Charis, long before we both had blogs, was the very first person that I reached out to online when I was facing ostomy surgery. She is a positive role model and I love her blog and all she does to spread ostomy and IBD awareness.
  • Blood Poop and Tears This is one of the very first blogs I read when I had IBD and then surgery. I love Jackie’s honest account of her life with IBD.
  • Girls with Guts This website and blog is put together by Charis and Jackie (who author the two blogs above). One of the site’s many features are stories of women who have strongly faced the challenges of IBD. Girls with Guts is a huge source of inspiration for me.
  • Inflamed and Untamed Sarah so often puts the exact things I am feeling into words. She does an amazing job of describing the emotional aspects of having IBD and many times I am brought to tears by her writing because I can relate to it so well.
  • Rollin with Outta Colon Cary is an avid cyclist with an ostomy and his blog posts are an artful blend of thoughts on biking, music, photography and the realities of living with an ostomy and the pain of chronic illness. Cary’s posts are full of depth and insight and really get me thinking.
  • Living Bigger with a Colostomy Paul is a fellow outdoor adventurer and I’m inspired by reading about all the things he does with his ostomy. His life is proof that an ostomy does not have to stop a person from doing the things they love.
  • Run Stronger Everyday Even though my running plans have been sidelined due to hip woes, I love reading Abby’s blog. She has been through ostomy surgery and now has a J-pouch. I am not sure when I will be able to return to running (definitely not before my Rainier climb since I can’t risk getting injured), but her blog helps keep me motivated for the day I once again lace up my shoes for a jog.
  • Living Life and Lovin’ It Megan is a newcomer to the ostomy blogging community. I love how she writes about her ostomy experiences in some posts and then things as diverse as chickens and pitcher plants in others. Life is a beautiful mix of so many things and her blog celebrates that.
  • Amazing Adventures- Ostomy Included I only recently discovered this ostomy-and IBD-related blog and am already hooked. Just reading the author’s story reminded me so much of my own—right down to the post-surgery incision complications that I frustratingly faced after surgery. I love this blogger’s adventurous spirit and thoughtful writing and can’t wait for future posts.
  • Gutless Cyclist The author of this blog has also had some health setbacks recently. Despite this, he stays positive and works hard to get back on his bike. Reading his posts fills me with inspiration.
  • Theflowrylife This blog was only started in November 2012, but is already one of my favorites. I love the author’s focus on mindfulness and enjoying the present moment.
  • Love for Mutant Guts It has been great to see Alyssa’s confidence as an IBD health activist grow through her blog. She always has a kind and encouraging word to say too.
  • A Guy with Crohn’s Jeffrey does a great job of spreading IBD awareness. I enjoy reading his posts on a wide variety of topics including gluten-free cooking. To top it off, Jeffrey recently took part in the WEGO Health Health Activist Writer’s Month Challenge and managed to write a post a day for 30 days. I sometimes have trouble writing a post every couple of weeks, so that is a major accomplishment!
  • Intense intestines When I first stumbled upon Brian’s blog I couldn’t believe it. Here was another outdoor-loving person who had gone through ostomy surgery one day after I had. The organization Brian started, The Intense Intestines Foundation, has grown to become one of the most incredible resources for those with IBD.
  • Squirt’s blog Donna is a fellow nature-loving ostomate with an adventurous spirit and that shines through in her blog. She does so much to spread ostomy awareness. I am pretty sure if Donna lived closer, we would be meeting up to explore forests, streams and fields on a regular basis.

Now for the seven interesting  tidbits about my life:

  • I have way too many hobbies. As if the plethora of outdoor sports I enjoy aren’t enough, I love drawing, painting, printmaking, journaling, sewing, tying fishing flies, storytelling, writing, drumming and playing the guitar. Whew! The upside–I can’t remember a time that I was ever really bored.
Drum circle fun.
Playing my djembe.
  • I can do an awesome squirrel voice. This comes in handy for the above-mentioned storytelling hobby and the many puppet shows I conduct for kids as a park naturalist.

    My squirrel voice was first developed for the puppet on the right, but has since been used while impersonating a variety of rodent characters.
    My squirrel voice was first developed for the puppet on the right, but has since been used while impersonating a variety of rodent characters. (Oh, and I also hand-sewed these three puppets.)
  • Weather fascinates me. Ever since I spotted a twister that came within ½ mile of my house as a child, I have been interested in weather. I have the National Weather Service radar bookmarked on my computer and could watch clouds all day. I was bummed that all my hospital room windows faced east when I was stuck there during my UC and surgery recovery. It drove me crazy to not be able to see the weather coming in from the west.
  • Social media wears me out. Though I enjoy public speaking and teaching, I am a total introvert at heart. I am the person at parties who you see having an in-depth conversation with someone in the corner instead of mingling. In the same way, I love interacting with people one and one through blog comments and emails. However, I definitely fall short in the realm of social media. The pace of Facebook and Twitter is crazy and by the time I process all the information and think of what I want to say, posts are already dead and buried. And I find writing within the 140 character limit of Twitter nearly impossible!
  • I drive a pink scooter. In an effort to keep my carbon footprint as small as possible, I make my 28-mile round-trip commute on my scooter when the weather cooperates (my bike gets 90-95 mpg). With my pink helmet and blond ponytail, I must look like Barbie going down the street because I often get waved to by little girls.
Heading to work on my scooter.
Heading to work on my scooter.
  • I love gummy candy. I try to eat healthy, but I have weakness for gummy bears, octopi, worms or whatever crazy-shaped creations I can find in the candy aisle.
  • I was a really creative kid. When I was a child, my parents set up art studios in the basement for my brothers and I, and stocked them with markers, paints, papers and all sorts of materials. I would spend hours down there drawing and creating art projects. I also used to develop my very own book order forms for my parents to fill out. Once they marked which titles they wanted, I would make little books and write a tale within the pages so that I could fill their order. My brothers and I also used to type up scripts and song sheets for shows and then perform them for our family.
Sitting in my homemade cardboard sleigh during a one of our Christmas productions.
Sitting in the homemade cardboard sleigh during act one of a Christmas production.
Act two involved some singing complete with a microphone. Now if only I actually could have carried a tune!
Act two involved singing in an elf costume (with a cool microphone)! Now if only I could have actually carried a tune.

Happy World Ostomy Day!

Happy World Ostomy Day, everyone! Today I will be celebrating by heading to work and having a wonderfully ordinary day. After all, when I was recovering from surgery, I couldn’t wait to return to my job as a park naturalist. Right after my operation, life revolved around getting used to living with my new stoma. Being back at work allowed me to focus on something else and helped me see that life would indeed feel normal again.  Returning to my job also made me incredibly thankful for my surgery. I remember quietly breaking into tears in my office after leading my first few hikes because I was so happy and grateful to be doing what I loved again.

As the list of things that my ostomy allows me to do again grows, so does my passion for showing what is possible after surgery. I am always excited to help spread the word about this life-saving surgery — not just on this special day, but every day.

So join me in celebrating World Ostomy Day. If you or one you love has an ostomy, help spread the word by sharing your story with someone today. Together we can educate others and end the stigmas!

Spreading ostomy awareness while climbing the Third Flatiron in Boulder, CO in August 2012.