I have been absent from this blog for a while as I have been going through the hardest time of my life. My family and I lost my father just after the New Year. I haven’t been able to find the words to describe the sadness, so I put off writing about it thinking that maybe it would get easier to write about in time. It hasn’t. In fact, sometimes my brain has barely processed that he has passed away. Things happen during the day and I think, Oh … I need to tell Dad about that and then I remember he is gone.
I am grateful that—along with my brothers and mom—I was able to spend five weeks with my dad at my parents’ home in Washington before he passed away. As difficult as it was, I cherished that time. There were some good moments when we were able to talk about politics and history and some of my dad’s other favorite subjects. However, most of that time he was not very coherent—or at least it was hard to tell if he comprehended what I was saying to him. That didn’t stop me from telling him how much I loved him, or how thankful I was for his loving support, all that he had provided for our family and what a positive influence he had on me.
I still tell him those things today, hoping that somehow he can hear me.
My father wanted to be buried in his home state of Wisconsin, so my family traveled back there for the funeral. During our week there, we spent time visiting many places that were significant to us including our childhood homes, places where our relatives had lived and other favorite sites.
One of my earliest memories as a child was walking with my dad and our dog on the wooded paths and railroad trestle at the Fox River Sanctuary in my hometown. It is interesting that out of the countless memories we make throughout our lives, there are some that contain moments that we later realize are incredibly influential to who we become. Those early nature walks in that special place were of that type.
So on one blustery morning during our time in Wisconsin for the funeral, Doug and I went for a run at the sanctuary and crossed the trestle. It had long been abandoned by the railroad, but other than that it looked exactly how I remembered it. I felt happy to be in the same place where I had once stood as a four-year-old. Back then, my dad would have been around the age I am now, and I wondered what he had been thinking about and dreaming of in those days. Moreover, what had been going on in my young mind? No doubt I soaked up the colors of the leaves and the scents of blooms along the river. Maybe I noticed the sounds of birds. Holding my dad’s hand as we strolled along the railroad tracks, the seeds of my future nature-loving existence were being planted. As I jogged over the trestle in January, I whispered a thank you to him for taking me there long ago.
Those trestle walks were just the beginning of the adventures my dad would take me and my family on. He loved spending time with us and it was a rare weekend growing up when we weren’t visiting a historic site, taking in a local festival or fair, or going on a camping trip. Later, our family bought a small RV and took multi-week summer vacations to national parks and historic sites (and amusement parks too–he loved roller coasters). My dad had a passion for sharing our nation’s natural and cultural heritage with us. Those trips left a lasting imprint on me and made me who I am today. They also influenced my career.
Last week I was preparing an education program in the park system where I now work as a full-time interpretive naturalist. The trails were icy so I was scoping out a route that would be safe for participants to travel on. Even though I had been to the park countless times, every visit seemed to hold something new to discover. On this trip, the frozen lake was covered by a layer of meltwater that reflected the cobalt blue sky. As I took in the breathtaking landscape, I whispered a thank you to my dad for those early experiences that led me to a job I love. Just about every day, I get to help others make meaningful connections to nature and history, just like my dad did for me.
When I was about five years old, my mom and dad bought land, had a house built, and moved the family out to the country so that we could roam the fields and forests instead of the city sidewalks. There my brothers and I happily played on dirt piles, chased grasshoppers, camped in the backyard and picked vegetables in the garden.
Several years ago, I found a book of nature quotes on my dad’s bookshelf that had been published years before my brothers and I were born. In it, my dad had circled a quote by famed naturalist Richard Jeffries. It summed up so well the gifts that my father had had given me over the years.
“If you wish your children to think deep thoughts, to know the holiest emotions, take them to the woods and hills, and give them the freedom of the meadows, the hills purify those who walk upon them.”
Dad, I miss you dearly. I will always think of you when I am in the mountains, meadows and forests. You will travel with me always.
A Litany of Remembrance
In the rising of the sun and in its going down, we remember them. In the blowing of the wind and in the chill of winter, we remember them. In the opening of buds and in the rebirth of spring, we remember them. In the blueness of the sky and in the warmth of summer, we remember them. In the rustling of leaves and in the beauty of autumn, we remember them. In the beginning of the year and when it ends, we remember them. When we are weary and in need of strength, we remember them. When we are lost and sick at heart, we remember them. When we have joys we yearn to share, we remember them. So long as we live, they too shall live, for they are now a part of us, as we remember them.
-Poem by Rabbi Sylvan Kamens and Rabbi Jack Riemer
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.
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.
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.
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.”
Curled up on the couch last week, I felt more relaxed than I had in a very long time. I had just returned from having a post-work drink with Doug and his coworker, had grilled up some burgers for dinner and was now ready to watch a movie. That may not sound like a big deal, but my life had gotten so hectic lately that such a simple thing seemed like an enormous treat.
The movie I chose to watch on Netflix was called The River Why. I read the novel years ago and loved it. Though the film wasn’t great, I still enjoyed it. Watching the characters on the screen, I noticed something. They were never running home to check email and weren’t glued to social media. Instead, the characters were shown reading or fishing in their free time or spending time quietly talking to each other. You know the sort of scenes–the ones where friends are shown sitting on a hillside overlooking a breathtaking view or out in a flower-filled meadow just talking. Nolstalgic? I suppose–but I can actually remember a time in my life not so long ago when moments like that were a reality. Days when I came home from work and Doug and I would take a quiet walk or I would sketch, play guitar or read in the evenings. Moments when I would spontaneously stop by my friend’s house after work to pull weeds in her garden and chat about happenings. Times when I didn’t have to plan dinner dates months in advance.
I want my life to return to that pace.
Recently Doug and I got into an argument when talking about upcoming plans for my birthday. He wanted to do something special with me and I was completely stressed out with a huge to-do list. I asked if we couldn’t postpone the birthday festivities for a future month when my schedule wasn’t so hectic. My suggestion didn’t go over too well with Doug and it shouldn’t have. Seriously? My life felt so busy that I didn’t want to take a couple of hours to celebrate my own birthday? This was a wake-up call that something was out of balance. Where was the Heidi who used to be so laid back and spontaneous?
After much reflection, I came to the conclusion that my transformation into a stressed-out and overwhelmed person occurred when I started Ostomy Outdoors. This wasn’t easy to admit to myself. Keeping this blog is one of the most rewarding things I have ever done. How could a project I love so much have such an adverse affect on my well-being?
I knew when I began blogging that writing posts, answering comments and making videos would would require a time commitment and I was excited to take this on. What I did not anticipate was all the side projects that would come with blogging. Things like being asked to write my story for other sites, providing feedback on IBD blogs, helping with research and all sorts of other requests. These were all such worthwhile things proposed by people and organizations that I greatly admired. Each one was an amazing opportunity to spread awareness and help others so I eagerly said yes to just about every proposal that came my way. It meant so much to me to be able to help so many people.
The problem is, the list of projects I could be involved with is endless. As soon as I wrap one thing up, another comes along. All these activities, even the small ones, require time to successfully carry out; yet time is a limited resource. The number of blog-related projects I have tried to take on is simply not sustainable for me; I am burnt-out, spread thin and exhausted. Also, these projects, combined with my regular blog posts tie me to the computer too much. I want to hear the sounds of birds on the trail, smell freshly baked goods in a cafe, or feel my head resting on my hubby’s shoulder–real tangible experiences that I can wrap my senses around. I don’t want to be fixed to a screen and keyboard living life through my computer. I need to give myself time and permission to step away from the online world sometimes.
I worked incredibly hard over the last couple of months to clear my plate of a huge backlog of projects that I had committed to, and I have no desire to go back for seconds. From now on, when I get asked to be involved in new blog-related ventures, I will be saying no. It isn’t that these projects and causes aren’t absolutely amazing and worthwhile to take part in. I simply must set boundaries for my role as a health activist in order to get my life back in balance. This feels selfish in a way, but it is absolutely necessary for my welfare.
To prepare for this transition, I have been reading a lot of articles about learning how tosay no. One of the main points in many of these pieces is that when you do say no to one opportunity, you are opening up the time to say yes to another. So by saying no to additional blog-related projects, what am I saying yes to?
quiet time with my hubby
visits with family
phone calls to Mom and Dad
running with friends
spontaneous weekend getaways
pitching my tent for a campout
moving over rock
taking aim at a biathlon target
tying and casting flies
hand-writing letters to loved ones
making waffles for breakfast
nature journaling, block printing, and watercolor painting
regular exercise and meditation
playing my guitar and drumming
reading books (I haven’t finished one in three years)
being less burnt-out so I can do a better job at the things I can do to help others
What do these new priorities mean for Ostomy Outdoors? Interestingly the aspects of my blog that I love the most are the ones that I have had the least amount of time to do lately: writing posts, making videos, and helping people who are facing or recovering from ostomy surgery one-on-one through comments and emails. I plan to put a strong focus on these activities. I also remain committed to some of my other related writing projects such as my column in the United Ostomy Associations of America’s The Phoenix magazine. However, I will not be taking on much else. By setting new boundaries I hope to re-immerse myself in the parts of my life that have nothing to do with health activism.
Hopefully soon, my eyes will once again grace the pages of a good novel, my hand will bounce off my djembe, my pen will skirt across paper and maybe, just maybe, I will find myself sitting in a gorgeous meadow immersed in a meaningful conversation with a friend.
A few weeks ago, Doug and I climbed an eight-pitch rock formation in Rocky Mountain National Park called Spearhead. It was a great adventure and my first big backcountry rock climb since surgery. All went well but as we summited we noticed some huge thunderheads building above us. We descended and got safely back to camp just as the lightning, hail and rain began. We packed out our soggy gear and hiked the six miles back to the trailhead in a light rain. Little did we know at the time, those sprinkles were the start of a weather system that would last five days and flood parts of the Front Range of Colorado. Sections of the roads we traveled on that evening would be completely wiped out, and homes and businesses that we passed by would be damaged or destroyed.
Doug and I walked around our own neighborhood during the time of heaviest precipitation and watched small creek beds fill and and overflow their banks and turn into swift rivers. Our immediate area was spared the worst of the rains and did not sustain any damage except for some flooded trails and parks. As we watched the disaster unfold only 20 miles to the north and learned of the immense destruction there, we wondered what we could do to help. We put our names on a volunteer list for a large organization, but were told that it would be a month before needs would be completely assessed and our applications processed.
A week after the flood Doug and I made a trip up to Boulder, one of the severely impacted towns, to go to a premiere of a climbing film. It was crazy to see how much flood recovery had already happened. Major roads had been cleared, a lot of businesses had reopened and things looked normal on the surface. However, before the presentation, a group of local climbers got up on stage and talked about all the work that still needed to be done. Right after the flood, these individuals saw that their neighbors were in need and simply showed up with shovels and buckets to dig out impacted homes. Soon they had a name: The Mudslingers. The newly formed community-based volunteer group invited everyone to join in and help make a difference. It was easy—all you had to do was show up at their makeshift office in downtown Boulder and they would assign you to a project.
Word of the Mudslingers spread quickly and soon it became a large group made up of people of all different backgrounds—not just climbers. When we were finally available to volunteer this past weekend, we were afraid that there wouldn’t be that many projects left to help with. After all, it had already been three weeks since the flood.
Of course I thought about my ostomy. Would the lifting be too heavy? What would I do with my full pouches out at a flood site with no restrooms for miles? I hadn’t let my ostomy stop me from anything before and I sure wasn’t going to let it hinder me from volunteering. I would wear my hernia prevention belt and ask for help if a task involved heavy lifting. Certainly I could shovel dirt and that was what was most needed. As far as dealing with my waste, I would just do the same thing I did on a mountain: find a somewhat private spot, swap out a closed-end pouch and pack it out.
We showed up at 8:30 a.m. on Sunday and there were about 20 people gathering on the sidewalk outside the office. After signing liability waivers, we jumped in a car with a couple other volunteers and began driving 30 minutes to the site. On the way there, it was hard to even tell there had been a flood. It was a gorgeous day and cows were grazing in farm fields as we passed. Bicyclists were out in droves enjoying the beautiful weather. I kept watching for flood damage, but I couldn’t really see anything save for some puddles in the fields and some grass that looked like it had been matted down by water. I was starting to wonder what kind of work we would be doing. It seemed like the area wasn’t that heavily impacted. I would soon discover that I couldn’t have been more wrong.
When we got within 10 minutes from our destination, I started to see some low-lying areas where it looked like a lot of mud had been cleaned up from yards and piled up. However, it wasn’t until we came face to face with a “road closed” sign that I had the first inkling of the sheer destruction I was about to witness. The house we would be working on was just beyond this sign, so we drove around it. As we turned into the driveway, we noticed that the main road extended only another 50 feet before ending in an abrupt cliff. It had been completely washed out by the flood. “Road gone” may have been more appropriate wording for the sign.
When we got to the property, I stepped out of the car and looked around in disbelief. The damage was so much worse than I had imagined and my mind had a hard time making sense of the disorder before me. There was a children’s slide up in the branches of a cottonwood and a huge construction dumpster tipped on its side and pushed up against a tree like an empty cardboard box. Across the river an RV sat marooned in silt while a garage had been completely moved off its foundation and stuffed with branches from the force of the water. Jumbled tree limbs, house parts and other random items formed debris piles everywhere. On the property, there were enormous mounds of destroyed belongings: muddy shoes, mattresses, appliances, luggage, packages of unopened chips, a child’s toy, and a crushed TV were just a few of the objects I saw stacked up. Some of the items belonged to the person who lived in the house but many of the things had traveled there from miles upstream. The house had already been dug out by an earlier group of volunteers, but there was still two to three feet of wet silt covering the floor of a barn and a large portion of the yard.
After looking around for a few minutes, we were briefed on the project. Our main objective in the morning would be to clear large debris out of the mud in the yard so that a tractor could come through and scoop up the remaining dirt. There was such an overwhelming amount of deposited silt that it was hard to know where to take the first scoop. We all just started to dig in. Soon we were finding all sorts of things including a bike, golf clubs, a dog crate, fishing poles, a propeller and even a toilet. The most frustrating thing was that a huge number of window frames had washed down from somewhere up stream and were layered in the silt like sheets of paper. We would dig out one only to find another right underneath. We got so excited when we were able to remove one with the panes still intact, but most were broken and trying to remove all the glass from the mud was impossible. Digging through the mud, it was hard not to get emotional. I knew that every object we found contained a story of someone who had been impacted by the disaster.
By lunch we had made some amazing progress. As we sat down to eat, the homeowner, tenant and a neighbor that was also helping with the cleanup came over and told us stories about the flood and its aftermath. The 70-something homeowner now lived in town but rented out the property. She had bought the place in the 1970s and talked about the home’s rich history and all the memories of the time she had lived there. Due to the fact that the home was on a creek that was usually a small trickle, she did not have flood insurance. The homeowner had talked about wanting to give up once she saw the damage because it had been so overwhelming.
The renter who lived in the house had been keeping a close eye on the rising creek only to have a drainage ditch behind the house unexpectedly overflow and quickly inundate the house. He evacuated before things got really bad and thought he would come back to some wet carpeting the next day. Instead he found his house full of deep mud with all his belongings on the first floor and in the barn destroyed. This had been his home for 10 years and he talked about how it was the only place his grandchildren had ever known. It was clear that all the individuals loved this place and that their loss was huge. I couldn’t have imagined going through what they had, and my heart ached for them.
After lunch the crew divided into two teams. One went to dig out the three feet of mud in the barn. The rest of us donned masks and headed into the house to remove insulation and drywall. An earlier group of volunteers had already taken the walls out up to the high water mark soon after the flood, but it was determined that the rest of the drywall up to the ceiling should be taken out. As I was ripping out the walls with the rest of the team, I got really sad. Just a few weeks ago, these were cozy rooms full of someone’s treasured belongings.
As we finished up in the house, I noticed that the walls along the staircase to the second floor were intact and covered with framed family photos. I held my hand in front of my eyes so that I could block out the area we had gutted and just focus on that one little space untouched by the flood. The comfort and tranquility of the upper stairwell stood out against the piles of broken drywall, dirt and bare studs that had become the barren first floor. I closed my eyes and pictured the lower level becoming a comfy home again. I imagined colorful walls and rugs, artwork on the fridge, comfy furniture and laughter filling the now empty space. Though it would take some time to get there, I knew those things would be a reality thanks to all those who had volunteered.
The day came to a close and I wasn’t the only one full of hope. At the end of the day the man who lived in the house smiled as he talked with me about the how the house would be even better than before once repaired. Walking back to the car, tears welled up when I overheard the homeowner talking on the phone about how overjoyed she was at all the progress that had been made during the day. I looked around and things still seemed so daunting. However, in her eyes the improvement was huge—the property she loved was starting to be recognizable again. As we all got in our cars to leave, she invited us to return to see the place once it was rebuilt.
I know from going through serous illness and ostomy surgery how important it is to have hope. I also know that sometimes it gets lost and you need others to help you find it. In this case hope was well hidden in many feet of thick mud and was particularly hard to locate. Still, it had no chance of remaining concealed with 20 hearty, shovel-wielding volunteers working tirelessly at the site. With each piece of drywall torn out and each bucket of dirt removed, hope was unearthed and the despair of these individuals began to turn into optimism. Words can’t describe how amazing it felt to be there for someone in need and to be part of that transformation.
Last Tuesday evening, I left work in a gorgeous swirl of falling snow but promptly got stuck in standstill traffic due to slippery road conditions. I half-thought of exiting the freeway and heading home, but the destination was too important and I knew that getting there would soon melt away any stress that had accumulated on the drive. In fact, it was almost guaranteed that I would leave the event in a good mood. I always do. So where was I heading that had me filled with such eager anticipation?
The fourth Tuesday of every month is my Ostomy Association of Metro Denver meeting. I started going to these meetings as soon as I was healed enough after surgery to get to them and quickly discovered how valuable they were. When you have a condition that is hard to talk about with most people, there is a feeling of instant comfort that comes from being surrounded by others who immediately understand what you are going through. A place where it is okay to talk about normally taboo subjects such as gas, rectums and bowel movements. Now that I have been attending the meetings for almost two years, I cannot imagine not having this support system in my life. I absolutely love talking to those who are facing or recovering from surgery and doing what I can to offer encouragement. I head home from every gathering wishing I had more time to talk to everyone and eager for next month’s meeting to arrive.
One thing that I hear many young people on IBD and ostomy internet forums say is how they often walk into such meetings and feel that they are the only one in their age group there. Many times these people don’t come back for this reason, and I think it is really unfortunate. Regardless of age, everyone can relate to the overwhelming emotions that come with ostomy surgery. Though different for each person, we all have stories of difficult times, fears we are facing, successes we are celebrating and hopes and dreams for our lives beyond illness. Coming together to share our experiences and thoughts on these things can offer profound opportunities for healing. I love the conversations I have at the meetings and learn something from every single person there whether they are 25 or 70 years old.
And guess what? If you wish that there were more people at the meetings your age– stick around. The next time someone else your age is nervously walking down the hall towards the meeting room and peeks in, they will see you there and feel less apprehensive. If that person chooses to also come back next time, it has a ripple effect and soon the group becomes more diverse. Make the meetings be what you want them to be by participating and returning for the next one.
If you don’t have access to a local support group to meet people in person, there are many groups to join on the internet. I wrote a post a while back about the importance of reaching out to others online. One of my biggest twists of luck when I was in the hospital and facing the possibility ostomy surgery was that my room had a good internet connection. Whenever my favorite nurse would see me typing away on my computer at an intense pace, she would always remind of how fortunate I was to be in that room because many of the others on the floor had poor Wi-Fi signals. I don’t know what I would have done without my computer. It became a lifeline from my isolated hospital room and allowed me to meet others who had gone through surgery and gone on to lead active lives.
Because of my own experience in reaching out for help when I was sick, it is a huge priority of mine to try to answer every single comment and email I receive on this site. Sometimes it takes me a little while due to a busy schedule, but you will hear from me if you write. Last fall, an email appeared in my box from another local adventurous ostomate: Lewis Benedict. That initial contact led to other opportunities to meet up including a recent hike of Twin Sisters Peaks in Rocky Mountain National Park. Lewis is now working on his own ostomy awareness website, ostomatevillage.com, and was even on cover of The Phoenix magazine this quarter! I am so proud of his accomplishments and look forward to many future adventures with Lewis and his wife, Tara.
I am thankful everyday that I have met so many amazing people through my ostomy association meetings, OstomyOutdoors.com, and other websites and social media. You all inspire me to no end and help keep me motivated when my own life presents challenges.
I am going to end this post with a video of the hike with Lewis mentioned above. I hope it provides some inspiration to get out there and meet other people with ostomies. If you are feeling alone while facing or recovering from surgery, or if you just want to meet other people who have been through similar things, know that there is a strong ostomy community out there. You just have to reach out.
Wow! That looks like fun I thought as I gazed up at The Ridge at Loveland ski area on Sunday and saw three skiers floating down an area of untracked powder. If only we had time to get up there. Doug and I were planning on leaving the ski area early to avoid the nightmare traffic jams that always happen on ski weekends when everyone is trying to get back home to Colorado’s Front Range. Getting to the area where these people had been skiing involved signing a waiver down at the lift ticket office and then riding the new Loveland Ridge Cat. We figured it would take at least an hour to get our pass and then ride all the necessary lifts to get to the area where the snowcat picked skiers up. Not to mention that the snowcat stopped operating at 2:30 p.m. We would really have to rush to catch the last ride.
That seemed like a lot to do for one run, and I almost shrugged it off thinking it wasn’t worth the hassle. Anyway, we had passes to the ski area and there was always next time, right?
As I sat there in the snow looking up at the snowy ridge, I had this horrible nagging feeling that maybe there wouldn’t be anext time to do that run. I hate having depressing thoughts like that, and I really do try to stay positive as much as I can. However, sometimes the downer feelings sneak in and this was one of those times.
This Thursday, I am going in for an MRI of my left hip. I have been experiencing a rapid worsening of pain in the joint. What started out as a dull ache in the beginning of January has now changed to a sharp pain whenever I lift my leg in a certain position. The joint is starting to hurt when I walk and it feels alarmingly like the avascular necrosis (AVN) in my shoulder. Though I am definitely staying hopeful, I am also scared of what the MRI might reveal. If the results came back showing AVN, I am pretty sure snowboarding black diamond runs on The Ridge would be out of the question.
I suddenly had this incredible drive to get up there and to the run right away. There was no time to waste! Who cared about getting stuck in traffic. Doug and I raced down the mountain, got our passes for the Ridge Cat and made our way up the lifts to the loading zone for the vehicle.
This isn’t the first time since being diagnosed with AVN that I have had these sorts of thoughts. Last Friday I went to a two-hour Zumba dance party at my gym. Doing salsa moves, jumping around and swinging my hips was so much fun, and I smiled the entire time. Still, the dreaded thought once again entered my head: Would this be the last time I would get to dance so hard? Just in case, I closed my eyes and focused on the lovely sensation of my body moving to the music. Don’t ever forget how amazing this is I thought.
A couple of weeks ago I went to the rock climbing gym. My orthopedic surgeon had said it was okay to still climb as long as I followed some restrictions, avoided doing anything that elicited pain, and didn’t push too hard. I started tentatively–not knowing how my shoulder would handle things. Soon I realized that if I only climbed with my arms in front of me and did not do any moves where I was reaching far out to the side or back, I was fine. On the last climb of the day, I paid close attention to how strong and powerful I felt when to reaching up for a hold and making my way to the next one. Would there be a time in the near future when I couldn’t remember what that felt like due to decreased mobility?
On New Year’s Eve, I went ice skating with my brother-in-law’s family. As everyone went back to the warming room to take off their skates, I stayed behind and did a few laps. Once again I closed my eyes and tuned into the feeling of my legs gliding over the ice hoping to commit it to memory in the event that I wouldn’t be able to do it again.
As I sat on The Ridge looking out at the gorgeous snow-capped peaks in the distance, I thought back to the climbing, ice skating and zumba instances and once again wondered if this was the last time I would be clicking my boots into my bindings and flying down a black diamond run. Sure, these thoughts were rather melancholy and I wished I could have been thinking about happier things. However, there was one silver lining to having these feelings: they made me want to soak up the moment and savor every bit of joy that was found there.
I tilted my board towards the fall line and began to slide down the slope. As I picked up speed, I listened to the wind rush past my ears and felt snow crystals touch my smiling cheeks. I felt my body turn into this amazingly coordinated machine and bend and sway with the subtle nuances of the terrain. With years of practice, it knew the exact pressure I needed to exert on the board to make it arc gracefully through the powder. I felt the sensations in my feet as I rolled from my heel-side edge to toe-side and heard the noise of my board slicing its way through the snow. I felt agile, giggly and content and wished that slope could have gone on for at least ten more miles.
I don’t know what Thursday’s test will reveal. Maybe I will have AVN in my hip. Perhaps the pain is just from a tweaked tendon. Whatever the results–that was one heck of a snowboard ride! Perhaps we all need to delight in those amazing moments as if there will be no next time.
I had been planning all week to write a post today about a great product I tried out, but my mind isn’t in it. Yesterday, I found out some devastating news. One of our friends, who happens to be my age, is battling brain cancer. In a matter of 24 hours, he went from thinking he just wasn’t feeling well to being rushed off to emergency surgery and getting the shocking diagnosis.
After finding this out, Doug and I drove to a quiet place to talk and reflect on it all. We cried for the unimaginable fear and uncertainty my friend and his wife and young daughter are facing right now. We reflected on how strong our friends are and how much we love and care about them. Doug and I talked about our own love and life together, knowing full well that what is happening to our friends can happen to anyone. There are simply no guarantees. I spent last night in a strange swirl of vivid dreams featuring my friend and his family, doctors, and my own family. I woke up knowing that my mind is going to be struggling with all of this for a long, long time. I am sad, angry at the unfairness of life and hopeful that my friend will recover.
It is strange how life seems to “package” experiences sometimes. I have been thinking so much about uncertainty lately due to my own health issues (which now seem like a minor inconvenience compared to what my friend is going through). I have been thinking about how necessary it is to live in the moment and take things day by day. Last week, my employer brought in an amazing speaker at one of our annual staff meetings. He talked about leading an authentic life and the things that make us happy. I had been reflecting a lot on the message of that talk since hearing it—trying to figure out how his words fit into my own experiences and what they meant to me. It just became more clear. One of his key points was how important relationships and people are in our lives. More and more I am coming to the realization, that for me at least, life isn’t about getting off to exotic locales, or climbing this peak, or hiking that trail. Sure those things are fun, but when it comes down to it, the things that give me the most joy in life are spending time with those I love and helping other people in the ways I am able. I feel that I am in the beginning stages of shifting my life to better reflect these priorities.
So give those you love a big hug today. Call that friend. Write that letter. Help out another person. And if you are willing, please say a prayer for my friend and his family.
Ouch! It has been an achy start to the New Year for me. No, not because of avascular necrosis (AVN), but because I went sledding yesterday. Doug and I are up in Wyoming visiting his brother and family for the New Year holiday. Even though there is not much snow, we took our sleds out to the local hill and tried to make the best of it. On my second trip down the hill, I spun out of control and hit a rock with my shoulder and twisted my back. Fortunately it wasn’t my bad shoulder. After taking a little break, we all found a better hill and spent the afternoon building jumps and zooming down the slope. I am sure I could have found a more gentle activity, but I hadn’t been sledding in years and it was so fun. And the doctor did say I shouldn’t sit on the couch waiting for things to get worse, right? I hardly thought about AVN all day and that was a blessing.
In between fun activities up in Wyoming, I had some time to look back and reflect on 2012. Other than the bad news at the end of the year, 2012 was simply amazing. It was the first year I really got into the swing of things with my ostomy. Having one now feel so routine that I barely even think about it most of the time. I also thought about the goals I had set for this past year. I was successful in reaching some of them and was unable to attain others. Here is a summary of those goals:
I want to do a better job of keeping in touch with my friends and family.
I worked hard on this one, but there is always room for improvement. Having a more introverted personality, I am not much of a phone-talker. In keeping with my love of writing, I usually prefer to email and write long letters to those closest to me, but when I do call my family and friends, I always feel so uplifted. I need to add more phone calls into 2013.
I want to continue sharing my thoughts on this site.
When I started this blog in the spring of 2011, I had no idea how large a part of my life it would become. The comments and emails I get from everyone mean so much to me. You are all so inspirational! I also could not foresee how important this blog is to my own emotional health. Writing here helps me process the events in my journey with IBD, my ostomy and now AVN.
I want to get back into working on art.
This is an area where I fell short. I LOVE doing art, yet there was seldom time this year to squeeze it in between work, my outdoor and fitness endeavors and blogging. On the bright side, I did write and sketch in my nature journal quite a bit this year. Seeing that this is my favorite activity of all my art-related pastimes, I am super psyched that I was at least able to do this.
I want to go on a climbing road trip.
Doug and I did go on a two-week-long rock climbing trip, and it was the highlight of my year. I have trouble finding the words to describe how amazing it was to be out on the rock again with Doug day after day. Memories of that trip are going to fuel me through any hard times that lie ahead with AVN.
I want to run in the Crohn’s and Colitis Foundation of America’s Team Challenge Half Marathon next December.
When I developed hip pain in the spring, I took this goal off my list. I didn’t feel that my body was up for it. Though this was very disappointing, I was happy to follow the Team Challenge adventures of several of my fellow bloggers. To all of those who participated this year: Good job! I loved reading about your Team Challenge successes.
So what is on the goal list for this year?
I have only one: to try to live in the moment as much as possible each day. I know goals are supposed to be more specific than this, but being in the moment is one of my biggest challenges. I am a person who has always planned for the future and worked hard to achieve the things I longed for in life. It seemed reasonable that if I did a and b it would at least somewhat lead to c. Barring a few surmountable obstacles, life felt like it was in my control. Lately, things feel a little different. With a chronic health condition, there are so many more variables involved. It can really make it hard to visualize the future.
In light of this, I decided that the perfect goal for the upcoming year is to focus on the present. There are so many beautiful moments in each and every day. In fact, this trip to Wyoming has been full of them:
Sitting down yesterday afternoon to write stories with Doug and his brother and then hearing my niece read them out loud, carefully sounding out each new word.
Taking a nap and having a contentedly purring cat curled up next to my chest.
Flying over sledding jumps and giggling like a little kid.
Dancing with my niece in the kitchen to Katy Perry tunes.
So here is to a great 2013! I may not know what the year will bring but I do know that by focusing on the present, I won’t let any of the joy it holds slip by unnoticed.
Happy holidays everyone! I hope that you are having a joyous season and are looking forward to the New Year.
After a rough week, some holiday fun is exactly what I needed. I had several days off from work, and got out to do some active things to get my mind off my recent avascular necrosis (AVN) diagnosis. On Saturday, I did a Rainier training hike up Bear Peak in Boulder, CO, with Doug and his Dad. The hike gained over 2,000 feet of elevation in roughly 3 miles and provided a great workout. I found that my pack did not bug my shoulder as long as I tightened the hip belt enough so that the weight was carried mostly on my hips (thank goodness for a great stoma placement that sits below my pack’s waist-belt). I usually use two hiking poles, but skipped using the left-hand one so that shoulder wouldn’t have to work too hard.
The next day I went to the gym for some Zumba (minus most of the arm motions) and then did a leg workout on the weight machines. On Christmas Eve Doug and I spent a little time up in Boulder where we enjoyed lunch at an Italian restaurant. When we got home, I baked gluten-free cookies in various fun shapes including trout, dinosaurs, and Christmas trees. Next day, on Christmas, we met Doug’s parents at Loveland Ski Area, and I also called my parents in Washington to wish them happy holidays from the lodge. It was a bluebird day on the slopes, and the fresh overnight snowfall made for some awesome boarding. I was concerned that pushing myself up into a standing position on my board after falling or sitting would hurt my shoulder, but it felt okay. My body is a little sore today, but that is to be expected as it was my first day of snowboarding this season.
When I was recovering from ostomy surgery and was dealing with grief and anxiety, I found that keeping busy and getting out to do things with my family and friends helped me feel better. I am finding the same thing is true as I deal with the uncertainty of a new condition.
That said, I have also found that the anxiety levels that have come with my diagnosis of avascular necrosis have felt 100 times worse than what I experienced with ulcerative colitits and my ostomy. I think this is due to several things. First, other than anti-inflammatory meds for pain and physical therapy to help maintain range of motion, there aren’t really any treatments to pursue at this time to halt the progress of my specific case of AVN. From my previous life experiences, when I had an injury or illness, there were always steps to be taken to try to heal the condition and help things improve. It feels very new and foreign to me to have a condition that likely won’t heal and is degenerative.
The stats also aren’t as promising with AVN as they were with my ostomy. Before my ileostomy surgery, I had heard that over 90% of people who had the operation for UC were happy with the results. (I certainly am!) Though there hasn’t been much research on steroid-induced shoulder AVN, I did find a few prognosis statistics in online medical textbooks and journals:
55% of those with humeral-head AVN from steroids get it in both shoulders
76% of those with shoulder AVN also get it in the hips (and 2/3 of that 76% get it bilaterally)
90% of those with AVN in the shoulder due to steroids eventually have it show up in another joint
Third, I am having trouble finding hopeful tales out there of people who have had steroid-induced AVN and went on to lead athletic lives. If you have had AVN related to prednisone and went on to climb, snowboard, backpack, etc., or know someone who has, please email me! When I was getting ready for my ostomy surgery, though there were horror stories out there, I was able to find at least some websites related to the athletic things people were still able to do without their colons. I am trying to find such inspiration for AVN.
Recently, I realized that I needed to get some help to deal with my heightened level of anxiety that came with the recent diagnosis. I couldn’t concentrate on anything, and I was a tearful, scared mess. After my fourth sleepless night in a row, I tried to lift a glass and found I was shaking so badly from anxiety that the water was practically sloshing out over the sides. I sat the glass down, and immediately emailed my primary care doctor. I must have reached her at a good time, because within two minutes my phone rang. We talked for about 20 minutes about the current turn of events and the anxiety. She made me feel so much better and told me that I had dealt with UC and my ostomy so well, but that this was likely just one thing too many for my mind to deal with. After our conversation, I decided to give some medication a try. She also recommended combining the drugs with counseling and meditation, so I have an appointment with a counselor in January and am taking a refresher course for mindfulness meditation in a couple of weeks.
I have always been very thankful that anti-depressant and anxiety medications are available. I know many people who have been helped with these drugs. However, this was my first experience taking them and, just like with my ostomy surgery, I found myself wrestling with stigmas. In my circles especially, where my friends and I are into holistic treatments and solving things through diet and exercise, I really had to fight to not judge myself for needing to take this medication and for being unable to solve my problems in a more natural way. But I also knew I was miserable and that the path to wellness isn’t always so simple. It is important to use all tools available. I am hoping that counseling, medication, meditation, exercise, physical therapy and the support of my family and friends will form the perfect combination to get me through this.
With that said, I promise that I will get back to writing about more things ostomy soon. Before finding out about the AVN, I was working on a post about some great ostomy wraps. Stay tuned for that and my continued Rainier-training adventures.