2019 Crohn’s & Colitis Awareness Week

The year isn’t quite over, but since the first week in December is always Crohn’s and Colitis Awareness Week, it feels like a good time to reflect on the previous year and take stock of how well I have achieved my goal of “living well” with Crohn’s disease. Indeed, it was quite a good year… and the pictures are the proof.

Though I have written a few posts over the years marking this topic (like this one from 2015, which marked 20 years since I was diagnosed) and do some sharing on social media, but I always have mixed feelings about it the whole concept of raising a “raising awareness.” It makes a lot of sense to me when the disease in question is preventable or when early detection could change the outcome, so I understand the importance of something like World Aids Day or campaigns that encourage people to get cancer screenings or do self exams. I also know that calling attention to very rare diseases without a lot of treatments available helps raise fundraising dollars. But I wonder what good it does to raise awareness when that awareness raising seems more focused on proving that a disease is particularly terrible, which is often what I see when I look at my social media feed. Take for example, the CCFA’s suggestion for their 7-day photo challenge and the tag #IBDvisible.

I get it. This is all important. Crohn’s disease and other inflammatory bowel diseases can be truly debilitating, they can be a significant financial strain, they affect relationships, and they have effects beyond the physical. I’m glad that more people understand this than did when I was diagnosed in 1995, but I also believe that where you focus your attention energy flows.

So, I choose to focus my attention raising awareness that despite the seriousness of this chronic disease, despite the financial and relationship strain, despite the mental and emotional difficulty of living with it, despite it all… you CAN still live well with it!

What does living well look like?

Obviously the definition of “living well” is different from one person to the next. It also changes over time. There were years when my health was particularly precarious that living well simply meant that I was still keeping in touch with friends and keeping my mind active. But these days that is not enough for me and living well now means that I am physically active, experiencing the world fully, and engaged in meaningful and stimulating work.

In 2019, my life with Crohn’s disease looked like all of this…

I strapped on snow shoes when visiting my parents last winter and hiked all over both the woods and the frozen lake, keeping up with my very fit and active outdoorsman father!

Sharing a vehicle with my husband was getting in the way of my ability to live a life as active as I wanted, so in March I used my share of the proceeds from a family business deal to get myself a brand new 2019 Mini Cooper 4 Door. Here are I am in the dealer parking lot, posing with the car I decided to call Lucky Penny. Yes, she is as fun to drive as you would think!

Here is a picture of me inside Lucky Penny, after completing a particularly invigorating workout at OrangeTheory Fitness (not a sponsored link; I’m just a happy member!). I joined my local studio in January of this year, after completing a Couch To 5K program in 2018 and deciding that I really don’t like running outside much! It was a perfect choice for me and something I recommend all people who are rebuilding their health check out. The group atmosphere is great motivation for me and I like having the workout planned by someone else, but I’ve been able to scale my workout efforts to my energy level for the day.

Being involved in my local community is something that I found difficult when my health was less reliable, but I know how important connection with others is to living well. I also know that an important element of living well is to care for our planet, so I combined both of those this year when I was hired by the City of Alexandria’s Resource Recovery Division to staff the food waste collection station at the weekend farmer’s markets. It isn’t an incredibly physically tasking job, but I do need to be able to move full waste toters around and assist residents as needed. I’m grateful to have the opportunity to put my health and physical ability to good use!

Yep, that’s me! Same lake, more fun in the summer! I grew up in Wisconsin and like many others from that part of the world, waterskiing is in my blood. We visited for a week in July in 2019 and I made it a point to ski as many times as I could. I also celebrated a huge accomplishment for me in that I was able to get up on one ski for the first time (see the video proof here) since before I had surgery in 2007.

When I was at my health rock bottom, I thought getting back to work and excelling professionally was the only way I could prove my worth. I pushed myself so hard in a demanding career that completely depleted me that I had one health crisis after another and had a difficult time breaking that cycle… even after I’d figured out how much changing my diet helped. Today, I still have a demanding career and I still push myself, but now the work that I am doing is meaningful and often times feels more like play! Here is a picture I took of my own image in the computer screen about to jump on a follow-up coaching call with one of my nutrition clients.

Living well for me means being able to travel. This year, in addition to three trips to visit family in the midwest and one trip to Portland, Oregon to attend the Nutritional Therapy Association annual conference, I also spent 8 days in Italy, where I was the chef-in-residence at a women’s wellness retreat in Tuscany. It was a working trip, but I did get to participate in many of the retreat activities, including an excursion to Assisi, which you see in this picture. I also ate very well while I was there and came home feeling healthy and energized!

Isn’t my dog cute? What more can I say about this picture?!

I’m so grateful for her enthusiasm on our walks every day and love being able to take her out on adventures. Here we are in the early autumn of 2019, exploring a park along the Potomac River.  Living well in the Washington, DC area can be challenging, but the many dog-friendly outdoor spaces helps!

As mentioned above, I really hate running outside. But here I am anyway, completing the Veteran’s Day 10K Race last month. My husband – who always has been my #1 cheerleader – signed us up for it as an anniversary gift… and I’ll be honest, I didn’t take it well. My first reaction was to recoil from the race entry receipt he’d put in the card as if it was burning my skin (not exactly the reaction I’m sure he wanted!). Tears quickly sprang to my eyes and I said I don’t WANT to do it! But the truth was clear, I was scared. I didn’t believe I COULD do it. I was scared to try and to fail. But he saw in me what I could not, and gave me just the push I needed to prove to myself that I really do have the life I envisioned when I was at my sickest.

When I was at my sickest, I was experiencing debilitating joint and muscle pain that made even just moving around my own house an excruciating experience. Exercise was out of the question and even short walks with the dog took everything I had. I had fatigue so intense that I would wake up and feel immediately like I needed a nap. My digestion was so taxed that my weight hovered stubbornly in an unhealthy range despite eating 3000+ calories a day. I had inflammation and occult blood loss in my intestine so severe that I needed to have a medi-port placed so that I could keep getting needed iron infusions.

When I was at my sickest, the life you see pictured above was one I could only dream of.

So I did.

Every night, when I practiced yoga nidra before going to sleep, when the teacher gave the prompt to set a samkalpa, an intention of a heartfelt desire, and to invoke all of the senses to imagine it, I dreamed of living well and it looked a lot like this.

It was not easy. First I just pictured myself smiling. Then I imagined being able to walk and bend and change direction. Then I felt myself moving through space, feeling happy, experiencing life. I saw it, I tasted it, I smelled it, I heard it, I said it. And eventually I believed it… and my body started believing it too. Little by little, the pain and inflammation and fatigue started to ease.

Where attention goes, energy flows.

 

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