Living and Thriving with EDS: The Journey of an Unstoppable Fighter

Unraveling the Mystery of My Health

In 2020, I was introduced to a hereditary disease I had never heard of before. My primary care physician suggested I might have Ehlers Danlos Syndrome (EDS) of hypermobile type. The revelation was alarming and came during an already tumultuous year. I had recently lost a loved one unexpectedly and was dealing with the stress of assisting my aging grandmother transition to assisted living, all amid the COVID-19 pandemic. What follows is my story, revealing the experiences that have led me to not just survive, but thrive with EDS. While there are many more intricate details to my story, I hope that what I am about to share brings a renewed sense of hope and optimism to those facing the challenges of EDS, whether personally or through a loved one.

The Wake-Up Call

At the time of hearing this news, I had recently lost a loved one unexpectedly and was traveling 3hrs one way on the weekends to help my grandma as she was needing to transition from independent to assisted living but hadn't yet done so... all during COVID lockdown. I was also overweight, a mere 5'5" coming it at 200lbs.  Prior to the pandemic, I was on the road all the time living the glorious life of a consultant. I was eating all the yummy foods and drinking all the post work beverages with clients and colleagues. It was an unhealthy lifestyle. Pair that with being suddenly stricken by the grief of losing someone you love. With my physical health deteriorating, my emotional health was also being challenged with the sudden life changes.  Grief is a son of a bleep, especially going it alone in a pandemic.  I felt empty, couldn't eat, couldn't sleep and quite frankly, ready to give up. 

One of the most impactful leadership trainings I have ever attended was Brian Rabon's Certified Agile Leader (CAL) training when he and his team were first crafting the curriculum before there was even a part 2 to the CAL. Something I learned in that training was ringing in my ear... the importance of a leader to be "fit" to lead. Fitness of your brain and body are crucial in leadership.  If you are unable to keep yourself fit, it will be even that much harder to keep your organization fit. I decided I needed to use this new diagnosis and grief energy in a positive way, I couldn't give up.  That is not the woman my father raised.  I needed to be healthy enough to take care of my grandma and eventually build that family I always dreamed of. 

The Power Zone Challenge

A few years prior to the pandemic, I bought a Peloton.  Every time I rode it, I would CRAVE CARBS!  So I didn't ride it as much because it was leading to more weight gain for me, because I was making poor choices about how to fuel my body.  Leaning into what I have learned over the years and what organizations have paid a lot of money to learn from me... it was time to create an outcomes base plan for myself.  Peloton has this program called Power Zone Training lead by Matt Wilpers (totally have a virtual crush, this man is an excellent virtual coach).  The purpose of the program is to work out in your fitness zone so each workout, while the same for everyone, is lead by what power zone you are expected to be within a given cadence target range. The output target for everyone (cadence + resistance) is relative to your power zone.  This was EXACTLY what I was looking for, metrics to track my performance relative to my performance.  So I dove in.  It wasn't pretty.  If you have ever seen the show on Netflix called 'Dead to Me' and you see the main character Jen on her indoor stationary bike sobbing... it looked a lot like that, especially some of the Emma Lovewell rides.  Those moments were so healing to just get it out.  One of my very favorite people in life and amazing friend BJ Miller gave me some advice and those words still echo today:  "The only way out is through".  I became obsessed with getting through it and each ride made me feel a little more me again. 

The Power Zone Training also came with an online community option. I felt like that would be a great thing to join given the isolation of the pandemic and initially joined a 3 ride per week competition with the PowerZone Pack! This group is absolutely AMAZING! Angie VerBeck and all the volunteers have created a wonderful online community that support each other on their fitness journey and makes it fun along the way! The way it worked for that challenge was 3 rides were the base target for every week and you could do extra rides for extra credit. Each challenge is a little different but ultimately, I always challenged myself to do every extra credit ride and then more on top of that.  When the challenge was over, I decided to go all in and do the 5 ride per week challenge next, which really meant ~8 rides per week and I always chose the longest ride options if possible.  At one point, I had completed every 90 minute ride option they had available. The results speak for themselves.  My FTP had soured and my weight had plummeted.

The Aftermath of the Challenge

I killed that challenge. I did so good that the leaders of the challenge group asked me to come back and lead the group with them. I didn't feel good though. I felt like I gave all of me and I had nothing left. I still wasn't eating enough, I still was grieving and it had become even harder to do anything. It was hard to clean, it was hard to drive, it was hard to sit, it was hard to walk. My body was weak AF. I couldn't do the next challenge and I haven't returned to a Power Zone Challenge since. This is not because of the challenge itself, it's because I still didn't understand how to manage my EDS and messed up my hips doing all the rides with my overly flexible joints. My doctor had me start physical therapy for chronic pain as the solution. This physical therapy was different than what I've experienced in the past. I was working 1x1 with a physical therapist (who didn't have any other patients overlapping, just me) to learn how to move properly again. It was like my brain didn't know what do do with my body anymore. I had a wonderful physical therapist who helped me but I still had so many issues when physical therapy was over. Everything was still so hard to do. I was still trying to keep up habits of moving with peloton workouts (still not realizing how it's messing me up) but I felt like I wasn't making progress on my ability to perform my activities of daily life well, such as cleaning and walking my dog and dealing with all the stuff going on with my grandma.  

The Search for Better Care

I started investigating new cities that might provide a better environment for me to get access to more medical professionals with EDS and hypermobility specialization while also having a start-up & tech community vibe.  I was looking for a place where I could be outdoors more often so the opportunity to be active was more available.  While Florida might be great for a few months when it's winter everywhere else, the remainder of the months are wet.  Even if it's not raining, it's so humid, you aren't going to be dry or comfortable sweating in all that stickiness.  And it's hot.  Also hurricanes! After much research, I was deciding between Austin, TX (a place I had been many times) and Denver, CO (a place I had never been).  Both had fun outdoors opportunities, better outdoor environment than FL with lower chance of hurricanes, startup & tech community, and access to more medical professionals.  I had the opportunity to finally visit Colorado and fell in love with Arvada! My family had fully taken over care of my grandmother, giving me the freedom to take care of myself.  A few months later I moved, landing in CO on New Years 2022.  At the time, it felt like this move was going to save my life and to this day, I strongly believe it has. 

The Colorado Experience

I know that some of you who are reading this are probably shocked hearing what was going on in my life during these times. I was working well over 40+ hours a week and absolutely did my best to show up bright eyed and bushy tailed. This is something that I think us women struggle with wayyyy more than men. Why do we always feel like we have to be everything to everyone all at once? I couldn't imagine going through all of this and having to raise a child at the same time. You'll be happy to know that I quickly found a great medical team in Colorado. While under the care of SCL Health (now Intermountain Health), I worked with a spine specialist and picked back up on physical therapy because I was still very weak and at this point down to 120lbs.  I also found primary care physician Dr. Jodi Turner who confirmed my EDS diagnosis.

My body was getting weaker. It was becoming harder and harder to get the calories I needed every day. While I was improving with physical therapy the road felt very much like 2 steps forward and 10 steps back. Everytime I would make progress, I'd have a setback. About 6 months into care is when my spine specialist presented the option of disability to me. At 38, being presented with a path of disability really lit a fire under me. It pissed me off to be honest. It made me so mad that she even presented it so me. How did I get here? I was an athlete and I still saw myself as an athlete in the future. I worked even harder in physical therapy and completely cut out the things that were causing issues (yoga for instance) and the steps backwards were becoming less of a jump backwards. Once I was strong enough, my physical therapist helped me transition into a personal training gym.

I was very fearful of this transition. I didn't feel ready to be honest and I have worked with personal trainers in the past and have been injured.  My range of motion is crazy flexible and I don't know when I should not go beyond my boundaries and even what those boundaries are. I am not like everyone else. This is why I can no longer do yoga... I go too far and become super unstable. I lose my proprioception when that happens and there goes my ability to stabilize my joints. When it's your spine, that's really scary and not easy to figure out how to fix.

Lessons Learned from a Life with EDS

Working with SCL health, we were focused mostly on my SI joint.  I can tell you, I believe my hips have been 'off' all my life. If my parents and my doctors had known I had EDS, surely there are some things we would have done differently. The first I'd like to think would be to clearly define what I'm allowed to do with my body, for my own safety. I used to sit in splits and backbends for long periods of time. I would do flips and land hard in splits. As a kid, you may look fine but your body is still developing and when you have EDS your collagen is different, and much softer. I don't think my hips ever set correctly and because of it and I work on this issue every day of my life now. If I could go back, I'd do less "carnival" tricks or eliminate them completely until I could prove proper recruitment of the correct muscles to stabilize in those positions safely. The other thing that ails me today is my right shoulder. If I had known I had EDS, I would not have been a softball pitcher. I still would have played softball though. I would throw hundreds of pitches a day, because I wanted to be great. My body is not setup for success to do that. The repetitive motion of swinging your arm at high velocity without having proper muscle recruitment is why I believe my shoulder feel like it is always falling out of its socket all the time (until recently anyway) and why I have a mind muscle disconnection on my right side of my back sometimes.

The Transition to Personal Training

As we age, I don't think we have to accept that we can't be physically fit and be as active as we were in our younger years. We just need the tools to help us get there. At the end of 2022 I met Colby Knepp in a coffee shop in Arvada. He was promoting his business, Olde Town Athlete (OTA).  He explained that he takes a personalized approach to personal training. At this point, I was nearing the end of my physical therapy and knew I needed a plan for next steps. I talked with my physical therapist and she was open to coordinating a transition of care to Colby (as was he) and would give me feedback if she thought it was safe to proceed.  There is nothing wrong with your typical big-box gym trainer but that was not going to cut it for my situation. EDS is still a relatively new disease in the medical world and only recently has there been attention and mostly because people with the disease have had to become medical professionals themselves to advocate for the research as noted in an article by CNN. 

When I met Colby he hadn't heard of EDS and to be honest, I wasn't expecting him to have heard of it, many folks haven't heard of it. I knew I needed to find someone willing to learn with me to help me. I knew this would also be a risk for Colby because that would mean extra time dedicated to me without me there, doing research on his own for something that only one of his clients is presenting.  He and his team took me on! This has not been an easy journey. I walked in weak, scared, anxious but hella determined. My 'why' walking in was clear. I was NOT taking the disability option. I was going to be an athlete again. 

I was motivated to finish this article this weekend because of the OTA community.  Yesterday, OTA had an Otathlon event for their clients and families. The clients aka athletes had the option to compete or just spectate. There was a bouncy house, yummy grilled food and a physical therapist onsite as well. I decided to compete and totally surprised myself. Today I woke up feeling like an athlete. I am literally crying happy tears today because I've come so far to get here and I'm so f'ing proud of myself. The journey is not over and I am super fortunate to be working with experts who took the time to learn what EDS is and how it uniquely presents in me. 

The Road to Recovery

After a few month of working with OTA's owner Colby, he wanted to transition me to a new coach so he could focus on growing OTA. This made me nervous but I was open to it.  The new coaches curiosity and attention to detail ensuring I have the right mind muscle connection is exactly what I needed. What we focus on, things like eating properly and breathwork in combination with strength training have been eye opening for me. We've been working together for the last 4 months and he's really helped figure out the tools I need to help me when I'm in a flare up. My proprioception on the right side of my back (likely due to softball) is really bad. We go into every workout with a plan but almost always have to deviate from that plan. That's really the beauty of what OTA provides, the personalize personal training. And why I'm writing about this on a Solution Wolfe blog is because it takes agility and growth to do exactly what we are doing. And if I don't do this, I won't be capable of being the impactful leader my team needs me to be. This is not a temporary program. This is a forever lifestyle.

A Temporary Break

The last few months writing weekly has helped me hone in my skills and develop better habits around this process. With that said, I'm laser focused on my "why" and am going to take a break from the Solution Wolfe content creation to focus on my own continuous improvement and Lean Agile Intelligence. While I will still post here from time to time, I won't be so focused on marketing what I post socially.  Subscribe to keep following and thanks for your continued support of Solution Wolfe!