Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Hard is What Makes it Great

Written by Katie. Posted in Challenges, Ehlers-Danlos Appointments, Favorites, Inspiration, Memorable Experiences, Thankful

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If you have been following, you know I had my chance to cross off one of my goals for the year last week, which was to work out with the incredible Dr. Lavallee.   Back in January I had asked him at my yearly EDS check-up if he would ever be willing to work out with me.  He laughed a little, I think taken by surprise, and said, “But I don’t think you need to learn many of the exercises I do…I think you are doing well managing your EDS so far on your own. “

I told him that was not why I wanted to work out with him.  I told him that he was one of the most inspiring people I had ever met, and to work out with him would not only be a learning experience and an honor, but it was sure to be an unforgettable experience for my body AND my mind.

He just smiled, looked at me, and said, “Well, let’s do it then.”

Backing up, I think it is important to understand this:  In my opinion, Dr. Lavallee’s life story could be made into a movie…It is that incredible.  His EDS is worse than mine.  He has mild POTS.  He was told at John Hopkins when he was about my age to never work out again.  He has had hundreds of stitches, multiple surgeries, and finger amputations because of his EDS…and these are just the things I know in the few times I have spent with him.


Dr. Lavallee is also the head of the sports med clinic in South Bend, IN.  He runs regular EDS clinics. He sees patients in the evening pro bono.  He works out hard every single morning around 5 am.  He travels all over as a doctor for the USA weightlifting teams.  He is the team doctor for many of the area’s athletic teams.  He has a wife and two kids.

I could go on and on and on…Dr. Lavallee is also the most positive person I have ever met.  When I am around him, I can’t help but soak up his encouraging spirit and his “live life to the fullest” attitude.

I have learned in my 30 years that you don’t come across many people like that everyday.

When I emailed him after school got out that I had made it through the school year, I could tell from his reply that he was beaming with pride for me.  When I asked if I could come sometime this summer and finally work out with him, he emailed me back with a few dates.  After a couple of failed attempts going back and forth to find a date that worked for the both of us, we finally decided on Friday, July 13th, at 5:30 am.

The last email I received from him before the workout told me how pumped he was to “hit the gym hard.”  He told me to remember my gymnastics conditioning days, to make sure I was training, and to bring my meds because I was “gonna need them.”

I’m not gonna lie.  That was when I began to have second thoughts.  I seriously jokingly told Brad, “I think I need to tell Dr. Lavallee I can’t make it.”  Brad looked at me like I had 4 heads and told me to suck it up and do it.  He knows when I need a kick in the behind.

I knew he was right.  I knew I would be so mad at myself if I did not go through with it.  I just had no idea what I was getting myself into.

Friday, July 13th came quick.  Brad and I went to South Bend Thursday night since I had to get up at 4:30.  We went to dinner, checked into the hotel, and it was an early night for me.  I recall moaning and groaning…and moaning some more as the alarm went off.  As I drank my coffee though, it started to hit me.  I was about to get to do something I had waited a long time to do.  I was about to do something I could not have done a year ago.  I was about to spend the morning with one of my heroes.

I told myself to count my blessings and to get over the fact that it was early.  I was lucky.

We were in the car by 5, headed to the gym. The building is so awesome because the gym is beautiful and massive, AND it is in the same building as Dr. Lavallee’s office.  Dr. Lavallee met me in the lobby, we hugged, chatted a minute, and then got down to business.

It became clear that this was going to be a workout I would not forget as we approached the pull-up bars.  I started to tell Dr. Lavallee I had only a 5 pound grip strength in my left hand due to my median nerve being taken out accidentally, and that I was not able to do pull-ups because I could not grip the bar.  With that, he showed me his hand without a finger, and that he, too, did not have much grip strength either.  He told me I COULD do pull-ups and he was going to show me how.  He put these wrist straps around my wrists, wrapped them around the bar, and then told me to hang on the best I could.  I realized that the straps were gripping the bars for me so I could concentrate solely on my pull-ups.  I believe, “Holy crap, am I really doing this?” came out of my mouth a few different times.  We alternated doing 4 sets of pull-ups with 4 different styles of push-ups.  I had not worked my arms like that in 13 years.

In between sets I told Dr. Lavallee that when I was being recruited by the Air Force for gymnastics, I was set to fly to Colorado Springs for the initial physical test.  Right before I was supposed to go, it became clear that there was something really wrong with my arm.  When they asked on the phone if I was able to do pull-ups and other required arm exercises, I knew I had to be honest and tell them no.  With that, the Air Force basically told me thanks, but no thanks, since I was unable pass the physical test at that time.

Therefore, 13 years later, after my median nerve removal, multiple arm and hand reconstructions, an EDS diagnosis, and a POTS diagnosis, I have to say that it was pretty mind-blowing to me that I was doing freaking pull-ups and push-ups on my own while Dr. Lavallee was yelling,”You got this, Katie, You can do this, Katie.”


After working and working…and working our arms, we moved on to the ropes.  I felt like I was on the Biggest Loser.  Those ropes were my nemesis and had me screaming, and sweating, and maybe even cursing a little.  I told Dr. Lavallee, that he was tougher than Jillian and Bob put together.  After the ropes, we continued in a circuit training way, doing about a hundred other exercises, including a lot with weight machines, free weights, and a whole lotta jumping jacks in between most exercises.

After squatting my weight (Olympic weight lifting style), Dr. Lavallee told me that because of the way I am built, combined with the strength of my legs, that I had the potential to become a competitive power lifter or Olympic style weight lifter.  He told me that the 2000 Olympic weight lifting gold medalist, was a former gymnast like myself who took up weight lifting later in life after her career as a gymnast was over.

I just smiled and said, “You never know, Dr. Lavallee.”

I don’t rule out anything these days.

As we continued to work out, Dr. Lavallee would ask from time to time how I was doing, and I always surprised myself that I was able to tell him, “I’m okay. Let’s keep going…”

After we did these crazy wheel exercises that I used to do in my gymnast days (that made my whole body shake and want to collapse), it was time to  end our workout with swimming.  I recall feeling relieved thinking it would be like a cool down.



Swimming is hard.

Really hard.

Dr. Lavallee had me swimming freestyle and breast stroke laps, alternating average speeds with sprints.  Then we would alternate laps using this leg thingy that took away my ability to use my lower body, with the kick-board that took away my ability to use my upper body.  At this point, my body was screaming to me, I felt like I was hitting a major wall, and I was convinced that I was either going to a) lose my cookies, b) drown, or c) all of the above.  But through it all, there was Dr. Lavallee yelling, “You got this Katie! Keep swimming. You can do it!”

In times like that, it’s always amazing to me how powerful the mind truly is.

When we finally finished, we cooled down with pool “bicycles,” and then Dr. Lavallee and I had to say a quick goodbye because he had to be at work in 20 minutes.  I slowwllly made it to the locker room.  It took me about 20 minutes to change my clothes because I was moving at such a snail’s pace, and I knew the inevitable sickness was coming.  Somehow I made it to the car, and we drove about 10 minutes before I was throwing up.  I puked for about a half-hour until it finally passed and I was able to lie down for the rest of the 2 hours home.

As I laid there, I could not help but reflect on the experience.  I thought back to two summers ago, when I was at my sickest and had to crawl around to get from room to room in my house, because I knew that if I stood up, I would pass out.  I thought back to all of my wheelchair rides, and the time I spent in my neck and back braces. I recalled the day I knew I had to tell my principal that I was too sick to work.  As I laid there deep in thought, I could not help but think about how far I have come with managing my EDS and POTS.  However, I also thought about all of the strengthening I have ahead of me in order for me to continue accomplishing the goals I set, while also being able to live my life the way I want to live it.

When I got home, I laid in a horizontal position the rest of the day, while I spent the last bit of energy I had working on creating a slideshow of my experience.  I decided that a slideshow would be more meaningful to me than just a bunch of pictures.  I also thought it would be something that I could also send to Dr. Lavallee as a THANK YOU.  It took me 5 hours to figure out, create, and upload, but I have to say that I’m pretty happy with how it turned out for my first go around…

So with that being said, the following captures some of what I accomplished with Dr. Lavallee Friday morning:


 Finally, I think this poster sums up my experience pretty darn well:

I have to say, I did on Friday.

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