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

A Memorable Day in South Bend

Written by Katie. Posted in Ehlers-Danlos Appointments, Ehlers-Danlos Awareness, Inspiration

Two Thursdays ago, Brad and I headed to South Bend to see Dr. Lavallee.  It had been a whole year since my last visit with him.  I was not only ready to discuss a bunch of EDS things, but I was really looking forward to spending some time with Dr. Lavallee, himself. 

Dr. Lavallee has become one of my real-life heroes.  Throughout this last year, one of my “go-to” mottos on really hard, sick days has become WWDLD (What would Dr. Lavallee do) since Dr. Lavallee has severe classical EDS (type 1).  This motto has helped pull me through many difficult occasions.

It is a rare gift to meet someone who immediately touches your life forever.  Dr. Lavallee has done that for both Brad and I.  I always have the hardest time explaining in words what a visit with this man is like.  Words like magical, inspirational, and compassionate come to mind, yet they just don’t seem to be enough.  But since I don’t know how else to describe the visits or Dr. Lavallee himself, I guess I will just have to try.

He walked into the appointment and greeted us with his bigger than life persona.  He sat down, and explained that one of his residents would be joining him.  He then rattled off all the things we discussed a year ago.  It was amazing how he remembered things down to the smallest detail.  Then he looked me straight in the eye, and asked, “Tell me how your life has changed since last year.”  I updated him the best I could about physical therapy, POTS, going back to work, goal setting, prolotherapy, manipulative medicine, my neck, my ribs, etc, etc, etc…

He typed as I talked and when I paused, he looked at me again and said, “But, let me ask you this.  Are you happier now than the last time I saw you?”

It may seem like a simple question, but it was one that put a lot of things into perspective for me.  I looked up and said a simple, “Yes.”  He went on to ask me why.  I explained that at my last visit with him, I had no idea what my new diagnoses of EDS and POTS would mean for me.  I had no clue if they would be progressive, and continue to make my body fall apart more and more.

I told him that this year has shown me that I actually do have control over my body and definitely my mind in terms of what I do for them, how I think about them, and how I treat them.  I explained that I have realized that while I have lost a few things from having EDS and POTS, I have gained so much more, and from that comes true happiness.  I told him I have learned a lot more about who I am and what I want out of life, and that I have learned that I am stronger than I ever thought I was.  We shared an emotional moment right then.  That man never fails to make me cry.

As we discussed a plan for physical therapy, Dr. Lavallee suggested that I do another couple of months, and then try to rehab on my own.  He reiterated that after already doing a year of PT, along with my background as an athlete, that I should be able to maintain pretty well on my own.  However, he did say that PT will always have a place in my life, and that it should be used for when I experience the inevitable flares that good ol’ EDS brings.

As Dr. Lavallee examined me and tested my strength, he commented that it was obvious that I have been working hard.  He did suggest that because of all my rib issues, he wants me to continue working hard on strengthening my core.  He also agreed that it is important for me to continue prolotherapy treatments in my back and neck.

Dr. Lavallee is all about setting BIG goals.  This, he explained has been a secret of his successes with having severe EDS himself.  He asked if I had made goals, and I told him I had made 50 of them.  We discussed many of them and how I was going to accomplish them.  This in itself is just one of the many reasons why I have so much love for this man.  Dr. Lavallee treats EDS as a sport that is meant to be played.  My brain gets that.  I find comfort in that for me. 

He then had his resident come over and examine my hypermobility, skin, and eyes.  He had her look at my eyes, and asked, “What do you notice about Katie’s eyes?”  She said well, “They are very blue.”  Dr. Lavallee pushed with, “What else?”  After a few seconds, he explained to her that I have epicanthal folds which are often characteristic of people with EDS.  He also had me demonstrate how stretchy my skin was, along with the hypermobility of a few of my joints.

Dr. Lavallee then surprised me by bringing up that he has heard through the grapevine that I have become quite a patient advocate for people with EDS and POTS.  (I guess he has heard this from other patients).  He asked if I would be interested in working with the Michiana EDS Chapter.  I told him that I would be interested in finding out more about it, so he set me up with the contact information to get involved.  This is now on my growing to-do list.

At the end of the appointment I got up the nerve to ask Dr. Lavallee something I have been wanting to ask him for some time.  I started by saying, “Please don’t think I am creepy by asking this (cue Brad hitting himself in the head) but I was wondering if you would let me work out with you sometime so I can see how your EDS workouts go?”

Dr. Lavallee just smiled, and said, “But, I think you are really on the right track for what you need to do for your body, and I don’t think any of the exercises I do will really help you much.”

I told him that that was not why I wanted to work out with him.  I told him that ever since I met him last year, he has been an inspirational figure in my life, and the fact that he only takes two days off a year from exercising is amazing to me.  I explained that I would always tell myself that if he was able to exercise, then I could too.  I told him that it would be more of an inspirational and meaningful experience for me, if I had the opportunity to work out with him.

With that, he said, “Well, then, let’s do it.  Next time you are in town call me and we will go to the gym (the gym is in the same building).  But just know that you will be sore.  Remember, I am a strength and conditioning coach too.”

As he typed up my records, so I could take them with me, he specifically put in my notes that “Katie will return for a work-out with me next time she is in South Bend.”

You never know if you don’t ask, right?

As he left, I told him that I thought he should write a memoir.  I explained that I thought that there was a place in the EDS world for his perspective, knowledge, and experience with having EDS, all while working as a strength and conditioning coach, sports med doctor, Dad, husband, Cub Scout Leader, and EDS specialist.  (I’m sure I am missing a million more things).

His last words to me?

“I think maybe down the road.  But, you know, I will probably need someone to help me write it.”

And with that, he winked at me and walked out the door.

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Comments (1)

  • Ila

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    He’s amazing isn’t he? I love him!!!!

    Reply

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