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

This One Goes Out to My Docs #NHBPM Carnival

Written by Katie. Posted in Diagnosis Path, Ehlers-Danlos Appointments, Medical Team, Other Appointments, POTS Appointments

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Topic: What’s something your doctor taught you?

Well, as I am sure it is true for many of you, I have many doctors.  Each one has taught me so much along the way as I have learned to manage both EDS and POTS.  Finding such a great team of doctors did not happen overnight.  It took a lot of travel, a lot of help, and a lot of patience.

This does not mean I have not seen my share of doozies. You know, the ones that look at you like you have five heads, or the ones who suggest that you work through your symptoms by “talking” to someone, or the ones that tell you that if you just eat more vegetables and fruits and take 8 million supplements that you, too, will be cured.  I have.

Trust me.

But this post, is not about those doctors; it is about the ones who have been blessings in my life.  The doctors who have become part of my team to keep me functioning…The ones who have taught me more than how to manage EDS and POTS.  The ones who have become mentors, teachers, and even friends.

First, there is Dr. Larry Nassar.  I have known him since I was three.  He kept me glued together all those years I was a competitive gymnast.  He was the one I went to when I first became sick.  Even though he was not sure exactly what was going on with me, he vowed that he would help me get to an answer.  He always listened to me and never doubted me once.  Larry would call doctors all over the Midwest to get their opinions, and at times, ask them to see me.  He researched possibilities with me, and would call to check on me; even if he was across the world with the United States Gymnastics Team.  He helped me become approved for medical leave when I was too sick to work.  He got me back to work half-time when I was finally ready.  He insisted that I continue physical therapy when the physical therapy department suggested I be discharged.  Larry was often the doctor who would pick up the pieces when I would have meltdowns in his office.  He would bring me back to the positive by assigning me homework assignments like the infamous, Apollo 13 Assignment.  Larry has taught me so much.  Like how caring for patients goes far beyond an office visit.  He constantly restored my faith in doctors, after I would see a doctor who would blow me off.  He is supportive, caring, and an incredible doctor at that.  I would truly be lost without Dr. Larry Nassar.  He has been the leader of my “team” from the start, and I credit him for having answers, and my life back.  I will forever be thankful that he has cheered me on, and that I am able to call him my doctor and my friend.

Dr. Lavallee must be next.  Dr. Lavallee is my EDS specialist in South Bend, IN.  He is my go-to guy for all of my EDS issues.  He actually has Classical EDS himself, so he knows both the personal and professional side of the disease.  I will never forget my first appointment with Dr. Lavallee, after I was newly diagnosed.  I was explaining to him how I knew that my goal of running a marathon was never going to happen because of all of the pain I was in, when he stopped me mid-sentence with, “Why not?”  Dr. Lavallee is all about proving everyone wrong, which I love.  He has become one of my idols.  Dr. Lavallee has also taught me that life does not stop with a chronic illness.  He has reiterated over and over again that living with EDS and POTS requires being strong, and therefore requires a commitment to exercise.  He has changed my perception of EDS that it is now my new sport, instead of an illness.  I get that kind of thinking.  I get him.  Dr. Lavallee has taught me that life is better when you are working towards goals, have faith, and are doing things to help others.  Many of you know that my workout with Dr. Lavallee this past summer was one of the most inspirational (and hardest) days of my life. (Click here to see the video).  I thank him for believing in me and encouraging me to live life to the fullest despite having EDS and POTS.

Then there are Dr. Rosen, my psychiatrist, Dr. Cantieri, my pain management/prolotherapy doctor, and Dr. Grubb/Dr. Karabin, my POTS specialists.

Dr. Rosen has taught me all about having perspective, believing in myself, and the importance of being mentally healthy AND physically healthy.  I am a huge believer that everyone needs someone to talk to when they have a “life interrupting” moment, like illness, pain, or loss.  Dr. Rosen has taught me that there is no shame in that.

When I see Dr. Cantieri, he always, always, always asks me about me before we touch on anything medical.  He truly is a doctor who looks at the whole person.  He is also an unbelievable listener and “pain detective.”  He has taught me that medicine is about the whole person; not just about a painful back, or neck, or POTS flare up.

It took me eight months to get into Dr. Grubb and Dr. Karabin but it was definitely worth the wait.  They were the first Dysautonomia doctors I saw who did not use a “one size fits all” approach to treating POTS.  They looked at why I had POTS (caused by EDS) and treated me from there.  I believe that it is because of this approach that I am able to exercise and work.  They have taught me that no matter how busy you are, you give the patient (or in life, the person) the time and compassion they deserve.  A few days after I got home from my appointment with Dr. Grubb, the book, When Bad Things Happen to Good People, was in the mailbox waiting for me, with a personalized note from Dr. Grubb himself.  Dr. Grubb and Dr. Karabin have taught me that life is what you make it, and everyone deserves to be treated with kindness and respect…


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