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

Being Your Own Advocate is a MUST

Written by Katie. Posted in Challenges, Diagnosis Path, Editorials, Memorable Experiences

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The following article really spurred me to want to write this post.


I was reading it when Brad looked over at me and said, “What are you doing?  I didn’t even notice it but I was nodding my head repeatedly as I read the article.

I have been through some crazy times in my short 29 years, but nothing has ever compared to the extreme amount of stress I felt last year when the doctors could not figure out what was wrong with me.  When I think back, I wonder how I got through it still standing.

I have come to the opinion, that when something life changing happens, it is a matter of going into survival mode, turning on auto-pilot, and just doing what you have to do to get through each day.

I have never felt as helpless as I felt during those 7 months of aggressively searching for a diagnosis.  The stress and sickness made my hair fall out in clumps.  It made me a depressed, crazy zombie.  AND it forced me to become an advocate for myself.

By August of last year, I had seen multiple GI doctors, neurologists, cardiologists, rheumatologists, pulmonologists, physiatrists, and wellness specialists.  I was not even close to answers, and in the meantime,  I had become sicker, and sicker, and sicker.  It got to the point where my Mom would beg me to drink more Ensure because I was losing weight at a rapid pace, and my stomach could not tolerate solid food.  It got to the point, where I would ask Brad, “Am I dying? Is this what dying feels like?”  It got to the point where I thought I was losing function of each one of my body systems.  It got to the point where a doctor basically told me that they thought I was hiding an eating disorder.

On my journey to find answers, there were the doctors who told me I was just depressed.  After all, I looked healthy.  There was the doctor who told me that he had no idea what was wrong with me, but he thought I should go live at a hospital that had a functional restoration program, with a sub-speciality of psychiatry.  There was another doctor who believed I could cure myself with B 12 shots and a high dose of Vitamin C.  I spent hundreds of dollars at that office.  I was desperate for anything to help me get my life back, and he was the only doctor, who had offered me a “cure.”

Don’t get me wrong, there were also the doctors along the way who really showed compassion, and believed that something was wrong with me.  However, these doctors had the heart and the decency to admit that they just simply did not know what, and that I was beyond their expertise.  At least these doctors would always provide me with a next step suggestion of who they thought I should see next.  I learned to have a strong appreciation for these doctors, even if they were not the ones who were able to put the puzzle pieces together.

And around and around and around it went.  I remember telling Brad I felt like a ping pong ball that was just “pinging” from doctor to doctor, from state to state.

All while my hair continued to fall out in clumps.

BUT, the one thing that remained the same from appointment to appointment, was that I refused to change my story.  I always started by telling the truth, and listing ALL of my random symptoms, whether or not I thought that the doctor would think that I belonged in a loony bin.  I also always brought along my trusty green binder with tabs, that held all my test results, and records from every doctor I had seen.  That green binder was the reason why many of the doctors I saw labeled me as, “Type A.”  Whether I cried or not at each appointment, I always made sure I would not let the doctor leave the room until I had said what I needed to say, and asked what I needed to ask.  I always kept in mind what my Aunt would tell me, “The doctor works for you.”

It was a matter of sticking to my gut, and sticking up for myself.  It was hard to do at first.  But trust me, it got easier as I became sicker.  I just wanted my life back.

No matter how low I felt after an appointment, it always amazed me that after a night’s sleep, I would find the energy to get back to playing Dr. House.  It was pretty incredible how a little rest could restore my hope that there WAS a doctor out there that would eventually put the puzzle pieces together, and it was up to me to find him or her.

As my symptoms continued to increase, I figured out that I could function enough to use my computer if I laid down with my legs up.  Every night I would research for hours what could be wrong with me.  Even though what I found could be very scary, in a weird way, it felt good because it made me feel like I had control over something, which was hopefully moving me forward.

After exhausting the list of doctors that I could see locally, I began to research specialists around the country; usually at the Cleveland Clinic.  I would find a doctor, call the office, and beg them to fit me in to the schedule.  The craziest day was the morning I called Cleveland Clinic’s neuromuscular department and asked for an appointment.  They told me they had one in a month.  I started to cry.  I had had it.  I was exhausted.  I was sick.  A month seemed like an eternity.

As I bawled, the woman told me, however, that they did have a cancellation for 3:00, and it was a shame that I lived in Michigan.  I told her that that didn’t matter, I would be there one way or another.  I hung up and had no clue how I was going to pull off convincing someone in my family who was at work to take me to Cleveland.  I called my Dad, told him what I did, and begged him to take me to the appointment (at this time they were thinking I had Myasthenia Gravis).  After pulling some strings, my Dad was able to pick me up a half hour later and we were off.

Oh, the things parents will do for their children.

September and October passed.  I followed the same routine: Travel to a specialist–Have testing–Rule something else out without receiving an answer– Return home–Fall apart–Go back to researching–Find a doctor–Beg for an appointment–Have an occasional ER visit thrown into the mix–and start the process over.

My quest to find answers really was a full-time job.

My lowest point came at the end of October when I was told I should go live away from my husband and family at a Functional Restoration Program (John Hopkins was recommended) to learn how to function again.  That was the most helpless I ever felt.  I didn’t see the point of doing this, if I still did not have answers.  How would this program know what to treat?  Honestly, I felt like I was given a cop-out.

I remember melting down majorly after that appointment.  But after my hysteria had subsided, I got angry.  Pissed.  To the point that I felt a fire within me.  I knew in my heart that a FRP was NOT my answer.  I became more driven and determined to find out myself what was happening to my body.

The day after that appointment, my family was tailgating before a MSU Football Game.  I was at home obsessively researching every possibility.  I remember coming across the site, Dinet, and feeling like I had hit the jackpot.  I read the patient stories and so many of them were ME.  I knew I had found something.  I called Brad and my Mom and told them excitedly, “I think I have POTS!”

Now, you have to realize that I had already done this to them a million of times in the last 6 months (without ever being right).  They heard me out, but I could tell they were skeptical.  I said, “Brad, this time, I know it.  This is what it is. ”

As I dug deeper, I learned that people with POTS often have Ehlers-Danlos Syndrome.  I began to read about EDS and I fit the description to a T.

At this point, I was already scheduled to see my pain management doctor in Fort Wayne the next week, so I waited anxiously to run EDS by him.  At that appointment, I immediately asked him about it.  I was pleasently surprised at his openness to examine me for EDS.  He started by having me pull skin away from my neck and arms.  He had me do a lot of flexibility tests that were very easy and familiar for me, being a gymnast for so many years.  After the examination, he told me that he agreed that I needed to see a geneticist because he thought, that it was very likely that I did in fact have EDS.  A week later I was in the office of Indiana’s only geneticist.  In about 10 minutes of seeing her I was diagnosed with EDS.

As far as my POTS diagnosis goes, I had called the neuromuscular doctor at Cleveland Clinic (who was in the middle of testing me for Myasthenia Gravis) to tell him that my heels kept going completely numb and becoming bright purple.  I ended up speaking to his nurse, and telling her about my feet.  A little while later, she called back and told me that the doctor wanted me to do Autonomic Nervous System Testing (for POTS).  I was scheduled for the tests immediately.  When I returned to Cleveland for my post-testing appointment, the Dr walked in and asked me what I had.  I told him I thought I had POTS.  He shook my hand and said, “You are good.”

After seven months, my suspicions were confirmed.  I was diagnosed with both EDS and POTS.  I finally had answers.  This is probably weird to say but after the nightmare of not knowing for so many months, I felt like I was on top of the world.  It was one of the happiest days of my life.

The moral of this long, long story is this…

I believe from my experience that when a doctor doesn’t know, it is up to you to do everything that’s in your control.  It is up to you to fight for your health, and not give up.  It is up to you to research and work aggressively to seek out answers.  Some people believe that it is a terrible idea to try and diagnosis yourself.  While I can see why people say this, I also do not know if I still would be looking for answers today if I hadn’t tried to aggressively search for answers myself.  Eventually I came across them.

This is the bottom line.  I firmly believe that it is imperative to be your own advocate.  I quickly found out that no one else is going to advocate for you.  Simply put, it is up to you.


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