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

Taking the High Road #NHBPM Carnival

Written by Katie. Posted in Challenges, Diagnosis Path, Other Appointments

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Topic: Write about a time you had to take the high road.

Setting the scene:  The following pretty much covers a day in my life at the doctor’s while I was searching for answers, and BEFORE I was diagnosed with POTS and EDS.  This appointment was in Ohio.  I was sent to a vasculitis specialist since, a) my sister has vasculitis, and b) the neurologist I saw about MS the week before had looked up info about the medications I was on and found a study about a few people who had taken singular for an extended period of time, and later developed Churg-Strauss Vasculitis. This neurologist thought that since my MRIs did not point to MS, I needed to pursue answers about whether or not I, too, had vasculitis.

The particular conversation in 2010 went something like this…

Doctor:  So, tell me about what’s been going on.

Me:  Well, I know something is really wrong but I am not sure what.  I’ve been having problems with my stomach being distended when I eat, muscle weakness, a lot of weight loss, seeing spots, dizziness, feeling like I am going to pass out, trouble with holding my head up, migraines, back and neck pain, trouble swallowing, a lot of throwing up, and panic and insomnia…I have had a bunch of tests so far, that have all come back negative…I feel like my body is giving out and I am going to be in a wheelchair for good if I don’t get treatment soon (This included a breakdown of tears, while going through the not-so-soft office box of tissues).

After the doctor wrote down a few notes, I was told to get on the table because he wanted to check a few things out.  After feeling around my stomach, back, and neck for, hmmmm, 5 seconds, he told me he would be right back. After a few minutes of wondering what would come next, he came back with a pen and a clipboard.

And, there it was.

In all of its smiley face/sad face glory.

I am sure many of you know what I am talking about.

I had traveled 4 hours to be handed…

yup, you guessed it…


He told me to fill out the questionnaire and to leave it on the counter.  He explained that I did not have vasculitis based upon his examination and, “at this point in time, he would advise me to go talk to a professional.”

I wanted to scream.  I wanted to tear that piece of paper into small pieces.  I wanted to crawl into a hole and never come out.

At the same time I wanted to beg him to please work harder to help me figure out what else could be wrong.

I was exhausted.  Scared.  Losing hope.

I was also losing the ability to do basic things like walking up and down my stairs to do laundry.

My health was going downhill fast and no one knew why.

Thankfully, it was in that moment that I had a brief minute millisecond of clarity.  I can’t explain it, but something was telling me to just let it go.  To get out of there.  To just leave and move on.  In my panicked frustration I knew that this doctor had made up his mind and I wasn’t going to change it.

Yes, I would have loved to have given him a piece of my mind, but I knew there was no point. It was hard, but I had to make a conscious decision to not waste any more of my time in that office.  I am also stubborn and I refused to let him see me have a full-fledged breakdown.

I left that office.  I took the high road, knowing there are some people that are worth going the extra mile with, and some people who are better to just walk away from.  I am all for advocating for myself, but this man obviously did not care.

I left the office that day and walked away.  I was done.  I was ready to move forward and find a doctor who not only cared, but who would be able to put the pieces together.

I am happy to say that I have found that.  I have found specialists who care about my health and me as a person.  I have found care and treatments that continue to help me.  It has taken time, but so many doctors, nurses, and therapists have since restored my faith in the medical profession.

And that depression scale?

For all I know, it is still sitting on the counter…


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