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

And This Folks, is Exactly Why I Blog

Written by Katie. Posted in Ehlers-Danlos Awareness, Friends, POTS Awareness

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A few weeks ago, my roommate and teammate from college sent me a Facebook message.  At the time she was 9 months pregnant, and still working as a nurse, which makes the fact that she took the time out of her life to write me such a special letter even more meaningful

(Sidenote: She had her baby TODAY! Congrats, Dana and John!) 

After messaging back and forth, I asked Dana if she would mind if I shared her story that she shared with me.  She was more than willing to let me pass along her story on my blog.  Thinking about invisible illness awareness this week, I thought it was a perfect time to share her story as an illustration as to why it is so important that people (ESPECIALLY health care professionals) become accurately informed about the many rare diseases that are out there including EDS and POTS.

The following is an excerpt from the letter she sent me:

I have to share a story with you about one of my patients from a little while back. (BTW- I work on Sparrow’s Mother/baby floor now, in case you didn’t know)   She is an EDS mom who was able to have a baby successfully via C-section.  I spent so much time in her room talking and getting to know her story and situation.  She was so positive and I’m sure that helped her stay strong through those low, tiring, exhausting, pregnancy days.  I remember giving a report to the day nurse and telling the nurse the patient’s history of having EDS.  The nurse told me she had that patient the previous day and “didn’t really care about the EDS, or whatever it is because the Dr’s thought it was irrelevant.”

I immediately stopped that nurse and explained to her how serious it really was.  The patient’s BP was always all over the place, and I remember explaining to the nurse how this was part of the illness.  The nurse probably thought I was a wacko for knowing about this, but I was so glad to have some insight into EDS so I could share it with that nurse and any other nurses who had to take care of this patient. 

So thank you for sharing your story and information.  You never know when it will be able to change someone’s life.  I certainly was glad to have a small background so I could ask my patient about it and try to understand her feelings. 

After I messaged Dana back that it meant the world to me that she was able to advocate for her patient, Dana sent me this back,

“I’m glad you can use this as an example.  Believe me, I probably would have been as ignorant as the nurse without the information I know from your experiences.” 

Knowledge is power.  Awareness is power.  And it means so much to me that my story helped Dana to help a fellow EDS woman.

Whenever I doubt my writing, or doubt whether or not I should be laying my story out there for everyone to read, I will always think of Dana’s story.  I remember writing in my very first blog post ever, “I feel that if my story through blogging helps only ONE person along the way, I will feel victorious.”

And sure enough, reading Dana’s story did make me feel victorious for just a moment.

(Thanks again Dana, for sharing.  P.S. I can’t wait to meet Hannah Elizabeth.)

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