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

Zebra Questions #NHBPM Carnival

Written by Katie. Posted in About Me, Chronic Illness, Lists, Questions

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Topic: What questions do you have for other patients?

One of the most important things for me is sharing with fellow zebras.  There is nothing like being able to talk to someone who is living a life similar to mine.  I’m sure many of you will understand what I mean when I say what an amazing feeling it is to meet someone who just “knows” what you are going through, because they are living it too. 

I have found that some of the best things I have learned along the way are songs, quotes, techniques, readings, thought processes, etc. that help others with chronic illnesses maintain a healthy state of mind, despite the stress that an illness often brings.

Therefore, these are the kind of questions I want to focus on:

  1. What are your “go-to” books when you need perspective, a dose of positivity, or some inspiration?
  2. What about music?
  3. And quotes?
  4. Do you have any tricks that help you get out of a rut, or a dark spot, and maintain a healthy frame of mind?

It would only be fair if I answered too:

1.  Reading:

  • Coraggio: Lessons for Living from an Italian Grandmother Despite Pain, Illness, and Loss; Books 1-4 (Gigliotti)
  • God Never Blinks (Brett)
  • When Bad Things Happen to Good People (Kushner)
  • Personal Blogs that focus on living life to the fullest despite adversity.

2.  Music:  This is hard..It changes everyday depending on my mood, and what I may be going through at the time.  Some of them include:

  • U2
  • Chris Trapper
  • Great Big Sea
  • DMB
  • Bob Seger
  • Ray LaMontagne
  • “The Humpty Dance” when I need a work out pick-me up.  I can’t believe I just admitted to that.
  • 80’s Music
  • “Let it Be” by the Beatles


  • If it is to be, it is up to me.
  • Be miserable. Or motivate yourself. Whatever has to be done, it’s always your choice. ~Dyer
  • HOPE has two beautiful daughters:
    1) ANGER at the way things are.
    2) COURAGE to change them.
    ~St. Augustine
  • Perspective is a party guest you didn’t necessarily invite, but you desperately needed to talk to. ~Chris Trapper
  • Impossible is not a fact.  It’s an opinion. ~Ali
  • Never give up on a dream just because of the time it will take to accomplish it. The time will pass anyway. ~Nightingale
  • We must embrace pain and burn it as fuel for our journey. ~Miyazawa

I could go on and on and on…

4.  Some of my tricks that help keep me mentally healthy:

  • Besides music, books, and quotes, I always have a list of goals I am working towards.  This gives me purpose and it so rewarding when I am able to accomplish them.
  • Staying strong and working out.
  • Speaking to my shrink regularly.
  • Surrounding myself with people who love me unconditionally and who are positive influences on my life.  No drama!
  • Speaking up about my limits~what I can do and what I am not able to do that day.
  • Finding a passion: Right now it is planning our invisible illness benefit and making Life as a Zebra Foundation a 501 3c.
  • Spending time with kids.  When I am with my five-year-olds, it is easy to forget my troubles.
  • Family.  Enough said.
  • Retail Therapy.  (Just a little, Brad…)
  • Focusing on my good health.
  • Talking to people who inspire me.
  • Having a medical team that cares about my health and me as a person.

Now it is your turn! Share away my fellow zebras!

~ Katie ~ xoxo

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