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

Invisible Illness Awareness Week

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

This survey has been circulating around FB and the Blogosphere…So in honor of promoting Invisible Illness Awareness I, too, am jumping on the bandwagon.

1. The illnesses I live with are: Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome) and Ehlers-Danlos Syndrome, Type 2/3.

2. I was diagnosed with it in the year: 2010

3. But I had symptoms since: 2009

 4. The biggest adjustment(s) I’ve had to make is: Learning that I can’t do it all anymore, slowing down, having to consciously make choices each day so I don’t get sick, and learning that there are some things that are out of my control.

5. Most people assume: I would not say most, but many people assume I feel okay since I look okay.

6. The hardest part about morning is: Now being back to work, having to hurry to get out the door, when my body is begging me to go slow.

7. My favorite medical TV show: Grey’s, I guess.  Not really because of the medical issues, but more so because I just enjoy the show.

 8. A gadget I couldn’t live without is: A tie between my laptop and my iPod.

9. The hardest part about night is: When I can’t sleep because my Autonomic Nervous System has gone into overdrive, but I still feel so exhausted.

10. Each day I take: 3 medications in the morning, 5 medications at night, and a few “as needed” meds throughout the day.  I also drink at least 2 liters of Smart Water a day.

11. Regarding alternative treatments: The jury is still out for me.  I have found that traditional medicine has helped me the most this year, but I still believe that for ME, there is a place for a balance between traditional and alternative treatments.  On second thought, prolotherapy is considered to be an alternative treatment, and it has helped me quite a bit.

12. If I had to choose between an invisible or visible illness I would choose:  Not sure how I feel about this question.  My journey of learning to accept EDS and POTS has taught me that I do not get to choose.  I have what I have and they happen to be invisible.

13. Regarding working and career: I was on full-time medical leave last year from teaching pre-kindergarten and kindergarten.  I am thankfully back to teaching half-time this school year.  I am taking it day by day.  In the future, I could also see myself as a personal trainer/physical therapy assistant who specializes in treating EDS patients.  I definitely see myself as a Mom in the near future.

14. People would be surprised to know: I throw up frequently, I still need my wheelchair for some shopping trips and outings, and I have a life-long handicap sticker for parking, which I use on my bad days.

 15. The hardest thing to accept about my new reality has been: Again, that I can’t do it all, that I need to stop when my body tells me to, and that starting a family is going to be much more challenging than I ever anticipated.

16. Something I never thought I could do with my illness that I did was:  Go back to work.  Shop without a wheelchair.  Walk to receive communion every Sunday.

17. The commercials about my illness: I have never seen any EDS or POTS commercials.  Have you?

18. Something I really miss doing since I was diagnosed is:  Running races and not having to think about the choices I make everyday, and if they will make me sick.

19. It was really hard to have to give up: Being carefree.

20. A new hobby I have taken up since my diagnosis is: Blogging.

 21. If I could have one day of feeling normal again I would: Run a race.

 22. My illness has taught me: To not take anything for granted, to live day by day, that there are always things in my control, that life can change in an instant, that the relationships in my life are what I value most, that there are so many beautiful people in this world, and to have Faith in God.

23. Want to know a secret? One thing people say that gets under my skin is: It used to be, “But, you look so great.”  Not so much anymore because I realize people are just trying to be nice.  It does bother me though when people try to suggest that I just “push through” because by now, I know my body, and when to push and when to back off.  No matter what, I have to realize that 99% of the time, people mean well and are just trying to help.  They just need EDUCATION about these invisible illnesses!

 24. But I love it when people: Ask me questions and try to understand.

 25. My favorite motto, scripture, quote that gets me through tough times is: So many.  Here’s just a few:

  • Jeremiah 29:11
    For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.
  • “In three words I can sum up everything I’ve learned about life. It goes on.” ~Robert Frost
  • 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)
  • “When the road ahead seems long, look back to see how far you’ve come.”
  • “We must embrace pain and burn it as fuel for our journey.” ~Miyazawa

26. When someone is diagnosed I’d like to tell them: Coraggio!  Have faith and continue to seek out options/treatment plans/doctors/etc if you are not getting anywhere.  There are always other options out there.  And hope is your best friend.

27. Something that has surprised me about living with an illness is:  That I have been able to be emotionally strong most days.  The support I have received from others…Near and far, from Brad, my family, my friends, and even from complete strangers.

28. The nicest thing someone did for me when I wasn’t feeling well was: There is no way I can pick one thing.  All of the visits, the spaghetti dinner my school held for me last year, my principal bringing me holy oil and praying with me, the staff at my school stepping up when I couldn’t be there to make sure the kids were okay, the daily notes I got from Brad, my Sunday outings with my Mom, all of the emails, meals, songs, calls, gifts, messages, flowers, texts, etc that I continue to receive on a regular basis from family, friends, and strangers.  I could go on and on. I am a lucky girl.

 29. I’m involved with Invisible Illness Week because: There are so many illnesses out there that people, even doctors, do not know about.  We must raise awareness if we are going to move forward with receiving better treatment plans, an overall better understanding, and hopefully even cures.  It is also important for me to express that even if someone looks great on the outside, that does not mean their body is not wreaking havoc on the inside.

30. The fact that you read this list makes me feel: Grateful that you took the time.

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Comments (1)

  • Sara

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    Honestly, you make me so proud of you!

    Reply

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