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

30 Things: Invisible Illness Week 2013

Written by Katie. Posted in About Me, Chronic Illness, Ehlers-Danlos Awareness, Invisible Illness, POTS Awareness, Questions

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Hi friends! Invisible Illness Week is fast approaching (September 9-15). I was asked to fill this out, and just before I was about to respond with, “I already did it two years ago,” I thought about it and realized a lot has changed in two years.  Therefore, some of my answers are different and some have remained the same.  I wanted to post it early, before school starts, since I am unsure how my body will respond or adjust to being back to work again.  So here you go. My 30 things.

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

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

3. But I had symptoms since: 2009.  All of my symptoms came on very suddenly after I stopped running.

4. The biggest adjustment I’ve had to make is: I can’t do it all anymore.  I had to give up full-time teaching and go half-time.  Having to ask for help. Accepting that these illnesses are a part of my life now so I can either fight them or embrace them. Learning to let go because there are some things that are, and always will be, out of my control.

5. Most people assume: I am fine on days I am struggling.  I think many people with invisible and chronic illnesses learn how to become actresses or actors to a certain extent.  At times it is a means of coping and survival.

6. The hardest part about mornings are: Showers. I usually get sick after showers because a lot of my blood pools in my legs and I do not get enough blood to my brain. Also, if I’ve had a bad insomnia night, it is so hard to function. Thank God for coffee.

7. My favorite medical TV show is: Let’s see. I watch the Today Show, CNN, Kelly & Michael, New Girl, Real Housewives, Parenthood, Dateline, SYTYCD, & 48 Hours Mystery. So I guess I don’t watch any medical shows…they would freak me out anyways.

8. A gadget I couldn’t live without is: My laptop & my iPhone. They help me connect with people all over the world. Today I talked with a girl in Australia who has POTS.  I Skyped my siblings and nieces twice. I sent an email to Ireland.  If you think about that, that’s kinda cool.

9. The hardest part about nights are: INSOMNIA. It’s the worst because I know that if I don’t sleep, functioning the next day will be ten times as hard.

10. Each day I take: 4 pills in the morning, 2 pills mid-day, 4 pills at night, and other “as needed” meds at times.  I rock my 7 day pill-box like a boss. I also drink 2 liters of Smart Water each day.

11. Regarding alternative treatments: The most “alternative” of the treatments I do is prolotherapy.  I am going on three years of treatments and so far I have been able to dodge major surgeries.  Other regular treatments I undergo are acupuncture, Osteopathic Manipulative Medicine, & lots and LOTS of physical rehabilitation.

12. If I had to choose between an invisible illness or visible illness I would choose: I didn’t like this question two years ago and I don’t like it now. A huge part of dealing with a chronic, invisible illness is acceptance.  I have learned that I do not get to choose.  I have what I have and they happen to be invisible.

13. Regarding working and career: I taught either first grade or pre-kindergarten and kindergarten full-time for 5 years before I became sick. When I first became sick, I had to take a year off of teaching to learn how to function again.  I returned to work half-time and have since made the decision with my doctors that half-time is what is needed for my health.  I feel thankful that I have a school district who will accommodate me to allow me to continue teaching my pre-kindergarteners and kindergarteners each morning.  I start my ninth year on Tuesday! I am also now the President of the Life as a Zebra Foundation.  One day, I hope I can add “Mom” to my list of “titles.”

14. People would be surprised to know: I have a lifelong handicap sticker.  I am not always as strong as people think. There are quite a few things I am scared of. I secretly love that I know my wheelchair is in my garage for the times I really need it.

15. The hardest thing to accept about my new reality has been: That there are times that no matter how hard I try, I cannot make my body cooperate. That starting a family becomes really complicated. That I have to slow down, that I can’t do it all, and I’ve had to learn to say no.

16. Something I never thought I could do with my illness that I did was: Go back to work. Shop without a wheelchair. Do many 5k’s. Teach aerobics. Dance, dance, dance. Complete FlexCity Fitness Classes. Teach a week of dance at Twistars Camp. Survive a work out with Dr. Lavallee. Meet some incredible people. Start a foundation. Put on two benefit concerts. (I have come to realize that living with invisible, chronic illnesses is all about setting goals, working towards them, accomplishing them, and then setting more).

17.  The commercials about my illnesses: Do not exist. Have you seen any?

18. Something I really miss doing since I was diagnosed is: Feeling that runner’s high that comes from running hard.  It is hard for me to run because I still have some cranial instability. Also, just living a carefree life where I do not have to think twice about if the choices I make will make me sick or will make me pay later.

19. It was really hard to have to give up: Living carefree. Running. Full time teaching. Control. Eating certain foods I love like breads and pastas.

20. A new hobby I have taken up since my diagnosis is: The Life as a Zebra Foundation! Raising awareness and funds for invisible illness research and education. Blogging.

21. If I could have one day of feeling normal again I would: Run a race, then take a super long hot shower, then go shopping, then go to the beach, swim in the water without getting sick, and finish the day at a concert where I dance and dance (all while eating as much bread and pasta as I want).

22. My illness has taught me: To live in the now. To slow down and appreciate the little things. That no matter how bad things are, they can and will get better.  To appreciate the people who love me and have shown me time and time again that they would do anything for me. That positive relationships are everything. That taking care of myself is necessary. That there are always things in my control. That there is peace in faith and spirituality. That being happy is good for my health. To never take anything for granted because things can change in instant. That I don’t have the energy for drama. That there are so many beautiful people in this world. To say I love you more. That laughter gets you through a lot.

23. Want to know a secret? One thing people say that gets under my skin is: There are a few: “But you look so great.” “But you are too young to have all of these health problems.” “I wish I could work just half-time.” “I wish I could nap everyday.” HOWEVER, I realize that 99% of the time, people mean well and are just trying to help.  They just need EDUCATION about these invisible illnesses, and I now see that as my job.

24. But I love it when people: ask questions, and really listen to the answers. And when my loved ones understand if I have to cancel plans because POTS and EDS can be so unpredictable.

25. My favorite motto, scripture, quote that gets me through tough times is: So many. I’m like a walking quote book.  Whatever gets you through, right? I think my top 6 would have to be:

  •  “I can’t do everything but I can do something.”
  • “In three words I can sum up everything I’ve learned about life. It goes on.” ~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)
  • “We must embrace pain and burn it as fuel for our journey.” ~Miyazawa

26. When someone is diagnosed I 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.  No matter how dark things may seem, they can get better.  You are your best advocate. No one else is going to do it for you. And hope is your best friend.

27. Something that has surprised me about living with an illness is: I have learned to love myself and appreciate myself more…all of me. The love and support I have received from so many loved ones, friends, and strangers near and far is truly mind blowing.

28. The nicest thing someone did for me when I wasn’t feeling well was: There is no way I could pick just one. The list is long. And I mean long. I’m blessed.

29. I’m involved with Invisible Illness Week because: I’m passionate about educating others that these illnesses are real. There are so many illnesses out there that people, even doctors, do not know about.  We must raise awareness if we are ever 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: Blessed. Grateful. Supported. Loved.

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