1. The illness I live with is: Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Hypertension
2. I was diagnosed with it in the year: 1992
3. But I had symptoms since: 1992
4. The biggest adjustment I’ve had to make is: My low salt diet, no caffeine and no roller coasters
5. Most people assume: Just because I look healthy, that means I am.
6. The hardest part about mornings are: Having enough energy to actually get out of bed.
7. My favorite medical TV show is: ER, before it went off the air.
8. A gadget I couldn’t live without is: My pacemaker/defibrillator and oxygen tank
9. The hardest part about nights are: I lay awake, worried about my future
10. Each day I take __ pills & vitamins. 45
11. Regarding alternative treatments I: In my case, they don't work and are impractical.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. While having a visible illness may make people be more understanding since they can see it, I would rather them assume I'm like any one else and treat me as a normal person.
13. Regarding working and career: I worry about if anyone will hire me because of how much insurance will cost. I wanted to be a nurse for as long as I was little, but I know now that it is too physically demanding for me.
14. People would be surprised to know: I need a heart and lung transplant and I am not allowed to have biological kids.
15. The hardest thing to accept about my new reality has been: It's not a new reality for me since I've been living with this my whole life. But I've never gotten over the fear of dying.
16. Something I never thought I could do with my illness that I did was: Graduate high school
17. The commercials about my illness:
This question makes no sense
18. Something I really miss doing since I was diagnosed is: I have never been able to breath like a normal person. I'd love to know how that feels.
19. It was really hard to have to give up: Roller coasters and salt.
20. A new hobby I have taken up since my diagnosis is: Sign Language
21. If I could have one day of feeling normal again I would: Go on a roller coaster, eat KFC, have Mountain Dew and go skydiving.
22. My illness has taught me: Never give up and miracles do happen.
23. Want to know a secret? One thing people say that gets under my skin is: "You look healthy."
24. But I love it when people: Take the time to really understand what I'm going through.
25. My favorite motto, scripture, quote that gets me through tough times is: "Be kinder than necessary, for everyone you meet is facing some type of battle."
26. When someone is diagnosed I’d like to tell them: Just hang on, it does get better and it doesn't mean your life is over.
27. Something that has surprised me about living with an illness is: I am not alone. I used to think I was, but I know now that I'm not.
28. The nicest thing someone did for me when I wasn’t feeling well was: Just listen to me complain and be there for me, supporting me.
29. I’m involved with Invisible Illness Week because: I know first hand what it feels like for people to think you're faking it or think you are healthy just because of how you look. I want people to become more aware that you really can't judge a book by its cover.
30. The fact that you read this list makes me feel: Like there is hope that people will start to be more understanding and aware.