Saturday, May 12, 2012


1. The illness I live with is: Neurocardiogenic Syncope (NCS), Inappropriate Sinus Tachycardia (IST), Sick Sinus Syndrome (SSS - tachy not brady), Mitral Valve Prolapse Syndrome (MVPS), Gastroesophageal Reflux Disease (GERD), Insomnia, Migraines, Anxiety, Palpitations and many many more.

2. I was diagnosed with it in: NCS, IST - February 2012, SSS and MVPS - April 2012, GERD - December 2007, Insomnia still testing, migraine not formally diagnosed, anxiety - 2003, Palpitations - 2012, etc.

3. But I have had symptoms since: NCS - 1999. IST - 2007. SSS - 2007. MVPS - 1999. GERD - 2007. Insomnia - 2005. Migraines - 2000. Anxiety - 1998. Palpitations - 2007. Etc.

4. The biggest adjustment I've had to make is: Not being as active as I'd like.

5. Most people assume: That I'm lazy or pretending.

6. The hardest part about mornings are: Being awake. I'm either exhausted from no sleep, still tired from poor sleep, tachycardic from my alarm startling me, etc.

7. My favorite medical TV show is: Probably House. Though Scrubs is ok.

8. A gadget I couldn't live without is: My cell phone. If I didn't have it I'd forget a whole lot, be bored, not be able to research, not get help if I need it, not be able to keep track of anything etc.

9. The hardest part about nights are: Not being able to sleep, migraines, anxiety etc.

10. Each day I take __ pills/vitamins: Currently none. I'll be starting a few in August though.

11. Regarding alternative treatments: Depends on what it is and if it works. I'm leery of alternative stuff though.

12. If I had to choose between an invisible illness or visible, I would choose: Neither. And I know that's not an option but they both suck hard core. Visible illnesses you are the shock or horror or disgust or pity. Invisible it's hard to get help or people to believe you. It's a lose/lose situation.

13. Regarding working and career:  It's not currently possible.

14. People would be surprised to know: Just how bad I feel/how sick I am. Which brings us back to "invisible illness". I don't LOOK sick. When talking to friends, their eyebrows meet their hair line and jaws drop. Techs taking my history "My goodness, you're only 23!" Not even my spouse knows the full extent of it.

15. The hardest thing to accept about my new reality has been: It's not new. I've been sick for a very long time. Though I suppose the whole "there is no cure" is new so there's that. That is hard to accept. Even medicines I'm going to be taking can only try to lessen my symptoms. My "treatment" plans aren't to cure, it's to manage. And that sucks.

16. Something that I never thought I could do with my illness, but did: I never knew exactly what I had or it's limitations so this question will have to be put on hold. Maybe I'll make a long bucket list.

17. The commercials about my illness: As far as I know, my biggest ones, there are no commercials.

18. Something I really miss doing since being diagnosed: Nothing. The diagnosis didn't change anything, it just have me clarity. What I miss pre-illness - being active and wholly happy.

19. It was really hard to have to give up: Being active, doing whatever whenever.

20. A new hobby I have taken up since my diagnosis: Nothing yet. I'm in the market.

21. If I could have one day of feeling normal again I would: What is normal? I've been sick more of my life than I've been healthy. I'd love to feel completely healthy for one day and just be able to do a million things without getting tired or dizzy.

22. My illness has taught me: Don't take small things for granted. Those stairs you just walked up? Will make my heart race. Running late and rushing? I'll be lucky if I don't get dizzy, tachy and out of breath. Your kid is bothering you wanting you to dance with them or run chase them? I can't do that without being physically exhausted. Picking toys up off the floor (or anything really) I can't do that, it makes me dizzy. Try deep cleaning while sitting, and no ups and downs. Yea... It takes me hours to clean.

23. Want to know a secret? One thing people say that gets under my skin: You don't look sick/you're not that sick. I'm so glad you know how I feel. I know I don't look sick. But I am. I try not to show it though because it's depressing and even embarrassing. Most embarrassing public moment. Passing out in Walmart while pregnant.

24. But I love it when people: Believe me. Sympathize. CARE.

25. My favorite motto, quote or scripture that gets me through tough times: Cheesy but all I've got is "What doesn't kill me will only make me stronger."

26. When someone is diagnosed I'd like to tell them: You're not alone.

27. Something that has surprised me about living with an illness: The level of denial. How exhausting every day tasks are.

28. The nicest thing anyone has/can ever done/do for me when I didn't/don't feel well: Care. Even if you can't "fix" it, let me know you care. Run my back, hold my hand, hold me, just being there helps.

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