Sunday, September 9, 2012

30 Things About MY Invisible (but NOT Imaginary) Illness!

1. The illness I live with is: Arrhythmia.  My full diagnosis is "Ideopathic Ventricular Tachycardia/Ventricular Fibrillation which means we don't know why, but your heart goes too fast then stops!    
2. I was diagnosed with it in the year: 2008, after my cardiac arrest.  
3. But I had symptoms since: Well, the cardiac arrest was the first big symptom.  Unmistakable, really.  It was a really REALLY good symptom to have.  
4. The biggest adjustment I’ve had to make is: to SLOW DOWN and RELAX!
5. Most people assume: I'm cured.  There is treatment, and I'm doing very well, but I'm not cured.  
6. The hardest part about mornings are: getting moving.  But I've never been a morning person. 
7. My favorite medical TV show is: House. I keep hoping a real-life House will show up and diagnose me with something I can just take an aspirin for and be all better.  Then I would run a 5K, get skinny, and hit the talk show circuit.  Then the Unicorns start flying me over the rainbows...but a girl can dream.  
 8. A gadget I couldn’t live without is: the Maximo VRII AICD that lives in my chest and shocks me when my rhythm gets too fast.  
9. The hardest part about nights are: shutting down my mind as it races with thoughts and memories and fears about my heart.  What if this is my last day?  Have I lived it properly?  Will my kids have good memories of me if this is it?  Have I told everyone I love them.  Would God be pleased to see me?  Have I loved Luke well enough?  Do my friends know how I feel about them?  Have I apologized?  Have I prayed?  
10. Each day I take 13 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: do what I can to be healthy.  
12. If I had to choose between an invisible illness or visible I would choose: Sometimes it would be better to be visible, but I don't like pity. It would have been better to have a visible disability than when I was on the wrong beta blockers.  Mostly I looked (and felt) like I was on a bad drug trip, or having an extended "Woodstock-type" experience.  It would have been nice for people to see that I was medicated and not just bizarre.  
13. Regarding working and career: My heart event was the catalyst to becoming a published writer.  I am thankful for my heart disease reminding me that if I die now, I take all my thoughts and stories and ideas with me.  God's got lots of stories already, He wrote them all!  No point in taking them all with me!  
14. People would be surprised to know: how much control they REALLY have over their cardiac health.
15. The hardest thing to accept about my new reality has been: I have to be a little less critical of myself.  I've always been my own worst critic, and I've had to learn to give myself a break.  
16. Something I never thought I could do with my illness that I did was: Dance my socks off at the Symposium!  
17. The commercials about my illness: Don't exist. 
18. Something I really miss doing since I was diagnosed is: Dancing for hours with wild abandon.  I had to reel in the abandon, and cut the hours.  I do love to dance!  
19. It was really hard to have to give up: Running.  I know this surprises some of you, since I'm not a good runner.  I ran my first and second 5K the summer before my diagnosis.  It's not that I loved to's just that I COULD run.  I don't like being "unable" to do anything!  I just can't run yet.  Maybe someday, but not today.  
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: just enjoy it.  I do have days when I forget about my heart disease, or at least tolerate the little things I need to do to feel like a real live girl.  I truly am blessed with lots of good days.  Bad heart days are terrible.  I wouldn't wish them on anyone.  
22. My illness has taught me: to forgive and forget.  Life is too short to stay mad.  Some things can be left on the salon floor.  I an learning to forgive my body for betraying me, but that's a work in progress.  We're talking.  We go to dinner sometimes.  We're working on getting back together.  
23. Want to know a secret? One thing people say that gets under my skin is: "I don't have heart disease, I just have..." then they list a myriad of cardiac problems a mile long that ARE heart disease!  I used to do this too. DENIAL!  "I don't have heart disease, I just have a rhythm problem." BUNK!  Dude, I was dead on the floor without my own pulse!  It's called HEART DISEASE!  A Dis-Ease of the HEART!  Now I say it.  Now I own it.  
24. But I love it when people: tell me they are glad I'm still here.
25. My favorite motto, scripture, quote that gets me through tough times is: "The light shone in the darkness and the darkness could not overcome it." Also, when I pray and ask God why, He always responds the same. "Because I love you!"
26. When someone is diagnosed I’d like to tell them: It won't always feel like this. Just hang in there.  You are not alone, you've got lots of heart sisters!  
27. Something that has surprised me about living with an illness is: how many others are walking around with similar issues that are living in fear and loneliness.  
28. The nicest thing someone did for me when I wasn’t feeling well was: Pray for me and with me. 
29. I’m involved with Invisible Illness Week because: I thought you'd want to know what it's like to look healthy on the outside, but not so much on the inside.  
30. The fact that you read this list makes me feel: Strong, loved, heard, blessed, and like maybe I'm taking one for the team!    

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