Thursday, September 3, 2009

30 Things About my Invisible Illness You May Not Know

1. The illness I live with is: Dilated Cardiomyopathy

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: certainly Heart Failure symptoms right through 2005, but I have had arrythmias since my teens

4. The biggest adjustment I’ve had to make is: Allowing my boys to go to a caregiver three times a week.

5. Most people assume: I don't know what people assume. I know I assumed someone with heart failure was near-death and would be on bed rest in a hospital. It was weird to be walking out of a cardiologists office and going home after such a diagnosis.

6. The hardest part about mornings are: Waking up still feeling tired. Like I've had no sleep.

7. My favorite medical TV show is: House

8. A gadget I couldn't live without is: My laptop.

9. The hardest part about nights are: Remembering to take my tablets, and managing to get to sleep at a reasonable time. (Nights are when I worry about everyone).

10. Each day I take about 15 pills & vitamins.

11. Regarding alternative treatments I: Am following my specialists advice at this time.

12. If I had to choose between an invisible illness or visible I would choose: Neither. Both are hard for different reasons.

13. Regarding working and career: Not working outside the home right now but haven't given up hope that I can pursue something in the future.

14. People would be surprised to know: That I never knew what a normal heart rate felt like until the dosage of my beta blocker was correct, and it felt so slow to me I thought I was dying.... don't laugh!

15. The hardest thing to accept about my new reality has been: Struggling with my weight, no matter what I do it just keeps creeping up.

16. Something I never thought I could do with my illness that I did was: Walk almost to the top of a steep hill off a walkway in my suburb

17. The commercials about my illness: I've never seen any.

18. Something I really miss doing since I was diagnosed is: Long walks. I'm building back up to them.

19. It was really hard to have to give up: Exercise when I was first diagnosed and my heart rate was unstable. Now it's just as hard to get back into it.

20. A new hobby I have taken up since my diagnosis is: Cross-stitch

21. If I could have one day of feeling normal again I would: Go for a run, take the boys hiking, clean the entire house in one go, take all my nieces and nephews to a park and play, then take them all to the zoo.

22. My illness has taught me: to slow down and enjoy the small things

23. Want to know a secret? One thing people say that gets under my skin is: When someone calls a cardiac arrest a heart attack. It's two different things!

24. But I love it when people: Give me hugs

25. My favorite motto, scripture, quote that gets me through tough times is: Happiness is not a destination, but a way of travel.

26. When someone is diagnosed I’d like to tell them: Get good support networks around you, find a way to keep in touch with close friends even if it's mass emails and take good care of yourself. Let others help you.

27. Something that has surprised me about living with an illness is: It doesn't go away. Obviously, chronic illness is chronic but seriously. It's there all the time.

28. The nicest thing someone did for me when I wasn’t feeling well was: Oh, I've been incredibly blessed by good friends and family. If you're reading this likely you have done one of these nicest things, THANK YOU.

29. I’m involved with Invisible Illness Week because: It's the first time I've heard of it and think it's a good cause.

30. The fact that you read this list makes me feel: As though you have too much time on your hands... LOL, no it's very nice of you.


  1. Thanks for posting about this! This is not an illness you hear very much about. Hope you are doing well!

  2. HI Carla~~ I just got done reading your post and now have tears in my eyes! You have a beautiful family and are an inepiration to me today!!!
    I am new to blogging and am enjoying it very much.I also lean on scripture very heavily at ALL Times!

  3. Thank you for your comments Amanda and Olga, I loved receiving them :) It really made my day too Olga that you said I am an inspiration :) I hope you get lots of enjoyment from blogging, it's a lot of fun.