Wednesday, September 10, 2014

2014 Invisible Illness Week

I have been so busy that I did not realize that it was Invisible Illness Week.  Luckily, Carolyn over at Heart Sisters posted her Invisible Illness Week post yesterday.  It came across my phone and I knew I had to do the Invisible Illness Week Meme again this year--30 Things About My Invisible Illness You May Not Know.

My heart attack was in October of 2011 and by the first Invisible Illness Week in September of 2012, I still thought this didn't apply to me.  It took a long time to really realize that this invisible illness week thing would actually apply to me.  I can clearly remember a nurse coming in and talking to me about managing heart disease before they moved me out of the CCU.  I know I looked at her like she had lost her mind because to me I'd had a heart attack, it didn't kill me so now I was better.  I had no idea what the diagnosis would mean for me in my life. I know now exactly what the diagnosis means and that it is, indeed, a lifetime invisible illness.

30 Things About My Invisible Illness You May Not Know

 1. The illness I live with is heart disease post widowmaker.

 2. I was diagnosed with it in the year 2011.

 3. But I had symptoms since: Looking back probably since I was pregnant the second time.  The horrible indigestion and the dentist thinking I was crazy constantly complaining of toothaches when I didn't have a dental issue I know now were early signs of heart issues.

 4. The biggest adjustment I’ve had to make is learning that I really am sick.  Sometimes I try to ignore that and that is really not the best idea I've ever had!

 5. Most people assume that because I don't look sick that my cardiac event was not very major.  It was major enough that only 20% of women survive the kind of heart attack I had.

6. The hardest part about mornings are remembering to take my medicine. This answer has not changed since last year! Even if I put them in a day of the week pill box, I still forget to take them, get halfway down the street on my way to work and have to turn around.  Just yesterday, I put some in my desk at work so I don't have to turn around.  It is hard to turn around when you are a mile from work and have driven 50-60 minutes to get there!

7. My favorite medical TV show is: Royal Pains

8. A gadget I couldn’t live without is my cell phone.  I do social media for the AHA KC Go Red Ambassadors.

9. The hardest part about nights are worrying that I won't wake up in the morning.  I cuss that first cardiologist who told me that if I had laid down to see if I felt better I would have never woken up.  I know he was well meaning and trying to stress to me that calling an ambulance was the reason I lived.  The result though, even three years later, is that I lay down to go to sleep sure my next cardiac event will be while I am asleep and I won't ever wake up.  I may have to break down and ask my cardiologist for some sleeping pills!  This has been the reality of nighttime every night for the last almost three years.

10. Each day I take 9  pills & vitamins.

11. Regarding alternative treatments I strongly believe they work great in conjunction with traditional medicine. I use both traditional and alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose visible.  I can't remember what I said last year but this year I think visible would be better.  Sometimes when I don't take the stairs I can see the looks at the office.  Truth is, I never take the stairs on days I have chest pain.  I have words in my head for those that give me those looks and most of those words contain 4 letters.

13. Regarding working and career I kid myself most days.  I have a high stress job but I try to lie to myself and say it is not.  It affects my health because all stress affects your health.  I have started five days a week exercise --Zumba, Yoga, Pilates and Barre.  I can tell my stress is better controlled this way.  I am good at what I do and I love my job. This means I need to  control my stress  so my doc doesn't make me quit working.

14. People would be surprised to know that hmmm....I am a pretty open book so I am not sure there is much that surprises anyone.

15. The hardest thing to accept about my new reality has been that it is my new reality.  Most days I wouldn't give it back but some days I just want to forget that heart disease is my reality.

16. Something I never thought I could do with my illness that I did was speak publicly.  I guess I have more confidence about public speaking because I know the subject so well.  It is kind of hard to screw up your own story:)

17. The commercials about my illness have finally started to include women.  Yay!

18. Something I really miss doing since I was diagnosed is sleeping.

19. It was really hard to have to give up bad food.  I gave it up and lost some significant weight and then depression hit.  I gained it all back plus and now have to start the process over.  Giving up quick, processed really bad for me food has been harder the second time around.  Especially since my kitchen hates me (and trust me the feeling is mutual!) and I don't really spend any time in it.  I missed any form of domestic gene that most women get!

20. A new hobby I have taken up since my diagnosis is an old one--photography.  I went back to my hobbies when I realized I really do not have endless days to enjoy them. I love taking senior pics. This time of year in Kansas is amazing--sunflowers!  I am meeting two seniors at the fields on Sunday as well as one of my favorite co-workers for some family pics. This makes me smile.

21. If I could have one day of feeling normal again I would really cherish it and I would sleep:)

22. My illness has taught me that you should really live every day of your life--don't waste it and don't leave things unsaid.

23. Want to know a secret? One thing people say that gets under my skin is "I about had a heart attack."

24. But I love it when people ask me about what happened to me and ask me to educate them on signs and symptoms of heart attacks.

25. My favorite motto, scripture, quote that gets me through tough times is Stop Chasing Ordinary.

26. When someone is diagnosed I’d like to tell them to take their time and process what happened to them.

27. Something that has surprised me about living with an illness is that I am much stronger than I ever thought I could be.

28. The nicest thing someone did for me when I wasn’t feeling well was stay away.  I don't like visitors when I an not feeling well. I find having been in the CCU twice in  the last three years that the second time was better because I didn't have anyone in my hospital room.  The worst thing is to feel like you have to be awake to entertain visitors when you are really sick and if you are in the CCU, generally you are really sick.

29. I’m involved with Invisible Illness Week because it is a great exercise to remind myself of both the good and bad.

30. The fact that you read this list makes me feel the same as last year. It makes me feel like I lived for a reason.  I lived so I could educate all of you.   Please make me the voice in the back of your head when you think something like this can't happen to you. 



  1. Loved reading your "30 Things", Jodi! So glad I reminded you this year....

    1. I loved reading yours too:) Thanks for the reminder--it reminded me to slow down a little and do this:)