Sorry it's been so long between updates! I've delayed posting because I'm just not sure what to write about. I do have a few heart updates (wait for it...) but not really enough to fill a blog.
I guess I feel like it's time to make some editorial decisions around here. Now that my heart drama is not providing daily blogging fodder, I need to chart a new course. (Whew, I used "fodder" and a sailing term in one sentence. Maybe this blog should be about pirates or colonial Williamsburg.)
Or I could go a different heart route; more about living with this condition as opposed to having this condition. I've gotten quite a few messages from people (that I don't know) who are dealing with dilated cardiomyopathy (DCM if you're in the biz). The common theme of their messages is (beside how hilarious and gorgeous I am) that it's nice to hear someone say the things they've been thinking.
Because the thing about this disease is that if you have it, it's always on your mind. Maybe it gets pushed to the side for other activities or experiences, but at the very least, when you have a quiet moment, DCM takes center stage again (it's quite the diva).
I found this reader tracker and it tells where my adoring public is from. I have to say, I had no idea I was such a hit in Poland! (Latvia, obviously, but Poland??)
And while these numbers are scant by blogger standards, knowing that there are people in each of these countries who went to the internet in search of answers and kinship and finding someone who understands...well, knowing that makes me want to keep up with heart stuff and not just blog when I have some big health update like a hospital stay.
Because the beauty of this blog for me has been the outpouring of love and support I've received from my family and friends. It's been tremendous and I'm quite convinced it's why I'm doing so well. But it turns out the blog can help other people too, so I think that's the course I'll chart for awhile.
Here are some topics I think I'll write about:
- Explaining DCM to others
- Perks of DCM
- How DCM affects your loved ones
- DCM and having a family
- Sympathy- love it or hate it?
- Planning for the future
- Am I sticking my head in the sand?
Riveting stuff, eh? I'm expecting my Pulitzer prize notification any day now. Anyway, I hope I don't bore my dear friends and family. I'll try my best to not get overly technical and will keep peppering the blog with comedic genius (remember where I made a joke about the Mayo Clinic and a sandwich? Ha!).
Oh, and heart folks, please feel free to comment, ask questions, or send me a message. I'd love to help any way I can and it's a real treat to hear from you.
Much love to you all,
Jana
PS, My update from my cardiologist visit went pretty well. My latest echo (heart ultrasound) showed my EF at 20% and 30%. Yeah, it's only supposed to be one number. The doc said she didn't know why the report said that, but my heart pumping action looked the same.
However, the good news is the size of my heart had decreased slightly since my original diagnosis. Wahoo! She was also happy with the exercise test I did in May. She said that 49% number isn't very telling in people with DCM but the other indicators showed a good increase in stamina. So The Punisher can take a hike.
I continue to feel good and am trying to increase my exercise tolerance this summer. I have this pipe dream of being able to jog at cardiac rehab so we'll see what the doc says about ramping up to that. You never know!
