A Count UP

I've been totally avoiding my original plans for today, which was making jewelry stuff. Instead, I've been playing around on my laptop, changing my blog background (in case you haven't noticed!), changing the backgrounds of my Myspace page, and Joanie's (she lets me change her page, since she knows I love it! hehe), and chatting with a few friends and my sistores. We actually had a little meeting, it was the first time all 4 of us have been online at the same time in forever!!

Anyway, I obviously have two countDOWNS for 2 events, but I was playing around on the website I use to make the countdowns, and I noticed they have countUPS. I thought I'd try something. I made a new countup, of how many days it's been since I was diagnosed with PH and atrioventricular canal defect (2 holes on my heart). I have posted the countup in my profile section. I have to admit that looking at the number of days I've had PH and AV canal has been so overwhelming for me that I immediately welled up with tears. Because this is not only how long I've been diagnosed with PH. It is also how long I've been ALIVE. And when you think about it, living over 12000 days so far really does not seem all that much. However, living with PH and AV canal has seemed like forever.

It is hard to fathom living with this disease for only a few years, being diagnosed after living a fairly normal lifestyle, and then suddenly having your world turned upside down. I feel terrible for people who have to start living a different way, who have a hard time understanding what the "new normal" is for them, who have family and friends who especially don't get it at all. I can't imagine what they go through emotionally. I've lived with this diagnosis all my life, and for a very long time, being SOB and extremely tired constantly was just MY "normal." I honestly didn't know what it was like to not be SOB from just going up the stairs, or walking down the street, or even talking for hours on the phone. It was an almost every day thing for me, something I just was used to, and something I thought I'd always have. Along came Tracleer in 2003, and my world was turned completely upside down. Oh my gosh, I wasn't SOB after coming up the stairs with a basket of laundry! I could walk down the street to my parents and back without being so tired. I could actually dance for a bit and enjoy myself without having to catch my breath for at least half an hour. The meds have made a huge difference in my life, and I am so thankful for the people who have discovered them. I may not still be able to have a full time job, or to babysit my niece or nephew all day. I still run into days when I have so much energy, and then days when I'm completely wiped out. But I am completely thankful for all those days I have spent here on Earth already, all those minutes of happiness when I can complete a task without being wiped out, all those seconds I have spent being with family and friends I love so much. I hope and pray that I have so many more of those minutes to celebrate, despite PH.