I have noticed that ever since I've become a part of the Wellsphere website, my blog has been getting many new visitors. I've received a couple new readers who have left kind comments (thank you so much), and I realize that I probably have many silent readers who either don't have anything to say, or just don't know how to say it. I figured since my blog is looooooooong, considering I've had it at least 5 years, that perhaps I'd do an introduction of myself. And for any of my long-term readers out there, here's a reintroduction!
I was diagnosed at 9 months old with congenital heart disease and pulmonary hypertension. Basically, my heart has 2 holes in it, and my lungs don't make it easy for me to breathe. My pulmonary artery is constricted, causing a lot of shortness of breath and fatigue when doing almost anything. Pulmonary hypertension (PH) was barely even known back when I was diagnosed, and my parents were told that it was too late to try closing the holes in my heart. They told my parents I might not make it to my first birthday, or that I could possibly live until I was 50. I honestly don't think they expected me to live as long as I have so far, 34 years. Ha, fooled them!
I grew up only taking one medicine for my heart to help it beat better, but there was absolutely nothing to treat the PH. So I was put on a lot of restrictions. No gym class, ever. No sports, ever. No dance classes, ever (although I did try a few dance classes when I was little and it was just too much for me to handle). I ran around the neighborhood with my sisters and all the other kids as much as I could, but I had an awful lot of time outs. I did participate in other things, such as organ lessons, Girl Scouts, Art Wheels. I grew up knowing that I couldn't do a lot of the physical things everyone else could, which sometimes bothered me, and sometimes didn't. I'm thankful that I accepted most limitations, because I really don't believe I'd still be here if I pushed them.
This doesn't mean I never had symptoms. Oooooh, I sure did. And looking back, I really wonder how I made it this long with how bad the symptoms were at some points. Sometimes my heart felt like it wanted to come right out of my chest when I'd do something simple as make the bed, or clean the bathroom, or sweep the floor. Even walking a distance would get me so exhausted. But naps always helped me (and they still do!), or just resting for a bit before continuing on. Somehow I made it. Somehow.
When I was in 8th grade, I used to go down to the 1st grade classroom to help the teacher while my classmates had gym class. All the times I helped out made me realize how much I liked being in the classroom, and my dream of being a teacher was born. So after high school, I went to college and got my BA in elementary education. After graduation, I subbed a little bit before getting a job at a daycare as a teacher. Two months later, I got a job as a teacher for Headstart. I fell in love with preschoolers! Well, mostly! lol I really liked the job for the first couple of years, but in my third year, I found myself a lot more tired. Of course, I was going back to grad school for my master's degree, and I was also dating someone and going out a lot on weekends. That third year at Headstart, I kept getting sick, and not just your average head cold. I had double pneumonia, bronchitis, and was on my third respiratory illness when my PCP told me that I must quit my job. That was 10 years ago today. Although I was so upset about it back then (what 24 year old decides to retire at that age??), I look back and consider it such a blessing. If my doctor hadn't told me to stop working, I would've kept pushing myself and been in worse shape than I was. I know how terrible she felt at first telling me to quit, but even she tells me today that if she hadn't, I might not be here.
I was at a loss when I stopped working, but I decided to finish my master's degree anyway, and I'm proud that I have it. After that, I didn't know what I was supposed to do with myself. I had started going to the Cleveland Clinic in Ohio to see specialists, originally for a lung transplant evaluation. My first trip there included a lot of tests, and I was told to start Coumadin (a blood thinner) and to wear oxygen 24/7. I bawled my eyes out most of the ride home. Oxygen all the time?? I couldn't bear that thought! But, there wasn't anything I could do about it, and it took a very very long time for me to accept wearing it out in public. Nowadays, though, I couldn't care less! I wear it and forget I have it on most of the time until someone (a curious old person, an inquisitive child, a rude busybody who just has to know if I smoked) reminds me that yes, plastic is running up my nose! But I know that it helps me, so I wear it, and that's that!
Subsequent trips to Cleveland started my discovery of exactly what pulmonary hypertension was, and everything that went along with it. I grew up going to my cardiologist just to make sure my heart was doing ok, but I had no idea what PH was all about. I only knew the name of it, something I couldn't always manage to say as a kid. So, I started a medicine called Tracleer (bosentan), a pill taken twice a day. I found out about the PH Association, went to their website, and spent over a week in tears while reading the message boards because there were other people like me out there! They knew exactly what I felt like growing up, all the symptoms, all the frustrations, all the feelings that I'd had a lot as I continued to survive this dratted disease. It was as if I'd found my 2nd home! This was in 2003, and I continue to be an active participant in the PH community, both on the boards and the chatrooms as a moderator. Facebook has currently become a huge boom for PHers not only around the country, but around the world. Being able to connect to others who completely understand what you're dealing with makes the disease a smidgen bit more tolerable. In 2007, I started Revatio (Viagra!), and the combination of Tracleer and Revatio have been working pretty good to keep me stable. Oh, I still have days that are bad, when all I want to do is just spend the day in bed and rest, but they aren't constant anymore. Adding pulmonary rehab to the mix in September 2008 really made a huge difference as well. Wait, exercising?? After not taking gym or playing sports all my life, I could exercise?? Yes!! I'm not running miles, I'm not doing hard core exercising. I'm doing what I am able to do at my own pace: walking on the treadmill, lifting 6lb weights (I started at 2lbs), going on the stationary bikes, and using the arm cycle machines (like a stationary bike for your arms!). I started out really slow, and I've been able to build up over all this time to actually have some pretty fabulous muscles! Whooo hoo! Rehab has really helped me with what I'm able to do, and I hope that I can continue doing it forever!
So, what exactly do I do with my time? Well, I make jewelry. That started out of necessity when I couldn't afford buying Christmas gifts for all of my friends one year. I made bracelets with beads I had from another project, and after that, I started making necklaces, then earrings. I've changed the way I've made things over the years, much better than when I was starting out! It keeps me busy, and I've acquired quite an addiction to glass beads! I also run a PH support group in my area, because the closest one to me at the time I started it was back in Cleveland. I didn't want to travel 4 hours just for a meeting that was a couple hours. I figured that there were other people in my area who had PH, and would probably like to meet people who they could relate to, so I began the group. It's been a blessing to me, and to the many people who have attended meetings. I am able to spend time with my family and my friends when I can, and I'm so thankful for that. I am also extremely glad that when I DO feel like I'm having a bad day, I can rest instead of working and making myself worse. I keep myself busy and I'm just happy that I am still here. My biggest goal right now is to turn 40. I want a huge party, and I'd like to raise awareness of PH with my celebration. I've got 5.5 years to go before this happens, but it's better to plan ahead of time!
So that, in a nutshell, is my story. At least my life so far with PH and congenital heart disease. There are so many more aspects to my life that make me who I am, but the biggest reason I write nowadays is to showcase what it's like living with a disease that knows no boundaries. If you would like to find out more about PH, please go to the PH Association. PH doesn't care who you are, if you're man or woman, a child or adult of any age, the color of your skin, it can strike anyone at any time and for any reason (and sometimes there isn't a reason). Awareness is the key to get this disease more well-known, because right now, many doctors don't even know what it is!
Thank you for reading to all of you who come across my blog. And please, feel free any time to say hi. :)