Wednesday, April 04, 2012

Health Challenge Day 4 - I Write About My Health Because....

Reflect on why you write about your health for 15-20 minutes without stopping.


When I was growing up, I was the girl who had something wrong with her. I knew I couldn't keep up with my sisters and friends, I knew I couldn't participate in gym class or sports, and I knew that something was wrong with my heart. I knew that I went a few times a year to the doctor to make sure my heart was doing ok, but I didn't fully understand the scope of my situation as a child. I had two holes in my heart. I got so tired just trying to make the bed, or doing some of my chores, or running around the neighborhood playing hide and seek. That was the extent of the knowledge of my health situation.

When I got into college, I still didn't really get what was wrong with me. By then I think I had only heard once or twice that I had pulmonary hypertension. I still have the handwritten piece of paper that my cardiologist gave me at some point that told me what I had: atrioventricular canal defect and pulmonary hypertension. Oh goodie! A name. But still no clue as to what it was! I just kept going to my appointments to get my yearly (sometimes more than that) echoes to make sure my ticker was working fine. Other than that, my main concern was getting my education degree and having fun with my friends.

College graduation led to an eventual job teaching preschool. I loved it, but my body slowly started showing signs that it wasn't having all that much fun because the job was so physically exhausting. Not only were the kids mentally challenging sometimes, but they germ factories!! Getting sick was never fun for me anyway, but when I became part of a germy environment, I got sick regularly. My classroom was also on the 2nd floor, which meant that at least five times a day, I needed to climb four sets of stairs. STAIRS. Going down is always easy, going up is a different story!! So by the time I was in my third year of teaching, my health had about had it. I was on my third major respiratory illness when I was told that I needed to quit by my doctor. Devastating news for me at that time, because really, who at age 24 thinks about retiring then and there? However, looking back at it now, it was a blessing!

I stepped into the world of pulmonary hypertension when I was 28. Backtracking a tiny bit...after I quit working, I spent a lot of time trying to get my health back, and trying to finish my graduate degree. My lungs began bothering me a lot more, with lots of pressure in my chest and even more shortness of breath than I dealt with as a kid. My cardiologist even tried inhalers for me, because I really thought I had developed asthma. Just goes to show how little I knew about the disease (and apparently my cardiologist, too). So during a visit to my PCP in 2001, I completely bawled my eyes out because I just wasn't sure what was going on with me. She told me she was going to refer me to the Cleveland Clinic in Ohio, for a lung transplant evaluation. Whoa. That scared the crap out of me! I went from knowing I had a heart problem to realizing my lungs were in such bad shape, and I had no idea why. It was a scary time for me!

I started going to Cleveland in 2002. We made many trips there, every three months, for the first almost two years. I had lots of tests, and the first time I went, I was put on Coumadin (a blood thinner), and oxygen 24/7. I cried all the way home. That certainly was something I needed to get used to wearing all the time! I never really had all the tests for a lung transplant evaluation. Pulmonary hypertension was brought up many times, though, and I learned so much more about it once I began Tracleer in October of 2003. My first shipment included a flyer for the PH Association website. Once I logged on, my world changed. It was the first time ever in my life that I read about others dealing with everything I've been living with my entire life. I spent the first few days reading the message boards and crying because I couldn't believe it. I wasn't alone anymore. I could relate to people who could also relate to me!

In the almost 9 years since discovering the PHA, I have made it a point to try to educate people about PH. After several years of participating in the chat rooms, I became a host for two of the chats during the week. I started a support group in the Buffalo/Niagara area, because there wasn't anything closer than that. Over a year ago, I became a PHA Mentor, helping people who submit questions on the website about a variety of PH topics. I even post things on my Facebook page about PH, because I find it so important for people to learn and understand this complicated illness.

So why do I write about my health in my blog? While I don't always focus on my health, I find that a personal journey is so helpful to others who want the emotions that come with an illness, and not just the facts. And I also write because I want others who are lost with this diagnosis to feel not so alone, like I did during my younger years. I write because I find it helpful for me to vent sometimes, and others living with the disease might also feel the same way. I write to educate people. The random comments I've gotten over the years from someone who came across my blog and told me they were so happy to have found it just give me validation that I can help people out there who are trying to make sense of living with PH. It makes me rather happy!!

3 comments:

Stacey said...

I didn't realize you weren't given a stable diagnosis until you were in your 20s Colleen! That must have been SO HARD to not know what was going on! Good for you for taking control and educating others - KUDOS!

Livin' My Life With PH! said...

Colleen, you are an inspiration to myself and to many others with chronic disease. You show so much bravery and hope through your postings, chat and the love you have for all us PH'ers! I have grown to love you as a friend and I look forward to seeing your posts on FB and seeing you in PH chat. It is sometimes lonely in the illness world and you make so many people including myself feel whole again in a world that cannot possibly understand what it's like to be sick! Please continue to write about your health and illness and all the things that life brings because it brings us all hope! Love Jessie, fellow ph'er and friend.

Nelle said...

I was thinking of what to say but when I read what Jessie said that is exactly how I feel. Especially It is sometimes lonely in the illness world and you make so many people including myself feel whole again in a world that cannot possibly understand what it's like to be sick!" You have inspired me and I consider it a priviledge to know you.