Since the start of the new year, 5 members of my Pulmonary Hypertension community have passed away. The most recent was a woman whom I had been emailing over the past few months. She was younger than me. She has a little girl and a husband. Last year, there were several deaths as well, but it seemed like the majority were “older”. I know that it is just as sad when ANY one dies, I am not discrediting their deaths. It just hits home really hard when its someone near my age.
A lot of times I try to ignore the fact that I have a progressive, ultimately, fatal disease. I try to live my life everyday as I used to before my diagnosis. I put on a smile and carry on. And honestly, I AM truly happy. My smiles are not fake. However there are times that I just want to cry. Over the silliest things, that I used to take for granted. When I see people hiking, running, doing CrossFit, pregnant women, people playing basketball, and eating a huge cheesy, greasy pizza. Or when see a set of stairs and I start to panic while looking around for an elevator or ramp. Then I get anxious wondering if people are going to think I’m lazy because I’m not taking the stairs. I look healthy, I should be able to take the stairs, right? Sometimes is the simple day-to-day things that bother me, and I won’t lie, I have cried over them. Doing laundry, cleaning, playing with my kids. These things exhaust me at times. And I can feel my heart overworking. This isn’t fair. But it is what I have been dealt and I am going to take this challenge as I have everything else in my life. I am going to overcome it. This doesn’t mean I will be cured, there is no cure. But I will overcome. I will not let this disease rule my life.
I am not my disease. I am not Pulmonary Hypertension. I am me.