PHighter Friday Follow Up: Haley

In almost just a year and a half since I last wrote for Miss Serena (Haley's previous post can be found here,) Pulmonary Hypertension is quickly becoming a closeted thing in my life. Like a favorite sweater or coat you buy, wear the hell out of it, and after so many years it spends more time in a closet because you're somewhat discovering other fun coats? That's currently my situation.

I don't know how I've had such a great recovery, but I really do believe that recovery dwells within the mind, and spirit; The body will eventually follow. I've gone to therapy, explored medications (whoops - not such a great idea), explored natural healing for my mind, and I really do believe that because I was so focused on how I felt mentally and spiritually that my lungs are now keeping up quite well. While Pulmonary Hypertension will always be an unfortunate huge puzzle piece to my life it doesn't necessarily take the spotlight anymore, and for me that is quite healthy.

Knowing this information, and craving change, I moved myself up into the mountains and into high altitude as well. I came armed with my medication, oxygen, and it's been lovely. While some might think it's negative to have to slow yourself down because of your disease, I think it's wonderful to force myself to slow down, and catch my breath. Life up here is breathtaking in so many ways - not just because of the low oxygen, but because of the beautiful scenery, and all of my lovely animal friends (deer, and more!) I've pushed myself into jobs that are extremely physical, forcing myself to really break out of boxes that my disease put me in. While I know my limits, I'm discovering silly ones that my mind set for itself; something I believe we all unintentionally do. I love visiting my doctors, and watching the surprised look unfold on their face when they see that my breathing is almost normal, and I'm "looking" better.

As a patient of a rare disease, it's hard to force yourself into change. You get used to your doctors who know you inside, and out (quite literally), supportive friends, stores that you can shop in, pharmacies that you may really enjoy the customer service there...it's just hard to pick up and move. Not only do you have to move your furniture, but you have to scope out a whole new medical area, and if they will even be prepared to deliver what you need. I moved to a state that is so behind on two major things; education and medicine. Being an educator and seeing some of the schools in my surrounding area is just cringe worthy. Education is not pushed because of poverty, and how families function daily. Also, the nearest hospital is a little over an hour away from me, and even then it's a tiny hospital that barely has the means to go. It's been quite challenging in both these areas of my life to adjust to these lower standards. However, I love a challenge.

I think my overall theme for these last months of my life has been "challenge". We box ourselves in without even knowing we are doing it, and create kind of false realities of what we can and cannot do because of our disease. Don't be that person. Instead, be a safe person who knows limits, and is careful. A person who also wants to try new things, and do exactly what people think you cannot do. They said I wouldn't live, and I did. They said I wouldn't be able to work, and I have so ridiculously much. They said I wouldn't be able to dance, and I danced my ass off in ceremonies. They said I could never live in altitude, and I'm living quite healthy, and happy. Who knows what is next...maybe I'll soon be on the mountain snowboarding!

We think we know our bodies, and even doctors think they do, but for some reason I'm still the "mystery" patient, as my doctor calls me. Try things, grow, be safe, and actually live. Surviving is no longer an option.

-haley.
phenomenalhaley.wordpress.com

PHighter Friday: Haley

I, like so many other young adults, spent the majority of my high school time impatiently waiting for the "real world." I was tired of high school, tired of being a so-called kid, and my body was physically tired. But, two weeks after my eighteenth birthday the real world came crashing in brutally. I was diagnosed with stage four Pulmonary Hypertension, and was given two years to live. Ahhh, the real world was SO awesome so far.

When diagnosed with something that is terminal, people automatically think you have all this wisdom, you're at peace with your life, and you're somewhat a courageous fighter. We see it in cancer books, on Grey's Anatomy, and other ridiculous interpretations of illness. I spent at least the first year of my diagnosis trying to evaluate my emotions, my lashing out at anyone, and my random crying sessions after doctor appointments. What in the hell was wrong with me? Simple; the picture in my head of what illness is supposed to be, and what it actually is was in the process of tearing me in half.

People really do underestimate and ignore the mental side to a disease. Yes, the problem is in my lungs, which works its way to my heart (causing it to work harder) but it eventually leaves an impression into my actions, thoughts, feelings, and emotions. After a while, you feel like a disease. I would be treating my body for a while, then decide I didn't want to live, stop treatment, and was battling suicide. What was the point of fighting something that would claim a life I didn't even want to keep?

After a broken relationship, and removing certain people from my life, I was surrounded by my family, and best friends only. They were probably just as tired as me because they had spent the past couple of years watching me carelessly throw myself into deaths arms. When I looked into their eyes all I could see was a high school memory of one of my friends in his beautiful casket being lowered into the ground because he had fallen victim to suicide. I remember his parents and friends standing around, and hardly anyone could make eye contact with anyone else because of the perfusing sadness throughout their face. The idea of my family, and friends standing around my casket was unbearable. There in that moment I took my first step into my own sort of mental rehabilitation, and acceptance of Pulmonary Hypertension.

A little over four years later, I'm writing this with oxygen tubes up my nose. Its not the most ideal picture I had in my mind, but at this point I wouldn't, and literally could not have it any other way. Having Pulmonary Hypertension has been a form of art called Mind Over Matter. Mentally, I wrapped my head around this disease and I felt like my body soon followed. My art now has a purpose, my writing has given me a purpose, and I've met countless supporters, people, and had amazing opportunities. Why? Because of my crappy lungs. I really am thankful for them sometimes. It really takes reminding yourself that you have a disease, you are not the disease. On this email sent by Serena, she states, "Statistics are not kind or hopeful when it comes to this disease." Then she asked, "What have you been able to do that you were told you cant?" Well my statistics were given to me in the words of, "You may not live another two years" and that my loves is what I've been able to do; live.

-haley.
phenomenalhaley.wordpress.com