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
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