PHighter Friday: Rebecca

My health journey started a long time ago. 25 years ago, to be exact. I was three years old, and diagnosed with Stage 4 Embryonal Rhabdomyosarcoma. To summarize: Tumor in my abdomen. 5% chance of survival. The treatments I endured have long ago been deemed "inhumane, and no longer practiced on humans." I received experimental amounts of radiation, and chemotherapy. The doctors told my parents to expect long term side effects of said treatments, but were unsure what they might be.

Some side effects were: intestinal issues, weak teeth, extreme fatigue, infertility, and joint problems. I've lived my life in and out of hospitals, and doctors offices. I've had to become very in-tune with how my body is functioning.

Fast forward to April, 2015. I developed a case of bronchitis that just wouldn't go away, no matter the amount of antibiotics I took, or rest I got. I noticed that my heart was beating hard all of the time, and I was breathless walking from my living room to the bathroom. I couldn't speak a full sentence without gasping for breath. After months of different doctors, and tests, including a right heart cath, a new diagnosis entered my life. June 5th, 2015: Idiopathic Pulmonary Hypertension. My doctors can only assume it's from the radiation I got as a child. At the time of diagnosis, I was told I was at Stage 3. I was put on Sildenafil, Opsumit, and blood thinners within two days of my diagnosis. I had to quit my job-I had been a nanny for 6 years-because I couldn't even walk up a flight of stairs, let alone chase after kids.

I felt my entire world crumble beneath me. The first few days after the diagnosis, however, I felt relief. I was almost blissful. After months of doctors telling me I was fine, there was nothing wrong, it was in my head-one even told me that I should see a psychologist-it started to mess with my mind. "Was I fine?" I thought? "Is this just how people feel all the time, and I'm being whiny?" So to receive a diagnosis: I was happy. I threw myself into learning about this disease, it's outcome, the medications, the stories. But eventually google stops giving you answers you didn't already know, and the dust settles. In the weeks since I've been diagnosed, I've experienced sadness, anger, guilt, frustration, and fear. Sometimes all on a daily basis.

These days, I try my best to not panic or worry about the future. I spend my days with my cat, and baking. I've had to learn to allow myself to not rush projects, or cupcakes. But to take my time, rest often, rely on the help that people want to give. I'm only a few months out of the diagnosis phase, so I wholeheartedly believe that my health can only go up from here, now that I have an amazing doctor, and medications. I use oxygen only at night now, instead of 24/7, like at first. 

I joke that I've been given a "lemon" of a body. I feel as though the insides of me are barely held together somedays. And there are days where I think, it's impossible. It's impossible for one person to fight so hard, to endure so much, to receive blow after blow. But usually after a good nap, and an even better cry, and a hug from the world's most amazing husband, I brush myself off, and tell myself that tomorrow is a new day.

Pulmonary Hypertension may have been a stumbling block for me this year, but it won't slow me down forever.

I can be followed on Instagram at rlidenberg, or on my blog: phancyfree.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