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It Was Worth It.

“I thought no man would ever want to touch me again.”

Nakeyah and I giggled on the phone the other day over existential crisis thoughts, tubing issues, transplant and relationships. One of the most important things I finally chose to do was to start making connections with other young women with my same disease. It lightened the sense of alienation, and it truly gives you a feeling that you have finally found your own species. You can exchange insurance rants, your wishes to be a mom, and your paranoid thoughts with people who will not judge you for not being “positive enough” but instead collapse with you as they know exactly what roller coaster you have been unwillingly placed on.

Nakeyah writes “I have met quite a few women in the community that I connected with on a positive and spiritually growing level. We support one another whether it be helping each other understand information, or supporting one another through difficult times or experiences. It is great to be able to talk to people who actually get and understand where you are coming from.”

It is not uncommon for patients to avoid IV therapy – almost to the point of risking their lives. Why? Simply because what people will think of them. That was my story – living up almost 9,000 feet in altitude and avoiding IV therapy like the plague against my doctor’s advice. “Why?” she would ask. Simply put, for the one hundredth time, I didn’t want to be attached to a pump. In the days after it was placed, laying in the hospital, I told my mom I did not want to go back home. I didn’t want to be around people again, and I didn’t want to be around men. I had already been with men who judged me for not being able to birth their children – what about now? I was worthless to the human race.

Having a machine attached to me has been a process of regaining self-confidence whether it is through the exposure of my chest, or rocking a cute ass fanny pack because the fanny pack is truly freedom for anyone with a pump. A year and a half later, I will always be self-conscious in some situations. But I have grown into my necessary medical care despite it’s trials of trying to walk around home only to hear your gameboy device crash behind you, or the famous “what happened to your chest” questions. Nakeyah joins the army of young women with Pulmonary Hypertension who simply put – are bad ass,  beautiful and sexy.

“I struggled so much with having to be connected to a machine 24/7. My self-esteem dropped dramatically and I feel that it made me over think how others were looking at me. Its tough being young and still having to deal with the pressures of fitting in with your peers, and the world when others are so conditioned to judge others based on their looks.”

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“When I was about 14 years old, I began experiencing episodes of shortness of breath, dizziness, sweating and feeling as if I’d faint whenever walking up stairs to go to classes. I never understood the issue, but I knew something was not right. I told my mom about my concerns and she brought me to my pediatrician. I was told over the course of the next three years that I was overweight (I was about 160 lbs then.) I’ve suffered losing myself and trusting in myself. People are conditioned to view sickness or sick people a certain way.  When you have an invisible disease, it is difficult for some to believe in you or your day-to-day struggles. I have been through numerous situations with doctors, nurses, paramedics, and other healthcare professionals that do not understand the disease and try to discredit my word, or say I am not as sick as I say I am – simply because they don’t understand the disease. I had to go through years of rumors, lies being made up about me and judgment all because others don’t get what Pulmonary Hypertension is. This has taught me to have thick skin but also to trust myself and not try to prove myself or what I am going through to others.”

Ladies – and men – who currently have a tube in your chest; do you remember your final pre pump days? Do you remember how terrified you were when you realized that doing the simplest thing sent your heart rate sky-high, intense pain flooded your body and you literally suffocated? We will never forget that pain. The pain of literally starving our bodies of oxygen. Coming home from the hospital was paranoia city trying to trust that my body could simply walk to the car without trying to die. To feel the weight of our pump but the freedom in our chest made this life changing and appearance altering treatment worth it. Sean Wyman texted me in the hospital in my spiral of hatred towards the pump, “but you are alive. This will be worth it.”

“It used to be no man is ever going to touch me, and now it’s you’re lucky I even let you touch me.” Nakeyah laughs. Her photo above is proof that we are living in the new world where old ideals are dead. Disabilities have become abilities, and people attached to machines are people.

It. Was. Worth it.

-haley.

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I Am THAT Sick. 

“Do you feel like you have quality of life?” was something asked by my palliative care nurse yesterday. Honestly, who could call this tube and machine attached to me “quality?”

I have been writing for almost five years about living with a terminal disease that is masked by this perceived normal, if you will, and the absolute frustration of everyday ignorance when it comes to people respecting and believing your reality. We are made out to be drama queens, negative, “too much”, and just about any other word humans would like to use as a buffer for their level of comfort. It’s an isolating feeling to know you are surrounded by people who will slap a prayer on a Facebook status, but will indirectly do what they can to keep your “suckage” far away from their steady life. It’s a dull feeling to know that you live among people who are contributing to the lack of early diagnosis problem by once again thinking you are just being dramatic, or negative. Patients literally die because they are told consistently that nothing is wrong.

Late January, death was on my mind quite frequently. My “end of life” wishes, and how they might find me in my home. I was having tachycardic episodes just even trying to pet Rocco, and found myself laying in the floor more often than not trying to calm my breathing, and move past that suffocating feeling. I knew what was coming; my invisible illness was working its way out.

After an almost two-week hospital stay, countless mental breakdowns, bruised arms, bruised hands, new nurse friends, and “mixing classes”- I walked away with a tube in my chest attached to a little machine. I never realized how many v-necks I own, or tops that lace up until I noticed a little white patch peeking out in the mirror. I have attempted to walk across my living room countless times before feeling a little tug reminding me that I am permanently bonded to this anchor. I forgot to enjoy just seeing my necklace resting against my bare chest, or how amazing my weird habit of rubbing my collar bones felt in which now my right one has a tube stretched over it.


Quite shockingly, the amount of “I didn’t know you were THIS sick” messages I received is more sickening than my heart failure in itself. I guess people really do want this justifiable evidence that you are in fact suffering which I guess seems understandable, but; while they see tubing they still don’t see the bills pile up for the expensive maintenance that is required to keep you alive. While they see your pump now they still don’t see you spending enormous amounts of time mixing your medication just right so you don’t accidentally kill yourself. While they see grumpy Facebook updates they don’t feel the mind numbing reality of laying in bed, throwing up, running to the bathroom every five seconds, and doing what you can to manage your pain level. While they see your spotty red rash along with your chest they don’t see your mini hospital that is quickly swallowing your cute home.

Congrats. You have your physical evidence. I am sick. My body is now reflecting its insides – and you know what? Despite whether Pulmonary Hypertension was visible to you or not, it has been this way for seven years – since day one of my diagnosis. It has always been this level of life altering since the moment they told me I did not have a good chance at a quality of life for long. It has been this horrible since the first echocardiogram when I was eighteen, or finding out I could never carry my own child. Open your eyes, listen to people, and gain some perspective on what sick means. The thought, and fact that you are stuck inside of a body that cannot carry you across the finish line, and that will cost you millions of dollars is realistic. You are allowed to feel this way; do not minimize your pain for others comfort.

While I realize I am NOT my disease, I find myself enveloped within it quite frequently. Instead of fighting it, I am making friends with it whether you can conveniently see that or not.

-haley.