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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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Start Giving Patients the Freedom to Heal.

Barely one month after being released from my hospital stay in February of 2017 someone messaged me that I was “doing it wrong.” Those words exactly, and that I needed to reflect more positivity. Resentful is an understatement that I felt within that moment, and every once in a while I still allow this intrusive message to continue to plague my thoughts. Yes, I have given it more power than I should, but the truth is that the message she sent actually does have a lot of power. In my weakest moments sometimes remembering that message is a deep cut.

You see, this hospital stay was an emergency admit, in the middle of peak tourism season in which I had just opened a store only a month prior, oh, and I sold flowers and Valentines Day was fourteen days away. Did you get all that? Exactly. I was trying to run a store almost four hours away, in severe heart failure, and I was in the ICU having a specialty team put a tube in my chest that would remain there forever. As far as I could see (which was through a filter of complete panic) my life was over. The doctors told me I was dying around the time I was finally doing something I had dreamed of, and it was interrupted in the most intense way. I was hospitalized eleven days; eleven days of constant beeping, cardiac alarms, palliative care, counseling, transplant doctors, and entire team staring at you and taking notes at least two times a day. That doesn’t include the insane pain, crying, nausea, and trauma. Eleven days I laid there barely making it out in time to immediately turn around and have everyone’s Valentine flowers done. I was extremely sick; I had lost around thirty pounds, was still throwing up around three in the morning every night, and being a new IV patient which includes learning about the machine as well as the medications attached to me. I was still extremely angry that I would get up to do something and would feel my pump slam down behind me, tugging my tubing. Or that showers now meant maneuvering tubing, and feeling the warm water hit a bunch of plastic taped to your chest. The reality was setting in that I was finally attached to a machine – my worst fear. My invisible disease was finally visible, and I was on the last leg of therapy – one step closer to organ transplantation. Okay, I’m done with the existential thoughts but you get the point.

I am just now comfortable with IV therapy…a full year and a half later. I finally mix seven cassettes to put in the fridge so I am changing my medication on time. I am finally taking care of my central line after losing my first. The road is just now gentle because that’s how long it took to accept my pump, work out all the technical kinks – and I am not alone. A lot of us PH’ers struggle with IV therapy, and years later it is common to still have a flood of emotion come over you causing you to be self-conscious about your disease, your body, and to be angry or sad. It is completely normal to suddenly “see” your pump for the first time in forever or to watch people swim and scream “WHY” inside your head. This will continue – not most days but it will happen at least one of those three hundred and sixty-five.

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The point is, when I received this message I was only one. month. out. Need I repeat myself but barely a month – that’s not even the amount of time you need to even recover from the new medication. Your entire body has been invaded and is changing among a very powerful life altering drug running through it twenty-four seven. Your entire world has been shaken by trauma, paranoia about your own death and future, and you open your messages to see “you’re doing it wrong.” This is nothing against this person – because she is a good person, but to this day those words are penetrating and wrong themselves. However, they awoke me to the reality that she speaks for the common voice and attitude in America – and that’s a damn problem.

We often are so bothered by things that we can’t comprehend so we blanket them. Patients ourselves do it some time before we truly develop an understanding of our disease. If you have something serious, invasive, life threatening, or mortality awareness in general about you – you are blanketed, unfollowed, or reminded that you need to be happier. Instead of people volunteering to visit you in the pits of hell, they decide to pretend it doesn’t exist. The pain, and trauma you lived through is really a happy story – and you should be thankful. YES, IT IS but it is NOT RIGHT NOW. The right thing at the wrong time is still the wrong thing. Things need to be felt, acknowledged, and sort through. In a year it is a happy story, and a transcendent story of personal growth and pain, but right now it is barely escaping with my life. It is not okay to rush any kind of healing. It is not okay to pretend someone’s pain doesn’t exist because it makes you uncomfortable. We should be uncomfortable quite often in life – that is if we want to keep moving forward. Things that count, helping other people, feeling all the feelings often comes from a driving force of being uncomfortable, and wanting to change that.

Being diagnosed incredibly young has been a process of learning about mental health, trauma, and where I fit into in this society. A society that is obsessed with perfection – we can’t deny it. We would gladly drop a thousand dollars at Hobby Lobby making our home amazing to take Pinterest pictures for our Instagrams to prove to everyone how perfect we are. We all do it – all of us deep down wants to be a Pinterest perfect woman. Being a physical reminder that things are quite imperfect, medical bills are piling, and coverage is being threatened can have you cast out of a lot of situations when it comes to fitting into society. It is extremely hard to find a place for yourself when your reality clashes with their ideals. More and more I hear about PH’ers horrifying experiences of being corrected, made fun of, not welcome, and overall just not supported.

I get that we are unrelatable in a lot of aspects. Our pets are our only children, we post pictures of mixing our medicine, and maybe our stories on Instagram consist of hospital stays with the caption being a slight mental breakdown. We are literally looking death in the mirror everyday and trying to fight and cope with it. In a country where we have been deemed “too expensive” for medical coverage, and a “burned down house” AKA hopeless cause – difficult is an understatement. We would just like a little time to vent and be heard just like you get to after spilling coffee down your front on your way to a meeting with screaming kids in the backseat – only for us maybe it’s congress messing with our healthcare rights or our copayment is $4,000 this month. We just want to vent to our friends then move on to shopping at target too.

You can think we are doing it wrong, you can be that outside perspective and see that we are suffering, and you can do two things; you can send us a message saying “you’re doing it wrong.” OR you can send a lunch invite, and over a great meal ask, “How are you doing? How are you coping? What hobbies do you do for yourself? What was it like? Wow, tell me more about that?” like a human would. It’s really that simple.

Please save your criticism for real problems in this world, like healthcare, racism and misogyny. Please save your lousy Facebook messages, and trade them in for connection. We just need time to heal, real connection, laughter, company and we want to be heard – we are tired of being silenced by America’s expectation of normal.

-haley.