How Convenient.

Six years later, and the thought of my upcoming echocardiogram (and other tests) to see if my new treatment is working is still unsettling. In a couple of days I will see my heart glowing on a black and white screen not knowing it’s fate, and I can always tell when the sonogram tech is fresh because they possess no poker face. After that I’ll walk repeated laps for six minutes in a hospital hallway to see how far my oxygen dips, and of course they will jam a needle into my arm to file away my blood in multicolored tubes.

You see, I have been doing this since I was eighteen because that’s when I was told I was dying. Eighteen is when I was being asked what my end of life decisions should be, how I needed to pay for new costly medication, I can never conceive a child, and everything I thought I knew had been completely wiped out. I will never forget all the “we love you”, “praying”, and other types of comments. The phone calls, and the overall “new” concern that fades. People return back to their lives, their normality, and their family…and yes, I’m still dying.

staygold3Dedicated to the lovely Jenny Janzer

I seem cold-hearted to many and even brutal in my attitude, however what you don’t sense is pure exhaustion. While you see my disease occasionally and you put a sad face on a status I made about my anger – I live with Pulmonary Hypertension daily. I don’t have a choice to hide anything, or forget about my lungs. I instead have to take medication, endure its side effects, wear oxygen, drive to the doctors which means appointments at the hospital, and of course the impending task of hearing how far my disease has progressed. Others who are usually the first to criticize get to kiss their children, go for a run, and probably haven’t been to the doctors in over a year. “Life is unfair” someone told me. I mean, really? You feel comfortable saying that to someone who is battling their own body, who blames them-self, and fights unimaginable grief?

Just because you do not experience, or relate to my pain does not mean it isn’t real.

Just because you do not feel my pain does not mean you get to label it for your convenience. The only label I choose to wear is “fighter.”

“She’s crazy, she’s intense, she’s just weird.” No, she’s just fighting death at twenty-four, and trying to cope with that while still alive.

-haley.

A new “song of the week” is up! Take a listen.

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Yes, It’s Traumatic.

Once Pulmonary Hypertension was brought to my attention, it’s been nothing but a life altering path I did not choose, but was forced to take. The public has a notion that a disease is sitting in a doctor’s office a little more than once a year, and maybe (maybe) sometimes it gets in the way. When a disease arrives, it brings all of it’s baggage: insurance hassles (or life terrifying moments when insurance threatens not to pay for anything anymore), financial struggles, side effects of medication, unplanned trips to bigger and better hospitals…the list really could go on and on. We learn of something new all the time, and with each changing phase in life brings a new set of baggage from this disease. The load is burdensome. But, the most important, ignored, and heaviest one? The mental, and brain health struggles.

I have been living with Pulmonary Hypertension well, since I can remember, eleven, but diagnosed six years. The past two years have been exceptionally difficult with a prescription drug addiction (doctors pushed Xanax rather than looking into a deeper problem) and I felt like I just couldn’t focus. I was so distracted by pure anger, anxiety, and it felt like every emotion I had tricked myself into believing was not there finally rose to the surface. I tried to fix it myself by throwing away my Xanax, and I picked my life up and moved. Change felt amazing, it took the edge off my problem, but deep deep deep in the background I still could not get control over anxiety, depression, and rage. Lots of it. Finally, I stepped into a therapists office surrendering to my “I will pick myself up” attitude. After a lot of sessions, his biggest concern with me was my PTSD, and severe anxiety. My what? I knew I had anxiety, but PTSD was in my mind someone who survived an attack. “Well, technically you have.” That was his response.

“Chronic illness is traumatic on both levels–the physical obviously, but also the mental and emotional. People who are ill very often display classic symptoms of post-traumatic stress, even if they don’t have the full-blown disorder.” -Psychology Today

“Individuals experiencing chronic diseases have been studied with regard to depression, anxiety, and a variety of coping maladaptions, but negligible attention has been given to the PTSD potential of chronic disease over the life course.” – ncbi.nlm.nih.gov

As stated in my ignorance, I had not even given consideration to the fact that PTSD lingered outside the soldiers category; And the problem with this is that most of the world sees it this way too. We have not yet put together that a majority of chronically ill patients are also suffering from Post-Traumatic-Stress-Disorder because being told “you have an incurable and terminal disease” is trauma in itself. Not including the daily alterations we must make to maintain a new normal that we did not choose, on top of surgeries, and bad news. The dangerous thing about this trauma? We are living inside of it everyday. Having undiagnosed PTSD was not even knowing of its existence, not knowing I had triggers, as well as not being able to identify my triggers, and having no idea I was suffering intensely mentally. Instead I was telling myself that “I was always going to be this out of control”, “Never going to find an escape”, or maybe “I needed to kill myself.” Yes, those are real thoughts in the middle of an attack. They aren’t comforting are they?

“But for some, it might be better not to shrug off problems, but rather to acknowledge the dark side. By recognizing the traumatic aspects of illness the ill person can potentially break through denial, modulate obsession, and lessen rage.” -Psychology Today

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Original art by Haley Ann

 

Since I’ve opened my mind to the presence of my PTSD diagnosis I’m not going to say it has become easier. However, maintaining and openly dealing with the trauma, and triggers has lifted some weight. Now I will be able to communicate to health professionals about how I feel in the moment rather than becoming enraged, and shutting down. It has opened a door in communication that I did not know I had, and developing an understanding towards myself. The best part? I am picking myself up. I just needed someone to show me how.

-haley.

Please understand that mental health is an invisible disease just like PH. Your brain is an organ, and it deserves it’s own upkeep. If you feel like you are suffering then please find a professional to help your pain.