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.

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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.

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.

Stay Gold.

Don’t meet others expectations for you. Don’t expect anyone’s understanding towards your suffering, and do not apologize for your pain. Do set your own goals, and meet your own expectations for yourself despite what society wants for “you.” Do feel your pain, acknowledge it, and do not hide your suffering. Stay Gold to what you are, what you feel, and what you do. Stay Gold to what you need, and what you want. Stay Gold to all those little things that appear shattered and broken in your mind, but so delicately and warmly reflect you.

Stay Gold to you.

-haley.

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Awareness IS Power.

I guess you could call me a realistic type of person; for those of us who say that we often border the “negative” side to life. We are hushed, scolded, and covered up while others keep talking about their blessed life, and glare at humans who have an outcry. That’s fine, and all well for you, but my voice and my passion does not exist without a drive…and what drives me are the faults I have been born into. It’s okay to say that. I have a very faulty life. What makes it okay to say that? Well, it’s very hard to keep endless anger and pain locked inside of yourself. My organs are heavy from a daily battle against themselves, and quite frankly, I refuse to let them swim in a secret pain so that others may continuously live a life of comfort.

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The world is in a very weird, and groundbreaking place – can we all agree on that? I think because of the power of social media, life experiences, and just plain intelligence that people (and definitely our kids) are coming in tune with an “awareness.” They get political issues, social issues, climate issues, personal issues, drug issues, racial issues…all of the ugliness delivered to their LED screens, or experience this in their daily life. I feel that America’s new generations are creating a voice for themselves on racial issues, political issues, women’s rights, and yes even healthcare issues because they want to see change. All of the not-so-comforting news that the world has tried to lock away in some secret closet is finally exploding because of the want for change, and awareness. While having your head in the sand might sound lovely, appreciating and trying to help others pain is more rewarding. With awareness I feel it creates intelligent, cultured people who will connect to others easily and form a genuine respect for another persons’ life. A fabulous example of this? Humans of New York. Hearing the struggles behind ordinary faces in turn creates a sea of emotion in us, and a connection to our fellow beings.

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I will not hide my anger, or pain for your comfort. Yes, I will try to be positive while being realistic. I want America to see what such young/ordinary looking people with an invisible illness do daily just to breathe. I want everyone to open their eyes, and mind to what a person really feels with a terminal illness – not just what books and movies let you think. I want the world to see how much companies from movie industries to insurance companies are profiting off of sick beings – including children. I want people to be aware.

Awareness is knowledge. Awareness is power. Awareness is respect. Awareness can change anything.

-haley.

 

Hear what I’m currently jamming to under “song of the week” 🙂

Close the Fucking Curtain.

Yes, I tend to be a closed off person. And yes, most of the time I can’t be found because I’m tucked away with Rocco. I can only handle so much person to person time, and long for the moments I come home to only a little black cat. With that being said, I feel like it’s somewhat a great time to be alive (eeehhh?!) for introverts because thanks to companies like Buzzfeed, we can now scroll through posts that point out the hilarity in our non social-ness making us feel just a tad bit better about our habits.

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While I’ve always enjoyed my introverted side, I at one point had no problem being an extrovert. I was on stage in pageants (yikes) competed all over the place in dance, and performed many many recitals. The stage was actually quite comfortable. However, this whole disease process has yet again altered my mind and spirit in ways that I didn’t know it could reach.

I have a problem expressing myself because I feel like I have been passed around (quite literally) for many medical professionals, counselors, advocates, and doctors to see. My life has been summed up into “patient info”, test results, numbers, and expected outcomes. Anyone who ever wanted to know me could sit in on meetings that they have after doctors speak with me, and try to discuss with their team what my next life decision could/should be.

On top of my medical life story, I have doctors in my uterus watching carefully to make sure I don’t pro-create. God forbid I act humanly, one slip up, and it’s over. It gets better this time – not only are my doctors going to have to hear about this, but America too! We have all these lovelies protesting at abortion clinics calling people a whore, slut, or sinner. One slip up, and could I even have access to a safe abortion in America anymore?

Besides my medical background, and uterus issues, I also have people shaving my crotch before surgeries just in case they need access to my femoral artery. I have people moving my breasts out-of-the-way to stick EKG cords all over my body so they know exactly what’s happening inside of me too. I have pharmacies demanding pregnancy tests (which is a federal law) before I can get a refill on my new medication. When you add-on all the questions from innocent bystanders all I am left with at this point is the thought of escape. The thought of just not knowing anyone, or anyone knowing me for just one minute.

I feel exposed. I feel naked. I feel like an experiment. I feel like I have no human rights sometimes, and that I am just a body that everyone keeps poking at. So, please excuse me when I don’t update. Please don’t mind when I’m quiet, when I don’t answer, or yes, when I close my measly fucking curtain door.

-haley.

I’m That Difficult Patient.

Something very commonly overlooked when living with Pulmonary Hypertension is the meaning of “progression.” Or at least when it came to me, my brain has a tendency to forget this huge “one up” this rare disease has on us: progressive…it could always get worse.

When I finally became somewhat comfortable with my shitty lungs, and started writing about them I also adapted a very invincible type of mindset. I had my disease, but I felt like I also had control, something that we don’t have very often with Pulmonary Hypertension festering in our lungs. I ultimately had control over how long I wanted to live, IF I wanted to take my meds, and where exactly this disease could take me. It was great to be feeling “healthy”, to be positive, and to ride out the illusion that I somehow was in control of two of the most important organs in my body that already had a reputation for throwing us all curve-balls.

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My newest specialist is someone who in my eyes is all about preventative care. Her biggest emphasis is something that I, and all my past doctors have repeatedly not watched; the fact that Pulmonary Hypertension is a progressive disease, and it could get worse. I, on the other hand am all about the “now”, and gettin’ it while you can as Janis would say. I’ve moved into a rougher environment (which I don’t, and will never regret!), blown off weeks worth of medications, done things that have negatively affected my body for a temporary high, and basically thought I could keep tucking my disease away for a later time. That’s what happens when you are technically still not accepting your disease – hint hint. After taking the guidwires out, shutting down the fluoroscopy machines, my new specialist informed me that it was a great thing we did a new cath after almost four years. My pressures have not changed after all this time, and my cardiac failure has gotten intensely worse. I may feel “alright” right now, but a year from now could be questionable. Which has now led us to three new medications that are going to feel very “intense” for a while until my body starts responding. Here I sit with my morning cup deciphering through my “now” type thinking versus a future that I’m not sure I want to even keep pushing for. Is it worth it? Or is it just doctors leading us on like a cat chasing a string; am I going to be paying a ridiculous amount of money, and living in pain to only be here another ten years?

Overall, it’s a shock once again to the system. It feels like we’ve re-winded back to when I was being told for the very first time that my heart, and lungs both were a problem. After years of writing about PH, I started running from it. I felt suffocated by what I was creating, and felt the need to tuck it away quietly. It has finally come back to find me, and it’s earth shattering, hopeless, and just unfair all over again.

Despite writing, contests, shirts, and everything else I have come to discover that never have I ever been fully okay with my disease, but will we ever really be?

New song of the week finallyyyyy.

-haley.

Infinite.

Today a healthcare company delivered oxygen to my home, so that I may have enough oxygen to keep my heart relaxed at night. This ugly sore thumb machine sits against a wall of art, and vinyl allowing a disease like stain to spread throughout my life once again. It’s just disappointing.

I have grieved a lot in my life because I am a person who feels things very deeply, and personally. If someone cracks a joke about me, or towards me, I might laugh but I’ll go home and dissect it to fix whatever about me is laughable. I don’t want to make any mistakes, I don’t want to be put on the spot, and of all things I don’t want to be laughable. I have never been able to deal with imperfection; and my first response is anger then deep deep grief.

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Before I was diagnosed I can remember my exact weight. I can remember not even being able to walk across a room, but I wanted to be a “runner” and to lose all this weight I had foolishly packed on. I dreamed of the day when they would fix my breathing, and I could become “normal.” When you’re told that you are basically unfixable, and handed a bunch of medications that cause even more outward disasters, I grieved extremely hard. From the outside it appeared as anger, but really I was just at a loss. My soul, and my body have never matched. Years later, with drinking incorporated, and heavy medication I’ve gained even more weight. I’ve put off college, and stopped pushing myself in a lot of ways I thought I always would have. And today, after all these weeks of constant work I woke up, looked in the mirror, and then over at this stupid machine causing an internal explosion.

Dylan Klebold once wrote in his diary while suffering from insane depression, “eternal suffering in infinite directions through infinite realities” which feels exact with this disease; it crushes my soul taking over with its infinite type nature. At only twenty-three I feel as though I have lived five different lives, and the pain that pushes through my body not only when I climb stairs, but when I see pregnant people is enormously heavy. One domino after another falls in my mind; diseased, disabled, overweight, anxious, and weird. I have fallen victim to my own body in which I am trapped. Why do people fight so hard for this life sometimes?

Suffering from a disease physically and mentally is a daily roller coaster. This is the down side; the side that I am not allowed to show. This side that appears angry, but really, I’m grieving for a life that I do in fact have…

-haley.

It’s Not Fair.

My life has been a series of a whole lot of struggles, especially lately. Life will never hesitate to jump out of the bushes, and knock you to the ground. From dealing with my health, jobs, stressful life decisions, and Rocco’s health you could definitely say I’m exhausted.

When I first adopted Rocco I had just been diagnosed. I had nothing to do, was forced not to work, or go to school, so therefore I decided to bring home a very small barely six-week old kitten. He was hard work from day one: he had fleas, he couldn’t receive any flea treatments because he was too young, he had to have baths, and he also had to be bottle fed. When he slept I slept, and when he was awake he was needing to be fed, and supervised (he wasn’t allowed to walk around because the other cats didn’t need fleas – also he was too small.) For being on bed rest, I was a very busy new “cat mom.” I cried by the end of that first week because I was so exhausted taking care of this super young cat. I noticed though the more he grew that the harder his abdomen got. He was this tiny little cat with this very distended bulging belly.

Processed with VSCOcam with f2 presetRocco was diagnosed with Asthma a little over a year later. He has an oversized heart, and lots of fluid in his lungs which causes him to start coughing in which then he literally starts drowning in his own body. My dad and I have spent hundreds of dollars on appointments, equipement, medication and beyond that have spent hours with Rocco trying to keep him breathing. Our other cats were kind of ignored because of this – and we’ve exhausted and ignored our own needs because of the love we have for Rocco.

Rocco is my kid, and he is my best friend. Moving away by myself he of course came with me, and I’ve clung to him even more than before. He is my companion, he is who I come home to at night, and he is who needs me and loves me unconditionally. Our relationship has definitely changed after moving away though. I never spend too many hours away from my home, when I drive to the nearest town for groceries I time it just right, and feel excited/panicky on the drive back because I know Rocco is waiting…even though he is probably asleep and could care less. After I come home from work, he purrs, and is glued to me. When I leave town, he comes with me. And at three this morning while he gasped for air, I cried and clung to him almost yelling at him that he couldn’t leave me yet. That’s when it hit me; how ridiculously co-dependent I am on Rocco.

It’s honestly not fair that he was put into my life with such a malfunctioning set of lungs. It’s not fair how attached we’ve become with always a threatening gloom hanging over us that one of these days his lungs will not keep going. However like I’ve said before, I’m glad he ended up with a mom who also has shitty lungs, and knew how to take care of him while others would’ve had given up on him long ago. I hope my Rocco will stay with me a little longer. His purrs, furs, grumpy attitudes, cuddles, and talkative days are what I need.

I love him so much. It really just isn’t fair. That’s all.

-haley.

Find Your Wings.

I’m about to be that ridiculously cliche’ person, and say how much 2015 was packed with changes…but really it was. This year I pushed myself out of so many boxes, comfort zones, and had to learn extremely tough lessons. Because of doing that, I think I’ve definitely become a happier person even though I don’t always express it.

I’ve known this about myself for a while now, but lately I see it developing more inside of me. I love to learn, and experience just about anything I can. When I’m not exploring, reading, learning, searching then I find that I’m dead inside. I love to share this with other people which I think is where I get such a joy in educating kids. Also, plainly it just really sucks to be like this in a generation of people who are so dead to learning. They don’t open their mind, or their books yet they wonder what their problem is. But that’s for a whole other post I guess.

I don’t make New Year resolutions because I think it’s stupid quite frankly. Committing to only one thing? Commit to being better everyday. 2015 was all about change, and I guess you could say I really want 2016 to be full of experiencing, and “finding my wings.” I’ve learned that this is something that I can’t depend on anyone else to do for me, not even support. I’m becoming more confident in my abilities even as a loner, which yes sometimes it actually does sting.

I’ve been by myself a lot of years now, and being tucked away in the mountains I’m really really by myself. I love it though. This year, I’m shedding and pushing myself further into change. I may not always have the time to talk, or write about it, but my soul will live with it. Find your own wings.

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P.S. Check out song of the week.

-haley.