There hasn't been more than a few moments in the past three years where I haven't thought about pulmonary hypertension. Nothing seems to distract my mind completely from it, and if something does, it is for mere minutes at a time.
I am constantly thinking about how pulmonary hypertension impacts my life, how it has changed my life, my health, abilities and future. I am constantly worrying about what may or may not happen. Pulmonary hypertension is progressive, so every time that I have a bad symptom day, week, or month, I find myself waiting for that proverbial anvil to fall out of the sky, and crush me like a cartoon character.
I have been told that this will never get better, that I will one day need IV medications pumping poison into my body 24/7, and that I will die from this disease. If not this year, then sometime soon. Maybe 5 years, maybe 10. I have been asked if I want to go on a lung transplant list. I have been told I will need to go on one, or should have one.
Of course, my friends and family try to tell me not to worry. I already know that worry and stress isn't good for my health, but it's still difficult.
My monthly specialists appointments never end with "whatever you are doing, keep doing it, because you are doing great!" Even after a right heart cath, which yielded very good, but equally confusing results, I was reminded about the wrath of this disease by my doctor.
I always feel like everything is on the verge of catching on fire. I endure feeling as if I have left the stove on, left my straightener plugged in, forgot to lock the front door, or forgot my keys after leaving the house. I constantly have this feeling of dread in my gut, as anxiety starts blanketing my body.
I wonder how long other people can go without thinking about their diagnosis, or worrying about their life exploding? 10 minutes? Half an hour? Several hours? A day? A week?
Did I turn the stove off when I made a cup of tea?
Another layer in all of this is that I seem to have another condition, that is more than likely connected to my diagnosis of pulmonary hypertension. I've seen countless doctors, have been picked, poked and probed. I've had different specialists say that something else is going on, but they can't put their finger on it. They can't figure out the other issue.
I lay in bed recounting all of the symptoms I experience that don't line up with "idiopathic pulmonary hypertension," I think about the timeline leading to diagnosis, and try to put the puzzle pieces together in my head. But even if I could put the pieces together, I am not a doctor. Even with all of the puzzle pieces put together, I can't treat myself.
A flare up of symptoms can come from a change in whether, a change in hormones or an increase in stress. I may have bad symptoms for a few days, or over a month. After a week I start to wonder if that avail is coming for me.
Did I lock the front door when I left the house for dinner?
I am watching a movie with my boyfriend and the wheels of worry start turning. Could I have a better quality of life if I could receive proper treatment for that undiagnosed issue? Could it be escalating my symptoms? X and Y about this doesn't make sense, but it a symptom of this other disease...
I pat my pockets down. Where are my pills? Did I forget my pills?
It feels as if my body or life is haunted. I feel this ghost of anxiety, worry, dread and doom constantly following me. At times, it can feel crippling. I can almost see a little clock in my mind counting down the seconds until I have my next thought that will make me feel anxious, and even sad.
I want nothing more to release my fears and feelings regarding my diagnosis. I long to live in the moment, without a sense of uneasiness crushing my happiness. I wish I could go more than two minutes without feeling as if I have left my iPhone at home.
Of course, I want those things, but how can I have them when my anxiety about an illness is chained to me? It doesn't help that when you have a progressive disease, you always have to watch how you feel day by day. You have to track your symptoms, and worry about whether any of your symptoms are getting worse, and if you are showing any signs of "progression."
Was I this short of breath yesterday?
Why are there red circular swollen marks on my lymph nodes?
Are my lips blue?
Why do I have heart palpitations?
Did I forget my wallet?
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