PH Health

Unfortunate Events.

I finally took my medication last night, and now I’m just a girl with a headache. Hmm, just a headache? Well, that’s how I appear at least. I forgot how much a disease can hurt. After so many months you become numb to the constant feeling of the pain that a disease can bring. Forever, I thought the heart attack like episodes happening daily had to be normal. I was growing immune to them. After my life saving treatment came about, I felt what I thought was normal which in reality was just “better” until the side effects kicked in. When most people see me the day after I take my medication they think I’m probably dramatic or exaggerating. I complain about my head, and what not, and to them it’s just ordinary. The pain this disease brings in every way is anything but ordinary.


Hours after I swallow the pills that supposedly save my life, a series of events overwhelms my body. The ridiculous drop in blood pressure makes getting out of bed, showering, and even standing up a difficult task. My heart just wants to rest because its been fighting its whole life for just a break, and now with this low blood pressure, why not try? Sometimes the action of merely lifting my hands above my head to wash my hair can take my breath away, and make sparkles appear everywhere because my body wants to turn itself off. These pills are professionals in dilating every blood vessel in my body to the point that my blood boils beneath my skin, and rises to the surface in weird areas causing a red-hot uncomfortable rash. Believe me, it’s not cute either. The pills have dilated my blood vessels so much that the ones in my head feel as thought they might explode. Everything tightens making any light, sound, movement, and even food a horrendous experience, and sometimes I cant even open my jaw because that’s the level of pain that my head is enduring. The pills are so exact in making sure that everything is dilated to the point that my body retains fluid, which sinks down into my feet. My legs, ankles, and feet swell as though I’m nine months pregnant, pushing me up two shoe sizes, and cutting my feet open to let them drain becomes a rational thought. That’s how badly they can hurt. Lets not forget the feeling of no longer having control over your body. You feel as though you are regulating your breathing quite well, yet for some reason that indescribable feeling still encroaches upon you. The oxygen is slipping out of your lungs quicker than you can replace it, you lose the feeling of the atmosphere that you are in, and suddenly you feel like you are ten years away from the room you are existing in. Those sparkles? They may be pretty but they are deadly. You don’t know whether this is “just another weird feeling” or if you actually need to go to the hospital. You’ve done this so many times that sitting on death’s doorstep is normal. So, if these pills don’t work for you? Why, you get all this, and a tube put in your chest for a pretty penny as well.

How ironic that this pain is one of the only things letting us know that we are still alive. Sometimes it doesn’t even feel like its worth it anymore, and that the outside world requires too much energy for the time being. At least, that’s how I feel today. So, this is not just another headache. This is a series of unfortunate events.


P.S. Negativity, I know. I’m sorry.


5 thoughts on “Unfortunate Events.”

  1. May i ask what pills do you take? And do you not always take them? Im one of those unfortunates that never had the option for pills, instead i was given the lovely tube in the chest, because i only had 3 months left when they found my PH, 2 years ago. Im on pills now on top of the lovely tube and brick like pump i carry. I know your pain. And as much as i complain about Wilson, (my pump) he gave me some resemblance of my life back. Hope you feel better.

  2. Girlfriend….I know you try to be the positive face of PH, but even the PHenomenal Haley needs to vent sometimes. You have as great a need to share your pains and trials as the rest of us. I have always thought you were the “real deal,” but reading a “not bubbly” post from you might make others take you more seriously when they see you have the same pain you do. If you ever want to vent privately I’ll get my email to you. Hope the meds get settled in and you feel better.

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