This is a piece I don’t want to write, at all. My stomach is in knots while I’m typing this, and I am sending up a silent prayer that this gets received how I hope it will be.
As most of you know, this past year and a half has been one that has given me a lot of strife and medical issues. We have seen more doctors and I have been in the hospital more times than I can count, it’s been draining to say the least. But, we don’t need to revisit all of that.
I have a confession, I guess I’ve been holding out on you guys, and I’m sorry for taking so long to write this but I needed some time by myself to mentally process it all. I needed to live with the news a bit before laying it all out:
Back in February of this year I had a surgery (Liver surgery 2.0) and they ended up during that surgery discovering something called, get Google ready now, pulmonary arterial hypertension. This isn’t such an uncommon condition, as it coincides with many other prevalent medical issues; but of course, me being me, mine has to be what’s known as idiopathic– there’s no identifying reason as to why I have it. Joy, right?
Between that point and now, we have done more tests and tried to navigate our way through this weird new territory.
Now to give you a bit of an explanation on this condition, PAH as it’s referred to:
Imagine a hose– now you know when you squeeze a hose how the water backs up one way and can’t get through the other? That’s what’s happening to my heart and my lungs. While they’re both medically okay at this point, the arteries between them are not. Right now, they’re about 60% blocked, for no particular reason than that they are. The normal percent for arterial pressure is under 20%. What this means is that there’s too much stress on my heart from being required to pump blood so hard, and that not enough blood gets to my lungs. Thus ending in heart and lung failure.
It’s scary, when you look at facts and statistics, when you become a number and a case study, no longer are you you. You’re a patient ID and a set of vitals, but that’s it. Sitting in the doctors office and having them tell you, without even a flinch, how weak the prognosis is. It’s the most surreal thing ever. It’s so average and ordinary; you walked in there as someone who had a life until 120 to live and now you’re not even sure if you get until 30.
G-d, where are you? What is this? I thought we were on good terms… and now this?
There’s a part of me that sits here and clings onto the fact that G-d is the one in charge of it all, but then there’s the side of me that can only look at the tangible evidence in front of me and be deeply humbled. I am in no control over any of this, and that’s a scary thing for anyone… let alone this girl, who is almost as type A as they get.
Ironically, none of this even got us closer to the root of that which hadn’t been feeling well, but I guess it’s all part of the process?
This post is terrifying for me to write, I don’t know what people are going to think or say. I know people are going to search what this is and find out that it’s progressive and that there is no cure, hence why I am going to rip that band aid off and say it all here. There are some trials in ways to slow it, but no way to stop it. Unfortunately for me I have the type that is even more picky to the medications that can help it, but we’re doing all that we can.
I am still me. I am still worthy of enjoying life. I am still worthy of being treated like everyone else. I don’t want to be looked at as a statistic. I am me.
I am here now, I am doing things now, and we are going to take every single day as a blessing. I am going to travel for as long as I can, I am going to write as much as I can, and I am going to achieve all of my dreams– yes, all of them. It may be a tall order, but if I can’t have faith in much else, I know that I am surrounded by people who love me and will help me achieve what I want.
Like I said, this isn’t easy to write and my heart is practically pounding out of my chest (yay dark humor?)– but we finally have answers. I encourage questions if you have them, because for as confused as I am, I’m sure that you the reader are as well.
I am putting this out there, because this isn’t something I should have to do alone, and because I’m going to need this space to be one in which I can be honest about what I’m truly feeling and experiencing, and I’m not going to apologize for that.
I really thank you all for taking the time to read this, as hard as it was to write I am happy to have this off my shoulders a bit and into the void of the world wide web and whomever listens.
For now, we keep fighting the good fight.