I know I am missing a day but it is for a good reason.
I thought I had a heart attack.
But, it felt like it.
Turned out to be the worst unprovoked panic attack I have ever encountered. That’s all anyone can figure. However, I got to spend the night “in lock up” , or as normal people call it, the hospital, because the doctors were concerned about my platelet drop. BLAH! So I had to wait to talk to an Oncologist who knew something about PNH to clear me and basically say that I am not dying, right now, before I could go home. Which sucked! Because had I been a normal person they would have sent me home with some knock you out strength of Zanax and I would have been home before the sun came up. But NO! My blood cells have to be mutated, and my platelet count low, and my white blood cell count low, and my LDH level high so doctors notice my blood work and go all Dr. House on me. They think they have found something new and rare. Sorry friend, been there, done that. Read the chart buddy.
So that has been the past 24 hours. I am kind of keeping it under wraps because much like the doctors like to think that they have found a link from my chest pain to some rare condition, so does the rest of the world (aka my friends). I know they do it out of love, but they ALWAYS think that everything has to do with my PNH. They have a tendency to think that because I am “weak to start with” that things like this happen to me more often. Granted, I have my fair share of battles that some do not. But I like to think that I take most of them in stride and more than make up for them. I HATE being viewed as the “sick girl”. If this had happened to anyone else, everyone would have exhaled a sigh of relief and moved on with life. If I told anyone this happened, they would be checking in on me for days on end. Sometimes I have even forgotten that things have happened when people ask me if I am doing alright since the incident.
More ironic still, is that this is more a mental health issue than anything. Not something most people know I have because it is not as visible. There are days it is. There are days the depression is too much and it gets the best of me. When my world is upside down and hope is not a word I can define. Where sitting in a dark theatre is my chapel where I can hide and cry quietly in the back corner. When I call in with a reason why I wont be there, I would rather say that I was ill than admit that I cannot pull myself out of bed. Which is ironic because there are days where i would rather say that I have lost my mind than say that my PNH has gotten the best of me.
Like this time. It’s not that my PNH has really gotten the best of me. It’s that once again it has stopped me from living. It has stolen a day from me that I will never get back. Not because I felt ill or even lost energy. It is because of ignorance and mistrust. Doctors who refuse to do the research and refuse to listen to their patients. It is days like this I get bitter about. Days like this that make me fight harder to take charge of my life and what happens in it. It’s days like this that I will fight to get back, and never will.