Dearest readers who I am too exhausted to make up a clever name for,
I had another emergency and it sucked like all the rest. I am in loads of pain, nauseous down to the core of my tummy, and my HP is at -1000. I took today off work and I am on bed rest, trying to muster the strength to do a little something, whatever that may be. While I am mustering, I will tell you the story of what the actual fuck happened to me.
First of all I have to express how dreadful it is to be a disabled person for many reasons, one particular reason being that you never know when a seemingly okay day will turn into a nightmare. In eight hours, I went from this picture, which is the one I took to thank all of you for being the absolute coolest:
To this picture that I took in the Emergency Room five hours into my hospitalization just so that I could put this in the blog:
I’m not sure if this is one of those things that only I can see, but these pictures are vastly different in more ways than just the background, hair and clothing. In the second one, I actually thought I was smiling as best I could. Turns out, I wasn’t, but I was too zombified to take more than one photo. So how did I get from the first to the second? Truth is, I don’t know. But this is how the past 30 something hours have gone.
Saturday after being out most of the day I began to feel weak and was starting have chest pain. When I say I started to feel weak, I mean I started to feel even weaker than I normally do, and I am normally quite weak. Despite being covered head to toe in pain every day, chest pain is not something I normally get so I was already concerned. As the day went on, all my symptoms got worse and all the rest of the pain I have in my jaw, neck, shoulders, and everywhere else was quickly increasing. Something felt wrong, but I often feel wrong, so I ignored it. Sunday came and went with relative ease aside from feeling far too sick, and before I knew it, I was happily in bed, exhausted and ill.
At 2am on Monday morning I awoke to not only pain, but to the booming thunder and strobe light lightning as a summer storm raged outside my window. My pain seemed to be at its worst yet, and I couldn’t get back to sleep, so I sat up in bed and watched the light dance through my apartment. After ten minutes the constricting in my chest and the pain in the rest of me was becoming truly unbearable. I shook my boyfriend awake and said, “babe, I really don’t feel good.” And then I promptly passed out.
I woke up on the floor, which is not totally odd for me since I suffer from Vasovagal Syncope. I was covered in sweat, nauseous, and the pain in my body was surging through me like I had been possessed by a fiery demon. My chest felt constricted more than ever before. My boyfriend got pillows to elevate my feet (the standard response to a Vasovagal episode) and I lay on the floor writhing and dry heaving. Sexy, right? After a few minutes he took my blood pressure. I am hypotensive so my blood pressure is always low, and since Vasovagal episodes lower it even more so, my readings after the episodes are so low they probably have seen the core of the Earth. However, this time was the lowest reading I’d ever had in my life: 55/50. We both knew two things- I had to go to the ER, but I wouldn’t be able to get there without passing out at least a few more times. So, we called an ambulance.
I remained on the floor in my miserable state and soon enough the Paramedics trudged into my bedroom. They asked all the usual questions. Who are you, what happened, medical history, are you a Pokemon Master, and so on. They lifted me up and strapped me into a metal chair that they use to get people down staircases when gurneys don’t work. As soon as the last strap was on me, I lost consciousness again, and they had to unbuckle me and lay me on my bed. They then asked my boyfriend for a hanger from my closet, inserted a catheter into my arm, and hung a bag of saline from the door. We waited for nearly an hour until my blood pressure was decent enough to allow me to sit up again without passing out. Finally, I was put into the chair, carried down the steps, put on a gurney, and was en route to the ER faster than you can say hypotension.
I arrived at the ER sick and scared as most people delivered by ambulance do. I waited, I was tested, I waited more. There’s always a great deal of waiting done in these situations which seems unfair considering having to wait to find out what’s wrong with your body is never an easy task to handle. But I waited and waited some more. Finally my doctor came along* (mini post about him in the next post because of really important reasons). I explained again what I had experienced and how despite my fears I was quite sure I just had one of my many vasovagal episodes, but what had triggered the episode was a mystery.
At one point he asked me, “well, how do you know it was syncope and not your heart?” And in a sudden increase of fear I replied, “well…you have a point. I just don’t know.” Touche, awesome doctor man. I asked him if there was any way to tell the difference between passing out from Vasovagal Syncope, a heart issue, or a brain issue, because one thing I always fear is that I will one day blow an episode off as Vasovagal when it was actually something far more dangerous. He said that unfortunately, there is no way to tell aside from doing all the tests that rule out different conditions. That was exactly what I did not want to hear. So I sat and worried more about my brain and my heart while I was being eaten alive by pain.
After ten hours the tests all came back and my heart was presumed to be okay. It was decided by the doctor and the tests that the reason for my episodes was the same as why I have had these episodes before; my body was so overwhelmed by pain from all that I have been diagnosed with that my body pretty much said “fuck this,” and short circuited. The doctor was still slightly worried about proper blood flow to my heart though, so he asked me to do a stress test as soon as possible. It’s not horrible news but it isn’t good news either. Basically, my body couldn’t stand being my body anymore and gave up. This unfortunately happens to me somewhat often, and it’s painful and depressing.
On top of it, my pain especially in my head, jaw and neck are now worsened by the fact that I hit my head on the floor when I passed out. I feel like Two-Face from Batman, the two halves of my face feeling completely foreign to one another. I am also worried that I may have worsened the Syrinx in my spinal cord, since I was told that every time I pass out from a Vasovagal episode I run the risk of making it worse. When I told the nurse at the ER this, her response was, “my best friend has a Syrinx too. She’s in a wheelchair now.” Well, that made me feel tons better.
Since coming home from the hospital I find myself still scared and feeling as if the right side of my face will simply fall off at any given moment. My temple, my jaw and my neck on my right side are hurting terribly and have no intentions of leaving me alone. I have mostly slept yet I am still too exhausted to even do the smallest things like walk across the apartment, and I really just want to hibernate.
. In short, I feel entirely broken, and I’m sitting here wondering how I’ll turn out. Will the Syrinx one day get so damaged by my never ending syncope falls that I too will end up in a wheel chair? Is it really true that no matter what I do and no matter how hard I try I’ll never amount to anything more than a sick, sad, broken girl whose diagnoses rule her life?
When I first started this blog my intention was to help others such as myself and always have the answers, or at least positive, hopeful suggestions. But the fact is, that wouldn’t be honest of me, because I don’t always have the answers or happy, tight knit conclusions. Sometimes I have to tell you that I am terrified and I am lost navigating a world of disability and pain that most people I am close to don’t even come a little bit close to understanding, and it’s all incredibly heart wrenching and difficult.
I want to tell you that no matter what I’ll be strong and be able to figure it out, and that it will get better, but as I sit here sick with tears running down my messed up half of my face, the thought running in my head over and over again that not even Paramedics were able to get me to sit up and get me to the ER because I was too broken, I don’t feel strong, inspiring or hopeful. I feels scared and broken and alone. I don’t know if I should be sorry. But I’m sorry anyway.
I’m an outsider, outside of everything,
Everything you know, everything you know.
It disturbs me so.Everybody tried to push me, push me around,
Everybody tried to put me, tried to put me down.All messed up, hey everyone, I’ve already had all my fun.
More troubles are gonna come, I’ve already had all my fun.