Ports && Bathroom Floors: A gastroparesis Journey

I’ve had gastroparesis since I was 20, a consequence of my diabulimia. It’s something I’ve lived with for over half a decade && just like my neuropathy, it’s been an inconvenience, a burden perhaps, but alas just another part of my life. When I turned 25 I developed cyclic vomiting syndrome, which basically means when I start throwing up, I can’t stop. It caused a massive flare up in my gastroparesis causing 3 esophageal ulcers to form, which were aggravated every time I threw up which was all the time because I had gastroparesis being aggravated by cyclic vomiting being aggravated by gastroparesis. It was a vicious cycle and it seemed never ending, literally. It got so bad that I would start throwing up blood, and the thing with cyclic vomiting is I just couldn’t stop. So every time I got to that point my mom would have to take me to the hospital for IV fluids and anti-nausea medicine because no amount of under the tongue zofran was going to cut it.

It’s been two years now. I’ve been hospitalized 39 times; during the worst of it I was going in every week at times. Eventually, it became too hard to get an IV in me – my veins were too small and full of scar tissue from all the past IV’s – && the decision was made for me to get a port. A port is a small metal appliance beneath the skin with a catheter running from it to a vein. It sits on the right side of your chest, and when you go into the hospital they just hook right into it. Getting an IV went from an hour-long experience to a 5 minute one. But it was a decision that took me almost a year to make because it means a very visible scar on my chest, and when people touch the port they shudder. I laugh when this happens because comedy is the right response; if you don’t laugh, you cry. But that’s my body… you’re shuddering at my body. I had to reach the point where I realized I couldn’t keep holding onto that picture of who I was pre-sick girl, because let’s face it, I’m a sick girl now. Accepting that made my life infinitely better. It didn’t limit me or label me, it freed me. && honestly my life would have been so much easier if I had said yes when my doctor suggested the port the first time, a year before I finally consented.

I’ve also thrown up so much, so hard && so repetitively that the bathroom floor became the most comforting place in the world. When I laid my head down on the cool tile and stopped trying to force myself up, I always felt better. Should most people lie down on the bathroom floor? No, probably not. But the truth is, I keep mine exceptionally clean && I’m not most people. I’m a girl with many chronic ailments. Being a sick kid doesn’t define me, it’s not who I am, but accepting it as part of me does help me accept the realities of my world with a little less judgment && a little more self love.

One thought on “Ports && Bathroom Floors: A gastroparesis Journey

  1. Wow, if that’s your first blog post, I wonder what the next few will talk about. Seriously though, you are brave and smart to share your story. Also, and I think you know this, if it feels right, helps you, and makes things better, then it’s probably the right thing to do. I support you no matter what.

    Like

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