Pemphigus Vulgaris: Part One

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I didn’t want to write this. We never do when it’s the hard things do we? It’s much easier to sweep the things that pain us the most under the rug and pat it down with our foot and pretend the lump isn’t there. That some monster isn’t hiding underneath. But at the same time, March is Autoimmune Awareness month and I would like to tell my story during this time. I haven’t done this statistically myself (of course) but they say that 50 million Americans are suffering from autoimmune diseases. And I think it’s time that we find a way to make this better. So here it is, my personal story of Pemphigus Vulgaris.

It all started with strep throat.

I was 19 years old when my entire world flipped upside down. It all started with a bad case of strep throat, before that all I knew was a healthy life. Devoid of doctors and medications, afterwards I would understand what it was like to be on over 20 pills a day. I had a job I loved, a car, and thought myself to be invincible at that point at my life. But I was wrong. I ended up in urgent care after two weeks of having a sore throat and not being able to eat solid foods anymore, they gave me an antibiotic that contained penicillin. My body had a bad reaction to it, a quiet allergic reaction on the inside that triggered my pemphigus.

Let me tell you what pemphigus is, you know all those antibodies that you have inside of your body protecting you from getting sick? Let’s imagine that your body thinks that your body is the sickness, crazy right? But basically an autoimmune disorder means that your body is literally attacking itself from the inside out. This leads to blistering and lesions that form on the skin, in the mouth, nose and basically all over my body with each flare up. By flare up, I mean my body would totally freak out and the blisters would be everywhere. Next because they’re so fragile, it turns into open sores. So basically, think pain. Lots and lots of pain. Everywhere.

My mother had to change my bandages twice daily and I was so thoroughly wrapped in bandages that I looked like a mummy. The hospital became my home away from home and visiting my doctors became a social outing. My life as I knew it ceased to exist, and pemphigus became all I knew. At first they’d put me on heavy pain medication, it was the only way that I could sleep, but then they would take it away. They feared me becoming addicted because they didn’t know how long the pain would last. Many nights I would suffer, I couldn’t walk, I couldn’t even sit up by myself during the worst times.

The open sores on my face got infected and because they were suppressing my immune system to try to keep the disease quiet my entire body became infected. My face looked green, literally. And the times when I did have to go outside to see a doctor, people stared at me and backed away or jumped. I’ve been told that through all of this, I was still smiling. I guess that really freaked people out.

At the time, I had just started college while I was in the midst of treatment. I didn’t know what else to do. I couldn’t work but I loved learning and I went anyway. It was here I was introduced to art. And to all the students at Tri-C, thank you. Because not a single student acted like there was anything wrong with me. They would stare into my eyes past my green melting face and have entire conversations with me about their life, their art, what they were watching on TV. And at school, I still felt like a normal human being and not the monster that I thought I looked like.

My art teacher especially became one of my dearest friends, when we had to pick a found object and demolish it, I brought in one of my needles. Instead of being creeped out by this, he went and bought me a bag of needles from the drug store and let me pour my anger and confusion and pain into those needles. It became this project here:

my first little needle
My first little needle
My full art project, the Vaseline was used underneath my bandages and I incorporated the empty containers
My full art project

It didn’t win any prizes, but I found that by creating, by releasing the pain that was being inflicted on me every day, that somehow, I could still live. That in the eyes of the other artists around me, I wasn’t a freak at all. I was just someone with a story, I was just an artist like them. And we were all capable of creating something beautiful.

For a little while, even though I was in so much pain and realized as Kermit the Frog said, “It’s not easy being green!” I was happy, happy that there was still a little piece of something that I could do. I could create, I could destroy and rebuild. And present my pain as art.

I didn’t know then, that this was only the start of all that pemphigus was capable of. I had no idea what was coming next.

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27 thoughts on “Pemphigus Vulgaris: Part One

    1. Thank you. It is a very rare and ugly disease, physically at the moment it can’t be seen except my scars, so my hopes in spreading the word is to maybe help someone else going through it. Or if you ever have a friend who has an autoimmune disease, so more people will have an idea of what it is like. Thank you for reading and God bless you too!

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  1. My gracious! I’ve never heard of this. I cannot imagine your pain, but I do understand what it to live with chronic pain and illness. You’re so strong and brave and to be able to focus the negative into a positive outlet is such a beautiful thing!

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    1. Yeah it’s super rare a lot of doctors have never heard of it, but I was inspired by the Pemphigus foundation (who are fighting to find a cure for it) to help spread awareness in my own way. And living with it day in and day out is the hardest part, but the more positive that I stay, the better things go! 🙂 I just focus on what I can do, which at the moment, is writing

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