An Unexpected Loss

WARNING: This post will have details and images of a graphic nature.

I suffer, with countless others with an auto-immune disorder of the skin called Hidradenitis Suppurativa. This condition normally shows itself when a person enters puberty. It is passed to a person when one of their parents is a carrier. There are varying stages, but this condition never truly gets better. It’s more about mitigation.

At the time in the world when I was becoming an adult, my case of this was only getting worse. I was going to the ED at least once a month in unbearable pain. My own doctors could not figure out what was causing these painful boils that would appear and grow. They called them carbuncles.

This was when I was placed into a trap. The doctors didn’t know what to do and they couldn’t resolve my issues. This is when I was prescribed large amounts of opioid based pain medicines as if they were candy. It was common for me to have 500 pills on hand at a time. The medication didn’t resolve my issues; or relieve my pain however. It only put me in a state of intoxication. This was not how I wanted to live my life.

This was long before social media, I think even WebMD was fairly new at the time. It was hard to find answers on medical issues that were not mainstream. Almost impossible when there was no clear answer as to just what that issue was.

Insert the woman who I came to call Princess Patti. I first found her through a blog she wrote. In it she explained this health disorder and screams of “me too” rang out in my head. She sold little pins that said “HS” on them, and I bought one.

As social media platforms overtook the way people socialize in this world, Patti and I found each other again. She had created a group for people with this disorder, and it was then that my world was changed. I learned that I wasn’t the only one having issues receiving proper medical treatment. I discovered I wasn’t the only one who felt shameful about what this condition had done to my body, and the smells that emanated from the sores on me. I literally found an entire world filled with people JUST LIKE ME. It was liberating to say the least.

Always sweet, always loving. She was a girly girl who loved Paris, The Golden Girls, her Schnauzers and her family. Many called her mamma Patti, as she cared about them more than their own mothers did.

Over the years, she and I would become very close and then drift apart on a repeating cycle. She lived a complicated life, as did I. I had been through my discovery phase of all of this; she continued helping those just finding out, giving them the support and tools they needed to face this new world they didn’t sign up for.

Then I had a surgery to fix the scar for my Vagus Nerve Stimulator, and the world came crashing down. My case of HS (I will call it that for the rest of this post) became like a wildfire out of control. My problems were primarily located in my inner thighs but had now migrated to my underarms, almost overnight. It was devastating.

Patti had the worst case of HS I had ever seen before, and yes she shared images of her afflicted areas with me. She was able to turn her struggles and disasters into a strength for me.

Her HS had began in her vaginal/pelvic area and spread, the most common place for women to get it. At one point the doctors inserted a mesh implant; which wreaked all sorts of havoc on her. She almost lost one of her legs due to one of the surgeries she had. I don’t know if the implant or something else was the cause of, but she also had cancer at one point. That kept her from receiving many of the treatments that are now given to people – like me. She couldn’t have sexual relations like normal people do anymore, and she was constantly battling with Sepsis and other serious life threatening problems. Yet she persisted.

I was just going through our messages, and here’s one of note she said to me. “I think you’re a good man with great intentions , you’re a good person with a good heart and wants to do the right things.”

Here is the thing that troubles me however. According to the entire HS world, and a screenshot from her son (attained through a friend I met through her), she passed away due to a heart attack this week.

I cannot find any documentation anywhere that such things are normally noted. Not the newspaper local to her area(s), nothing. While I do not doubt her son’s words, it’s hard for me to find closure. The state in which she lived has peculiar laws on public records, and I can only lend that to blame. She’s the kind of lady that I would have driven half way across the country to attend a funeral for. She made that much of a difference in my life and the life of others. I want to pay the greatest of respect to the woman she was and the woman she became. I want to show her family just how appreciative I am for sharing her with the world.

The saddest part to me is that just a couple of years ago, she was filmed for a production called “For the Hayters.” It was supposed to be on MTV, something I cannot confirm. There is a video on YouTube that I will share however. The title? “43 and Dying” It’s sad foreshadowing of what was to come that truly breaks my heart.

I honestly thought I would pass before she ever thought about going. As a community we have faced many deaths. Many suicides. There comes a point where a lot of people just cannot take the pain, take the internal torment any longer. I didn’t know any of those people; but it’s guaranteed that Patti did.

The community Patti built, the community I’m a part of is tattered and in pieces. All of our collective hearts are broken right now.

Your pain is over now, may you find some peace you weren’t able to find in this life. I will miss you forever and always, my Princess Patti.

Patricia Jane Fiore, 1975-2021.