From Breakdown to Breakthrough – Humberto’s Pemphigus Vulgaris Story

From Breakdown to Breakthrough – Humberto’s Pemphigus Vulgaris Story

Last year, I came down with a severe autoimmune disorder. It came out of nowhere. And it was bad. I was hospitalized three times over the course of a few months. Before that I had not spent a single night in a hospital since I was literally born.

I’m recovering now, day by day getting healthier, closer to “normal”, presently within reach of remission. After more than a year in this battle, one in which many around me – doctors and family – thought I could die, I can finally see the other side of it. Holy sh!t, what an incredible journey it’s been.

The thing about this autoimmune is that when the symptoms first began – fatigue, intense allergies, and persistent infections – doctors had no idea what was going on.

They tested me for everything. All my vitals and markers were fine, except for my immunity cells (b’s and t’s), which were off. But there were no viruses. No cancer. Nothing could explain why my immune system was going haywire, spurring infections I should have been able to fight off easily.

Eventually, my mouth and throat was lined with ulcers, and my body was covered in blistering open sores that would not heal. I looked like I had AIDS. I don’t write that to be facetious or disrespectful. It’s how I looked – so much so that separate doctors had tested me for HIV three damn times. The results were always the same – negative – which was perplexing since my t-cells had dropped to the level of someone with an immunodeficient disease.

My esophagus was the most affected, inflammation so bad the skin was eroded along the inner lining of my throat. I could barely speak, sometimes losing my voice entirely for days from a cratering effect this condition had on the tissue around my pharynx.

…And it was extremely difficult to swallow – to eat, even to drink water. I went from 170 pounds to a 117 pounds! I looked like I was coming out of a concentration camp. Again, I’m not being facetious, it’s how I looked. Have you ever seen The Machinist with Christian Bale, where he gets down to that same weight? That was me, but worse.

I coughed up thick nodules of blood every morning. I was depleted AF. It wasn’t going away; it got worse progressing on and on for weeks, and then months. What the f*** was happening to me?

After multiple visits with a multitude of befuddled doctors, including immunologists, hematologists, dermatologists, infectious disease specialists galore, a biopsy finally shed some light on my health issues. I didn’t catch anything. Rather, I was under attack from my own immune system. My own b cells were the clurits, clobbering the inner lining of my skin (specifically the desmoglein, the proteins that bind skin cells together), eroding skin cells, and tearing me up from inside.

The disease is called Pemphigus Vulgaris. It’s a nasty name for a nasty autoimmune condition. Don’t google-image it if you’re squeamish. I included some sensitive pictures at the end of the article for the curious, but be forewarned, it’s intense.

Pemphigus is a very serious disease. Once it was confirmed I had it, some of my friends and family would look it up, and comment about its potentially being “fatal” and start quoting mortality rates. I’d have to shush them, “Don’t mention f***ing mortality rates to me ever again!”

What I held onto for my own piece of mind was the stat that about one-third of the people who achieve remission (full healing) never see this disease again. I knew that would include me. I’d get over this at some point. I’d be fine. But till then, while I was in the thick of it, I had affected me in so many ways, and symptoms so long-lasting, especially my inability to eat.

I withered down. I could barely pull myself up any stairs. I felt so weak, like never before.

There’s no known direct cause for this kind of autoimmune. Autoimmune diseases in general are basically spontaneous and not associated with any observational causes. They can also go away and never come back – full remission. Increasingly, doctors are conceding stress, and other psychosomatic conditions probably have a lot to do with igniting an autoimmune disease (and ending them). I happen to think an autoimmune is you taking things out on you. If that’s the case, I put myself through some shit this past year.

What brought this on? I think it had less to do with anything environmental, though I’m sure the toxic chemicals we ingest on the daily don’t help. And I am an admitted biohacker, who has tried various peptides and stem cell treatments. Could the biohacking practices have contributed to triggering my condition? Possibly. But also likely, was the pressure I put myself under – my depression, my anger, caving in all over me in the form of this illness. Maybe the emotions I buried deep down, things I had not sufficiently dealt with (but thought I did), that sparked my predicament.

I was forced to make a pit stop in life…Now, I’m an Aries, of Cuban descent, generally excitable and energetic, and if you can’t already tell – I’m not a pit stop kind of guy.

I’ve always been in forward motion. Go. Go. Go…Work. Create. Figure something out. Keep it moving. Let’s rock n’ roll. Lights, camera, action! Emphasis always on the action.

That’s how I’ve operated for all my adult life. It was the way I thought I’d always be. But suddenly, God had a change of plans. The rug was pulled out from under my feet and I was slammed on my ass.

All things considered, I maintained a healthy optimism despite the severity of the situation and the grotesque reality my body was processing. But I couldn’t help being worried. Some of the moments in which I was confronted with the seriousness and gravity of health issue, included when my doctors, who had never seen this disease before, having only read about it, would usher in groups of young resident doctors and medical students into my patient room to take study my abhorrent condition.

Then there was the day I started my treatment of monoclonal antibodies, this was set up in Florida, thanks to my oncologist uncle who pulled in some favors to have me administered much sooner than Kaiser Permanente (in Los Angeles) would have. Kaiser had me on a six week waiting list for the treatment I needed (having been in utmost health all of my adult life, I had opted for the cheapest insurance coverage I could get via my job as a producer).

Anyway, I head into a facility in Miami ran by La Liga Contre el Cancer (The League Against Cancer). It’s a place where cancer patients received their chemo treatments. The 4-hour infusion I was getting was not chemo, but Rituximab, which kills off the b cells creating the ruckus in my immune system is often administered in cancer treatment facilities. So I walk in, looking like a background actor from The Walking Dead. I take a glance at the old man, and older women on the other side of the room, getting their chemo session, and instantly, I feel sorry for them. So what a wake up call it was when I was hooked up to an IV, at one point passing in and out of consciousness, and I’d gaze up across the room to find all these older cancer patients staring back at me with wide eyes and faces that said, “I wouldn’t want to switch places with this guy…He looks fucked.”

This one lady was eyeing me, visible shock on her face. Her hand was clasped over her mouth, like she was watching a horror movie. I’m thinking, wow, these people are over here feeling sorry for me. Honestly, I laughed on the inside from all this…a nervous chuckle. I wouldn’t let moments like that get to me. After all, I knew this was the beginning of an important spiritual mission. Maybe others thought I was going to die, didn’t see it. But I felt it. This was a journey I had been waiting for, expecting for a while now.

I felt this was a reckoning, a cleanse of sorts. My sour emotional state would be addressed through the body. Because the body keeps score. It holds onto things. And now I had to find out what it really means to let go.

The physical process would feel like something more ethereal – the expansion and evolution of my soul…I recognized that life said to me, okay, you’re not going to slow down. You’re not listening. You’re going to keep going, going, going like the Energizer Bunny. Well, here you go. Now you need help. Now you need support. Now you need to slow down.

That’s exactly what happened.

I ended up going back to home, Miami, so my family could help take care of me. And honestly, that became one of the greatest gifts that came from this grueling experience.

I grew closer with my sister, who took me in, taught me the wonders of protein shakes and home-made smoothies, the only nourishment I could take down, as I remained unable to swallow solid foods. I worked through things with my parents. I came to terms with the reasons they may have been hard on me as a child, and why I may have been even harder on them as a teen. Family relationships that had been sitting in the background suddenly became the center of my life. I forgave, and I was forgiven.

The illness put every spiritual belief I had to the test. And rather than abandoning my faith, I leaned into my spirituality and remained rather positive (though also often profoundly frustrated).

I got back to basics, meaning I revisited my Christian upbringing. The one I rebelled against for most of my youth. While I have for many years functioned as a New Age kind of guy, and still practice many forms of Vedic /Eastern spirituality, during this period there was lots of praying to Jesus (and to my deceased grandmother Coralia), working out my repentance, and my surrender to Christ.

I can describe this disease with one word – Biblical. Ever read the book of Job? It’s the Old Testament’s hardest hitting story. The book of Job follows a wealthy, righteous man who loses his family, wealth, and health when God permits Satan to test his faith. Despite enduring debates with friends who claim his suffering is a punishment, Job maintains his innocence while wrestling with God’s intentions.

The last tribulation Job must endure are boils all over his body, not unlike the last phase of my autoimmune, where blisters ran up and down my torso and legs, many of them popping or rubbing off, leaving open, sometimes bloody wounds all over me…If these were ancient times of Job, I would have been cast out of society along with him, as a leper, forced to live in a cave outside the village, fed bread and water once week by a nun. Yes, these are the things I pondered.

Now, a spiritual skeptic might observe my situation, which came on the shoulders of a consistent spiritual practice, and say, “Oh, look at you now. All the crystals and meditation didn’t help you? You’re sick as hell, for months ongoing. You have to take sick leave. You have to go home and get taken care of by your family. You might die. Maybe all the spiritual stuff is superstitious nonsense after all.”

But I never saw it that way. If anything, this difficult episode in my life was just as validating to my faith as the most joyous experiences I’ve ever had.

If I didn’t have these spiritual beliefs, I would have fell prey to negativity, spiraled down into darkness, and fallen into the trap of believing I was not coming back from this. I would have given into self-pity…Instead, I believed this was happening for a reason. This is my graduation exam. This was my obstacle course. This was Jedi training.

One of those synchronicities that serve as a sign I was on the right path to redemption, was when I started to improve, I picked up a bible, and I just opened it to read whatever page would come up. It opened to the last page of the Book of Job (at random out of over 1,000 pages). This is part where God ultimately answers Job, revealing his vast cosmic sovereignty, which leads him to trust in divine wisdom, and where he eventually receives his restored health and wealth.

I trusted this challenge was here to teach me. I was going to come out of this stronger and wiser. And all the things that I’ve been working towards might be easier to reach because I go through this challenge. This process was burning karma. Every night I thanked God for letting me heal, even when it seemed like healing was a pipedream, and so far from my reality.

This process has revealed things about my life and myself I needed to be more aware of. While in a lot of ways, I had a very challenging childhood, I’ve also had a very cozy adult life… Because for the most part i’ve been in control of me.

I’m an Aries. I’m good with myself. I’m good on my own. I take care of me. I don’t need anyone. Not surprisingly, I haven’t been my best in relationships.

After high school. I left my family. I left my town. I landed a job in the media pretty quickly out of college. I got many of the things I wanted, and what I wanted was often shallow, superficial, even pleasure-driven and hedonistic. But I had the sovereignty I wanted as a little kid. For years, decades actually, I lived my life the way I wanted… and my health was impeccable.

I was independent, free AF, and had control. I was like “F’ you. F’ you. F’ you. I got this. I don’t need help.” Very Aries. It was engrained in my identity. Then I got this autoimmune disease. And it was like I was living in the negative of an image on celluloid film.

And one thing I couldn’t stop thinking about was this idea: the damage I do myself…But I thought I loved myself? Why would I harm myself like this?

My mom and sister, thank God for them. My hospital (prison) room.

Scientists increasingly talk about the role the nervous system may play in autoimmune conditions. The nervous system becomes dysregulated and eventually the immune system follows. What’s interesting is that Virgo rules the nervous system. And while I’m an Aries sun sign, I’m also a Virgo moon.

Now for a detour into some astrological concepts

Your moon sign is probably second only to you sun sign (birthday) in terms of astrological influence on you. So, while I exhibit a lot of Aries traits on the surface, and it’s an Aries energy that leads me, Virgo is what rules my emotions behind the curtain.

Virgos can be anxious. Virgos are hypercritical. They like analysis, details, understanding the system. Virgo likes putting things into boxes. Optimizing things. Fixing things. Virgo can tie their entire sense of worth to productivity and output. If I can just get this right, then I’ll be okay. If I can just perfect this thing, then I’ll be okay. If I can just work harder, then I’ll be okay…And asking for help? That’s a hard one for Virgo.

Over the last couple of years, eclipses have been happening along the Virgo-Pisces axis. Now, astrology is all interpretation. And my interpretation is that people with strong Virgo placements have been getting lessons about control.

That’s the lesson I keep coming back to. Not that ambition is bad. But maybe control isn’t everything. Maybe sometimes life asks us to surrender.

I wouldn’t wish Pemphigus Vulgaris on anybody. But I can’t deny what it has taught me. It forced me to stop. It forced me to receive help. It forced me to deepen my faith. And it reminded me that some of the biggest transformations in life don’t happen when we’re charging forward…

…Sometimes they happen when life forces you to make a pit stop.

In the coming weeks I’ll add some horror + humorous stories from my journey…yes there are some funny moments, despite involving the occasional gore, from bleeding body parts to a poop that took 48 hours and two enemas to pass. Some things I just have to laugh about even if they left me with scars, and I invite you to laugh along too. But I hope to inspire. because I continue to get better. I continue to come back from this, and that means you and others can heal from anything.

Sometimes you have to go away…to come back.

Well, I’m on my way back. That’s for damn sure. Where I’m headed, I don’t know, but I know it’ll have meaning and purpose. I know everything I am learning about myself, divinity, and the human condition will pour over into my work as a writer and producer. More than anything, I know God will grant me the grace I need to be the best version of myself I can be. I know the same for you too.

Aho.

Back at it, on the set of my podcast Checkitow, available on LatiNation Media.
Gratuitous shirtless pic? Yes, but it serves as physical evidence of my comeback…

***FOR THOSE WHO VENTURED THIS FAR DOWN, THE FOLLOWING IS A GLIMPSE INTO THE MOST DIFFICULT PHASE OF MY CONDITION, AND THE MARKS IT LEFT ON MY BODY…I’LL ALWAYS REMEMBER THIS PERIOD OF MY LIFE AND THANK THE LORD MY GOD FOR SAVING ME.

(WARNING: Graphic medical photos below):

My worst days: I was overwhelmed by auto-antibodies attacking me from inside, all over + the daily bandage / gauze unwrapping ritual before torturous, stinging showers.

I pray I never know that kind of suffering again. But if I do, I’ll continue to accept my path toward the Christ consciousness, and go onward, however hard it may be.

…God bless you and us all.