So I'm currently sitting in my bed at the hospital. It's day 5 post-op. It's so crazy to sit here knowing everything that has gone on in the last 5 days. I mean I did like almost die Sunday (not even joking in the slightest). But I guess an explanation is owed as to how I got here. What exactly brought me to the hospital bed.
Hidradenitis Suppurativa.
When I was about 15, I noticed these small bumps under my armpits. No idea what they were, I did what any rational being would do....I picked at them. Eventually the bumps grew larger and larger. At one point I remember one bursting and puss coming out. Disgusting right? Well of course I decided in that moment to keep this weird little "issue" of mine a secret. It was embarrassing to look at. I would wear long sleeve shirts so no one would see these bumps forming.
As the bumps began to grow in size and number, I started to get worried. I remember going to my PTP and she said it was "body acne". I remember arguing with her because I knew what acne looked like, and this wasn't it. She confirmed it was, handed me a prescription for acne body wash, and sent me on my way. Keep in mind this continued for years. Fast forward to my mid twenties. I now have these bumps all over my underarms, stomach, breasts, and they were slowly spreading to my groin, thighs, and buttocks.
I had been to countless doctors and dermatologists....none of which had any diagnosis for my problem....continuing to call it "body acne". You can't even begin to understand how frustrating it is to have someone say this issue is because "you don't shower enough". Get the fuck out of here. I must have tried every single body wash, ointment, cream, wipe, gel, steroid, and antibiotic available on the market that were being prescribed to me....none of which did shit to help.
As you all know, I have been taking Lithium for over 13 years. With Lithium comes monthly Lithium level checks via blood work. In about 2015, my psychiatrist noticed by white blood cell count was higher than normal, which we just chalked up to me being sick/getting over being sick. Time and time again following that initial test result, my white blood cell count continued to come back elevated. After a year of dealing with the elevated count, my primary treating physician sent me to City of Hope for additional testing for fear that maybe I had cancer. While at City of Hope, I met a specialist who diagnosed me with Hidradenitis Suppurativa. 2016.
I've been dealing with this condition since 2001......no name, no diagnosis, just BACK ACNE. 15 years later it finally had a name.
Once there was a name, I began researching like crazy. You can imagine how "shocked" I was to discovery it wasn't in fact BACK ACNE (cue MASSIVE eye roll and sarcastic laugh), but instead an autoimmune condition which surfaces in your sweaty or "stinky" glands. It had nothing to do with showering too much or too little. It won't resolve with ointments or antibiotics alone. It is far more complex than that. I quickly discovered the inflammatory foods I was consuming were causing these extremely large and painful boils filled with puss and blood. More often than not, these bumps made it impossible to walk without being in excruciating pain (I'll leave the details of my struggles for another post). The elevation of my white blood cells was due to my body thinking it was under attack and trying to fight off an infection, which was really just my body reacting to inflammatory foods as basic as dairy and tomatoes.
I became OBSESSED with research. I must have traveled down the rabbit hole and back 7 million times. I quickly learned that there is no cure for Hidradenitis Suppurativa, but with proper diet and a routine, you can live a healthy life with minimal flare ups. I also learned that once you reach Stage 3 of Hidradenitis Suppurativa (which I am), surgical intervention is the only solution. Good news about surgery is albeit the most painful thing I've EVER experienced, the flare up will never come back in the areas you've already removed!!!! IT DOES NOT COME BACK!!! Which means no constant pain, no explosive owies, no embarrassing blood and puss stains on my outfits.
It makes me so upset there isn't more out there about this condition....that people continue to suffer in silence....misdiagnosed. I suffered for years before I finally had a name for the condition. Years before I was able to TAKE MY LIFE BACK. Years lost in an excruciatingly painful fog without answers.
I'll be posting more soon about my experiences in the hospital, along with more information about Hidradenitis Suppurativa. I'll also be sharing my near death bleed out experience soon. I'm off for now, the Percocet Fairy is knocking on my door LOL
"Keep your head up. God gives his hardest battles to his strongest soldiers" - Unknown
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