FINALLY HOME!!!

So I was finally released from the hospital on Thursday. Being in the hospital for 6 days was the most taxing experience of my life.

The surgery itself went very well. The DR (which is the most amazing doctor on earth) did an amazing job. She really focused on my problem areas without removing an excessive amount of skin. The wounds are left open, meant to heal from the inside out. Once fully healed, it will be scarred skin, but the HS will not come back into those areas any longer!!!!!!!!

The areas I had done were the biggest problem areas for me....that being the groin, thigh, and buttocks area. As you can imagine these areas are sensitive AF, and not easy to deal with post-op for a variety of reasons (think pee/poop).

Friday and Saturday were ok. Painful as fuck, but I was managing with the help of Norco (which eventually got bumped up to Percocet because......well duh).

Sunday was by far the WORST day of my life. When I went to use the restroom, I sat down on the toilet as best I could and felt a rip. The next thing I knew there was blood EVERYWHERE. I mean GUSHING EVERYWHERE. I panicked and started bawling, asking for the nurse. When the nurse came and saw the fucking bloodbath she panicked too. We got me onto the bed and she was able to apply pressure to keep the bleeding from continuing. Luckily my surgeon wasn't too far and she rushed over to assess the issue. Turns out it was an arterial bleed from a main artery and I was bleeding out quickly. My Dr legit SEWED ME SHUT ON THE SPOT. No anesthesia. No pain meds. No time to think.....obviously because this main artery was just gushing blood everywhere. Not sure how I didn't pass out. Not sure how I managed to lay there and not scream as she sewed me back together. But yeah......that happened.

The rest of the week was pretty much smooth sailing from there. I had a wound vac applied which is amazing. A wound vac helps you heal 5 times faster. One of my wounds is beyond deep, making me a perfect candidate for the vac.

Now you have to understand, these wounds aren't small or superficial. They are very deep. The skin was cut and removed down to the fat. So basically picture someone taking an ice cream scooper and scooping out chunks of my skin. Not sure if that is TMI....but this whole blog is TMI so fuck it haha

I finally got released to go home which has been AMAZING. There is nothing like having your own bed.....your own stuff....my dogs which I missed like crazy. I have my very own wound vac here at home now which means I'll be healing in no time!!! I'm under the care of home health. They come to change wound dressings and check on my wound vac. My family has also learned how to change out my dressings and they themselves have been helping me too!! So not only are my mom and sister attorneys, but they are nurses too lol!!

I want to take a quick second to give so many thanks to my family.

My mom. Who slept in the most uncomfortable chair every night with me. Woke up at all hours to help me. Held me when I cried. Brought me Starbucks every single morning. Advocated for me when I was too weak to do it for myself. She made me laugh. Provided support. She is my EVERYTHING. Without her I don't know what I would have done.

My sister. Kathy is my rock. She has helped bandage me up when I couldn't reach certain areas before my surgery. She came every single day after work......and continues to hold down the office while my mom and I have been gone. She always made sure to bring me the best snacks!!! Since being home she has been my on call 24/7 nurse.....going as far as to set alarms to wake up in the middle of the night to make sure I take my pain meds and don't lapse. She even helped the Nurse apply my wound vac today!!! I am proud of the kind and caring woman Kathy is....and so lucky to have her as my sister.

My dad. Who drove from Huntington Beach every single day. Who brought me Portos (which I love) daily....making sure we had all the delish goodies. He has helped me financially with this entire process and has provided lots of love and laughs and endless support.

And lastly, to my friends and family. All of you help keep me strong. Each one of you.....with your texts, messages, visits, gifts, flowers, laughs. All of it. Without such a strong and loving support system, there is no way I would be as strong as I am....tackling this condition head on.

I'll be updating about my recovery. The dr says I'm looking at 2-3 months of recovery time. Strength, love, and endless support will keep me battling!! Until next time.

"Life is tough, my darling....but so are you" -Stephanie Bennett-Henry

Post-Op Magic

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