Saturday, May 25, 2019

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

Wednesday, May 22, 2019

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


Thursday, April 18, 2019

Timing. Pt 2

So my last post was about timing. How you should never doubt the timing of your life. Well the craziest and most random thing happened to me last week.

I was out with my friend Sam at Panera.....which is OUR spot (something about that Plum Ginger Hibiscus tea gets me). While sitting on the patio, I noticed a man get off the bus in the middle of the street. Carrying papers.  A huge stack of them. White. Yellow. Pink. Then I saw it....the wrist band. That's when I realized this guy was probably just released from a hospital.

Anyone that knows me knows I'm vigilant. I can spot anyone at any time. I'm always mindful of my surroundings.....and I knew it was a matter of time before I came into contact with this man.

He walked up to our seating area, but not up to Sam and I......which I honestly thought he was going to. A minute or two later, a man and woman exited the Panera. He walked up to them and asked to use their phone. I couldn't hear much of their conversation, but from what I gathered he was 1) recently released from Loma Linda Behavioral and 2) had no idea where he was.

He hung up the phone and the couple walked away, and as they did they shot me a look. One I've seen before. One shot to my family and friends......when manic Jackie has decided to pay everyone a visit. He turned toward Sam and I and walked up to us. That's when he looked at me and asked "Do you know where Canyon Ridge is?"

--- Of course I know Canyon Ridge. I stayed there in 2006. The first time I was diagnosed. My first episode. The first time I realized I was and always would be different ---

I answered "Yes. Want me to call them?"

I called Canyon Ridge and explained what was going down. At this point, my new friend Kory had explained everything. He woke up at Loma Linda, no idea how he got there, thinking his name was Brad. We confirmed on his license.....it was in fact Kory. Canyon Ridge stated that while they could perform a psych evaluation and admit him based on necessity, they were a private facility and my friend Kory (without insurance) would be paying upward of $950 a night, with a $4,500 deposit.

Obviously this wouldn't work...and that's when they told me about Merrill Center, a short stay crisis stabilization unit. I asked Kory if he would be interested in going there, to which he replied "Yes. I just want help." I've never felt a sentence more my whole life. We called Merrill Center and spoke with admissions. Kory met the criteria for the unit. They would perform a psych evaluation, figure out the next best location for Kory to go, and provide him a safe space to sleep and eat until he made his transition.

I called Kory an Uber and 13 minutes later we met Rosalia, his friendly Uber driver. Kory cried and said he would never be able to repay me for what I had done for him. I cried too and chalked it up to just being in the right place at the right time.

Life is fucking weird. I had no intention of meeting Kory that night. I was at Panera with Sam...chatting about life, when instantly my life was changed when Kory crossed my path. I feel like we were both placed in each other's way for a reason. Something much larger than ourselves and what we could ever understand.

I was placed in Kory's path because I AM Kory. I've lived his life and walk in his shoes. I've been fortunate to always have the love and support of my family and friends. I've never needed to worry about being alone.....because I've been beyond blessed to never ever walk through life alone.

Kory was placed in my path because I AM Kory. He was my reminder. Of where I've been and exactly how far I've come. I've worked so hard to make sure I am ok. Not allowing my disorder to take over or control my life. While it will always be part of me.......I am in the driver's seat.

Timing is crazy. You never realize when you will cross paths with someone that needs you as much as you might need them.....without ever noticing how deeply you each needed it. Never ever question timing. God has mysterious ways of showing himself to you......and it is always when you least expect it.

So this one is for Kory. And for all of us like him. Maneuvering through life.....slightly lost....occasionally alone....but never without someone to help us when the going gets rough.

Next time you're out there.....remember we are all living life. Even if our situation seems different, or the grass seems greener, it isn't. We are ALL battling something....silent or not. So be kind to one another. Take the time to listen. Take a moment to be helpful. You never know when your small gesture could save someone's life.

Oh and yeah.....11 minutes later Rosalia text me that Kory made it to Merrill House safe.....and with a smile.

"Do things for people not because of who they are or what they do in return, but because of who YOU are" - Harold S. Kushner


Monday, March 18, 2019

Timing........is everything.

Life has been moving people. Just moving right along. Pretty fucking quickly if you ask me. Like HOW are we already in the middle of March?!!?

I've been so busy lately. I find myself struggling in my attempt to stay up to speed with the rate my life has been moving lately.

Just to update....I've finally been cleared to see a surgeon regarding my HS (that autoimmune condition I was diagnosed with a while back). Apparently I've reached stage 3 and the only option now would be surgery......which is both exciting AND terrifying. I see her this week so I'll know more of what I'm looking at moving forward then. To be clear - Stage 3 doesn't mean I'm dying or anything. It just means every round of treatment has failed and the condition continues to get worse.....meaning I'm going to need surgery to remove all sections of affected/scarred skin in hopes of reducing the amount of flare ups I'm experiencing.

I've also started a medication change. Lithium has been so amazing to me for so many years......but it is starting to take it's toll on my body (kidneys, liver, hair). Lithium therapy is also one of the BIGGEST triggers (next to tomatoes), that really affects my condition. I've been looking into the switch for a while now. My reality is that if I continue on lithium, I'll eventually need a kidney transplant. Once I discovered all of the day to day items affecting my HS, I decided to start eliminating them in hopes of reducing my flare ups. So now that I've confirmed that surgery IS on the horizon at some point, I've decided to venture out and try a new medication. I started the new meds last week, and will begin working to taper down the Lithium in the hope to be completely off it and fully transition to the new medication in the next month or two.

I can't even begin to discuss my fear when it comes to all I just updated you on. I'm overwhelmed, terrified, worried, nervous.....just a million thoughts and emotions I'm running through at any given time. I find myself having panic attacks more frequently because I just feel like this is all A LOT......but then I remind myself how much I have been through.......all of the things I've endured to get to this place in my life. This place of stability, comfort, happiness, and peace. I've come too far and pushed myself through SO MUCH bullshit to not continue to trust in the timing of MY life.

Never doubt the timing of your life. Trust in it.

I've been dealing with certain issues for many years.......and after fighting a rough fight, things are really starting to turn in my favor. Work is BEYOND busy, which is such a blessing. The bond with my family and friends is closer than ever. I'm allowing myself to catch feels again (which I literally felt would never happen again after the shit show that was my last relationship). I've got several things lining up......and while the unknown is terrifying as fuck, it is equally, if not more, exciting than anything.

Yes. I'm fucking nervous. DEAD ASS nervous. Fucking terrified. But I'm hopeful. And feeling so beyond blessed that these opportunities are presenting themselves to ME. I'm learning to trust in the timing of my life.....and put faith in the process.

Sometimes life is overwhelming. More often than not it's beyond overwhelming. But we have to trust in the timing of our lives. We have to know that people enter and exit for a reason. Doors open and close.....opportunities present themselves when we least expect them, but are so ready for them.

Life is unpredictable. Seriously. You could plan your WHOLE FUCKING LIFE OUT......and then a wrench gets thrown in.......flipping your script in the blink of an eye. When something gets placed in your lap......embrace it....figure out the way YOU feel is best to deal with it.....and TRUST in the timing. Remember that nothing is ever too much to handle or deal with.......especially when you have supportive family and friends to help carry the load when it is too heavy for you to do it alone.

Be present. Be in the moment. Experience life. Remember that even when in the deep of it.....the tide always turns. The timing, no matter how off it appears, always has a purpose. Trust in that purpose. Put your faith in what is greater than you. And know you've GOT THIS.

So next time life throws some wacky ass shit your way.......take a step back to process it....understand it.....and trust in the timing of it. There is a reason for it. To teach you something about yourself. To reaffirm your confidence in yourself and YOUR abilities to handle the shit life throws your way. To allow you to give a life lesson or support to someone else. Whatever the reason is......it will reveal itself when the time is right.

So trust in it. And yourself. Because you're pretty great and just like I know I'm gonna handle all this shit like a BOSS..........I know you can handle anything too.

"You can't always wait for the perfect time. Sometimes, you just have to dare to do it because life is too short to wonder what could have been" - unknown