Friday, May 22, 2015

I'm here.

Five years isn't so long in the grand scheme of things, but for me, the past five years feel like a whole lifetime. And they have been, in multiple ways. While others are looking forward to the holiday weekend and planning what they're going to eat, I'm thinking back on the journey that's brought me here and all I've been through since I was diagnosed with Aspergillosis five years ago.

I made this blog mainly due to the fact that I got sick and tired of explaining to everyone why I was so sick and tired, what was going on with my health, blah-blah-blah; and also to document my experiences. So, I started writing about 5 weeks into my treatment, mainly about what I was eating and updates on my various procedures and ailments. I opted not to go into much detail about the 2-3 months before that, or the physical and emotional (cuz I was really good at being "fine" all the time) trials I had endured/was enduring, mostly because it was too real, too raw at that time.

However, lately being on the other side of things, and watching others I know struggling either with chronic or terminal illnesses, or grief, or pyschosocial issues, or just life in general, I realize I did a disservice to myself and others going through similar experiences by not painting a full picture of what was happening or the severity of it- something I've been great at doing my entire life.

I'm able to be more forthright now, and the topic of my health has come up a few times recently with people who A) Knew me at the time but had no idea what was going on or how serious it was. B) Know me now and want to know why I still count my spoons every day. C) People who knew me then but think I'm magically cured and "fine" now.

Maybe one day I'll write a book and give a well-rounded and thorough depiction about my journey with good ole Aspergillus, or maybe I'll make a film about it someday, but in the meantime, here comes the ugly foreward and beautiful afterward, and there's a whole lot more to it than just me getting a weird illness.

In 2009, I was unhappy with my life, I was drinking myself to sleep every night, and through every weekend. I was incapable of making changes to improve the situation, I was co-dependent on my friends, and I was going through the motions at a job that made me miserable. At the suggestion of a couple loved ones, I stopped drinking, started going to therapy, and joined Alcoholics Anonymous.

Through therapy and AA, I starting facing my childhood molestation, depression, suicidal thoughts, drug addiction, sexual identity, adolescent sexual assaults, anxiety, behavioral issues, etc. and doing the work to repair the damage those issues had inflicted on me and the damage my reactions to them had inflicted on others and my life.

As a result of working to improve my life and myself, in February 2010, I decided to try skiiing for the first time, during which I unexpectedly decided that skiing upright is old news and skiing on your face is the new way to go. What at the time seemed like a minor spill and a scraped nose, turned out to be second degree burns to the bridge and side of my nose that was the cornerstone of a foundation I'd laid to attract a rare and deadly illness.

By mid-March, my nose was inflamed and infected, so I was prescribed antibiotics, which seemed to do nothing for a nose that continued to get sunburned, increasingly oozy, and more disgusting. Because I had been drinking for so long, to suddenly stop caused trauma to my body. My history of anxiety and gastrointestinal issues had causes trauma to my body. Because I was dealing with not drinking and my anxiety by eating high amounts of sugar and dairy caused trauma to my body. Because I had an open wound on my face that wouldn't heal my body was vulnerable. Combine a vulnerable body, under extreme trauma, with prior gastro issues, unhealthy eating, and an open wound, with antibiotics and you've just laid the groundwork for Candida to take hold, which is exactly what happened.

I developed a chronic yeast infection that entered my bloodstream and went systemic, growing in my intestinal tract, nose wound, and appearing as red, raw, rashes on my hands and feet. I was then put on medication to treat the Candidasis, which seemed to help.

By late-March, my nose seemed to getting better, but my energy level suddenly dropped, and the rashes on my hands and feet, and in my lady business became much worse.

By April, I was experiencing joint pain, shortness of breath and coughing up large amounts of mucus. I was told I had a cold because my immune system was fighting the Candida. Things still seemed under control at this point, but what I learned later is that the symptoms were a result of the Aspergillosis growing in my soft tissue.

In mid-April I began shitting blood and my nose got worse again, turning black. Before I could get an appointment with a doctor, I began developing chronic headaches and vomiting blood. I was told it was a result of my IBS reacting to the medication, my nose turning black was because it was scabbing, which was a good sign, and the headaches were a result of stress and being ill for this long.

You know that feeling when you exhale really deeply and someone quickly wraps your lungs tightly in duct tape, so you can never fully catch your breath? That's never happened to you? Okay, well, that was me at that point. I also was incapable of asking for help or letting people in on what was going on. They noticed anyway, but I still tried to be "fine" and not let on how much I was struggling, a trait I'd developed to survive up to that point.

By May, my energy level dropped dramatically and I was rapidly losing weight, which is understandable when you're shitting and vomiting blood daily. At this point I also began coughing up bloody jellyfish. After rounds of tests, I'm told I have bronchitis, but my blood tests didn't indicate anything abnormal, and to rest and give it time. Then the nosebleeds started.

By this point the Aspergillosis is in my brain, spinal column, lungs, intestines, joints, skin, and nasal cavity. In mid-May I started bleeding from my eyes and that's when I freaked the fuck out. The specialists called in the special-specialists, all the tests that cost more than a car were run, I'm stuck with every IV they can get under my skin, and I'm sent home for Memorial Weekend, being told it's probably just an extreme case of Candida and told to avoid sugar. I don't listen and eat BBQ and pie and end up in the ER when my asshole won't stop bleeding.

I am finally given my diagnosis of Aspergillosis and begin treatment, which consists of a two-week colon cleanse, four to six hour long IV treatments three days a week, about 500 different pills a day, and a strict diet of water and vegetables.

This continued through that summer and I slowly started getting better, while the weight continued to fall off. I began to learn to cook under the guidelines of my diet. I continued to work on my issues in AA and therapy and I fought with everything I had. Everything felt like a slow motion movie throughout that time, but frame by frame I kept the story going.

I got a new job that I liked that summer, where they grew an array of organic vegetables and fruit that I could eat, I switched to new oral meds that didn't make me feel like I was schizophrenic, and I began to adjust my attitude and accept life accordingly, even taking back up some of my normal activities like hiking.

I tried to make amends to people I'd wronged and correct my bad habits, I traveled and did the things I wanted to do, I gave away most of my things, I did my best to let people know what they meant to me. I made bucket lists and wrote out wills. I got my ducks in a row, just in case. I lived like I was dying.

The rest of the story picks up in this blog, and it was far from smooth sailing from there. There were a lot of ups and downs, surgeries, organs failing, clinical trials, physical torture (therapy), blood treatments, homelessness, most of the details of which were touched on in the previous entries, even if they weren't fully fleshed out.

There were many days that I thought I was going to die and there were days that I prayed to. And I don't know why I didn't. And life just kept on going. And I was swept along with it.

By October 2012, I was run-down, beat up, and done. I didn't have much fight left in me. I was sick and tired of being sick and tired and I decided to leave San Francisco and go to Texas to spend time with my family. In a way, I was giving up and going home to die. Then I lost two people who meant the world to me and it didn't kill me. And I was told that my health was good enough to stop receiving the heightened treatments I'd been undergoing. And something inside ignited. I went home for a bit and rested, got to know my baby niece, and decided if life was going to sweep me along, I may as well leave the fishbowl of my hometown and jump into the pond.

In January 2013 I headed to Los Angeles and started laying down the framework for a whole new life. Because what else can you do after you've lived like you were dying and then discovered that you weren't going to die? What else is there to be afraid of when you've already lost everything? How dare I give up when I'm still here?

People in my life have died these past few years. A lot of them. And with each one, the more my appreciation for life grows and the less fucks I give about things like swearing, or what people think of me, or what's in the tabloids, or what society says I should be doing, or what I'm wearing, or material possessions, or any of the shit that bogs us down.

Just last week a huge influence on my life, Tom Stoker, died, and another, Allen Patterson, was given a terminal prognosis. Both of these men taught me more than I can ever express, and both of them were able to be present at what Allen calls "a pre-funeral" where their lives were celebrated with those who love them. I wish we had more opportunities to celebrate our lives like that. I wish it didn't take the threat of death to make it happen. I wish we didn't waste so much time.

Allen posted this in his blog:

"But folk, please don't ever, ever, ever waste your time in being too safe. 
You know that idea you have of a better way to fix broken windshields?  Do it.  Start that business.  That book you've always wanted to write?  Those earrings you want to start designing to sell online? 
Do it now.  Yeah, people might laugh.  Who cares?  There will always be people willing to wait in line to laugh at your ambitions.  Let them be the ones to be safe. 
Whether you know it or not, you too, are working with a short clock. 
If you can to one thing right now for me or for yourself, don't be safe."

So if I've learned anything from the past five years and if I can impart any wisdom to you, it's this: LIFE IS SO DAMN SHORT. FOR FUCK'S SAKE, JUST DO WHAT MAKES YOU HAPPY!

Which is exactly what I've been trying to do since moving to LA, and why I haven't been posting on this page much. I've been out there doing what makes me happy.

And it hasn't been all sunshine and roses- I've gotten sick, and I've re-injured my foot, and I've had jobs I hated, and shit has happened, but I've been happy and mostly healthy, because I decided I still had more fight in me. Because I stopped holding things in and I tried new things and I met new people and let go of others. Because I faced my demons and owned up to my mistakes and try to correct my wrongs. Because I realized that no matter what life kicks in your face, if you're still alive, it's not too late. Because life is too short and too precious to waste. So, if you aren't happy, it's not too late; talk to someone, change something, look for the silver linings.

I'm working on projects that challenge me, and creating things, and spending time with people I enjoy being around, and learning from people who inspire me, and helping people who do good things, and I'm working hard, and I'm letting loose, and I'm getting shit done, and I'm loving it all.

And I still can't eat everything I want, and sometimes I try and it gives me diarrhea, and I get annoyed when people ask me why I can't eat ice cream today even though they saw me eat it a month ago, and my back and hip hurts all the time, and I still have a bee in my toe, and if I get even as much as a cut or a sore throat I get scared, and I can't write or draw for more than like 30 minutes a day because my thumb goes numb, and I have to sit or lay in bed for at least 12 hours a day (but more often 16) and if I don't I need two days to recover, and my humor is too dark for most people, and that's all okay, because I'm here. I'm alive. It's not too late. I'm not playing it safe.

Loving Life on my 30th Birthday!

1 comment:

  1. If I didn't know you, I would be devastated and feeling so sorry for the blogger who wrote this. But I do know you - your strength, your caring, your brilliance, your humor, your beauty and all those parts of you that are still very healthy thanks to the huge fight you put up. Now I am even more grateful to be in your orbit - as both of us orbit around the sun. I'd say I hope you outlive me, but I'm so old that's not nearly good enough!! -- Lenore