And I would walk 500 miles

...and I would walk 500 more.

Today I walked over six miles through the streets of Los Angeles. A year ago I couldn't even take six STEPS and now look at me go!

I am so happy with how far I've come, and excited to see what else I can do.

And so it goes

In the last few weeks, I've said goodbye to two of my most favorite people. One, my best friend, I lost to life. The other, my Gran, I lost to death. Both of which were out of my control. They both loved and supported me in everything I did. Now there is a gaping hole in my life where they once were.

In a week, I will say goodbye to more of my favorite people, as I embark on the next path of my life's journey and leave this town. This was a choice I made based partially on things out of my control and partially on controlling my own future.

No part of any of this has been easy. It's been hard. Really effing hard. Actually, that's not even enough. It's been excruciating. I am raw and laid bare. I'm heartbroken.

And yet, I'm okay. Or I will be.

I'll be okay, because I'm alive. And because I have a blank canvas in front of me just waiting to have paint thrown on it. Because I have people who love me and believe in me. Because:

"Every change, life has thrown me,
I'm thankful, for every break in my heart,
I'm grateful, for every scar,
Some pages turned,
Some bridges burned,
But there were lessons learned.

And all the things that break you,
Are all the things that make you strong,
You can't change the past,
Cause it's gone,
And you just gotta move on,
Because it's all,
Lessons learned."
-Lessons Learned, Carrie Underwood

I'm moving on. I have a lot more living to do.

Holy Mother of Updates

I've said in several previous posts that I would expound on various subjects later and haven't gotten around to it, yet. Oops. Life has been throwing me curve balls and having me jump through hoops, lately, so I haven't had much chance to keep people updated on everything. I can barely keep up with myself, these days.

Here's the skinny...

I can:
-Regulate my own body functions performed by my lungs, kidneys, intestines, etc. (HUGE deal)
-Jump (sorta- I have the landing down, the take-off is still kinda rough)
-Run (it ain't pretty, but I can kinda, in a weird way, do it)
-Ride a bike (I rode all by my self on Monday!)
-Stand all day long
-Walk for a few hours
-Go weeks without throwing up, getting a bloody nose, or coughing up small woodland creatures
-Be outside for more than 10 minutes without my skin cracking and falling off

I don't have to:
-Measure out every thing I eat
-Manage my blood sugar
-Do blood filtering very often

I still:
-Get winded easily
-Feel a buzzing in my toe at all times
-Have to watch what I eat
-Get infections a lot
-Probably can't eat that
-Have hope that I'm going to beat this thing

I am:
-The least moldy I've been (my fungus is dying off!)
-Getting physically stronger
-On normal Candida levels (my yeast is back in check!)
-Exhausted
-Quitting my day job (tomorrow's my last day)
-Starting a company with my business partner (we've been working on it for about a year, now it's kicking off)
-Moving to TX for a bit and then moving to LA at some point I told you big changes were coming...
-Grateful
-Blessed

I'm headed to Texas for a wedding this weekend, for a week. Then I'll be back in San Francisco for a week. Then I'm off to LA for a week or so. Then to Texas indefinitely.

There. Consider yourself updated.

What A Difference A Year Makes

A year ago, I was on bedrest, fighting a raging infection in my jaw. A month ago, I was at The Daytime Emmys, talking to Susan Lucci.

A year ago, my foot was a crumpled, useless mess. Today I walked barefoot, without assistance, across a room.

A year ago, I was having tubes stuck down my throat, and up my ass, and in my veins. Today, I can go up to a month without having anything stuck inside my body.

A year ago, I was having my jaw sawed apart, and my mouth rearranged and put back together. Today, I can chew on both sides of my mouth.

A year ago, getting to eat butter was the "best" thing I had going for me. Today, I can eat so many more things!

A year ago, I couldn't go longer than a week without throwing up. Today (I'm probably jinxing myself), I haven't vomed in over a month. *Knock on wood*

A year ago, I was struggling to decide my next course of treatment. Today, well... okay, not everything has changed, but you can't win them all!

Wow, what a difference a year makes. I think it's important for me to look back, to compare what life is like now to what life was like then. I still have a ways to go, but I sure have come a long way.

How I'm still doing it

The question I am asked the most in regard to my health is "how do you do it?"

I mostly shrug or laugh this question off. I make light of it, because it puts others at ease, and because it is a means to distract myself from the weight of the question.

Sometimes, I say "I don't know," because honestly, I don't. There are times I am bewildered that I was able to peel myself from my bed at all that day, so your inquiry is just as baffling to me as it is to you. I really wish I knew!

I wake up each day with every intention of combating whatever beast is running at me, but sometimes I find that instead of a sword, I've been equipped with a shoestring.

Many times, on those kind of days, I simply tie a pretty bow around my woes with that string, tuck it under my pillow, and admit that my only triumph for the day will be my ability to sleep through it. On those days, the only way I can survive, is to admit defeat, roll over, and go back to sleep.

Most of the time, however, I am not offered that choice. I have physical torturists to see, flesh to be punctured, children to pick up from school. On those days, I tie that string around my waist and pull myself forward. If I haven't the strength to do it myself, I ask if someone else can pull me. And if no one is able to, I tie it to a remote control car and whip out the remote. I am constantly, daily, looking for new ways to do things- more efficient, less tiring ways to get what I need to get done, done. Sometimes the remote control runs out of batteries, but I'll at least try.

Then there are the days I wake up with a blowtorch in one hand and a chainsaw in the other. I charge at the day, full speed, and slay every dragon in my path. But, I can't plan those days. They don't always happen when they should, despite how hard I will them to be. I never know what each day will throw my way and I never know if I will be hitting home runs, or striking out.

My main line of defense has always been and will probably always be my ability to make fun of any situation and myself.

"The only way to get through life is to laugh your way through it."
-Marjorie Pay Hinckley

So that is how I'm still doing it. By laughing my way through.

"Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." -Bill Cosby

And that's the only answer I know, the only solution I can give, because sometimes life is hard, and sometimes it downright sucks. Sometimes it just won't let up and sometimes you can't even stand up, but you can still laugh your way through and that's the best you can do.

"If you can’t find humor in the shit life heaps on you, you really will grow miserable."
-Sherrilyn Kenyon, Born of Night

If you can laugh, you'l always make it through.

So Now What?

So since the blind clinical trial crashed and burned, this time around I'm calling the shots. This week, I went back to a medication I've used before called Voriconazole. We know it works, so I'm taking it as a buffer for a month and then I will start a new medicine.

Voriconazole works, but it also makes me feel like total, utter, poopy-shit. When I used to get it intravenously, I was walking roadkill. Taking it orally was a little better, but not by much.

I selectively forgot about that small detail, but was quickly reminded. My stomach feels like it's on a spin-cycle and if my joints were peanut butter, they'd be the crunchy kind.

I spent all morning in the fetal position in my bed, watching All My Children clips on YouTube; and all afternoon in the fetal position on the couch, cuddling with a five year old, listening to Sara Bareilles. If I can continue doing that for the rest of the month I'll be set!

Le Chaim

As of yesterday, I've gone an entire year without drinking alcohol.

It was something I needed to do, for myself, and it wasn't easy. It's been a very long, hard year, both working through the things in my past that led me to drink, as well as facing this illness and other woes, without being able to find solace in a bottle.

I'm choosing to mention this accomplishment here, because it directly ties into my journey with Aspergillus. I'm not going to go much into detail about my drinking days, because that's not relevant, but I will say that there are huge parallels between my recovery from alcohol and my being able to cope with my current health issues.

In recovery, I've been doing the AA 12 Step route, I've been going to therapy, and I have put everything I have in the hands of something outside of myself. In AA, we call this our Higher Power, and each person formulates their own definition of what this means to them. For me, it wasn't the "God" I'd grown up being told I should believe in, but rather, an entity outside of myself embodied by love.

Throughout this illness I have employed the coping skills I've learned during my recovery and I don't believe I would have been able to deal with any of the things it's thrown my way had I not been in AA and therapy, or, most importantly, if I hadn't placed my entire life in the hands of my "God."

I've worked the 12 steps around food and resisting cravings and temptations, just as I did with my addictions: I have recognized, categorized and let go of my resentments for this illness. I have accepted that there are many things that are out of my control related to my health and my life. I have learned to express my gratitudes rather than my gripes. (This does in no way mean I don't have bad days, or that my sarcasm has waned even a little bit, but for the most part, my tune is far cheerier these days than ever before.)

Multiple people have asked me how I stay so strong; how I seem to be happier now than the surly, cynical person I was before; and how I am coping with all the shitty things occurring in my life. I have two responses to that: "Just keep swimming" and "Bitching won't solve my problems." Basically, if I put those phrases into AA rhetoric, I "take it one day at a time"(or sometimes one hour, one minute, one second, one breath...) and I "accept the things I cannot change." There, that's my secret.

I don't know what's going to happen, so there's no point getting bent out of shape worrying about what might or could occur. I just put one foot in front of the other, I tackle head on everything that's put in my path, and I keep going. I trust that something bigger than me has this all under control and everything will work out the way it's supposed to. Maybe that plan won't be what I would have picked and maybe my path won't lead me to where I'd hoped, but I'll be damned if I'm not going to enjoy myself along the way.

I must also say that had I not stopped drinking when I did, had I not had four months sober when I first got sick, or six months when I was diagnosed, I would have literally drank myself to death. My body just would not have been able to handle the yeast and sugar and my heart and kidneys would have failed me. I think that the fact that I got sober when I did was an act of God.

It may sound silly, but this illness has been somewhat of a blessing to me. It has allowed me to grow in my humility, grace and appreciation for what's truly important. It has shown me how loved I am and how amazing the people in my life are. It has reminded me that life is a daring adventure and to seize every single opportunity I'm granted, because you never, ever know when it will all be taken away.

"May you live all the days of your life." -Jonathan Swift