Thursday, May 30, 2013

3 Years

On Memorial Day in 2010, I was sitting on a couch at a barbecue, telling my friends about this crazy illness I'd just been diagnosed with and how I was meeting with a nutritionist the following week, who had told me not to eat any carbs, dairy, meat, or sugar until I saw her. As someone who lived on pie and BBQ, I found this cruel and unusable punishment for someone who was shitting blood and bleeding from their eyeballs. Hadn't I been through enough? That day, I ate a burger and some chocolate cream pie and that night I vomited until the sun came up. That was the last time I ate red meat or the real version of my favorite food.

I wish I could say that giving up pie was the hardest part of this journey, but in fact, it was one of the easiest. I have spent days wishing I would die because I was in so much physical pain that my eyelashes hurt, and nights scared to fall asleep because I wasn't sure that I would wake up in the morning. I've been poked, and stitched, and beaten to a pulp by doctors, hematologists, and physical torturists. I've had fluid in my lungs, and failing kidneys, and a foot that just wouldn't work. I had swelling in my brain, an infection in my jaw, and lesions that just wouldn't heal. I've had more procedures and surgeries than I can count. All of this was awful, and terrifying, and lonely.

Pie was the least of my problems, and yet it, and other food, was what I focused on, in the beginning. In the early days of this blog, I talked more about what I was eating, or not eating, or wished I was eating, than I did about about my illness. I focused on my diet because it was something related to my illness, but outside of myself. It was something I could control (to an extent). I could choose whether I ate broccoli or green beans, I could pick between almond milk (I don't like it) or rice milk, I decided how I was going to cook my eggs. I've never been very good at giving up control or doing what I was ordered to do, but after my diagnosis, I was left with very little choice; do what we tell you to do, or you will die. So I did, well mostly, and I didn't.

I never understood when people said that the terrible things that happened to them turned out to be the best, until it happened to me. I'm not even allowed to drink Kool-Aid, but if I could, I'd be chugging it. Everything I've been through for the past three years has made me a better person. Being on the other side of it, looking back, I see all that I have learned and overcome, and I am thankful. They say "you have to go there to come back." Well I've been there, I've set up camp there, I saw things there that changed me, and you bet your ass that I'm back.

I'm living a life I'm proud of, a life I never expected, a life that was created out of tough breaks, taking chances, happy accidents, hard work, and blessings.

I've said it before, and I'll say it again, I don't think all things happen for a reason, but I think reason can come from every happening. I think it's up to us to find the lesson in every struggle. I truly believe that pain is necessary for growth, and sometimes we focus so much on the pain, that we miss the lesson.

The biggest things I have learned from my journey with Aspergillosis are:

Find the humor in EVERYTHING.

A large part of the last three years has sucked, especially the first two years, and I learned pretty quickly that moping about it not only didn't change it, but actually made it worse, and made people not want to be around me. I had a choice to laugh or cry, so I laughed my ass off and encouraged others to do the same. I just threw up all over my car? That's hilarious! I just face planted for the 5th time today? That deserves a belly laugh! Lo and behold, the laughing made it bearable.

"If you’re going to be able to look back on something and laugh about it, you might as well laugh about it now." – Marie Osmond

Have faith that things will work out, but don't sit around waiting for them to.

This anecdote will explain what I'm getting at. I choose to trust that whatever lies around the bend is what will be and what should be, but I don't wait around for it to come to me; I continue on my journey and meet it face to face. If along the way, another path presents itself, that I feel is a better option, or someone comes running around the bend telling me to run, or I stumble on something useful, I take those as signs, and accept whatever knowledge they offer. So far, I've made it around every curve.

"Keep on going and the chances are you will stumble on something, perhaps when you are least expecting it. I have never heard of anyone stumbling on something sitting down." -Charles F. Kettering

Surround yourself with good people.

I've had the luxury, these past few years, of seeing peoples' true colors. If you want to see what people are made of, tell them you have a horrific disease, and then wait to see who sticks around. The results are often surprising. There are people I was close to before who I haven't spoken to in years and there were people I hardly knew who came out of the woodwork.

These days, I only keep ties to people who add to my life and I let go of the ones who suck me dry. As I've figured out, life is so damn short, but can feel like ages if you're surrounded by the wrong people. We have a choice about who we allow in our lives and these days I keep company with incredible, inspiring, loving people.

Question everything, and if your heart doesn't agree with it, don't do it.

Early on, my doctors wanted to admit me to the hospital for treatment, and I refused. I didn't tell a lot of people about that, until much later, because I knew what their opinions would be, however I was resolved in mine.

Having worked in a hospital, I've seen patients stuck in drab rooms for months or years, and watched many of them die, and I knew that it was just not an option for me. I still firmly believe that if I had checked myself into the hospital, that I would have never left. I absolutely was not willing to give up my life. If I was going to lose it, it would have to be taken from my cold, dead hand.

Now, there were days that I was at the hospital from six in the morning until ten at night, but I am proud to say, that I never, not once, slept there.

There is a little voice inside you. Maybe it's your soul, maybe it's your Higher Power, maybe it's your conscience, I can't be sure, but it whispers to you. Sometimes you don't like what it has to say, but if you listen, it will sing to you and then you'll know just what you should do.

“Re-examine all you have been told...
Dismiss what insults your Soul.” - Walt Whitman

Let go.

This can apply to all of the above, in some way. Let go and laugh. Let go and let God (or the Universe, or whatever you believe in). Let go of toxic people and situations. Let go of what you know isn't right for you.

It's also good to let go of trying to control everything because you can't. And it's great to let go of your ego, which I had to have smacked out of me- if I'd let go sooner, it would have been less painful.

Let go of the pain, regret, and the past. They are behind you, and if you keep reaching back and flinging them in front of yourself, you're just going to keep tripping on them. I was shocked to discover that once I let go of all the garbage that the space it left was filled with more light and love and life than I knew existed. Trust me when I say that if you let it go, you will be filled with more things of substance than what you gave up.

When all else fails, sing Showtunes!

By the end of my iv and blood treatments, my healthcare team knew to have a device ready for me with some sort of musical queued. Sometimes that meant Disney movies, sometimes it was Broadway shows, sometimes it was box office hits- we watched them all. Most of the time we sang along, and sometimes we just listened, but they always made the time go by more easily. Music makes everything better and even in the worst of times, there is always a song that describes how your're feeling, or that can cheer you up- if you let it. My go-to is Michael Jackson's Will You Be There (from Free Willy)!

"Life is a shipwreck, but we must not forget to sing in the lifeboats." -Voltaire

It's been an incredible journey these last three years. If I could live through 2011 and 2012, I think I can do anything. So far, 2013 has been really good to me, proving that if you just hold on, things really do get better. During the worst of it, in the blackest, darkest moments, I kept my sights on the light at the end of the tunnel, and now I'm standing in the sun and things are going well. So whatever you're going through, and we're all dealing with something, know that you are strong enough to survive it and it won't always be like this. On that same breath, the good things won't always "be like this," either, so cherish them, tuck them in the corner of your mind so you can revisit them when things are tough. Make a mental playlist of what makes your heart sing and replay it when your heart is heavy.

That brings us to today, and an update. I had some blood work and scans done on Friday, to see where my health is since leaving The Bay back in November. The main thing they are looking for is how things are going with maintaining my current health, since I haven't been undergoing any aggressive treatment or blood filtering, just taking oral anti-fungals and monitoring my diet.  If my levels have stayed the same, it is possible that I can go on, as I have been the last six months, for an extended period of time. What will be, will be, and no matter what the outcome, I'll keep singing.

As always, thanks for coming along on this journey. What I said after the first year still very much applies. I can't wait to see what's waiting around the bend.

I made it through this entire post and was about to publish it when I realize that I could throw in a Pocahontas reference!

"To laugh often and love much… to appreciate beauty, to find the best in others, to give one’s self… this is to have succeeded." -Ralph Waldo Emerson

Thursday, May 23, 2013


Last month, my friend and I signed up for a color run, to take place next month, called Color Me Rad. The rad people at the run saw my post about it and sent me some free swag, telling me they were inspired by my story.

How rad is that?! Check it out! Thanks, Color Me Rad!

I've been trying to prepare for the run, seeing that the only physical activity I did for the last few years was Physical Torture (Therapy) and that ended over 6 months ago. I recently went hiking with some friends and landed in the hospital. Shocking, right? One day I'll learn... Probably not, but I'll keep saying it, anyway.

A friend of mine has been telling me about this great climbing spot and I've been dying to go, so we did. Only he didn't tell me what getting there entailed, and I didn't think to ask.

Idealistic, right?
I mean, look at this place; it's amazing! And it'd been a while since I hung out around a hospital, anyway- I was due for a visit.

To give you an idea of what I got myself into...

Steep hills
*Blogger is being difficult and keeps re-sizing the section below. 

In my defense, aside from the fact that I still continue to think that I am capable of doing the same degree of things I did before I got sick, our other friend was also unprepared for our trek. So there!

The hilly hike wasn't so bad. Neither was hopping across a stream on slippery, wobbly, rocks. Our climbing was moderate and I paced myself. The real clincher, and really, to be honest, my favorite thing about this spot, was that you have to climb along a rock wall, around a body of water, and make it across a six foot gap, to get to the climbing area. At the end of the day, when we were ready to head back out, and it came time to make it back across the gap, I was pumped (that's climber speak for exhausted and weak). I realized when I was half-way across, that I'd forgotten to stretch. Rookie mistake. By that point, I just powered through it. The hike back up the hill to our cars felt like Everest.

I stretched when I got home, but it's apparent now that I waited much too long. Oh, and that I overdid it. Hindsight is 20/20!

The next day my ankle was swollen and my thigh was tight, so I iced/heated it all day. The second day after, I couldn't bend my knee, so I stayed in bed with it elevated. The 3rd day after, my toes looked like sausages and my thigh was rock hard. That's when I decided to ask my Mama what she thought.

Cue the blood-clot scare. If I had a dollar for every time it's looked like I had a blood-clot, I'd totally have two dollars! Remember this?

Don't worry, it wasn't a blood clot, it was just my leg being pissed at me. They released my muscles, gave me some meds, and sent me home.

Long story short, I'm going to be smarter this time and work up to the Color Run. My rad swag will be great motivation to do so and I can't wait to show off my tee and bottle around the neighborhood.

And of course, I'll be sure to stretch.

*I literally changed it a dozen times, in various ways, and it won't stop doing it. I'm going to stop trying now, or I really will give myself a blood-clot.

Tuesday, May 14, 2013

McKinze's Crusade

This is McKinze. She is a little girl with Leukemia, which led to pneumonia, which led to Aspergillosis and she is fighting for her life.

Healthy McKinze before
McKinze's Aspergillus infection

Her family is searching for an oncologist familiar with Aspergillosis to treat her and I really hope they find one in time.

Here are links to McKinze's sites:
Twitter: McKinzesCrusade

I can't fathom her having to go through what I went through with Aspergillosis, AND she also has pneumonia and Leukemia. This terrible, aggressive disease needs more awareness so we can prevent kids like McKinze getting, and possibly dying from it.