Thursday, May 31, 2012

Park City Plates

I spent the majority of this month traveling. This usually equates to living off oatmeal, nuts, and cheap salads. Oh boy!

I was in Park City, Utah last weekend for a film festival, armed with my almonds and oats, as always. Surprisingly, I found things I could eat.

Spinach salad with strawberries

Crudité at one of the receptions

Rice noodles with tomoato/garlic/basil seasoning. Made by us in the teeny hotel microwave with some ingenuity. We only exploded one wine glass (wasn't by me, actually!) and nobody got burned!

More banquet food

and I also had a handful of strawberries before one of our screenings, which I promptly vomited all over the sidewalk outside the theater (I have a photo if anyone wants to see the mark I left on Utah). Not so Bren-friendly, after all.

Aside from the strawberry incident (hey, it happens) and the forecast changing from "mid 70's and sunny" when I packed to "29 and snowy" while I was there, I got plenty of sleep and had an easy trip...

...then, I came home and tried to re-learn how to ride a bicycle. More on that coming!

Thursday, May 24, 2012

Dear Aspergillosis: Happy 2 Year Anniversary!

Here, I got you this cake I can't eat- that's love.

Dear Aspergillosis,

Happy Anniversary! Yesterday marked two years since I became yours. You'd already conquered my heart by then, after only being in my life for a few months. I've heard it said that sometimes your lifelong relationships are the ones that catch you by surprise, when you least expect it. And surprise me, you did! I never fathomed you, never dreamed you would come in and change my life forever, never knew what life could be like with you at the forefront.

You, with your challenges and stubbornness rivaling my own. You, with your humbling ways and air of mystery. You, with your beauty and grace. I wasn't expecting you.

Has it really only been two years? It feels like a hundred, sometimes! We've been through so much, you and I. I would've written you yesterday, but as you like to do, you had me in bed early, as you had other plans for me. You are always full of surprises!

The person I was before we crossed paths would have hated you. In fact, when I first learned your name, I did. Then you grew on me. I didn't have much choice, actually. You knocked me off my feet.

You aren't easy to live with, Aspergillosis, but you've been worth it.

It has been quite the storm we've weathered, so far, and I want to thank you for the things you have brought to my life. You showed me where there were leaks in my boat and now that I've patched them, nothing life throws my way can sink me. You taught me to surround myself with people who are umbrellas shielding me from the rain, and to avoid people who are buckets looking to dump themselves onto me. You remind me that life is cyclical, and that tides come and go, as do hardships and joys, and to always keep an eye on the horizon because you never know what might sail your way.

You have given me my money's worth of this life. You have expensive taste and sometimes I think you will take me for all I am worth, but then you pay me back in experience and wisdom, in courage and strength, and in love and light. You have made me rich in gratitude, joy, and awe, things money can't buy. When the grass looks greener in other's pastures, you take my straw and spin it into gold. You encourage me to seek out diamonds in the rough and your storms polish my shattered pieces until they shine. You have been worth every penny and the life I now have is priceless.

I love you and the life we have created together. I really don't think I could have done it without you. You are the best thing that has ever happened to me and you have made me a better a person. Thank you for coming in and changing my life.


"I feel a very unusual sensation - if it is not indigestion, I think it must be gratitude." -Benjamin Disraeli

*May 23, 2010 is the day I was diagnosed with Aspergillosis

Wednesday, May 23, 2012

Paralyzed Woman Finishes London Marathon

Yeah, you read that right.

Read the article on this incredible woman!

Crazy, right?

How inspiring and uplifting and awesome! I think this is a good reminder to us that no matter what your circumstance, no matter what your difficulty, you can achieve your goals if you persevere. If you put your heart and mind to something, regardless of your physical complications, you can find a way.

“We are all in the gutter, but some of us are looking at the stars.” - Oscar Wilde

Thursday, May 17, 2012

Does my ankle look fat?

Putting my feet up after a long day of walking all over NYC. I will go easy on my poor swollen ankle tomorrow, promise!

Monday, May 7, 2012

Stinko de Trial

On Cinco de Mayo some of my closest friends had a Stinko de Trial slumber party in my honor to commemorate the tragic end of my recent clinical trial.

The party was complete with Bren-friendly snacks, gifts, and Glamour Shots!

The players:

Based on this amazing Troop Beverly Hills moment:

Inspired by this "Welcome To My Home" Brenda Dickson awesomeness:

And then we retired back to the mansion for the night...

I haven't laughed that hard in a very long time- the best medicine and cure for the blues a girl could ask for!

Nanner nanner boo-hoo

Made 3 dozen banana chocolate chip muffins with the kids, today... didn't even cry!

Friday, May 4, 2012

Meal of the Moment

Fresh, homemade guacamole and fried eggs.

Eggs: I just heat some oil in a skillet (olive, safflower, grapeseed, whatev), crack in a few eggs, and let them sit until the whites are no longer runny.

Guac: I spoon an avocado into a bowl, squeeze some fresh lemon on it, add a pinch of salt, and mash and mix it all together with a fork. Voila!

I probably eat this 5 times a week, and surprisingly, I'm not sick of it...yet.

Thursday, May 3, 2012

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!

Wednesday, May 2, 2012

Ch, ch, ch, chaaanges

Rewind to about two years ago:
"Here have some of this (insert food item here)."
"I'm not allowed to eat that."

And so, this blog began...

We're rounding the corner on two year of blogging. Whooo, party! Given how much has changed during that time, and as a sort of celebration, I'm changing things up a bit around here.

First of all, this blog started out as a way to cope with my diet. It was meant to fend off being asked the same questions repeatedly; to cope with my new way of eating; to experiment with new foods; and to provide some levity to a very serious situation.

Then, it also became a place for updating people on my health. Again, it was a source of answering the barrage of questions in one place; a way to cope; to talk about experimental treatments; and for some escapism from the difficulties I faced.

Along the way if became a place of refuge; of hope; and of connecting with people who know me, or know similar situations, or who simply found a common bond.

I have used this space to rant, ask for help, rejoice, and laugh. I've grown and changed along the way, and now it's time for the blog to morph a little, too.

What's changing:

The name "Food Withdrawl"- While I'm always going to be experimenting with, and seeking out new foods and recipes, I'm not in withdrawal anymore. Also, not ONE person ever got the pun in the name, or even noticed that it was either a play on words or misspelled- which has bugged the crud out of me!

In his autobiography, pacifist and philosopher, Bertrand Russell stated, "This has been my life. I have found it worth living."

I chose to rename this blog after that quote. Despite everything that has happened thus far, and all the horrible things that I have been through: the pain, and surgeries, and organ failure, and struggle; the goodness, hope, love, and beauty I have experienced have far outweighed it. This has been my life. It wasn't what I would have chosen, but it has gotten me to where I am, and it has made me who I am. And I think it's been worth it.

The layout- I got tired of those vegetables. Really, can you blame me? If I never see another vegetable for as long as I live...

What's staying the same:

The recipes (hopefully I will post more of them), the pictures of what I'm eating, the updates on my health (hopefully less of them- no news is good news, yeah?), the quips and sarcasm, the refuge, the connections, the hope ("You gotta give em hope!" -Harvey Milk)...

So here's to another leg of this journey that started with a single step back in June 2010. Since that time, as of right now, this blog has been viewed 8,818 times. While a seemingly small number in the grand scheme of things, and blogs, I'm very thankful that people have cared enough about what I'm writing (other than my Mama, who probably accounts for about 1,000 of those views) to visit this page so many times. I really love when you comment, too- it makes my day, every single time. Thanks for being a part of the journey. It's been more than worth it.