The Good, The Bad, (and The Bloated.)

I'm sorry I haven't posted in a while, it's been sort of a stressful year. Don't get me wrong there have been lots of great things happening, but my health has been questionable lately and it's hard to juggle classes and homework along with taking care of my food issues. Anyway, here's a little update on what's been going on in my life over the past few months, I'm sure I will elaborate on it all in the future.

The Good:
I really have been having a good year despite all the ups and downs. I love my classes, especially my master class. I always leave totally inspired and in a good mood. I love my friends, I have a great roommate and I feel like I'm learning a lot.

I've been working with a great friend of mine, Mike Hart, who has been helping me arrange the music for my original musical "Alice Unraveled". Mike is a super talented composer who usually works writing film scores and epic metal pieces. (You should check out his blog!) He brings a really cool point of view to the project, as he comes from a completely different musical background than I do, but his ideas are great and add so much life and color to my songs. Our collaboration is causing both of us to stretch creatively, and I can't wait to see how the show will unfold.
I'm planning on putting "Alice Unraveled" on next year as my senior project. I have so much to organize for it and am still searching for a director, actors, designer, etc. I know it will all come together eventually though, one thing at a time.

In addition to all that I have been working with James Perella (another great friend and excellent producer) on my Junior CD. We're planning on recording ten-ish songs this semester with full arrangements and the whole shebang. It's going to be nice to have a new cd out. I haven't done a full album since "Under the Lens" which I recorded my senior year of high school. It'll be great getting into the studio again.

The Bad (and the Bloated):
As you know if you've read my other posts I struggle with multiple food intolerances. I discovered my intolerances to gluten, casein and soy this summer before my junior year of college. Unfortunately, the intolerances just keep piling on. It seems that if I eat too much of a particular food I develop an intolerance to it. I am now having trouble with eggs, corn, all grains, nightshades (potatoes, tomatoes, eggplant, etc) and possibly legumes and almonds along with my preexisting intolerances. Needless to say it's been very difficult to deal with. I have to cook all my meals in my dorm (with just a microwave) and have increasingly limited options. So that has been worrying me a bit.
Recently as I was searching celiac forums for advice I stumbled upon something called Lectin intolerance. I still don't know too much about it and there is not a lot of information about it online but it does seem to fit my symptoms. A lot of people have discussed it on celiac forums and it seems to be more common than doctors think. Unfortunately the only advice I am finding is to eliminate the foods that trouble you and possibly try to reintroduce them in the future. Right now I'm living on vegetables, fruit, coconut, fish, turkey, turnips and sweet potatoes basically. But I'm pushing through it and hoping that this limited diet will help me. Honestly I just want my energy back. I can deal with a limited diet as long as I can be healthy and happy again.

If you're interested in reading about lectin intolerance here are a few links:
http://www.krispin.com/lectin.html
http://www.allergy-details.com/food-allergy/allergy-lectin/
http://www.gfreefoodie.com/what-are-lectins-and-could-i-be-allergic-to-lectins/

Well that's all my ranting for now! I'll be posting again real soon :)

Weight Loss and a Song

So I hadn’t really noticed how severe my weight loss was until my Dad showed me this video he took of me performing last summer.

My face is so much fuller in this footage, my arms look thicker and there is a glow in my eyes that I haven’t seen in a long time. I forgot I used to look like this.

I guess since it all happened so gradually I never even noticed my body changing. Sure, I knew I seemed a little thinner, my jeans were looser and my chest was smaller, but I never saw how drastically different I look now. I can see why my family was so concerned when they picked me up from college. The video really startled me. But it was a good reason to treat myself to a little coconut chocolate ice cream. Yum!

This song is called "October Snow". I wrote it my freshman year of college. The song was inspired by the custodian who cleaned my hallway. I'm an early riser, so I got to know the cleaning staff pretty well. I was always up when they were mopping the bathrooms. Our custodian was a very sweet woman who would always smile and say good morning to me but she had a deep sadness seeded in her face, a heavy tiredness. I wrote "October Snow" hoping to bring out what seemed to be her story, a story of loneliness and isolation. I think sometimes we overlook people, people who work hard, just because they are foreign. So many immigrants feel secluded because they are not always respected in the way that they should be. People are just people, we all go through hardship, and we all feel joy. We are all basically the same. I hope this song is a relatable, human narrative.

"October Snow" Lyrics:

The girl with the brown paper bag kicks the leaves on the ground

To watch them separate like the waves of Sinaloa

Her shoulders slouch and round and fold her body inside out

As October snow collects on her scalp

And weaves it’s frozen fingers through her hair

She wears her powdered sugar crown

A little less often now

A little less often now

Feeling two-dimensional she wraps her arms around herself

And tries to squeeze the noise out of her ears

Stuck in a Chinese finger trap the more she moves the more the world reacts

And tightens its grasp

She runs her frozen fingers through her hair

And stares into the sky

Stretching with her eyes, she wishes that her feet weren’t anchored down

And she sees angels dressed n ragged clothes

Hanging on a laundry line

Their flimsy angles frantically flip in the wind

Pinched by clothespins

And she says “even they aren’t free to fly when they please

Tethered to that twisting string

If I were an angel I would wear my wings like a shawl on these cold autumn days

Cause Mexico seems so far away

So far away”

The girl with the brown paper bag kicks the leaves on the ground

To watch them separate like the waves of Sinaloa

Her eyelids trace the ground

A refuge for her doubt

She wishes that her feet weren’t anchored down

And weaves her frozen fingers through her hair

She weaves her frozen fingers through her hair

She wears her powdered sugar crown

A little less often now

A little less often now

I am so stupid.

My mom and I spent hours in the kitchen this afternoon. My best friend was coming over for dinner and I wanted to make her something special that we could all enjoy.  So I flipped through “The Flying Apron’s Gluten Free and Vegan Baking Book” to find the winning recipe: Italian Mushroom Apron Pockets. Delicious. We made our own gluten free, vegan dough; we sautéed onions, peppers, garlic, mushrooms, sundried tomatoes, beans and spices in olive oil; we formed the dough into rounds filling each with marinara sauce and the vegetable mixture; we turned each round into a beautiful pockets and brushed the tops with oil and oregano; then my eyes caught a little green label on the back of the marinara sauce jar. Allergens: Contains Milk.

My heart sunk. How could I have missed this?

At first I denied that there was anything wrong. I can try and eat it right? It’s only a tiny bit of Parmesan. How bad could it be? But deep down I knew I shouldn’t test it. I have finally started feeling better. I would just make myself a leftover chicken taco.

I guess I should start at the beginning.

I have been sick all year. Since I started my sophomore year of college I have lost twenty pounds, dropping from 102 to 82 pounds in seven months. I was constantly nauseous, achy and short of breath and I developed an itchy red rash all over my body. I was depressed all the time and felt so sluggish, like I was walking into a windstorm. Everything seemed like a chore. The only thing I enjoyed was writing music and even that felt harder than usual. I just couldn’t concentrate on anything.

My parents said it was stress, probably related to my scoliosis (I got a back brace at the start of this year) but I knew my back couldn’t cause this. Something was wrong. I thought I was losing my mind.

Through trail and error I began to realize that my symptoms were food related. At first I thought I was lactose intolerant so I cut out all lactose from my diet, but after a reaction to some lactose free rice cheese that contained casein (a protein found in milk) I discovered that it must be casein intolerance. I stopped consuming anything that contained even trace amounts of casein and immediately started feeling better but was still not feeling one hundred percent. A few weeks later I had a reaction to soy sauce. At first I thought there might be milk in the caramel coloring but after a reaction to some Italian bread a few days later I suspected gluten. I have since removed all gluten from my diet and that has seemed to help a lot. My stomach symptoms have cleared up, my rash is gone and I finally have energy again. Of course there have been accidental cross contaminations but on the whole I am much better and have started gaining weight again.

I am still in the process of trying to get some sort of a diagnosis. I think I have celiac’s disease but so far all of the tests have come back negative. I’ve had 18 vials of blood drawn in the past month and still no definite results. After going on a two-week gluten challenge (I had to consume gluten again for the tests to be accurate) I had an upper endoscopy but that also showed nothing. It’s pretty frustrating sometimes but I am certain that gluten and casein are the problem; the doctors just haven’t found it yet.

I guess it doesn’t really matter as long as the diet is working. I am getting stronger and feeling better and that is all that matters. I don’t need to know what to call my problem as long as I can solve it.

I have started this blog to share my stories and thoughts as I go through the process of being diagnosed. I will also be posting allergy-friendly recipes, talking about general everyday life things and linking to my music. I am a music composition major in college and through all of this music has been the only thing that has always brought me peace and calmness. It is my stability, my love, my way of expressing myself and reaching out to other people. I hope this blog will inspire people who are struggling to keep holding onto their passion through hard times. Things will get better, they are already starting to.