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Goodbye...For Now

It's been 216 days. There have been 86 posts.

3 stays in the hospital
2 jobs
16 days of insomnia
40 recipes
1 prize winning chili
7 days of tofu appreciation
and 1 glorious diagnosis.

It has been quite a trip and I'm so glad that you've all come along for the ride. I feel so blessed to have had this community of people who supported me, laughed with me and were willing to try all my crazy recipes. You even put up with my complaining and the meandering thoughts on faith. You guys are good.

But today it has to come to an end. This blog was a way for me to get through a really tough time in my life, thankfully, that time is over. Sure, there is a learning curve with being gluten free for life, and of course there are more recipes to discover. But there are blogs far superior to mine that cover those topics.

Now don't get too worked up, I'm not turning my back on the blogosphere (or whatever it's called) forever. There are big plans in the works. Plans that have been rattling around in my head since March! There is something new on the horizon and I hope you will be part of it. I can't say much now, but I can promise that things will get interesting on August 25.

So take a break and read some other blogs (I recommend the ones to your left) but don't take me off your Google Reader just yet; the next step in the adventure starts in 25 days...

Dumped

Today was just one of those days, a little down in the dumps. Nothing seemed to be going quite right. I woke up late. When I took the dogs out I found that someone (hooligans or ner-do-wells I presume) had dumped out the flower pots planted on my back deck and taken the plastic planters! At work nothing seemed to line up, ending with me getting frustrated by a project that, I fear, will never end. My plan was to leave at 5pm, but then I had one of the strangest conversations I've ever had and ended up leaving at 7:40pm. When I got home I took the dogs out, sat down for dinner and all the power went out. After rooting around in the basement I was able to get the juice back with only a few encounters with man-eating spiders.

So what do you do when life isn't so sweet? You make brownies.
These are gratefully borrowed from glutenfreegirl and are fudgy delicious!

8 tablespoons unsalted butter
4 ounces bittersweet chocolate (or as dark as you can stand it)
1 cup sugar
2 eggs
1 teaspoon vanilla extract
1/4 teaspoon salt
1/4 cup brown rice flour (or sorghum)
1/4 cup tapioca flour

Preparing
Preheat the oven to 400 degrees F. Grease an 8-inch square baking pan. Chop the chocolate into small slivers. Slice the butter into one-inch pieces. Combine the two flours together.

Melting the chocolate
Bring a saucepan of water to a boil, and then turn it down to a simmer. Place a large metal bowl over the top of the saucepan. Put the chocolate and butter into the metal bowl and stir, occasionally, as they both begin to melt. As they come to a full melt, stir and stir, vigorously, until you have a cohesive mixture.

Making the brownies
In a medium-sized bowl, combine the sugar and eggs, whisking vigorously until they are creamed together, with a silky consistency. Add the vanilla extract and salt and stir well. Add in the gluten-free flours and stir. Finally, pour in the melted chocolate-butter mixture and stir, carefully, with a rubber spatula, until the mixture has become smooth.

Baking the brownies
Pour the mixture into the prepared baking pan. Smooth the top with the spatula. Slide the baking pan into the oven and set the timer for 25 minutes.

Finishing the brownies
As the brownies are baking, fill the sink with ice cubes and 1 inch of water. When the brownies are finished baking, remove the pan from the oven and place it immediately into the ice-water bath. (Don't let any water splash up onto the brownies!) Let the brownies stay there until they have cooled completely.

These brownies taste best the next day, after an entire night of refrigeration. That makes the top crunchy, the insides decadently chewy. However, I'm sure no one would suffer if you ate the brownies immediately, either.

Is There a Doctor In the House?

So apparently I didn't need all those doctor's and tests, I could have just been diagnosed by my friends! Remember when I asked you all to tell me what you thought was wrong with me? Well surprise, surprise, one of you hit it right on the nose!

Congratulations Joline, you are like my own, personal Web MD! You got in the gluten and even the dairy, pretty impressive. I'm considering getting rid of my health insurance and just listing Blogger as my primary care physician. It's gotta be just as good as an HMO, right?

So what fabulous prize does Joline win for her auto-immuno-expertise? Well, I'm glad you asked. It's the super cool coffee mug at the top of this blog. Thankfully Joline loves coffee, eating, sleeping and blogging!

With celiac, everyone's a winner!

Holy Ground

Take off your sandals, for the place where you are standing is holy ground...Exodus 3:5

I know that I said I was going to leave the past month behind me and just move forward on this blog. But, as is so often the case, I was wrong.

Today was a special day. At 2:25 p.m. I went to Facebook and pulled up a photo album. I listened to a playlist of songs that I created three months ago. I prayed and I cried. I was surrounded by things that seemed so ordinary and mundane, but for 45 minutes my hectic, cluttered office was holy ground.

One month ago, today, my friends Jeff and Amy gave birth to a beautiful little girl named Leah. Leah's birth was unique in that we knew that she would not live for very long, if she lived at all.

When Jeff and Amy told the world that they were expecting, I was thrilled. I knew what fantastic parents they would be. Then, in May we found out that Leah was sick. There were appointments and specialists, but no one could give us the words we were begging to hear. She was not going to survive the pregnancy and probably would not survive the delivery. I cannot explain what the next month was like. My heart was broken, I was powerless to help my friends.

A little over a month after finding out that they may never get to know their sweet little one on this earth, it was time for Jeff and Amy to deliver. I had the honor of being with them at the hospital on the day that Leah was born and I had the privilege of meeting little Leah while she was still alive. It was painful and scary and wonderful and sacred. I still haven't found the words to express what I experienced that day. I continue to be blind-sided by grief on a daily basis, never knowing what little thing might remind me of her. But I would not trade one second of my sadness or a single tear that I have shed. As strange as it may sound, watching Leah live her short but precious life has had a profound effect on my faith.

So today I sat at my desk; the desk where I first found out that Jeff and Amy were expecting. The desk where I bought the first baby gift and where I received the phone call that Leah was sick. I sat in the chair that I used the day after Leah was born, when I was working in a haze, trying to understand what had happened. The same chair that I sat in while creating the programs for her funeral and writing a eulogy for a little girl I had only just met.

I closed my eyes, listened to the music and prayed. I thanked God for giving my friends the chance to be parents and for allowing me to be a part of her life. I prayed for healing and wisdom and joy. I asked for the protection of children who will come in the future and I asked for peace for those who are grieving the loss of their little ones. I confessed that I'm still angry at God; that I'm grateful and furious all at the same time. I sang the song that served as my prayer for the month before Leah was born; when the words wouldn't come and my heart was in a million pieces. I cried and I remembered a beautiful little girl, who would have been one month old today.

All I Can Say-David Crowder Band
Lord I'm tired
So tired from walking
And Lord I'm so alone
And Lord the dark
Is creeping in
Creeping up
To swallow me
I think I'll stop
Rest here a while

And this is all that I can say right now
And this is all that I can give
And this is all that I can say right now
And this is all that I can give, that's my everything

Lord didn't You see me cry'n?
And didn't You hear me call Your name?
Wasn't it You I gave my heart to?
I wish You'd remember
Where you sat it down

And this is all that I can say right now, i know it's not much.
But this is all that I can give, yeah that's my everything.
This is all that I can say right now, I know it's not much.
But this is all that I can give, yeah that's my everything.

I didn't notice You were standing here
I didn't know that
That was You holding me
I didn't notice You were cry'n too
I didn't know that
That was You washing my feet

And this is all
This is all that I can say right now, oh i know its not much.
But this is all that I can give, yeah that's my everything.
This is all that I can say right now [right now], i know it's not much.
But this is all that I can give, yeah that's my everything.
This is all that I can say right now, oh i know it's not much.
But this is all that I can give, yeah that's my everything..
yeah that's my everything..
yeah that's my everything..
everything...

Jeff and Amy have started a blog to share the story of Leah's life and to serve as a resource for other families who are facing the loss of a child. Read it to hear the story of a faithful family, a precious little girl and a God who is good all the time.

Say What?

Casein Intolerant Celiac Disease with Dermatitis Herpetiformis. Ah, it rolls off the tongue. If you sing it to the tune of Supercalifragilisticexpialidocious it's almost catchy. So this craziness is my official diagnosis. These seven words are the cause of a whole lot of pain and suffering. So let's take a minute and break it down.

1. The most important part of the diagnosis is Celiac Disease. Celiac is a lifelong autoimmune intestinal disorder, found in individuals who are genetically susceptible. So when my body takes in gluten it has a toxic reaction and begins to attack the mucosal lining of my intestines. Hey, I didn't say that this was going to be pretty. The damage to the lining makes it impossible for my body to properly absorb nutrients leading to all sorts of health problems. Most often celiac presents with digestive issues, but I presented with more joint/bone and neurological issues, which is part of why my diagnosis was tricky.

What this DOES mean: I can never eat gluten again. Each time I take gluten into my system, no matter how large or small the amount, my body will release toxins that will destroy my intestines. The more damage to my intestines, the sicker I will become. The good news is that by eliminating gluten, my intestines will begin to heal themselves so I will begin to feel better and better.

What this DOES NOT mean: I will suffer from my symptoms for the rest of my life. I will be put on medication. Once my intestines are healed, I am healed. That all of my blood relatives have celiac disease.

As I said above, I will always have this disease. But by following a strict, gluten free diet my body will eventually be able to return to normal function. And while celiac is genetic, people can carry the genetic markers and never develop the disease. It often lies dormant within your system and, for those who are susceptible, becomes active after some kind of physical or emotional trauma or prolonged illness. There is about a 10% chance that my family would have the genetic markers and there is no guarantee that the markers would develop into the disease. So my family should keep an eye out for symptoms, but there is no need to freak out about it (Mom).

2. Casein Intolerant. Casein is one of the proteins found in milk (lactose is the sugar found in milk). Casein's structure is very similar to gluten's (which is the protein found in wheat). My intestines are in bad shape, so they can't seem to be able to tell the difference at this point. My doctor feels that once my intestines are healed I will probably be able to have casein again without any issues. It can take anywhere from months to years for the lining to heal, so I need to avoid cow's milk products for now, but hopefully can re-introduce them down the road.

3. Dermatitis Herpetiformis. This is a skin condition that effects some people with celiac. Remember the first thing I noticed after being on the elimination diet? Yeah, that's right, it has a name. Staying gluten free and making sure that I use gluten free skin products should keep it at bay.

All in all, I have to say that I feel happy about my diagnosis. It is strange to think that this is for life. But it feels so good to have an actual name to my illness, to know that I'm not crazy. I feel hopeful that my health can only improve and that I don't have to fill my body with more pharmaceuticals. After being reminded of how bad I had been feeling, I'm so grateful that I can get a new start with no place to go but up.

When Gluten Attacks...

It started out so well. Enjoying the sweet, malty goodness of the beer. Biting down on the warm, crispy-gooey comfort of a toasty sandwich. Three different desserts, each involving some sort of just-beginning-to-melt ice cream. This is the stuff dreams are made of! Last night was a fantastic time full of gluten, but more importantly, celebrating with the folks who have helped support my crazy lifestyle over the past 7 months. I began the night feeling nervous about what would happen, but went home feeling so grateful for the amazing, generous friends (and family, thanks for biking down Matt!) I have.

Unfortunately, that feeling didn't last for long...

As I drove home I started to feel the slightest bit of weirdness in the pit of my stomach. When I got to my block, my head was throbbing so badly I could barely park. I sat down to do the blog post (for those of you who couldn't join me) and my fingers and arms started to cramp. I didn't want to admit it at that point. "I'm probably just tired," I told myself. But it soon became clear that it was more than just sleep deprivation.

I woke up around 3 am with that horrible feeling that I was falling, only to discover that I WAS falling. My muscles had seized and I was rolling out of my bed. Since I couldn't move my arms or legs I hit the ground hard. After this happened for the second time I just slept on the floor. I won't go into all the details, but I woke up in a fog. My muscles ached and my joints didn't seem to work.

So I spent today getting some final tests done at the hospital. Obviously I have some sort of gluten intolerance, but now we have to try to figure out why and where it came from. So I was poked, prodded and biopsied, hopefully for the last time. If all goes according to plan I will have a diagnosis on Monday. So until then I'm taking my bruised and battered self to the bathtub for a date with some Epsom salts and a big glass of ice water.

Who knew a sandwich could cause so much trouble?