Monday, October 19, 2009

RCE - another piece of the puzzle

Back in July, I wrote about how I figured out that I sometimes sleep with my eyes open. I have since taken to sleeping with a sleep mask (the satin fabric kind that you get in a drugstore). I put a thin smear of vaseline on the mask where it will be on my eyelids, and gently press it onto my closed eyes. This has worked very well in keeping my eyes closed and I have had little discomfort since I started doing this.

Today, though, another piece of the puzzle clicked into place. When I found out that my corneas were peeling off, I knew there must be some reason for it. All the doctors told me that it had to do with my eyes being dry and that sometimes people have damaged corneas. I was convinced that there was more to my condition, though. At first, I thought it may have to do with a drug that I took during high school to control acne. Then I thought that I might have cancer. (OK, that was a parnoid thought, but the eyes are the windows to the rest of your body.) I don't think either of these things had anything to do with my RCE. I think it goes back to my gall bladder.

In 2003, Sam was born in June, and I had my gall bladder removed in October. Before my surgery, I was eating very little and I lost quite a bit of weight. Basically, I stopeed eating dinner for two months. I knew if I went to bed hungry, I wouldn't wake up with the awful gall bladder attack pain. It took me several months after the surgery to get back to a normal diet. But my body was not the same, and I couldn't eat some kinds of food anymore. Sadly, I didn't make the connection between certain foods and how my body felt after eating them for over two years. (I blame the Mom Thing - I was so consumed with taking care of two young kids that I wasn't overly concerned with my occasional digestive issues.)

However, over this past year I have been making changes to my diet. I have stopped eating almost all pork. I never eat hot dogs or bacon. If we have ribs (previously one of my favorite things), I only eat one and make sure I have extra vegetables. This summer, I tried going without red meat. I didn't miss it too much, and I even considered becoming a vegetarian exclusively. Except for one big thing. I love hamburgers. I know me. I don't know if I could go through the rest of my life without a hamburger. But, feeling good is better than a hamburger, so for the past few months I've been having gardenburgers.

This weekend, though, I fell off the wagon. I ate a western bacon cheeseburger. The aftermath has been, um, significant. I can't ignore the fact that this kind of food makes my body sick. And this morning, when I woke up with a really dry eye and I still was having diarrhea (OK, more info than you wanted, but if this helps even one person with RCE, then the honesty was worth it), it hit me: I was dehydrated. I have probably been dehydrated since 2004. I was so dehydrated that my corneas became dry and damaged.

It wasn't random. There was a reason. I was dehydrated and I was sleeping with my eyes open.

I feel like a weight has been lifted. I can't tell you how much RCE messes with your head. The randomness of the episodes and feeling so out of control of yourself is horrible. I was having small panic attacks at various times of the day. Even now, almost two years later, I have a small panic if the store is out of the ointment that I use, and when I find the ointment I almost weep with relief. It's sad - I know that it's totally irrational, but I can't help it, so I let myself feel it. I tell myself that it will be ok, but I still know that it might not. Anyway, now I have another thing that I can do to protect my eyes. I can make sure that I am hydrated. I can avoid foods that my body can't process. It's a small thing, but inside my head it's like turning a corner; it's like the day after a week of cold rain. It's sunshine.

(PS - If you are reading this because you or someone you know is dealing with RCE, please leave me a comment or email me. I'd love to talk to you.)


Lisa P said...

Well, I've never heard of RCE before your journey, but I know the trip because we traveled it with food allergies with Aris two years ago. It's such a relief to figure out that there IS something you can do. So happy for you! So sad for your cheeseburgers. Heaven has them, I hear.

Sheila said...

Lisa, Sally and I decided that Heaven will have the best most wonderful bacon and we will have a Bacon Day and eat everything with bacon! Including cheeseburgers :)

cko said...

So great that your diet has changed. Eating organic is more and more evident to be the healthiest. One never can eat enough veggies and fruit and some are considered "perfect" foods!