About Us

Wormy and I were introduced in Argentina while I was serving a religious mission. At the time, several other American missionaries serving in the same area got sick with similar symptoms. Unfortunately for me, as far as I know all of those missionaries have gotten better. Most through miraculous blessings. So now it's just me, and no one has left me even a hint as to what it is we got.

Most of you who know me are probably thinking- wait, you still have that? The truth is, I don't talk about being sick much. And if people ask about it, I'll downplay this as much as possible. If you think this is weird, just imagine explaining the most personal, heart wrenching trial you've ever been through. You're probably not too inclined to share all the details either.

I also hold to the fact that, while I am sick, the sickness is not me. So I got sick a while ago. I'm still the same person. I like the same things. If someone had chopped off my leg in Argentina I wouldn't call you each month just to re-inform you that yes, my leg is still gone. We wouldn't sit around and talk about my missing leg four years after the fact. Instead we'd probably just do the things that we like to do together because I'd still be me. Even without a leg. My Argentine disease isn't much different. I'd still rather talk about the things I'm interested in and do things I like doing. And trust me- just like if I woke up to see that my leg had grown back- if we ever find a cure for this I'll be sure to be yelling it from the rooftops. You won't need to rely on any rumors of that one.

When I talk about being sick people typically ask me the same questions, so I'm just going to go ahead and answer them here. I'll answer the questions with the most commonly asked first.

But I thought you got better?
I know you did. Someone out there had a whole lot of fun spreading the news that I was cured. And those of you who didn't hear that thought that since I stopped talking about it, it just went away. It never was true though... There was a point a few years ago when I went from being terrible to slightly less terrible. I think that's where the 'cured' rumor stemmed from. And the fact is, I've almost always been able to do a few hours of activity a day so you probably saw me during those hours and assumed things were fine. It's ok, you're only human. And to be honest, you should count your lucky stars that you've never been sick enough to understand the ins and outs of being chronically ill.

But you don't LOOK sick.
Sigh. I know, I know. First of all, can I just say that you should NEVER say this to people! It's actually a very emotional situation for most of us who are chronically ill. It's weird to think that there's a stage of illnesses between a fatal case of cancer and being perfectly healthy. But it turns out sick people aren't always in hospital beds and handicapped people don't always ride in a wheelchair. There's a whole network of people out there who are suffering from what we like to refer to as our 'Invisible Illness'. They are illnesses that are chronic and life changing, but that don't show themselves on the surface. Diabetes, Fibromyalgia, Chronic Fatigue, severe migraines, and arthritis are just a few. Most people who suffer from these illnesses don't LOOK sick. In fact, many of them are able to hold jobs, raise children and lead what might look like a very normal life. But it only looks normal because you're not around to see the hours of pain they suffer every day as a result of their 'normal' outings.

Well, is it____________?
Please never ask me this to my face. Let's think about this one. If I tell you about my illness that I've been researching for four years and has left me legally physically handicapped and then 30 seconds later you think of a time in your life when you were a little more tired than normal- do you really think that what you had is the same thing I have? No. No, I'm not anemic. No, I'm not diabetic. No, going on a gluten free diet doesn't help. If you've really thought about things and think you might have something that might help then that's great. But if you're not even going to take a second to process what I'm saying then ,frankly, your conclusions are more offensive than helpful.

But there have been times when you've felt better, right?
Yes and no. I mean, there are definitely days when I feel better than others. But usually when people ask me this, that's not what they're talking about. They think that for long periods of time my symptoms completely went away and then came back. It's a common case of healthy people/sick people communication errors. Even on my very best of best days, if I over do it the day can become a really bad day. (over doing on a good day would consist of running errands for over an hour, cleaning the bathroom AND kitchen in the same day etc) So you see, even on a really good day I don't function like a healthy person for long. So if someone calls one day and I tell them I'm really sick and then a few days later they call again and I tell them it's a good day- it would be easy for them to think that I got feeling totally healthy when really I'm just at a manageable stage of sick.

What exactly are your symptoms?
Mostly muscle weakness. It's a lot like that weak feeling you get when you have the flu and can't sit up for too long without getting exhausted. More symptoms come when I overdo it. I'll go over those in detail in a more medical section.

What tests have you had done?
Sooooo many. I have a binder full of them that you can look at if you like.

How can I help?
I'm always really grateful when people want to help. To be honest, the things that you typically think of when you help a sick person (making meals, bringing flowers etc) are of course appreciated (especially during my super sick times) but not always necessary. Lucky for me, Doug's a good cook. And he's fine with walking on a gross kitchen floor when I'm too sick to mop. What helps the most is the slow and steady stuff. A call every few weeks. A one line email here and there. Quite frankly, if you can just manage to remember that I'm sick you'll be doing a world more good than most people.