Monday

Mondays are hard for me. I think it might be because Sundays are so long...and it takes a lot of effort to get up, get ready, and be at church on time. Not to mention that being there, actively involved takes a lot of energy. I enjoy my Sundays, but they take a lot out of me.

I'm just going to write a little here about how I feel and some of the struggles and events that occur concerning my health. This is not a pity-me party or a bid for sympathy. I've just been asked a lot recently what is wrong with me--you know, what are my health problems. How do you put 3 years of hospitals, tests, doctors, surgeries and failed treatment attempts into a sentence or two?

I have Myasthenia Gravis (MG), we think. I have seen over 15 neurologists, and this is our best guess. We think it is some rare form of MG, in association with something else not-yet-diagnosed. I have a few of the classic MG symptoms, but not all. And some very MG-specific symptoms don't present with me. And some of the medicines for it are helping a little, but not much. So, no one knows.

What do we know?

It is auto-immune.

Without high-powered steroids and immuno-suppresants, I am completely bed-bound, too weak to even lift a finger without help. (We know this because during one of my stubborn streaks, I quit taking the medicine and had to spend 12 weeks in bed with a full-time nurse at my side).

Even with the meds, my activity is extremely limited and my strength is almost non-existent and is used up quickly. Example, on Saturday evening, I was cutting my fingernails and I struggled to be able to squeeze the fingernail clippers.

There is a breakdown in communication between the nerves and the muscles. Over the last 2 1/2 years, this has led to a severe muscle atrophy (due to periods of forced inactivity). I am unable to exercise to rebuild muscle, because the muscles don't work well, and when they do work, using them repeatedly is more detrimental than helpful. For example, I had a long day at church yesterday, but instead of that helping to build stamina and muscle, I have been virtually unable to move today. Any time I push myself, I pay severely for it.

That is what we know. We don't know how to help. We don't really even know what's wrong. I have seen doctors all over the US, and even been to Mexico to try treatments that are illegal in the States. Nothing helps. I have tried spiritual healings and blessings. I have tried dietary changes and supplements. I have tried holistic medicine--that almost killed me.

We are working on getting an appointment to see someone at the Mayo Clinic. It is the only option left to me, at least that I see at this point. As I type this, I'm sitting in my chair with my head resting back on my chair, because I don't have the strength to hold it up. I have to psych myself up to try to muster the strength to get up and move into the bedroom. This is typical for me in the evenings.

And yet, I truck on. What choice to I have, really? Just one step at a time.