The story

I took a little time today to chat with a friend and I gave a brief synopsis of what all has happened to my health over the last 2.5 years. It was good to remember a bit about where I've been vs. where I am today.

It was 3 years ago this month that I got my first full-time (40+ hr/wk) job. This means that I have just graduated from BYU and road-tripped back home. I am living my myself for the first time EVER and I love it! I just found out that I am going to be sent to Atlanta for 2 weeks for training for work, where I will get my own hotel suite in a nice hotel, and I'm feeling pretty special.

Fast forward 5 months. I'm loving work. I have a boyfriend who loves the outdoors as much as I do, I'm making money...life is good. It's the 4th of July week of 2009 and I'm down in Destin, FL spending the week sailing and hanging out with Danny's family. This is the first time that I noticed that I was kind of tired--more so than usual, even for playing outside in the heat. So I think, maybe I'm a little dehydrated. I bought some Gatorade and slept a little more.

2 weeks later, I'm at work and I'm struggling. I'm beginning to think I'm sick. I'm sleeping about 12 hrs/day (every minute I'm not at work) and my eyes are having difficulty keeping my computer screen in focus, not to mention that my mouth is so dry ALL THE TIME that I feel like I've been sucking on cotton balls (I had to keep water at my desk, so I could swallow some before I had to speak to anyone).

I make what is to become my first of MANY doctors visits. I walk into a facility, and the doctor there runs labs and tests, but has no idea. So, I go home to wait for the results of the bloodwork. All clear. Little did I know, this was the first time of many that I would hear this statement and baffle my doctor.

To be continued...

Today

I've been having plasmapheresis treatments since June--to help keep symptoms under control. We started them in preparation for the thymectomy that I had in July 2011. We've been continuing with the plasmapheresis as needed since then. We kept hoping that each round would be the last one needed...but that doesn't seem to be happening.

For the first two rounds, we had to travel to Atlanta...which was a big deal since each round takes 10 days and we had to come up with hotels and food for those days, not to mention the gas to get there and back. Then, finally, we found a dialysis place that would do it here--so much less trouble. However, each round requires the surgical placement of a central line, then I have to keep the line in my neck for the course of the treatment, which is both painful and inconvenient. The treatment itself is painless, but it leaves me feeling drained. The whole process is extremely inconvenient.

The benefit is simply about 3 weeks of functionality. That's it. All this trouble for 3 decent weeks. The process of plasmapheresis is simple in concept: pull blood out of the body, separate the plasma from the red blood cells, discard the plasma and replace it with artificial plasma (albumin), return the blood. This process gets rid of the antibodies that my body is creating that is causing a disruption between the nerves and muscles. So, I get temporary relief, but only until my body can create more nasty little antibodies.

We've been doing this as a means of being able to function. The medicines I'm taking, without the plasmapheresis, just keep me alive; I can barely move when I'm on them alone. The plasmapheresis helps enough that I am able to move a little. But I can't do it forever. It's rough on the large veins in the body. And all doctors that I've seen are out of ideas. I've been to over 30 different physicians over the last 2.5 years.

Today, I got an appointment at the Mayo Clinic in Rochester. I feel like it's my last option. If I go up there, and they can't come up with a plan to fix me, then I don't know what else to do. And I can't NOT go just based on the premise of being scared they won't find anything... So, here we go. Let's see what they can do.

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.