Being Mindful

Hey...I'm Rachel...nice to meet ya! Oh? We've met before...OH YES!! I'M SORRRRRY, please forgive me. We have met! My mind..it leaves me sometimes..but not today.
Why today is my mind with me? I suppose its because I'm being mindful. Full of mind? Full of my mind? Not likely...hehe...ok, this is my own weak humor.

Today is a special day for me, as it marks 6 months since I last required Plasmapheresis. If you've been reading with me for a bit, you know what I'm talking about. If you're new to this reality check, let me give you the short version:

In 2008, I began to show symptoms for a neuromuscular disorder known as Myasthenia Gravis (MG). This disease can render your muscles weak and sometimes useless. Typically MG impacts those muscles in your bulbar region. This means diaphragm and up. "Head, shoulders, sometimes knees, sometimes toes". Each person with MG has a different experience. Mine resulted in several hospital stays, many variations of medications, meeting doctors and nurses all over the state of Texas (dont mess with Texas!), and reaching a point where being able to breath on my own, was a chore.

I consider MG to be a ninja disease. By this I mean you have NO idea its there, and then *BAM* you're sucking wind, having a hard time walking, arms can't wash your hair, your eyes can't maintain a straight gaze, your diaphram cant expand, your jaw can't chew and your throat sure as heck wont manage that large piece of steak you just cut. You went from being super active to having a feeding tube jammed down your nose (NOT fun!) and fall warning socks slipped onto your feet.

What causes MG? No one knows, but when this autoimmune disease develops, signals from your brain, can not reach your muscles. The signal is blocked! For the science nerds, the signal is blocked by antibodies at the neuromuscular juncture, preventing acetylcholine recptors on the postsynaptic gap side of the river. That said, sometimes the problem lies with the cattle herding dogs, on the postsynapitc side of the equation, in that the antibodies are preventing the MuSK protien from hearding the other little protiens to their pens. (pretty sure I just failed my science test)

Bored yet? SO - MG, Ninja disease, doesn't play nice, doesn't really go away, medicine can help, OR ...if you're stubborn like me... medicine does not always help, but modern science, willing Doctors, and prayer warriors do!

Back to my 6 month mark. Since this journey began in 2008, my body has required the blood be cleaned up weekly, sometimes every other day. I would sit next to a large machine that would basically wash my blood. Plasmapheresis involves the blood flowing into a large spinning machine that separates your red blood cells from the plasma. Plasma goes to the trash because the antibodies live here! Red blood cells are paired up with a plasma replacement, and returned to your body. All of this took place through a permacath (tubes) installed in my chest wall. Super sexy. Not.

Today, it has offically been SIX WHOLE MONTHS since I've required a plasmapheresis treatment! Why? Doctors who my husband Lee and I have come to know and trust, were willing to try something different with me. We tried an infusion therapy that is new for MG. It works!! God sent angles our way, for sure!

The MG isn't gone, its just taking a nap. I'm ok with this! Right now, I'm back to my healthy weight, have lost the bloat associated from a year of Prednisone, and am slowly reminding my muscles and joints what it means to exercise.

If you've read this far, you ARE a champ. Thanks for hanging with me. The month of June is considered Myashtenia Gravis Awareness Month. I do hope that in reading this, you're now more aware that this disease exisist.

Be blessed!