June is Myasthenia Gravis (MG) awareness month, as so deemed by the Myasthenia Gravis Foundation of America. I'm glad they did! I AM aware that my body has this facinating neuromuscular disorder/disease, and having a designated month reminds me to reflect.
Yeah, this condition can be a real drag...literally. At the same time, it has really been a blessing in my life. Of course, there are times I either forget that MG is with me, or consider what life would have been like without MG. Neither scenario makes me happy.
I do not enjoy the times when I forget that MG is part of my life. Why? Small fear I suppose. When you forget there is an enemy, thats when it sneaks up on you. This applies to so much in life. Neither do I care to do the day dream thing, "What would it be like if I didn' start to slur or begin to see double?" because that just leads to the silly question, "What did I do to bring this on myself?" ...and like I said, that's just silly 'cuz I didn't do anything.
What I DO enjoy doing is taking a moment to think about the oh so many people we've met, because my body has been graced with MG: doctors, nurses, patients, true friends, new friends, prayerful friends, etc. We've shared in others' stories, we've learned a great deal about the human body, we've learned a lot about insurance and medical bills, we've gained perspective, and we've grown stronger in our faith. I can say 'we' because this adventure with MG, quickly solidified our journey together.
Thank goodness June is MG awareness month, because it gives me good reason to reflect, and to share with you, my journey with this rare condition, which is unknown to many.
Can you say My-uh-sten-knee-uh Graah-vis? Great! You ARE aware too.
Sunday, June 24, 2012
Thursday, June 14, 2012
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!
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!
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