(I have a Dream ...please go read when you're done reading my post)
When I started this blog over 3 years ago, I mentioned that I had Myasthenia Gravis. It is not a common disease and I got a few emails asking me about it. I continue to get hits, on a weekly, if not daily basis looking for information about MG, and one of the many drugs that I take to treat this ..what shall I call it ..it's more than a disease .... monster?
I posted some on it, some of the medical, and a little on the impact of how it effected me. Reading over it, I can really tell how I was trying to not pay much attention to it's true effect on ME as I wrote.
It is odd, that at that point, I was just coming to terms with how my eating disorder was effecting my other health conditions, and here I am, three years later in the exact same spot. I have come to the realization, maybe because I've passed far enough past the age of 40 to know, maybe because I've actually *heard* the doctor's, that yes, Myasthenia *could* theoretically be fatal for any patient who has it. Even though it is not likely to be. Even though there are treatments that dramatically lessen the chances ... I've known, personally, 3 myasthenics in the last year who have passed away. Then there is my friend Deb, her boyfriends mother passed away because of complications from MG this summer. My therapists mother and aunt (twins) passed away because of MG (her mother, just a year and a half ago) and 3 myasthenics that I *knew* though the internet.
None of them passed away directly because of MG ... but they all passed away because they HAD MG.
I think, this realization is starting to sink in as I realize the gravity of having an eating disorder with a muscle disease. I don't eat, or eat very little, so my body decides to digest itself ...on what? Muscle tissue. Do I *HAVE* any muscle tissue to spare? What will happen when I get sick and need that muscle tissue? What happens if I am in an accident and my immune system goes haywire, sending me into a myasthenic crisis? What happens ... when whatever happens to cause myasthenics bodies to go into myasthenic madness happens ...and my body has digested itself to survive my own refusal to nourish itself? What resources will be left for my body to survive? Will plasmapherisis or IVIG be enough to pull me out? Will even my trusted Dr. M (my neurologist of 16 years) be a good enough neurologist to pull me out of a self induced muscle degenerated state?
Eating disorders are notorious for not showing up in lab work. Girls and women who have been with holding nutrition for long periods of time manage to have perfectly clean lab work. They can have good labs that show absolutely no problems ...right up to the medical examiners table. When a patient with an eating disorder starts to show malnutrition, doctors start to become alarmed ...because it really means there is very little nutrition making it past the teeth and tongue of the patient.
I've managed to have two in a row of such labs. Low protien, low albumin, my electrolytes of another type that should be low was too high ... and my cholesterol levels were really out of whack. My HDL high, but my triglycerides not. Those are all things that show an eating disoder specialist that a patient ...is surviving on their own body tissue. I have lost track of the number of times in the last 2 months that a doctor has told me "you're starving"
The term malnutrition and starving are starting to ring in my ears more than
ever ever did ... it's as if those diseases have never existed in my body ...except for the doctor's to remind me, with those illnesses present ... I cannot survive long at the rate I'm going.
I've had this eating disorder since I was 14. I seriously did not think it capable of taking my life. If it could have, it would have.
If I was subject to it's grasp of death ..then I would not have survived more than 2/3 my life with it, now would I?
I'm certainly not the healthiest speciman on earth, so I must be stronger than the ED.
Until this fall ..and I've realized ...the ED has had me in some kind of box, blinding me to the realities of what it's doing to me. The insulin resistance that my endocrinologist was so very impressed with my ability to 'control' ... now that I'm eating a bit ... has skyrocketed back up, and my blood sugars ...well, let's just say ... my pancreas is a bit tired of the game of 'we don't know when she's going to let us eat or not'.
Now that I'm feeding my body, the pancreas doesn't quite know how to respond, and the blood sugars, while not QUITE high enough to get me a diabetes diagnosis ... I'm within a couple of points.
So, I get it. It's time to turn it around ...and really recover this time. Not because I'm afraid of becoming diabetic (which, was what sent me into normal eating a few years ago) because, I may have already accomplished that one.
But because, quite simply, one day, my body is going to say "Enough"
and give up.
My doctor's are right ... I am not stronger than this eating disorder. I might be able to beat it ...emotionally, spiritually ... behaviorally ... but physically?
It's stronger than me ...if I don't rid myself of it ... it will kill me.