When you have the Cooties

It seems my body is revolting against living. I am not sure if it is revolting against me, or maybe it is just against living in general.  Maybe it would be happier in that voluptuous blond we saw the other day or perhaps it would prefer to be a man and not a woman. Either way, it hates me.

For as long as I can remember, I have been fighting with myself in an effort to not be in pain.  I have worn glasses since I was four and easily can tell you I can remember being in pain then. Some days it felt as if someone was trying to shred my bones from the inside. I would take pain relievers, but they rarely worked and who rally wants to suffer from liver damage or stomach issues because they took too much?

Unfortunately, I am not the only one who's body is having a Civil War. My mom also has been seeking a diagnosis for as long as I can remember,  Parts of her have already won little battles here and there; her uterus, her intestines...all removed because they couldn't stand her. My youngest daughter also appears to have similar symptoms.

Recently, she chose to have a full genetic analysis run.  Her diagnosis: Myotonia Congenita.  So I chose to have the same test.  My diagnosis: Myotonia Congenita.  My daughter had the test run.  Her diagnosis: Myotonia Congenita.

Myotonia Congentia is a hereditary disease which affects the muscles.  It causes the muscles to spasm and when activity is induced, they don't always relax.  But...as all the doctors kept telling us, "Myontonia doesn't cause pain."

In an effort to figure out what is causing the pain, mom and I have become lab rats, pin cushions and experts as navigating parking garages and the Medical Center. Not only do the insurance companies charge you an arm and a leg, but the parking garages are in on it too!  I have become quite convinced the doctors are in on the who charade, since they can't seem to keep appointment times.

You arrive 15 mins before your appointment.  Wait until a half hour after your appointment to be shown into a room.  Wait another 45 mins for the doctor to show up. Doctor walks in and leaves 5 minutes later.  You wait 15 minutes for doctor to return with all your orders and prescriptions. By the time you make it out the door, you have easily passed the 1 hour parking rate and and now into the 3 hour parking rate. $10 later you are finally able to escape!

Trouble is you have orders to see another doctor all so you can waste more time and money!

Our last visit was to see a neuro-muscular specialist.  Quite frankly, the only thing he had specialized in was the ability to be duplicitous. He decided I needed to have another EMG so HE could decide if I really had myotonia congenita.  My reward for submitting to yet another pin cushion test...a nice bruise. "Oh, did I hurt you?"  This was the doctor's response.  You can only imagine my irritation.  The next visit, I wore my "Infidel" shirt to let him know what I thought of him.

He did, submit mom and I to an ANST test.  Basically, it is a test which gauges your autonomic nervous system which controls blood pressure, sweating, and other things. They put all these sensors on you and stimulate the nerves with some protein water.  Then they do breathing exercises in an attempt to cause you to freak out and fail the test.  At the end, after laying flat for 45 minutes of these tests, they rapidly tilt the table to an upright position of about 70 degrees in an attempt to get you to pass out!

What is wrong with me?!?! I allowed them to do all these things to me!

In the end, I passed. Apparently, with flying colors (and I found out I am not a Time Lord). The evil doctor told me he didn't think our issue was myotonia.  He is more inclined to believe we suffer from an even worse condition called Ehlers-Danlos Syndrome (EDS) .

EDS is an inherited disorder which affects connective tissue. And it causes pain.  Lots of it.  Lately, I have had a flair up.  I have been pretty uncomfortable and yet, I have persisted and pressed on, knowing it will go away and tomorrow may be a better day with less pain, less discomfort and the ability to do the things that make me happy; like jumping out of a plane, riding a roller coaster, tubing down the river, or just going to the gym.

There are about five different types of EDS. Some aren't as bad as others.  Some are pretty nasty.  I look at my symptoms and I think I am pretty lucky considering some of the symptoms other people have.

Now to play the hunt down the right doctor game!