Heh. You all wonder where I might have been hiding myself lately…the ones who notice anyways. Things are…things are basically shit on a shingle, as my dad used to say.

AS IF I didn’t have enough of a party with my little adventures in the hospital, I now have something even more precious and delicious to worry about.

And before I reveal this, I wanted to write this the other day: you fools who have never had to deal with the actual manifestations of marfan syndrome beyond what your negative imagination has allowed you to believe really need to cut the shit and get on with things. Life is a short and precious thing. There is no rhyme and reason behind who is afforded what gifts over another, as I have come into contact with some pretty vile and despicable creatures who might try dealing with a devastating disease to actually even just appear to be a real and deserving human being. I found this apathy when I was actually looking for people who were group leaders in charge of support groups who had dealt with the effects of going through any of this. Most had no experience going through any of it because they had not had a thing happen to them or anyone in their families.

Anyways, yeah I’m a little bitter, eh?

Today Anne took me to the otolaryngologist’s office to check on my fancy pants hoarse voice causing vocal chords.  And because I am just so lucky, we were told both my vocal chords were out (paralyzed), and that they were limited in what they could do. They could surgically pull them back together which would cause me to have an audible wheeze every time I breathed as a result of constricting the airway since they weren’t moving on their own. Or we could inject one and just “see how it did” hoping that it would have a nicer tone and move back to where it should be. As it is they are perpetually open, causing me to choke on my own breath and liquids sometimes. This whole little injection thing is usually no big deal, a same day procedure where you go in and get let out the same day. Because I had a stroke, however, I would have to be in at least 6 days to allow for my coumadin and heparin therapy to kick in. This does not guarantee I won’t have another stroke, it’s just their best insurance against it, so I’m not exactly willing to risk the whole brain function thing to have people hear me.  I am a writer anyways.

I just have to remember that.
http://www.entcolumbia.org/vocpar.htm

Thanks Anne, for the info….;)