It’s so peculiar. I’m miserable, I can’t stop coughing, my life sucks, why me, wild coughing fits scare the bejeezus out of me…waah!
I guess if you speak just loud enough, something might actually change. Like a swath of my medication. Between Friday afternoon and Monday morning no less, I made these docs get off their loathsome, spotty behinds (I can’t take credit for the latter…it’s Monty Python) and haul ass. I didn’t know I could do that.
Yes, Chip made the phone calls, sent the faxes, and did the follow up, but after I had had enough with the status quo. My status quo stinks. I’ve actually become sort of, kind of, a little bit used to losing my breath to the point where everything that can, exits at the closest orifice. (Before I do my hallway laps, I sit on the crapper for so damned long to get whatever I can out. I’d rather my waste material exit where it’s supposed to rather than while I’m sitting my goddamned wheelchair into which I collapse after a “lap.”
When I’m beyond out of breath, I’m only dealing with waste products. Once, with chemo, everything said bye, bye. (I’m insane. I’ve walked two blocks and, strangely, I become nauseated until I urgently need to vomit. (That’s not supposed to happen. I shouldn’t feel the effects of the chemo until four hours have elapsed.) I’m at 77th and 3rd. What do I do? All the cars were parked fairly close together. I couldn’t, heavens, mess up the sidewalk! But I kept in for a few valuable seconds what turned out to be the best projectile vomiting experience ever! Depending on how you define “best.” Boy, did that stuff fly!
The nuclear explosion of vomit remained inside my pathetic self until I found a suitable spot between two parked cars. By choosing this particular spot, there would be no evidence of the carnage in front of any of the car doors. I really hate stepping in dog shit (or cat shit as the case may be), and I really hate walking into some stranger’s vomit. It’s plain disgusting. That night I could sleep easy knowing that I didn’t subject anyone to my expectorations. I, even, with the help of my beloved friend, Dr. Audge, who keeps a million bags on her for her daughter who invariably gets carsick, kept the cab that took me home clean. That took some doing, but it never would have been possible without Audge’s bag. Bless you, Audgela.
But yes, I do try and excrete all I can before attempting exercise. Because if I’m going to pee in my pants, it better not be more that a drop or two. So far, that’s been the worst of it. I despise not being able to breathe, but I now accept the fact that it will never come back. As you know all too well from my last post, the damned coughing scares the shit out of me.
Man, this morning the pulmonologist prescribed this fresh-from-the-farm gel caps (“pearls”) that stop the coughing mechanism. You still are able to cough when you need to, (you won’t choke to death) but you won’t when you don’t. Woohoo! So far, so good. Dr. Pulmonologist also changed one of the drugs in the nebulizer, so I can have relief all day. We have improvement.
Charlie, you are beyond right. You have to be your own advocate, because your doctors aren’t going to give you the heads up about new drugs that may help you live another day. Or live a better day. Right now, all I want is to have a life that I would choose to live given all my obvious limitations. I want my conscious moments to be as pleasant as they can be. I think after this wild weekend (for me) of change this may yet be possible. To be continued.
Which leads me back to my beloved Maggot Brain. “Maggot Brain” is a remarkable guitar instrumental that leaves me breathless, speechless, and awestruck every time I listen to it. It begins with a word from god or at the very least, the guy who is the disembodied Voice at The Hayden Planetarium if he were a black dude.
But no. I think it’s George Clinton speaking to us all from somewhere out in the galaxy. (Forget the end of The Moody Blues Days of Future Past. That’s just plain silly and pretentious. George Clinton may be too. But I don’t think he’d mind if you told him so. I think he would shake his head internally knowing that you just don’t get it.) He says:
Mother Earth is pregnant for the third time
For y'all have knocked her up
I have tasted the maggots in the mind of the universe
I was not offended
For I knew I had to rise above it all
Or drown in my own shit