Friday, September 23, 2016

Going with the flow - not

   I’ve got my penis back.  Yay!
   Literally.  This isn’t a shocking opening line I’m using to get you to read this post!
   Late last month, while I was traveling, I stopped urinating, and I had to go to a hospital emergency room and have an internal catheter put into my penis.  I normally use a catheter, but it’s a condom catheter – and for good reason.
   I use a catheter – a condom catheter – because it’s convenient, because it lets me pee without waiting for one of my attendants to assist me, not because I don’t have feeling in the area (or anywhere else). I have complete sensation.
   Because of this, having an internal catheter inserted into my penis is incredibly painful.  It is a slow, deep burn going into my penis, like the wall of my urethra is being torn little by little. Sure, this is okay for a guy who has no feeling below the waist or neck (and therefore doesn’t feel when he is peeing and needs a catheter), but it’s no fun, to say the very least, when a guy can feel his dick.
   Once the thing – it’s called a foley – is in, the pain subsides eventually, but it’s not comfortable at all, and a tube coming out of your dick looks like a Dali painting.  You worry about the tube being pulled – will it come out? (No, there’s an inflated balloon inside your bladder. Dali again.) – and it hurts when you get a hard-on, with your penis squeezing the hard tube.  Like I said, no fun.
   There’s also the fact that pee can and will come out at any time, so the tube pretty much needs to be attached to a bag at all times.  And, as with pee coming out, things can go in at any time, so there’s a high risk of infection.
   Because of this – I got a bad urinary tract infection – and because of some traveling I was doing, I had the catheter in me for more than two weeks this time.  I’m still dealing with the infection, but at least the fucking catheter is out.
   Yes, this time.  This was the third time I couldn’t pee and had to be catheterized.  The first time was in 2000, and the second was about ten years later.  In all the cases, I was traveling, and not only did I not pee for 18 hours or so, I felt no urge to pee.  It was like I, my body, forgot about peeing.
   I can’t get an answer about why this – it’s called urinary retention – happens.  When I look online, it appears that it’s not uncommon for people with Cerebral Palsy to have urinary retention, but the few urologists I have seen say they don’t know.  They don’t appear very concerned and act like it’s not a big deal, like it’s another thing I live with, like not walking.
   But it’s a big deal for me – a huge, traumatic deal.  I don’t like worrying about when or if I pee, and I wish I knew why this happens and how I can make it not happen.  (I’m now taking Flomax, and I’ll see if that helps, but what about the C.P connection?) I don’t like not having my dick and all the fun things it can do.  Or, really, not liking my dick.            

Friday, September 9, 2016

He understands me

   I have written here before about my friend Carl.  In fact, he and I collaborated on a post in May, after he visited from up north and we took the Metrolink train to Los Angeles to attend a Bernie Sanders rally.  We have an unique friendship, one that has evolved and continues to evolve in remarkable, sometimes challenging, wonderful ways. 
   One of the most remarkable and also challenging and wonderful aspects of our friendship is that we both have impaired speech, caused by the Cerebral Palsy that we both live with. Carl’s speech is a bit less difficult to understand than mine, but it is nonetheless a difficulty that we both deal with constantly.  
   When I first met Carl, talking to each other was quite difficult.  Not only was it hard to understand what the other was saying, but it was hard to understand when the other repeated what the other said to make sure it was understood correctly.  It was a headache and, at least for me, a bit scary, and I kept asking my attendant to act as an interpreter.  Carl insisted that it was important that we keep talking to each other on our own, and, as is often the case, he was right.  In the earlier post, we wrote about discovering how to use our various devices to help in this process, and Carl even got this old dog to learn the new trick of conversing with him on the Skype-like Google Hangouts with the help of a texting feature.   
   I am very happy that Carl and I are now able to talk to each other with no or little assistance.  We sometimes use our devices, but it’s now really a matter of ease and how we feel.  Rarely is it a necessity.  In addition to being liberating, it’s a delight to me that it’s like Carl and I have our own language that no one understands.  We are like two deaf friends talking in a crowd of hearing people. 
   Recently, we were talking to a friend of Carl’s.  I said something, and the guy looked at me quizzically, having no idea what I said.  Carl repeated what I said, and the guy understood and said, “Really?  You got all that?” Carl and I just looked at each other and laughed.  It gets even funnier when someone doesn’t understand us and we understand each other.  Or when someone is absolutely clueless, thinking they understand us when they clearly don’t.