Neurogenic Bladders, M.S., and Catheters! Oh, my!

 Dear Fishes-

       When it comes to sharing on the internets, one can never share too much or can they? I have this certain feel that I can share on the interwebs because I know that there are others out there hurting as well. I write mainly because it amuses me and helps me to get my thoughts out about subjects I don't feel I can fully explain in person. If you have gentle ears or delicate eyes, don't read below...it's probably for the best...for all of us. 

      Today I went to the urologist at the University of Utah. Going to the doctor is about as much fun as getting a shot and having hemorrhoids--but it's a necessary evil, let alone a specialist that looks at genitalia all day. Would that be considered porn? Asking for a friend...Going to said urologist in the past has involved "Urodynamics" on the bladder--which is like a track and field day for your bladder in the Olympics. I never thought I could be prostrated in such ways and be made to feel like a science experiment like that. It's a test to see if your bladder is emptying out all the way. They pump you full of water through a catheter and then do weird tests where you pee into a large cylinder and the doctors measure the rates at which your voiding your bladder. *Fancy* I used "voiding" as a doctor would....the things I've learned with 24 years of experience with M.S... 

       One of the first things to go when you're first diagnosed with M.S. is your bladder. It's just part of the disease. The idiot doctors that I had to deal with in Bakersfield, CA didn't realize that 25 years ago, and made me suffer needlessly for a year before I was fully diagnosed with M.S.. I remember going on dates with guys and they would make comments about how often I was going to the bathroom; I thought it was normal at first, but then it began to be a problem, during college classes, and just living life. I found out that bladder retention is also a nasty bedfellow of M.S. and that the brain and bladder don't sync up properly so there is an issue with urination. When you can't urinate, when you feel you need to, is a huge problem. It's painful to say the least. 

      Fast forward to today; I catheterize about 5-7 times a day because I have a neurogenic bladder. What does it all mean? It means that your brain and bladder don't sync up with each other and so your bladder acts amiss and sometimes creates incontinence, or bladder retention so that the urine that is inside you causes infections--which can lead to many different maladies and possibly death if your body becomes septic from it. 

     I started catheterizing at the tender age of 35. Not cool. I remember crying about it, thinking that my world had caved in, but in actuality, it gave me freedom. Catheterizing drains out all of the urine and thus allows you to have a functioning bladder that then doesn't need to pee every twenty minutes. Whew! I like to call catheters "pee straws" and I have euphemistically called the act of catheterizing itself likening it to holding a capri sun upside down in the dark, while trying to put a straw in it, while your body is on fire. That's the best description that I can come up with how to describe what it is like putting a pee straw into your ureter (pee tubing). 

      Since catheterizing, I've had instances where the catheter malfunctions due to operator error and then you get urine all over your underwear--then you have to get rid of said underwear and go commando. Awesome. Said no one ever. Sometimes it gets on your clothes and you look for your nearest escape routes. I usually carry a bunch of towels, in my car, with me for just in case situations as stated above. 

     Why do I talk about taboo subjects regarding the body? Because it needs to be talked about, damnit. There are far too many people suffering in silence that don't talk about these things and bring awareness to others, especially ignorant individuals...then again, ignorant individuals are everywhere and it all just reminds me of childhood when I briefly lived in a small town in Alma, KS (which should have been labeled as hell) with people that their only desire was to stay within that small town and do nothing with their lives. My apologies if you are one of those individuals, it needed to be said. 

       I love how people are just so secretive when it comes to body parts not working right. People do and say weird things to keep from telling you that there is a problem with their body. i.e. The Netflix's Queen Charlotte's husband's health dilemmas. Spoiler Alert. I'm sure it happens in real life, I've seen it. People don't want to interact with others that don't understand or aren't willing to understand. I have a friend that has health problems and her family is atrocious to her, despite her having been through breast cancer twice and residual pain. It's sad to watch. 

        Pee sticks (or catheters) are just a part of my existence at this point, due to having M.S....it is what it is. I can't change that fact, so I have to adapt, even if adapting makes me into something I'd rather not be. Also, catheters are expensive. Typically the ones that I've used are single use ones, so that's good. There's not a market on the black market for catheters that I know of at this point, so I should be good about not having people steal my catheters. If someone steals catheters, they're just a bastard. There I said it. 

       I think of the body as being just that, a body, nothing secretive to it or forlorn, just an organism that each one has a set of limitations or distinct differences to it. I've been poked and prodded for over 25 years now, it is a moot point in my book. I have become a science experiment and it wouldn't surprise me if there has been some scientific discovery using my residual body parts that have been let go, like Henrietta Lacks. I hope my body parts and etc have the propensity to do good in the world. I'll probably never know until I die...which I'll be dead, so I won't be around to really care at that point, so there's that. 

      Catheterizing is painful at times--it's not supposed to be, but it is. There are different kinds of catheters. Men have really long catheters because their plumbing (penis and urethra) are longer (depends on the case) on the outside. Women have shorter catheters because our plumbing is on the inside. There are different types of catheters for men and women because of the aforementioned stuff above. The bentleys of catheters costs about $12,000 for a few months supply. I've had those, they come with a bag. Brings new meaning for people that need clean pee for drug testing and the like. I wouldn't sell my urine, but there's always caveats to life...the cheaper catheters are more discreet, nothing like this writing. I have small pink ones and they're in a small tube, but they're harder to manage. They're more unpredictable in nature because of their size. It's the closest I'll ever get to knowing what it is like for dude's to use the toilet. I have sympathy for them--they get all over the place...so do catheters. Thus why one has to lift the toilet seat like a dude. 

       There are other types of catheters and the urologist lets you pick out an assortment of them to try at home...they have what looks like a candy dish of them and you're expected to take them in a little parting bag with all of the accoutrements of seeing a urologist.  I do not recommend the ones without lube. Lame. That's like trying to put a straw into tubing without something to make the transition easier. WHY?!?! So painful. I did hear that catheters started off as a sexual toy of some sort back in the day, but maybe that's a wives' tale. Who would do that for fun?! Those are the kinky weirdos you should look out for. Somehow it became a medical device. 

       I've met different schools of thoughts when catheterizing, most prefer to keep it a secret, even when things seem awry. Some people are ashamed of it. I'm kind of like, "I don't give a flying F*%&" really. That's what twenty five years in a body that doesn't function properly feels like. The 25 years ago me would have been mortified if I had even said any of this. Embrace what you've had to become to survive, is what I say. I never thought I'd be a size 24 and look at where we are. I used to be a size 4 years ago as an adult and it was glorious at some points--I looked like a Ferrari and now...well, now, I look like a pinto. Medications, severe depression, suicidal ideation have all been reasons of why I've ballooned out. Also shout out to depoprevera. Bastard, really. Made me gain an inordinate amount of weight for fixing my periods back in the day. Rat bastard, really. 

    In conclusion, I've seen a plethora of urologists across the U.S. at prestigious places for medical locations. Do I think one is better than the other? Sometimes. I've had great success at the U of U because they seem to be more on the ball with things and finding the missing pieces to your problems. I've been to Rochester Mayo clinic, UCLA, Cedar Sinai, and many other fun filled ones. 

      I guess the main thing is that you shouldn't feel bad for people that have to catheterize; if anything, you should be happy that they're getting the help that they need. You might be the one that can't sit for too long and may need to go see a urologist after all. Pee sticks (catheters) might be in your near future...

       See ya in the sea anemone, 

             B.