The Ugly Post with the Important Message

Today I learned a new word. Suprapubic.

If reading about this particular symptom of my disease (that being urinary incontinence) leaves a foul taste in your mouth, then, by all means, wait until the next post. But this one is going out there because writing into  this vast expanse, this great void known as the Internet, sometimes helps me to organize my thoughts. Occasionally, I’m lucky enough to have other people weigh in and provide their opinion; I value that more than most would imagine. I don’t expect medical professionals to be reading my blogs and providing me with solid medical advice. But just getting someone else’s take on what I’m going through is sometimes more useful than a doctors appointment that I waited six months for.

On point: urinary incontinence. It’s despicable. The frustration it causes is equaled only by the tremor which prevents me from doing so many things. In this respect, the incontinence is not much different; I am unable to leave my house without an extra condom-catheter (my current preferred means of catheterization is by using what is referred to as a “male external catheter,” (or MEC for short), an extra extension tube, an extra leg bag, as well as a complete change of clothes – socks, boxers, pants, and a T-shirt just in case; one never knows exactly how messy one catheter dysfunction from the next will be. When I say my “preferred means” what I should really be saying is “ONLY means.” The tremor makes it impossible for me to catheter internally (that would be directly into my urethra, the image on the left in the link above), on top of which, I am very susceptible to infection, as I’ve only ever cathetered this way once, and the next day I was close to having a full-blown relapse due to the inevitable urinary tract infection which set in almost immediately. It was done in the most sterile of environments: a hospital, by professionals. Still, the resulting infection was something that, if I can, I would like to avoid ever experiencing again. So this suprapubic catheter provides a third option. After having had my urologist explain to me, in brief, how the procedure to insert it would be performed, I’ve become very aware of my pubic bone (we all have one, between our bellybutton and our’junk’). This (suprapubic) catheter would be inserted just above the pubic bone. From there, I’m given the choice of whether I want to attach a leg bag, or insert some kind of blockage device which would plug the catheter. When I feel I have to go, I simply unplug, drain into a urinal (a plastic, graduated container, also part of my “just-in-case” gear that I carry around in my backpack) and do what you would normally do with your urine, and flesh it down a toilet.

Of course, the whole thing is not without risk of further infection. What little research I’ve been able to do has led me to read that it is of tantamount importance to keep the catheter site clean. That it requires frequent flushing with a saline solution, somewhere in the neighborhood of 60 cc by syringe. Leads me to question whether I’d be able to perform this task as well, given the unpredictability of my tremor from one day to the next. Oy.

I use this blog to organize my thoughts, to gripe, to whine, bitch, and to moan, but it always ends the same way… With me saying “I’ll figure it out, I always do.”

Multiple sclerosis. It’s been the bane of my existence since age 2, when my poor father was diagnosed. That was almost 30 years ago, and it has not let up for an instant. And I am but one of the 75,000-odd Canadians caught under the crushing weight of this disease. Having said that… It’s that time of year again folks!

Once again, my family and I will be doing the “MS Walk of Hope” and so I am, as I do every year at this time, soliciting donations for the MS society of Canada. Whether a cure will be found in my lifetime remains to be seen, but one thing I know for sure is that we will never grow closer without the support that I typically receive from my friends, family, and the like every year. This blog has become (dare I say) inspirational to many; the fact that I am able to discuss my disease with little to no restriction, so candidly and openly, may help somebody, anybody, and that is why I continue to write. On its most visited day, this blog has seen 488 visitors. This was likely due to its address being published in the Globe and Mail in article I was cited in discussing my experiences in Costa Rica getting “Zambonied,” or having CCSVI surgery, if you so prefer. Still, I have 111 loyal followers, and to every one who reads everything it is that I write, who listens to my griping, my groaning, and my whining, I have nothing but words of thanks. I’m not asking for money for me; I’m asking for money on behalf of the 75,000 Canadians suffering from this disease. If you feel so inclined, follow the link below, and please make a donation. No amount is too small, and conversely, no amount is too large either!

MS has taken much from me, potentially even more from my family – as the one suffering from the disease, I gain first-hand experience about what it is that life under the exhausting weight of the disease is like. My family and friends are innocent bystanders, unable to do much, aside from keeping my spirits high (which they excel at, I must say). I know I ask every year, but I ask for reason; I want nothing more than to see this disease become a thing of the past, to see a future free of MS and its crippling effects on people and families. So please give. I implore you.

Yours in health,


One thought on “The Ugly Post with the Important Message

  1. Diane Durso says:

    Even in the face of this ‘ugliness’ you manage to make me laugh (and cry). So very proud of you. xoxo

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