How I respond to criticism

And im left with this arguably obscure url in wakingseconds.com.

My frugality has a rough time with any and all waste. This leaves me thinking about the whole 20$ I spent with a few clicks on the WordPress website, and how I it waste by definition.  People seem to enjoy the stuff I post here. My experience leads me to believe that it does some good–as with many, and definitely for me (I suppose then that it is my blog.) I decided to throw a url and see if it was available. It was, and so, I started writing about my socks, as i was facing a challenge. My Mother indoctrinated my manner of thinking, and she is sure to agree (I think?), when faced with a challenge, it’s just another opportunity.  I figured out the socks thing. The elation I experience when I roll one sock into the other brings me such joy (I just signed a lifetime contract to fold socks for life–and that makes so very satisfied.  Standing to pee is but a question of time.  For the last 7 years, I have been willing to do anything and everything to fight my overall disease. I thought I would have to deal with problems sequentially (also why as far as disease with no known cure, MS is kind of neat.  Look, I suppose when you’re in the box, you are free to comment on it. I like the fact that I have a once monthly meeting with an incredibly well educated man with an unparalleled level of patience in my neurologist,  Dr. Lapierre. I’ve known his name my entire life (dad was dx in 1985, I was born in 1983.) Since my dx date, I’ve met with or been treated by something like 45 specialists in 2 countries and 45 provinces.  When I meet someone who is well educated and has time to sit with me and help me solve a puzzle,  well, my perception of events is backed by confidence to push forward, to carry on, to solve the f****** puzzle.

Though others may be taken somewhat aback by thos statement,  it rings true for me.

I figured out the socks.  I will stand again to pee. I had a childish reaction to a piece of criticism, and briefly thought “screw this”, but dans-le-fonds, I write for ME. It is something which I was never unable to do. You cannot even imagine how good it is for me! And though I’m hardly a! man of faith, I feel that everyone who has read my “drivel” will likely appreciate the continuation of my blog.  I just need to establish a difference between what is private and what can be shared. Malissa knows how bad I am at drawing that line. She really must love me ( and I’ve her!)

MS walk in May, but the fundraising starts now. Donate, if you’re able to!

https://secure3.convio.net/mssoc/2014mswalk/dashboard.html#gift-add

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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!

http://bit.ly/xXaJRV

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,

-A.D.

School First!

It’s not just a lame excuse – in the last four or five weeks of my eight week English course, I’ve learnt that, despite what you may think, I really don’t know how to write formally. I know! It came as a shock to me too! Who knew that formal English writing was so very different than this loosey-goosey, creative drivel that I post for other people to read. I’m still doing well. Of the four assignments I’ve turned in so far, I’ve got an A-, a B, and an A+, and one as of yet unknown. But if I had to guess, I’d say somewhere between a B and a B+. While it may not seem that bad, for me, it’s not good enough. I’m back in school to get As. Anything less is unsatisfactory, especially considering I’m taking one class at a time, I’m doing it from home, at my own pace, and am mostly unfettered by external pressures like work. I guess my work has turned into managing my disease. And in all honesty, it really does feel full-time job some days.

To the point…

I struggled with this one, I really did. How could I, in good conscience, ask people for more money, after the unbelievable outpouring of generosity that everyone was so very helpful with last year in getting me down to Costa Rica for the unproven, experimental CCSVI treatment/venoplasty. As the date for the walk grows closer, I was struck with the realization that, for now at least, MS is for life. And until more research is done, it will continue to be so. That research is funded, in majority, by the generosity of people like YOU. My friends, my family, even people I don’t know all too well, you’re all going to have to bear the burden of being asked for money. Once a year. Until there is a cure.

So, as in years past, I humbly ask for “your two cents” – literally. As always, any donations upwards of $20 will be met with a tax receipt to help shave a couple dollars off your 2011 tax return. We are doing something a bit different this year, and are not walking as “The Bad Puns”, and have instead joined forces with a friend of mine, rapidly becoming a good friend, who, like me, is doing her best in an effort to reach the upper echelons of “corporate whoredom”. She successfully solicited corporate sponsorship for our team this year from Reebok, her employer. Respect.

Our team site can be found by clicking the link below, typing my name, then click either “Pledge Me” or “Pledge My Team”. Either works… it all goes to the same place.

click here for our team site!

Since I’ve been “Andrew of the Missing Blog Posts” lately, I suppose that at the same time as asking for money, I should let you all know what’s been up, and how I’m doing.

Just this week, I had one of the best experiences I’ve had since diagnosis; a holistic nutrition company that specializes in working with people with neurological disorders/diseases/problems (Neurotrition) has helped put together a menu, a menu based on my disease, as well as all the medication that I am taking, with the hope that doing the simplest thing, changing the way I eat, will have some beneficial impact on the condition of my health. I’ve given it drugs, pills, injectables, and most recently, have altered my venous system. But all of it to little amelioration in my overall health. And so, I figure, why not do the simplest thing: radically alter my diet. And radical it is… I’m going vegetarian. I’m going organic as often as possible. I’m even leaning into veganism. Me, a guy that used to live in a place nicknamed “Cowtown”, where I ate steak three times a week, and when I wasn’t eating fatty red meats, I was eating horribly processed, packaged meals. At the time, I figured “other people are doing it”. What never came to mind, was that those other people likely did not have a genetic predisposition to a monster of a disease like MS, something which I did.

All I can do is kick myself about it now… and do what I can to change my ways. So, stick around folks, let’s see what altering my intake brings.

As always, here’s hoping…

-A.D.