Action Magazine

Just read through a magazine I had received in the snail mail this morning - called Action. It is put out by the United Spinal Association. Evidently, I received it as a member of the Mid-Florida Chapter of the MS Society, and I'm glad it was sent to me.

It is really quite good, easy to read/follow; and I must admit quite appropriate articles on issues like urinary retention and bowel issues. You can check out the articles at: Action. I don't know why I was surprised - but MSer's seem to share a lot of the same issues with those of us with spinal cord injuries, and the articles (IMHO) didn't seem as depressing as the ones in the MS Magazine.

If you are in the Central Florida area in August, there is the "Independence Expo" in Orlando from August 7-8, and the National MS Society will have an exhibit booth there, #205.


Action Magazine by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The ER

Once again I found myself in the Emergency Room yesterday - with the same issue I've had for 10 years - my urinary tract - or sphincter muscles - go spastic, and I can't void. Yes, it is exactly what it sounds like, I can't pee.

If you've never had this issue, and I truly hope you don't - the pain is immense. The remedy is quite medieval, as a tube needs to be slid up where no man wants a tube slid up - and drains the bladder. When the blockage happens though, I actually look forward to this invasion, my definition of the the lesser of two evils - and the joy in seeing the backed-up water pour down that tube once the bubble is in place, is as enjoyable as popping the top button on your pants watching the football game after your Thanksgiving day feast!

Now many with MS and other issues do self catheterising - and I admire them - but I just haven't gotten the nerve to learn how to do it yet; though I'm starting to think I may from a cost/convenience stand point. I'm sure I can do it, after all, I didn't think I could give my self a shot, either.

However, my point in writing about this is not me being a wussy and not wanting to take on this new challenge, but rather to talk about the nurses at "my" ER.

Simply said, it is amazing to me how kind and helpful people can be when you let them. Like many of us, I have always been proud and would rather help someone than be helped. But you learn quickly that sometime you need help, and these nurses are real "pros" in the helping area.

The triage nurse sees me coming - and more often than not, will get me in the back while she is doing the required work-up. Anyone that has been in an ER knows this is a big deal. The compassion in her eyes is evident - and she doesn't make me beg - being a frequent flyer does have its advanages.

Now technically, I expect the medical professionals to know what they are doing - but with my particular issues, I truly appreciate how they are able to leave me with my dignity after "performing the procedure". Humbling, actually - but an act that is greatly appreciated - which I'll be sure to "pay it forward" in my own little way.

So ladies, I won't use your names, but you know who you are - Thank you.




The ER by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Never Pass a Bathroom

The other day my wife and I were driving around, looking at properties in our area (did I tell you I'm a Real Estate Agent) and that good old feeling of "I gotta go NOW, and I mean NOW..." came across me. Those of you with this wonderful issue know what I mean. Now fortunately, we were in a particularly rural area and I was able to relieve "the pressure" by pulling off the road - well, you get the picture. I have to admit, since living overseas, this hasn't been as big a problem as it was before we did - though it does "jump" out at me every once in a while. I think I need to explain.

When my urgency problems started, we were living in Europe - England actually - our girls were small and we toured around every chance we could get. To this day I credit this period of our lives to a very unique ability I have - that of being able to find a toilet (in England, a bathroom is for taking a bath) in nano-seconds. Which for parents of small children, can be a god-send (hmmm, did I really use my children as cover-up?). It got so common in our family, that they wouldn't even think twice about how I would disappear to a hidden corner of some ancient castle we were touring and find that elusive toilet. I soon developed the habit of "Never Pass a Bathroom" because you never knew... the real family favorite was always stopping at EVERY rest area along the road because "there might be a traffic jam ahead". And I won't even get into what it was like to travel around Europe on business with this issue!

Then I was transferred to Brussels. We all know Brussels to be the center of European Government and Napoleon's downfall during that fateful battle in Waterloo (at least that's what the song said).

What you may not have known, is that they are also known for their driving, especially "priorite a droit" (French for "priority from the right" - have some fun and google it) and, no kidding, peeing out in the open!

Now I'm a I big believer in living somewhere to really know it - a quick tour doesn't do it justice (ask my oldest daughter who just moved to Mississippi!). And you will always find out the fun factoids that Frommer's doesn't know to tell you. I can't mention how many times in the first month after I was transferred that I saw men peeing by the sidewalk or next to a tree - so much so I had to ask one of my Belgian colleagues about it. With no apparent shame, he said "Of course - why not - when we Belgians need to go, we go!"

Hallelujah! The untold motherland of MSer's with urinary urgency. I must admit, as a prudish American in Belgium (by their standards) - I didn't imbibe that often in this open celebration of passing water - but knowing that I could, seemed to lessen my need to go all of the time. Amazing how the mind works.

In way of condoning this activity - I swear they have their own little god of "Peeing in the Open" - and you can find him off a little alley way attached to the Grand Place in Brussels - the Manneken Pis - and for you ladies, his female counterpart Jeanneken Pis hides herself at the very end of another alley off the Place as well.

Now, I was diagnosed in Brussels with MS, and was put on my meds at about this same time - but I choose to believe the "openness" in Brussels and the little cherub relieved my pain - not the meds.

So if you share this urgency issue with me, make a pilgrimage to this little god of "Peeing in the Open" and maybe you'll find some relief, too.

Until then, remember - never pass a bathroom!




Never Pass A Bathroom by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Early Morning Muses

They call it fatigue, but I just don't seem to get a full nights' sleep anymore. So can't fatigue be caused by lack of sleep, too? On a good night, I only get up once for that urgent bathroom call, usually around 2am, and go back to sleep, and get up around a more civilized 7am. But recently, I've been waking at 4:00, and wide awake!

Now that I write about it, I don't mind it as much as one would think I would. Some wonderful things happen early in the morning - quiet time to think, exercise at your own pace, and then there are the sunrises that I wouldn't normally take the time to look at (or get up for) if my sleep pattern was a "normal" one (...a benefit of having MS?). With all of the rain we've been having here in our part of Florida lately - the sunrises are particularly colorful - with the leftover clouds and the start of a clear and humid day.

I also find that I have a much clearer, or less cluttered, thought process at this time of day, and love to just be quiet and think.

I've always liked the serenity of the early morning. Whether it was being out by the pool listening to the quiet before the family rose, playing squash with friends or the early morning drive to one of the NY airports when we lived in Connecticut, travelling down the Merrit Parkway with very little traffic, no radio, and enjoying the solitude of my thoughts.

I'm not sure how to stop writing about this - other than to say tomorrow I'm going to embrace waking up so early, and enjoy it - now time to do some work...



Early Morning Muses by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.