Delaney & Taylor, Who says 13 year olds don't get it?

First of all I won't pretend I'm Denise writing this blog. If you notice any problems with punctuation, sentence structure, or grammar please send all complaints to Mrs. Kennedy, my high school English  teacher. Remember when we used to just call it English, not Patterns of Communication or Literacy Works? How things have changed, but I digress...   About a week before Thanksgiving I was approached by two past students of mine at Meadow Glens. Delaney and Taylor were my students from kindergarten to fifth grade. They are now seventh graders at Madison Junior High. I absolutely loved having them in class back in the day. As it turns out they had both taken an interest in running. Isn't that interesting? Maybe I'm rubbing off on people.     Anyway, they saw a newspaper article on Facebook about what Denise and I were going through and sprang into action. It seems that they had a service project coming up in Social Studies class and instead of volunteering at a homeless shelter or something else they wanted to do something "for someone who mattered to them." That's where I come in. I cannot tell you how humbling that simple statement was to me. I get all choked up whenever I think about it.  In the article it said I was going to push Denise in a full marathon in New Jersey on the first Sunday  in May, and along with that I was trying to raise $26,200 (a marathon is 26.2 miles) for the Les Turner ALS foundation.  That's where the strange number came from. Basically a thousand dollars a mile. Pretty aggressive goal but reachable, thanks to Delaney and Taylor.    So the girls decided to put on a dodgeball tournament to help me with my fundraising goal. Their goal was $5,000 which I thought was awesome. How cool would it be if they could reach their goal while helping me reach mine. So on the week Thanksgiving, Dodgin' 4 Lou Gehrig's Disease was born. These girls were on to something, something big.   The way in which these girls went about this event would probably impress a 20 year veteran of fundraising. They sold oodles of Dodgin' 4 Lou Gehrig's Disease bracelets for $2 a piece, got M&M Orthopaedics to spring for all the T-shirts for volunteers and players, and instead of 15 to 16 teams they ended up with 22! They also created a Facebook page that has over 200 friends, rounded up 30 volunteers to help with the day's events, and the back of the event day program listed over 70 families and businesses who helped sponsor this event.  These girls are wise beyond their years; I'm sure they learned a lot along the way. For a first time event everything ran smoothly and a good time was had by all. Denise and I stayed for the whole event and were so impressed by the "community feel" through out the Field House.     The success of this event was so beautiful. I can't fathom the amount of work that had to go into an event of this magnitude. The girls raised over $13,000 for the Les Turner ALS foundation. Almost three times their original goal. To watch them during the event was a blessing. They thoroughly enjoyed all aspects of the event from planning to participating. I was so glad they could enjoy the day and see it all happen in front of their eyes. So many times In life you have all the hoopla leading up to an event and then "BAM!" it's gone and you don't remember a thing. These girls will remember this event always, a great life lesson.     Finally, what more can I say about Delaney and Taylor? I feel as if I had a front row seat to an actually blessing from God with the help of these girls. They single handedly changed my perception of today's youth. They are focused and want to be part of change. They want ALS to be cured. They believe they can help make it happen. They are making Dodgin' 4 Lou Gehrig's Disease a yearly event with an even bigger goal in mind. These girls "get it." I am so humbled to have been a beneficiary of their kindness and grace. What a blessing these two teenagers are.     Only thing left to do, run a marathon pushing my wife, Denise. It's not going to be easy pushing "Porky" but when I'm struggling towards the end nothing will stop me from reaching my goal. All I need to do is remember back to  January 13, 2012 and that above all will get me across the finish.  P.S. Please take a minute to check out the links to the right under Home to read more about the marathon and the tournament.

The Dry Run...

While I realize many of you may be thinking its time to move on to another topic and put the potty issues behind us... believe me when I tell you, I share your sentiments,and would have liked to report that the dilemma was resolved but that has not been the case.  So hang in there, and try to summon the courage to continue reading. You may find yourself wanting to look away but feeling compelled to peek the way you do when passing a car wreck...

The private garments arrived via the Internet and so the day came when I ventured out, fully outfitted for the Dry Run! I'd like to point out that this was an attempt to gauge comfort and feasibility, with the expectation to be somewhat uneventful and to quite literally experience a dry run, pun intended!  

I had no such luck, and learned quickly that I could not depend on Depends to fIt my bottom snugly enough to hold the inevitable deluge...proving my theory that they could not possibly work for a everyone between 115-190 lbs. Not having planned for the possibility of a wet run, at the age of 49, I had my first ever Commando experience...you can stop laughing now!

Desperate for a solution, I finally called to schedule "The Big Fancy Test" I had been avoiding. The directions for test preparation included arriving with a full bladder. Really? You must be joking! If a had the ability to arrive with a full bladder and not lose control, I would not need the test! I opted for sipping some water on the ride there, in hopes that some would make it to my bladder before the test began, this appeared to suffice.

The technition who performed the test was very pleasant and explained the procedure in detail before she began inserting tiny long tubes with electronic sensors in very private places. Once again humbled by the embarrassment of my business exposed, and with the added pleasure of being wired to measure fluid levels and contractions, I decided this was the equivalent of having Chris in the delivery room, had we shared the experience of the birth of a child. This was a new level of intimacy that would certainly enhance our marriage...good grief!

Although, I still maintain the opinion that a non-invasive catheter is an oxymoron, when it was all over and done with, I'd have to admit it was not that bad. I'd been through worse, and I had minimal discomfort following the procedure. 

Two weeks later, we met with the doctor, our own Christina Yang, and learned that my overactive bladder was contracting intensely when it was filled far below capacity but it was otherwise functioning normally. Since the medication I was taking was not helping, there were two others I could try before resorting to more radical approaches to resolving the problem. 

She went on to describe a procedure where they use a pacemaker to regulate the nerve impulses that cause the contractions, and although that sounded interesting, I was still hoping one of the two medications we had yet to try would do the trick. In the meantime the nurse suggested we try the XL size kids pull ups, as I would likely fit into the size range and prevent leakage in the event of another incident.

Another two weeks have passed since I started the new medication and I am happy to report that it appears to be working. Unfortunately, there were some side effects I should have paid more attention to that resulted in an unscheduled visit to the ER last week, but with extra fluids and a extra large bowl of Raisin Bran every day, I hope to avoid a sequel to that unpleasant trauma...

While the pull ups with the cute butterflies, hearts, and peace signs are much easier to laugh about, I'm ready to give them up now... So let's hope this is the last you'll hear of my dysfunctional plumbing; I think we're ready for some new material...

Always Looking Sexy...

When we got home from the last plumbing appointment, I read through the paperwork describing the two tests that would be potential next steps, and decided the prescription was going to have to work! 

I began taking the medication and tried to convince myself it was working, but three weeks later, I was still unsure that anything had changed. I took some time to research the medication online, and read that you could take as much as 10mg daily and I was only at 5mg. So, I decided to call and ask if we could increase the dosage, hoping that would work. I was given the green light and informed that sometimes the medication took time to work and to give it a few weeks.

Wanting desperately to avoid the tests, I increased the dosage and willed myself to believe it was making a difference... but in the end, in the battle of mind over matter,  my will could not prevail, and embarrassing events began to occur more often than I'd like to admit. 

It had gotten to the point that I had to seriously limit my fluid intake, especially if I dared to push my luck and leave the house, but it really wasn't the best solution as the lack of fluids in general made me feel worse. 

While at the clinic for a study visit, a sample was requested, and since I was unable to comply,  I had to admit to my less than brilliant strategy of fluid limitation.  I was warned of the harmful effects of dehydration, and encouraged to utilize protective products to deal with the situation. After all these high tech garments were invented for the astronauts, there's no reason why I should be embarrassed about using them!

Oh sure... Use the high tech argument with the geek! Just because I like computers, and software doesn't mean I'd be eager to wear Depends!  However, I had to humbly admit, I needed to try some kind of a protective garment, at the very least when out of the house for extended periods of time. 

Okay, so the way I figured it, the most discreet way to handle this would be shopping for them on the Internet, and Amazon.com seemed to carry everything I've needed so far, and the search commenced. 

I wasn't prepared for the expansive selection, and the attempts at persuasive marketing to lure potential buyers. Although I needed them, it was apparent to me that I was not their target customer when I felt no excitement after reading "Now in new soft peach!"

The product features were interesting: 
Size: small/medium fits 115 - 190 lbs -This was of concern to me; how is it possible that one garment could properly fit individuals that range 75 lbs in body weight?  

Two ways to change: step-in & pull-up OR easy change with 4 secure Velcro® closures, sounded too much like the description on diapers for toddlers. 

Maximum absorbency, captures and locks in odor, okay, sounds useful...

Quiet and comfortable, you mean to tell me these make noise when you wear them? That ought to be hilarious!

Made in the USA from domestic and imported materials... Seriously?

And Unisex? It's been a while since I had to purchase diapers for my daughter, but I do remember them being gender specific, why would that change for adults?

At any rate... I had to make a choice and none of the options were going to come close to matching my favorite French lace bras, so I had to find some way to have fun when it came time for a dry run with my new undergarments.   And well... wearing my matching panties over the soft peach granny pants doesn't mean I've lost my mind, it's just an example of my resilient sense of humor!

Sorry Honey... ALS does not stand for Always Looking Sexy!

Time To Call The Plumber!

Okay, there's no getting through this without grace, humility, and lots of humor... 
So it was time to put on my big girl panties and call the plumber.

Going back about fourteen months, I began to notice a sense of urgency. At the time we were still playing "What's My Disease?" and for the moment, I was being treated for Lyme's Disease, with a daily regimen of self administered antibiotics via a central pic line in my arm. I was told the medication was strong and it could have side effects, so just in case, I mentioned my symptoms to the nurse, on my weekly visit;
we ran some tests but nothing turned up.

Months passed and we had a name for my disease, but I was told it spared the plumbing so I occasionally requested another test, but to no avail. This pattern continued for a few more months, until I decided to ask my gynecologist on my annual visit. She asked a few questions, drew me a rough sketch of the female parts while providing something of an anatomy lesson, using phrases like "This is where the pee is, and this is where the poop is...". 

Seriously, I can't manufacture fodder this entertaining; perhaps I appeared to have arrived via the short bus, in any case it was amusing, she ordered more tests and referred me to someone better equipped to help me with my problem, the plumber.

Apparently, plumbers of human pipes are as busy as the regular ones, so I was offered the first available appointment some six weeks later, and my problem continued to worsen. My legs were progressively becoming harder to move and my bladder, harder to control; this was heading in a bad direction.

Finally, the day came and I was filled with hope that relief from this socially unacceptable behavior was within reach. The doctor looked a bit like Christina Yang on Grey's Anatomy, and projected a much kinder disposition; the combination was both comforting and reassuring in odd way, as I lay exposed for examination. She poked around in much the same fashion as her predessor with a new twist...    

A Kegel? Sure, I know what that is... Oh, you want me to do some now? Of course, I can do that. Yes... I know it's not a leg exercise, let me try again. Sheesh! I'm glad we cleared that up...

She described a few different ways bladder issues can present in patients, some of the likely causes and respective treatments, none for which I felt any particular kinship.  And most certainly not the one where she surgically creates some kind of flap to support a worn out muscle, I'll do Kegels from sun up to sun down to avoid attending that surgical event!

So, she explained, we will start with some medication and see how that works, and if that doesn't help, there are some additional tests we can set up. One is a flow test and the other is a Urodynamic study, but let's wait on the Big Fancy test; we won't do that if the medication works.

The nurse came in to follow up with the RX, provide paperwork that describes the two tests that would be possible next steps, along with my homework assignment a Void Diary. That was a clever name for a journal to record every ounce of intake and output including any spillage along the way...

So now I had to document the whole embarrassing ordeal, and return with my shameful diary, but it didn't end there!

Stay tuned for the next episode when we explore The Big Fancy Test!

I Believe...

Have you ever noticed the power Santa garners this time of the year? If you are a parent of young children, I’m pretty sure you do… and I’m guessing you too, have used it to your advantage.

It seems that magically around Thanksgiving, when all of the stores begin to look like Santa’s workshop, children are much more aware of their behavior; they become unusually attentive, obedient and even more affectionate, generously  tossing “I love you Momma” the way they used to toss Cheerios off the tray on their high chairs!

If you haven’t seen this change, you have not done your part to foster the myth. Try playing your favorite version of "Santa Claus Is Comin' To Town" and be sure to sing along loudly. Better yet, encourage them to sing with you, and teach them the lyrics. It seems regardless of age, these clever little humans, have the cognitive power to grasp the concept and then…you’ve got them right where you want them! Once mastered, it’s nearly blissful from mid November through December!

Now, if for some reason this is not working, and assuming you’ve done your part, technology can help you. There’s a website where you can create a personalized video, and send it to your child from Santa. Speaking from experience this works like a charm! Google PNP (Portable North Pole) Santa and get working on it right away, it’s already December 7^th after all, and you don’t have much time left!

By now you’re thinking …Where is she going with this, and how does it relate to ALS? Well…while thinking about this phenomenon the past few days, and seeing tangible results, my mind wandered off to the premise, that we are all children of God, and much like we teach our children about Santa: He sees you when you're sleeping, He knows when you're awake, He knows if you've been bad or good, So be good for goodness sake… as the lyric goes, many of us are also brought up with the concept that God, is all knowing and omnipotent, and one day we will all be accountable for our actions; for some of us… that day will come sooner rather than later.

So, the question is, has that belief impacted my behavior?  Sadly, no…I cannot say that knowing this has always influenced my actions, and I can’t even say that since learning of my diagnosis, and the inevitable prognosis, I have significantly changed for the better, but my priorities have changed…

December 10, 2010, the morning following news of my diagnosis, I was lying in bed after spending most of the night sleepless, weeping in my husband’s arms, and the phone rang. It was early, but looking at the caller ID, I could see it was a close friend, who knew I would likely be awake, and I was pretty sure she was checking to see how the doctor’s appointment went the previous afternoon, so I picked it up.

I’m not sure of what I said, or how she could even understand me with all of the waterworks going on, but I do remember something she shared with me, that helped shape my outlook as the dust settled in the months to follow… thank you my friend.

She told me that Elizabeth Edwards had died just a few days before, on December 7^th 2010, and she read me an excerpt from this statement on her Facebook page, the day before she passed. I have included the full text below and bolded the excerpt.

You all know that I have been sustained throughout my life by three saving graces -- my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And, yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel to everyone who has and continues to support and inspire me every day. To you I simply say: you know.

With love,

Elizabeth

December 6, 2010

Chapel Hill, North Carolina

Oddly, she died one year ago today as I am writing this, and the excerpt is really all that I can remember from that phone call, but the text is rich with wisdom that has carried me through the past twelve months. 

We all know that eventually we will pass, and for those of us who believe in God, we know He’s watching, and there will be accountability, but we also know that we are human and fallible and we are forgiven.

So, while I know my time here will end sooner than I had anticipated, I take comfort in the opportunity to spend my remaining time finding ways to savor the moments, to leave nothing unsaid, and love without limits…because in the end, that’s all that really matters, and having this time is a blessing because... I believe.