Saturday, December 17, 2011

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!

Wednesday, December 7, 2011

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 7th 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 7th 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,
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.

Friday, December 2, 2011


First, I feel that I must preface this post with an explanation, as I am getting phone calls, e-mails and general inquiries, about my condition. Since we have had a bit of a cold snap, and my allergy trauma should be toned down by now, it seems that the closest of friends are beginning to wonder if I might actually be slacking off at this point... fair enough! 

Thank you for your concern, I am getting some relief from the allergy attacks and I have backed off the allergy meds to clear my head. So I am somewhat functional at this point. However, the title for this post, Thanksgiving, should give you some indication of just how long ago I began working on it. 

So... clearly I am late to the party, but lets just embrace the fact that I've shown up at all and move on to the topic at hand because it is already December, and I am going to end up distracted with my holiday shopping if I sit at this PC much longer. (Yes, self diagnosed A.D.D. too...I'm a real prize!)

When I began this post, I really did have Thanksgiving in mind, but as you read it, you may detect the places where interruptions demanded I attend to something else and well... upon my return, my original train derailed and I ended up on a different track altogether.     In the end, I may have gotten to a different place, but it must have been where I needed to go. After all this is mostly therapeutic for me, and you are along for the ride... 
End of preface.

There are so many things to be thankful for as I reflect on the expanse in my rear view...   I have always had all that I needed and then some... and as I grew older and more socially aware, I realized that many of us live in unbelievable excess, while others live in extreme poverty. This concern especially breaks my heart when I see how poverty affects children, so for some time now I have committed time and resources to organizations focused on this issue.

While I have had this awareness of excess for several years now, and made some changes in my behavior, if I take an honest inventory, I would have to admit that in my lifetime, I have accumulated much more stuff than I could possibly ever need. One could easily point to my collection of shoes as empirical evidence of my excessive consumerism. Mind you, that while I am not asking you to let me off the hook, I am not alone in this sin, many of you are right beside me and you know who you are...

This issue of excess vs. the under resourced, was even more apparent to me after I became sick. In the initial months following my diagnosis, I became obsessed with concern for what to do with all my stuff!  I know how crazy that sounds but it became a pressing issue in my mind, and while the average prognosis gave me 2-5 years to deal with this, my dysfunctional coping mechanism wanted it addressed immediately, if not sooner!

I began to lose weight, so I had a lot of clothes that didn't fit, and months before I had to give up wearing heels, so there were dozens and dozens of pairs of shoes, sandals, and boots, I could no longer wear, and that was just the tip of the iceberg...There are accessories too and what about my bike, skates, skis, and eventually my car? You can't take it with you, and I was obsessed with giving it away! "It" being anything I could no longer use.

What was it that drove me to this urgent need to dispense of these material possessions? I remember thinking that I needed to give these things to people who needed them now, and not wait for the time to come when my family would be burdened with the task of going through all of it. I've been there before and it's draining both physically and emotionally, I could spare them some of that...

What I was not prepared for was the impact the task itself would have on me. Standing in my closet holding onto a rack for balance with one hand, and grabbing clothing with the other, I struggled physically to maneuver as I filled the bags. And then without warning, my eyes flooded with tears and pain came from so deep in my gut that my mouth hung open, and I could hardly breathe. It wasn't a reluctance to part with my things, it was grief, plain and simple. 

This exercise was about letting go... giving up those things that were a part of the life I had, and transitioning to the next chapter. I wasn't going back, my legs weren't going to magically start working again, and this was the reality that sent me into hysterics.

I have yet to complete this task, I take it in small bites, because grief is a sneaky little devil, and it hides out waiting for its next opportunity to attack...
and I still have plenty for which to be thankful.