Monday, February 29, 2016

Leap Around

Every four years we get one extra day...what will you do with the extra 24 hours we get in 2016?

For me, Monday's are usually my rest day.  With two young (and very active) kiddos, weekends tend to be pretty busy.  I'm careful to never push myself and listen to my body when hanging out with the family on the weekend.

And the listening part tends to be pretty easy - shooting pains, loss of balance, blurred vision, extreme fatigue...those are a few of the cues that alert me to slow down.

So when Monday morning comes, it's time to reset myself and rest up for the week ahead.

But it's Leap Year, so a regular Monday just won't do.  Sure, I'll be resting but I'll also be writing and hoping to finish up another story to post very soon.

Each day is a new chance to be a new person.  Maybe you feel like you are in a rut, caused by work, health or something else...and can't believe that tomorrow is already March. 

The first two months of 2016 are already over but there are still ten months left to tackle those resolutions you made back in December while you were humming along to Auld Lang Syne.

Happy Leap Day!






Monday, February 15, 2016

Dream On

So dream, when the day is through
Dream, and they might come true
Things never are as bad as they seem
So dream, dream, dream
~Roy Orbison, Dream

When I’m asleep, do I have MS?

A silly question?  Perhaps.  But it’s not the first time I’ve pondered this to myself or even wondered it aloud to my wife.

I rarely dream…or, I should say, I seldom remember my dreams.  But, in the rare instances that I do, Dream World Mike (DWM) can leap tall buildings, break Olympic records in the long jump and is pretty much the greatest super hero ever constructed.

More importantly, DWM can also stand idly on his legs for more than a few seconds without the searing pain that usually accompanies Real World Mike.  Vertigo doesn’t exist for DWM (even with all the jumping and flying!), fatigue is a non-factor and my vision is always crystal clear.

In my fantasy/dream world, multiple sclerosis is nowhere to be found.

I also wonder, though – does my MS fall asleep, too?

Last night, I woke up very briefly, after which I fell back to sleep.  As fate would have it, I remembered both dreams I had – before I was woken up, and then the dream I had after I went back to sleep.

But what was more interesting to me was that it took about 10-15 seconds after I woke up for my hands  to start stinging (I wrote about the “dancingneedles” I feel in my hands in my previous post). 

In the morning, when I woke up the second time, the same thing happened.  Initially, there was no pain…no stinging…then, out of nowhere, it arrived.

Was my MS asleep, too?  Did it need time to wake up? 

Wouldn’t it be wonderful if I could somehow bottle up those first few “MS-free” moments each morning?   

Something like an MS “snooze button”…so whenever I start to feel the disease rear its ugly head during my day, I’d just press “snooze” and savor a few minutes of MS-free DWM.

That would certainly be a dream come true.


Friday, February 5, 2016

What the February? (The 2016 Edition)

There is always, always, always, always something to be thankful for…

Although I’m unsure of the origins, there is a large plaque conveying this message in our home.  You can’t miss it.  Every time you walk up or down our stairs those words shine back at you – a gentle reminder to appreciate what we have rather than commiserate in what we don’t.

MS IS A PAIN IN THE…

Each morning I awake to painful tingling sensations in my hands; it feels like thousands of needles have decided to throw a party and chose my palms and ten digits as their dance floor.  

At night, I struggle with pain in my legs and feet.  I’m not sure how it’s possible, but my legs feel like they’re on fire while my feet trick me into thinking I’ve stepped into a large puddle of water.

My wife massages my legs to alleviate the pain…and for my feet, I change socks frequently, in a fleeting attempt to “dry” them and offset the bizarre sense that I’m standing in a puddle.

That’s a snippet of daily life with my MS.  

SEEING THE SILVER

But, for others, life with MS means not being able to walk or perform even basic functions with their fingers.  That might be in my future, so it’s easy for me to cherish the physical and mental abilities I still have.

Not only does my wife provide comfort but my children take pride in helping their Daddy battle his MS, too.  I don’t take these blessing for granted - many people living with a chronic disease do so alone without the aid of a loving spouse or family, to rub their legs,  bring them warm socks, or just provide a warm smile to help make a difficult day a little easier.

My eye sight is blurry?  Ok, but I can still see and enjoy watching my two kiddos grow up, even if sometimes it’s through a foggy lens.

My health prevented me from a long career?  But, I’m able to spend so much more time with my wife and children than I could have ever dreamed possible during my working years.  

And because of MS, I’ve found a new calling – writing to raise awareness and understanding of multiple sclerosis for those that have MS, or know a loved one that are living with it.

I worry these examples come across as Pollyannaish (or worse, obnoxious) and that will dilute my larger point:   

Silver livings sometimes exist in the place you’d least expect it.

A STEPHEN KING/JOHN RITTER PRODUCTION

In early January, my wife and I were stuck in paperwork/phone call misery with our insurance company and the infusion center that administers my IVIG treatment.  It’s as if a Stephen King novel had crossed with an episode of Three’s Company creating an eerie saga of lost forms, lack of communication and endless amounts of misunderstandings.

Due to this, my January IVIG treatment was delayed as we waited to receive approval.  In years past, I’ve had my January treatment delayed by a day or two…which is reasonable, given the cost…but slowly, days turned into weeks and before we knew it, it was almost February.

But through the darkness, we started to see a light.  Perhaps this delay was all meant to be – a sign from above.

My wife and I paused and posed the question to ourselves – “Do I still need to be on IVIG?”  I’ve been doing it for five years and the good news is I’ve had no major relapses during that time.  But it also took a toll on my overall quality of life.

Because of the side effects of IVIG, “treatment week” was usually 7 days that were lost to me.  I’m saddened by the countless events with family or friends we’ve had to decline or reschedule because of IVIG, my children’s recitals or soccer/basketball/football games that I’ve missed…or the ones that I did attend during IVIG week, where I resembled the dead guy from “Weekend at Bernie’s,” my wife playing the role of Andrew McCarthy doing her best to keep me upright and steady.

Even our dinners during that week were modified as the thought of most food made queasy and if I did find an appetite, it would be led by random cravings (how about some Brown Sugar Cinnamon Pop-Tarts  for dinner!?!)

So, this period of paperwork misery gave us time to reflect on life with IVIG treatment and develop a hope that a new path could be taken.

THE FEBRUARY SURPRISE

We met with my neurologist to discuss my treatment plan and as a result it was agreed, that for now, I will take a break from IVIG.  I’ll remain on Copaxone (which I self-inject three days a week) but no longer will I make the trip to the infusion suite every 28 days.

It was stunning turn of events; from feeling helpless as we waited on IVIG approval to elation over this new direction with my MS treatment because, as a result, 12 weeks of the year were gifted back to my family and me.

Sometimes silver linings are hidden in plain sight.  It was devastating when MS caused an abrupt end to my career…but it also created a chance for me to spend more time with my family and form tighter bonds with my children.   

Other times, that silver lining might be hidden…this time, it was under a pile of paperwork and at a point of intense frustration and helplessness.  

It’s out there, it always, always, always is.  Have faith and don’t forget to take the time to look.



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