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.


Tuesday, December 29, 2015

Time to Change the Wallpaper



I hope everyone had a wonderful holiday season...I can't believe it is almost the start of 2016!

I'll admit my lack of energy has really won out over my writing the past few months.

There is a lot of guilt that comes with having a disease like MS...am I giving enough to my family?  Am I being the best husband and best father that I can be?  Am I being the kind of friend that my friend's deserve?

It doesn't feel great when my MS causes me to miss an event...or our daily plans change in response to my disease.

It puts incredible stress on my wife and introduces our children to ideas (chronic pain, IV treatment centers, daily medication) that, as I look into their pure and innocent eyes, I'm not always prepared to talk about. 

In my dream world, I would relegate MS to the background of our family.  The loud, obnoxious and outdated wallpaper that needs to be changed but, in the meantime, we are able to live with it.

Unfortunately, dream worlds are just that -- dreams -- and MS has too often interfered with my health and as a result, finding a regular writing schedule has been problematic.

It bothers me that I've faltered in this area of my life.  I'm competitive and I don't want MS to beat me but, to be clear, it's much larger than that.

Writing about my MS...communicating to the world how it is to live with a chronic disease...giving a voice to others who might have similar struggles has become a mission to me.  So a large part of me feels unfinished.  This needs to change -- and it will!


Did you know I have an eye patch that I used to routinely wear while working from home?  I even snuck it into to the office at USAA a few times and would quickly wear it when nobody was around or looking (or at least I hope they weren't!)

In addition to sharing more of the "76 Things" (like about my eye patch above), I also look forward to sharing with you more stories, including when and how I was diagnosed at The Mayo Clinic in Rochester, Minnesota.

I look forward to 2016 and hope you visit often to read about my journey with MS. 

Happy New Year!















©2008-2015 Michael J. Wentink, Jr., All Rights Reserved.