Tuesday, December 20, 2016

December 20th - Kickin it Old School Day

Please click here to check out my latest post at The Mighty.

In it, I propose that December 20th become "Kickin' Old School Day" - I hope you check it out, enjoy my words and possibly even agree!

https://themighty.com/2016/12/multiple-sclerosis-technology-phones/



Monday, December 5, 2016

That "I Can't Do the Job" Moment

Please check out my latest story, posted at The Mighty.

I don’t have to be a superhero 24 hours a day. I can admit that, guess what, sometimes “I can’t do the job."

That doesn’t make me less of a person — it makes me a real person.


 Click here to read the rest...


Monday, November 28, 2016

76 Things #21: Like Nails on a Chalkboard

After enjoying a Thanksgiving feast, many of us then partake in a post-Turkey meal nap...but for adults, that nap might be delayed or interrupted by certain responsibilities.

For example, those dishes aren’t going to clean themselves!  

What if I told you there was a way of getting out of doing those dreaded dishes?

<Drumroll>

<Wait for it…>

Ok, there is…but unfortunately, it's a symptom of my multiple sclerosis.  

I still help with the dishes but when it comes to metal pots or pans ---- I just can’t do it.

For some reason, touching certain items, like pots and pans, sends unpleasant shivers throughout my body.  
In fact, just looking at some metal items – for example, a roasting pan – stirs up this discomfort.

Even as I think about it while typing, I can feel the shivers starting to form…

These shivers aren’t the emotional tingle you get when watching or reading something inspiring; rather, think of your body’s response to nails on a chalkboard.

It’s not just metal pots and pans.  The styrofoam containers that eggs come in?  That’s like kryptonite to me.  The noise it makes when opened…even just touching it, my body revolts even at the thought of it.

Sometimes, odd symptoms like these come and go; I truly never know what a new day might bring. 

But I’ve been living with and adapting to extreme sensitivities like these for many years now -- the #21 thing you might not now about (my) MS.



Monday, November 14, 2016

Hockey Player Bryan Bickell Diagnosed with MS

NHL player Bryan Bickell was recently diagnosed with MS and this quote spoke to me...and brought back memories:

"...since the 2015 playoffs, I've been struggling to understand what was going on with my body. Again during the past few weeks, it felt like something wasn't right."

It took many years before they figured out what was going on with me. The diagnosis wasn't easy to hear but it also brought with it a certain peace...an answer to so much confusion.

I hope Bryan has found a similar type of peace...and I wish him well in his quest to play hockey again.
 
Former Blackhawks forward Bryan Bickell diagnosed with multiple sclerosis


Friday, November 11, 2016

76 Things #20: Missing out on something special

When I was diagnosed, our first child, Vincent, was only 17 months old.

It was in May of 2008 and I learned I had MS at The Mayo Clinic, near the end of a week-long stay in Minnesota.

My parents took care of Vincent while my wife and I made the trip up to the Mayo.  While we were there – the week I was diagnosed with MS – Vincent finally learned to walk.

It was disappointing to miss that special moment (luckily, my parents were there to witness and chronicle it)….but, at the same time, it also highlighted to me how beautiful life is.

While we were away, our little son kept growing.  Even as I was getting poked and prodded in Minnesota, life went on.  And so would mine, too.

It was an important discovery - I wasn’t diagnosed with MS, my family was.

I had that realization early on when we – my wife and I – missed out on the first time our son was able to walk by himself.  Because of this, it’s been important to me to avoid having MS dictate to my family what direction we take next. 

Yes, sometimes it produces some sizable potholes or forces some unfortunate detours (missing our kiddos events, trips are planned around my energy level, various doctor’s appointments, etc.) - but I don't want MS to rule our hearts and mind – because no matter what impediment we are faced with, no dream should be out of reach.

Me and Vincent - about a month before I went to the Mayo Clinic



Thursday, November 3, 2016

Pleasure in the Tiny Moments

Thank you to The Mighty for publishing my latest story - please check it out and share with others!

Click here to read my story!


Sunday, October 2, 2016

Wednesday, September 14, 2016

What "Second Wind" Means to Me

Many thanks to The Mighty for posting another one of my stories!

Click here to read!









 #multiplesclerosis #fatigue #energy #lifewithms #secondwind

Friday, September 9, 2016

76 Things #19: The Face Slap

I miss having energy.

I really do.

It's embarrassing to admit, but even just taking a shower or shaving my face wears me out.

Life with MS requires a lot of rest.  It also means that I have to push myself...to do anything.

Read with the kiddos. A trip to the grocery store. Date night with the wife.

Coffee helps wake me up but there is only so much caffeine can do. I've tried "5 Hour Energy" but I was actually *more* tired after taking it!

There's also some prescribed medication that I take...and it's a big help, but unfortunately it only raises me to the level of "just able to function".

When I was working, often before big meetings, you'd find me in the washroom throwing cold water on my face. It was then, as I stood looking in the mirror...trying to find something - anything - to give me a boost...that I started slapping my face.

Yes, slapping my face.

Even at home I’d be doing it.  Many times, as my wife is driving our family somewhere…I'll be in the passenger's seat, lightly slapping my face. We both grin in amusement as I attempt to slap the MS out of me.

Does it work?

I like to think it gives me just enough spark to get through whatever I'm facing next....but I never really thought much about it - other than just a silly inside joke with my wife and I - until last month when the Olympics were on.

I can't remember the specific event, but it was a gold medal race....and as the runners lined up, the camera panned through the various competitors as the announcers provided each of their background and additional commentary.

And... <slap>.

Wait, did I just see that?

<slap>

Yes, it happened again.

Some of the racers were slapping themselves in the face!

My wife and I started laughing, saying they were "doing my move" but before we knew it, we started seeing it at a lot of different events throughout the games – Olympic champions were pumping themselves up by slapping their faces! 

I'm not sure if it made a difference in their performance but it was fun to see them going through the same preparations that I've tried....I might have MS, but I also apparently have the spirit and drive of an Olympian, too!

The Face Slap is the #19 thing you might not know about (my) MS.

Cate Campbell, one of the many Olympians that gave themselves a wake-up "slap" before the start of their race




Tuesday, September 6, 2016

Tuesday, August 16, 2016

My Facebook Live Video posted at "The Mighty"

Recently, I traveled out to California to attend one of my friend's weddings.  While I was there, I decided to stop by the offices of "The Mighty" and say hello to all the awesome people I've worked with while writing for their website the past few years.

I took part in my first ever podcast (and had a great time doing it!) and they also encouraged me to try "Facebook Live" to talk a little about my story.  I hope to post a link to my podcast soon...in the meantime, here is a link to my Facebook Live video.






Sunday, August 14, 2016

Treatment for Vertigo

Great read on a potentially new treatment for vertigo.  Haven't tried it out, yet, but the next time I get vertigo I hope it works!

http://denver.cbslocal.com/2012/04/23/colorado-doctor-finds-way-to-treat-common-vertigo/

Dr. Carol Foster instructs how to properly do the Half Somersault Maneuver (credit: CBS)

Thursday, August 11, 2016

My Quest for the MS Handshake Continues...

Recently, Viewers to Volunteers interviewed me about my post, "The MS Handshake".

I was honored and excited for them to bring awareness to my story.  I hope you check it out and let me know what you think!

https://www.viewerstovolunteers.com/articles/one-mans-quest-to-connect-with-others-with-multiple-sclerosis


Wednesday, August 3, 2016

Going for Gold

With the Olympics about to start, I thought it would be appropriate to touch upon exercise & MS...please enjoy my latest story!

http://themighty.com/2016/08/multiple-sclerosis-i-can-relate-to-the-drive-of-olympic-athletes/


Friday, July 15, 2016

Dog Days of MS Summer

Our kiddos are at an age that make family vacations a blast.  Tiring?  Oh yes.  Drama?  Of course.  Bruises, sweat and tears?  We got it all!

But any negatives are far outweighed by the magical moments we shared - I can't put a price on how truly special they were.

The drama is forgotten (or laughed about), bruises heal and tears dry...but the tiredness remains.

This is our first full week back from our trip to Minnesota and I'm still recovering from our wonderful journey.  The aching bones, tingles, shooting pain and blurred vision all occur a little more and longer than usual.  And my energy level is so depleted - the orange light is shining bright on "E" - but life goes on...and I struggle to keep up.

It's probably not all travel related.  It could be the blazing summer sun.  Heat is not kind to those of us with MS and its already reached the point of the summer where I'm dreaming of the cooler temperatures of October.

Also, my wife started a new job.  It's brought lots of excitement to her and our family but also slight changes in our family life.  New logistics to be worked out - they aren't major - but it also doesn't take much for my body to push back and remind me that I'm living with multiple sclerosis (even just a trip out to the mailbox causes a reminder!)

I view the upcoming weekend with excitement but also slight apprehension.  There are only six weekends left of summer to enjoy and I want to make each one count; but I'm also struggling to be the husband and father that I want to be.

It's the dog days of MS Summer and I can't help but dream of taking a permanent vacation far, far away from multiple sclerosis.










Monday, June 27, 2016

The MS Wink

Wouldn't it be great if those of us living with MS had a special handshake or another way of alerting each other that we share the same struggles against multiple sclerosis?

Please enjoy my latest musing, as published at The Mighty.

The MS Wink


Wednesday, June 1, 2016

Five Things

Please enjoy my latest writing, "Five Things", published by the National MS Society.

It wasn't easy to write about how multiple sclerosis impacts my mind in ways that can be embarrassing...but also humorous.

I hope you enjoy my story, share with others and most of all, understand MS just a little better.

 Five Things: MS Connection: About nine years ago, I was in a meeting at work and the executive in charge declared: “Five things. I can only remember five things at one time.”
He said it with a...



Friday, May 13, 2016

76 Things #18: Diagnosisversary™

Eight years ago today, I was diagnosed with multiple sclerosis.

It might seem silly, or perhaps a little crazy, but every May 13th my wife and I do something to commemorate this date. 

It’s not a celebration, more of a recognition.

Technically, my life didn’t change on May 13th, 2008; rather, the health problems that had been afflicting me 
for years were finally given a name.

Accepting the diagnosis of MS has not been an easy task.  There are moments of sadness and regret but those fleeting moments of darkness do not reflect who I am or going to be.

Living with multiple sclerosis is a 24-hour, 7 days a week battle.  It touches every aspect of my life:  taking part in my children’s activities, chatting with family or friends, taking a random trip to the grocery store or even just going downstairs at night to get a glass of water.  In every scenario, MS is there, lurking and eager to remind me of its presence.

So on May 13th, I acknowledge that although another year of living with MS has passed, my spirits remain high and I’m still smiling.

And that is the #18 thing you might not know about (my) MS.

Friday, April 29, 2016

76 Things #17: Bruised but not beaten

A hundred years ago, doctors would sometimes misdiagnose multiple sclerosis as chronic alcoholism.

Sounds a bit bizarre but in defense of early 20th century medical professionals, if you were to consider some of the common symptoms associated with MS – loss of balance, dizziness, impaired vision and slurred speech – they have a “had a few too many drinks” ring to them.

Loss of balance is a common occurrence in my day.  I’m very careful going up and down the stairs and have learned to try and avoid other situations that might lead to a fall.

But even with this extra caution, bumping and knocking into things is still a regular part of my life.  What results are random bruises on my arms, shoulders leg and feet. 

The pessimist might consider these markings a painful reminder of living with a chronic disease but I’d rather view them as moments captured in time – ahhh, the time I knocked into the dresser…oh, that was when I stumbled into the kitchen table – temporary tattoos that create a work of art illustrating that living with MS isn’t a sometime thing, it’s an all the time thing.

It can be embarrassing...even during the middle of the summer I'll be dressed in a long-sleeved shirt to cover up...as my MS-induced artwork might linger on my body for weeks, maybe even months. 

This unintentional body art is the #17 thing you might now know about (my) MS. 


Tuesday, April 19, 2016

76 Things #16: Cane and Able

I remember the moment I was diagnosed with MS.

Just three people in a room; the neurologist, my wife and me.  Angela was to my left and the doctor was sitting across from us.

He told me he'd answer any questions we had - no BSing - and just give it to us straight.

I don't remember the exact questions I asked but I do remember one of his replies was "What we don't know about MS far outweighs what we do know about it.  You could go the next 40 years, live a normal life with no relapses...or you could wake up tomorrow and be in a wheelchair."

It was honest...but it wasn't easy to hear.

Not many mornings go by when I don't think about his statement...as my I get out of bed and my feet touch the ground, I know it is something that is not to be taken for granted.

I'm blessed with mostly normal mobility still.  Do I stumble?  Of course.  I've had quite a few falls, too.  But I'm still able to get around and am thankful each time I go for a walk with my family or shoot some hoops with my children.

Standing...well, standing is not so easy.  I'd rather be walking than standing.  Last Wednesday, as bad luck would have it, events of the day required me to stand in place for about 5 minutes.

Five minutes.  300 seconds.  And I'm still paying for it today with agonizing pain in my left leg and foot. 

So, over the years I've become more accepting of my limits and bought a cane to help me get around - the #16 thing you might not know about my MS.

I use it sporadically - maybe I'm having a difficult day moving around or, in other situations, I know I'm going to need it (for example, when my family went on a trip to San Diego...which included a day walking around their zoo.)

I should use it more but sadly, my pride and stubbornness often prevail over logic. 


I fear my children will see it as a sign of weakness...or friends will pity my situation.  My competitive spirit refuses to let anyone think - for just one moment - that MS might be getting the better of me.

But, if I would have used my cane to aid me as I stood idle last Wednesday, I wouldn't be in so much pain still today, even as I type.

I don't know what tomorrow will bring, I learned that eight years ago when I was diagnosed at the Mayo Clinic.  What is still in my control is taking good care of my mind, body and spirit - and sometimes, my ego will need to take a backseat...or at least let my cane help keep it standing up.

My walking buddy



.






Wednesday, April 6, 2016

A Journey Back in Time

I grew up in Springfield, Virginia, a suburb of Washington, D.C. Our home was 15 miles away from the White House but I didn't spend my youth that concerned about politics, I was too consumed by sports.

I was a big fan of the local professional teams but not the collegiate ones.

This was way before satellite TV and the internet. I still remember when my family got cable - that was a monumental day! Imagine the irony now...we were actually excited to wait all day at home for the cable guy.

So, TV viewing options were limited and when it came to college hoops, Big East basketball was about all there was to watch. I'm not quite sure why that bothered me so much but it did and I held teams in those conferences responsible. I actively rooted against Georgetown, Syracuse, Seton Hall, Providence, etc.

But there is one Big East team I devloped a soft spot for - Villanova.  And it's because of my 7th grade "World of Math" teacher, Mrs. Ward.

You might be wondering what kind of class "World of Math" is...and honestly, you probably don't want to know. All Math, all the time. It was an elective my parents made me sign up for. When it came to "electives," the harder the better was my parents motto.

On my first day in Mrs. Ward's class I was filled with trepidation. Her hair was pulled back tight as she scribbled away on the board. Any noise she heard...a pencil dropping, somebody exhaling...she'd look back at us with a glare as she scanned the room.

But part of every glare of Mrs. Ward was the tiniest of smiles. It's almost as she knew she was playing the part of the tough math teacher....and she enjoyed it.

By the end of our first class, she was cracking jokes and before long I was cracking jokes back. Our sense of humors were similar so I think she enjoyed our give and take.

After one particular test that most of us didn't do well on, she offered extra credit to help with our grades. She didn't provide guidelines on what the extra credit needed to be, other than we had to talk in front of the class about Math. Or at least that is the way I remember it.

I'm not sure how the inspiration struck me but rather than talk about Math, I decided to write a song. Ok, borrow a song. "Open Arms," by Journey. Below is a condensed version of what I sang to the class:  

Sitting in World of Math Class 
I'm so Happy...to be learning
Loudly she teaches
She's so sincere 
How could we be so lucky? 
So now I come to you, Mrs. Ward
Nothing to hide, believe what I say
So here I am, Mrs. Ward
Hoping you'll see, what a "C" means to me, Mrs. Ward

When I finished, everyone in class sat silent, waiting to see what Mrs. Ward would do.

She didn't just laugh, she howled. She laughed so hard tears were coming out of her eyes.  I didn't earn any extra credit that day...but it was still worth it, seeing Mrs. Ward's gleeful reaction.

One day the topic of sports came up and she mentioned that her sister was married to Rollie Massimino, the coach of the Villanova Wildcats. I thought for sure she was messing with me, maybe as payback for my "Open Arms" tribute?

It was 1988; only 3 years after Villanova won the NCAA Championship, beating Georgetown in one of the greatest upsets in college basketball history. 

I was so confident she was just pulling my leg, I started making up my own stories in jest (I think I said the Washington Redskins coach, Joe Gibbs, was my uncle.)
 
Until one day, she handed me a Villanova game program, dated December 17th, 1988. She told me to turn to page 25. On that page, is a picture of Rollie Massimino with a signed note, "Mike, Best Wishes. I can't believe you doubted my sister-in-law"

I was stunned - Mrs. Ward certainly had the last laugh!

As I watched Villanova's thrilling championship victory on Monday - and the frequent shots of Rollie Massimino in the stands - I thought back to 7th grade and Mrs. Ward's class.

Luckily, I was able to find that Villanova game program that Ms. Ward gave me 28 years ago.

As I shared this trip back in time with my wife and children, the memories came flooding back.  World of Math?  I was only 11!  Spoofing  "Open Arms" by Journey in class - what was I thinking?  Excited to wait for the cable guy...on what planet was I living?

Flipping through the game program, I was surprised to see a picture of a much younger Jay Wright, Villanova's current coach.  In 1988, he was an Assistant on Rollie's staff. 

I hold on to mementos, a trait I inherited from my Mom.  So thank you Mom -  I know you are watching from above and I can hear you asking "What part of Italy is Rollie Massimino from?"

It's not just a game program, it's a snapshot in time filled with memories of who we were...and who we might become.



...I never doubted Mrs. Ward again!

Front Cover of Game Program

A flashback in time of Villanova's current coach, Jay Wright

Friday, March 25, 2016

The MS Grenade - My latest story, as published by the National Multiple Sclerosis Society

"Multiple sclerosis is not conducive to the sound bite world we currently live in and I struggle to find a concise way to incorporate it into my 30-second snapshot..."~ Michael Wentink, MS Connection Blog

Posted by National Multiple Sclerosis Society on Thursday, March 24, 2016

Wednesday, March 16, 2016

Biking for MS Down Under

Multiple sclerosis isn't an easy disease to understand (or pronounce.) 

In addition, most of my symptoms have been "invisible" so - if you know me - I look about the same as I always have.  And if you just met me, there is nothing about my appearance or manners that would suggest I'm living with MS.
 
There are more unknowns than what is known about multiple sclerosis and/or the future progression of my MS.  It can be an uneasy world to navigate...never quite sure what tomorrow will bring.

What I do know is that I'm blessed with a caring, wonderful family and incredibly supportive friends.

Friends that have joined me at the the Walk MS Event here in San Antonio or that have taken part in walk or bike events across the country....and even across the world!

My good friends Paul and Heather live in Australia and this year took part in the MS Melbourne Cycle, a 50k ride to raise money and awareness for MS (you can check out Heather's page here.)  It's Paul's 5th year riding and Heather's 1st.

I met Heather in college, almost 22 years ago.  And here we are now, almost 9k miles apart but connected by my multiple sclerosis.


In the spirit of MS Awareness Month, I wanted to say a special thank-you to my friends Down Under and to all of my friends and family for everything they've done since my diagnosis in 2008.









Saturday, March 12, 2016

House of Cards

If you watch "House of Cards", you are very familiar with the theme song.

What you might not know is the composer of that song, and the rest of the show's music has multiple sclerosis.

He does all of the work out of his own home in California. His name is Jeff Beal and I thought this would be a cool story to share during MS Awareness Month!

http://www.npr.org/2015/02/26/389045445/scoring-at-risk-how-the-house-of-cards-composer




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.



©2008-2017 Michael J. Wentink, Jr., All Rights Reserved.