Friday, December 13, 2013

76 Things #3

It's been an exciting few weeks....Thanksgiving, my wife's birthday and now my treatment week so outside of the festivities (and then going to get my IVIG infusion on Monday and Tuesday,) its been hard to find the energy for most things, including writing.

But starting to feel a little better now, so the #3 thing you may or may not know about (my) MS:

Originally, doctors thought I had Crohn's disease.  I covered this in a previous post here but thought this was worth mentioning again because:
  • It's been almost five years since I wrote that article about the long and winding road to learning I had multiple sclerosis.
  • My journey of confusion, uncertainty and even a wrong diagnosis is actually a common theme woven into the stories of many others with MS, too.
There was a trip to the emergency room (while our friends, the Allards were visiting, no less.) and was admitted to the hospital for a week as they tried to figure out what was ailing me.

If there is a GI procedure out there, I had it done.  For a few months, I was even taking a daily medication, Pentasa.  Eight pills a day.  Eight!!  And these were healthy sized pills; my wife and I used to call them my "horse pills".

In the Spring of 2008, after I started having vision problems, my GI doctor agreed a 2nd opinion was necessary and reached out to The Mayo Clinic and that is where I was first diagnosed with multiple sclerosis.









Wednesday, November 27, 2013

76 Things: #2

As of today, my Hyundai Genesis (which I bought new, in early 2009) - courtesy of (my) MS -  has been driven only 16,591 miles.

Comparably, according to the U.S. Department of Transprotation, the average *annual* miles another male, in my age range, would put on their car is 18,858 miles -- 14% higher than I've driven my Genesis in almost five years!

There are many contributing factors as to why I've driven so little, most of which will be covered in future "Things."

I'm blessed to have such a patient and wonderful wife, who doesn't mind being the primary driver in our family.  This has not been an easy transition for me. Back in the day, I took great pride in being the "driver"; whether it was a 1/2 day trek or just a trip to the local grocery store.

I'm not sure how she does it, especially since she doesn't have XM radio.  In fact, I don't know how anyone survives the steady stream of commercials and repetitive play list that hasn't been updated since 1993 (and not the fun kind of repetition, i.e. The Proclaimers from "How I Met Your Mother).

Enjoy the link (in bold, above) and Happy Thanksgiving!!






Monday, November 25, 2013

76 Things: #1


in no particular order
Over the past couple of years…and particularly within the last few months…I’ve become hypersensitive to certain sounds and sensations.  Some examples:
ü  Metal on metal
ü  Chewing certain foods
ü  Textures of fabric on my clothes, even sheets
These sounds and sensations send uncomfortable, almost paralyzing, shivers up and down my body.  Something as innocent as my children’s spoon hitting their bowl as they eat cereal is like a punch in the stomach…I have to grit my teeth just to clean pots and pans…and I’ve lost the appetite for eating things like sugar snap peas, sliced bell peppers or a fresh pickle spears (all of which I used to love).
As my neurologist explained, my brain isn’t communicating correctly with the rest of my body so it’s amplifying and confusing certain senses.  Will this ever go away?  Get better…or worse?  As with most things MS related, he couldn’t really say.
Because of these noise sensitivities, I hadn’t been to the dentist in a long time and I’m paying the price now.  I had a root canal last week and go in this morning for additional fillings. 
I’ve been walking around with agonizing pain in my teeth for weeks so I wasn’t surprised.  Cold drinks were a no-no, even laughing caused discomfort and there was a constant throbbing.
Even though I knew what had to be done, I couldn’t bear the thought of sitting in a chair, hearing those noises….knowing how difficult it would be to listen to the clinking and other sounds of a dental visit. 
I told my wife I probably would need to be heavily sedated or knocked out just for a routine cleaning. We researched what options are available and found a potential solution – laughing gas.  Also called nitrous oxide, this form of sedation dentistry was a much welcomed aid for my cleaning and root canal last week.
For now, adapting to my hypersensitivity of everyday sounds and sensations...my dogs nails on the hardwood floors, my wife innocently eating popcorn, my daughter biting her spoon...these are all examples that (my) MS is like a distinctive box of chocolates, I never know what I'm going to get. 
 

My Momma never mentioned anything about MS being like a box of chocolates...

 



Friday, November 22, 2013

76 Things You Didn't Know About (my) MS


As I continue to share about my life with multiple sclerosis (including updates on my health), I wanted to create another avenue to communicate on a more consistent basis.
Over the past few years, I’ve learned that I have a *very* difficult time cranking out short blurbs or updates.  Because the impacts of MS are so unique, I believe there is tremendous value in providing a story where anyone reading it, can relate to the subject matter.   
I liken this situation to the standard post-game interview (think Super Bowl or World Series).  I always laugh when I hear a sideline reporter ask, “What are you feeling right now?” to a coach or player that just won.  Do you really want to know how they feel?  They want to be celebrating with their friends, coaches, teammates…they want to be sending texts, popping champagne and basking in the glory of their success.  And the last thing they want to be doing is putting all that on pause to fulfill an obligation to the TV network televising their game.
When I try to shorten or change my writing style, I often feel like one of those athletes/coaches, giving the canned response of….”give the other team credit”…”I owe it all to my teammates”….”we’ve worked so hard” and it just doesn’t feel right.
I’m not writing for number of web clicks, or getting paid and I’m pretty sure no Pulitzer Prize is in my future.  I do this to raise awareness for MS….so at least one person understands the disease a little better.  And if I believe what I’m producing doesn’t feel like it is succeeding in that goal, then I’m not posting it (let alone finishing).
In “76 Things That You Didn’t Know About (My) MS?”, I will provide short glimpses into something that you didn’t know about (my) MS.  To borrow from both Arsenio Hall and Johnny Carson (a historic moment in the annals of literature), I’ll be aiming for “Things That Make You Go Hmmm…I Did Not Know That (About MS)”.

Hmmmm...


 
An important point.  Use of the parenthetical (my) is intentional.  The symptoms of Multiple Sclerosis are as wide-ranging as the degree in which they might disable you.  The moment I was diagnosed at The Mayo Clinic, the neurologist told me that I could wake up the next day and be mostly symptom-free well into the future…or not, and instead wake up that next morning and need a wheelchair.
Many similarities certainly exist for those of us with MS but the reality remains that no two cases are the same and none follow a projected course.  That’s an important point for me to stress.  As I write about my condition, I’m fully aware how blessed I am compared to many others with this disease.  I also know there are many whose MS is not as aggressive as mine and may never impact them to the degree that it does to me.  But this isn’t a competition….to not have control over your own body, to have something interfering with your brain’s communication…and to not be entirely sure what your future will hold because of this disease (and nobody knows how or why you got it) – it sucks for anyone, period. 
I originally thought “101 reasons” because that seems to be the standard reference but 101 has no significance to me, so it rings hollow.  Why 76?  Well, as I remind my wife every 4.2 days, I was a bicentennial baby….in fact, I was supposed to be born in 1977 but there was no way I was missing out on entering this world on the 200th anniversary of America.  So, 5 days before Christmas in the year 1976, at 11:57 a.m., I greeted this world with a smile, Santa hat and Uncle Sam costume.  Ok, maybe not the final one but I do take great pride in that birth year, so 76 it is.
I’ll start this up on November 25th, and share the 76 things you don’t know about (my) MS on a very regular basis.  I have a dentist appointment first thing that Monday…and as it works, the 1st thing you might not know about my MS has to do with just that, going to the dentist.
I’ll also continue to write longer stories, too (and have nearly completed my post about some of the setbacks I had this summer). 
Please share my page with others that you think might be interested in learning about MS.  Also, if you have any ideas of your own, or questions about (my) MS, please leave me a comment here (or shoot me an email), I’d love to hear from you.

Thursday, November 7, 2013

My Own Penske File


Google “multiple sclerosis” and you are provided almost 41 millions results in .22 seconds.  Further refine your search to “multiple sclerosis symptoms” and you’ll now have about 24 million links to browse – at your leisure  - in a slightly longer response time of .23 seconds.

I’d wager that most of these results include four common themes:
ü  It’s an auto-immune disease.

ü  Over 2.3 million people worldwide are afflicted by multiple sclerosis.

ü  The medical community is generally stumped as to how or why over 2 million people woke up one day and learned they had MS.

ü   A rather extensive list of ailments that are associated with MS, ranging from fatigue to paralysis.

It’s within that list of symptoms that I find one of the many reasons for writing…for telling my story. 

THIS IS LIFE.  THIS IS LIFE ON MS.

I believe that what’s lost in these medical explanations is the human side of this disease.  You can click on these millions of results but at some point, you’d become desensitized to life with MS.  How many different ways can you explain numbness, tingling, pain or impaired vision?  But no Wikipedia entry or medical journal can do justice to explaining what it’s like living each day with MS.

What you won't find in those google results -- 
  • My freezer has an even ratio of ice packs to frozen vegetables.
  • Shall it ever be required; I own enough pairs of socks to outfit an entire NFL roster.
  • Often, unsure if the latest ailment is a new MS symptom or not, the Wentink home can resemble a lab, with me playing the role of mad scientist (sans the white jacket).
  • My fear of heights has been matched by a fear of finding myself in a situation/conversation that requires standing.  Yes, I really do mean that. 
  • “Can you wake Daddy up to let him know dinner is ready?” echoes through our walls a lot more than I’d like.
  • If I have an untimely response to one of my wife’s texts, she’s worried I fell down the stairs.  Again.  
  • A needle goes into my body.  Every day. 
  • Lights are constantly turned off not to save on power bills but to alleviate the discomfort it causes my eyes.

“STRATEGERY”

In corporate speak, I’d classify the above as “tactical” challenges…but for me, the larger “strategic” issue that weighs on me is the reality that someday in the near future I will disclose my illness to my six year old son. 

In my dream world, this conversation would never happen.  Instead, on my tombstone, it would read “Here lies Michael Wentink.  Wait, he had MS?”…but I have to balance this fantasy with the ever evolving and oh so observant mind of my son.

No, I don’t have the pressure of a big presentation nor do I have to work all weekend on the Penske file but I’d welcome back those worries over wondering if my son will still view me in the same rock star, super hero status that he currently does, after learning about my MS.  Maybe I can Google the answer to that?

George, "working" hard on the Penske file...

 

Tuesday, October 29, 2013

Lost on the Isle of MS

MS can be a lonely disease.  With so many invisible symptoms, often it feels like you are on a remote island.  Not a nice one, of course.  Thankfully, no indigenous headhunters exist in this dominion but there are plenty of figurative bear traps to avoid, never knowing if that next step will produce throbbing pain, a stumble or spill.

Visibility can never be taken for granted.  A fog doesn’t roll in; it appears suddenly, impeding my vision for a few minutes, the entire day or much longer.  There is no weather forecast or crystal balls to predict my health for the day and there is little knowledge among the local medicine men as to why my vision comes and goes.
Even my mobility might suddenly be impaired; numbness in my extremities that limit my movement.  Loss of balance is frequent; often I awake in the morning with bumps or bruises, unable to remember how I got them.  Chronic battles with tingling or other curious sensations is common and sometimes other maladies might arise, perhaps one foot dragging behind the other, or the sense that everything around me is spinning.
It’s a rough terrain, leading to constant exhaustion from the moment the sun rises to the final moments before I drift off to sleep.  The landscape is not quite quicksand, but it’s close.
With so many other symptoms of the “invisible” variety, one might even think there is an enchanting quality to this island.  But the man behind the curtain isn’t an illusionist, entertaining the audience by pulling a rabbit out of his hat; instead, it’s more akin to the “Smoke Monster" from Lost.  And like in the show, this mysterious creature’s origin and complete impact is never really understood or explained…but you still know to tread lightly when it appears, as it wreaks havoc for all in its path.
Island folklore suggests the best cure is to ingest or be injected with mystical elixirs, containing side effects that outnumber ingredients. These potions might restore mobility or improve vision, but I never feel quite the same, as the damage from the previous setbacks always linger.
This summer I spent a lot of time "lost" on this island and even mapped out a few new areas that I’ll be sharing soon. 
Stay tuned for next week's episode... 


Similarites exist to the island of "Lost" (Jäger keeping me company)
 
 
 

Monday, October 21, 2013

Wake Me Up When September Ends

Happy Autumn season to all...

My sincerest apologies for no updates over the summer.  From a health perspective, it wasn't my finest summer.  I was never quite sure if I had made it through my latest relapse or if there was still more surprises in store for me.

I'm hopeful that things are starting to get back to normal.  The steroids worked, my walking is greatly improved (although it is with the aid of a cane from time to time) and a lot of other new symptoms I was experiencing (mostly sensation) have subsided...or I've just had to get used to them by now.

More on that later...to be honest, I've started many entries over the past few months but I consistently was unable to tell the story that I wanted...mostly, because I didn't know where my current health was going.  Was my foot drop going to become permanent?  Were the vision issues I experiencing temporary impediments or was it going to be the new normal?

Silly as it sounds but I didn't want to jinx what was going to happen next.  I know, its ridiculous that I think I can have that kind of power over my disease but what can I say, MS can do a lot of things but it can't (and won't) kill my spirit.  I'll continue believing that I can "will" any new health issues away -- if nothing else, it's been a true education in just how competitive I am.

It's been a tough few months and bad health or not, I miss writing and it's time.  I might not know the ending but that doesn't matter as much as the road that I will be traveling on.

 



Sunday, June 9, 2013

The Fog of 'Roids

Looking forward to providing more of an update in a few days...honestly, I've spent the better part of this weekend in bed. 

It was a tough adjustment for my body after three consecutive days of Solu-Medrol.  Even as I type this, my eyes are heavy and yawns frequently interrupt my typing.

But here is the great news -- I believe the steroids worked and my right foot has come back to life.  It's not perfect, my balance is a little more erratic than normal.  I'm not sure if that's because I was overcompensating for the past week while adapting to my right foot dragging or if it's just a part of my regular MS (balance/coordination comes and goes, as it pleases). 

I've hesitated posting anything, yet, because - well, I have been sleeping most of the weekend - and I didn't want to proclaim any success until after a few days post-steroids.
 
I'll follow-up more this weekend...my foot drop was accompanied by other new symptoms that, although don't really impact my mobility, are just as troubling.  I'm hopeful the Solu-Medrol worked some of those issues out, too.  Also, on Saturday I had pretty tough fall - I'm ok, thankfully there was only bumps and bruises but it was a painful reminder that with MS, there is no such thing as a sure step.

Happy Sunday to all!






Monday, June 3, 2013

Walk This Way

I heard once that way back before MRIs and other tools of modern medicine, that patients suffering from multiple sclerosis would actually be misdiagnosed as having chronic alcoholism.

I can’t verify the accuracy of this but it wouldn’t surprise me if it were true. The stumbling around, impaired vision, slurred speech, etc. – are all common symptoms of MS…but also apt descriptions of a person, MS or not, after having a few too many drinks.

A CARD CARRYING MEMBER


I carry a laminated card in my wallet that affirms I have MS - this doesn’t get me discounts at the movies nor signify a special club us MSers are part of, secret handshake and all (although that would be pretty cool if we did have one) - no, I carry it with me wherever I go in case of medical emergency and yes, in the off-chance that one of San Antonio’s finest mistakes my own staggering around as something that it’s not. Don’t take just my word for it, there’s currently a group on Facebook (with over 10k members) called “We’re Not Drunk, We Have MS!”

I mention this as a backdrop for the latest challenge multiple sclerosis has thrown our way. Last week, around the time of my monthly IVIG treatment, I started having greater difficulty moving around. Right around Memorial Day my right foot decided it no longer wanted to join my left in helping me walk around. I’m still mobile, but it’s not a pretty sight. My right foot drags behind as I attempt to make my way around the house and walking up or down the stairs has become part aerobic workout and part roller coaster ride.

It’s almost as if my right foot has decided to retire early and left the rest of my body to fend for itself. I challenge myself to walk normally across our living room, laser-focused on raising my right foot as I walk, hoping to outsmart my disease – “I’ll just will it away”, I think to myself. Instead, I stumble more and by the time I make it across the room I’m exhausted.

THROUGH RAIN, SLEET AND SNOW...BUT NOT LESIONS


To be clinical, I believe what I’m facing is called foot drop – or at least I have some form of it. In addition to walking around, getting dressed has become a greater struggle…even just crossing my right leg is no longer a simple task.

But as I walked into my son’s school on Friday morning, to watch him and his classmates perform a poetry reading, what to call my latest ailment was the last thing on my mind. So was worrying whether this new exacerbation was my new normal or just a temporary flare-up – those things are mostly out of my control. All that was on my mind is what my son, his friends, their parents, his teachers and principal would think seeing me stumbling around. I’m supposed to be my son’s super hero, not an object of embarrassment. I made my way across the cafeteria, hundreds of kids eating their lunches, my right foot dragging behind just hoping and praying that I don’t fall.

I know I shouldn’t think this way and trust me; I challenge myself to be a better person. How silly that I’m less concerned about what my disease might be taking away from me and more worried about how I’ll be perceived by my children, friends yes – even strangers. I want to say; no I’m not drunk and certainly not lazy. There’s no amazing story about how I rescued ten puppies from a burning building, balanced our country’s budget and turned Super Bowl Monday into a National Holiday while spraining my foot and causing a permanent limp in the process. I really wish there was. Instead, for some reason, beyond the medical community’s understanding, I get lesions on my brain and spinal cord which disrupt the communication from my brain to the rest of my body. Basically, the directions to my right foot get lost in the mail.

THE CILANTRO GENERATION


With MS, nothing can be taken for granted, not even something as minor as crossing my legs. Here today, perhaps gone tomorrow. I’m hopeful this is just a short-term challenge and one morning in the very near future I’ll wake up and my “foot drop” will magically disappear. I’ve been using a cane this week to help me around the house and I’ll start planning for the additional time that will be needed to get dressed.

Chronic alcoholism might have seen like a reasonable explanation in 1913; please don’t mistake my tone as dismissive to the previous era of medicine. I’m sure our future generation in the year 2113 will enjoy having a laugh about how we lived in the year 2013. Our hair styles and fashion choices will amuse, the inability of our phones to transport us around the world will confuse, the overuse of cilantro in cooking will disgust, under-utilization of hoisin sauce will disappoint and the general reluctance to celebrate birthday “weeks” will spark much discussion of our stoic generation.

Most of all, I hope my future grandson or great-grandson looks back on our time and marvels (with wonder and sadness) over the various diseases and disorders that plagued our time. My dream is that multiple sclerosis is a distant memory, an illness from a far-away time, when his ancestors walked uphill both ways to school, drove cars with no capacity to fly and actually went to work or school the day after the Super Bowl.

Tuesday, May 28, 2013

Comments/Musings

My apologies to those that have left comments over the past few months, I did not see them until now and feel bad for not responding, especially for those that asked questions. I'll be changing the settings of this blog so, in the future, I'll be notified when a comment is left.

Many thanks to all for your kind thoughts and please if you have any questions - keep them coming - I'm more than happy to answer!

I added a "musing" this past weekend and intend to continue daily/weekly musings (in addition to my contributions to the National MS Society Blog, published monthly), to help shine a light on my life with multiple sclerosis.

It's a disease that affects over 2 million people worldwide, of all ages, race, gender or creed and each one of us has our own unique story. I thank you for following me on my journey and hope you enjoy your time and most of all, continue to learn and expand your understanding of MS.

Happy Tuesday!

Sunday, May 26, 2013

Mike's MS Musings

Holiday weekend for thee, next treatment coming up for me.

That's the easy way out...feeling sorry for myself that first thing Tuesday morning (since Monday is a holiday) I'll be at the infusion center to start another two days of IVIG. My bones are cold and achy, a sign that my body is expecting its refill. I struggle to find the energy to play with the kids...or even shave. A loud noise here or a minor stressful situation there causes my vision to flicker on and off. Constant nausea. There is no position that is comfortable, pain relief medicine is useless and hot coffee provides no bump to my energy (although it does help a little, warming my body).

But it's Memorial Day weekend. A weekend to honor those that have fallen protecting our nation. Makes my aches and pains seem a little silly, no? But whether it is Memorial Day, Labor Day or any holiday weekend, the dark cloud of MS is always lingering nearby.

In school, career or even baking, I've always liked challenges. Why waste my time baking simple brownies when I can make sticky toffee pudding instead? So instead of wallowing in self-pity (which I admit, has its allure), I prefer to view all of this for what it is - a challenge. MS is taunting me to not have a Clark Griswoldian holiday weekend. To that, I say - bring it on.

Wednesday, March 13, 2013

The MS App (Director's Cut)

Please note - this entry was originally published by the National MS Society Blog at http://blog.nationalmssociety.org/ - above is the "extended" version :-)

Oscar Wilde believed that life imitates art far more than art imitates life.  My own personal thoughts on this statement are muddled, at best.   Quite often, I find myself relating passing predicaments back to one of my favorite television shows, “Seinfeld”.  Taking too long to order your food?  No soup for you!  Playing a trivia game?  The Moops!  Feeling sluggish and tired during the summer?  It’s the summer of George!  Others may find similar ironic connections to their own favorite movie or book – mine are usually covered by terms like “Bizarro World”, “Festivus” and “Vandelay Industries”.
Although I see reflections of Seinfeldian art in my daily life, these comedic episodes were written and usually based on other individuals own true stories, creating a chicken vs. egg argument over which came first – life vs. art - and I  leave this philosophic debate to more fervent minds.  My focus…my wonder, is that maybe if life did imitate art, in this case, a video game from almost thirty years ago, then perhaps the confusing world of MS fatigue might be a little better understood.  

LIFE FORCE


Growing up in the 80s, family trips to the local shopping mall usually involved my brothers and I heading to the arcade and playing video games until our parents gave us the sign that it was time to go. For this ten year old, it was sweet music to my ears as the fresh quarters rattled around in the coin dispenser, the converted dollar bills courtesy of Mom and Dad.  My time and quarters were spent playing mostly sports-themed games, as not much else really piqued my interest.
After I spent my last quarter, I’d wander over to the game “Gauntlet,” not to play, but to watch for a few minutes until it was officially time to leave. “Gauntlet” was very different from “Tecmo Bowl” and the other sports games I usually gravitated toward; rather than trying to beat another team by scoring more points, it was about pure survival.

My eyes were always drawn to each player’s score, highlighted in big red numbers, usually rapidly descending as players struggled to complete the various levels. There was one memorable phrase I remember from the game: “Your life force is running out!” It was uttered by the computer narrator whenever a player’s health had decreased to a threatening level. As I watched, I’d try to predict in my head at what precise moment the computer would start providing this ominous and repetitive alert.

SO TIRED OF BEING TIRED


For those with MS, energy is a prized resource, available only in limited quantities. Read any medical definition of multiple sclerosis and “fatigue” will be listed as one of the more common symptoms. The quotes are an intentional and caustic nod to this word; personally, I find the term “fatigue” lacking in accuracy and descriptive affect on the realities of living with MS.
Webster’s defines fatigue as “weariness or exhaustion from labor, exertion or stress,” but with MS no exertion is required to enter a state of exhaustion; rather, weariness is constant - a baseline. Normal, daily routines, like showering and shaving, are obstacles to be planned for and managed, all in the name of preserving my energy. Even on my best days, I regularly feel the dark cloud of exhaustion hovering, tempting me to surrender and retreat to a dark and quiet spot, isolated from others.

One moment I’m reading a story to my children or enjoying a dinner with my wife … then suddenly, my energy has vanished, my bones feel cold and achy, my mind is hazy, unable to think clearly. Often, I worry that my children think I’m ignoring them, my friends and family feel I’m disinterested, or new acquaintances wonder why I seem so tired and unengaged.

MY OWN GAUNTLET


But what if I had my own colored indicator, floating above my head, clearly identifying my energy level? My “life force” would blink in big numbers, and a friendly alert would go off when a low level was reached, notifying me and others that my energy was tapped out or, as with most days, surviving on fumes. 
With respect to Seinfeld, this would be quite the Bizarro world and understandably, some might hesitate to broadcast their personal battle, a scarlet MS for all to see. But it would also be a portal for seeing through the MS looking glass, easing confusion and misunderstanding, highlighting our strength in battle and a wonderful way to educate ourselves and others on the moment-by-moment struggle we face against our own bodies.  Maybe it’s a show nobody would want to see, but they would all be based on true stories -- art in its purest form.
 
 
 

Monday, January 28, 2013

Happy 2013

Thank you for visiting my page!

If this is your first visit, I started writing in November 2008, about 6 months after I was diagnosed with multiple sclerosis - here is my first entry.

I'll be updating frequently throughout 2013 and I invite you to follow along.  The past few months I've been a contributor to the National MS Society's blog - you can check out those posts here and here.

Feel free to leave comments or send along to others...thanks again for your interest! 




 

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