Tuesday, June 30, 2015

76 Things: #13 - MS is a pain in the...

The twisties.  Lightning strikes.  The chronic.  Electric shock.  Boiling blood.  Open wounds.  Needle point.
Shift a few words around, or change a verb tense and the array of words above might be mistaken for names of heavy metal bands.

They are also some of the slangy descriptors I use with my wife to explain the various pains I experience from living with MS.

·       Twisties:  It is not the Chubby Checker song; the origin of the name is from the twist ties used to close up bags.  When I’m experiencing this, it’s as if somebody keeps twisting the tendons in my legs and arms as if they were twist ties.

·       Lightning strikes:  This intense pain primarily occurs around my head and face, sometimes in my abdominal area and occasionally in my hands and feet.

·       The chronic:  Continuous (thus the name chronic) soreness and general achiness, mostly in my legs and feet, particularly my left one.  Because of this, I’m usually unable to stand, without some type of aid (for example, my cane or leaning on my wife) for an extended period of time.  Busy days and weekends lead to even worse bouts of The Chronic and I’ll vary between icing the afflicted areas to enrolling my helpful wife as my own personal masseuse.

·       Electric shock:  Different from lightning, it is what it says…my body, usually my hands and feet, experience the sensation as if I just accidently stuck my finger or toe in an electric socket.

·       Boiling blood:  Sounds more ominous than it is; it’s a burning sensation, but to the point where it truly feels like my core temperature is being brought to a boil on stovetop.  This mostly occurs in my arms and legs.

·       Open wounds:  This is more about the discomfort than the pain.  Certain areas on my body (usually my arms, shoulders and legs), will develop a very raw sensation…the afflicted areas are very tender to the touch and remind me of when I was younger and used to skin my knees and elbows  while playing sports.

·       Needle point:  I actually just experienced this while writing right now.  It’s rather self-explanatory…I’ll have sudden and sharp pains, usually in my toes, but sometimes in my hands, that feel like somebody is repeatedly sticking a needle in my flesh.
I don’t like bringing attention to myself and I’m incredibly reluctant to dampen any moment with a complaint or reference to my ongoing battle with multiple sclerosis.  I much prefer the more subtle “grin and bear it” approach.

That method is nice in theory but the reality is I’m a husband, father of two, son, brother and friend.  And although there might appear to be a short-term benefit by keeping the struggles with pain I have to myself, ultimately, it doesn’t make me a stronger person; instead, it creates distance with those that matter most.

As a result, I’ve opened up more about the kinds of random pain I have on a daily basis.  But it has been a difficult process.  Even writing this has been a struggle, I feel like it comes across as equal parts weakness and Debbie Downer.

Maybe it’s because I’m a male, the man of my family, so I feel it’s almost my obligation to accept the pain and move on?  Blurred vision, problems walking around…well, that seems much more grandiose, so it’s much easier for me to talk about it.

But the pain …whether I’m getting dressed in the morning, reading a book, talking with my family or watching the Nationals win another game en route to their second straight division title…the pain is there.  And it never really goes away.
 Womp, womp..

Friday, June 19, 2015

Sonnet IVIG

Dear weekend,

How do I love thee?  Let me count the ways...

I love thee excitedly today is my daughter's 6th birthday
I love thee that Sunday is Father's Day
My soul is warmed, knowing that the 21st is also the first (official) day of summer
I love thee graciously that although it is the summer in Texas, it's still not blazing hot....yet
I love thee hopefully the Nats sweep the Pirates this weekend and return to 1st place
I love thee tenderly, it's a weekend and time to hang out with the family
I love thee fondly, for our community pool is just a few houses away down our street

But when then do I feel a dark cloud hovering nearby?

Ah yes, because on Monday the 22nd, another IVIG treatment will commence
Feelings of anguish arise
For during this week, I'm not all here
My children know I will be tired Daddy
My wife knows she must taken on even more than she already does
and I fear that the center cannot hold

So I must find the strength to put aside my sullenness and live each day this weekend fully
Carpe diem is my maxim and leave my worries about Monday for another day

Friday, June 12, 2015

76 Things: #12 - O Summer! My Summer!

Summer and MS
Sadly they go together
Like oil and water
-MJW, "My Book of MS Haikus"

Another Texas summer is finally upon us...and yet my MS is already dreaming of October.
I love the sun.  The blue skies.  And our kiddos would probably live in the pool, if we let them.
Unfortunately, multiple sclerosis isn’t such a big fan of hot weather.  Just a short trip to the mailbox will leave me dizzy and feeling faint.

Blurred vision – check.  Difficulty walking straight?  Oh yes.  And my daily bouts with chronic fatigue become even more difficult.
I’m not alone in this phenomenon; you can read more about the impact of heat and high humidity on multiple sclerosis here.

So how do I get through the next 3 months?  Here are a few ways…

  • Hibernation:  It’s rare that I play with the kiddos outside.  Family walks are pretty much out unless it is very early in the morning. Going to the pool is a treat but still needs to be approached with caution. 
  • Picking our spots:  During the week, the children are at camp during the day so there is less strategizing required.  But on the weekends, we have to be smart about the choices we make.  Two events in one day (especially if they are outdoors) are pretty much a no-no.  We also usually try to avoid back-to-back night outings.    
  • Stay cool:  Often, when I’m outside, I’ll wear a ice pack wrap around my neck.  And no matter where I am, I always make sure that cold fluids to drink are nearby.
  • Accept help:  I’m much more likely to use the handicap placard during the summer.  And, whether we are parked close or not, you are likely to see my arms around my wife’s shoulder as she helps steady my gait as I walk to the door.

I wish there was a secret sauce to surviving summertime and multiple sclerosis.  I envy those that are out running in the neighborhood, getting their vitamin D and exercise for the day.  I feel guilty that my wife has to shoulder so much more of our household responsibilities.  And I yearn for the fall, when I can return to being a much more regular part of my family, friends and community’s life.



Saturday, June 6, 2015

My latest story, published by the National MS Society

Are you in need of a good chuckle? We love Michael's take on the dreaded MRI!

Posted by National Multiple Sclerosis Society on Thursday, June 4, 2015

Thursday, June 4, 2015

When did you find out...?

A common question I've been asked is, "When did you find out you had MS"?

There's a short answer - May 13th, 2008 at The Mayo Clinic in Rochester, Minnesota.

But the longer - and more accurate answer - is considerably more detailed...and usually isn't suitable for a short, casual conversation.

A team of various doctors, eventually neurologists, far away from our home in Texas, finally solved my medical puzzle in May 2008 but the journey to diagnosis saw many twists and turns that date back at least a decade. So, when did I really "get MS"? That's a story all on its own...


How about yourself? 

If you are checking out this blog and have MS, how long was your journey to diagnosis?  Quick?  Over a few or many years?  Did one specific event happen that led to it or a variety of factors?

Would love to hear from you, please feel free to comment below!!

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