Wednesday, May 23, 2012

I Once Knew This Guy...

     I once knew a guy…this guy was really something. He could do anything. Not that he was super smart, but rather super resourceful.  There wasn’t’ anything he couldn’t fix or do, for that matter.  This guy would jump into anything, roll up his sleeves, fix a brick retaining wall, plant six or seven pine trees in half of a day, wash a car, wax it, slick the tires and get a workout in before most people were out of bed in the morning.
     This guy I speak of was strong.  Physically he could hurl items around that really shouldn’t be.  Not that he was like a superhero or something, but rather his inner will afforded him super strength physically.  This guy would go grocery shopping and when he would bring the groceries in to the house he would carry six or seven of the bags on each arm, you know the cheap plastic ones with the loops at the top.  Physical strength and the ability to be productive is what drove this guy.  He had kind of a nervous energy, where he would just pick projects to mess with to occupy that energy.
     This guy I knew loved a challenge, especially with regards to the outdoors.  He took up hunting and loved to fish, and got the most enormous thrill out of seeing his kids fighting a four pound bass with both a grimace and unyielding excitement as to what could possibly be under that water.  It was just a neighborhood pond.  An old lady that lived on the hill above the pond was elated to let this guy I knew take his kids fishing.
     So this guy, this strong , resourceful, nervous energy guy I knew, found himself in quite a battle.  Slowly but surely that physical strength and desire to take new projects on found himself in a battle with complete and utter randomness.  This guy was diagnosed with some crazy off the wall unheard of illness called Multiple Sclerosis(MS)  This guy had no idea what to expect, and didn’t know a damn thing about this new thing he was afflicted with.  As (un)luck would have it this guy I knew would lose his walking, and a ton of that physical strength, and quickly he watched that nervous energy productivity basically take a back seat to the couch.  Thank God for one thing for sure, this guy I knew and know still has his resourcefulness, and some of that physical strength, because he lives alone and being alone is tough enough; now add the horror of being alone and sick; ugly combination.
     So this guy I knew turns out to be a guy I have known all too well.  Sure deep inside he is the same guy, but from the destruction of his illness, and its rapid and progressive course, he really isn’t the guy I knew, but this guy I now know.  The illness is not his only battle, warding off loneliness, personal issue, boredom, and the constant coping with pain and discomfort are also major battles.  This guy I knew…He is not the guy I know, but rather this new guy, that I would never have ever dreamt I would have known, and somebody that I used to know, a body, a physicality that has cut me out, double crossed me, and left me in a strange new world.

Thursday, May 3, 2012

Why can't you relax?

     I have found there is one thing that trumps the extreme torture of dealing with MS, trying to find medical symptomatic help in dealing with the torture of MS. Got strep throat? Broken bone? Open wound?  Need a tooth pulled? No problem, a simple emergency clinic or dentist can fix it, and in time you will heal. Got spasticity and muscle contractions 24/7 as a result of axon damage that will not respond to medicine prescribed by your neuro? Stand in line, deal with the pain, you're fucked .  Or I am anyway.
     If one is dealing with MS he or she will find that there are treatment protocols that most neuro's use.  Sure there are different disease modifying camps, Tysabri guys, Rebiff or Copaxone guys, several others now as well,  but in terms of symptom treatment it's relatively the same.  A course of solumedrol, or maybe maintenance infusions, baclofen or zanaflex for spasticity, gabapentin and Lyrica for nerve pain, sure there are others Valium, Clonazepam, botox injections,  but for The Greek not a damn thing works. Worse off they all share a common side effect. FATIGUE.  Who is the genius that thought adding fatigue to crippling fatigue was a good idea should be water boarded.  I've heard it all, "it's the mechanism of the medication," BS we can put a man on the moon, many years before we ever thought possible, but today we can't get a medicine that does not zombify me.
     So back to my nemesis, and the major contributing factor to my immobility, spasticity.  For those of you not familiar with this horror, imagine being at the gym and doing 7000 reps on the same muscle, or picture a 2x4 wedged in a vise and clamped down until the steel indents the wood.  Welcome to my world.  Mornings are usually the worst, as I am in full body erection, a new meaning to the morning boner, and incapable of bending my legs or torso.  It's quite a scene.  This continues throughout my day as the simple act of sitting up against the chair exacerbates my spasm and stiffness.  Imagine a steel rod running up your back from the lumbar region to the thoracic.  Sound appealing?  It is insane and there is not enough time or energy in me to explain in detail what and how my pain reveals itself.  I am referring to physical pain, forget about adding emotional pain, like gasoline to a lit fire it just explodes.
     Sixteen hours a day I have a polar ice pack covering my lumbar area, otherwise I just cannot cope. Think of walking all day with pebbles in your shoes, on a much much smaller scale, eventually though you will lose the ability to cope and emptying your shoe is a must.  I don't have that luxury, and my shoes are both full, and yes coping is becoming difficult.  But this is only half the story.  If you are lucky, you may get an appointment with an expert in the physical medicine department in a few months.  The nurse may even call you back in a few weeks, or you can call to find you are caller 7 in the rotary.  Frustration is too subtle a word, it is shear torture.  It's a living hell.
     So back to the protocol.  At this point my next step is the intrathecal baclofen pump.  Just what I want.  A hockey puck and a rat tail inserted in my abdomen.  First a lumbar puncture of a test dose will determine if I am a candidate and then onto the surgery if so.  I have waited weeks and weeks to get the injection, and who knows how long to get the surgery scheduled.  Back to my point, trying to find medical help for MS is like finding a needle in a haystack.  Unless of course you want to admit yourself, as the recording say "if this is a medical emergency dial 911",  laying in a hospital bed being pumped with steroids or morphine is an option, and can be extremely appealing on a bright sunny nice day while your buddies are on the golf course. 
     Simple little tasks that healthy subjects do without thinking, answering a text message, returning a phone call, grabbing a water, hitting the john, these things are exhausting to me.  No, distressing to me and anxiety riddled.  Laying in a chair watching a ball game? Forget it, the pressure and sitting create stiffness and pain beyond imagination. Comfort is not a possibility at this juncture.  If I don't return your phone call, or don't text you right back, you now have a better understanding of why.  This is the reality of MS, a cold hearted, relentless, thieving, thoughtless, game changing, life altering, joy stealing, pain inducing, heat intolerant,  time consuming, mind altering, family stealing, energy sucking, brain draining, immobilizing, passion grabbing son of a bitch. Boy his attitude sucks you say, well I have read all the self help books, do the pilates, massage, stretching, PT, eat well.  live in the moment, head all the advice of friends, cry once a day like Buddha did and talk to other struggling patients and the like, and I am not scorned, and not complaining, well maybe a little, but really just honest and a little pissed off. And deservedly so!  Go to bed with an ailment and instead of waking to find it gone, try finding it the same or worse, over and over, repeatedly for days on end.  It wont' take long for your shoes to be full.