Thursday, December 6, 2012

When MS Takes A Stranglehold

    Well hello!  Yes I am still around, but in a bit of a capacity of turmoil and deficit thanks to the riggers of MS.  After the fourth attempt to refine the intrathecal baclofen pump, surgery rendered me incapacitated as I spent a very long three weeks in St. Joseph rehabilitation working as diligently as possible, but leaving in pretty much the same condition as the admittance.
     MS is a mean, ugly, and variable disease.  Aside from personal and emotional turmoil, I have spent several weeks in the fetal position in bed as I recover from surgery and disease progression.  Slowly and methodically I am trying to work on sitting upright, but the etiology of this demon has robbed me of something as simple as sitting upright.  Yes, simple.  Not for me however as I strive for an hour or two upright.  It's horrifying.
     Bits and pieces to get you all caught up:
Complete overhaul of pump and newly revised catheter...
Lots of watching television
Pandora radio
Texting my kids
Watching movies
Bed baths-so humiliating
Fortunately I have plenty of food, and great caregiving, but recently encountered an event that left my most prize possession, friend, and caretaker in a precarious position.  It was 7:30am and business as usual Mom walked down the ramp outside , built for me of course, to retrieve her liberal rhetoric The NY Times, when suddenly I was awakened by her cries for help.  I heard a thud, and the emotional distress from the ramp parallel to my window.  As she was retrieving the paper, she hit a patch of ice and went heals over head and head over heals.  As I lay there a "functional paraplegic" listening to the cries of my mom, a million flashes took over my mind .  The old me would of had her over my shoulder and inside within seconds, the new me lye there as my heart felt as it was being torn from my chest.  I could do nothing, and whereas the story is not about me, it surely helped to solidify the damage this fucking disease has insulted me and devastated us all with its effects.  It's difficult not to take responsibility when for it not had been for a pump refill that morning she would still be in bed.
     The ambulance soon arrived and carted her off as my hired and caring caregiver Kim graciously took me to the appointment.  My incredible and loving sister Dana flew in from Florida in what seemed like minutes along with my father who was in Florida preparing for surgery as he battles spinal stenosis. My older sis was stuck in Chicago otherwise she would have as we'll.
     So, whereas I wish I had better things to report, this is real life, the horror, the randomness, and the reality of a family giving up on trying to figure out the answers, but coming together and following the notion if you're going through hell, keep on going.....that's it for now as I sign moms bright orange cast consuming her broken ankle.

Friday, September 28, 2012

Why Do Doctors Say Stupid Things?

     About six months ago I went to see a neurologist.  Not just any neuro, this guy was Chairman of Neurology at a major hospital and college,  and had been for umpteen years.  I can imagine the various degrees of ms and it's complications that have made it into his office.  I anxiously counted the days until my appointment only to conclude afterwards there needs to be a "jump in my body button" that I can press when a neurologist rolls his eyes to patient ideas and recollected once again just how immune these guys are and how they don't get it, especially when asked an opinion of any therapy outside of the "box."
     I had waited several months to visit this neurologist.  Unless a patient with ms is having a severe life threatening attack, then it is typically hurry up and wait.  Imagine having a cut in your finger requiring stitches and having to wait a month to get it stitched.  Naturally by then it's too late and hopefully it will heal on it's own.  Now on a grander scale imagine being unable to walk, and waking up one morning and feeling that the paralysis in your legs is creeping upward above the waist.  Panic and anxiety quickly control your mind and the sensation becomes more pronounced.  Your stomach churns, your palms sweat,  your eye twitches, the numbness in your already numb hands increases, you lay in bed unable to jump up and grab the phone, horrified you watch the clock from the current time of 6am until the neurologist office opens at 9am. Youkeep your cell in bed for emergencies and start calling at 8:30 just to see if someones in, but the answering machine tells you nobody is there and explains that  if it's a life threatening emergency call 911.  Hmmmmm.  Depends who is defining life threatening, considering you can't even get up on your own it sure as hell is threatening and not much of a life.
     Finally 9am rolls around, you dial repeatedly but keep getting the machine.  Now feeling hopeless and helpless you continue to hit the redial finally connecting, but only to find there are seven callers ahead of you! What! Anxiously you wait your turn, a human finally answers, she is chatting with a colleague and finishing a laugh as you acridly explain the whole situation.  "Medical record number please" is all you get from the other side.  Medical record number?  Please I am upside down with fear and just want to get in there, thinking for some crazy reason that the neurologist can actually help you.  Your first mistake.  "Lady please can you find me some other way?" "Name and social security sir?"  This is when I want to hit the button.  Jump inside lady, feel paralysis then let's see if you can feel me and try just a little harder you machine.  "Ok, I have found you, " callously she remarks.  "What seems to be the problem." Again you repeat the entire episode, as if the clerk is going to help, you picture in your mind telling the story to a tree outside and getting more of a response.  Without as much as a single sympathetic word you receive a " hmm" let me see.  "Doctor has an opening November 23rd!"  Doctor, I love it , as if he is some iconic world renown perfection.  Can't he just be The Doctor?  Great a month away.
     The fact that you have this creeping paralysis is NOT an emergency.  It is unfortunately standard ms progression, and is no shock to anyone other than you and those close to you..  So you book the appointment for a month away, hang up, and lay there, immobilized, alone in your thoughts, horrified, still paralyzed, wondering how you will get through the month, again believing, tricking your mind that you will actually get some relief when you finally do see the neuro.  Welcome to ms, the incurable, seething, loathing, frightening, cowardly, life sucking disease and it's medical society associated with it.
     So back to this neuro, I wait months to see.  "Doctor" will finally see me now.  The anticipation is killing me as for some odd reason I think to myself this is the guy that is going to help me, momentarily forgetting that 150 years has passed and aside from a pipeline of  symptom management fallacies and expensive drugs with side effect profiles a mile long the ms train keeps chugging along.  During the appointment the Chairman of Neurology ensues his run of the mill standard neurological exam, equipped with a $.30 safety pin for numbness testing purposes, all the while formulating his theorem before I am allowed to tell my side of the story.  "Please wait until I have finished my examination", he remarks.  Can't this guy do two things at once I think to myself.  Squeeze the fingers, tap the hands, follow the finger, same old shit.  Finally his interpretation reveals a stroke of genius.  The ms is advancing and there currently are no therapies for the progressive form of ms.  Only symptom management, again the biggest sack of bullshit in the world.  I would call it sedation rather than symptom management.  Take four of these every six hours and stare at the wall while someone wipes the dribble from your lips.  Body button please.  Jump in and feel what I am feeling, and then tell me this .  So I throw out a few "alternatives", outside of the ms protocol. Things like stem cells, CCSVI, LDN, antibiotics.  Wadda ya think?  No sooner than the words left my mouth, Doctor gave me the old librarian look.  You know the one where the eyes glare at you above the glasses, chin at the chest.  "None of these theories are proven, for example we know very little of stem cells, and,there is the possibility of growing a bone out of your chin or something!" WHAT THE F I think?!?!  Three cheers for the chairman! Genius!
     This Sultan of Neurology went on to tell me how in 46 years he has never seen a patient in the advanced stages make recoveries and only very subtle improvements.  Boy what amazing encouragement, and how dare you say something so negative and hopeless to a 44 year old man clinging to any hope he can find, his golden years stripped from him by this thief ms.  Where is that button for this mother f'er.  Feel this!  Feel what I am feeling then say that!
     So back to the car, tail between my legs, doing my best not to get depressed, letting out a cry and some obscenities, I think to myself  how a Dr can feel good about himself, saying such stupid things and other than a handful of scripts, giving me the same old nothing.  I guess being in retail my entire past working life, and not allowing a customer to go without being satisfied, I cannot imagine such shitty and worthless customer satisfaction.  Worse off I am not talking about a ladder here, I am talking about life.  Human life, feelings, family, survival, and all that goes with it.  Just getting to the appointment is a daunting task, getting a kick In the ass is so inappropriate
     Hope is all we have.  When told that there is really "nothing" to rectify this paralysis, it is easy to just say the hell with it and give in.  Giving in is not an option.  Let God ultimately take your breath away. Not "Doctor."  As difficult as it is remain focused on a goal, on the ultimate prize, keep going and be thankful for what you can do.  I have to remind myself this all the time.  I slip into the suck every day, and somehow comeback, but need reminding constantly.  I tell ya, it really hit me in the face when Dawn, a reader from North Carolina, a mother and caretaker for her paralyzed son who cannot talk reminded me how lucky I am to be able to speak.  Think about that for a second.  Who doesn't take speaking for granted?  Next time you blurt something out, think about how lucky you are you can talk!  As crazy as it sounds.  She would love nothing more than to have a conversation with her son.  Sure I get my share of bedtime, but at very least I can explain to Mom and Dad how I feel and have a conversation, even if it is from bed or whatever.
     If you haven't already, start appreciating what you can do and what you have, ignore hopeless chatter from the medical world and for God sakes as Jesse Jackson put it so eloquently, KEEP HOPE ALIVE,
      I leave you with a video of my friend Brock, who was told by his doctor that he would never walk again after a horrific accident left two dead including his father, and paralyzed Brock from the waist down.  Living on faith, determination, grit and super hard work, good friends like Mike Barwis who believed in him, Brock will be strolling down the aisle in the near future, regardless of what "Doctor" said.  You are the man Brock.  By the way, he has come even further since this video, much further and can walk unassisted several hundred feet.  So there!

Monday, September 17, 2012

Dont Wait It May be Too Late

     How many times do you come home from work, or for you homemakers at the end of the day exhausted, spent, beat up, wanting relaxation and peace?   It's only normal to feel this way.  I have experienced some alone time in the last 9 weeks where I have reflected so many experiences I would like to share where I felt just that and now this notion takes on a whole different meaning.
     Considering my last two surgeries have flipped upside down what little quality time I had during the day, my new day has been filled with the experience of either lying in bed or a short time in the lazy boy chair.  Either way it's about  90 percent sedentary.   To bring you up to speed, I am having great difficulty sitting upright due mostly to the MS etiology process, but to add insult to injury the two surgeries to get this damn pump working required cutting through muscle and cartlidge in my low back, thus creating a "pseudo" exacerbation and adding to the weakness in a profound manner.  No driving, sitting in chairs, long scooter rides at this time. Sitting creates a strain on my spine that in turn creates incredible pressure that in another turn forces me horizontal.  AS easy as it would be to just say the hell with it, I am doing the converse and I  have entered into a rehabilitation program with the hopes I can regain some fuction before the next surgery, yes another slice in my back to either repair or pull this pump out of me, haven't decided as making it through today is my main focus.  So rehabilitation requires great discipline.  I mean you want to talk about "manning up" as some ignorant to the term put it, this goes way beyond.  Imagine red hot poker sticks up your back while at the same time weakness and the ill side effects of medication transform you into a feeble, doped up, painstakingly exhausted bag of bones being put through a series of exercises that would hurt if there wasn't anything wrong with you!  All you can think of is getting back to bed yet somehow someway you just keep pushing almost in a divine manner.  Imagine, exercising with a belly full of muscle relaxants and pain relievers, its contraindicated!  Either do or die.
     Anyway back to my point.  You just get home your whipped, ornery, hungry and tired and your kid says he wants you to go ride bikes.  Sure you are perfectly healthy but your tired so you kinda give him the old"gimme a few minutes" until he is on to something else and you get your peace.  Let me educate you on what peace is.  Peace is laying in a bed that faces the outdoors and watching through a venetian blind a father your age riding his bike and his little guy behind him admiring him like he is Ghandi or something.  Not the kind of peace anyone would want to or should have to ever experience.  This peace, a result of illness, of lack of movement, of a relentless disease that comes out of nowhere and gives you more peace than you can imagine.  Peace is intentional, this type of peace is not peace at all. It's horrific, involuntary, forced, and fighting it only makes this "peace" worse.  It's not peace it's persecution.
      Change the rules and your mindset, fight your "tiredness", take the bike ride, go to the store, kick the ball outside, run to the corner, chase your kid, wash the car, clean the garage, run the dog, fix the gutter, play catch, get ice cream, whatever!!!! Damn it don't stop,  go balls to the wall because you cannot imagine what its like to spend your day in bed and then go to bed again, where you already have been all day, when everyone "normal"hits the sack.  It's no picnic believe me it plainly sucks watching the leaves blow in the wind, hearing the cars fly by, the kids laughing, all the while practicing your best Zen meditation battling your emotions, wanting nothing more than to be DOING, watching light turn to dark, repeatedly, getting out only when you have a Dr's appointment, your new "highlight.
    I was introduced to a really amazing family via a friend over the internet.  The Prudhommes have their own battle, as Ryan a 27 year old man, married to a wonderful supportive woman and father to a one year old son was out of the blue diagnosed with stage four cancer.  Ryan has exceeded his life expectancy since being diagnosed.  His secret, Living The High Life.  Take a lesson from the Greek and the Prudhommes; take that bike ride with your kid, kick the ball, live the high life, your bed will still be there when it's time.

Monday, September 10, 2012

Medtronics Intrathecal Baclofen Pump Tragic Saga Continues

     When I set out on this baclofen pump journey I never dreamt things could get so ugly, nor was I warned how invasive this surgery really is.  I wasn't aware a bone was removed from the spine to allow space for the catheter nor was I aware such a large incision was made through muscle and cartlidge in the back.  Worse off I was never warned about possible catheter migration, baclofen titration issues, withdrawal and the like.  Shame on me, shame on Henry Ford Hospital Neurosurgery, Shame on us both?  This process was presented to me like a walk in the park, and the Dr commented how his pump patients were among his happiest.  Naturally I was "pumped."  Either way I am worse off now than I was 9 weeks ago.
     So here I sit, no lay, while the pump beeps inside me reminding me of the four emergency room visits, fifteen visits for titration of the medicine, two catheter migrations, and three incisions including two in my back to get the catheter to stay in my spine, which it hasn't and currently is floating around my back like a buoy in a lake, non functioning.
     My several complaints as to this even more sedentary lifestyle seem to fall on deaf ears.  I have been basically bedridden since surgery one, and knowing how trauma to the body exacerbates the condition of a patient with MS never in my wildest dreams did I expect this incapacitated invalid state I would be in. "Write a book," "watch all the Marx Brothers Movies," was the solution from the articulate yet callous neurosurgeon, who by most likely accounts has never had to spend nine weeks and 90 percent of his day in bed while his four kids, his business, and the rest of the world continue to try to function and continue without him.
     Never in my wildest dreams did I see this kind of thunder and lightening on the horizon.  I was driving, working a half day, getting out in my scooter, and now I am doing nothing of the sort.  The pain and mental anguish I am experiencing is a test of only the highest magnitude imaginable.  Worse off, my only option is still another surgery.  Either I remove the components of this machine sewn inside of me, or I allow a third back slice and another shot at a hypothetical catheter anchoring, with no guarantee it will stay inside my spine.  So its either shit or shit basically, and very surreal at this point.  In fact it's a nightmare.
     The stitches in my back were to come out today, and as they stretch and yank and burn and pull, the spasm and spasticity go from worse to torture.  Naturally the Dr called in sick, par for the course, so it looks like I get to keep these bitches in another day and the black cloud hails overhead.  How can this be happening?
     Naturally I researched another Dr to get another opinion, and as luck would have it she was fantastic, knew every angle of the pump, has experienced fantastic results, and out of 200 patients has had zero catheter migration.  ZERO!!! What happened to me?  Surgeon ineptitude? Technical anchoring catheter problems? Greek spinal rejection?  What the hell is happening here?  Nobody has the answer.  Either way I am stuck here in bed, in pain, mentally, physically, with spasticity beyond belief, and no matter how much oral baclofen I take I am not experiencing relief.  I cannot sit in a chair due to weakness and spasm, can't work, drive or do any of those things I discussed earlier, and beep beep beep goes my dis-activated pump. WTF?
     There are many more details to this saga, and this is merely a synopsis.  One time in the ER they were so confused and had no idea how to program the pump that I had to call the rep on my cell, who traveled 160 miles to my hospital bedside to shut it down at 2:30 in the morning after wincing in pain for 6 hours prior!  Should I be responsible for my own care in an Emergency Room of Henry Ford West Bloomfield, a major Hospital?
    Moral of the story thus far: Do not take Medtronics Intrathecal Baclofen surgery lightly.  Do your homework,  Don't panic because your symptoms are so bad.  Don't rush.  Find competent and informed and familiar care. Find a surgeon that has done a ton of them and a Dr who has titrated the pump for many many patients.  When the new Dr saw what was in my pump she had never seen a concentration like that.  What the heck she commented?  Meanwhile I have made around 14 trips to the Dr who was titrating and as much as I really liked him, it was as if I was merely spinning my wheels and had no idea what was in my pump was not the proper concentration.  How would I?  I was relying on his expertise.
      Do these things and hopefully with a little luck you wont end up like me.  Nine weeks lost, worse symptoms, traumatized, incapacitated, pissed, frustrated, remorseful, dissapointed, anxious, and at times very hopeless just lying in bed, clear minded yet trapped in a body that is frozen like the Tin Man.  This is Bullshit my friends.  It's wrong, unfair, has stressed my family, my finances, and confused me more as to my purpose in this life.  The guy in this video is a putz but its the second alarm I get to hear every half hour, a reminder of this hell and the longer road ahead:(

Sunday, August 19, 2012

The Supernatural Being?!

     I have learned in my short life that there are some subjects people really don't discuss because of their diversity in opinion and controversy.  This includes abortion, politics, religion, etc, and until I had my own blog I followed that ideal, but since this is my blog I guess I can discuss whatever the hell I want.  Therefore today I feel like discussing Almighty God, The All Knowing, All Powerful, Allah, Almighty, Creator, Divine Being, Father, God , Holy Spirit, Infinite Spirit, Jah, Jehovah, King of Kings, Lord, Maker, whichever your intention chooses to describe The Supernatural Being that many of us, including me follow.
     I recently feel I have been following the darker side of the Christian experience than the brighter side and I have a lot of questions and must admit my faith has been challenged immensely.  I have tried to find answers and constantly find myself asking the universe, but feel my questions fall on deaf ears.
     As we all understand, God sent his Son into the world for the purpose of redeeming sinners, for the purpose of re framing their image to be like his Son.  I'm not sure what happen to the Uni bomber, The Oakland County Child Killer, The filth that killed so many wonderful people in The Batman movie that horrid night and so on, but yet there still remains this "plan", this grand purpose, and things happen " for a reason."  With this I struggle as with this reason for being afflicted with a disease for the greater "plan?!"
     It is said that God's design, or his purpose for these unpleasant experiences is our need to suffer in order to fulfill his will.  Again I struggle.  "Sufferings are to try us,""to show our sins,""to build character,""to bring us closer to God,"to make us useful,""to prepare us for the glory to come."  Recently I experienced a horrible UTI where I was hospitalized for 4 days, took an ambulance to the hospital, required three days of catheterizing, and relied on the nurses assistant for just about every function.  Why was I so tried? I am not sure what sins were exposed except for the soiling of about ten gowns, nor did I feel like I was doing much character building, making myself useful or preparing for something wonderful to come my way.  In fact it's been downhill since, as I have lost a ton of independence, my apartment, gone on disability, continue to muddle through a divorce, and require private nurses to get showered and dressed.
    Today, however was a beautiful day, and I switched gears completely and spent a few hours at the park near my folks.  I met a wonderful family while I was there, and after striking up a super conversation with the father of the family, again I must say I struggled with my faith.  This man was in excellent shape, very clear minded, very well versed in the bible, and a God fearing Christian.  He shared with me something very private.  He was on his second marriage as his first wife was participating in an extramarital affair with none other than the Priest of his church.  He felt, and I agree, had that not happened he wouldn't have been in the park with this wonderful second chance, and he was very content, but again I struggle.
     I realize many of us find comfort in the thought of the supernatural, and we try to have a strong faith as without it times can be very alone and anxious.  I am in complete and utter belief that there is a larger picture, but all the suffering that people experience.  Is it really necessary?  Really?   Do many of us need to have the living shit kicked out of us, literally, in order to become better people and get closer to our maker?  Again I struggle.
     It is said that one day there will be a Resurrection.  Ok I am fine with that.  But when? And why do so many have to have senseless deaths at their office, or university, or having coffee, or just watching a movie!!  What's he waiting for?  Again I struggle.
     My favorite number is 23, for many reasons.  My birthday, jersey, number, roulette number, and a host of other reasons.  Ironically it is my favorite psalm.  "As I walk thru the valley of the shadow of death, etc etc."  this gentleman I met today brought up a great point.  It says "thru."  Does that mean this MS stuff is an experience, the vehicle thru which I will learn all these lessons?  I cannot say I agree or disagree, but I sure hope he is correct.  Again I struggle...But I feel essential that I believe..Nor can I afford not to....


Saturday, August 4, 2012

Multiple Sclerosis-What's In the Name?

     The other day I was reminded by a good fried of mine to be thankful once again for what we can do and not focus on what we cannot do.  It is really easy to get caught in the can't do when MS seems to rob me each and every day.  This friend of mine, who when often straightens me out I usually admit to him "you Jewish bastard, "you're right again."  He usually proceeds to throw the stupid Greek thing at me and I am good for a couple days.  However, the can't do's usually come back to me as I forget his advice often quite simply.  It can be something as easy as dropping my tooth brush thanks to an entirely numb hand without sensation and I get pissed with my inabilities.
     It has been a heat lovers dream this Summer, breaking temp records consistently.  Conversely, for one with heat intolerance, correction, major heat intolerance this Summer has been hell, literally.  As a result, my window of activity has shrunk immensely.  I may get out three hours in the morning by way of perhaps a scooter ride, spend the next eight hours indoors, and try to get back out for the latter part of the day when often coolness prevails.  So the other day while talking to my friend on the cell, the Jewish B as I refer to him,  while outside one late afternoon, bitching and cussing about how little I am able to do, he quickly silenced my rhetoric.  He who also suffers from "supposed" MS, admitted how he would kill to spend three hours outside, as he has been housebound for almost two months thanks to the heat, symptoms, and the horrific and ill effects of MS. 
    Here I was outside, uncomfortable, but still outside,all the while he remains confined to the house.   I am barely out there, yet I felt like a complainer, inconsiderate and negative, while often forgetting the fact I am not the "old" me but rather a sub-version and better start being thankful for those three hours out which seem nothing to me but would mean so much to him.
     MS has a way of doing this.  Just the acronym alone is revolting to me.  MS.  Multiple Sclerosis.  God how gross can two words be together.  Lots of scars basically is what it means.  MS. Managing Stress, Merely Surviving, Marital Status, Muscle Stiffness, Mainly Shit, More Shit, Mostly Shit, call it whatever you want but any way you put it it sucks.  The key is not allowing it to consume the three hours you get to go out each day, before returning to captivity, jail, bed and the like.
     How many of you get up each day, work, play, clean, eat, party, and hit the bed without even considering the fact that 15 or 16 hours past by?  Well I am here to tell ya, you better start recognizing what you're doing, and as opposed to getting up each morning and complaining about how tuff yesterday was, remind yourself how lucky you are to kill 15 or 16 or 17 hours today.  Imagine cutting that by three quarters, suddenly finding yourself confined to a wheelchair, suffering with pain and sickness, hoping and praying that you are well enough to get three or four hours in without relying on others to get you through the day, if you're lucky enough to have the endurance and the "others," as many do not.
     This weekend for me, although hotter than hell has been one of the most special and beautiful weekends in a long time.  I have had my son Michael, who is nine years old, hanging, laughing, cuddling, eating, and playing over the house, and as I mentioned earlier, enjoying that three or four hours with me.  Take what you can get no matter how little or insignificant it may seem and make the memory last the whole day.  If you are lucky to keep your health you will most likely take this time for granted naturally. 
     When every day those two little letters MS are so crippling to me, this weekend they represent one thing, Michael's Smile, and forget the rest, this is the memory I am focusing on...

Tuesday, July 31, 2012

Prisoner Of Whatever

     I can only imagine what a prisoner of war must endure.  I feel a pow of sorts, my war both inward and outward with MS.  I guess the big, and thankful difference between myself and a pow would be that I have my freedom, kind of.
     Due to my inability to walk at all, struggling with heat intolerance, back spasm, feet and hand numbness, etc, etc I often find myself struggling to get through the day.  On top of it all I feel like I have the flu most days, with the room spinning and nausea like I ate cat shit or something. Some days it is easier to overcome than others, depending on what the cat ate.  Sure I am thankful for what I can do,  but it is easy to get stuck on what I cannot do.  This exercise can be emotionally taxing, at least for me.  I have always been a hands on guy.  I loved cutting the grass, shoveling snow, tinkering in the garage, cleaning, organizing, perfecting etc.  Recently I have lost so much, and it just seems to keep coming.  I had to make a monumental decision this week, one I would never ever have imagined.  I applied for disability,  which technically is about six months away, but the reality is its imminence, and it just plain sucks.
     I am not going to make any excuses or compare horrendous diseases, but now it has finally dawned on me why friends and Dr's the like always seemed so shock that I was working.  It seemed more times than not the Dr would ask me if I was still working, and I was always puzzled why they would ask such a thing, until just recently, when my opponent (MS) has become so powerful that mental and physical fortitude just are not enough to work.  The incredible discomfort, pain, and the like of this bitch has put me in a very precarious position.  It's tough to work from bed, and crippling fatigue and pain are just too overwhelming.  Forgive me if this post is all over the place, I seem to be having difficulty articulating the devastation I am experiencing.
     So back to the pow thing.  Imagine a giant cage, big enough for a person, where the body is locked in completely, but the head sits on top of the cage free to move around, swivel, think, and communicate.  That's what paralysis can feel like.  Every once in a while you unlock the cage and you are free to move around, but considering you are stiff and in pain your mobility is limited.  You get in the wheelchair or scooter for a half hour or so then right back to laying down.  Its like being in a cell, shackled to a steel ball, a caged bird, it is frustrating, upsetting, indescribable, horrifying.
     Maybe pow is too strong of an analogy, but it is the best I could think of.  Sure I can read a book, do a crossword, read the paper, but man I hate that stuff.  I am a figety guy, I need to get up, change the scenery, start a project, whatever, and this ms bullshit is not conducive to my lifestyle, and sure tell me to accept and adapt but try for one day disrupting your routine and sit in a chair for 12 hours, then tell me to adapt and accept.  I know it's the only option, but it's like ramming your head into a wall over and over, it's senseless.
     The true difficuly of owning up to an incurable disease is accepting that there are not answers, merely inadequate symptom management,  Every day is an exercise in futility, fortitude, patience, and discipline.  Today and every day I SALUTE  all the prisoners of their own wars.  May you have the strength to wake up each day and keep going,  knowing what's ahaead of you, and may you endure, overcome, adapt, accept, and handle the adversity, giving thanks for any good that comes your way no matter how small or how insignificant it may be.  That ability is genuine greatness...

Wednesday, July 25, 2012

Intrathecal Baclofen Pump-(WARNING GRAPHIC)The power of the pump.

     After years of dealing with uncontrollable spasm and pain and spasticity I decided to take a leap of faith.  I reluctantly took the plunge along with about 60,000 other worldwide users (thats it!) to seek a better more comfortable life.  Believe me I am the last guy to put a foreign object inside me and by far the most "in tune" person you may ever know.  Nonetheless I found the areas best neurosurgeon and had a Medtronic Intrathecal Baclofen Pump installed in my abdomen.
     I could not tolerate oral baclofen.  It made me sick, listless, and depressed.  I tried tizanadine, clonazepam and everything else including physical therapy made things worse, pilates, medical mj, atlas chiro, you name it.  Nothing helped and I have become more and more immobile.  As the MS Society boasts, MS really does stop people from moving.  At least it has immobilized me.
     So, as far as ITB goes it has been quite a journey, and a lesson in patience like I never dreamed, or was warned.  The medtronic rep was at the bedside prior to insertion and told me there would be a process, but nothing to this extent.  So I will not give all details, basically because I don't want to scare the shit out of anyone, but I will include some actual accounts of my story.
     The surgey is done under the good night Irene type of anestesia.  I was out like a light.  It seemed like a few seconds and I was in the ICU, where I would be monitored for 23 hours.  Huh, bullshit.  Monitored my ass.  More like tortured.
     The pump was set at the standard distribution setting, and now I was receiving micrograms by way of a catheter in my spine, as opposed to 60 mg of shitty ass baclofen orally along with botox and vicodin, all which did nothing and was ruining my lifes quality, not that there really is much currently, but please bear in mind if you are a candidate, it's a work in progress, and nothing is happening overnight.
     Ok, so night one was basically hell, as I was taken off of oral baclofen entirely, and went into a major withdrawl and exacerbation of pain.  All Dr's do it differently.  Some taper some don't, and considering he did not authorize any oral I suffered insanely until they could get him on the phone.  After almost 2 hours I received 10 mg and things calmed down, but by then the damage was done, physical torture and mental strain.  I would have preferred being waterboarded.
     The next morning the surgeon showed up and cranked up the flow rate on the pump, figuring this would fix matters, and after a quick bite sent me packing.  I stayed with my parents at their home.  They set up a makeshift recovery room in their family room and as the day passed I became more and more listless.  I was a complete noodle, complete without any muscle tone, and I couldn't even support myself in a chair.  Scared, confused, horrified, and basically shitting my pants, my dad who is the local district Judge called his friends at the Fire department, and within minutes I was rushed by ambulance back to the Hospital where the surgeon was cutting into another subject.  The ambulance was without A/C and considering it was 104 degrees I thought I was going to die.  Correction, I had hoped to die.  Considering my condition the bumpy ride kicked my already kicked ass, and upon arriving at the hospital met the surgeon who dialed the pump down.  I was in shock still, and the trauma of this thing was relentless, and surely never explained in any manner to me that this bullshit was a possibility.
     Back home to Mom's where I did not leave bed for roughly six days, and a 7th day house call by the surgeon to again dial the pump down considering I could not move a muscle.  Everything hurt and my back spasms increased to much higher levels than prior to surgery.  Bullshit, and believe me I am leaving a lot of detail out because it may traumatize readers.  Intrathecal Baclofen has been known to turn lives around, but seems to be turning my already upside down life further down.
     Oral baclofen was reintroduced, specifically the opposite reason I got the damn pump in the first place, and after another week bedridden I had to get up.  I am so sick of missing out on life and why is it doing things that are supposed to help me are merely debilitating me.  It was necessary to see the surgeon and so into the van Mom and I dragged my noodly ass up and into the office.  It was time to remove the staples, another treat, from the belly and back incisions, and come up with a plan, all the while the Dr. was and is very confident that this thing is going to help me.
     The pump was cranked to its lowest setting and again I was taken off oral Baclofen, and again experienced some crazy ass withdrawl stuff I would rather not share.  Who is ready for a pump so far?
     Fast forward a whole lot of suffering, bed, and bullshit to today almost two and a half weeks later I am still a noodle, but not without back pain and spasm, which I am told may be secondary to the low tone the pump has created.  Now working with a specific pain Dr, the pump was emptied, cleaned out and a 50 to one diluted solution of baclofen reintroduced.  The goal is to now actually get SPASTICITY BACK!!!! Meanwhile, as my luck would have it the mechanism of the pump will deliver the old dose that is still in the catheter for 258 hours. Yes 10 more days of hell until the new potion kicks in. Amazingly the equivalent of 2mg oral baclfen is being pumped into my spine.  Thus, the power of the pump.
These are just a few pictures including the belly shot of the pump under the staples and the general area of the incision.  How does one prepare oneself?  All I know is Mom and Dad are a blessing and beyond God sent, working me through this in so many ways.  My belly looks much better today, but I am very upset as to what I have been through, and without any guarantee of what will happen in ten days.  Once again in an effort to live a normal life this ugly beast (MS) is cracking up, laughing, getting its way.
I don't want to really scare anyone from going through such a glorious journey, but rather please be aware that having a hockey puck implanted in your stomach could possibly disrupt your life for quite some time, and from what I now understand the process is about 3-4 months.
      For me the jury is still out, considering I am basically homebound, pissed off, listless, like jello, bummed out, and have been out of work for almost four weeks. I am not the typical case, but then what really is? Nobody told me my outcomes were a possibility, basically for one reason, they don't know.   I have had to again completely change my ways of cleaning, dressing, etc, requiring in home nurse assistance with everything.
     "Give it a try it can always be removed."  This is one of the great lines I now reflect upon.  At any rate, I am in it to win it, and there is no turning back at this point.  Time for another Mountain Dew, something I never drank in my life, but a necessity to alleviate the two week spinal headache I am experiencing as caffeine is supposed to help.
     Reality.  This is reality.  This is MS.  The bitch that "stops people from moving, as the MS Society so eloquently describes it.   Anyway time will tell.  It can always be removed!!!!
to be continued....

Tuesday, July 17, 2012

MS Alley-One locked door after another.

     Imagine if you will for a moment finding yourself in a dark alley, a very dark alley, the kind in your favorite thriller movie. You know the one where the guy is followed by a group of thugs, only to find himself in a cold, wet, dark, rat and garbage infested alley.  Along each side of the alley there are doors that he really has no idea as to where they lead, but what is trailing him has the potential to physically clobbar him, mame him, cripple him, potentially kill him.  As his heart pounds out of his chest, he is riddled with anxiety and a host of unfamiliar feelings, knowing the footsteps are getting closer  he tries to jump in the first door.  Its locked and he smacks his face into the cold rusty metal as he bounces like a superball to his knees, all the while feeling the presence of his assailant getting closer.
     He keeps trudging on, as giving up is not even an option.  So he picks himself up, dusts himself off and even though his knees and elbows are scraped from hitting the concrete, damned if he aint trying another door.  This one has a little give.  It opens about an inch before the chain reinforcement abruptly stops the forward motion and again he falls flat on his ass.  This time it is just a little tougher getting back to his feet, but the thought of what can happen if he lays there provokes him back upright.
     On to the next door, it flies open only to lead to another door directly behind it, locked like a vault.  Frustrated and scared, he grunts and groans and curses, lets out a blood curling scream and throws himself at the door, giving it everything he's got.  Nothing.  It just won't open, and yet the alley becomes darker, the footsteps closer, his fatigue intensifies, but he aint giving up. There are still doors he hasn't tried.
     All the while he is frantically checking these crusty, worn, rusty beaten up doors, life around him keeps moving.  He can hear the cars on the streets, horns blazing, glass breaking, but he doesn't have time to waste so he barely gives them a look.  He is fighting for his life, and relenting is not an option, so he fights to get in the next door, which happily offers him enough comfort to squeeze his body into, to catch his breath, before he realizes it goes nowhere and ends up on his back, wetter, colder, weaker, and older, more alone, but he can still hear all that noise in the world going around him, all of which he wants to be part of, yet those footsteps, the bad guys, still echo in his head.  He can't stop, and so he keeps going.
     By now he is naturally getting discouraged,  It doesn't appear that any of these doors are going to lead to anything that will allow him shelter from this horrific melee, but damn it he keeps going, even though he has missed out on the normal steady stream of what is happening around him.  He cannot think about anything but the assault that is weakening him, scaring him, emotionally and physically crippling him.  He knows he is running out of options and he feels he is trying his best, but luck just isn't on his side.  The alley gets even darker, the thugs are on his heels. and he finds himself powerless, running out of fight, running out of strength, wearing thin down to the core.  He gathers himself, he is weaker, he may have failed so far but something tells him that it just has to be that next door that he will find his solstice.
     This my friends is MS Alley. It's door after door and no matter how hard one tries to slam his shoulder into it, he finds himself more bruised up than when he rammed it.  It doesn't hardly seem fair, and it isn't, but it is reality.  Once in a while one catches a temporary break, takes a breath, recoups, and tries another door, but the bad guy is so ugly and so evil, he overpowers the good guy and leaves him wet, cold, exhausted, anxious, hurting, and torn up more than the last door.  For me MS has had an ugly pattern from bad to worse basically, and it seems that no matter what door opens, or doesn't,  it ends up hitting me in the ass, or the face, not that this story is consistent with all pwms, but it has been mine, and it appears the doors are painstakingly in shortage.
     I haven't tried every door, but I have exhausted a few alleys, and if just one of these darn doors would open long enough to let me hang for a while I would be eternally grateful.  I just want to live among the cars, the horns, the people laughing.  I really don't want much.  Just a few of life's simple pleasures...I guess that's life...mine anyway....

Friday, June 22, 2012

Who Is Gonna Find The Cure To MS?

     If you may recall in an earlier post, Esthe the hairdresser has MS figured out. Well I am proud to report she has outdone herself again. Originally it was salsa dancing, but now I am excited to reveal her latest innovative and cutting edge advice and advancements. Last week while catching a glimpse of my gorilla like fur encompassing my ears and neck, I realized It was time to make the scooter ride back across the street to see Esthe. After all, Wednesday's are $9.95 for a descent haircut, and being that it was tipping the low 100 degrees I though a trim might cool me down and maybe crossing John R Rd I may just run out of battery juice and get flattened by a semi. Heat has that effect on me and along with extreme weakness and double vision I cannot feel my hands or feet so a good head-on actually was kind of appealing! With my luck I would twist an ankle so I decided to just get across the road and get my ears lowered.
      As luck would have it, the salon did not have air conditioning, and quickly I was evolving into a three toad sloth. Esthe said she had some really great news but had one patron before me. There I waited, sitting in the scooter, quickly losing all feeling in my hands from the extreme heat, and really having a tough time with the tracking of my eyes and the accompanied nystagmus. Nonetheless, I struck up an exhillerating conversation with a 90 year old Vietnamese lady, also waiting, and we commiserated about our ailments delightfully. The aches, pains, heat, and bladder function were just a few of our similar complaints. A 44 yr old man and a 90 yr old gal, something just didn't compute that we had commonalities with regards to our ailments. Either way the conversation tickled me.
     Esthe kept looking over like a little kid with a secret, hurrying along the lady in her chair, overcome with delight as to whatever this revelation was. I was preparing myself for the letdown, but that little part of me was kind of intrigued. After all someone like Esthe is going to cure MS. Someone like her, without any preconceived notions, prejudice, or knowledge of what the hell MS even is will find the cure. I am convinced of it.
     Finally after all the bladder, bowel, suppository, and prune juice talk with my new Vietnamese grandma, Esthe waived me over. By now she was chomping at the bit and was ready to pour out like the opening of the Hoover Dam. "Helicopter" she blurted several times. Trying to follow along, I smiled and repeated her every one word. "Helicopter, sure I know what that is Esthe," I revealed fairly confused. "No, no she said, this is cure I tell you for problem, Helicopter!" " My friend say she have friend with same problem, she jump from helicopter and problem gone!". Sure I agreed, jumping from a helicopter would do it, surely the impact should take care of that I agreed. " No if you jump from Helicopter it scare you and the conditon will be fixed, then you take parachute to ground and problem gone."
      Apparently the shock or the exhilaration can cure any and all neurological deficits. For a second I was buying into it, since nothing else seems to be helping. Maybe MS is some kind of evil spirit that is controlling the ms population, and jumping out of a helicopter will scare the shit out of it, enough to eliminate its foothold!? It may not be a helicopter, but guaranteed some crazy ass theory will be our shining star, and although Esthe might not have it this go round I look forward to what she has for me the next time. At least I picked up a few pointers on loosening my bowels and received a pretty darn nice haircut for a mere $9.95 and a four buck tip. Helicopter. Maybe she's on to something? Sign me up.

Saturday, June 16, 2012

Reading Between The Lines

     Do you remember that excercise you had to do in class where you would line up, the teacher would tell the first guy in line a phrase, and by the time it made it to the end of the line it was completely butchered and misinterpreted? It was a simple phrase like"John has white hair" and it turned out to be "John wears whitey tighties.". Such is life. A mélange of misinterpretations, mix ups, and muddyuck. For those of you that aren't familiar with muddyuck, it is a tribal meal where a variety of consumable herbs are thrown in a bowl, and a nice spatoon of saliva is the catalyst that mixes the herbs and grasses together. Such is life. Muddyuck. A bunch of different words, experiences, triumphs and tragedies thrown in a bowl and mixed together, a little spit or sweat mixed in, and an output that is interpreted differently by each and every one of us. This concept is in some ways both a beautiful thing and at the same time can be a bastardly thing. Interpretation is as individual as DNA. You may be trying to do something special and proud of what you are doing and one may be hurt or shocked by that same thing.
      So who is correct? Both are correct. We are all blessed with our own opinions and yes, interpretations. This is why communication is a game changer. Without it you may never know that this special thing you do is hurting someone or even helping someone. I received both an amazing compliment and an upsetting interpretation of my actions recently. First, I had a lady email me and told me that she has a granddaughter that does not feel any self worth and this grandma fears what the outcome may be. Recently the girl became a reader of my blog and realized the good in her life and had made a 360 turnaround in attitude and often times will say " I bet George would love to do this!" To me, this is the ultimate compliment. Conversely I have some very very special people in my life that don't feel the same. Who is correct? They both are based on their own unique god given rights to interpret my words. Again the key is communication. It is the way it is and where the thought of hurting anyone is unconscionable to me, it is going to happen. Sometimes reality is a slap in the face and darkness can be freightening, but not all stories are inspiring in fact some are downright depressing, but again I have tremendous admiration for anyone fighting, no battling, any kind of illness and sometimes one has to read deep between the lines to find the good, or maybe it's bad, again it is his or her interpretation!
      Do get to the point Greek you say? The point is life is as unpredictable as the weather. A friend of mine lost her 40 year old husband yesterday to a heart attack while driving. Great shape, athletic, strong as an ox and this guy gets stripped from life just like that. Don't get so caught up in your interpretations in life. Focus on what you can do and not what you can't. If I admit that MS sucks that is my interpretation and my right. If you think it has taught you so much and was a blessing for you, so be it. I do not have to be in agreement just as you don't have to agree with me. Life can be a wonderful thing. It can also be a shitty and cruel thing. How are you going to interpret it? Is your way the right way? Is my way the right way? Not even God can answer that. That is what makes us all unique, all special, all different, and all responsible to deal with our own interpretations.

Tuesday, June 12, 2012

Just What In The Hell Are We Doing Here?

       Mornings are by far the toughest time of the day for me.  Firstly due to the realization that the relentless battle of the prior day has actually ended, and getting my mind around the new battle that commences the minute I open my eyes weighs deeply on the moment.  Secondly, it’s nearly impossible now to physically arise from bed unassisted thanks in part to the extensor spasms of both my long legs and the feeling of the likeness of a steel rod running through my spine.  The stiffness and spasm is so intense that I am unable to fold my body and need to be pulled off the bed in one straight piece starting at my ankles.  Once I can get my feet to the floor it’s a matter of unfolding my feet and sliding to the wheelchair.  All this while the vertigo, numbness, banding, and spasm reek havoc and plunder me into a mini depression.
     This is just the beginning, and I don’t have enough time in the day to go through my shower and dressing routine, I will leave that to imagination.  Once clothed and assisted to the lazy boy, the mental battle ensues.  I literally have to remove my mind from my body, considering it is only seven in the morning and I still have to think about putting on my game face for work.
     This process in itself can be relentless and debilitating.  It is astonishing and surreal each and every morning before the morning even starts.  Most healthy individuals have the luxury of hopping or jumping out of bed and taking a nice warm relaxing shower. Some even a steam.  I long for those days, and hopping and jumping are not in my repertoire.
     Out to the parking garage I go and into my modified van, adorned with ramp and hand controls.  Once I get into the seat and get situated I usually take a minute to reflect on what I just went through to get to the van.  I often cry for five or ten minutes or I will pray deeply, thanking the universe for getting me to the van, all the while realizing that the day has not even started and I still have to actually work. As if this wasn’t work enough.  When I arrive at the shop I go right to the freezer and get my polar ice pack, which will be my friend and an extension of my back for the next 16 hours.  Six to seven hours at work and the rest at home.  The spasm becomes so intense it literally takes my breath away, and aside from baclofen and an occasional zanax the ice is all I have.
     Nonetheless I somehow and someway make it through the day.  It could be  a divine spirit or inner strength, or just the fact that I need to provide for myself and family, or maybe it is just the fact that I am holding on for dear life and trying to do what it is every other working person does, but with some added complexity.  Keep in mind this is a microcosm of the day and the afternoon and evening require their own set of defenses.
     Multiple sclerosis sucks.  It beats the living tar out of me every day.  And if I let my mind go even an hour into the future I panic about what my next accomplishment will require.  It may be something as simple as getting a snack, or something much more difficult like emptying my bladder;  An organ that afforded me a four day catheterization in Beaumont Hospital and an ambulance ride to emergency over the Memorial weekend.   Unable to void 1000 cc’s as all it takes is 500cc’s to feel the urge, it was time to seek help.   Every day I work I tell myself it is the last day.  And yet somehow, someway I manage to make it to the weekend.  Sure I practice all the self help, healing chakra, meditation and the like, but you know what I am sorry unless you are Stephen Hawking it’s just a plain old bitch.  I write this today not only for myself, but for those of us that suffer every day, painstakingly, tirelessly, under the crucifixions of  a disease that has gotten nowhere in 150 years, except worse.   Today I salute those of you that do not have the option of sharing your story.  Believe me I think about you and recognize you and give you the utmost respect for simply allowing your eyes to open each morning, allowing the stimulus of a world you never could have imagined infiltrate your emotional and physical being, and somehow and someway you get to the next day.   Life before MS sure wasn't preparatory.  Does the guy in the picture above look like someone getting ready for the battle of his life, every day?  I think not.  His shiny new Mustang 5.0, his Eastbay high tops, and rolled up jeans (that was in then kids) and the best shape of his life.  Lesson to self-kind of cliche, but live every day like it's your last because you really don't know whats around the corner, lurking, laughing, creeping.  Go balls to the wall, hit the sack because you cannot move from doing so much in the day that you enjoy. Some days it's easy to wonder just what the hell we are doing here.  And what was the life prior to this all about?

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.

Wednesday, April 18, 2012

You Dont Know What You've Got Till It's Gone

     Today I went for a haircut.  Sure it sounds normal and easy and run of the mill...uh huh...Getting a haircut takes preparation, endurance, strength, fortitude and planning.  At least for me anyway.  Fortunately directly across from work there is a salon that is handicapped friendly and the stylist has become accustomed to wrapping me and the scooter with the apron to prevent the clippings from infiltrating us, so we kind of have a routine.   I usually wait until about six weeks between cuts because this particular stylist never stops talking, and it is necessary I am having a "descent" day to absorb her conversation and also my participation requires extensive energy.  Simply having a convo can be extremely draining of energy that is stored for getting through the work day.  Anyway the Greek was getting overly hairy and today was $9.95 for men's haircuts, so around ten in the morning I scootered over for my bushwacking.
     What's great about Esthe, a small lady from the Phillipines, is that she has absolutely no clue what multiple sclerosis is, and jaded she is not.  She's never heard of it, nor can she possibly imagine it.  She asks me every time, "how did you have your accident?!"  She goes on to tell me how I need to do more, much more to feel better.  "Start jogging, take more hot baths, get massage, do yoga, jumping jacks help with strength, start using dumbells or do lots of sit ups and push-ups," she insists.  "Salsa dancing is great for you," she reminds me each time.  Clueless, so clueless that it's refreshing and beautiful that her conception of disease is so virgin in nature. 
     I have tried to explain the whole "damaged nerve" "kind of like an "extension cord with cuts in it" I tell her like I am explaining to a child, but she just can't conceptualize it.  How great it must feel to be so far removed from such an ugly, monstrocity, life sucking, pain staking, shit-ass disease like MS.  At first she kind of pisses me off each time with her ignorance,  but then on the flip side it's nice that she treats me like every other Joe that gets his ears lowered there, and after a few chops I forget about just how shitty I feel.  I get a kick how she thinks I am going to salsa dance.  Does she think this scooter is just a comfy motorized chair I like to sport around?
     My symptoms are a constant reminder of the inner battle I am soldiering through, and they rarely remit, so a 20 minute haircut with Esthe can be both exhausting and enlightening at the same time.  There was a time I remeber similar behavior on my behalf.  Ironically Ms affects four people at work out of thirty, not that it doesn't affect all my colleagues, but four of us either have this bitch or have a spouse with it.  I remember Vic telling me about 8 years ago how his wife asks him every night if they are going to his dad's house that evening, when in actuality he died years and years ago.  She suffers cognitively, and I would think to myself what in the hell is that MS crap?  Just like Esthe I was the clueless one.  I would give anything to know nothing about this disease, but instead have been forced to eat, breathe, and live it.
     Everyone seems to have their shit, an old friend recently contacted me about his battle, two sons fighting Batten Disease.  I had know idea it existed, and this amazing family is humbly fighting and contacting ME with support!  I wish they were like Esthe and had the good fortune of having no clue.  Fact is, be kind to people as you have no idea what they are battling, and its not until it's gone or taken away does one truly realize what one has.  Please don't take your good for granted.  Consciously realize the great gifts in your life and don't make the mistake of taking them so lightly, even something as simple as getting a haircut...

Tuesday, April 10, 2012

A Thousand Words-The MS Version

     A few weekends past, two of my favorite leaves from my tree slept over my apartment.  Charlie and Michael are my 9 year old twins going on 16.  They love to see movies so we decided to see A Thousand Words with Eddie Murphy.  We have seen a lot of his films together, including his portrayal of a wildman cop in Beverly Hills Cop.
     After stretching the truth on a deal with a spiritual guru, literary agent Jack McCall (Eddie Murphy) finds a Bodhi tree on his property. Its appearance holds a valuable lesson on the consequences of every word he speaks.  Considering he can't keep his mouth shut, and everything that flies out of his mouth is either selfishly mean or sarcastic or just full of bs, the leaves from this Bodhi tree start to fall.  He soon realizes that he better watch his words because there is great significance to this tree and for every word a leaf falls to the ground.  He feverishly looks for a solution to this phenomenon, until finally he discovers his answer deep deep inside the fiber of his being.  When and if all the leaves fall, the idea is that his life will so pass. 
     Half way through the movie while the rest of the audience was laughing hysterically, I became actually quite saddened.  As I sat between my boys and watched them devour popcorn and root beer like it was the Final Supper, it dawned on me just how many leaves I have lost in the past four years as a consequence of Multiple Sclerosis.  Believe me I couldn't have been happier sitting with the boys.  They are a riot and there is no two alike, but from the lost feeling in my fingers and feet, to the inability to walk,  the MS bitch has downed more leaves than I could have ever imagined.  The days of driving my truck, working out, playing ball with the boys, fishing the Detroit River, taking hot showers, drinking hot beverages, the leaves continue to fall from my tree.
     Today I left work early because the MS beast was knocking at the door. Big time.  As I lay on the couch it was only around three and the thought of lying there until bed was very unsettling. Another afternoon overshadowed by the beast and robbed like a thief in the night. So damn cliche. I was scrolling through my IPhone and came across a picture of one of my favorite leaves.  My 15 year old daughter Stacia and I getting ready to attend The Daddy Daughter Dance from about seven years ago. It happened to come through and old email and I saved it on the phone the other day.  What a great memory it was. This is one leaf that will never fall from my tree, and knowing that tonight was her lacrosse game, I took a lesson from that simple movie and dug so deep into my core, dragged myself to the scooter, out to the van,  and damned if I was going to lose another leaf, I was gonna see her play.  Turned out she scored a magnificent backhand breakaway goal, and another where she juked a girl out of her shorts and flung one past the goalie into the net. 
     As I sat in the scooter I pictured in my mind new buds growing on my tree.  I managed to stop another leaf from falling by being at that game,  and even though I could have easily stayed in bed today I wasn't consciously adding to my pile of leaves.  It's incredible how we must all dig deep, right to the core, healthy or not, every day brings with it a new set of challenges.  Granted battling a disease multiplies things by one zillion, but I warn you however, it is too easy to let leaves fall, and some days it is even inevitable, but once there is nothing left on the tree it's just going to be too damn late.  Try your darndest, dig deep, dig deeper, throw up if you have to, scream and curse at the universe, shed tears, yell like a mother f'er, but damnit if it is at all possible, try and keep your leaves on your tree.  I appreciate the difficulty and anxiety, but don't help satisfy the beast or let it have its way.  Give it hell.

Friday, April 6, 2012

Reasoning With The Unreasonable

     On the six o'clock news there was a story about a guy, a former dedicated Emergency Medical Technician, who was calling out to the general public for help.  Turns out he was in an accident of his own and became a double amputee overnight.  Here's a guy that for 23 years was the first person on the scene when it came to lifes random devastation.  There he was like an angel of God tirelessly doing whatever he could do to maintain, revive, comfort, or ease the pain of any affliction that relative emergency required.
     It's been eight years since he has been able to have a normal shower or bath, due to his insufficient funds and accessible living quarters, and with the help of his dear wife he mainly required sponge baths or shampooing his hair in the sink.  The guy had to suck up his pride and dignity and call the news to see if a contractor would be willing to help him out, gratas of course, in making an accessible bath.
     Every day there are new stories, heartfelt, unfair, unreasonable random acts that create suffering and change the lives of families forever.  Why?  I used to ask the universe all the time.  Why me?  Well I have recently stopped asking because I have come to the conclusion there can't be a logical or reasonable explanation for a guy to suddenly lose his legs, or in my case the ability to use them.  It's as if some high power throws a dart off the top of the 15th floor and it randomly hit me and guys like this EMT square in the head. 
     I have heard it all.  These things happen for a reason.  You were chosen to teach others.  Blah blah blah blah blah.  Maybe I dont feel like being the example.  Is there anything wrong with that?  I can only imagine his suffering, having had 23 surgeries for infection created by this accident.  However there was one thing that really smacked me in the face. For eight years he has sucked it up and managed to find ways to overcome the normal hygene routine of a simple shower. This is one area surely most people take for granted or complain that it takes their shower so long to heat up.  I know many, including me who would love the chance to stand there and wait.
       I used to love a hot shower enormously.  Especially after a cold day of golf or getting caught in a cold rain, oh the shear pleasure it was to let that scolding hot soft water caress my body like the hands of an angel.  Now its like climbing Mount Everest, and I am exhausted when I am done; however, at least I have the means to pay for help, utilize a bath chair, and wipe down with a warm fresh towel.  Simple pleasures.  That's all this guy wants is to take a shower.  How many of us take one without ever even thinking about what it would be like to lose the ability to, or have the means or accomodations to do so?  I know I sure never gave it a thought, until recently. 
     Next time your pissed about waiting for that hot water, imagine no legs, no shower at all, and having to wash your hair in the sink while holding on the counter for dear life.  Imagine being forced to reason with the unreasonable...