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....