Wednesday, November 23, 2011

I Feel Like I'm in Purgatory.

Sometimes I feel for all their knowledge, doctors don't get one very important fact.  How the patient really feels.  My doctor did entertain the fact that I did want to actively explore the option of a stem cell transplant, BUT, why do feel like I am getting the medical ring around.  She raised genuine concerns which is fair enough, but I like to think that I am an educated, well informed and rational person and I should be able to make my own decisions.

I get that there is a chance of mortality.  I get that there is a chance of morbidity.  I get that it might not work.  But I am still willing to try, and if it doesn't work, at least I'll know, and at least I will have tried.  Waiting, doing nothing makes me feel like I'm in purgatory, not going up, not going down.  Unknown, undecided.

All I know is right now I have to live with this disease all day every day.  It does not take a holiday, it doesn't even take a tea break, and this is what doctors don't understand.  They see you for 15 minutes every six months and then it is on to the next patient, meanwhile we the sick, fight and struggle through our everyday lives.

The other problem I may have is that, get this, "I may not be sick enough".  Seriously, I don't understand. I compared my nerve conduction studies to a patient that underwent SCT and has results published.  They are strikingly similar.  I do my very best to stay active and exercise in order to maintain my muscle mass and retain my ability to function independently.

Just so you know I swim twice a week, train with a PT who works on my balance and co-ordination as well as fitness and I practice yoga.  It is a fine line though.  Too much exercise and I cramp up and can barely walk, not enough and my muscles start atrophying.  Maybe I should give it all up, deteriorate rapidly and then be sick enough to qualify.  The other thing that could happen is I have an accident.

I value my independence and I am very proud.  My wife keeps nagging me to use a walking stick everywhere I go, and I have only just relented.  But my pride and value of independence makes me a high risk of having an accident.  At the moment I am accidentally falling over once or twice a week.  Luckily, I have so far evaded injury, but I think it is only a matter of time.

So, where to from here?  My neurologist has referred me to another neurologist for a second opinion.  I can't book an appointment with him until the referral gets to him which won't be for two weeks!  That means that I won't get an appointment until next year.  Luckily, I know a guy who is quite adept in manipulating the medical system to his own personal gain;)

As for me, do I self destruct to guarantee I meet the study criteria or do I keep trying to do the best I can.  Well, I have pretty much conquered my depression and I am a proud man.  Self destruction is not in my nature.  However, right now is the lowest I have felt in about a year.  I am feeling bitter and angry.  I have no answer on whether I qualify and no date set for anything, not even an appointment.  Welcome to medical limbo.  Welcome to purgatory.


  1. Hey Andy,
    At the very least we know you are a literary genius and your words will resonate far longer than any tremor. You respect your body more than anyone I know and more than any Doctor could appreciate. I can't see you sacrificing your dignity and integrity for the sake of fighting a nonsensical beaurocratic war that cares more for $ and numbers than real people. I've heard it said that Doctors 'have to' stay at arms length emotionally from their patients (hence calling you a patient in the first place - why not a customer, guest, client, visitor?!) so they can focus on the task at hand....and not got 'caught up' or burn out. Lord forbid they go home with a lingering thought about a human being they shared a life changing decision with that day....and are proud of having an emotional connection that means something. I guess that's why I'm a psychologist and value and admire human drive and determination like yours, and not behind a big expensive desk churning through patients by the bucket full with my sights set on that new Audi at the local dealer.
    You are an absolute inspiration Andy and you've just inspired me to pull my finger out and respect my body more...I'm one of the lucky ones and am usually too busy in my head to realise that i take my physical health for granted.
    You are changing lives with every post my friend. Don't allow the ignorance of modern day medicine bring you down to where they want you (someone to be 'treated' not spoken to at the same level). I think Doctors feel disempowered by intelligent and well informed patients.
    So power to you buddy.
    Take care, hope to see you when we come down some time
    Love to Suzie and the kids
    Langey and GG

  2. Thanks Em, I really appreciate the kind words. They definitely inspire me to keep writing. I might beat you to the punch with you coming down. We will be coming up in December for a week before Christmas. Will have to catch up then.