MPNforum Magazine

(Cleaning up some of last year’s ‘cultch’ while adding more)

It’s twenty twelve now and New Year’s Day is over and past. This should have signaled a new beginning or at least a renewal for doing some things I needed to do. One thing sorely needed is to clean out the closets of my life.with new attempts and renewed hopes for removing the outworn ‘impedimenta’; the heavy baggage that impedes my feeling good about myself.

Like most of us, I tote a lot of useless, often toxic baggage.

Here I’m talking about my false sense of being
put upon, my illogical negative feelings toward dedicated MPN players
who don’t fit my concepts of what they should be.  There’s been a sort
of grudging envy masquerading as disgusted superiority when those I
unfairly resent are lavishly thanked and praised. Totally illogical,
but somehow I feel as if they won something by playing by their rules
and I lost something by default, A sort of game that there’s no place
for among us here.

Once again I ate some black eyed peas on New Year’s Day in hopes that
an old Southern traditional recipe for good luck throughout the coming
year might hold true. (FYI, peas bring small change, collard greens
bring folding money and hog jowl assures humility.)  Last year’s black
eyed peas were only partially effective, maybe because I couldn’t
stomach the required hog jowl and collards. Uggh!  I reckon that
fulfilled hopes and good luck are always a mixed bag. We win some and
we lose some and it has been thus forever.  I’ll not make any
resolutions this year. Maybe I’ll review 2011 and figure out my
batting average.

As it must to everyone, death and transition into the “great perhaps”
came to beloved relatives, dear,friends, colleagues and many known
well, but only through the anonymity of the www. Maybe the “perhaps”
has been made “certain” for them. I yearn to know beforehand what they
know now, but I don’t even know the questions to ask.when I venture
from biology to spirituality. I’ll leave it there with my faith
partially buttressed with a vague understanding of the laws (subject
to change) of conservation and interchangeability of energy and mass
and the immutable changing of the seasons, caterpillars and
butterflies and other “rational evidences”. For me there is
evidence-based hope wIth belief in God and in evolution. I won’t
meddle with what’s in it for you.

In twenty eleven some of our loved ones, relatives and friends died
owing to an MPN, others with a concomitant MPN, the majority with
neither. Whatever the cause of death, old man winter’s harsh
euthanasia at the ‘crepuscule’ of our alloted time is particularly sad
even as it might be a release and relief, because for evermore the
loss is tied to bittersweet holidays and makes us unhappily reflective
during others’ time of joy….in a way pointing up the incongruities
ofholidays and holydays. “A green Christmas makes a fat churchyard”.
…lugubrious old New England proverb.

December temperatures
hereabouts were in the 70’s. Happily, other areas were “white with
snow”. Not sure about global warming and all that, but I reckon luck
and realization of hopes really is a mixed bag.

MPD as Multi-Personality Disorder? Continuing to muse about things I
know nothing about, I wonder if there is a distinct  personality
component to MPN. I mean a sort of ‘polypolar personality’ as a
specific clinical symptom. I am not a psychologist nor a psychiatrist,
and certainly no philosopher so I’m free to speculate on things beyond
my ken. Retorts expressed by MPN patients can erupt suddenly and
explosively in an illogical anger …and repeat persistently?
Although hurtfully misdirected, particularity toward caretakers, the
rage is often there and reflected in our conversation at home and also
on line though much less frequently. I wonder if anyone has studied
this objectively and not dismissed it as simply “what would you expect
from any sick person?”  I suppose I could look it up.  What me!  I’m
a doc. :)

Was December’s surprising incivility among some list
leaders followed  with an equally rapid repair of relationships that
leaked out onto our computer screens a response to devious shifting of
transient loyalties or to piling up of the year’s problems and
stresses or to MPNfatigue ….or is it a part of MPN, itself?  Anyway,
has anyone searched the internet re explosive anger as a clinical
symptom of MPDisorder or MPDisease or MPNeoplasm?

Med. School is to a degree a trade school.and although we sure need
more of them, you don’t learn much of music, art and great thought
there. Some schools are better at it than others, but you better get
your polish elsewhere. I have a thin veneer of micro-sophistication
now, mostly by marrying above my station, but the country boy’s cockle
burrs remain stuck to my clothes and in my hair. I have an awful lot
left to learn and you MPN folks have been a great help in furthering
my education, So many of you write well and thoughtfully. Zhen has
tried to teach me the rudiments of good English and at least I better
understand the worth of it. I once disparaged and tried to make fun of
art, classical music and great thoughts in ignorance of some of things
that that make us different from animals, I’m ashamed of my ignorance
now and try to make up for it, Columns like this one don’t go very fa

For me the best things about our MPN networld are the friendships and
mutual support. Some of the “science” our dedicated ‘net studyers’
extract from the internet is good for us to know and await practical
confirmation by professionals so as to do no harm.This takes time that
all too many of us didn’t have. “They also served.”  For the rest of
us remaining and being added daily, I believe that “net medicine” is,
or should primarily be about MPN news for us, not MPN research by us.
IMO, for our MPN education  we are best served with accurate
thoughtful reporting while spreading the word and as is possible,
making financial contributions. Net references with just a modicum of
direction lets us keep up for ourselves without patronizing
superiority.  Anecdotes if similar and repeated, may lead to our lists
adding some enlightenment, but generally not the same as careful
professional clinical investigation.  My bias showing?

   Speaking of ‘anecdotal research‘ I have diabetes and am plagued
with greasy-waxy skin over the palms, fingers and backs of my hands.
This is not relieved with emollients, dewaxers nor hard scrubbing with
soap and water —  not an uncommon sign in diabetic patients.
Since diabetes and MPN exhibit some similar signs and symptoms, I
wonder if any of you with MPN, but not diabetes have intractable
greasy-waxy skin. I’ve not read any references to this, but I’m a
wonderer, not a researcher. :)

Enough already?  Naw!  Already too much of my misplaced logic, very
much like the logic of a fawning gratuitous gift of a raw turkey to a
family at Christmas that only has a hot plate to cook on. As usual I
depend on my net friends to forgive this basket of boring blather
that’s all about Me, Myself and I and naught about you, yourselves and
thee.  Best,  Arch

(p.s.)  Hope my friend and editor Zhenya Senyak thinks I’ve left my
corner and has put his editorial scissors away. If he hasn’t I’ll
demand that he leave this postscript alone. I want to acknowledge with
brotherly appreciation and respect, his vision for a new direction in
worldwide NetMPN affairs for the laity, if patients and by extension
their caretakers can ever be termed laity. In spite of the multiple
restrictions of a serious MPN he has brought a new and brighter day to
our side. Zhen has gifted us with professional reporting that is
beginning to change our divided and less effective fiefdoms into an
effectively united whole. Not as separate, but equal, instead as equal
and not separate.  A.

Take me back to the Contents

© Dr. Arch M. and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Dr. Arch M. and MPNforum.com with appropriate and specific direction to the original content.