Well, it's been rough, physically, for a while, so I wanted to cry on the
list's collective shoulders--and maybe get a word or twho of sage advice:

About the time the war started, my pain and spasticity level jumped markedly
higher.  A visit to the pain specialist garnered an expensive shrug of his
learned shoulders and a glazed look when I asked for a new modality in
treatment.  He wouldn't consider titrating my meds upward either--even
though I've been at the same dosage on all since August.  There was
half-hearted discussion of intrathecal treatment, he handed me a few scripts
and said "see ya May 7".

Since my boss suffers horribly from fibromyalgia and migraines, he's been
very receptive to the idea of my working from home when I'm not up to
driving or sitting in an office chair.  His boss, THE DIRECTOR, is not so
inclined towards understanding and thinks the ADA was created just to annoy
him personally.

The net result on that front is that I have some latitude (ex. flexible
workplace/hours), but must be very careful to avoid even the appearance of
not having my nose placed firmly on the grindstone at least 40/week.

As far as the pain is concerned, I am experiencing two "types" of pain in
two disparate areas:

Firstly, the most acute pain I have is limited (mostly) to the sacro-iliac
joints on both sides of the spine (The S/I joint is where the last vertebrae
connects to the sacrum in the low-back).  This pain is usually "managed" to
a level where I can perform sedentary "office" jobs, but becomes apparent
within seconds of starting a household chore (e.g. laundry, loading the
dishwasher, bedmaking, etc.--essentially any activity that involves even the
most minimal level of repetition).  It is accompanied by strong,
breath-taking spasms that only stop when I finish the chore.  Usually
there's a resolution phase of several minutes rest before the pain and
spasticity decrease to the point where I can move about again.  The strange
thing is, it could be either the left or right side that spams.  There seems
to be no way of knowing which side will hurt, yet it's rarely both sides at
once!

The secondary pain is a strong "flu-like" ache that is moderated somewhat by
the opiate pain meds, but only to a small degree.  I basically hurt "all
over", with some elevation in pain at the major joints--particularly wrists.
Direct heat seems to be the only non-pharmacological therapy that offers any
relief at all.

My level of physical activity has diminished to almost nothing.  Last summer
I was at least able to get in some fishing, walking, swimming and stretching
in the pool.  Now, even normal household tasks (chores) are becoming too
painful to perform.   Note that active and passive (assisted) stretching is
becoming painful.

I'm not averse to exploring non-traditional therapies, as long as they are
grounded in good science.  If something can't cut the mustard in a
double-blind study, I can't afford to waste the time.  I guess that's why I
have clung to traditional medicine for so long--in most cases, efficacy and
safety of virtually every conventional modality has been proven in the
crucible of placebo vs. the Real McCoy.

Visits to my family and pain MDs in the past week have offered hope and
despair.

On the hopeful side:  The family doctor together the beads of my complaints
and said, "Every symptom you've described to me points to a subnormal level
of testosterone."  With that info, I had a bunch of blood tests done
yesterday and I'm waiting, nervously, by the phone--praying that she's
right.  It can be resolved by application of a "patch" or gel, with
virtually no side effects (you can get into trouble, though, by using too
much of a good thing--in this case, at least).

The disappointment came yesterday when my wife, the pain doc and I had a
little tete-a-tete regarding his long-term theraputic plans.  There are
none.

She and I were trying to get a prognosis we could wrap brains around when
the light bulb went off in his head and he asked, "Are you asking if I am
trying to 'cure' Kyle's pain?"

Our reply, "Well...yeah...like, isn't that the general idea?"

He looked shocked and said, "I thought you knew we're only trying to
'stabilize' Kyle's pain.  There is no cure for the level of stenosis in his
spine."

Well, so much for the idea of being able to play ball again in the yard with
the kids...

So, having given that update, I was wondering is anyone could answer, or has
had experience with, the following:

1)      I'm a candidate for the Baclofen pump, even though my spasticity
really only manifests itself concurrent with pain.  Who on the list has
experience with the pump?  Positives?  Negatives?

2)      I'm exploring the possibility of using the pump both for
administering baclofen and pain meds intrathecally.  Any experiences there?

3)      Other than Ken (whose story I know all too well), has anyone gone
through the delightful experience of moving from full-time, professional
employment to full-disability--particularly as a Civil Servant?

4)      Bobby, what can you tell me about the use of Provigil to counteract
the somnolence brought on by opiate pain meds?

5)      Is there any causal link between CP and low testosterone levels in
males? (I know there is a link between opiate use and same).

6)      Has anyone benefitted directly from the ADA?  How were you
accomodated?

7)      If any of you have young children and are experiencing "loss of
function", what strategies have you found to pick up the loose ends vis-avis
playtime, increased housework, etc.

I'll probably think of more things later.  Thought the list could use a
CP-related thread for a while. LOL

Kyle