Finding Your Way Back to the Light

I frequently can be heard (if anyone cares to listen) groaning/mumbling "I do NOT understand my body..."

I've NO idea what's actually wrong with me, neither does the medical establishment, and as much as it might be comforting to have a label to slap on my idiopathy, all in all I'd just like it to go the fuck away. Strong language definitely intended, sorry if it offends you, but to know me is to hear such words on a regular basis. A legacy from my mother, I fear.

Three years ago it was clear to me and to anyone who spent any amount of time with me that something was really wrong with my body, so I sought help, then more help (read: I threw money at the problem), and finally was told they couldn't find anything wrong with me and that 1) I needed to follow up with a shrink, and 2) if I really felt I couldn't bear the pain (oh sure, I can handle it, I just wanted to come hang out with the super-power urologist in Seattle, a very difficult two hour trip from my house in Port Townsend, and pay for the privilege), I should find a Pain Management Facility. I tried the latter, and discovered that a "Pain Management Facility" is primarily a place for recovering addicts, not for people who need help with managing their pain. This clinic (the only one in the area, btw) could NOT seem to understand that I NEEDED some help with the pain and wasn't taking, let alone addicted to anything! When I finally got them to understand, they told me that there was a two year waiting list to get in. Two years?!

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I pushed back on the doctor who sent me there, explaining I needed some help with the pain NOW. And the answer I got? She washed her hands of me, telling me through an assistant to "go to the emergency room if you're in so much pain!" The ER is why I ended up in her office in the first place! I honestly believe that because the doctor couldn't figure out what was wrong with me in spite of her mega-education and medical facilities, she didn't want me around as a reminder.

Frustrated by zero help from my urologist, completely out of funds, and with the pain increasing daily, I simply lost all hope. I questioned my sanity - WAS it all just in my head? I was in incrementally worsening pain and utterly sans hope, simply waiting to die. In the night I begged the powers that be for release, and I wrote poetry. A lot of poetry. Here're three from one difficult but still lucid night that tell the tale:

Toothed and Clawed
Three About Pain

Sonic waves of pain
- so familiar
I barely snarl.
Mantra:
Breath shallow*relax the belly*pain almost gone
(I have the trick; the secret)
I inwardly whisper
Another rogue wave breaks
- the secret drowned
in pain.

***

Dull Darkness
Icepick Sharp
Exquisite Focus
Hideous Constant
Silent Suffering
Secret Succubus
Energy drain
Life taker
Nothing else matters
Only now
To stop

***

Inside I
claw & scratch
Willing it
to stop.
I’d do anything
to get away
from the twisting
whips of pain.
I think
this must be
why
men break under torture.

Two and a half years ago I was still occasionally managing a trip to the post office or downtown, but when I began dropping to my knees in the middle of the sidewalk or my favourite bookstore due to the extreme pain, even those small pleasures stopped. Two years ago I was unable to walk without a staff upon which to lean as I crept forward, and upright was a position I could no longer attain. So I moved from bed to bathroom and back, tears coursing down my cheeks, and I prayed - HARD - every night that I would die.

A friend who lives his own brave life with chronic pain suggested I might try the family of neuropathic pain blockers now on the market, so I decided to seek help again through my local doctor. Douwe Reinstra 's a real gem, with both a medical degree from Duke and a degree as a homeopathic physician, too. AND he has common sense enough to know that he's not a God and that we're partners in my health care. I sat there and cried, telling him of my sheer hopelessness and wish to die. He was duly alarmed by my obvious pain and resultant emotional distress.
When I remembered to ask him about the nerve blockers (I'm certain I had written it down, as my brain had no capacity to hold any resident data at that point), he suggested we try a drug that'd been around for awhile; amitriptyline. This drug was introduced in 1961 as one of the very first anti-depressents, and it did a terrific job but for one small problem...it knocked people out. Well YAH..it's hard to be depressed when you're sound asleep. So by pharmaceutical standards, it's been around a long time, but only recently was its efficacy in treating neuropathic pain discovered; said use still listed as "unapproved/off-label/investigational" use, though not illegal.

I still HAVE pain, but I'm no longer house bound, and because of amitriptyline's sedative-like effect, I sleep HARD every night after my 9pm dose. I really have to push myself to wake before 9am, and 10am is more reasonable according to my body. :-)

But I was still in a deep pit of despair created by years of misery, in spite of some relief from the terrible agony, as I didn't think there was a chance that I could ever manage to resume a real life again. And I became suicidal again. Ideationally, not actively. .so I did what I always do...I turned to books. The next major turning point for me on my journey back to the light was a book, "Anatomy of Hope; How People Prevail In The Face of Illness" by Dr. Jermone Groopman.

The biggest difference between this and the usual book written by a member of the Medical Establishment is that it isn't merely another load of preaching by some self-appointed God-like Doctor (cue the angelic chorus). Instead, Dr. Groopman takes us on a journey from his years as a young intern learning about hope and hopelessness and how best to help his patients, to his own terrible illness and hopelessness and slow crawl back to into the light. More than any other single take-away from the book, I learned to tell the pain it was no longer allowed to have complete control of my life, and that I was not going to just do absolutely ANYthing to keep from feeling pain.

And day by day, step by step, I have worked my way back a LONG distance into the light. I use my art as an outlet for my frustration and pain and rage, I volunteer one day a week at the local library, about to move up to three, I have begun to get involved in a number of other local groups, and *gasp* I'm actually gaining some friends because I push myself every day to take another step toward life again.
I still have PLENTY of bad days and nights; I'm recovering from a particularly nasty flare up right now, largely brought on by the massive meltdown experienced a couple of weeks ago (see June 29 post). Stress, absolutely, without a single doubt or argument causes the idiopathy (LOVE that word...SO perfect...it's an idiotic pathology!) to overpower me. But my doctor has VERY reluctantly deigned to give me pain meds (not his fault, for the Feds are holding all doctor's, good and bad, to the fire - do NOT get me started on the fear mongering government agencies that are causing doctors to refuse pain meds to EVERYONE. The Feds can't meet their drug war quota, so they've turned to doctors and legal meds. Grrr...), so when I see trouble on the rise, I medicate it and lay low for a day or so. I made a 30 day (1x daily) supply of Oxycontin last....are you ready for this? Almost a year. Yeah. I know..I'm stunned by that, too. Over two years, the amitriptyline has had a leveling effect on my situation, and as the problem has calmed, I've been able to do more, etc. A reverse Catch-22, if you will.

So there you have my thoughts about pain, at least MY pain, for whatever it's worth. If you'd care to crawl around a little more inside the mind of chronic pain, sadly, there are a LOT of links available just by searching on "chronic pain," but here are some good blogs/articles that will afford you a better understanding of what too many of us endure every single day:
The Fat Lady Sings
Existential Punk
Living With Fibromyalgia
The Prejudice Against Chronic Pain
The Spoon Theory