' The Waiting, Oh THe Waiting...ALways The Waiting '

‘The Waiting, Oh The Waiting…Always The Waiting  ‘

03/24/12

To my most wonderful, dear, dear friends, and ever constant loyal reads, I often think of you, even when my pain—too often piled upon pain, upon pain has even lessened slightly; my headache in some gladdened abeyance; waiting for that inevitable time when I am again a- grip with agony, and mind fog, I wonder how you are, and how you may be feeling, and somehow managing to survive.

I think of you during  long, and darkened night, when no chance of sleep will come, whether you may be sleeping softly, gently; I think of you at ‘bill-paying-times’, and whether you will have enough to last ‘till month’s end, with some degree of comfort, until payday, or paycheck day, the money is at last available to you.  Sometimes, I sit and think of you, while waiting for my $1.29 dinner to microwave, wondering if your pantries are sufficiently full; rather than mine, which has become the unnatural home of spiders and moths that burrow in the dog food.

I pray and ever hope for you that you be full-surrounded by the care of those who truly love you.

I often think and pray for you, my dearest friends, that somehow, some way you will be spared a leveling pain, and the suspicion—often by even professionals—that your illnesses are imaginary, and so, are scarce worth the time for a full assessment in at least some semblance of medical humanity.

I ask you to recall the hours wasted at emergency rooms; the hacking and coughing of other would-be patients; exposure to their sneezing, and to THEIR ailments, quite in addition to your own.

For, even as you may panic, or think you are having a heart attack, or dying, this is where, my dearest friends. That pure, and, and undistilled, and tortuous waiting begins; until at last your name is called to come back to Triage; there to be questioned often by a sick nurse (too often exposed—themselves—to incalculable bacteria, and viruses) no better treated than some criminal, who immediately thinks your symptoms to be falsely dreamed up.  And should your visit warrant further care, to be show to a cubicle, there to wait for hours, while all manner of insurance is taken up, copied and tallied, until some faceless, tired, and out-of-patience doctor can at last swing by, only to discharge you with a prescription for Tylenol.

For those of us who do have such illnesses as Lupus, Fibromyalgia, Chronic Pain, Chronic fatigue, and who seek a cause for such things (and more), the Emergency Room may well be your first stop, while to many of you whose formerly reliable Primaries admitted confusion, and/or lack of familiarity with ‘your kinds of pain’, too often shuttle you to Specialists.  For us, the ‘waiting game’ begins in earnest, as we must—perforce—wait o the results of test or scans or x-ray results, only to have to have them repeated as is thought necessary.

Providers and Specialists have no empathy and rarer sense of caring, making us wait, and wait, and wait in overcrowded waiting rooms, despite our pain, our weariness, our debilitation, or our fear,, until we—as a number in a Deli—is finally called behind that locked door, and placed again in some cubicle to wait.

And while I realize that other patients in the waiting room, have—themselves pain and agony as great as mine-- still I resent this ‘cattle call’, wherein the physician who has overbooked appointments so as to not miss a single chance to make money; it always seems the odds unfair, while we—as patients---sit back, with eyes closed, and try to block out the office noise.

I suppose, too, in our ravening need, and constant, endless and profound pain, despair and search for answers and treatment that we readily assign to these Specialists the contents of our very souls in willing exchange, that we—in such desperate need, forget that Specialists are not saints; neither are their practices a charity or public service, and that—to them—we are a but a calculable resource, no matter how much we may believe that our own distress may take precedence.

And so, in that part of pain that rises until it is beyond bearing we seek, and hope, and secretly demand bespoke answers and effective treatment.

When—in fact—the lamentable truths are; while our Providers, Specialists and the like, to us, are separate individuals, separate personalities, to them, and to their clinics, we are faceless, almost nameless, in our massed hundreds.  And so it is quite natural (with few exceptions), that a ‘conveyer belt ‘mentality exists.

Why the, do you think that, after a nurse has placed you records I that rack near the exam rom door, which is shut, there is a several moment’s long pause after they’ve been picked up by the Specialist, before he or she comes launching through the door?  It is to give them time to remember our names, with a brief glance at our complaints, and subsequent results of testing, of or current treatment,

Are nor our complaints as valid as other’s; for it would seem that if we have the ‘illnesses that have no face; we appear almost too well to warrant treatment?  And so, to better make my case (besides my truthfulness, or word of honor, which is quite unrealistic in these days of rampant lies, for regrettably, the medication that provides some relief, is the kind most abused out on the street), the preponderance of evidence must also fall on us, further taking time for scans, lab work, and any more convincing test results which to better obtain for us those medications that make life a little more bearable.

And while I think I understand all this: the waiting, waiting, waiting, while often I am doubled-up in pain, the waiting room seems to me to be some greater instance of imagined torture, especially when my Pain Doctor’s reception staff do not give us a second glance, but can be heard gossiping about their boyfriends, while audibly sucking on giant, super-sodas.

Actually, the shortest part of every visit is the time spent with the doctor, who sees me for maybe all of ten minutes, to finally give to me those life-sustaining prescriptions, which is the sole reason for my visit, anyway.   I know that; He knows that.  We both know that.  It is like the childhood game to see who could refrain from blinking first.

Meanwhile, from the lateness of my visit, the heat outside, the grindingly-full waiting room, filled with too many patient’s voices, and two televisions whose volume is set to high, the exhaustion, the inevitable pain, that over-loud ticking of an internal clock that signals that the day has somehow been thrown away.  In fact, I find it both ironic and regrettably hilarious that we are called ‘patients’, as, in those circumstances (and others), I am not willing to be made more patient.

What about—for example-Wal-Mart, wherein each ‘super store’ there’s perhaps fifty registers, but only ever four open?  Or, the wait, and wait for prescriptions?  Or, the repairman, who promises to come out somewhere between eight AM to five PM, and then still does not make an appearance until another day? Or, of any time we are made to dandle upon someone else’s convenience, not our own?

When did OUR time cease to be meaningful?  When was the very last time a human, or an agency, or a business attempt to establish, or change an appointment time, to, “Whatever time best suits you?” Or to have return telephones calls made to establish or change an appointment made at other than an ungodly hour, well-before one’s first coffee of the day?

I know that I am disabled.  I know my days are largely free of obligation, being full—instead—by trial, pain, and weariness.

Whenever possible, we NEED to reject the whole, ‘patient’ mentality, in trying to make things more convenient for US.  For even now, if I should make an appointment for 2PM, and, in truth, it would matter not if it were indeed 1PM, or 3PM, nevertheless, that is the time I have allotted to myself for that activity.  And in in doing so, mold time more specific to my needs, or whims.

For I want them to acknowledge my needs are as great, as everyone else’s is to them.  I want my migraines to be attended to; my nightmare and my exhaustion addressed, and this limiting, devouring pain to be successfully treated, returning to me some welcomed sense of normal life.

To Social Workers, so eager, knowing exactly how to make my life so much better, I ask them please do not annoy me with the promise of County programs that now are out of funding; or in some woven ballad, promise me the sun, and moon, an stars, when I cannot even manage to even go across the street!  And so, even Social Work becomes a game, wherein the workers/players are mandated to cast a jaded eye upon all that is no different from the former visit. Much like points checked off upon a list to ensure a paycheck for themselves.

For I think of you often, my very dearest friends and gentle readers, and, as always, wish for you days of lessened, or of ‘no pain’; quiet days, in which your most unfortunate ‘waiting times’ are filled—instead by quiet prayer, and hushed contemplation during which with both clock and calendar reclaim some better sense of Self; evenings spent, surrounded by ones who truly love you, and who genuinely care for you; and nights of naturally tired, and unencumbered, balmy sleep, made blissful, and kept safe by watchful and protective angels.

I love you dearly,

‘Zahc’