' On The Necessity Of Having A, " Me Day " ! '

'The Necessity Of Having A, 'Me Day'

Aug 25 2011

08/25/11
To my dear friends, fellow suffers, and to all of you who have so very kindly encouraged and supported me in reading my Diary entries, and making much needed comments, both of encouragementAND criticism, I would very much--today--like to share with you something I have but recently discovered, but have found to be far-reaching, and most profound for both my physical, and mental wellbeing, that, I am surprised that it had not occured to me before, while, many of you will have doubtless discovered it, and to you, I laud your insight and your strength of purpose.
It is--in fact--the necessity of declaring for yourself, and establishing with little or no compromise, a , 'Me Day'; it sounds so simple, doesn't it ? I had earlier discussed this with my MDJunction friend, '1magicman', and now, wish to discuss it with you, my dear, dear readers. For my last, 'Me Day' proved to be so wonderful, that--today--I am having one again. Of course, being on disability, and unemployed, and alone ( except for the best dog on the planet ), perhaps I can afford to indulge in such behavior, but, no matter your circumstances, your family, your children, your pet, your pain, or your jobs--should you have them--, or, your spouses, you can readily modify your time, so that, you--too-- can enjoy at least a 'mini-Me Day'.
First, upon looking at the calendar ( which will be your friend ), I noticed that I had no obligations, today, no doctor's visits to worry about, no one scheduled to come over, in essence, a 'blank day', I decided to try to make of it, a quiet, peaceful, and contemplative one, rather than to get caught up in obligations, worries, and the often pre-ocupation with my pain, depression, and agoraphobia. Its surprisingly easy to do, if you will but do it, to the fullest extent that you can. Here goes, my wonderful friends, and readers:
1) Sleep as late as you want; should you have to arise early, either for bathroom calls or to take medications, as soon as you have, retire again to bed, until you naturally wake up...no matter how late in the morning it may be; for remember...this is , 'Your' day, not anyone elses'.
2) I slept in my underwear, and intend to wear it all day, for, should, later, I desire a nap ( another dictum of 'Me Day', I don't have to keep changing clothes. Should anyone actually come to the house today, I can always tell them to wait, or, close their eyes, while I put on a pair of walking shorts.
3) Pay no attention to 'clock' time; eat, when you are hungry, by being hungry, no matter how you may feel otherwise, it will help you find the strength to prepare something to eat.
4) Turn the television off, and keep it off; while I understand some people must watch their soaps, or, Jerry Springer, or news, I find a day without television to be enormously liberating. Besides, I detest the Jerry Springer show for its neverending parade of loud, violent dysfunction, which only disturbs, and disquiets me, as really does the news. For unless I want to keep track of an oncoming hurricane, I can safely manage a day ( or two ) without the voilence, the disasters, the people and animal abuse, the killings, and the global uprisings, frankly--about which--neither you nor I can do anything about.
5) And while I admit this is habit, do NOT feel compelled to drop everything to run to answer the telephone just because it rings; while I have a land line, I also have 'caller I.D.', and can see who's calling; it is rarely dear friends, as they have been told that, today is a 'Me Day'; that does not mean that if a friend calls, I will not answer it. But, how many telephone calls are from 'Unknown Callers', potential scammers, political bombardments, or, just, unheard of 'charities' who want money, etc. They have only distracted and upset you, and, have wasted YOUR time. Remember, this is, 'Your Day', and it is as presious as gold. This is especially true of cell phones, which--really--just make you too available to others.
6) Should you be so inclined, offer a sincere prayer to whatever Deity in which you believe; offer up thanks, gratitude. And ask for direction, guidance, purpose, help, though, I found to my dismay AND shame, that too often, my prayers were as Santa's wish lists; while it is perfectly O.K. to ask for intervention, and pain relief, and for the strength with which to cope, asking God to please give me a grand piano, a Lincoln Town car, or, for a Lottery win, eventually, seemed--somehow--to be disrepectful, unnecessary, and a colossal waste of BOTH our times; and while I will hardly admit to being perfect, as certainly I am not, I found it more fullfilling to ask for forgiveness, and if anything else, to pray as Solomon was supposed to have done: to be able to discern an honest heart. If pain in your knees prevents you from kneeling, the really neat thing about prayers is that they can be said quietly, and, anywhere you happen to be.
7) Spend more time--today--with your children--if you have them--and your pets, who love you, even when you, in an agony of pain, are short tempered, grouchy, and would be left alone. For 'Me Day' will involve a lot of time on the carpet with my dear dog, just so I can tell her over and over, just how very much I love her, and of how very important she is to me, and to my life.
8) Whenever you feel like taking a nap, take it, with no excuses, nor explanations; only you know how you feel, and a nap at the right time of day can be wondefully restorative.
9) Forget about yesterday, and ignore tomorrow, for yesteday is past, and tomorrow is an unforeseen mystery, about which you can make little prediction...so, for your 'Me Day', ignore it.
10) Remember, this is your day, after all; you have EVERY right to enjoy it. Have some fun !!!!!!!!!!!!! Write or e-mail a neglected dear friend; do a crossword puzzle, light candles, or take a lo-o-o-o-ng soak in the tub.
11) Remember, the day will pass as all days do; this one happens to be 'Me Day', not 'Her Day', not, the 'Neighbor's Day', but your's. Absolutely keep the day free of obligation, and make NO promises to anyone.
12) Finally, as the day closes, YOU decide when it is time to go to bed. Go as early or as late as you'd like. You are not chained to clock time, not on 'Me Day'.
Now, while I am not uncognizant that many of my dear friends and readers have jobs, have children, families, spouses, numerous things that might--at first consideration--cause you to tell me, "Well, that's all fine for you, as you live alone, are disabled, and--as such--can afford to indulge in such self-gratification such as a, 'Me Day', please allow me to explain that I well understand this, once having worked fulltime at night, while trying to care for my elderly and ill mother, and father, and that it seemed that my days were often eighteen hours long ( and, yes, some of them were ), and that I was tired beyond measure ALL the time, and living in a pressure cooker besides, I still ( for I had to ! ) managed to carve out little mini 'Me Days' for myself. This is how I did it, then.
1) The bathroom is your best friend, for solitude, for aloness, for absolute undisturbed quiet. Generally, nobody bothers you while you are in the bathroom; and so, each evening when I got up to prepare for work, I took my cigarettes, ashtray, and a VERY large cup of coffee into the bathroom. Sure, my major intentions there were completed in scant minutes, but I dawdled there, drinking my coffee, having a couple of cigarettes, as I paused to regain clarity of mind,and strength of purpose. Call me O.C.D., but, I even had a large calendar posted in the bathroom, and in the undisturbed quiet, could 'plot and plan' all I wanted; if I stayed there for twenty, thirty, or, even forty minutes, I had sufficient 'pre-work' time to have time to myself. And, don't worry, you'll not fall in, though your rear may get a little numb; it was the price I paid gladly for just that little 'Me Day'.
2) Although, on the way to, and from work, I passed and repassed a common retention pond, I noticed one December, that it was full of water lillies. And so, one day, I made of it a point to take my camera, and pulled safely off the road, there to slog-around that pond, even getting mud on my shoes, while I circled it, taking picture, after picture, of the still, black water, which reflected the sky and the clouds, and of those water lillies, which were glorious, and all, a soul-restorer. Film cost a lot for me, as did the processing, so, I had to try to make every shot count. That only meant that I stayed there longer, in the cool, early morning weather. The coldness bothered me not one bit. Nor did my wet and muddy shoes. And, while this was back in December 1995, I can still recall the peacefullness of the place, the stark beauty--and this is MOST important--the stillness of my mind, fatigue long forgotten, as I witnessed in that pond, I believe to this day, the simple beauty, and truth of God, in nature. Those two hours out of my routine affected it not one bit. But of that particular, mini 'Me Day', I shall always be grateful, and will never forget. For I fully believe that it is with honesty, supplecation, that a state of Grace is attained, leading to Redemption, which cannot help but to reassure, and restore the Soul.
3) It is of paramount importance, in declaring 'Me Days', we pause, amid the whirlwind that life is, to remember that we--so far as I am aware--have only ONE mortal life, and that how we treat ourselves, is as important as how we treat others.
And, my dear friends, fellow-sufferers, and kind readers, I can fully attest that in declaring this to be a 'Me Day', I am quieter, less preoccupied, more at peace; I feel calmer, better, and, in fact, in less pain; my mind is not racing, and I have not entertained the self-pity, and the self-detruction that normally I might. Think, please, of what a miracle it is to just 'Be', to relax, and to breath regulary, and, feel better!!!!!!!!!!!! And it doesn't cost a dime. Its free for the taking, but only if you will.
And so, to all I wish with all my heart, many, many restorative and grand, 'Me Days', and a freedom from pain, distress or despair to such a state of wonderful calmness and joy. All my love, 'Zahc/Charles'

or Cancel

 

' My Life, My Pain, My...Dog.....'

'My Life...My Pain...And, My Dog'

Aug 24 2011

First of all, dear friends and readers, please allow me to preface any remarks I may make, with the following disclaimer : 1) I would like to make very clear that--in general--I like most pets, whetherthey be dogs, cats, gerbils, hamsters, or fish.
I say, 'in geneal ', because I still cannot fathom why anyone would want to make a pet out of a python, or an iguana. And I am sure, I will receive a lot of complaints from those individuals who DO own them, and I suppose, to each his own. Sometimes I have seen a person holding aloft a python looped casually about their shoulders, with arms outstretched to show just how long they are. However, you cannot quite convince me that in--in the snake's slow undulations--that it is not doing so to be made more comfortable, but that the python is merely searching for a way to wrap-around its owner's necks, to suffocate them, and that the snakes are merely looking for a convenient food source.
I feel-to a lesser degree--about those who chose to own igunas; what I have witnessed--too-is a somewhat deviant joy in hand-feeding the creatures live mice. I understand that they are bought as food, but to take delight at watching the terror of the still-living mouse makes me ill. Both of the aforementioned animals are cold blooded, have no apparent emotion, except to be fed.
And, now, having angered readers with my own opinions, I would like to turn my attention to other things.
'My' dog, chose to adopt us ( my late mother and me ), in the middle of November, 1999. We had been feeding a stray cat, who dissappeared with the arrival of this dog. We found that the dog was eating the cat food, and camping out the night in an open shed my late father built in 1979. This 'dog' had been most horribly abused, and then either dumped to roam free in the neighborhood, or--and this is worse--had voluntarily left her previous home; and it takesa LOT of abuse before a dog will abandon its position. To say that she was a complete mess is an understatement; you could see, and count, her backbones, as well as her ribs; much of her fur was gone, and she was extremely fearful.
I hadn't wanted a dog; I did not NEED a dog, but I nevertheless decided to keep her, as the alternative--through Animal Control--would have been to take her away to be destroyed, and, somehow, this I couldn't countenance.
Since my mother passed away in 2008, our little 'pack' has shrunk to just us two. And, I have long since given up any notion of who should be 'Alpha', and who should be 'Beta'.
What I DO know, is that I have become more and more ill, and--often--in great pain, it is to she upon whom I rely for companionship, company, and...solace.
At fourteen years old, she was slowed down considerably, and now has her own health issues, such as arthritis, for which I give her medicine, even as I pause to take my own. For-as when my late, ill father was alive, the entire tone of the house changes, to take on the feeling--almost--of a 'sick' room.
And, friends, one of the things I absolutely dread, and hate, is when--in giving her some prescribed medications, I have to hole her down, pry her nouth open, and then try to ram the pill as far down her thoat as possible. Then I have to lift her head--while she is desperately trying to get away--stroke her throat to get her to swallow it.
Of course she fights to get away; I would too if someone tried to ram a pill down my throat.
On these occasions, I find I keep repeating to her how sorry I am, and that I love her so much. But...it surely must confuse her, as I am the man who tries to take care of her...not hurt her. As soon as she can, she leaps up, and runs to the solace of the back bedroom to be left alone; I have learned to give her this time. Though, after a while, I hear her laws upon the wood flooring getting louder and louder, until she sees me, and curls up on the rug beside me; as I may have mentioned, it is a forgiveness that I have not earned, and do not especially deserve. An I would hate to revive in her memories of that awful, previous life she had.
At fourteen, she now has a cattaract in her right eye, and is probably blind, but---my dear friends and readers--the cost of having them removed is about $3,500.00 and eye, and during the procedure, the pet may not survive it. And since I am on a disability income, I cannot possible afford it.
Presently, she is curled up on the rug in my computer room; often, she will lie across my oxygen hose, I think to know whenever I move to a different part of the house.
Its poignantly funny, and saddening, that, snce we both have aged, we both snore ( though, as a lady, she would never admit it ! LOL ), we both have uncertain kidneys; in fine, that we BOTH are slowing down, and I fear the future, or--at least--a future without her. For--selfishly--I will then be inescapably alone.
Even when my pain is running high, I still try to get down on the floor to 'play' with her, and to scratch her ears and head, to tell her ' what a good, good girl she is, and that I love her as I love few others, for she has never once lied to me, stolen from me, cheated me, nor betrayed me, as some 'human' friends I have, who have done.
Often I look at her, as I believe we all do, wish she could talk; to tell me about her past, whether she likes it here, and, I guess--most importantly--whether she loves me.
And while her bark is getting rusty, like the kind of barks older dogs make, still, she barks to warm me if there is something odd outdoors, to also protect me should someone ever attempt to break in and try to harm either of us.
I happen to have an intrument of defense here--should I ever, and most regrettfuly need it.
I feel as if she truly knows when I am in pain, and to what extent; that is when she tries to comfort me, and BTW, I FIRMLY believe that when a dog is happy, that it can smile, and laugh, even; and it is those rare smiles that gladden my heart, and...to some degree, lessen my pain.
Every night, when I finally drag off to bed, she enters my bedroom to sleep beside me on the rug.
And, although I am disability-made poor, I would not--in truth--take a million dollars for her. And I feel that--it is up to me--to try to take care of her; keep her safe; provide her with plenty to food and water, and to take crae of her needs, and provide a comfortable home for her for as long as she lives.
In conclusion, dear freinds and readers, before the night is over, I would urge you to infold your arms around YOUR pet, hug them and kiss them, and tell them how very much you love them; for I believe they really need to hear that once in a while.
For, I also believe that how we treat our pets in no small way reflects upon how we treat our spouses, our children, and...each other.
I wish, hope and pray for many, many 'well' days for you, and peaceful, restortative, and gentle nights. Love, 'Zahc/Charles'

or Cancel

' So What Do You Do When The Caruesel Stops ? '

'So What Do You Do When The Carusel Stops ?'

Aug 22 2011

08/22/11
Please forgive me tonight, dear, dear friends, for I am at somewhat of a loss for words...though, in time, I hope they will come. Its almost 8:30 PM, and I am worried, slightlyconfused, hurting--as always--and not a little angry.
I returned home--this afternoon--from the 'dreaded' visit to my PM, pretty much as I had expected: weary, sweaty, in pain, thirsty, and with a slight appetite, which could also be construed as nausea, BUT with prescriptions in hand, which--for me--is really the only reason I see him. He may well be reputed to be among the best, but I have only found him to be draconian, didactic, humorless, intimadating, and--frankly--just a little bit threatening, about which, more later.
He nonchalantly, even unintestingly dismissed my MRI report, stating that there were no apparent changed from last year, and disavowed that I had 'Scolliosis', even though I knew it had formerly--by another physician--been diagnosed; and about my lab work, he said nothing at all.
When he first entered the exam room, in a rush, as always, I tried to get to my feet to shake his hands, requiring that I grab the edge of the exam table to try to pull myself up; to this, he asked if I ever got any exercise. I said, "Yes, three times a week with my Phsysical Theapist." to which he said, "That's not enough !" And told me that my 'hamstrings' were weak, and that I could never to hope to get better with lots of exercise.
Now, I had arived to his office, barely able to walk, even with my cane; with socks and sandals on, because my feet were 3+and pitting, and that I could not even fit into my shoes; and, dragging with me my portable oxygen. I thought to myself, "What a wonderful, and amazing disguise I had contrived: the most ideal 'wounded bird' look, just to fool them into giving me medications."
When I told him that I thought that--perhaps--I had lost twenty pounds, he said, "Great..now lose some more." He also stated that I was relying too much upon my Diluadid.
Then, before he breezed from the room, he said, "we'll see how it goes until your next visit; ( and THIS chilled me ), meanwhile, I will renew your meds....'this time'."
Now, my dear friends, please do not mistake me, for I feel that I do not abuse my medications, although I will admit that I never 'pre-dose' to prevent 'breakthrough pain', waiting--instead--until I am gripped by pain, and then, have to wait, often in sheer, teeth-grinding agony, until the medication takes effect; and...sometimes...yes, I have been known to take two Dilaudid at a time.
But last month, and the month before, he prescribed for me: 1) Dilaudid 4 mgs, four times a day, and; 2) Morphine Sulfate 15 mgs, four times a day. That's four pills--each--a day, for thirty days, thus=120 of each. Never mind the fact that both last month and this were thirty-one days long. A mere complication.
I had dutifully taken in my little pill bottles to show him, which he merely grunted at, when I got home, and actually counted them, I found that I had 21 Dilaudids, and 22 Morphine sulfates left, all well and good.
But when I telephoned the free pickup and delivery pharmacy I use, I fould out that they would keep today's scripts on file, as they could not be filled until the 31st of this month. HUH ????!!!! That means that although I now have to wait nine days before they can be filled, at the prescribed dosages of four of each a day, I now have functionally, only five days' worth of medications left. It doesn't require rocket science to figure out that I will have four days, with NO medications left.
And so, my dear friends and readers, it inescapably means that--in order to survive, and by which I mean to 'just' survive--until August 31st, I will have to bear unbearable pain, by having to cut my doses in half, rather than to run out, and in the remaining four for five days, risk utter agony, PLUS, the beginnings of withdrawal. Let's see...which will cause the most pain ? Or, should I go into withdrawal, will it land me in the hospital, any hospital, or might it even kill me ? Please forgive the ' Drama ', but I actually do not know; nor, do I know how I will cope.
I am so tired of it all, and too giddy from one too many rides on the carusel. How long does it take before it seems that it is the brass ring that is moving ? And when--finally--the carneval shuts down for the night, and, one by one, the strings of lights go out, leaving the gaudy Midway in shadow, only the night breeze, and the stars--above--remain. Memories of stuffed toys, and cotton candy too pass into and away into the night.
My God, my God...how shall I stand it ? Will even cutting the doses in half harm me ? I guess we shall see. I am too accustomed to the 'regular' dosages. And, I cannot even imagine the pain.
For if Disney is correct, and, " A wish is a dream your heart makes ", please, please wish that the next ten days pass quickly.
As ever, love always, 'Zahc'

or Cancel

'Why Do The Uncertainties Of, 'Tomorrow ', So Affect The Certainties Of Today ?'

Aug 21 2011

08/21/11
My dear, dear friends, this Diary entry ( as I hope all of them are ), required so much forethought, and inner verbalization to enable it to be put to paper. I am still having great difficulty in wording it, although to many, it may be a subject considered most commonplace, and common, as maybe to have many say, "So what"?.
For, tomorrow, I have an appointment to see my PM; and it is a thing I dread, even though I know I must go, forsaking all other occupations, to take to him recent lab results, and MRI findings that he demanded I have done, as he as 'tired' of just "...continuing to throw medications at a thing", without some demonsterable proof to justify putting in my trembling hand, those two, little, grey pieces of flyaway paper ( prescriptions of opiate medication), so that I can be sent home, again, scarcely the wiser, though--it is to be hoped--that with these results, that somehow, my multiple diagnoses, and nearly unending pain will be at last validated; so that, yet again, he can "throw medication at it."
In many ways--although he is reputed to be a very good PM--I dislike his perfunctory, and dissmisive attiude. And, while I am disinclined to lie to him ( as, doubtless, he would see through it, having heard so many lies ), and in some weird self-approbating way, I believe that my many compaints should be taken at face value, and that what I complain to him about should, at some level, be sufficient for treatment. And in this, I am naive.
For I know that he has dealt with all the combined deceit, lying, game-playing, substance abuse, addiction, those who would seek medications ofr their 'fun' value, I am--nevertheless often shocked by his utterly ruthless candor, and in his usual offers that, should I not be compliant with ANY of his wishes, I am most welcome to go elsewhere. And while there are many other 'self-described PM's out there, flitting from doctor to doctor is not viewed lightly, nor does it improve my predicament.
I KNOW I must go, tomorrow, but I am afraid to go, to get out of bed, even, and to get out of the house. Perhaps it is the Agoraphobia that renders me so, and perhaps that is true, as if I did I not NEED the proferred meds, I would cancel out, and stay home. Apparently, the mere sight of me lumbering into the office, unsteady even with my cane, with feet too incontestable edematous ( 3+, and pitting ), so that I cannot wear or tolerate shoes, and must--perforce--stumble in in socks and sandals which are already too tight; or of my portable oxygen and cannula to help me breathe, or of the attending pain which zig-zags all over my body, is just not quite enough for him. And...Heaven help me should I forget my debit card to pay my co-pay: that--alone--would get me shown to the door, as it has already done so once before.
I guess--in my need--I keep forgetting that, after all, this is a business, not a charity, and that the front door to the office is NOT the entrance to Llourdes. And that, I am not greeted my welcoming angels, as--frankly--the reception staff are to a person, healthy, and look upon us, the patients, as whiny, drug-seeking , or, ( Disability seeking ) sub-human, free-loading idlers). I am not so paranoid, or delusional, that I cannot see it in their manner, or in their eyes, for I have beheld this behavior before.
We are not seen as people, citizens, with our own sagas, and our own histories, but rather, as herdable commodities to be dealt with, dispensed with, and sent home. They, and well as his nurses tend to forget that WE, as patients keep their doors open, and pay their wages. And AS such, it is we who are the employers, they, the hired hands.
And, my dear friends, on other occasions, and at other doctor's offices, I have felt compelled to mention this to them. And while they hate me for it, it is an undeniable fact that they should never forget. Nevermind being treated without kindness, or even reasonableness.
So. I must confess to you, my dear readers that I am already dreading tomorrow's visit, which should be a waste of my time, and thought, for it is like having stage fright five weeks before 'Opening Night".
My day--today--from the start, was quite unremarkable; In pain, I slept but poorly, and taunted by a thousand dreamt horrors, so that I awoke grumpy, sleepy ( please feel free to add any of the other 7-Dwarf's names ! ), needing coffee and ready cigarettes, and morning medications ( which, in truth, I forgot to take until this afternoon ); even though I was in clean walking shorts, and a T-shirt ( which has become my house uniform), I awoke feeling dirty, grimy, longhair dissheveled and oily, with eyes matted shut, and incapable of even trying to view bright light. I had the usual headache which now should have a name, but doesn't. I sat out at the kitchen counter, probably where I had fallen asleep earlier, with both feet aching up past the knees from having been 'dangled' so long. And, head in hands, wishing to sleep or die, and silently opportuning the Deity for some kind of relief.
It was in this semi-stupor, that a dear friend telephoned me, to make sure I'd be up, clean-er, and dressed for my cousin's weekly visit. My cousin, a retired Electrical Engineer from Honeywell, comes out to visit me nearly every Sunday to kibitz, help me with minor house projects, and to prepare for me an exquisite lunch, as he is a much-practiced, self-taught chef.
I always look forward to his visits, for both he and his wife are extraordinarily kind, and decent individuals, and I am both honored, and grateful to call him both cousin, and friend. For, in having a number of health concerns, himself, he KNOWS pain, and knows my pain.
And, so the visit--as always--passed much too fast, and I am always sorry to see him leave. That left the rest of the afternoon. And, to be candid, I was still tired, and should have put myself down for a nap; but, I got 'busy' on the computer, and wanted to thank you, my friends at MDJunction for both reading, and bothering to comment on my Diary entries. and to respond to notes of kindness, and sent 'hugs' that ever remind me that I am NOT alone; and you cannot know or sense the nagnitude of relief, or thanks with which I receive them.
And, besides, it threatened to storm, and the thunder scares my dog so that I must stay up, through the duration of the storm to comfort her. For it is the very least I can do.
Now, as evening passes into night, even though it has been for me a good day, already, I fear tomorrow, and what, if anything it may bring. The appointment is clearly marked on the calendar, and the necessary transportation there has been arranged, now, for the past two weeks. Yet, although I am in the 'Evening Shift' of my pain and depression, I have become truly 'O.C.D'd', laying out my clothes for tomorrow, gotten my portable oxygen ready, have the MRI results in an envelope on the back of the loveseat so that I cannot possibly miss it, and have my little, over-the-shoulder carry all ready with some spare cash, wallet with debit card unside !, my cigarette case filled: it holds exactly ten cigarettes which is more than I need, when--while waiting interminably in the doctor's office for some sign of glacial movement, I do sneak out from time to time to relax on a bench away from his office, disconnect my oxygen, to have the odd cigarette.
My appointment time is at 1:30 PM, and I have to be ready to leave the house by twelve-thirty, as proscribed by the public Medicare transport. I even have asked my dear friend to telephone me then, as a wake-up call should I need it.
Then, as Sherlock Holmes would say, "Watson ! The game is afoot !" Although the actual visit may take only ten minutes, maybe ( remember, friends, that this is a business, that conducts business by volume, volume, volume ), the waiting room isn't called that by mere whim. Slowly, and more slowly do the minutes creep by, that I get tired of looking at my watch, as it accomplishes absolutely nothing. For...what does an hour, or two, or three matter to someone in pain who's also unemployed ? It matters not if the 'cattle' in the waiting room grow restive, stiff, and whose only desire is to be seen, and then 'pay at the window', and be sent home. And if my PM's waiting room is packed, as usually it is, I might not arrive home--again--until five or so, which, for me, effectively shoots the day in the heel.
And, all this time is spent without pain medication, or anything to eat or drink, even though the reception staff parade-about with sandwiches, and have large-size drinks of soda clearly on display at their desk. Though 'hate' is such a strong word, I can with complete assurity say that I dislike them all, in the extreme. But, in all honesty, they are not an isolated case, by any means.
And while, dear friends, it JUST occured to me, maybeI should get one of those kid's lunchboxes with the thermos, and take napkins along, to have my own moveable feast in front of them; however, as the outside sign says, " No eating or drinking allowed ." Pretty neat, huh ? Not only that, but my PM has a sign posted by the front door that states that anyone seen smoking will be sent home; that's why I move way down the sidewalk, to sit in front of some alien doctor's office where there's a bench I can lounge upon, in this terrible, Florida heat, so that I can perspire my way through a quick cigarette, without the risk of being summarily sent home, like some bad child. At 57, this--to me--is demeaning, maddening, and unecessary, but it the price that I, as some, Lupus/Fibro/Panic/Agoraphobe/Chronic Pain, and Chronic Fatigue whore is willing to pay for those little pills. And, friends, THAT, I hate.
But, in all consideration, dear friends, and readers, it is unfair of me to leave you thus unsettled on this Sunday night. For please know, that I am forever grateful for your friendships, and for reading me, and posting comments and criticims to me, as it further evidences to me that you are interested in me, and care about my wellbeing.
Please, then, allow me to leave you with all my fond hopes for 'painless' days, and for peaceful, restorative, and undisturbed nights. And that you wake, tomorrow, not in dread or fear, depression or loneliness, but rather to a new day, a new start, a new direction. Love, 'Zahc'

or Cancel

 

' Please Forgive Me As I Hurt, And AM S-o-o-o-o Tired '

08/20/11
Please forgive me--tonight--my dear friends, as I seem--somehow--to be on the bottom of a three-day sine wave of Fibromania, whose seeming crest has left me empty, in dreadful pain, and exhausted, somehow, having left me on a shore I hardly recognize, through the fog; I've managed to develope a case of 'Lupus face', which is a mockery of my own, and even when washing my hands, avoid the mirror.
Somewhere, I must have stashed several, "Dorean Grey" protraits of myself, that are frozen in perpetual youth, strength, and...happiness. I fully realize that time ( the Enemy ) inevitably works changes, and that long passages of time work a kind of evil magic on the mind, body,and soul wherein, occasionally, corruption overcomes that which would be changeless.
For, if given half a chance, I think that all of us would willingly drink again from that sublime fountain that might free us from adversity, illnesses, and the inevitability of age in which more and more of formerly taken-for-granted youth and beauty declines--not arithmetically--but in revealed surprises. Losses upon losses spring, unbidden to the scene, and to add to it Lupus/Fibromyalgia/Chronic Pain, and Chronic fatigue, seems all the more ugly, because it seems so unfair. And, certainly, undeserved. NO one deserves it. For even if it be genetic...still, NO one deserves it. EVER. And so, my dear, dear, friends, upon whom I have come to rely more and more, please allow me to close with an half-remembered passage of a poem by William Blake, from his "Age Of Innocence", to wit:
Every night, and every morn,
some to misery are born.
Every morn, and every night,
some are born to sweet delight.
Some are born to sweet delight,
Some are born to endless night.
It is not a matter of choosing wisely, or, too well, as it really dosen't involve choice at all. In the inevitably of 'Being', it becomes but a part of living, I suppose.
So to all my dear friends, may I wish you pain-free days, sound, and restorative nights, freedom from depression or despair, and always, much, much happiness. love, 'Zahc'

or Cancel

 

'Oh, How The Body, Mind, And Spirit Are Thus Corrupted By This, "Fresh Hell" '

'Oh, How The Body, Mind, And Spirit Are Thus Corrupted By This, " Fresh Hell ."

Aug 18 2011

08/18/11
My very dear friends, pleasse forgive and excuse me if I an of an unaccustomed brevity today; for I am in such complete and 'global' agony of pain, that I can bearly stand it...and this, after dosing and re-dosing myself into oblivion, not wise--perhaps--but often--in search of some relief--wisdom, and common sense are both readily abandoned. The, "Fresh Hell", I mention, referd to some now unremembered quote of Shakespeare ( boy, that 'Willy-boy' certainly knew where to put pen to paper ! ), while I, on the other hand, am in a pain daze, and a mind fog that has rendered my useless.
Think of that old joke, in re: rushed, and to hurried Europen Tours, to wit: "Twenty cities in twelve days !". For today, that would be a most apt analogy, as during these 'fare-ups', calendar ( and sometimes clock ! ) time remains a mystery; I knew--for example--that I had an apointment--this morning--to see my Shrink, but was in so much pain upon awakening, that today ( Thursday ) might as well be any other day at all; it made that little difference. And so, it was probably only the mark on the calendar of today's visit that told me that is was--and is, do far, Thursday.
For me--at least--the traditional pain scale of 1-10 means nothing; it is so abstract a concept that, although I fully know that care-providers need something to which to compare relative values, the scale might as well be from 1-100, or 1-1,000. As an abstract, and completely subject model, it requires us in a most simplified form to conjugate our pain; how can I do that whenever I, 'hurt', all over, in varied places, and to different extents. There--eventually--is reached a level of pain so complete, so debilitating, so unbearable, that it simply CANNOT be quantified, at least until there are such discriminating assays, to reckon pain down to the cellular level. And, 'FYI', I am never beneath a 4.5 ( yes, I decimalize it ). Or, how about 4.75 ?
If possible, it would probably be much easier to cataloge what ,' doesn't ', hurt. And, that would still prove difficult, for as I my have mentioned before, such an almost infinity of pain is much like a restaurant's salad bar, but only if it were a thousand miles long; pain is the salad. The medications are but an offering of salad dressings to go on top.
Sometimes, these ,'super nova', flare-ups evidence pain in the strangest places.
Today, for example, my right eye won't function If you have ever experienced pain to such a degree that even your very eyelashes hurt, then you will know what I mean; it felt as though my eyeball had been ripped from its socket, and then savaged by razor blades, and then, replaced. All I had in the house by way of eye drops, was a six-month old prescription for antibiotic drops, which when uncapped, and applied, were not as usual eye drops, but of a consistentcy of pancake syrup, which promptly glued my right eye shut. So that now, in addtion to the pain that blurred my vision, I functionallly have no depth perception, yet, the eye pain continues. And...its odd.
A neighbor Lady--whom I have seen in months--sudenly came by for a brief visit; its the first human company I've had in the house for days ? Weeks ? And while she interrupted my little, 'choo-choo train of thought', it was nice to have company again; she is almost eighty, and her husband is nearly eighty-three, and both of them now have health problems. Gosh...I realized that I have known them for twenty-six years !, and that--before--they were friends with my late mother and father. None of us get out much, me, least of all, I think, as this utter pain, and the agoraphobia makes of me a willing, and unwilling prisoner in my own nome; every day is like being on 'house arest'.
So...how do I cope with that which seems un-copable ? Do I cope? Can I cope ? Do I even HAVE any coping skills left ? Mostly, these are strategies, and little games I play in order to just survive. Everything comes with a price tag attached. For the medications I take for pain, and for other maladies are most welcome if they manage to bring even some respite ( for, without it, I would surely lose my mind ), they also dumb me down, make me listless and irksome, and cranky, and with a head that feels as if stuffed with cotton, not wanting to think, or move, or to be disturbed.
The Apocalypse of Lupus/Fibromyalgia/Chronic Pain/Chronic Fatigue/Anxiety/Panic/Depresssion, and Despair, and much more cause intense pain, leaving me forgetful, unattached, goofy, even, almost incapable of recognizing immediate needs, as profound as : am I hungry ? What did I last eat...and when ? And, often, there is a large part of me that just simply does not give even the first part of a good damn. Is it hunger pains, or just nausia ?
What I DO find I am beginning to do more often, is to seek out friends at MDJunction, for posted hugs, and kind messages, for--in truth--I find they sustain me. It is with them that I can openly share both hopes and horrors; I hope to celebrate their triumphs, and--perhaps--give comfort to them in their defeats. This is the very least I can do, both for them, and....myself. For the hand that is extended in friendship, can often be the very hand that steadies.
And so, my dear friends, and colleagues at MDJunction, please let me close for now.
I cannot know what pain tomorrow will bring, or even how to survive the evening until an uncertain bed, I can still wish all of you well, and pain-free days, and, peaceful, and undisturbed nights, as well as wishing for you much happiness, as well as a mutually found sense of rightness and serenity.
So--as always--please, please take care. Love, 'Zahc'