08/07/13
My dear new friend, ‘durham423’,
Please do forgive the lateness of my reply, as I
know that you had asked me for information and/or advice, and I did not want
you to think that I had either forgotten you, or was neglectful.
If you have not already done so, ‘durham423’, I
would ask that you kindly read my profile here at MDJunction, in order to get
to know my situation better.
Also—as you have seen—I do write the occasional
diary entry; sometimes it is rant. Sometimes
it is prose; sometimes—more rarely, now—it is poetry.
Joining MDJuction was one of the most singular, best
things that I have ever done as I have met so many co-sufferers, or those whose
mental disturbances or physical complaints differ from my own.
Always, ‘durham423’, the members have been most
kind, accepting, and supportive, and I now have wonderful friends, four of whom
I speak with on the telephone on a fairly regular basis; others have kindly
shared their private e-mail addresses.
I would also ask, please, that you might refer to
any of my diary entries which may prove to be of some help or interest to you
and your husband.
‘durham423’, please first accept the disclaimer that
I am not a licensed therapist, nor professional, so that anything I might say
is the product of my own thought and experiences.
You stated that your husband has been recently
diagnosed as having Lupus; it—along with Fibromyalgia, Connective Tissue
Disorder, and Rheumatoid Arthritis—is among the auto-immune system diseases.
Others (to the best of my recollection) would
include Lou Gerhigs’s Disease, Crohen’s Syndrome, and Huntington’s Corhea.
There are specific bloodwork targets that indicate
the propensity of developing these conditions, and possibly their progress and
intensity.
As they represent difficiencies in the immune
system, they attack at the cellular and organ or brain level.
With Fibromyalgia—for example—few external signs are
evidenced, thus, some of these conditions are often referred to as, “the
illness(es) that has no face.”
Consequently, many individuals thus afflicted are
often called lazy, not wanting to work, an excuse—often—to try to obtain
disability income. And it is not only
members of the public who feel that way; too many times, I have seen family
members and even formerly good friends incapable of understanding just how
serious, painful, and incapacitating these conditions are.
Thus, the individual so afflicted often feels alone,
isolated, depressed, and despairing.
As your husband has been definitely diagnosed with
Lupus, there are—now—a number of specific medications that can be brought to
bear to help relieve symptoms.
Some that spring to mind are:
1)
Placquenil
2)
Lyrica
3)
Gabapentin (Neuronton) for nerve-induced
pain
However, these medications
are not without potential side-effects which may limit their application.
For example, ‘durham423’,
since I am Diabetic, Type II, and have a dangerous tendency to retain fluid
abdominally, and from knee to both feet, I found that both Neurontin and Lyrica
caused a marked increase in fluid retention, and so, I had to stop using them.
Your husband may have
Lupus alone, or it may be coupled with Fibromyalgia, etc. which—given the
extent of the illness, can be truly life-altering.
He may have chronic
pain and/or chronic fatigue. He may run
low-grade elevations in temperature, and may become sick easily after only
casual contact.
I also suffer from
G.A.D. (generalized panic disorder), which includes, panic attacks, anxiety,
depression, and agoraphobia (whereby I find it difficult, if not impossible to
venture outside my home).
Thus, in addition to
seeing a Pain Management Primary, I also regularly see a mental health
therapist, and am also on medications for G.A.D.
Personally, I have
found my own conditions—over time—to gradually worsen, with, ‘plateau’, periods
in-between.
Please also forgive me,
‘durham423’, as I do tend to run overlong; it is a habit I cannot seem to be
rid of.
For comparison’s sake, ‘durham423’,
I would like to include—now—the first diary entry I ever made to MDJunction, on
July 31, 2010, in hopes that it can be used as illustration.
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07/31/11
Today has been a day most strange; I awoke from sheer
nightmare to pain beyond pain, and lumbered out to the kitchen (a little past 5
AM) to take my opiate medications with shaking hands, as if I were touching
gold. For me, it IS gold, of a kind more rare than genuine gold, for I know,
hope and pray that somewhere amid that overlong 'launch window', the major part
to the pain will subside, though not completely disappear, as a Minotaur in its
Maze. Instead, I sat at the kitchen counter, with my head in my hands, as
I had such pain that induces chills, and a coldness deep within. For a
long time, I sat there, really without conscious thought, an amoeba in my own
home; the kitchen lights were unusually bright as in a bus station, and my dear
dog just would not leave me alone; she kept circling my legs, occasionally
scratching me with her paws, or, butting her nose into my crotch as I sat
there. In a small voice, I kept begging her to stop scratching at me as
it hurt, yes...another pain upon pain. Maybe she was worried, maybe she was
concerned; but I tell her to not scratch me, leaving white trails down my
calves to my feet. How can I tell her that I have Diabetes, and that a
skin wound takes forever to heal? I was
still drowsy, but my old friend Pain would have never let me return to bed. My
back was a xylophone of ringing pain, played upon by hellish imps with hammers.
Slowly...so slowly did the medication take effect, or the effect that it could,
that I was not 'one' moment in agony, the next in paradise, but in an
agony that, as it slowly ebbed, merely left me limp as if I had lost my spine,
and weary, not tired, not exhausted....but weary; there IS a difference.
I offered up mumbled prayers as the kettle whistle began to sound.
Ah...blessed coffee...and the usual cigarettes. I had to push my dear dog
away. No thoughts of any importance came to me, and I think I would have
actually enjoyed the early, early quiet of morning, had it not been heralded by
lightning bolts of pain. On impulse I telephoned a friend of mine who is a
long-distance hauler, who would either be at the wheel, or, asleep; no matter,
his cell phone would take my message. However, he did answer, and we spoke for
several hours, off and on, as he paused to answer his C.B.radio, or to stop at
weigh stations. His--too--is a lonely existence, for even though he drives with
his brother, at any one time, one or the other is asleep; seldom are they awake
at the same time, for fueling or bathroom stops, or for food. I almost
can imagine being so high of the ground, in a massive truck, driving at
70 m.p.h. at night, alone, and in a darkened cab, lit only by the end of his
cigarette, and by the myriad of small blue indicator lights. And always,
the susurrus of the wheels against the road, that makes the head want to nod,
and the eyes to close. So, for a couple of hours, I listen as he talks
and sings parts of Country songs. We are both, and all of us just
trying to pass the night. To the famous poet who once penned that,
"...no man is an island", I would have to disagree; we are all little
islands, kept ever separate and apart locked in our own bodies, and in our own
minds. In between calls, I made more coffee, smoked more tasteless
cigarettes, trying to decide if I was getting hungry, or whether my stomach
just hurt. Nothing appealed to me; besides, the pantry is very low, and I
am running out of nearly everything, yet, I only have $31.40 in the checking
account, and, after I see my 'Pain Management person' with his $20.66 required
co-pay just to be seen, I will have about eleven dollars left until my
disability check comes through on the 3rd. I finally cooked something
with brown rice, canned chicken, and peas in it, and it was fair and sufficient
to fill an empty need. At eleven AM or so, I crawled back to bed, and
slept off and on until four, this afternoon. Time for pain medications
again, they know no time clock, and then to the bathroom, and out to the
kitchen for more coffee. Funny how I can have coffee and cigarettes right
away, but the slightest thought of food sickens me for about four or five hours
after I awake. I had the coffee in my cup, and the water boiling, and my little
packs of sweetener lined up in a row of five, but suddenly, try as I might, I
could not tear the tops off the little packs; I had no strength, while my head
pounded like some hollow drum of eye-wincing pain. I had to use the scissors to
open the sweetener...first time that happened, I think. I guess I should not be
surprised anymore with anything weird that involves my mind or body.
Granted, all fingertips, and, half of both hands are now numb from
neuropathy. As are my 'widdle piddies': my toes, and half of both feet to
the ankle. With feet that no longer quite look like feet, but are like a 5 yr.
old's drawing of feet; edematous, and misshapen, and discolored. I know
they belong to me, as they are attached to my legs. I try to not, but cannot
help but take the occasional peek, I guess, to see if they are still there;
they now explode out of my shoes, even to popping the Velcro closures
sometimes. This headache will not go away, nor will the pain scattered
all over my vastness. Parts of my arms feel as if they are frying off my
body; it is NOT like flu, not like uber flu, not like anything I have ever
experienced. I want to be feel happy, and, for God's sakes, maybe have a
little fun. I want to laugh; I want to feel light and
carefree. I want to be transported to Mars...anywhere where there is NO
pain. "No pain here!"; 'Pain not allowed!". I want to run.
I want to suddenly check myself from head to toe, and astoundingly feel nothing
but wellness, gratefully leaving far behind the pain, the despair, the odd days
and nights, the constant and unabated weariness and sluggishness of mind, and
torture of the soul. I want to throw ALL my medicines away, and take
the rest of my life off, playing with my dog. But in my own circus
from hell, just how many monstrous clowns can fit into that little clown car?
'Pain....Management'. Two simple words. How can one 'manage' the
unmanageable and the unending? By tossing and tossing more and more drugs
at it to appease the ravening beast? For it is never truly appeased, and it
never truly goes away. What it does most successfully, is to make me tired and
stupid, wanting to do nothing more than eat (if it’s convenient ! ),and to stay
abed in that little twilight land of pain and mindlessness. 'PM' is just a
business, not a charity, nor a comfort to the soul. Once, upon arrival
for my visit, nearly out of blessed meds, I was not allowed to see the doctor
as I had left my wallet at home, and could not--therefore--pony up the $20.66
co-pay. I have never forgotten that sum....$20.66 (which many people carry
around on them as pocket change), for they would not bill me, or let me slide
until the next visit, or do anything, except arrange for my transportation
home, with NO scripts in hand. I died as I asked a woman in the waiting room if
I could borrow the money from her, knowing, knowing, knowing that she
would look down and past me saying she could not. My pain had made me beg, and
at that moment I hated myself in the knowledge that I was now aligned with
"Druggies" who will do anything for a fix. There was no logic,
nor promises, nor sympathy, nor...kindness ( ? ); the receptionist avoided eye
contact with me, though, she could not have cared less. Why should she? She
was in fine health. It did not matter: she was the 'Sphinx' who
posed to me a riddle I could not answer,'tho I already knew the answer: $20.66.
It was a magical number, a trifling sum that risked my running out of
opiates, and into withdrawal. Ho-ho, I thought, so this is what it comes down
to. $20.66. $20.66.$20.66...it still rings in my head; now...I carry my wallet
in a pack I can carry over my shoulder. In it is my debit card: my passport to
a five-minute visit, a few 'same answer' questions, and the scripts: three,
little pieces of paper, innocuous in themselves, papers that awe me, and repulse
me, as they--alone--spare me (almost) from flying past a '10'on the pain scale,
into an insanity of pain, the thought of which frightens me, as--unabated--how
would it end? With me howling at the moon, or clawing up the turf, hurting as
only an animal hurts, without reason, without breezy conceptualization, without
mind? Friends, and co-sufferers, I think I would reach for my gun, much as is
done to relieve an animal's suffering. I don't know. I hope to
never know. All I do know is that for me, $20.66 is the line across the
sand that separates a continued--though, lousy--human existence, from a dying,
animal's end. It’s that simple. But...why should I continue thusly?
I fear I am trying to ' preach to the choir'. No one will read this as it
is dreary, and ponderously overlong. And, to what purpose, what end? To
walk my wits at the evening of another day? And why? The 'well' will not care,
as they cannot care, and to all of us who suffer from Lupus/Fibromyalgia/and chronic
pain...it is already a life many of us lead. I had hoped to nurture,
help, support, and with all my heart's blood, to try to alleviate mutual
suffering through exposition. And...as I have most grievously failed in
all regard, today, I apologize, and ask for your kind forgiveness. And,
for your patience and understanding. (sigh) No matter really what I say,
in time....all dead fish smell alike, and are equally repugnant. As
always, your criticisms and comments are most gratefully welcome. I can only
wish for you many, many, many 'well' days, and agreeably peaceful, and untroubled
nights. And, the sleep of the innocents. And...I wish you happiness
in full measure. Please, please, please do take care. With love to
all,
'Zahc'.
But…as I recall, friend, ‘durham423’, you had asked about
ways to live with, and coping mechanisms following a diagnosis of Lupus.
Largely, it will depend on how severe your husband’s
Lupus is, or whether it is a flare-up, or, in remission.
He (and you) must recognize his limitations, and what he
can do now, and especially—should it advance—his ability to function in the
future.
Continued employment may be a problem, and the inevitable
stresses imposed by a suddenly decreased income, and how it may affect your
standard of living.
Friend, ‘durham423’, while you did not mention children,
or pets, friends or neighbors, they may come into conflict should your husband
need more rest, naps, or is easily over-stimulated by sound, bright colors, or
movement. Does he now require more or less absolute quiet?
Personally, I have found Lupus and Fibromyalgia to be
extremely enervating, sapping energy, and inordinately painful.
Either the conditions—themselves—or the medications in
place alter the taste and substance of food.
And, that it has become impossible to sleep the entire
night through without wakening for bathrooms calls, or that the quality of
sleep—itself—is not sufficient, restorative, or, refreshing.
I have since discovered that, ‘coping’, and, ‘enduring’,
are one in the same. The medications for
pain, and for G.A.D. DO help, but that there is always (on a pain scale of
1-10) pain and distress never lower that about a 5.5
I live quite alone (now that my precious, canine
companion, “Daisy”, passed away the end of June), and do rely upon kind
neighbors for grocery shopping, errands, and limited company.
Consequently, I spend a number of hours a day at my
computer (which a dear friend gave me, for which I am grateful as I have no
television).
That does help pass the time.
Having kind and understanding friends is a Godsend; and
contemplation and prayer helps to center me.
I am also in the application process to be given a, ‘Service
Dog’, one that can detect my errant moods, highs or lows in my glucose levels,
help me with walking, and, to be ever watchful should anyone attempt to gain
unlawful entrance into the house, and/or to harm me.
BTW, this follows a most recent middle-of-the-night, home
invasion during which about 98% of my medications were stolen, while I slept!
‘durham423’, actually, your kind patience, support, and
understanding will go a long way towards helping your husband to cope; he may
now—or in future—be less able to participate in the day-to-day running of the
house, the car, the laundry, the bills, the grocery shopping, etc.
Friend, ‘durham423’, please feel free to further, ‘PM’,
me, or send comments.
And…if you would not mind, ‘durham423’, may I use my
response to you as a diary entry? It is my sincere hope that I may have proven
to be—at least—of some, small help.
I wish you and your husband all fond regards, lessened
pain and/or distress, and hope…now, and in the future.
sincerely,
‘Zahc’
