"This thing" has become intolerable. "This thing" has entered a new phase. No one really believes in "this thing" except for me and I'm beginning to wonder if I'm better off dead. In fact, I'm beginning to feel as if I am dead already.
Enter pain mode...
I went in for surgery on the day before Thanksgiving (minor surgery to remove a skin lesion). My legs were shaky and I felt weak. I brushed it off as the jitters: I didn't really want to have surgery, especially surgery with only a local. I'd fought against it, then I'd had to fight *for* it when my physician countered with the "c" word and scared me all to hell. Point in case: I was upset and nervous. But it didn't start there.
All summer, I've felt wrong. My hands tremble when I reach for something, or when I hold a glass. I feel tired, confused, miserable. By Halloween, I felt like I had the flu, but I'd just had the flu two weeks before, so it must be nothing, right? By Thanksgiving, I was experiencing lower body muscle fatigue, trembling in my legs as if I'd just finished a rigorous workout, weak feeling in my lower back with heat, as if... well, as if I was coming down with the flu. Then the surgery.
Pain, like you wouldn't believe. I was freaked, convinced I had a bloodclot though I wasn't discolored. Swelling. I couldn't sit for the pain but I couldn't walk for the weakness. My legs weren't my own.
That passed-- yay!-- mostly. Then the tingling began. I felt as if my entire lower body from my belly button to my knees had gone to sleep, and it crept up my right side to my armpit, down to my elbow like Novocain. In fact, my pubic bone was so numb it was painful, and it felt as if someone was hitting me repeatedly with a wire barbeque brush. Finally, I had an appointment with a new doctor. Finally, maybe some hope...
He hadn't even a clue what it might be. He suggested that, since I was able to ignore most of my symptoms, maybe I should just ignore this. His only suggestion was an antidepressant, which I abhor. But I was just that desperate. On my way home, resolute to just move on, determined to get past this, I actually considered it.
Then I realized, like the old joke, "A man goes into his doctor and says, 'Doc, it hurts when I do this,' and the doctor replies, 'Stop doing that.," I'd stopped doing that. Rather than "ignoring it," I've simply stopped doing the things that are uncomfortable. In short, I've stopped doing so many things that I'm barely alive anymore. I'm barely a wife, barely a mother, barely a human being. And now, if I stop doing that, I will be giving up the very last thing that makes me real: my writing. I owe it to myself, my family, my husband to start fighting back, despite my pessimism from years of doctors who simply tell me to stop doing that.
Other than the possibility that this is indeed Fibromyalgia and I should just buck up and take the damned antidepressant, I am running up against two new possibilities. MS or Lyme. Yes, my doctor who sent me home without a clue seemed to overlook the fact that all my symptoms fall into those categories, so why not test for them? Maybe I was tested for Lyme years ago. If so, I'm sure it was negative, but from what I'm learning of the infection, many tests return negative when a person is, in fact, infected. In addition, even an MRI often comes up negative even in confirmed sufferers of MS.
So why don't I get retested? Answer: I will. I'm done turning belly-up to this thing. I will not let it rule me. I'm tired of pretending and protesting that I'm fine and letting folks think I'm lazy, hypochondrical or just plain apathetic. If all else fails, I'll take the damned antidepressant. But guess what?
I just discovered that an experimental therapy for Fibromyalgia is the same antibiotic as used to treat Lyme (doxycycline). So what have I got to lose???
Monday, January 10, 2011
Tuesday, September 14, 2010
English as It Should Be
In the same spirit as Ebonics (but certainly, not in the same vein), I give to you the Rules of English as they should be, for all students of the English language.
This is based on watching my daughter struggle to master "sounding it out."
This is based on watching my daughter struggle to master "sounding it out."
Part one: the new alphabet. There will no longer be any groupings of letters (or single letters) that masquerade as others. For instance, OO and OU will now only be represented by the letter “u” with the marker “^” after it to denote the long vowel (unless you'd rather have an additional 5 letters in the alphabet to represent so-called "long vowel sounds," which I'm all for). All other letter-groupings are the same. “S” now only represents the sibilant, “s,” not “z” and “c” is superfluous, etc. The new alphabet, as it should be:
29 letters, as opposed to the current 26 letters:
^= marker at the end: converts any vowel to its long sound.
A= short “a”; with the addition of silent “^” at the end it is “ae”
B=b
D= d
E=short “e”; with the addition of silent “^” at the end, it sounds like “ee”
F=h
G= the guttural sound “g” only: no longer will it sound like a “j”
H=h: no longer will it be combined with any other letter to make a different sound
I= short “i”; with the addition of silent “^” at the end, it is “eye.”
J= j
K= k
L= l
M= m
N= n
O= “ah”; with the addition of silent “^” at the end it is “oh”
P= p
Q= q
R= r
S= the sibilant, “s” NOT “z” and there is no longer a need to add a second “s” to any series to achieve this result.
T= t There is no longer a need to add a second “t” to a series to achieve the same result. “T” never results in a “d” sound, now, and is never a glottal stop, as in “mittens.”
U= short “u” as in “uh.” With the addition of silent “^” at the end, it sounds like “oo.”
V= v
W= w: there is no longer a need to add “h” to “w” to achieve the same sound.
Z= z
C= ch: since “c” represents either “s” or “k” it is superfluous and “ch” is redundant. “C” now only represents the sound currently identified as “ch.”
+= “eth”: The hard “th” sound as it’s represented, now.
X= since “x” represents the letter “z” and sometimes the combination sound, “eks” and not a letter sound of its own, it is now ONLY the “sh” sound (as it’s represented now.)
All combination sounds will be spelled as represented: “xray” will be spelled “eksra^” Seem complicated? It’s a lot less complicated than the crap that passes for phonics, you know…
PS-- Don't ask me what to do with the word, "ow." I haven't thought it through that far, quite yet. Depends on your accent, I suppose... "aw?"
PS-- Don't ask me what to do with the word, "ow." I haven't thought it through that far, quite yet. Depends on your accent, I suppose... "aw?"
Friday, September 10, 2010
The Sweet Smell of Weenies...
If I were God, I'd be pretty pissed off if somebody planned to break into my Library and turn my Books into a bonfire. I wouldn't want to meet my Maker and have to explain why I thought it would be a good idea to roast weenies on His Holy Writ. Honestly. Some people are such Skeezixes...
Remember folks: you are what you eat. Just say no to the s'mores of intolerance. Otherwise you might find yourself toasting your marshmallows over a different sort of fire in the Afterlife...
Wednesday, May 12, 2010
Living With Pain
All right. So... late in 2005 when my youngest was still an infant, I began suffering from what was diagnosed late in 2006 as two conditions: Hyper-Mobile Joint syndrome and Fibromyalgia, respectively. I can't help but agree with the first, but the second is such a mystery (even to those who suffer) that I can't avoid questioning the diagnosis.
What IS Fibromyalgia, you might ask? In simple terms, it's aches and pains that have no apparent cause. Sound suspiciously like, "It's all in your head?" If it does, you're not alone. That's what it sounds like to me.
There is no "cure" for Fibromyalgia, since they haven't even got a clue what causes the pain. Simple pain meds barely put a dent in it (and taking pain meds for a chronic condition is really a no-no). Of course, that doesn't really frighten me, as there's no cure for hyper-mobile joints and eventually if I'm not careful (and no, I'm not careful) I will probably suffer from degenerative arthritis. But treatment for Fibro is "empirical"-- meaning, everything is a shot in the dark and your guess is as good as mine whether it works. Researchers are much heartened by anti-depressant therapy (I am not-- not only can I not take anti-depressants, but only about 40% respond to this treatment. A good shot of Valium might do as well).
But for a person who has been "diagnosed" and questions the verdict, what information is there to allay their doubts and allow them to creep from "denial" to "acceptance"? I've Googled and Goggled and Googled... there don't seem to be many testimonials out there. Each time I find a description of Fibromyalgia, it's clinical, either written by a healthcare practitioner or transcribed by one. Most "self-help" or "actualization" blogs deal with what a person has done that works or doesn't work for them, and descriptions are vague, amorphous and generally tantamount to, "I hurt so bad I wanted to cry." Fine. But how did it hurt? What part of you hurt? Was it all day or just when you did something or other? Was it a burning pain? A shooting pain? A dull ache that just snowballed until you couldn't take it anymore...? We know Fibromyalgia is, literally, pain. But what does that pain feel like???
So I have no way of knowing if I truly have Fibromyalgia (other than, of course, I experience pain that the doctors cannot identify a source for). My "diagnosis" consisted of a doctor pressing into certain parts ("pressure points") and taking note that it was uncomfortable. Not particularly painful, mind you: just a shy bit on the "ugh" side of "heh" for all but two. Since there are 8 required, I think, to diagnose Fibromyalgia, I'm not sure it qualifies. STILL...
Whether or not I actually have Fibromyalgia, I've been diagnosed with Fibromyalgia, so maybe, just maybe, my own testimonial might be helpful for others in varying states of denial. Therefore, maybe, just maybe, there's a good reason to write it all down...
Prestage: neck pain, lower back pain, eczema in the ears (for which a topical prednisone was prescribed). Xrays showed nothing but a small amount of scoliosis and "something" on the film that my doctor asked if I had had any surgeries that they might have left something inside (!) but which the xray technician decided was "nothing." (Nothing???) Night-sweats (which, along with the back pain, started long before the prednisone). Directly preceding all this, I was pregnant and I also started using a memory-foam pillow. Then, when the back pain worsened, we bought a sleep number bed (at which point, the night-sweats began). A link???
Stage One:
The first thing I noticed, if I remember correctly, was pain in my heels. I would wake up in the night with burning, throbbing pain in my Achilles running from back of my ankles all the way down to the flat of my heel. Most of my pain occurred during the night: the weight of my blanket or the weight of my body would inflame it after about two or three hours of inactivity. I was told to take at least 600 milligrams of Ibuprofen twice daily to bring down inflammation. This was the first of the medications I was given.
They say that stress can trigger Fibromyalgia symptoms. At the time this began, I was 36 years old with a new baby (adopted at age seven months). The baby had feeding issues (bulimia and anorexia-- and obviously not the "weight control" kind) and doctors were telling me that he was perfectly healthy, suffering no ill-effects and not failing to thrive. In the meantime, I was constantly covered in vomit and feeding-time (which should have been the epitome of bonding for the newly adoptive mom) had turned into a nightmare of insecurities, frustration and sometimes downright anger. For obvious reasons, my son himself developed anger and frustration issues through this experience. I began to wonder if he was making himself vomit on purpose. Awful, I know, but we were lost, alone and completely unsupported by the people who should have been helping us to overcome this issue. He would eat everything in sight for two weeks and pack on the ounces (once, nearly a pound!) then slowly work down to refusing any food (bottle or jars) until he'd vomit everything I managed to wheedle into him for an entire week. His weight would plummet, his face was thin and haggard, his hair was thin and lank, his skin lacked luster, his teeth came in mottled. Since he wasn't dehydrated and he wasn't "losing weight" (he would gain it all back quickly plus an ounce or two for good measure) the doctors constantly assured me that he was fine. Yet throughout it all, his intelligent eyes stared out at me accusingly, angrily, "Why are you doing this to me?" "Why aren't you helping???" His anger was contagious.
Yes, I was stressed.
((In the months leading up to this most wondrous time in a mother's life, I should also make note that we moved from a temperate climate into one where the snow piled up two-feet deep in the first week we took up residence there, and I suffered a miscarriage the following month. That was five months before our son came to us and about two months before my pain began, so it might have little or no affect on my tale. It did play a factor in my increase of pain from hyper-mobile joints, as tendons and ligaments loosen during pregnancy so perhaps, "Stage One" should actually have been the lower back pain I acquired from a combination of scoliosis and loosening ligaments.))
Stage Two:
The Clumsies. I have no idea whether "The Clumsies" has anything at all to do with my supposed Fibromyalgia. I make note of it for the same reason I make note that I started taking Ibuprofen regularly during stage one: because there might be a connection. Perhaps the connecting factor was lack of sleep: not only had heel pain woken me repeatedly during stage one, but so had an angry, hungry baby who could not sleep through the night (for obvious reasons), was ravenous when fed but just as likely to vomit it all up or refuse the bottle, scratch and pull my hair while slowly starving...
Right, so The Clumsies started now, pretty much. During the month of October (less than two months after my son's arrival) I manged to fall down the stairs-- every mother's nightmare: I was holding my baby son at the time, but twisted myself into a pretzel to protect him, holding onto him for dear life and managing to save him though not myself.
All-in-all, it wasn't a bad spill. I had a small bruise on the small of my back and wrenched my shoulder when I grabbed for the railing to halt 135 pound of me from plummeting head-first to the base of the stairs and landing on top of my fragile son. I came to a halt-- not at the base of the stairs which might have been the outcome had I not been desperate to protect the baby-- but halfway down, on my back, with one arm gripping the railing and the other hanging onto the baby. Most of my weight was taken by my lower-back on the edge of the stair.
Later that same month, I was outside enjoying the sunshine (okay the shade) and typing away on my computer when the monitor told me the baby was awake. I closed up shop and started into the house, caught my big toe in a slightly-raised portion of the patio (one I'd stepped over a million times) and fell flat on my face. I mean, seriously flat on my face. Since I was holding the computer under my right arm, and of course my first thought was not to drop it, I didn't stretch out both arms to save myself. Did no good: when my right elbow struck the pavement, the computer went flying. It still bears the scars of our misadventure... and so do my jeans. I scraped my chin, my elbow and my knee (but I have strong bones, let me tell you... still nothing broken-- not even a rattle in my brain pan). Talk about hurt-hurt-hurt, though...
By November, the pain in my shoulder from the fall down the stairs was no better. And it had moved to the second shoulder. Small tasks like clasping a seat belt or slipping my arm into a jacket were excruciating. Still, there was nothing wrong with me. Just aches and pains that wouldn't go away.
Then the pain followed me to bed...
Stage Three:
By Mother's Day of 2006:
My lower back pain seemed to be spreading to my hips. I couldn't get comfortable at night (despite a Sleep Number bed and a gazillion attempted settings). On my side, I felt as if my hip were being thrust up into the air like Mount Everest, twisting my lower spin unnaturally. On my back, the Achilles pain would start again (from pressure of my heels against the mattress), burning, burning, burning, from the bottom of my heels up to my calves.
In Stage Three, the slightest pressure of my body on the mattress caused... how to describe it??? Dante's Inferno, eternal damnation, torture in the extreme, flayed alive, a monster burnt by torch-wielding villagers...?
I thought I was going to die...
During Stage Three, here's a clinical list of my pain:
Lower back and neck pain: Most likely from a combination of pregnancy loosening my ligaments (which are already loose from HMJS) and scoliosis.
Deep hip pain: It felt as if my legs were being pulled from their sockets
Muscular hip pain: muscles of the lower-back and surrounding the hips were tender and achy, as they might be after a gentle, five mile walk when not accustomed to exercise.
Deep shoulder pain: It felt as if my shoulders were being pulled from their sockets.
Facial Pain: My jaw felt as if it were being pulled from its socket. My ear canals throbbed, my temples throbbed. The sensation was similar to a burning fever, and yes, the skin felt hot to my touch and always felt hot "inwardly" (in other words, even if I wasn't feverish, I felt hot to myself, though maybe not to the touch). Ear pain began in the "lymph node" below the earlobe, and traveled down to my shoulder, meeting up with the shoulder pain. Head, neck, shoulder pain all seemed to be one.
The thing that should be noted here: all pain was one-sided, though it occurred in both sides. How is that possible? you might ask. Because whichever side I slept on hurt. Yes, whatever part of me touched the bed felt like poisonous gangrene had set in during the night. I am the Princess and my entire bed was The Pea. My pillow-- even the light, fluffy, thin down pillow I bought in reaction to the facial pain from a "firm" fiberfill pillow-- weighed against my ears and jaws as if I was sleeping on a log. If I slept on my back, hoping to spare my face, shoulders and hips, the weight of my own feet and chest would start the pain in my heels and shoulder blades. If I bent my knees to compensate, the weight of the blanket was unbearable.
During Stage Three, I slept only about two hours at a time. During Stage Two, I would awaken, but change positions and fall back asleep. During Stage three, there was no position, since I had already woken and changed positions to relieve pain on one side during the night and by that time, both sides hurt. Like most normal people, when I wake fully, I have to pee. Immediately and unquestionably. If I try to put it off, I only become more awake. So... waking fully from pain, being aggravated by hydraulic pressure, actually having to get out of bed to relieve some portion of discomfort so I could delude myself into another hour of "rest."
Basically, though Stage Three is system-wide pain, it's also characterized by sleep-deprivation. I would stay up as late as I could-- until I felt nauseous and dizzy from fatigue-- then drop into a hopeless sleep. I imagine I "slept" about six hours nightly (defining "sleep" as the time I drop off to the time I get out of bed), but actual sleep-time was nearer to three or four hours a night. Most mornings I was driven from bed not from a sense of duty but because one more hour of sleep would be excruciating rather than restful. Being in bed was torture.
Stage Four:
Begging for help. The doctor tested me for Lupis, Lyme and ummm... MS? My Rh factor was normal (rheumatoid arthritis). Then she sent me to a rheumatism specialist. He poked me here and there and told me I have Fibromyalgia.
Of course I'm depressed, you ninnies!!! One sign of Fibromyalgia is depression. Good GOD people. Of course we're depressed. Wouldn't you be, if you'd just spent the last year in pure hell, sleep-deprived, frightened, wondering if you were going to die??? Unable to move from the pain but lack of movement makes it worse? Having to choose between the aches and pains caused by everyday activities and the burning torture of trying to rest? Exhaustion, fatigue AND pain. You know... there are tortures used by governments that are less torturous and break the spirit and will-to-live of their victims. Please... Do NOT inform me that a symptom of Fibromyalgia is depression. I'm crying because every signal my body sends me is, "Help me, help me! We're going to die!!! Do something!!!" Sleep deprivation is actually the least of my worries: it contributes to the problem, sure... but if I'm waking during the night, it means I will actually wake up in the morning. I'm not dead. If it hurts this badly, I'm still alive, I made it through one more night, I'm going to live...
Through all the pain, through all the frustration and fear and hopelessness... I clung to that one point: I woke up!!!
So... the "joint doctor" suggested anti-depressants (because, as I said, treatment is empirical and of course they just throw out anti-depressants automatically for those who are sleepless or crying). Anti-depressants make me psycho. I mean, "psychotic." Not even an option in my wildest dreams, even if I WASN'T suffering from clinical depression (anti-depressants are for clinical depression. Depression from trauma-- psychological or physical-- is called SITUATIONAL depression and normally resolves when the trauma is dealt with. In my opinion, prescribing anti-depressants for anything but clinical depression is negligent). The specialist shrugged, said, "Have it your way," and sent me back to my General Practitioner.
My MD sent me to occupational therapy (for which our insurance decided it applied to our deductible and we not only had to pay 100% but the deductible renewed after one month, since I was diagnosed in December and our benefits rolled over in January).
The therapist identified scoliosis as the source for my lower back pain, along with HMJS worsening from pregnancy (I was shocked-- my miscarriage had been in February of '05, this was December '06 and the loosening ligaments had lasted that long???) I began to wonder if the shoulder and hip pain (which felt as if my joints were being pulled from their sockets when I rested on them) was also a symptom of this syndrome. It remains a mystery. Exercises did help to relieve some of my back pain: at least while I was doing them, it felt so good... though the pain persisted-- kind of like rubbing an aching muscle: it still hurts afterward, but the massage feels great.
Stage Five:
Spontaneous Remission. Okay, this is something else indicative of Fibromyalgia: eventually, it gets better. They don't know why it gets better any more than they know what causes it. It get better for no reason, then something may trigger it again and start the cycle over again. It might be never-ending, and it might be only once.
By May of the following spring, I was feeling marginally better: mainly because the sun was out though it was still chilly and I could sit in a protected corner and soak it up. All right, so I'm risking skin-cancer. But it just felt so GOOD. Feeling chipper by noon goes a long way to alleviate feelings of doom and gloom and hopelessness in the morning. Sunshine helps, as does the fact that I didn't need to bundle up in twenty layers to go outside and walk about a bit. My ears and head felt significantly better, once the warmth of the sun hit my face. Maybe it was plain old vitamin D deficiency since I can't drink milk. Maybe chattering teeth affects the brain-pan. Whatever the case, my outlook was significantly changed even if the pain was only marginally better.
Then the allergies hit.
I have never really had more than mild seasonal allergies. The ear eczema (I now know) is caused by an allergy to something. I've been diagnosed off and on with irritable bowel syndrome (even though my main symptom was diarrhea and not constipation) along with a whole host of everything else that might affect my UT or digestion. What I hadn't done (at least, not since I was eight) was visit an allergist.
By July, I was down with bronchitis. If you've never experienced night-time pain or Fibromyalgia pain, you can't understand the torture. Coughing spasms wrack every part of your body, even those five inches that didn't already hurt. Weakness from infection and exhaustion from coughing half the night add to hopelessness. Lying in bed half the day because you're too sick to do anything, with a fever of 103 when you already felt feverish...
I slept in the basement (because it was cooler, more humid, and relieved my family of the stress of my coughing). I slept with an ice pack, which not only cooled me down but relieved that cyclical coughing caused by coughing too hard, overheating and unable to stop coughing. Wake up, grab the ice pack, hobble upstairs to the bathroom, blow my nose, curl back up... sleep another hour...
But the cold intensified my head and neck pain. Urgh...
A round of antibiotics later, I was feeling better than I had for a year. By the time my poor, cough-wracked ribs had recuperated, my shoulder pain was pretty much gone (whereas, I hadn't been able to slip on a jacket without gasping since fall).
So what does bronchitis and allergies have to do with Fibromyalgia?
Maybe nothing, who knows. Maybe everything. First, I discovered that I was allergic to many substances in my environment (which caused the infection, eventually) and second, I discovered I had food allergies. Some of the environmental factors were also in my food!!!
There's the possibility that the antibiotics had an effect. It's also possible that avoiding food allergies and taking a regular antihistamine had an effect. Whichever was the case, I slowly climbed up from the abyss about the time I managed my allergies and took an antibiotic. Both or neither, no clue.
Then, we moved from Cow Country to Chicken Country. Corn (the major culprit in my downward spiral) became even more of a daily companion. The downward spiral began again...
The first winter, I developed severe pain in my neck and ears again, worsened on the side I slept on, throbbing and pulsing through most of the day, worsened by the cold outside as well, spreading down my neck to my shoulders again. I ran out of Prednisone drops. The eczema worsened, too. It not only never really got better through the spring but by July... I was finally diagnosed with an ear infection.
First, I was treated with a drop, since it's hard to diagnose middle-ear-infections and most adults don't get them. I definitely had an outer ear infection (complete with fluid drainage and swelling). After about a week, I broke down and went to an urgent care facility and was told I probably also had a middle-ear infection since the ear-drum was swollen, red and puss-y. Urgh.
More antibiotics.
By the time I finished this round, nearly all the pain was gone from my head, neck and shoulders again. Coincidence? Not sure... The Pain in my ears returned about a month later and I used the drops again, felt a relief again. The eczema was better with the drops, worse again after I stopped, even with the prednisone (which at this point I was using daily as prescribed rather than a half-dose, one week out of a month as-needed).
Connection between ear infections and Fibromyalgia? Not a clue... except to say that the ears and eczema were directly related to my allergies... allergies that I was exposed to suddenly on a daily basis at the beginning of my ordeal...
Ramblings:
Here's the thing about Fibromyalgia: they really, really, know nothing about it. It's just a name. There are two schools of thought on the disorder.
First, it's said that people with Fibromyalgia have a low tolerance for pain. I would like to say this is a fallacy, perpetuated by studies on sufferers who are already at breaking point and doctors who will grasp at anything to explain the phenomenon. In December of the first year, at the height of my raging pain, made clumsy by sleep deprivation and stumbling around in the darkness twelve times a night to find the bathroom, I broke my littlest toe. Slammed it into the bathroom doorway with such force that it tears sprang to my eyes.
I hesitated for about three seconds while I caught my breath, then hobbled back to bed, slept another two hours, then rose in the morning, dressed, put on my shoes, took my daughter to preschool and my son to the doctor where he was having blood drawn (routine, lead-screening). As I had a moment to rest and sat in the waiting room, my foot began to throb. I realized my shoe seemed tight so I took it off and the sock to look. The entire side of my foot was varying shades of black, blue and red, and swelling more by the moment as I waited. I called my doctor, got an appointment to come in right after I got out from the lab. She was doubtful that I'd managed to break a toe, sleep through the pain, then run errands for an additional two hours without noticing until the swelling made my shoe tighten and press on the toe. Four hours it took me, before I began to wonder what was wrong with my foot enough to actually take my sock off and look.
It was broken, of course. You can't get those beautiful shades of purple (and swelling) without at least a serious sprain. I ask you, does that sound like a person with a low threshold for pain??? No.
The second school of thought is that the pain itself is phantom. The brain sends out signals to the body to hurt, without any injury or over-extension. This is possible and plausible. After all, the pain-signals in the human body are about the most retarded thing God ever thought up. Quite possibly he's laughing about it, as we speak.
Case in point: pain is our body's early warning system. We receive physical trauma-- say, pound our thumb with a hammer. The nerves respond by shrieking at the brain, "We're in trouble, here! Danger, danger!!!" The brain, in turn, hears that shriek and shrieks back at the hands, "Whatever you're doing, stop it, RIGHT NOW!!!" The hand drops the hammer and we stop smashing ourselves with it.
It doesn't stop, though. There is no "antidote" to the chemical scream your nerves send up to your brain. Once you stop smashing yourself with the hammer, the pain doesn't stop. Oh... eventually, the chemical shrieks become fewer as your nerves decide that there's no further danger... but in cases of more serious injury, it goes on and on and on. What should be a warning system turns into corporal punishment. "You hurt me, therefore, I'm going to get even."
But... even as a warning signal, pain falls far short of the mark. The same signals that are sent to Fibromyalgia sufferers that convince us we must surely be dying... are lacking in many cases of terminal disease. A person can be suffering from advanced cancer and never know it. As useful bodily functions go, pain receptors are pretty much asleep at the wheel. We can be given a shot of pain for no reason, and not be given a shot of pain to warn us we really are dying. How useful is that???
But for Fibromyalgia sufferers, they believe that the brain (or is it the nerves?) produce an over-abundance of the "chemical shout" that triggers pain. The brain gets confused, senses threat where there is none and just goes willy-nilly, "StopstopSTOP!!!" (When in question or in doubt, run in circles, scream and shout). It has no idea which nerves are sending out the chemical scream, so it responds by panicking and warning all systems of malfunction. If it hits enough places, it figures sooner or later it'll get the right one, we'll stop hitting our thumb/toe/shoulder/hip/head with the hammer and it can get some peace again.
Can trauma trigger Fibromyalgia? The consensus is, "yes," and I agree. While my pain didn't begin with trauma, my overabundance of pain seemed to be triggered shortly after my fall down the stairs. Perhaps it had nothing to do with it, but then again, maybe my body had had enough and when a serious jolt of pain hit my brain, my brain just didn't know when to stop. Between the pain of pregnancy, of miscarriage, of a D&C (where I was further weakened by anesthesia), the stress of a move from a mild climate to below-zero, inactivity (I've always hibernated in the winter), sleepless nights with a sick child and worry that he wasn't getting better... when I fell down the stairs, my body said, "Dammitall, just STOP!!!"
Perhaps if I'd listened (or if I had had the luxury of listening) things would not have gotten out of hand. Perhaps if I'd meditated or taken yoga, or if I'd simply taken a nap in the afternoon rather than catching up with the mounds of laundry, perhaps if I'd taken care not to fall again, if I'd reacted to nighttime pain by getting more sleep rather than keeping myself awake... maybe my brain wouldn't have punished me. Maybe.
But the fact of the matter is, I didn't listen. I kept plugging away, getting worse and worse, getting more and more depressed as I got less and less sleep and fewer and fewer answers.
Here is my answer. No, it isn't a cure for Fibromyalgia. There is no cure: once you have it, you're likely to trigger again from anything at all. But there is an inoculation for the disease. It's called, "Take a chill pill."
When your body sends out that chemical scream, no matter how difficult it is, listen to it. If your back hurts, don't just take a pill or ignore it. Stretch. Change positions. Study your pain, figure out what's causing it (even if it's as simple as the old joke, "Hey doc, it hurts when I do this." Doc: "So, don't do that.") Rest when you feel tired. Walk around when you feel stiff. Sit outside and listen to the wind and the birds and the lawnmowers on the next block even if your own lawn is a bit tall: it'll keep for another day. You don't have to keep plugging away. Like with carpal tunnel syndrome: if your job hurts you, switch jobs. There is always a reason for pain, even if sometimes it goes haywire. Find out what's causing your pain and if you can't eliminate the source, as least find ways to relieve the reaction from time-to-time.
For current sufferers, this is probably good advice that might help to avoid future triggers. For those who do not yet suffer from it, it's good advice to help avoid ever knowing the sort of pain Fibromyalgia causes.
As for myself... What hurts the most, I think, is that the things I love to do trigger my chemical scream. I can still do them: I can still pound the hammer or push the drill or climb the ladders... but I pay for it. I pay dearly and sometimes daily, right now, and that hurts. I sit some days, following my own advice and resting rather than doing, staring at the 3/4 built playhouse in my backyard, thinking about finishing the interior and I want to cry. How can I tell my brain to STFU long enough to do it? How will I manage to stoop and bend and crane my neck every which way, pushing and pulling and pounding and drilling...??? It seems an insurmountable task, yet I will do it. I promised my children I would and I will.
In the meantime, I sit here instead, wondering if it will ever stop. In a few minutes, I will get up and wander around the yard, ever staring up at my monument to Esher-- the twisting, winding stairs, balconies and ladders that wrap aimlessly but artfully around the outside of the too-small, top-heavy playhouse: planning, thinking about what needs to be done (relieving the stiffness of sitting for too long). But today, I cringe even at the thought of lifting the chop-saw out of the shed and stooping to plug it in. I could hammer, today, but I have nothing to hammer if I haven't cut the pieces.
Maybe tomorrow, I'll begin again. I have another five chapters of a book I began a year ago to write as well, but today is the first time I can sit at a computer in two weeks and it occurred to me that there were more important things to write than epic fantasy.
There's also tragedy.
((Note: my timeline might be off, and some of my self-inflicted injuries may be out of sequence. However, the time-table of suffering for almost precisely one year (starting in the summer of '05 and diagnosis in the winter of '06) is accurate. If I think about it long enough through the haze, then actual time lapsed from onset to complete remission was about two years). It has now been over three years since I've had complete, system-wide pain (though the here-and-theres are bad enough, thanks). Most notably, I'd like to point out that it's starting again...))
What IS Fibromyalgia, you might ask? In simple terms, it's aches and pains that have no apparent cause. Sound suspiciously like, "It's all in your head?" If it does, you're not alone. That's what it sounds like to me.
There is no "cure" for Fibromyalgia, since they haven't even got a clue what causes the pain. Simple pain meds barely put a dent in it (and taking pain meds for a chronic condition is really a no-no). Of course, that doesn't really frighten me, as there's no cure for hyper-mobile joints and eventually if I'm not careful (and no, I'm not careful) I will probably suffer from degenerative arthritis. But treatment for Fibro is "empirical"-- meaning, everything is a shot in the dark and your guess is as good as mine whether it works. Researchers are much heartened by anti-depressant therapy (I am not-- not only can I not take anti-depressants, but only about 40% respond to this treatment. A good shot of Valium might do as well).
But for a person who has been "diagnosed" and questions the verdict, what information is there to allay their doubts and allow them to creep from "denial" to "acceptance"? I've Googled and Goggled and Googled... there don't seem to be many testimonials out there. Each time I find a description of Fibromyalgia, it's clinical, either written by a healthcare practitioner or transcribed by one. Most "self-help" or "actualization" blogs deal with what a person has done that works or doesn't work for them, and descriptions are vague, amorphous and generally tantamount to, "I hurt so bad I wanted to cry." Fine. But how did it hurt? What part of you hurt? Was it all day or just when you did something or other? Was it a burning pain? A shooting pain? A dull ache that just snowballed until you couldn't take it anymore...? We know Fibromyalgia is, literally, pain. But what does that pain feel like???
So I have no way of knowing if I truly have Fibromyalgia (other than, of course, I experience pain that the doctors cannot identify a source for). My "diagnosis" consisted of a doctor pressing into certain parts ("pressure points") and taking note that it was uncomfortable. Not particularly painful, mind you: just a shy bit on the "ugh" side of "heh" for all but two. Since there are 8 required, I think, to diagnose Fibromyalgia, I'm not sure it qualifies. STILL...
Whether or not I actually have Fibromyalgia, I've been diagnosed with Fibromyalgia, so maybe, just maybe, my own testimonial might be helpful for others in varying states of denial. Therefore, maybe, just maybe, there's a good reason to write it all down...
Prestage: neck pain, lower back pain, eczema in the ears (for which a topical prednisone was prescribed). Xrays showed nothing but a small amount of scoliosis and "something" on the film that my doctor asked if I had had any surgeries that they might have left something inside (!) but which the xray technician decided was "nothing." (Nothing???) Night-sweats (which, along with the back pain, started long before the prednisone). Directly preceding all this, I was pregnant and I also started using a memory-foam pillow. Then, when the back pain worsened, we bought a sleep number bed (at which point, the night-sweats began). A link???
Stage One:
The first thing I noticed, if I remember correctly, was pain in my heels. I would wake up in the night with burning, throbbing pain in my Achilles running from back of my ankles all the way down to the flat of my heel. Most of my pain occurred during the night: the weight of my blanket or the weight of my body would inflame it after about two or three hours of inactivity. I was told to take at least 600 milligrams of Ibuprofen twice daily to bring down inflammation. This was the first of the medications I was given.
They say that stress can trigger Fibromyalgia symptoms. At the time this began, I was 36 years old with a new baby (adopted at age seven months). The baby had feeding issues (bulimia and anorexia-- and obviously not the "weight control" kind) and doctors were telling me that he was perfectly healthy, suffering no ill-effects and not failing to thrive. In the meantime, I was constantly covered in vomit and feeding-time (which should have been the epitome of bonding for the newly adoptive mom) had turned into a nightmare of insecurities, frustration and sometimes downright anger. For obvious reasons, my son himself developed anger and frustration issues through this experience. I began to wonder if he was making himself vomit on purpose. Awful, I know, but we were lost, alone and completely unsupported by the people who should have been helping us to overcome this issue. He would eat everything in sight for two weeks and pack on the ounces (once, nearly a pound!) then slowly work down to refusing any food (bottle or jars) until he'd vomit everything I managed to wheedle into him for an entire week. His weight would plummet, his face was thin and haggard, his hair was thin and lank, his skin lacked luster, his teeth came in mottled. Since he wasn't dehydrated and he wasn't "losing weight" (he would gain it all back quickly plus an ounce or two for good measure) the doctors constantly assured me that he was fine. Yet throughout it all, his intelligent eyes stared out at me accusingly, angrily, "Why are you doing this to me?" "Why aren't you helping???" His anger was contagious.
Yes, I was stressed.
((In the months leading up to this most wondrous time in a mother's life, I should also make note that we moved from a temperate climate into one where the snow piled up two-feet deep in the first week we took up residence there, and I suffered a miscarriage the following month. That was five months before our son came to us and about two months before my pain began, so it might have little or no affect on my tale. It did play a factor in my increase of pain from hyper-mobile joints, as tendons and ligaments loosen during pregnancy so perhaps, "Stage One" should actually have been the lower back pain I acquired from a combination of scoliosis and loosening ligaments.))
Stage Two:
The Clumsies. I have no idea whether "The Clumsies" has anything at all to do with my supposed Fibromyalgia. I make note of it for the same reason I make note that I started taking Ibuprofen regularly during stage one: because there might be a connection. Perhaps the connecting factor was lack of sleep: not only had heel pain woken me repeatedly during stage one, but so had an angry, hungry baby who could not sleep through the night (for obvious reasons), was ravenous when fed but just as likely to vomit it all up or refuse the bottle, scratch and pull my hair while slowly starving...
Right, so The Clumsies started now, pretty much. During the month of October (less than two months after my son's arrival) I manged to fall down the stairs-- every mother's nightmare: I was holding my baby son at the time, but twisted myself into a pretzel to protect him, holding onto him for dear life and managing to save him though not myself.
All-in-all, it wasn't a bad spill. I had a small bruise on the small of my back and wrenched my shoulder when I grabbed for the railing to halt 135 pound of me from plummeting head-first to the base of the stairs and landing on top of my fragile son. I came to a halt-- not at the base of the stairs which might have been the outcome had I not been desperate to protect the baby-- but halfway down, on my back, with one arm gripping the railing and the other hanging onto the baby. Most of my weight was taken by my lower-back on the edge of the stair.
Later that same month, I was outside enjoying the sunshine (okay the shade) and typing away on my computer when the monitor told me the baby was awake. I closed up shop and started into the house, caught my big toe in a slightly-raised portion of the patio (one I'd stepped over a million times) and fell flat on my face. I mean, seriously flat on my face. Since I was holding the computer under my right arm, and of course my first thought was not to drop it, I didn't stretch out both arms to save myself. Did no good: when my right elbow struck the pavement, the computer went flying. It still bears the scars of our misadventure... and so do my jeans. I scraped my chin, my elbow and my knee (but I have strong bones, let me tell you... still nothing broken-- not even a rattle in my brain pan). Talk about hurt-hurt-hurt, though...
By November, the pain in my shoulder from the fall down the stairs was no better. And it had moved to the second shoulder. Small tasks like clasping a seat belt or slipping my arm into a jacket were excruciating. Still, there was nothing wrong with me. Just aches and pains that wouldn't go away.
Then the pain followed me to bed...
Stage Three:
By Mother's Day of 2006:
My lower back pain seemed to be spreading to my hips. I couldn't get comfortable at night (despite a Sleep Number bed and a gazillion attempted settings). On my side, I felt as if my hip were being thrust up into the air like Mount Everest, twisting my lower spin unnaturally. On my back, the Achilles pain would start again (from pressure of my heels against the mattress), burning, burning, burning, from the bottom of my heels up to my calves.
In Stage Three, the slightest pressure of my body on the mattress caused... how to describe it??? Dante's Inferno, eternal damnation, torture in the extreme, flayed alive, a monster burnt by torch-wielding villagers...?
I thought I was going to die...
During Stage Three, here's a clinical list of my pain:
Lower back and neck pain: Most likely from a combination of pregnancy loosening my ligaments (which are already loose from HMJS) and scoliosis.
Deep hip pain: It felt as if my legs were being pulled from their sockets
Muscular hip pain: muscles of the lower-back and surrounding the hips were tender and achy, as they might be after a gentle, five mile walk when not accustomed to exercise.
Deep shoulder pain: It felt as if my shoulders were being pulled from their sockets.
Facial Pain: My jaw felt as if it were being pulled from its socket. My ear canals throbbed, my temples throbbed. The sensation was similar to a burning fever, and yes, the skin felt hot to my touch and always felt hot "inwardly" (in other words, even if I wasn't feverish, I felt hot to myself, though maybe not to the touch). Ear pain began in the "lymph node" below the earlobe, and traveled down to my shoulder, meeting up with the shoulder pain. Head, neck, shoulder pain all seemed to be one.
The thing that should be noted here: all pain was one-sided, though it occurred in both sides. How is that possible? you might ask. Because whichever side I slept on hurt. Yes, whatever part of me touched the bed felt like poisonous gangrene had set in during the night. I am the Princess and my entire bed was The Pea. My pillow-- even the light, fluffy, thin down pillow I bought in reaction to the facial pain from a "firm" fiberfill pillow-- weighed against my ears and jaws as if I was sleeping on a log. If I slept on my back, hoping to spare my face, shoulders and hips, the weight of my own feet and chest would start the pain in my heels and shoulder blades. If I bent my knees to compensate, the weight of the blanket was unbearable.
During Stage Three, I slept only about two hours at a time. During Stage Two, I would awaken, but change positions and fall back asleep. During Stage three, there was no position, since I had already woken and changed positions to relieve pain on one side during the night and by that time, both sides hurt. Like most normal people, when I wake fully, I have to pee. Immediately and unquestionably. If I try to put it off, I only become more awake. So... waking fully from pain, being aggravated by hydraulic pressure, actually having to get out of bed to relieve some portion of discomfort so I could delude myself into another hour of "rest."
Basically, though Stage Three is system-wide pain, it's also characterized by sleep-deprivation. I would stay up as late as I could-- until I felt nauseous and dizzy from fatigue-- then drop into a hopeless sleep. I imagine I "slept" about six hours nightly (defining "sleep" as the time I drop off to the time I get out of bed), but actual sleep-time was nearer to three or four hours a night. Most mornings I was driven from bed not from a sense of duty but because one more hour of sleep would be excruciating rather than restful. Being in bed was torture.
Stage Four:
Begging for help. The doctor tested me for Lupis, Lyme and ummm... MS? My Rh factor was normal (rheumatoid arthritis). Then she sent me to a rheumatism specialist. He poked me here and there and told me I have Fibromyalgia.
Of course I'm depressed, you ninnies!!! One sign of Fibromyalgia is depression. Good GOD people. Of course we're depressed. Wouldn't you be, if you'd just spent the last year in pure hell, sleep-deprived, frightened, wondering if you were going to die??? Unable to move from the pain but lack of movement makes it worse? Having to choose between the aches and pains caused by everyday activities and the burning torture of trying to rest? Exhaustion, fatigue AND pain. You know... there are tortures used by governments that are less torturous and break the spirit and will-to-live of their victims. Please... Do NOT inform me that a symptom of Fibromyalgia is depression. I'm crying because every signal my body sends me is, "Help me, help me! We're going to die!!! Do something!!!" Sleep deprivation is actually the least of my worries: it contributes to the problem, sure... but if I'm waking during the night, it means I will actually wake up in the morning. I'm not dead. If it hurts this badly, I'm still alive, I made it through one more night, I'm going to live...
Through all the pain, through all the frustration and fear and hopelessness... I clung to that one point: I woke up!!!
So... the "joint doctor" suggested anti-depressants (because, as I said, treatment is empirical and of course they just throw out anti-depressants automatically for those who are sleepless or crying). Anti-depressants make me psycho. I mean, "psychotic." Not even an option in my wildest dreams, even if I WASN'T suffering from clinical depression (anti-depressants are for clinical depression. Depression from trauma-- psychological or physical-- is called SITUATIONAL depression and normally resolves when the trauma is dealt with. In my opinion, prescribing anti-depressants for anything but clinical depression is negligent). The specialist shrugged, said, "Have it your way," and sent me back to my General Practitioner.
My MD sent me to occupational therapy (for which our insurance decided it applied to our deductible and we not only had to pay 100% but the deductible renewed after one month, since I was diagnosed in December and our benefits rolled over in January).
The therapist identified scoliosis as the source for my lower back pain, along with HMJS worsening from pregnancy (I was shocked-- my miscarriage had been in February of '05, this was December '06 and the loosening ligaments had lasted that long???) I began to wonder if the shoulder and hip pain (which felt as if my joints were being pulled from their sockets when I rested on them) was also a symptom of this syndrome. It remains a mystery. Exercises did help to relieve some of my back pain: at least while I was doing them, it felt so good... though the pain persisted-- kind of like rubbing an aching muscle: it still hurts afterward, but the massage feels great.
Stage Five:
Spontaneous Remission. Okay, this is something else indicative of Fibromyalgia: eventually, it gets better. They don't know why it gets better any more than they know what causes it. It get better for no reason, then something may trigger it again and start the cycle over again. It might be never-ending, and it might be only once.
By May of the following spring, I was feeling marginally better: mainly because the sun was out though it was still chilly and I could sit in a protected corner and soak it up. All right, so I'm risking skin-cancer. But it just felt so GOOD. Feeling chipper by noon goes a long way to alleviate feelings of doom and gloom and hopelessness in the morning. Sunshine helps, as does the fact that I didn't need to bundle up in twenty layers to go outside and walk about a bit. My ears and head felt significantly better, once the warmth of the sun hit my face. Maybe it was plain old vitamin D deficiency since I can't drink milk. Maybe chattering teeth affects the brain-pan. Whatever the case, my outlook was significantly changed even if the pain was only marginally better.
Then the allergies hit.
I have never really had more than mild seasonal allergies. The ear eczema (I now know) is caused by an allergy to something. I've been diagnosed off and on with irritable bowel syndrome (even though my main symptom was diarrhea and not constipation) along with a whole host of everything else that might affect my UT or digestion. What I hadn't done (at least, not since I was eight) was visit an allergist.
By July, I was down with bronchitis. If you've never experienced night-time pain or Fibromyalgia pain, you can't understand the torture. Coughing spasms wrack every part of your body, even those five inches that didn't already hurt. Weakness from infection and exhaustion from coughing half the night add to hopelessness. Lying in bed half the day because you're too sick to do anything, with a fever of 103 when you already felt feverish...
I slept in the basement (because it was cooler, more humid, and relieved my family of the stress of my coughing). I slept with an ice pack, which not only cooled me down but relieved that cyclical coughing caused by coughing too hard, overheating and unable to stop coughing. Wake up, grab the ice pack, hobble upstairs to the bathroom, blow my nose, curl back up... sleep another hour...
But the cold intensified my head and neck pain. Urgh...
A round of antibiotics later, I was feeling better than I had for a year. By the time my poor, cough-wracked ribs had recuperated, my shoulder pain was pretty much gone (whereas, I hadn't been able to slip on a jacket without gasping since fall).
So what does bronchitis and allergies have to do with Fibromyalgia?
Maybe nothing, who knows. Maybe everything. First, I discovered that I was allergic to many substances in my environment (which caused the infection, eventually) and second, I discovered I had food allergies. Some of the environmental factors were also in my food!!!
There's the possibility that the antibiotics had an effect. It's also possible that avoiding food allergies and taking a regular antihistamine had an effect. Whichever was the case, I slowly climbed up from the abyss about the time I managed my allergies and took an antibiotic. Both or neither, no clue.
Then, we moved from Cow Country to Chicken Country. Corn (the major culprit in my downward spiral) became even more of a daily companion. The downward spiral began again...
The first winter, I developed severe pain in my neck and ears again, worsened on the side I slept on, throbbing and pulsing through most of the day, worsened by the cold outside as well, spreading down my neck to my shoulders again. I ran out of Prednisone drops. The eczema worsened, too. It not only never really got better through the spring but by July... I was finally diagnosed with an ear infection.
First, I was treated with a drop, since it's hard to diagnose middle-ear-infections and most adults don't get them. I definitely had an outer ear infection (complete with fluid drainage and swelling). After about a week, I broke down and went to an urgent care facility and was told I probably also had a middle-ear infection since the ear-drum was swollen, red and puss-y. Urgh.
More antibiotics.
By the time I finished this round, nearly all the pain was gone from my head, neck and shoulders again. Coincidence? Not sure... The Pain in my ears returned about a month later and I used the drops again, felt a relief again. The eczema was better with the drops, worse again after I stopped, even with the prednisone (which at this point I was using daily as prescribed rather than a half-dose, one week out of a month as-needed).
Connection between ear infections and Fibromyalgia? Not a clue... except to say that the ears and eczema were directly related to my allergies... allergies that I was exposed to suddenly on a daily basis at the beginning of my ordeal...
Ramblings:
Here's the thing about Fibromyalgia: they really, really, know nothing about it. It's just a name. There are two schools of thought on the disorder.
First, it's said that people with Fibromyalgia have a low tolerance for pain. I would like to say this is a fallacy, perpetuated by studies on sufferers who are already at breaking point and doctors who will grasp at anything to explain the phenomenon. In December of the first year, at the height of my raging pain, made clumsy by sleep deprivation and stumbling around in the darkness twelve times a night to find the bathroom, I broke my littlest toe. Slammed it into the bathroom doorway with such force that it tears sprang to my eyes.
I hesitated for about three seconds while I caught my breath, then hobbled back to bed, slept another two hours, then rose in the morning, dressed, put on my shoes, took my daughter to preschool and my son to the doctor where he was having blood drawn (routine, lead-screening). As I had a moment to rest and sat in the waiting room, my foot began to throb. I realized my shoe seemed tight so I took it off and the sock to look. The entire side of my foot was varying shades of black, blue and red, and swelling more by the moment as I waited. I called my doctor, got an appointment to come in right after I got out from the lab. She was doubtful that I'd managed to break a toe, sleep through the pain, then run errands for an additional two hours without noticing until the swelling made my shoe tighten and press on the toe. Four hours it took me, before I began to wonder what was wrong with my foot enough to actually take my sock off and look.
It was broken, of course. You can't get those beautiful shades of purple (and swelling) without at least a serious sprain. I ask you, does that sound like a person with a low threshold for pain??? No.
The second school of thought is that the pain itself is phantom. The brain sends out signals to the body to hurt, without any injury or over-extension. This is possible and plausible. After all, the pain-signals in the human body are about the most retarded thing God ever thought up. Quite possibly he's laughing about it, as we speak.
Case in point: pain is our body's early warning system. We receive physical trauma-- say, pound our thumb with a hammer. The nerves respond by shrieking at the brain, "We're in trouble, here! Danger, danger!!!" The brain, in turn, hears that shriek and shrieks back at the hands, "Whatever you're doing, stop it, RIGHT NOW!!!" The hand drops the hammer and we stop smashing ourselves with it.
It doesn't stop, though. There is no "antidote" to the chemical scream your nerves send up to your brain. Once you stop smashing yourself with the hammer, the pain doesn't stop. Oh... eventually, the chemical shrieks become fewer as your nerves decide that there's no further danger... but in cases of more serious injury, it goes on and on and on. What should be a warning system turns into corporal punishment. "You hurt me, therefore, I'm going to get even."
But... even as a warning signal, pain falls far short of the mark. The same signals that are sent to Fibromyalgia sufferers that convince us we must surely be dying... are lacking in many cases of terminal disease. A person can be suffering from advanced cancer and never know it. As useful bodily functions go, pain receptors are pretty much asleep at the wheel. We can be given a shot of pain for no reason, and not be given a shot of pain to warn us we really are dying. How useful is that???
But for Fibromyalgia sufferers, they believe that the brain (or is it the nerves?) produce an over-abundance of the "chemical shout" that triggers pain. The brain gets confused, senses threat where there is none and just goes willy-nilly, "StopstopSTOP!!!" (When in question or in doubt, run in circles, scream and shout). It has no idea which nerves are sending out the chemical scream, so it responds by panicking and warning all systems of malfunction. If it hits enough places, it figures sooner or later it'll get the right one, we'll stop hitting our thumb/toe/shoulder/hip/head with the hammer and it can get some peace again.
Can trauma trigger Fibromyalgia? The consensus is, "yes," and I agree. While my pain didn't begin with trauma, my overabundance of pain seemed to be triggered shortly after my fall down the stairs. Perhaps it had nothing to do with it, but then again, maybe my body had had enough and when a serious jolt of pain hit my brain, my brain just didn't know when to stop. Between the pain of pregnancy, of miscarriage, of a D&C (where I was further weakened by anesthesia), the stress of a move from a mild climate to below-zero, inactivity (I've always hibernated in the winter), sleepless nights with a sick child and worry that he wasn't getting better... when I fell down the stairs, my body said, "Dammitall, just STOP!!!"
Perhaps if I'd listened (or if I had had the luxury of listening) things would not have gotten out of hand. Perhaps if I'd meditated or taken yoga, or if I'd simply taken a nap in the afternoon rather than catching up with the mounds of laundry, perhaps if I'd taken care not to fall again, if I'd reacted to nighttime pain by getting more sleep rather than keeping myself awake... maybe my brain wouldn't have punished me. Maybe.
But the fact of the matter is, I didn't listen. I kept plugging away, getting worse and worse, getting more and more depressed as I got less and less sleep and fewer and fewer answers.
Here is my answer. No, it isn't a cure for Fibromyalgia. There is no cure: once you have it, you're likely to trigger again from anything at all. But there is an inoculation for the disease. It's called, "Take a chill pill."
When your body sends out that chemical scream, no matter how difficult it is, listen to it. If your back hurts, don't just take a pill or ignore it. Stretch. Change positions. Study your pain, figure out what's causing it (even if it's as simple as the old joke, "Hey doc, it hurts when I do this." Doc: "So, don't do that.") Rest when you feel tired. Walk around when you feel stiff. Sit outside and listen to the wind and the birds and the lawnmowers on the next block even if your own lawn is a bit tall: it'll keep for another day. You don't have to keep plugging away. Like with carpal tunnel syndrome: if your job hurts you, switch jobs. There is always a reason for pain, even if sometimes it goes haywire. Find out what's causing your pain and if you can't eliminate the source, as least find ways to relieve the reaction from time-to-time.
For current sufferers, this is probably good advice that might help to avoid future triggers. For those who do not yet suffer from it, it's good advice to help avoid ever knowing the sort of pain Fibromyalgia causes.
As for myself... What hurts the most, I think, is that the things I love to do trigger my chemical scream. I can still do them: I can still pound the hammer or push the drill or climb the ladders... but I pay for it. I pay dearly and sometimes daily, right now, and that hurts. I sit some days, following my own advice and resting rather than doing, staring at the 3/4 built playhouse in my backyard, thinking about finishing the interior and I want to cry. How can I tell my brain to STFU long enough to do it? How will I manage to stoop and bend and crane my neck every which way, pushing and pulling and pounding and drilling...??? It seems an insurmountable task, yet I will do it. I promised my children I would and I will.
In the meantime, I sit here instead, wondering if it will ever stop. In a few minutes, I will get up and wander around the yard, ever staring up at my monument to Esher-- the twisting, winding stairs, balconies and ladders that wrap aimlessly but artfully around the outside of the too-small, top-heavy playhouse: planning, thinking about what needs to be done (relieving the stiffness of sitting for too long). But today, I cringe even at the thought of lifting the chop-saw out of the shed and stooping to plug it in. I could hammer, today, but I have nothing to hammer if I haven't cut the pieces.
Maybe tomorrow, I'll begin again. I have another five chapters of a book I began a year ago to write as well, but today is the first time I can sit at a computer in two weeks and it occurred to me that there were more important things to write than epic fantasy.
There's also tragedy.
((Note: my timeline might be off, and some of my self-inflicted injuries may be out of sequence. However, the time-table of suffering for almost precisely one year (starting in the summer of '05 and diagnosis in the winter of '06) is accurate. If I think about it long enough through the haze, then actual time lapsed from onset to complete remission was about two years). It has now been over three years since I've had complete, system-wide pain (though the here-and-theres are bad enough, thanks). Most notably, I'd like to point out that it's starting again...))
Friday, February 12, 2010
What you don't know can hurt you...
...Is it just me, or is "third-hand smoke" just really going too far? Tiny particulates that originate in the tobacco you puff-- outside, in your car, nowhere near your children-- can now kill them. These particulates are invisible, ineradicable, impossible to scrub, shampoo or launder away...
I cry "bullshit."
First of all, they claim these particulates are deadly, not in and of themselves, but because they bond with toxins already in our environment to form a cancerous soup. What aren't they telling us...?
They aren't telling us that these toxins already in our environment are a product of our culture, our society and our government's all-fired, full-force gambit to "keep us safe." These toxins are called VOCs. They exist as a product of "civilization" and they're already causing cancer, asthma-- in fact, a whole slew of autoimmune and respiratory diseases. They are in the paint we put in our walls-- they are in the walls themselves-- in the plastics, vinyls and adhesives as part of our dinnerware, furniture and television set. They are in the polyurethanes on our cabinetry, our floors, the trim on our walls. They are in our carpets, the padding under our carpet, the plywood under the padding under our carpet... They are in the laminate in our kitchens (and the adhesives under that, and the caulking...) and the foam in our mattresses. They are part of the "fire-retardant" additives embedded in our children's pajamas, our living room draperies, our sheets, our blankets, our teddy bears... Memory foam? VOCs... man, they make for a comfortable sleep. Think your down pillow is immune? Not so... even "natural" products are required by law to be treated by flame-retardant, the fabric covers permeated. Mildew resistant? Probably... those VOCs are everywhere, not just in the cleaners you use to burn that mildew out of your shower... And they're probably only one of the "environmental toxins" made more deadly.
Third hand smoke.
The invisible particulates from cigarette smoke bind to the toxins in our environment, not making them deadly, but making them more deadly.
Don't get me wrong. I think everyone should quit. I've done it... three, maybe four times. I plan to do it again, soon.
But I cry "bullshit" because when the article hits the mainstream public, the average Jane Grundy is going to jump on the bandwagon and call for more stringent laws against tobacco use, is going to demand more incentives to quit, is going to nag her poor sister to death daily, despising her, threatening to take her children away because she can't quit smoking because even her clothing is now deadly. She smokes outside. She never smokes in the car with her kids, or in her house. She would never dream of taking her children to a party where people will be puffing away indoors. But she's still killing her children...
Ms. Grundy will either ignore or completely overlook the environmental toxins that are already killing every man, woman and child in America. Because... well, it's easy to point the finger on the chimney outside the supermarket and scream, "SHUN HER!!!" but it's not so easy to accept that our lifestyles, no matter how "healthy" are killing us all.
Little by little, low-VOC paint and adhesives are making their way into the marketplace, but it isn't enough to just make them available. Public education is necessary to encourage people to buy them and to eschew the old ways. Government intervention is necessary, to end the poisoning of our children. BPA free plastics? Yes, we see them on the shelves. We wonder that that label should mean something to us. We see that it's a bit more expensive than the other stuff... we shrug and put it back, picking up those sippy cups that cost only $5 for 6, so we won't go bankrupt if junior throws one out the window...
No, far simpler to scream for the regulation of tobacco use. Smoke is what's killing us. After all, there's now something called "third-hand smoke." Hadn't you heard?
I cry "bullshit."
First of all, they claim these particulates are deadly, not in and of themselves, but because they bond with toxins already in our environment to form a cancerous soup. What aren't they telling us...?
They aren't telling us that these toxins already in our environment are a product of our culture, our society and our government's all-fired, full-force gambit to "keep us safe." These toxins are called VOCs. They exist as a product of "civilization" and they're already causing cancer, asthma-- in fact, a whole slew of autoimmune and respiratory diseases. They are in the paint we put in our walls-- they are in the walls themselves-- in the plastics, vinyls and adhesives as part of our dinnerware, furniture and television set. They are in the polyurethanes on our cabinetry, our floors, the trim on our walls. They are in our carpets, the padding under our carpet, the plywood under the padding under our carpet... They are in the laminate in our kitchens (and the adhesives under that, and the caulking...) and the foam in our mattresses. They are part of the "fire-retardant" additives embedded in our children's pajamas, our living room draperies, our sheets, our blankets, our teddy bears... Memory foam? VOCs... man, they make for a comfortable sleep. Think your down pillow is immune? Not so... even "natural" products are required by law to be treated by flame-retardant, the fabric covers permeated. Mildew resistant? Probably... those VOCs are everywhere, not just in the cleaners you use to burn that mildew out of your shower... And they're probably only one of the "environmental toxins" made more deadly.
Third hand smoke.
The invisible particulates from cigarette smoke bind to the toxins in our environment, not making them deadly, but making them more deadly.
Don't get me wrong. I think everyone should quit. I've done it... three, maybe four times. I plan to do it again, soon.
But I cry "bullshit" because when the article hits the mainstream public, the average Jane Grundy is going to jump on the bandwagon and call for more stringent laws against tobacco use, is going to demand more incentives to quit, is going to nag her poor sister to death daily, despising her, threatening to take her children away because she can't quit smoking because even her clothing is now deadly. She smokes outside. She never smokes in the car with her kids, or in her house. She would never dream of taking her children to a party where people will be puffing away indoors. But she's still killing her children...
Ms. Grundy will either ignore or completely overlook the environmental toxins that are already killing every man, woman and child in America. Because... well, it's easy to point the finger on the chimney outside the supermarket and scream, "SHUN HER!!!" but it's not so easy to accept that our lifestyles, no matter how "healthy" are killing us all.
Little by little, low-VOC paint and adhesives are making their way into the marketplace, but it isn't enough to just make them available. Public education is necessary to encourage people to buy them and to eschew the old ways. Government intervention is necessary, to end the poisoning of our children. BPA free plastics? Yes, we see them on the shelves. We wonder that that label should mean something to us. We see that it's a bit more expensive than the other stuff... we shrug and put it back, picking up those sippy cups that cost only $5 for 6, so we won't go bankrupt if junior throws one out the window...
No, far simpler to scream for the regulation of tobacco use. Smoke is what's killing us. After all, there's now something called "third-hand smoke." Hadn't you heard?
Wednesday, January 20, 2010
Sufferage and Pride
Why We Don’t Want Men to Vote be President
Alice Duer-Miller, 1915
- Because man's place is in the army.
- Because no really manly man wants to settle any question otherwise than by fighting about it.
- Because if men should adopt peaceable methods women will no longer look up to them.
- Because men will lose their charm if they step out of their natural sphere and interest themselves in other matters than feats of arms, uniforms, and drums.
- Because men are too emotional to
votebe president. Their conduct at baseball games and political conventions shows this, while their innate tendency to appeal to force renders them unfit for government.
At parties (yes, when everyone’s had one or two), the question always comes up—where do you stand on having a black president? The Conservatives and Liberals duke it out between themselves, the arguments becoming more and more urgent, more and more dramatic, as more and more beer is consumed. My husband is a Liberal, and therefore the fore-runner for Ass with the Loudest Mouth at parties here in the Heartland of Conservatism.
Sooner or later, the quiet ones gather around me. We smile and nod and roll our eyes. There is strength in numbers: the non-political, the live-and-let-live, the ones who don’t gas up their vocal chords with gallons of beer… How about those Phillies? Haha… yeah, I think they have a real chance, this year…
Oddly enough, the wives rather avoid me. Perhaps because though they don’t share their mates’ passion for politics, they feel rallying around me would be a betrayal, while their husbands battle it out in the bonfire arena with mine. They roll their eyes, too. Some of them look angry, as if they’d like to drag their spouses away… But the look of fondness is predominant as their glittering eyes follow their husbands’ sodden logic, explaining Why This Country’s Going to Shit. Immigration, taxation, and yes—voting in a black president. Oddly enough, I think the issue is more voting in a Democrat during a time of “war,” but it’s become a more interesting tirade for Conservatives to point out that he’s also the first Black president…
No, they’re not racist. But they honestly believe that the only reason he got the job was that people were voting for his skin-color to win. Had nothing to do with economic depression, that there’s been a Republican in office for 8 years who pretty much ran us into a sink-hole, or that most of us are heartily sick of looking like Rednecks to the rest of the world, and being made a laughingstock. Maybe we wanted an educated man, for a change, one who didn’t come from a long line of Politicians and corrupt businessmen…
But for whatever reason, it’s the Leftover Husbands (and the Single Guys, and the Wife Stayed Home Husbands) who circle around me in sympathy at parties as they watch my husband don his metaphorical lampshade, climb up on his beer-damp soapbox, and provide the dubious Voice of Reason on an issue that’s been beaten to death with a soggy noodle at every party since the election. Why, you might ask, am I surrounded by the Leftovers rather than the other wives?
Curiosity. “What’s it like to be his wife? Does he drive you crazy? Do you agree with him?” And sympathy… I’m so quiet… how do I feel about the issue? Am I proud to have a Black president…?
Skip back a few months to the election. Ol’ Magpie glued to the TV set, watching as each state rolls in… high-fiving, hugging her kids, weeping when the final results are announced… For the first time in my entire life, I’m proud of
Skip forward again, to the party. I smile an enigmatic smile and say, “A Black man is president, yes. I’m very glad Obama won the election, because I agree he was the best candidate. And I’m very glad that the man I felt was the best candidate was voted in despite his skin-color. It makes me proud.
“But he’s still a man.”
Wait—what? We’re confused… Are you or are you not happy to have a Black president?
GOD yes… Hell, the Blacks of this nation have been held voiceless long enough. Senators and Governors are all well and good, but it’s time and time enough to break through the barriers and admit that at least one of them is suitable for the highest Office in our grand nation. At least ONE of them is as good as, say, a Bush or a Clinton. Do I think that his being Black makes him more likely to screw up, to sympathize with the “wrong” people, to make poor decisions based on a different upbringing…? Nope. What I see, what I still see, is that a man is president. He is neither more nor less likely to screw up than any other man who’s held office. There is no difference, to me, in judging his performance in office… He’s just a man, like any other President since the dawn of our nation…
I am an American, and I feel a great pride that
But RIDDLE ME THIS, BOYS. I am neither a man, nor Black. How am I to identify? How am I to feel a personal sense of vindication?
I wept when they announced the results—not because we had a Black president—but because I could empathize with the rejoicing, the liberation, the sense of victory that Blacks must (and did) feel at that moment. I was one with them, but for me, it’s a hollow victory.
To the confused men in the football jerseys, holding their plastic cups in slack hands and staring at me as if I were an alien, I elaborate. “The fifteenth amendment, declaring that all men have the right to vote, regardless of race, creed or color, was passed in 1865. The nineteenth amendment, declaring that women had as much right to choose their governance as men, was passed in 1920.
“Naturally, it’s only fitting that—since they were acknowledged as human beings in our country years before women were—a black won the Presidency first. I think Obama’s a great guy, but he has exactly the same potential as every other politician before him, every other man before him: neither good, nor evil, just a man.
“Ask me again, when a woman holds that office. If we live that long…”
At first, they think I’m joking. A few awkward chuckles, quickly smothered by a gulp of beer so they can look away. Then the foot-shuffling begins… and suddenly they find my husband’s tirades interesting and hilarious. Eyes evade mine… they drift away… “How ‘bout those Phillies?”
I don't deny that Blacks have had a harder battle than women. I don't deny that the angle of discrimination against Blacks has been more violent, more oppressive, than that against women. But the battle was fought, none-the-less, because both were viewed as less than fit human beings. Both were judged as incompetent to make their own decisions, to hold the right to a Voice.
Why is it wrong of me to qualify my elation at having a Black president? Why does it make everyone so uncomfortable that I long for a president that represents me, half of our great nation? Women are considered a minority, despite our numbers. Why? Because our voice is small…
Is it my opinion that Hillary Clinton should be president right now? I dunno… she was a strong candidate, a suitable leader. A good person? Eh… I don’t know that, either. Obama is certainly more likeable as a human being: that boyish grin, the mild manners, the sweetness of having two little girls to father. Nurturing. Hillary was torpedoed (or torpedoed herself) by displaying too much aggression, a momentary lapse of judgment, a ruthlessness more suitable (and excusable) in male candidates. In short, she was unfeminine and unladylike. The jokes during
I have heard so many time—mainly in Conservative circles, but that is only because I was raised in Conservative circles—that women are unfit for the Presidency because they’re incapable of the aggression and ruthlessness necessary to lead the wealthiest and most powerful nation in the world. And of course, if a woman displays these qualities so highly prized in men, she’s no longer a woman, no longer likable. She thinks she’s a man…
When trolling around for the dates for this blog, I found a quote by Alice Duer-Miller (sited at the beginning of this article): a satirical response to the presiding sentiment of the era surrounding Women’s Sufferage. She turned about all the arguments regarding why women should not be given the right to vote and applied them sarcastically to men. They were fighting against the pre-conceived notion that most women didn’t really want to vote and were probably ill-qualified to exercise that right, even if they had it. The notion that government was a man’s past-time and that, somehow, a woman who had an interest in it was somehow no longer womanly… A woman who wanted her voice heard was most likely jealous of men, and wanted to be a man, herself…
When I found that quote, I was shocked by how little things have changed.
Men have spent generations and generations, building an entire culture around male-supremacy, convincing even the women that women are unsuited to govern themselves and should not be given power over a nation of men. We laugh at the jokes. We view female candidates as somehow lacking… either they’re too aggressive or too wishy-washy (okay, or too mentally unstable, considering our most recent candidate for Vice President). We judge them, because they’re willing to give up raising their children to raise a nation. We judge them, because they delude themselves that they could juggle femininity with capability. We judge them for conforming to our conception of the perfect politician, while requiring them to conform.
We judge ourselves, and have found ourselves lacking.
It’s time that we as women accept that we are just as capable as men. That we don’t have to be men, to be capable. That as human beings we are neither more nor less qualified to have an opinion than men, or to be right.
As for the people who think I’m joking, or a bra-burner, or that my statements are in poor taste and non-sympathetic to blacks…
Uhura in 2016. I think that says it all…
Yeah... I'm more Liberal than my husband. Now… how ‘bout those Phillies?
Monday, January 18, 2010
A first quote...
This is a very short blog, to honor a very wise, generous, funny, amazing woman.
"Love is Love...no limitations may be placed on it, except in our own minds. It can be as big & encompassing as we can imagine, or as small & personal as we need." --Susie Keeney Edwards (It's officially a quote, now, baby!)
"Love is Love...no limitations may be placed on it, except in our own minds. It can be as big & encompassing as we can imagine, or as small & personal as we need." --Susie Keeney Edwards (It's officially a quote, now, baby!)
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