Refocus on what works: In memoriam

Debbie died yesterday. She was a never-failing source of encouragement and intelligent support on one of my key online CRPS support groups.

She died on the table, while undergoing a medical procedure. I don’t know exactly what it was, and given my respect for patient confidentiality, it’s none of my business.

She’s the first person to die of my disease, to whom I felt personally attached. Needless to say, it’s sobering as hell.

I’ve written about the need to attribute deaths from this disease correctly. I’m preparing my own final papers. These thoughts are nothing new.

But today, they are biting deep.

I’ve recently become highly politicized over rights abuses and intolerable corporate stature in my country. I have privately — and quietly — become convinced that the US healthcare system is so completely predatory, so opposed to its own mandate, that it will never offer healing for anyone in my position.

Debbie’s death has broken through my professional anxiety about appearing detached and scientifically sound. I have, at long last, become politicized about the most important subject in my life, after 25 years of personal and professional involvement up to my back teeth.

I have minimized my discussion here of what actually works. That dishonest omission has done us all a great disservice. I’m going to discuss what works, whether or not it’s FDA approved, pharmaceutically profitable, or adequately studied.

Medical studies are a shining example of the fact that we inspect what we expect, not necessarily what we need. The fact that studies have not been done on most modalities, or not rigorously done in double-blind experiments, doesn’t mean the modalities don’t work.

It means the studies need to be done. Period.

Where I understand the mechanisms of action, I will explain them. Where studies don’t exist, I’ll detail what should probably be explored.

But I have had enough of silence. I will not die as Debbie did. I will not die on the table. I certainly will not die saturated with soul-destroying pharmaceutical-grade poisons, as so many of us do.

I will find a better way. I will find a way that works. I’ll do my best to persuade others to study the modalities involved, and to fund the studies. My legislators will learn to recognize my name on sight, because their slavish debt to the pharmaceutical industry is absolutely intolerable and it’s up to me, and others like me, to convince them of that.

I wish Debbie a painless and peaceful rest. I hope her extraordinary husband finds enough strength and comfort to manage life without her.

For myself, I want the intelligence, resources and strength to find a solid cure, make it happen, and spread the word.

No more silence. It’s too much like consent or, worse, collusion.

I do not consent to the deaths of my friends.

With my eyes now open, I’ll no longer collude.

Let’s find a real way out.

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Intestinal Fortitude: a dirty story

Back by popular demand … My crappiest Christmas ever — a comedy.

Caveat emptor: This is not something to read before dinner, unless you’re as strange as me.

Chapter 1: Welcome to the wonderful world of Isy

I have developed such a number of work-related hand injuries that there’s nothing like it in the medical literature. Leave it to me to make history in such a feeble way.

I had a ganglion removed from the inside of my right wrist, just over a year ago. Subsequently, I developed a neuroma which was related to the surgery, carpal tunnel which was related to the ganglion, and radial tendonitis apparently out of pure cussedness. The tendonitis got so bad the radial nerve itself got involved.

Cue to second surgery — December 23rd, 2001, I got a new wrist for Christmas: my carpal tunnel was released, the neuroma on the back of my hand was removed, and a nick was taken out of my radial muscle to give my irritated radial nerve some much-needed room. The only thing to be worried about, the surgeon said, was if the nerve got trapped in the scar tissue. (You can see it coming, can’t you?)

First, I had trouble getting the post-op pain managed. Since a large part of my forearm and hand had just been flayed, pain was a real issue. The Vicodin made me dopy (which wasn’t too bad), and horribly nauseous (which was.) So my surgeon prescribed Phenergan for the nausea, which made me even sleepier than the Vicodin alone; but, without the nausea to consume my attention, it was clear that Vicodin wasn’t cutting the pain. So he gave me Percocet instead of Vicodin, which made me wackier still AND made me more nauseous than ever. Back on the Phenergan and bye bye brain!

I had a trip planned to see my folks and show off my cast. Linda took me to the airport and had the bright idea of taking Dramamine instead of Phenergan, so I could take my pain meds without alarming the neighbors with wanton drooling and wordless babble. It worked so well that the flight was, in fact, better than the previous two days at home on my couch had been.

Chapter 2: Gumming up the works

Turns out I flew into a horrendous tummy virus the entire DC-area family had, but thanks to my relentless handwashing and disinfecting the doorknobs, I avoided it. That was a miracle, but it may have been my first mistake . . .

Within a couple of days, my insides came to a grinding halt. Stopped up like epoxy.

It was awful. Couldn’t get anything in, couldn’t get anything out.

I stopped taking the Percocet, which had undoubtedly caused it, and tried to hustle things along. Water, fiber, laxatives, Colace, you name it. I used to be a Registered Nurse — ER, ICU, HIV, Home Care; a varied career, but interesting, and it left me with a comprehensive knowledge of how to cope with intransigent innards.

The growing pain, I knew, was partly due to the growing pile of garbage in my gut, so moving things along would solve several problems.

After chugging a few oz.s of a particularly effective cathartic, instead of going Number Two, I wound up FACING the loo and heaving everything I’d eaten for the past 18 hours. Once I could breathe again, in a burst of uncharacteristic sanity, I told Mom (in a bored voice) to grab a book and take me to the ER.

Younger brother Huck, bless his heart, drove over from his in-laws and arrived shortly after I had gotten a gurney and laid my sorry ass down. The three of us kept each other in stitches, and got at least a giggle out of everyone who came into the room. This was a great relief because all I could do in the waiting room was weep with the sheer, all-consuming misery. Once on my home turf, with no tedious shift duties to manage, and with two of my family to entertain and amuse, things improved.

For me, anyway.

Mom was frankly astonished at the way I spoke to the nurses. She was discomposed by what she saw as my dictatorial manner. Coming from her, of course, I thought “dictatorial manner” was priceless, but, more to the point, I was perfectly in my element — I loved working in the ER, and here I was in an ER where I knew exactly what needed to happen but somebody else had to do the messy part. Woo hoo!

My first nurse was new to the profession — perfectly happy for help and advice, especially when it came to starting IV’s. I told her I was a hard stick, and why: tough skin, leathery and highly-innervated (very sensitive) vessels, lots of valves in my veins, and — since I was both out of shape and dehydrated — my veins were tiny.

After one disastrous attempt, she dashed off and got somebody else.

That somebody else listened to my description, took one look, literally blanched, and ran off to get a third person. (I could tell by that that she was a more experienced nurse: never blow a vein needlessly.)

Bless her heart, person No. 3 got it in, first try. She turned out to be an ER technician who’s graduating nursing school this year. That young woman’s got a bright future.

Even the ones who got scared off were entertained. Two or more Aweighs in one spot always seems to turn into a movable feast of unabashed commentary and shameless wordplay. Mom and Huck entertained each other endlessly over my steel-plated veins… Bullet-proof skin… Vacuum-sealed gut… Armor-piercing eyelashes…

Chapter 3: Moving mountains

In the ER, a pleasant, sprightly doctor of sensible years did an unpleasantly thorough exam, with the best manners possible under the circumstances. He said I was not actually impacted, it’s just that things weren’t moving.

So, he ordered some blood work, medication for pain and nausea (YESSS!), some exciting radiological studies, and, once I could bear to move, the most astonishing plethora of enemas. In fact, pretty much every type of enema I had ever used on others, over 8 years of nursing and 4 as a nurse’s aide. We went through the entire list. I counted.

I can’t help thinking I’ve paid off some serious karma.

Once my stomach stopped arguing with me and my arm stopped screaming, I could prepare for the CT scan. I swallowed the contrast dye like a trooper, thinking that this was another thing I’d had to bully people into, so I was going to knock it back and say, “That’s not so bad.” My stomach even held it down, thanks to those marvelous drugs. I also had intravenous dye, just to make sure we got pictures of everything.

It was intriguing to be the subject of all these tests I’d administered to others. I wouldn’t recommend it for casual entertainment, mind you. I’d rather rearrange my entertainment system or clean the kitchen or sit the neighbor’s kid — any neighbor, any kid, doesn’t matter, it would still be more fun. But from the standpoint of pure empathy, really seeing the other side of an experience, this was hard to beat.

The IV dye was kind of fun — I was all tingly-warm, and just high enough to enjoy it. I giggled and tried not to wiggle on the table as the tech snapped away. He broke his grumbly facade to ask rather wistfully if the dye was really that fun? He had “never gotten to try it.”

I said I didn’t recommend needing it, but since I had to have it, it beat a sharp stick in the eye. Or the elbow, which is where my IV had eventually gone in. I added that the dye didn’t make up for the previous three days, a remark that made him nod knowingly and then retreat to his rad-shielding and goodly gruffness.

Then, back to the ER and more enemas, since we hadn’t worked our way AAAALL the way down the list yet. Up went a suppository.

I wondered when I’d start developing hemorrohoids. Or a lean-to.

I have never shoved so much stuff up a single butt in my entire life. Ever.

Nothing, nothing, NOTHING happened. It was awful.

With all that garbage going in at both ends, and nothing coming out, I was beginning to feel a little bit ragged.

As I lay there, sweaty and despairing, the dynamic little doctor swung his fist determinedly and said, “Don’t give up. I’m not giving up. We can move mountains — we can move your bowels!”

I hadn’t thought of it that way.

“Next,” the doctor continued, then took a breath to brace himself to deliver the news. “Next,” he started again, “we’re going to try a soap-suds enema.”

Why the pause? Because … well, you have to really understand what he planned to do to me. A soap-suds enema works like this: You pour a couple quarts of warm water into a bag, add a little packet of castile soap, mix it up, and instill it (nice word, eh?) into the colon in a process that means every leg of your colon gets at least half a quart of warm, sudsy water in it.

Have you ever knocked back 2 pitchers of beer in a span of 5 minutes, and then not been able to get to the toilet for half an hour? It feels a bit like that, I suppose, only without the alcohol or winning a bet.

The rationale behind the soap-suds enema is that the soap acts on the intestinal lining to make it want to contract, and the sheer volume of water reminds the muscles of the lower intestine that they have a job to do. It’s an excellent remedy, normally very mild, and is generally well-tolerated. However, it is definitely NOT something you’d think of when your patient is packed out to the point where it’s standing-room only in there!

I looked at him dumbly, jaw fallen open to rest gently on my chest. Finally, I got my voice box back in gear: “You’re kidding,” I husked.

He shook his head. “I think volume is the trick.”

I didn’t know what to say to that.

If he thought that 5 days’ food and water (and tea and Colace and fiber and drain cleaner — just kidding — and I don’t know what) and then the past 4 hours’ concerted efforts in a well-stocked hospital, didn’t add up to enough volume for any 3 colons, there was simply no reasoning with him.

I stared.

He stood his ground.

Finally, I fell back into the sweaty sheets and said weakly, “Okay. Bring it on.”

The nurse did all the things I remembered doing so often, instructing me in the process I once knew so well but had conveniently completely forgotten the moment I realized I was getting it. When the stuff started rolling in, I did like every patient I’ve ever had who had this procedure, and wailed and bitched and moaned that I couldn’t possibly hold it, she was going to have to stop, wait wait wait it’s coming out!

And she, like the ER nurse that I used to be, was reasonably kind but absolutely relentless, and told me first that there was hardly anything in there (liar!), then that I was doing fine, then that we were nearly done, and finally not to fuss because I could hold it a lot better than I thought I could.

Bitch!

She was done, and all that remained was for me to hang onto that ghastly load for 5-10 minutes by the clock, and hope I could make it to the portable potty that stood by the bed when the moment of truth arrived.

I lay there, breathing carefully in order not to disturb things, trying not to think about exploding.

Five minutes slowly passed.

Five and a half.

Five and three quarters.

And then … it worked.

Boy, did it ever work!

It worked really amazingly well. And I’m happy to say that I made it to the bedside commode, where I hung on for dear life.

I can’t say that I didn’t know intestines could hold all that, because I know they can — I’ve seen quite a lot of intestinal contents in my professional life, and I’d seen more at once than this. Not a lot more, but still, more.

I’ve smelled a lot, too, and it was on that scale that this stuff was impressive. The stink would have knocked over a horse with hay-fever. It cleared every sinus in a 30-meter radius, and may have triggered a couple of asthma attacks. I could hear Mom exclaiming from the hallway, on a rising scale that cracked glass on the final word, “Isy, is that YOU??”

Even as a nurse, you don’t often get to take a whiff of bowel matter that has had the best part of a week to fester and mature before reaching the open air. It’s just not a common occurence.

It really reminded me that the colon is simply alive with bacteria whose sole job is to rot your body’s effluent.

What rot!

What effluent!

It was stunning.

One of my nurses came in as I was recovering from my frankly astonishing performance. I felt fantastic, although I could barely hold myself up and was dangling from the arm-rails.

I said, beaming, “Aaaah, the sweet smell of success!”

Here’s how you could tell she had been an ER nurse for too long, but not quite long enough: she sniffed. Then she gagged, riposting, “Well, I wouldn’t go that far!”

Chapter 4: “Oh, by the way …”

Turns out that, among the other blood tests, the doctor ordered a pregnancy test. Naturally, I tried to suppress a giggle. Mom asked, in amazement, “Why didn’t he just ask you?”

I replied, “Well, he has good manners. It’s not something you want to ask a young lady when you’ve just had your hand up her butt.”

The timing was perfect. She choked on her water. Huck patted her back, once he could hold himself upright.

I got admitted to the hospital, which meant they had to make sure they had dotted all their i’s and crossed all their t’s. Somebody at the nurse’s desk smacked their forehead and realized that they hadn’t checked ALL possible sources of internal distress…

The nurse and doctor trooped in with rather grim expressions, and said we had to do a pelvic exam.

ER docs hate doing pelvic exams. They really think it offends their sensibilities as much as the patients’ own. (Most of these doctors are men, so we really don’t need to comment further.)

They didn’t spend ten years in school in order to stick their hands up strangers’ skirts. It’s gross. Give ’em a messy trauma any day. Blood, guts, bits of bone sticking out, messy burns, plastic tubing everywhere, monitors beeping in every key — they love that.

Pubic hair? EEEEEW!

Consequently, they tend to be pretty clumsy with the GYN stuff. It hurt like hell. And they expected me to be sympathetic.

Chapter 5: Life on the inside

There was a delay in getting me admitted. The only spare bed in the hospital that night was on the cardiac step-down unit (my second-favorite type of nursing work), and they finally put me there for the hell of it. It was like old home week for me, except their beds and machines were much nicer than the ones I ever got to use.

They gave me IV pain medication, but of course they used another narcotic, Dilaudid. (Honestly, my admitting doctor was a turkey.) I could only have it every 4 hours, but unfortunately it only lasted about an hour and a half, and I spent all that time sleeping because the pain kept me awake the rest of the time.

It was another flashback for me to see the expression on the nurse’s face when I called for pain medication with tears streaming helplessly down my face, and she had to say she couldn’t give me any for another 2 hours. I’m sorry to say, though, that I had no sympathy to spare for her. It was all I could do not to plead or snarl. I suspect she cheated as much as she could without fudging the law, in order to get me my next dose sooner. I wasn’t coherent enough to say so, but I know I’ve done the same, and all the thanks I needed was to see those eyes close peacefully that much sooner. Mind you, I think I’d have called the doctor the second time.

Of course, they gave me Colace twice a day. They also gave me Phenergan intravenously, so I got plenty of sleep. But, every time I opened my eyes, I saw Mom sitting and reading in the chair nearby, or I saw her coat draped over the back of it and knew she’d return soon. She’s no mush, which is just fine, but knowing she was there made my dazed and painful world immeasurably better.

I spent 3 1/2 days in the hospital, getting rehydrated (16, count ’em, 16 hours before I even whizzed!) and trying to figure out what was going on. Most of it is a blur.

To start with, I had x-rays of my abdomen on Sunday, which required having a clean colon. I was utterly aghast when the saccharine young nurse brought me a bottle of magnesium citrate. I said, “You realize, the only time in my life I had that, last week, I threw up all over the place.”

She shrugged. “That’s what they want you to take. Your insides have to be clean.”

This, after 3 days of nothing to eat, and the most spectacular bowel cleansing I’ve ever seen not 2 days before. There wasn’t anything left to clean.

I opened my mouth to argue, but then realized that things could be worse. There’s always the electrolyte-based cathartics, like Colyte and Go-Lytely, which taste like a mixture of sweat and window cleaner and come in, I’m not kidding, gallon jugs.

I pinched my nose and chugged the dose. Two hours later, my intestinal tract was cleaner than it’s been since I first saw the light of day.

The nurse twitched an eyebrow, “That was quick.”

I disliked her enough to say, “I told you so.”

Chapter 6: X-ray vision

I was still bloated, but my insides felt as light as air. Sitting in the radiology hallway, with a serious case of bed head and draped in ghostly hospital wear, I felt like a giant marshmallow with a bad hairdresser.

I was fifth in line, but the radiologist, a hunky Italian with a sense of humor, stepped into the hallway to amuse me periodically. At one point, he asked if I was “Mrs. Aweigh.”

I blinked and said, “Something like that.”

One of the things I really like about Black English is the title “Miz,” which is perfectly respectful yet maritally vague. He wasn’t Black and didn’t quite know how to recover from the faux pas, so I said what was on my mind, in order to salvage the conversation.

He wrinkled his eyebrows in a hunky Italian way and replied, “Your arm hurts? I thought you were here for abdominal X-rays.”

I said, “I am. It’s been a helluva week.”

“What happened?” he asked.

I told him, “I had surgery in three places on my arm on Monday. The first pain medication didn’t work and it made me nauseous. The second pain medication stopped me up. I spent ten hours in ER getting cleaned out, and it’s taken two days to get me rehydrated. I also had an abnormal pelvic exam. So we’re trying to figure out what the hell’s going on.”

He blinked, looking stunned. “Well, you sound like just the kind of girl anyone would want to marry.”

“Yeah,” I said, in my bloated gown and bloated face and bloated hair. “I’m a ball of fire.”

Chapter 7: Radical tonsillectomy

On Monday, I got to see two competent doctors: the partner of the idiot who admitted me, and the gastro-intestinal (GI) specialist he referred me to.

The GI guy was clearly one of Nature’s perfect gentlemen. He made a special effort to see me that day, and came in at 4:50 pm looking like someone at the end of a very long day with no rest in sight. I thanked him for the effort, and he waved off my thanks gracefully, saying that tomorrow was going to be a nightmare and he wanted to speed things up for me. It was December 30th.

I told him my adventures of the past week, describing my surgery, my pain, and my adventures with my gut. I added, “My pelvic exam was problematic, too. But it was done by an ER doc — bless his heart, I think he was reaching for my tonsils.”

The doctor’s reaction was one for the record books. His face flickered slightly, like old film footage. He held absolutely still for a very large fraction of a second, refusing to lose his composure. Then, after a short, controlled breath, he snapped right back into the patient interview with a straight face.

I think I saw him patting a few hairs back into place as he walked out, but that was it.

Chapter 8: Potty training

The GI doctor ordered an ultrasound. The nurse came in with a quart of fluids for me to drink, and I, remembering all the times I had had to send patients back because they hadn’t drunk enough, asked for seconds.

Well, I still had a nurse’s bladder, which means I could increase a full dress size before I become all that uncomfortable. They forget that nurses are weird that way, and think that it’s not worth examining you until you’re really uncomfortable.

And then there was a delay.

By the time I got to ultrasound, I was in agony, and the ultrasound technician took one look at my abdomen and expressed serious concern that I might pop. She scolded me, in her best maternal manner, and said that I should trust her to know exactly how big she needed my bladder. She sent me to the bathroom with a cup, telling me exactly how many times to fill it, and exactly to where, to bring my bladder to her preferred volume.

The bathroom. Some idiot had pissed all over the floor. Not just the cute little territorial dribbles most men leave. This guy must’ve been blind, drunk or both. It was appalling.

Incidentally, I’ve got a little rant to insert here. EVERY guy dribbles. I love my men friends, I really do, but I have to mop after every visit. And, just to cap it off, they don’t drip dead center — they ALWAYS put it just where you want to put your feet. Now, I hate vacuuming, so I never wear shoes in the house. I hope I don’t have to spell this out for you.

I mean, really, would it kill them to use a little toilet paper? When the door’s shut, who the hell is going to see? I’ve told them: despite what they’ve heard, there is NOTHING in t.p. that will make It shrink.

And don’t let’s start with the toilet seat thing. The entire lid is always closed except when the toilet’s actively in use, so EVERYONE in my house has to pay attention to the seat — so all of y’all can stop your whinin’!

Boy, I feel better after getting all that off my chest. Back to the bowels of this story.

I was too wonky to really deal with the flood, and too wonky to think much at all. I unfolded paper towels, one by one, maneuvering around my IV tubing, clonking my cast, wielding my other hand scarcely better with its sausage-thick fingers, and piled the towels high, until finally no more leaks got through.

And then I had to wipe off and cover the seat, while not disturbing my carefully-constructed polder underfoot. Pulling the towels, stacking them deep enough to keep my fingers dry, keeping the IV tubing out of the toilet, wobbling cast, one hand of sausage fingers. Then I had to figure out how to wee into a cup while keeping my eye on the measuring marks … and simultaneously keeping the paper cover of the toilet seat in place … while craning over a huuuuugely-bloated belly … trying to keep my IV not only inserted in my arm, but out of the toilet … with my one arm with the hand of sausage fingers.

I still have no idea how it happened, but apparently it did: I emerged with a properly filled cup, dry butt and clean feet.

It was the most athletic activity I had had all week.

It turned out that the ultrasound technician had been waiting for me the whole time, and she was rather afraid I had gotten flushed. It turned out there was a larger toilet down the hall, but she hadn’t wanted to make me walk all that way. Had I thought to complain, it would have saved a lot of time. And trouble. And paper.

I’ll try to remember that next time.

Chapter 9: The sweetest sound I never heard

The tech thoughtfully warmed the jelly before spreading it on my belly, so it was merely cold rather than icy.

I love radiology to start with, but seeing my own inner workings (working innards?) was fascinating, completely fascinating. Once I figured out how the transducer worked, I could tell what she was aiming at, and could interpret the shadows on the screen. It was the most amazing, warm and fuzzy feeling to see my own organs bubbling and sloshing away, going about their work as we peeked in at them. All the anatomy books, all the photographs, all the trauma surgery had not prepared me for how beautiful the organs are when they’re just pottering away.

I’ve seen a beating heart in an open chest before, and I thought that was the most beautiful thing in the world. I’ve felt the warm rush of gratitude to my own busy heart as I feel it going thub-bub, thub-bub (I have a tiny murmur), day after day, never asking for sick leave or overtime. I’ve listened to my lungs — a lot; I’m asthmatic — and am probably more familiar with those sounds than a normal person ought to be, but on the days when the air moves in me as sweetly as the breeze through new leaves, it’s a joy to hear.

But this was the first time I got to see my own parts in action. Each one is extraordinarily appealing, in its own distinctive way.

My liver is a modernist work of art. Jackson Pollock on his best day, working with Miró, after a really good liquid lunch with Stella, might come close. It’s an arrangement of seriously artistic disorder, with a sense of gorgeously strange method to its apparent madness.

My kidneys are so adorable you just want to cuddle them. Honestly, they are darling! If they were people, I’d want to ask them out, because anything that looks so sweet has got to be worth some time. I never thought of kidneys as being cute before. Who knew?

The weird thing in my pelvic exam turned out to be picture-perfect ovulation (and a classic example of how poorly-understood “normal” is in women, thanks to the centuries-old bias in medicine.) The ovarian follicle swells up as it ripens, forming a cyst; this pops to release the egg inside the cyst. A follicular cyst was in full bloom, opening like a chrysanthemum, the egg possibly visible as it started off, tumbling downhill toward the fallopian tube. It was a garden in bloom.

The tech enjoyed having an interested and educated audience. She gave me a complete guided tour, and, as a sidebar note, I noticed how she used acronyms where most nurses use the whole terms. I guess, if you look at that many things 6 times a day for 15 years, acronyms are a lot easier to deal with.

Chapter 10: Free at last!

The GI doctor with the beautiful manners discharged me just in time for a New Year’s I was in no condition to enjoy, with strict instructions to follow up with my gynecologist and a GI doctor at home. Once things were moving, there wasn’t anything visibly wrong with me, but everyone was a little worried. So I have the rather unpleasant prospect of comprehensive GI and GYN workups ahead of me.

I hear the horrified screams: “That wasn’t thorough??”

On the up-side, my arm pain is finally managed, without drugs. I’m using this wonderful thing called a TENS unit. It sends a mild electrical current through the relevant part of your body, interrupting pain signals sent by your skin and subcutaneous tissues. Love it. There are a couple of downsides: the cords are affectionate, and want to hug everything in reach; and if one pad gets slightly pulled off, the same current gets concentrated over a smaller area, and that HURTS. So I can’t use it every time I need it, but it is there for when I can.

I have one on loan right now, but when I get one of my own, I think I’ll name it Panacea. Or possibly Heroine, since it does save me, and it takes the pain away. Nice little double entendre.

While I was still in DC, though, I couldn’t get a TENS unit. I made the doctor’s day when I said emphatically, “I don’t want narcotics. Give me Toradol.” (Toradol is like Motrin on steroids. The one downside is that the healthiest person has no business taking it for more than 10 days, because it will rip a hole in your stomach.)

He blinked and said, “I don’t hear that very often.”

I’m susceptible to stomach ulcers. I still got Toradol for 10 days.

I was so relieved not to be suffering that that alone must have reduced the level of stomach acid, as the drug did no apparent harm.

Next, I had a couple of days of lying around the house and recovering, drinking up the ginger ale mom hadn’t finished when she was sick with her tummy bug. It was absolutely delightful to be warm indoors, have the run of the best private book collection I know of, and have Mom being as sweet and attentive as she could be.

On the downside, I wound up overhearing far too many of her conversations with our nearest and dearest about my recent situation. I had to spend my limited social time trying to explain events tastefully (because of course they all asked me to tell them about it anyway), after knowing for a fact that my mom had been very free in using words like “bowels”, “enemas”, “pelvic exam”, and other ghastly, pitilessly explicit terms to everyone she spoke to. For goodness’ sake, you’d think someone with a vocabulary like hers could come up with something better.

But then I knew I would not be misunderstood, using terms like “insides”, “cleaned me out”, “female exam”, and the like, because those I spoke to had gotten the inside dope — sorry, the poop — that is, the facts of the matter, from her in such unmistakable language beforehand. Besides, it made me look all kinds of classy by comparison.

Chapter 11: Need a hand?

Yes, the nerve did get trapped in two of these scars. However, after weeks of hard work, I’ve made a lot of progress in busting it loose. With any luck, all should be well in a few months.

… That was written in early 2002. Since then … well, you know it didn’t end there.

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Pain Manifesto

This came out of cold chronic CRPS type 1, a debilitating condition of intractable chronic pain, nervous system disruption, and multi-system dysregulation — destroying the body’s ability to manage heat/cold, blood sugar, immune defense, circulation, sensation, bone density, movement, vision, digestion, heart function, and ultimately survival.

“Standard” treatments don’t work well for me; moreover, they involve invasive procedures too brutal to tolerate and medications I’m either outright allergic to, or that impair me so profoundly I can no longer function. At all.

So I took myself off my meds, thought things over, and came to the following conclusions.

MY CHRONIC PAIN MANIFESTO

Yes, it hurts.
It’s going to anyway.

So should I hoard my days
And fast from life?
Comfort myself with poisons,
Blister-packed and FDA approved?

Some think it would be best all ’round.
I’d cure them if I could (heh!)
But I’m too tired for
Yet another pointless struggle.

The sunlight pours through trees like prosecco
And reminds me what it means to live:

Voices warm with love, the
Mouth-smack of good food,
The hug of hills and the
Rough snuggles of the sea.

Hoard my days? I’ll spend each one
Like it’s stuffed with jewels
Pouring through my hands like a miser’s dream.

Feast on this:
The cost of life is much the same.
The difference lies in how you spend it.

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Fair Share Challenge: what taxes do for me

This budget horror-show has given us a lot to think about. The role of taxes in our country is probably the biggest, sorest issue of them all right now.
“Why should we pay taxes? That money is ours – we earned it!”I heard this from a member of the armed services who’s quite intelligent.   
Out of respect and consideration for my impassioned, but perhaps distracted, old friend, I wanted to find a non-partisan, preferably non-political way to discuss the point of taxation. So let’s simply see how that money gets used in real life.
Everything in bold-face type is heavily subsidized or completely funded by government money – local or federal, for better or worse. Do any of these tax-funded things affect you?
I take pain medicine which was funded by government grants to develop. My treatment was developed by government grantees. It keeps me alive and functional, so I can write things like this. Is that a good use of taxpayer dollars (printed at the Mint and monitored at the Federal Reserve)?
Read on and let’s all decide.
My nephews go to school by bus, when their mother can’t take them. She has just received her teaching credentials, so she will soon be working as a teacher. Their father, my brother, is a Marine. He runs a base where he supervises the training of National Reservists of the Army, Marines, and Air Force.  He recently visited a friend in the VA hospital.  All of his children were born in military hospitals.
Since they all run on a tight schedule, they use their car a lot. It uses gasoline; they used to have one that ran on diesel; the next one may be an electric hybrid. To cover short distances, they use local roads. To cover long distances, they use highways. They’re careful of road crews, and drive sensibly over bridges and through tunnels (I hope.) Me, I mostly use the bus and train.
My brother and his wife pull over to make room for fire trucks, police cars and ambulances. (Many ambulance systems have been privatized; however, they still work on the basis of city or county contracts that are funded by taxes.)
They eat on the healthy side of a normal American diet. With three growing boys in the house, they eat plenty of wheat and corn-based products, such as bread for sandwiches, cereal, pasta, and so on. They’re allowed occasional treats, including candy and soda sweetened with corn or cane sugar.  I bet they get their beef from the grocery store, so you know it was raised on soy and corn, and was probably fed antibiotics.  Those boys are pure dynamite anyway.
My dear old friend David used to work at the library. He still volunteers there. His pension keeps him in a simple but comfortable style of life. He likes to attend church, though most of his real friends are out and about on the city sidewalks.  He keeps in touch with a friend who has been in the mental hospital, and their conversations help her stay on track.
When my Dad died suddenly, I attended support groups at the local Hospice.  I used to be a nurse, working in hospitals and home care.  In the ER we took care of prison inmates when they got hurt. 
I ran out of work at one point and wound up on food stamps and welfare.  I will never forget that they kept me alive until I could find work again.  Since then, I haven’t really minded paying my fair share of taxes.  
During the last election cycle, I saw an angry woman on TV waving a sign that read, “Get your government hands off my Medicare!”  I hope she understands things better now. 
This has given me a lot to think about.  
And, fellow bloggers, here’s an invitation/challenge: how much better can you write on this theme?  How much do you really know about government support for the things you use every single day that make your life do-able?  How does this pertain to your work, paycheck, interests, family – whatever really matters?
I’d love it if you’d share links here and let me know.
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"Nothing you do is in vain"

My older brother’s sister-in-law has been doing international relief work for almost as long as I’ve known her. She was so helpful and wise, at the time that I was considering it myself, that I didn’t go into the field, though the thought of being so useful to those in such need was overwhelmingly seductive.

I know I don’t have the mental scale that lets you balance what you can’t accomplish with what you can, and decide whether the tradeoff is acceptable. The conditions are so harsh and the scale of work so grim that it imposes limits on care that are unimaginable to those of us who take soap and clean towels for granted; let’s not even think about bandages or IVs. I’d have come off very badly indeed, and that means I couldn’t have done much good.

In our intercontinental conversation on the subject (she’s British), she pulled off a balancing act I have strived to acheive ever since: clearly convinced of my capacities, without any assumption that she knew what they were. When you think about it, that’s very sensible — everybody’s good at something, often several somethings, and there’s nothing that says they have to wear their talents on their sleeves.

I was desperately intrigued by international aid work, but not sure I should pursue it and not even sure how to start; I wanted to know what to do to improve my chances.

She told me, “It doesn’t really matter what you do.” Shifting up from her lovely gentle, understated, soft British manners, I was riveted to my chair as her voice became more resonant, more intense, and I could hear the words marching from the depths of her soul, as she said something like this: “Do what you do; follow your instincts; do the work that comes to you. If [disaster relief] is the right work, the opportunities will open for you when you put yourself in their way, and whatever you’ve done until then will help you get there. If something else is right for you, then whatever you’ve done will help you get there instead.” And then, with a certainty that still makes my bones ring, “Nothing you do is wasted effort. Nothing you do is in vain.”

That was a third of my lifetime ago. Even now, when I have to pull myself through these non-international, unaided situations that are unimaginably grim in a totally different way, I remember her words and how she said them: “Nothing you do is in vain.”

Knowing that no effort is wasted effort, everything becomes much less difficult. Even in such a tiny life as mine has become, this matters hugely. In fact, it totally changes the game.

She was awarded an MBE in this year’s Queen’s Birthday Honors list. Clearly someone agrees that her own work is far from in vain.

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Reverse culture shock, transcontinental style

Dear Reader … I’m a Yank. It’s true. I may have sparkly blonde hair, find it easy to talk to strangers, and not assume that anyone who smiles at me has an agenda, but that’s because I’ve been living in Central Coast California for 1/3 of my life.

Here in California, when you tell an acquaintance that they’re particularly clever or sweet, they grin pinkly and do a little riff on, “aw shucks, stop it again, quit it some more,” and like you the better for it. In New England, they’re liable to lift their chins — apparently avoiding a slobbery little dog — and take it as their due … while wondering what your agenda is, and bracing to resist it.

I know this because, after living in each place for a few years and watching the expressions and asking why, I found myself doing these exact same things. (I’m not immune, but I try to be aware.)

I’m also planning to go between the mid-Atlantic seaboard and the Northeast, which I’ve done before, and that has a charming set of subtle cultural potholes of its own.

For instance, if you call a stranger “ma’am” or “sir” in Alexandria, they figure you have nice manners and relax a little.

If you do that in New York, they raise their chins (ever so slightly) and figure you’ve taken a lower peg than themselves in the pecking order; then they’re either magnanimous or obstructive, but usually magnanimous.

If you do that in Massachusetts, they look around in a flustered manner and can’t quite figure out if you’re making fun of them or are putting them on a pedestal they aren’t sure they should occupy. … Which is in interesting contrast to the reaction to compliments.

Mind you, those who know me well have it figured out: compliments are taken pleasantly and “ma’am/sir” lightens the mood. So I’m not worried.

But I am glad that California has the cultural weight that it does, because — as I learned long ago — saying in an explanatory tone, “I’m from California,” smooths out any number of cultural faux pas. And there are sooo many pas to faux up.

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A gift that keeps on giving

My 37th birthday happened at a fraught time (no, really?) but I planned ahead: 4 friends and I, tiny Brazilian restaurant, pitcher of mojitos.

No crowds. No fuss. No presents, please.

That was important. I was preparing to move but didn’t know where yet.

So Joyce and Graham, the techies, got me an early iPod Mini. Laura, an artist, got me an extraordinary shawl. Vince, a true gentleman, did exactly as I had asked and felt terrible about it.

My 37th year had been full of character-building surprises. I had decided not to reprise turning 36 because the subsequent year had been so rotten, but I wasn’t happy about getting older. Even before the drinks were poured, I was bitching about my age.

Joyce and Graham, who were just peeking over the shelf of 30, said, “There there, it’s good to be seasoned, age brings wisdom,” and so on.

Laura, a couple months older than I and the most sensible artist I’ve ever met, said, “Yeah. It sucks.”

Vince, who was barely old enough to rent a car in his own name (although he was bright enough to write the certification tests for Borland C++), with a self-deprecating shrug and a charming little pinkness, said, “I don’t know, you always seem to me like you have a mental age of 17.”

I remembered being 17 — happy, busy, fit, secure in my slice of the world, delighted with most things and amused by the rest, my adult mind just blooming, and absolutely no idea how cute I was.

Once I could reef in my grin enough to use my mouth for speaking, I said, “You just gave me the best present of all.”

Sadly, he didn’t exactly believe me.

The iPod Mini was superseded, then stolen. The beautiful shawl disappeared, along with everything else, when the US Mail failed to deliver what I mailed in my move.

But every year, when yet another birthday looms, I remember Vince twitching his shoulders and saying sweetly, “I don’t know…”

And, really, the count of years doesn’t seem quite so bad.

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B. C. E. takes on new meaning

Les was a chef before he was born. He helped with a BAADS Thanksgiving some years ago as a gesture of kindness, and found that — as he remarked to a friend helping out yesterday — “boy, these disabled people sure can cook!”

I laughed out loud, losing several points for coolness — but I regained them later with my Drunken Sweet Potatoes.

A weighty label like “disabled” sweeps everything before it. Literally, everything… before it. Most of us had full lives before we got a crippling illness or injury; we all have full lives now, even when much of that fullness has to do with how much harder simple things are.

But everything we did, or were, _before_ or _besides_ being [whatever] is still with us. Abled-bodied people rarely seem to think of that themselves: the term “disabled” makes our able-ness seem surprising.

Back in the late 1980’s, the socially-preferred term was moving from “disabled” to “handicapped”. This explanation from a kindly woman explained why: “It’s not correct to say I’m dis-abled, because I’m _able_ to do many different things. But I have to deal with added burdens to get the same things done that a normal person does, so I’m _handicapped_.”

Horses carry extra weight in a race, golfers get extra points on their score, and racers get penalties added to their times to handicap them. Though life isn’t a sport I entered with any thought of competition (and that’s where the analogy falls down), it’s true that I do carry a burden which makes it harder to complete the same tasks that anyone does.

But I can still cook one heck of a pan of Drunken Sweet Potatoes. Not everyone is, ahem, able to do that.

I’m definitely handicapped. I’m not sure I’m disabled. I can still write, and often remain coherent through a whole paragraph. That’s an ability!

B. C. E. — in my case, that means Before Crippling Event — I could play the flute pretty well, too. I can’t even hold the darn thing for more than a few seconds, now; the handicap there is too great to overcome.

Sadly, it’s still true that — whatever we call it — this is a nasty, harsh reality which everyone handles poorly sooner or later; the terms will continue to revolve as we try to keep from getting too stuck in our collective thinking.

As the next decade turns, I expect the terminology to change again. And then again a decade after that. And again and again, as people age and grow and try to loosen up their thinking. Rock on, I say! — We could all use a little more change.

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On weighing the evidence

My friend J’s husband called her from work today with the immortal words, “I’ve met someone else.” If he had been able to pick a worse time in life to tell her — say, when she was hooked up to chemotherapy or had just been knocked over and broken her spine — I suspect he would have. (I’d like to think I’m joking.)

I recently had another opportunity of my own to mull over the impact of emotional deceit and betrayal, but after the initial surprise I found those reflections boring.

Instead, I turned to thinking about getting so attached to my hopes and errors that it becomes almost impossible to look at the evidence and admit I was wrong. I _was_ misled, but also, for a year, I remained more attached to my erroneous assumptions than to the weight of the evidence.

So I’m reminded of the importance of being ready to notice, and own up, when I’m likely to be wrong. What someone tells you isn’t evidence, but what they do — or fail to do — certainly is. Sooner or later, you have to go with the evidence.

J and her husband had years of shared struggles, victories, and all the usual pushme-pullyou dramas and traumas that go with two different people sharing their lives.

There were times when, on the basis of the evidence, I told her she should leave. Maybe she should have, for the sake of her own soul. But she didn’t, and her husband would almost always call when we were talking, because whether they were getting along or not, he’d still call her every hour throughout the day and then ring off with a real, “I love you.”

So what do you do when the evidence itself is so confused?

Very few people wind up in solid marriages. Both my brothers did, so I sometimes think that I should, too. But I’m beginning to believe, down to my soul, that nobody will have my back that devotedly — and maybe they shouldn’t. Maybe I shouldn’t come first to anyone, nor put anyone first, myself. Becoming that attached to something that’s so very rare in reality does seem to hinder one’s ability to see the evidence, and destroys the ability to admit that one is wrong.

I have congenital trouble with admitting that my perceptions are wrong in the first place. Perhaps I should just work on that.

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