Describing Dilaudid

The nausea was relentless. Truly I wanted to die because death would be an end of it. Two weeks of heaving and my gut muscles screamed like they were shredding. Okay maybe that’s a bit of an exaggeration. But in my mind they registered as raw, and I was the only one who could hear them screaming. It was me moaning that other people could hear.

Let’s face it, you know you’re sick when you call out, “Please help me” to everybody who gets near enough. Richard was mortified. Not me. I had no pride, false or otherwise.

This is the extremity. Next comes flailing your arms and throwing yourself against the wall. I know. I had several times stumbled around semi-lucid in a repeating little drama that began with me savoring a chip of crushed ice or a sip of sports drink, loudly proclaiming my delight, and more and more likely to guzzle and gulp in my dehydrated condition, knowing what must follow and not able to control myself. To hell with the inevitable hurling – I WAS SO THIRSTY after two weeks of this crap.

I remembered a bit of history gleaned from Sherry’s novels about the Arab world at that time. Suddenly I can relate to dying of dysentery on the beach where they landed with those crazy Christian Crusaders.

And today, this very day right now people, mostly children, are dying that way in that same part of the world, dying for lack of clean water.

Rich wouldn’t let me get too out of hand in the Emergency Room waiting area, and just as soon as I started heaving, the staff in charge loudly commanded the others to “Find someplace to put her!”

I spent the next two hours tucked away in a back corner, a closet with a short examining table, where they did an EKG and left me squirming and writhing with nothing but a heart monitor giving any indication anybody knew I was back there.

Even when you hold a bowl under your chin continuously, there will be mishaps. My biggest problem, though, wasn’t the vomiting. My attention was fixed and foremost on my breathing. I knew from painful experience what would occur if I let myself go even for a minute.

I had started hyper-ventilating hours before, at home. My hands were buzzing with that half numb sensation that quickly escalates to muscle spasms … and if you’ve never experienced these, you are among the blessed.

Deep slow breaths. Almost as hard to do as it was to suck on one ice chip and not swallow any of it. So there I was guzzling, retching and hyper-ventilating. It was a minimum two-hour wait to be seen by a doctor.

Honestly, with what little clarity I had left, I began to doubt I would make it. I thought I might really make this much harder for myself, if such can be imagined, were I to act out or even get into a confrontation with hospital staff … of which I am quite capable. You might even say it’s my nature.

I had continually to resist the urge to run around with arms flailing, demanding someone help me. When it almost overtook my self-control, Richard held me tight until I could once more turn my attention and efforts to my breathing.

When at last it was my turn to be seen, the doctor came in flanked by two nurses who knew what she was going to say before she said it. One of the nurses had three syringes, loaded and ready to go. She held them in her right hand, each between two fingers, all points up, ready for the command. When the doctor said, “Let’s get some …” that nurse was already pumping me full of Zofran, Ativan and Dilaudid.

Dilaudid, just two milligrams. A flower bud opened itself in my middle, radiating great overlapping loops of warmth and well-being that slowly spread to my nearly-numb finger tips and finally my breathing settled in and I wrapped myself into it and let go.

They admitted me and I lay thankfully in their angelic care for five more days. We figured out a sinus infection had spread to my digestive system and got it squared away.

And what do I wish I could do again? Don’t you know it!


Anybody Know?

When you’re concerned about Pain Management, I assume you have suffered some kind of damage that requires attention. What my doctors have typically done as PM for me was to give me narcotics and send me to physical therapy.

Physical Therapy is a good and pleasant thing but it doesn’t take away the reality of my calcifying spine, so it offers me only temporary relief. Narcotics did really help. However my tolerance was getting way too high. I just went through an unpleasant detox to get off of them. But that was it: drugs and physical therapy.

Only when those measures became ineffective did they look closely into the problem. in 2013 looking closely means they get the MRI. And then they act surprised to find a longterm problem that could have been fixed long ago. How much pain do I have to endure before you people will take a look and see what’s going on?

Doctors to druggists this is the insurance companies, denying us good treatment by limiting our doctors options.

Or, I have shitty doctors. This is highly possible. They have all missed the boat one way or another:

– Moise dismissed my scar tissue pain, which Dr. Soto fixed handily with trigger point injections. – Sealy put me on the pain patch.

Bunch of bozos.

Okay so maybe I have the worst medical team on the planet. Hell I don’t know. What would happen in, say France? I wonder. Anybody know?

In search of a great neurosurgeon

I need a excellent neurosurgeon to do the endoscopy on my spinal stenosis. I have a strong constitution in a weak set of bones. I know now I was born with the spina bifida. My discs were shot before I was 35, so my low back was fused. This left me with a low back so absolutely plumb that the rest of my back had to twist to fit, and my neck has never stopped getting painfully out of alignment since. It was the headache that sent me to the doctor in 1993. They guessed, wrongly that I had a brain tumor and I ended up at the neurologist who promptly ordered an MRI.

The Radiologist called to check because the order said possible tumor but the pictures said MS. Shit I thought, two neurological disorders in one lifetime? That seems like a lot. Hey guys, I had polio when I was five. Could that have something to do with it? Nobody knew.

I’ll never forget the spinal tap that boob did on me. Go right back to full activity he said, and I did. And soon I had a leak. And that headache is right up there with the worst migraine or neck related headaches I have ever had.

My brother Vince couldn’t believe he didn’t tell me to rest for a few days. I was going in for a blood patch a week or so later when it finally closed on its own.

That experience soured me on neurologists.

That Radiologist had never seen Polio or he wouldn’t have mistaken it for MS. Polio damage is limited to the brain stem. Dr. Moise knew that. She told me it meant I had both Polio Encephalitis and Paralytic Polio.

The good news is I didn’t have Bulbar Polio, which was the strain that attacked the lungs, causing the majority of fatalities. The reality is you need a minimum of 35-40% of your lung capacity to survive. You gotta keep breathing.

Walking not so much. I was paralyzed and I had encephalitis too, but my lungs are unscarred. You see there is always something to be grateful for.

Besides throwing the rest of my back out of alignment, the surgery left a knot of scar tissue that felt like being stabbed with a knitting needle. One physical therapist used deep massage on the knot. When it let go out came memories from having polio. Tears flowed. I reconnected with my sister and my mother on a deeper level. And I learned things that helped me heal by releasing wrong ideas I had as a little girl, and the emotional pain inside of being hospitalized for months.

And let’s not forget the cruelty of the nuns. The hospital staff were terrified of catching it. We were quarantined in the hospital. Staff were masked in my room. They had no intention of opening their mouths to speak and they were in a hurry. So any delay while I asked begged sobbed or screamed kicked and demanded my Mommy was met with swift justice. They’d pick me up and toss me on my stomach. Then came the impatient overly rough administration of suppositories. I tell you for me it was a rape-like experience.

But when I got out of isolation after three weeks alone and one of semi-isolation, I thought I would finally get to see my Mommy. I was devastated. I cried for hours until the nun told me if I continued to act like a baby, they would treat me like a baby and put me in a crib.

Under threat of humiliation I choked back my tears. Mightily I resisted the sobs and the tears. Again and again those waves of sorrow drowned me, and then they brought out an old enamel crib. Ancient even in 1954. Thin iron bars painted white. Up went the sides.

And as if that wasn’t humiliation enough for a five year old, they wheeled it out into the center of the ward and set it there as if on display. Indeed I have no doubt the other children were warned to behave or face a similar fate.

When at last my mother appeared she got right on it. “She’s a big girl! Why is she in a crib?” She demanded to know. The nuns promptly lied. They told my Mom it was to keep me at rest.

After a while they released me to a single bed. By then I was in a wheelchair. I learned to read in that crib.

The wheelchair was such freedom after the crib! Every evening after lights out, when the nuns were gone, I made my rounds. I adjusted pillows, I washed hair, I combed hair. I carried water. I loved every minute!

So after being born with defects in skeleton, Polio, fusion, scar tissue … On to the next thing: spinal stenosis.

So now I need a great neurosurgeon.


It’s no mistake that my email address is “stillwalkn.” When I was five years old doctors told my Mom I’d never walk again. Apart from several months on the polio ward at St. Charles Hospital in Brooklyn Heights, New York I have been walking continuously for 63 years and I’m still walking! Don’t get me wrong. It hasn’t been easy. But whenever it starts looking like I’m going to be in a chair again, I just get more determined than ever not to allow that to happen. I have an aversion to being in a wheelchair again. Go figure.

When I was 20, doctors at Mt. Sinai Hospital in New York advised me to accept my limitations, which included not being able to carry a suitcase or walk more than one city block, and the pain, always the pain. I became angry. I didn’t want to accept all of that. I felt the irrepressible need to rebel, and to prove the doctors wrong.

So I talked my boyfriend into a two-week hiking trip. Then I told my doctor. She “washed her hands of me.” Then I told my Chiropractor and he “washed his hands of me,” too. But he said if I was determined to do this insanity I should at least wear a support belt around my hips. I still have it. It’s two inches wide, quite thick, and closes with a clasp consisting of two incredibly sharp metal prongs. I wore it on the hiking trip, and it helped.

The initial ascent up Mt Washington in Vermont’s White Mts. With a 40 lb. pack was hard. i don’t think i could have done it without that elastic belt. But it got easier and the pack got lighter, and when we bounced and bounded out of the woods two weeks later I was in better shape than I’d ever been. Now when a doctor tells me to sit I stand, to rest I walk, to accept I fight. Which is not to say I don’t sit, rest or accept. I do them all and I do them often. But I’ve never ever given up.

But every time I overcome an obstacle another obstacle comes along. It’s the story of my life. The invitations to sit down and give up have paved my way. As I decline the invite again and again, my resiliency gets stronger. I heal faster and better than anyone I’ve ever met.

Doctors routinely misjudge how long it’s been since my last surgery. Recently, a PA at my Surgeon’s office insisted I was there for my 12-week check-up. It had been exactly eight weeks, not 12, but he wanted to argue with me. I finally convinced him to look at my file. “Oh,” he said, “you ARE doing well.” That’s how I roll. Life is short: heal quickly.

I thought there was nothing left to learn about my beleaguered low back. I had my first slipped disc at 13 and a fusion when the scoliosis was so severe three discs ruptured, one, two, three in a row like perverse dominoes. The Monroe Doctrine right here in my back. The fusion made a big improvement over feeling nothing below my waist, but pain right there has been continuous, varying only in degree from mild to incapacitating, more or less on a daily basis since the surgery in 1986.

My Surgeon at the time, Dr. John Bishop at St. Al’s in Boise told me at the time I had “unformed bones” from a birth defect, and he showed me the X-rays, but I didn’t know how those bones were supposed to look so telling me “See? They’re not solid” didn’t mean much and I filed it away in the vague and uncertain section in my memory. I thought no more about it.

None of my subsequent doctors, all of whom have scrutinized my various back pictures, has ever mentioned my birth defect, so I forgot all about it. Until last week when I met Dr. Patrick Soto. My polio doc sent me to him to see about getting some pain-relieving injections back there. We had covered my medical history thoroughly but he kept asking when did I have the laminectomy. I said I’d never had one. But then where are my bones? Oh, wait a minute…missing bones? The birth defect Dr. Bishop told me about?

None other. But now it has a name: “Spina Bifida,” and while a minor case of it is not at all rare, it could certainly have something to do with my unrelenting and quite debilitating back pain. You think?

I’m wondering how you fix something that isn’t there. But such questions must wait their proper time. Meanwhile just don’t ask me to sit down. I don’t know how.

Lateral Release or “Take Your Analgesics, Dummy!”

Had surgery on my right knee this morning. There was no possibility of confusion. Certainty was assured by my surgeon’s preliminary act of omnipotence when he signed my right knee in purple magic marker. I was later given the marker in a plastic ziploc bag, a single-use item in what is becoming a mostly single-use medical system, in an attempt to stem the spread of MRSA, the drug-resistant form of Staph that is terrorizing American hospitals all over the country.

Everybody has a MRSA story and so do I. It’s really my sister’s story, but me and my Reiki mob got into the act so I get to claim it as my own. My sister had breast cancer three times. The third time, the docs woke up, at long last, and decided to remove the offending tissue, her breasts.

The mastectomy was unremarkable and apparently successful, but for reasons beyond my feeble mental powers my sister elected to have a full reconstruction. That’s when things got off on a weird medical side trip. At that time, in the early 2000’s, “full reconstruction” entailed relocating a quantity of muscle tissue from the abdominal area, and using it to build credible breasts on the chest.

This is fine as far as the breasts go, but the impact on the abdomen is another story altogether. Very slimming but leaves the abdomen without sufficient tone to hold the internal organs properly. To replace the pirated muscle tissue, doctors came up with a mesh product that was supposed to provide stability and essentially function like lath in an old-fashioned plaster wall. But it hasn’t panned out as expected.

The mesh has been such a monumental failure in fact, there are law firms dedicated solely to prosecuting damages against the mesh manufacturers and any doctors or hospitals foolish enough to have installed it. In many instances its results have been fatal. Fortunately my sister knows a Reiki Master.

For a few years after her reconstruction, it seemed Barbara was in the hospital no less than quarterly to have fluids drained from her abdomen. This went on and on until finally the doctor said enough was enough. So after draining the accumulated fluids, he admitted her instead of sending her home and did exploratory surgery the following morning to see what in hell was going on. What he found was truly disgusting. The mesh was loaded with infection. So he excised it and to hell with abdominal muscle tone.

So far so good, but the next day a post-procedure X-ray revealed they had overlooked a hunk of the rotten stuff, so they went in again, Now this was the third surgical procedure in as many days and apparently you can’t tempt Fate three times and get away with it. They finally had all the offending mesh out, but now Barbara had a full-blown case of MRSA and off to the Intensive Care Unit she went.

Needless to say, by then she was physically, mentally and emotionally exhausted, not how you want to be feeling when you find yourself at Death’s door. Which is where me and my Reiki mob got into the act.

When the odds are stacked against you, and you’re headed down for the last time, Reiki comes into play. Call it Divine Intervention, Inspired Prayer, Laying On Of Hands, hell call it A Miracle (many do) or call it Magic. We don’t care what you call it. If you really push us into a corner, we’ll probably just call it Love.

I called her. Her voice was thin and gave the impression of someone in the process of disappearing. Tired, worn out, fading…I was scared. So was she. I told her we would send her energy, but she would have to let it in. How she wanted to know?

“Just decide to let it in.” She was uncertain whether I had lost my marbles or was speaking in tongues, both of which seemed more likely to her than a literal translation of this simple statement. She wanted to know how exactly one “lets it in.” I explained all she had to do was decide or intend to let it in. Too easy for most Western minds. But under the circumstances, she said she’d give it a try.

The next morning she was scheduled to have a blood test. “We need to see a drop from 12 to 8,” the doctor explained. “We’ll know in a few hours.” I called when I guessed the results would be in.

“Well, do you feel any different today?” I asked. At first she didn’t know what I was talking about. Was I becoming more inscrutable, or was the infection eating her brain? Then it hit her, “Oh!” she yelled the way people shout “Eureka!” when they suddenly comprehend a problem in mathematical logic. “Oh!, that’s what happened!”

That morning she’d woke up early and full of pep, leaped out of bed and started cleaning her bathroom…yes the one in ICU. Perfectly normal behavior for Barbara, so she thought nothing of it. But the ICU nurse didn’t see it that way.

When she came in and discovered Barbara standing on the commode washing the shower stall walls, she became instantly apoplectic. “What are you doing out of bed?!” she demanded to know. It wasn’t a question. “Cleaning the bathroom” Barbara replied in perfect Capricorn deadpan. “Well get back in bed this minute!” the nurse ordered. “You’re a very sick woman and you’re not supposed to be out of bed!” I love it when people state the obvious with such emphasis. It’s like announcing “The sky is blue!” as if you’re noticing it for the first time. “Back in bed. Now!” the nurse demanded.

In addition her count was down from 12 to 7. Not bad for just deciding to let it in. She was discharged the next day due to unexplained rapid remission.

That’s my MRSA story. For the record, Barbara was in a hospital on Long Island. New York. I live in Washington State, and the Reiki Masters were from such far-flung places as Ankara, Turkey; London, England; Sydney, Australia; Bangkok, Thailand; India; Germany, and the list goes on. I believe about a baker’s dozen of us participated. Don’t be alarmed, though, we only work for the highest good of all concerned. A great thing about Reiki is that it can’t hurt you. If it hurts you, it wasn’t Reiki.

So this morning, Richard and I got up at 5:30 a.m. Pacific Daylight Time so the Doc and I could meet at Valley Hospital. It’s always a pleasure to see him, but today was very special. Today, he cleaned up my knee cap joint and did a lateral release of the Patella, which shifted the movement over to the remaining bit of cartilage and away from the area without. I hope I hope this relieves my knee pain and alleviates the need for a knee replacement, which should be avoided at all costs. We shall see.

Before the surgery, while I was conscious and after the surgery, while I was conscious I was very clearly aware of my fellow Reiki Masters around the country and around the world generously flooding my physical, emotional and spiritual space with beautiful clear Chi, Qi, Universal Life Force, Christ Light or whatever you like to call Love, which is Light, which is Source and which is capable of healing anything you or I can come up with to be afflicted by.

Earlier this week, I made an appointment for accupuncture on Sunday, two days from now. When he heard I was having surgery today, the reception person asked if I really thought I would be able to get there so soon after surgery. “Oh no problem” I said. “I have no doubt.” My Reiki friends will see to that.

In 2005, I had my left Achilles tendon lengthened, a post-polio fix. Tendons are slow healers, so they put my lower leg in a plaster cast designed to last six weeks. My friends sent Reiki. I was painfree, so of course I was up and about in the house, unaware that my level of activity was shall we say excessive under the circumstances? The next day I was back in the doctor’s office getting a new cast because I had broken the thing in three places and it was falling off.

Last Spring, I had a tendon reconnection in my right shoulder. When I went in for my 8 week checkup, the doc looked me over and began his standard discussion for 12 week rechecks. “So,” he began, “you’re at 12 weeks now and you’ll be wanting to begin to increase your level of activity…” I interrupted. “Eight weeks. I’m at 8 weeks” I said. “No” he corrected, “you’re at 12 weeks.” “No Doc” I countered. “Look at my file. I’m at 8 weeks.” “What??” He looked at my file. “Wow, you are doing really well.”

I could go on. Another time.

So, back to today. The anesthetic lasted exactly six hours, wore off practically all at once at precisely 3:00, and I am painfully aware of the physical insult as I write this. It didn’t take me long to decide to take my analgesics! Whew! This is some pretty sharp pain, even though I am certain it is much less than it would be without Reiki.

I prepared for a long tenure on the living room couch, creating for myself a comfy nest with many books and possibles, computer, iPad, chargers, Bose remote for iPod, etc. intending to enjoy my time with the ice pack on my elevated knee joint as much as womanly possible.

The whole day has been fun. The nurses and doctors were all in good moods … I know because I checked with each and every one of them. My surgeon stopped by to sign my knee and asked how I was doing today. “Fine” I replied, “but more to the point how are you doing today?” Well it was one jovial exchange after another, and then I went to sleep and missed all the nasty, bloody business of a lateral Patella release.

It’s all so neat and tidy for the patient. I awoke to find my leg wrapped in a clean ace bandage, had some coffee and toast, got dressed and rode the wheelchair express to the front door where Richard picked me up and took me home. Then he went and picked up my three prescriptions, two for pain, the “pain twins” and one for inflammation, the “poison pill.”

By the time he got home with the medications, the anesthetic had worn off and I was disabused of any notion that I could get through this without narcotics. As soon as he got here, I took the meds as directed on the labels. Then I settled down to read the patient information. This is where they scare you out of taking the stuff. Fact is, I’ve had the “pain twins” before so no surprises there, but the third medication was a new one. The doc had called it “super Motrin.”

The label information reads like a list of all the worst ways to die from modern medication. Bleeding ulcers, heart attack, aneurysm, bloody stools, vomit that looks like coffee grounds, blood in your urine, confusion, dizziness, disorientation, hallucinations (well that doesn’t sound too bad), red/swollen/blistered/peeling skin, seizures, severe headache, vision or speech changes, difficulty breathing, swelling of the face … essentially it’s fatal in three major body systems and annoying in all the others. But if it doesn’t kill you outright or damage you permanently, and if you take it no longer than five days and don’t mix it with anything else, maybe it will reduce your inflammatory reaction to having the membrane that controls accumulation of fluids in your joints frankly severed … aka lateral Patella release.

Oy vey. Pass the pain pills would ya?