Me & My Cannibal
(chronological order, from a blog by Alan C. Baird)URL of this page:
August 26, 2006: Bibendum (a/k/a "The Michelin Man"). For the past several months, I've been plagued by delayed pressure urticaria, a form of hives. At first, it was just a minor nuisance, a few swollen bumps which appeared at night, and disappeared by morning. But then the bumps became very itchy, and began spreading, until they covered a large percentage of my body. These bumps started developing bumps, and I began to look a bit like Bibendum. So I finally visited a dermatologist on Wednesday, but for some strange reason, medical science can't determine the exact cause of this ailment. So I now have a bunch of drugs that make me spacey and sometimes suppress some of the bumps. Swell.
September 8, 2006: Anaphylactic shock. A serious attack of urticaria finally forced me into the emergency room, early this week. The doctors all seemed unable to explain why this is happening, but they hid their ignorance behind a couple of fancy medical terms: angioedema (swelling of the face, throat and chest) and anaphylaxis, a severe and rapid multi-system allergic reaction. Anaphylaxis occurs when a person's hypersensitized immune system is exposed to a trigger which acts to release histamines (immunologic neurotransmitters) and other potentially irritating substances from mast cells inside the body.
No, I don't really understand it, either. But they told me the extreme form of anaphylaxis--anaphylactic shock--will usually lead to death in minutes, if left untreated. And this is exactly what they expect to happen with me, when the hives appear next. The doctors are very casual about the whole thing: "Yeah, these attacks just keep getting worse, as time goes on." Fucking Pollyannas.
So now I have to carry a lifesaving epinephrine (adrenaline) syringe, which you may remember from the scene in "Pulp Fiction" following the overdose of Mia (Uma Thurman):
Lance (Eric Stoltz): You're going to give her an injection of adrenaline directly to her heart. But she's got, uh, breastplates... [taps Mia's chest] You've got to pierce through that. So what you have to do is, you have to bring the needle down in a stabbing motion. [demonstrates repeatedly]
Vincent (John Travolta): I-I gotta stab her three times?
Lance: No, you don't gotta fucking stab her three times! You gotta stab her once, but it's gotta be hard enough to break through her breastplate into her heart, and then once you do that, you press down on the plunger.
Vincent: What happens after that?
Lance: I'm kinda curious about that myself.
In my case, any stabbing should be directed at the outer thigh muscles... just in case you see me lying on the ground with angioedema (right, below). [Ain't I cute?!]
But we still didn't know the cause or cure, so Anikó and I took a 200-mile roadtrip yesterday, to see a hotshot immunology and allergy specialist at UCLA's Medical Center. According to SuperDoc, it seems that my problem is not triggered externally (for example, by allergies to milk, shellfish or cat-hair furballs), but my immune system just got nudged out of whack. Very mysterious. SuperDoc says the trick is to interrupt the tightening downward spiral of trigger=> histamines=> hives=> HISTAMINES=> ANGIOEDEMA=> ANAPHYLAXIS=> DEATH by suppressing my immune system with a steroid, while simultaneously stopping my body's crazed overmanufacturing of histamines, with H1 and H2 blockers. Then we gradually withdraw the steroid, see what happens, and finally begin to reduce the dosages of the H1/H2 pills.
I can't fucking wait to see what happens. Meanwhile, Anikó wants to practice stabbing my thigh. She's *such* a dutiful wife...
September 10, 2006: Immunology 102. At one point during this five-month-itching-scratching-inflamed-swelling ordeal, I began to identify with the Julianne Moore character in "Safe" (1995)... here is Terrence Rafferty's review of the film, as published by The New Yorker:
Carol (Julianne Moore), the heroine of Todd Haynes's peculiar, daring new movie, is a wealthy Southern California housewife stricken with a mysterious disease. The best diagnosis anyone can come up with is "environmental illness"--which means, essentially, that she's allergic to the world she lives in. No matter how sterile her surroundings may seem (and they look as scrubbed and shiny as an operating room) they are, for her, teeming with toxins. The movie is an eerily detached study of biological paranoia. At first, Haynes's manner seems fanatically austere: the heroine's deterioration is rendered in clinical, elegantly alienated long shots. But the movie's rhythm is hypnotic, and when, midway, the action shifts to a New Age desert compound that represents Carol's last hope of restoring her health, the filmmaker's distancing techniques begin to pay off in volatile, eccentric satire. Moore, in a nearly unplayable role, is amazingly vivid and touching; this is a heartbreaking portrait of a woman in full, panicked retreat from life. Also with Xander Berkeley and Peter Friedman.
Finally, check out this haiku-like dialogue sample from about halfway through the transcript... it's funny how an "airtight, porcelain-lined enclosure" can sound so tempting, when you have no idea what's attacking your body:
The first thing you need to do
in order to clear...
is create an oasis
in which to live.
is your safe place.
Your toxic-free zone...
where your load
has been significantly reduced.
For some that can mean an airtight,
something like a refrigerator.
For others, their safe room...
is just a stripped-down room
within their house...
to good ventilation...
or air control.
October 19, 2006: The Great Windkeeper. This is an herbal dietary supplement, also known as "Eliminate Wind Powder" and "Powder For Dispersing Wind-Evil," that comes in the form of tiny, perfectly-round, blue teapills.
Colorful. In more ways than one.
These cute little pills, along with Ginseng Eight Combination (an herbal tea extract that tastes like mud), were prescribed for my urticaria by TCM (Traditional Chinese Medicine) practitioner Isabelle Saint-Guily, who is actually French, not Chinese. She's also an Aikido Black Belt and a Reiki Master.
Yup, I've lost faith in the AMA allergists. They have no clue about what causes the hives, and they seem completely incapable of effecting a cure. They keep throwing new pills at me, none of which really work.
Isabelle diagnosed me over the phone, requesting only photos of my tongue, which I eMailed to her. Pretty unorthodox. I've known Isabelle for years, and trust her judgment in these matters, but I've never needed to ask for her medical help. Let's hope she knows what she's doing.
November 2, 2006: That's MISTER Pincushion to you. Went to see an Acupuncturist/Chiropractor yesterday. Ten needles. Weird.
January 11, 2007: Urticaria Redux. My hives never really went away, but they were under control. For a while.
Our shitty health insurance company (Aetna)--foisted upon us by my cheap former employer through a COBRA event--kept threatening to pull our coverage just because we moved out of California. As a result, I was running dangerously low on the prescription drugs that were staving off anaphylactic shock and keeping me alive.
Even after a dozen visits to an acupuncture clinic, my body was still dependent on prednisone, a prescription steroid. If I stopped taking the prednisone, the hives would push me into anaphylactic shock, and I'd quickly die. But if I continued taking the prednisone for much longer, my immune system would be totally useless against any infections, and a simple cold might kill me.
Then the shitty health insurance company (Aetna) finally agreed to continue covering us in Arizona (for a whopping increase in premium fees), so I went to another allergist. He said, "Modern medicine doesn't know much about these no-external-trigger allergies. They sometimes cure themselves in three to five years. If you're lucky."
Please Doc, don't sugarcoat it. Tell it to me straight.
He prescribed a hellbroth of strong antihistamines, in an attempt to wean me off the prednisone. But these expensive new antihistamines were not really covered by the shitty health insurance company (Aetna). So when I tried to get the prescriptions filled at our local pharmacy, they said they couldn't give me the pills right away, because they needed to fax the allergist for approval. After a couple of days, they told me they were still faxing and still waiting. No word from the allergist's office.
After a few more days, I finally called the allergist's office to see what the fuck was going on. They blamed the shitty health insurance company (Aetna). I had suspected as much, so that sounded about right. But when I contacted the shitty health insurance company (Aetna), I found out the allergist's office had dropped the ball, by not contacting the shitty health insurance company (Aetna) for "precertification."
At that point, the hives started coming back. With a vengeance. In desperation, I returned to the acupuncture clinic last night. They stuck me full of needles and fixed me up with some more of The Great Windkeeper. Today, no hives.
So fuck the AMA. They couldn't find their asses with a topographic map. And fuck the shitty health insurance company (Aetna), which adamantly refuses to cover acupuncture. But especially fuck the US government, for not being able to figure out a way to deliver effective health care to its citizens.
I can't wait to see Michael Moore's next movie, Sicko. He says it's "a comedy about 45 million people with no health care in the richest country on earth."
March 7, 2007: Sick and tired of being sick and tired. Urticaria/hives update: after 18 somewhat-useful-but-mostly-unsuccessful treatments, the acupuncturist finally looked me in the eye and said, "You might be wasting your money."
You have to give her credit for being honest.
So I visited an osteopath. He agreed with the allergist, who had said, "Modern medicine doesn't know much about these no-external-trigger allergies. They sometimes cure themselves in three to five years. If you're lucky."
Then, a couple of weeks ago, I started seeing a squad of homeopaths. The first two visits seemed more like psychoanalysis; all we did was talk.
But yesterday, I got The Remedy. If I understand this correctly, they believe in dosing the patient with trace amounts of a substance known to cause the same symtoms (in my case, hives). That way, the body learns how to build up its defenses and fight these symptoms in a low-pressure course of treatment. Sorta like immunization, I guess.
If this doesn't work, I'm fully prepared to consult with voodoo witch doctors.
March 17, 2007: Cause or cure? Here's a cute little anecdote from my ongoing struggle with urticaria (hives). I think you might enjoy it. I know I did...
A few weeks ago, I stepped outside the M.D. world to consult with a D.O. (osteopath). He was extremely worried the urticaria might send me into a tailspin, so he gave me a month's supply of antidepressants. I hate pills--I'm forced to take way too many already--so I threw the package into the corner and promptly forgot about it. Last night, I finally read the warning label:
"Depression is a serious condition that can lead to suicidal thoughts and behavior. Anitdepressants increased the risk of suicidal thinking and behavior (2% to 4%) in short-term studies [...]"
March 23, 2007: Me and my cannibal.
(A) Cuttlefish are not really fish.
(B) They're molluscs, related to squid, octopuses and nautiluses.
(C) They commonly range in size from 6 to 10 inches, but one of the larger species can reach a length of 5 feet, weighing nearly 33 pounds. Their life spans are generally 1 to 3 years.
(D) They eat fish, crabs, shrimp... and other cuttlefish.
(E) They have large eyes, a parrot-like beak, eight arms and two tentacles with suckers. Cuttlefish also have an internal shell, called a cuttlebone, which is the tough material given to parakeets and other caged birds as a source of dietary calcium.
(F) Cuttlefish are sometimes called the "chameleons of the sea" because of their remarkable ability to rapidly alter their skin color and texture. Their skin camouflages them from predators, and can flash a fast-changing pattern to communicate with other cuttlefish.
(G) They might be saying, "Stop bugging me, bro, or I'll eat you."
(H) In addition to their ability to influence the color of light reflected off their skin, cuttlefish can also affect the light's polarization, which is useful in signaling other marine animals, many of whom can also sense polarization.
(I) Their blood is pumped by three separate hearts.
(J) Mediterranean and East Asian cultures see cuttlefish as a food item. Although squid (calamari) is more popular as a restaurant dish all over the world, dried cuttlefish is a highly-prized convenience snack in East Asia.
(K) Cuttlefish have ink, like squid and octopuses. In the past, this ink was an important dye, called "sepia." Dr. Samuel Hahnemann (1755-1843) once treated a patient who was an artist and had the habit of wetting his sepia-filled brush in his mouth. The artist had certain chronic ailments, so Hahnemann effected a cure by advising him to stop putting the sepia onto his tongue.
(L) Hahnemann was the founder of homeopathy.
(M) I'm seeing some homeopaths who have prescribed sepia for my urticaria (hives): 3 pills under my tongue, once a day.
(N) Funny thing is, it seems to be working.
July 18, 2007: Drugs and homeopathy.
I've been very healthy during most of my life, but a stubborn case of no-external-trigger urticaria (hives) has been plaguing me for over a year. I have visited one regular doctor, one osteopath, two emergency room docs, three allergists, and three acupuncturists. None of them have been able to cure my hives, but the allergists finally brought my symptoms under control with a powerful hellbroth of prescription drugs:
1 Prednisone (steroid, immunosuppressant) 20mg pill in the morning
1 Tagamet (Cimetidine, H2 antihistamine) 300mg pill in the morning
1 Allegra (Fexofenadine, H1 antihistamine) 180mg pill in the morning
1 Zyrtec (Cetirizine HCl, H1 antihistamine) 10mg pill in the afternoon
1 Atarax (Hydroxyzine HCl, H1 antihistamine) 25mg pill at bedtime
3 Doxepin (antidepressant, sedative) 10mg pills at bedtime
1 Tagamet 300mg pill at bedtime
1 Prednisone 20mg pill at bedtime
Plus, I had to carry an emergency epinephrine (adrenaline) syringe everywhere, just in case my precariously-balanced immune system tipped into anaphylactic shock.
One of the allergists provided me with a light-at-the-end-of-the-tunnel newsflash: "These cases usually burn themselves out in three to five years."
But if you take Prednisone for a long time, your immune response is slowly crippled, and you tend to gain a lot of weight. The allergists tried to cut down the Prednisone gradually, but my hives always returned with a vengeance. [A minor bout with urticaria is much like being flayed alive... and after experiencing several full-blown major attacks, I wouldn't wish one on my worst enemy.]
I was clinically depressed, and marginally suicidal. My doctors thought I was doing great, considering.
Since the AMA and TCM (Traditional Chinese Medicine) practitioners couldn't really help, I turned to homeopaths as a last resort. Even though I had always viewed homeopathy as a fringe--if not totally quack--science, I was at the end of my rope and desperate enough to try anything.
After a few homeopathic treatments, my drug regimen is now down to:
1 Prednisone 2.5mg pill (1/16 of my previous daily intake) in the afternoon
1 Benadryl 25mg pill (over-the-counter antihistamine) at bedtime
The homeopaths are determined to wean me off drugs completely, God bless 'em. Needless to say, I now highly recommend these doctors. And they recommend reading Homeopathy: Beyond Flat Earth Medicine, for an overview.
I wish I'd read this book a year ago...
September 12, 2007: Homeopathy and the bomb squad.
I think we're getting pretty close to the end of my homeopathic treatments; I was recently given a new remedy for the final push...
Lycopodium clavatum (Stag's-horn Clubmoss or Ground Pine) is the most widespread species in the genus Lycopodium of the clubmoss family Lycopodiaceae.
It's a spore-bearing vascular plant, growing mainly prostrate along the ground. The stems are much branched, and densely clothed with small spirally-arranged leaves.
The spores of this moss are used to make sound waves visible for observation and measurement in physics experiments. These spores are also explosive, if present in the air in high enough densities.
In the past, the crushed spores were used in fingerprint powders, as a covering for explosives, as flash powder for early photography, and in fireworks.
So if I suddenly light up like a roman candle, you'll know why.
February 21, 2008: My last visit with the homeopaths. CURED IN 22 MONTHS!
Update: Cupping and Hypnotherapy.
I never blogged about the cupping administered by the acupuncturist. It was weird and fun, but not very effective. And my lovely wife just reminded me about the hypnotherapist I visited, in late 2007 or early 2008. The homeopaths recommended Sherry, and she was VERY helpful. Looking back on those two sessions with her, I think they were instrumental in helping me to gather the courage to stop using medications (traditional AND homeopathic) as a crutch.
I also never blogged about the meaning of "no-external-trigger allergy." I later found out the doctors used it as a code phrase for "stress-triggered allergy." They felt, and probably rightly so, that if they used the word "stress" to describe my condition, I would have become so stressed that I would never recover.
Sequel (Off-The-Rotator-Cuff Remarks)