Bull-crap-ola.

How many of you have told me when I’ve felt guilty about relying on you yet again for some necessary kindness that it’s not only not a bother to help but is even a distraction for you from your own day-to-day problems? Lots of you. Did you say that just to shut me up? Over concern for my health? Please. I’m not that fragile.

So why are you robbing me of the essential human tic of worrying about you like you do about me? Why do you deny me the right to fret over your hardships and troubles? Just because some jerk named Conventional Wisdom insists I can’t take on any more?

Did I ever tell you how much I admire Conventional Wisdom?

Now I’m the first to admit that at times my life is so damned complicated or painful or just plain insane I can’t handle any input. But it’s pretty obvious when that’s the case: a) I’m usually in a hospital, and b) I’m even more heavily medicated than usual. It’s not like you aren’t getting strong signals when not to trouble.

So if you don’t see the flashing signs, please, dear friends, stop sparing me!

Despite my somewhat frankensteinish life I am human. And just like the rest of you hominids I can solve everybody else’s problems with ease. Just ask me! Its my problems that are crazy nuts impossible to fix… just like yours are to you. I believe that’s what is called the human condition.

So share already.

–noun

1. Pathology. a quantitative deficiency of the hemoglobin, often accompanied by a reduced number of red blood cells and causing pallor, weakness, and breathlessness.

2. a lack of power, vigor, vitality, or colorfulness: His writing suffers from anemia…

Rrrrrrrrrrrrrrroad trip!!!

The car is tuned. It’s got new tires and is loaded down with jackets and maps and food for doggie and me and of course my camera and the tripod I always take and hardly ever use. The back seat’s converted into Otto’s Command Center so da pooch can survey the world from the comfort of his traveling bed. And we are driving down Highway 101 through the ridiculously green hills of an El Nino winter California listening to Roseanne Cash and Michelle Shocked on our way south to visit family and friends…

That’s what was supposed to happen.

Instead, Thursday I wound up in Moffitt Hospital a few pints of blood short of a six-pack, getting a transfusion while the docs scoped me out from both ends (yes: exactly that) trying to find the leak while I, delirious from lack of oxygen, a triple-whammy sedative of demerol, percocet and benadryl, and most of all too too too many medical procedures for any one lifetime, howled at the injustice of it all like a fourteen-year old grounded for a month.

Twenty-four hours later, my fluids topped up like a nursed engine with a cracked block, I walked out of the hospital with the hangover from hell and returned to my day life.

Huh?

If you cut a leg artery or your jugular or remove the tip of your finger you are immediately aware you have a problem. If you spring a leak internally however, not so much. Especially when you are in denial about any new medical problems because you’re feeling a wee bit put-upon after four years’ state-of-art medical S&M.

If you want to know how you know you have an inner leak look up melena, I’m not going to blog the details. I should’ve done something sooner: this isn’t my first internal bleed – not even my second or third. But I’m rationalizing maybe it’s the cherries I ate or maybe it’s the iron I’m taking or maybe it’s anything other than some damn disaster that will send me back to the hospital.

It was only a day or two before departure that I realized the trip was no-go. When you have no blood you have a hard time concentrating on a C.S.I. episode and you drive like a stoned alcoholic texting your next order to the bar you just left. 500 miles behind a wheel down California’s coast with no oxygen in your brain is not a good idea.

So instead of Rrrrrroad trip! I now sit at home while Otto goes on adventures with the dog walker, waiting for my hemoglobin to creep up to a functional level. Good news is, the top-up they gave me at Moffitt kicked in quick enough so I can actually read a book and do some stuff, if not exactly what I planned. Other good news is, the leak’s stopped. And it’s sunny for a change here in the Bay Area.

So: lemons, lemonade. Whatever.

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There has got to be an upper limit to how many procedures, transplants, runnings-out-of-blood, medically called-for cavity invasions, viruses and auto-immune diseases one body can handle. You think?

My deal is, I get to stay alive for some unspecified number of moments after the liver cancer and transplant. I get to be conscious, occasionally functional, and once in a while I even get to thrive. I also get to experience each and every sensation of a body running down its weave.

I’ve started and not finished a dozen posts on my health trials of the past year. One did refer to my struggle last summer just to learn that I’ve comedown two impossible–for-a-transplantee autoimmune diseases, but that’s it. I feel guilt for not having posted more.

Somehow I’ve made peace with the situation. A diagnosis and some medication to manage it – the AI’s, as I call them, will not go away until I do – helped. But somewhere along the way I lost the ability to write about it all.

If you really want to know more read up on dermatomyositis and Reynaud’s Syndrome. The acute phase of this mess, which lasted more or less from June to September, was the worst experience I’ve ever had medically. No, really: the liver transplant was a mere cut finger in comparison.

Until the Reynaud’s was under control I literally couldn’t write – rotting nerve-fired fingertips do not encourage typing. Now I’m just weary of of it all: repeating symptoms over and over to too many doctors; explaining to friends and family why I was having test A then test B and then test C then explaining to them what the docs found when they finally found something; wrapping my own head around the diagnosis because once again I achieved the impossible as someone with a transplant and a deliberately suppressed immune system can’t get an autoimmune disease except I got two… and blah and blah and blah and BLAH.

I just couldn’t whine anymore so I stopped. Better to write essays about California’s crazy seasons and anti-vaccine idiots hanging outside the H1N1 clinic and how the good old U.S. of A. is once again following California (coming soon).

So. Under the terms of my imagined deal with the Fates I live the frayed ends of a life and find the beauty and happiness where I can while trying to ignore the miseries. Denial, as I’ve pointed out, is a Good Thing.

Truth is, the Fates don’t deal. I have no idea when Atropos will snip my thread. It is chilling to know that even the gods feared the Fates. Even Zeus was subject to their whims.

I stuffed the thing in my pocket and went in.

After rolling up my sleeve and getting the poke, I dug out the crumpled paper, went up to one of the anti-vaccine guys and tapped him on the shoulder. He turned around. I silently held out the crumpled paper and stood there. Staring at me quizzically, he finally extended his hand. I dropped the crumpled yellow sheet into his hand and walked away. He looked at me and at the paper, confused.

You can’t argue with these folks. But you don’t have to carry their garbage.

2012 is exactly like every movie catastrophe you’ve ever seen: an estranged family fights for survival and the meaning of “family”; do-gooders shriek justice and compassion while everybody else panics and stabs each other in the back; heroic rescues give the audience – and the characters stuck in the mess – something to cheer. Bad guys get called-for comeuppance and sacred institutions (religious and secular) are reduced to richly deserved rubble.

Oh, and of course L.A. is destroyed. Again. Poor L.A.; no other city comes close to suffering as much cinematically as the womb of the entertainment industry. Kinda makes you wonder about the folks who run it…

There’s a lie in 2012’s marketing though, and I’m not talking about the bogus science. The movie isn’t really about the end of the world. It’s about the earth – more to the point us, humans – getting a chance at a makeover.

Sure, a good three-fourths of us are knocked off. “Civilization As We Know It” ends. Continents realign, the poles shift (to Wisconsin?), tsunamis scour half the land mass, and on. But by film’s end Things Stabilize and A New Dawn arrives – literally.

In other words, the earth – remaining humans included – gets an upgrade: a chance at a reboot to version 2.0.

And isn’t that exactly what all of us really want?

Our planet’s a mess. We’ve overpopulated it like rats on a sinking ship. We’re running out of resources, we’re only still eating because of hideous meat factories and genetic tricks made to our crops. To keep folks from thinking about all this education’s been turned into pop-culture quizzes and we’ve made a religion out of shopping.

But way down in our limbic brains we all know we’ve fucked up and hell’s to pay. Doesn’t matter who we blame – ourselves, our neighbors, those people over there, the rich, our gods or saints or sinners or politicians or just the roll of the dice – we know we all contributed and we’re all screwed.

Probably the biggest laugh in all the buzz around 2012 is the guilt some critics mention of rooting for John Cuzak et al while 6 billion other earthlings are being offed. Get real, critics! No one laments those people. Too bad about them, we tell ourselves, but when the apocalypse comes we know we’re with the elect. We will survive. This certainty isn’t just in our religions; it’s in our DNA.

What are movies like 2012 really about? What do we really want?

Another chance. And that’s what we want.

What we want is to toss away everything we’ve screwed up – in this case the whole damn world and everybody (else) in it – toss it all out like last year’s iPod and upgrade to the next version. Something newer, something trendier. More intelligent. Something like Earth, 2.0.

And we want more: we want something to force us to act, to do the right thing. Something like the realignment of the earth’s crust in 2012, say. Heaven knows we can’t do it on our own initiative: we can’t even agree whether Arctic ice is melting or if we should choose paper over plastic. Somebody – mommy? Are you there, mommy? – has to make us.

What a movie like 2012 offers is something to force us to act.

There’s another post-disaster movie out right now, Cormac McCarthy’s The Road. I haven’t seen it yet but I’ve read the book. Bleak, gray, filled with cannibals and hopelessness, strewn with wreckage, it offers no beginning to the catastrophe and no end. There are no shiny arks of salvation, no secret cooperation among nations. Just forage, disease and death.

The Road’s apocalypse is much more likely than 2012’s.

Which is why 2012 is packing the theatres and The Road will disappear in a week.

Who wants to fix problems when you can just upgrade and reboot?

I’ve been working on a few thoughts re: the healthcare “debate” we’re having in the U.S. from my perspective as a “professional consumer” of same. I didn’t plan to write this, though.

I have been seething at the treatment President Obama received addressing Congress about healthcare last Wednesday. The disrespect shown him – not just by Addison Graves Wilson of South Carolina, aka. “Joe the Heckler” but by the entire Republican caucus – was nauseating. Almost to a person, these “statesmen and women” of the opposition heckled the President waving sheafs of paper, petulantly pouted, booed and catcalled, and shot him endless hate-filled sneers worthy of a pissed-off 8 year old. One congressman even walked out for benefit of the cameras. It was disgusting.

Their venom has nothing to do with healthcare. It has everything to do with race.

Like the birth certificate flap that entertained us through the Summer, Spring’s anti-stimulus “tea parties” and pretty much every other pseudo-conflict stirred up since Obama’s election, the racial subtext of the health care “debate” is blatant.

Some people cannot abide having an intelligent, thoughtful black man in the Oval Office.

Finally someone with a pulpit has put the obvious out front and center. Maureen Dowd titled her column in yesterday’s New York Times Boy Oh, Boy, putting the missing word back into Wilson’s shout out, as in “You lie, boy!” Think about it for a nanosecond and you know she’s right. The old racist code word for black men was loud and clear.

Now, read carefully: no, not everyone who disagrees with Obama’s health care plans is a racist. Reasonable people have fiscal objections to government-run health care, philosophical objections, objections about his approach, and there are all sorts of worries about what change might do to our precarious status quo.

Are you hearing those people? No.

You’re hearing a U.S. senator boast how he’ll destroy Obama’s presidency by destroying his health care bill. You hear Master Wilson’s “liar liar” and how it’s netted him over 700 grand for re-election. You’re hearing Lindsey Graham – the so-called “reasonable” South Carolina senator – and a gaggle of other legislators calling the President a disaster.

And as always when politicians blow hard at the bottom of the barrel, they stir up muck.

Look at pictures from last week’s “tea parties”. Read the signs. You don’t need a psychic to see the real point of the protests. Obama is a “Fascist Muslim Communist!” (Will someone please tell me how anybody can be all those things at once?) Another shows Bin Laden passing the terrorist baton to Obama. Some of these fine patriots even put Obama’s picture in a pile of horse manure and took each other’s pictures standing in it. That’s a debate?

Death panels, granny-killers, black-on-white racism, a senator (Inhofe of Oklahoma this time) grandly proclaiming “I refuse to read the [healthcare] bill and I’m proud to vote against it!” Guns at town halls. Radio talk – serious – of killing the President. And anybody who has any kind of rational argument for, against, or middling on the actual issue of health care is a terrorist supporting a terrorist.

Don’t agree? Don’t think it’s racism, just strong opinions about a contentious issue? Take a look these photos from the first “tea parties” in April, set up to protest the stimulus package: “Obama’s plan: White slavery.” “The American taxpayers are the Jews for Obama’s ovens.” You look at the rest. I don’t have the stomach. The racial subtext has been front and center for the opposition from the moment Obama was elected.

The Obama presidency has brought out the best and the worst in America. So many of us have a quiet pride in our nation taking such a significant step last November, including many who disagree with him and didn’t vote for him. But at the other bottom of that barrel are those so incensed by his election they welcome him as termites welcome an exterminator. They cannot abide – abide! This! New! World!

Racism is the venom in the veins of America. It’s time to get it out – to call it out – before it kills us.

This “debate” disgusts me. And it has nothing to do with health care.

This happened yesterday. The only info you need to make sense of it are a) I was in the hospital for a few days about two weeks ago due to high fevers following an endoscopy (a look down the throat), and b) when they were looking, the docs saw something that concerned them,  declaring it Must Be Removed. I agreed. Now if only I could get it done…

Rather than polish it up and risk losing the, er, spontaneity, here’s the eMail I wrote to my friends.

Went to ENT (Ear/Nose/Throat) clinic today to get the thingy in my throat removed. The following happened:

1. Doc saw me, said situation is exactly what the docs in the hospital had said two weeks ago: growth on pharynx, probably papilloma, needs to come out. Said he’ll do an excisional (right word?) biopsy removing the whole thing (unless it extends into my brain or some other inconvenient spot). I said hooray for that!

2. Doc then repeated exam done in hospital, sticking crazy snake-camera down nostril into throat. Confirmed alien sighting and repeated all he said in #1.

3. Doc then read me my “rights” i.e., told me the risks of removal: broken teeth, breathing cessation, gagging, sore throat.. all the little things that can go wrong.

4. I said “Fine! Lets get this done!” (After you’ve had a transplant little stuff holds no terror).

5. Doc, shocked at my assumption, said: “Oh, no! We don’t do that kind of thing here!” (“Here” being the “UCSF Otolaryngology – Head and Neck Surgery” clinic. You think?) “You have to go to Parnassus (different campus, one with hospital) for that.”

6. Me: “You mean… Moffitt?”

7. Him: “Yes. It’s a hospital procedure. Surgery, actually. You’ll need anesthesia, a room, a…” he keeps speaking but…

8. …My mind stopped processing. When it recovered…

9. Me: “You mean, in Moffitt Hospital, with an IV hookup like I had two weeks ago when I was in there… and when a whole team from your department first found this thing and shared lots of looks of it through your nose camera… the same hospital where my attending doc wanted your department to take care of it right then before I went home… and where I was quite willing to stay an extra day in order to get it done… where…”

10. Doc, with slightly apologetic / mostly I’m-in-control-here look on his face: “Yes! We’ll call to schedule sometime in the next two weeks.”

11. Me: another mental blackout.

No, I did not take him out. Nor did I make a (huge) fuss. My rep at UCSF Medical Center is no worse (or better) than it was before I got there. But JEEZ LOUISE!

I also had my blood drawn at the lab, regularly scheduled. The Neanderthal in residence  gave me a hematoma (blood blister) the size of a grape.

All in all a great afternoon.

To belabor the obvious: besides being very inconvenient (and uncomfortable: the growth is irritating), think of the money wasted: another day, maybe another night in the hospital. A totally unnecessary visit to the ENT clinic to confirm what they already confirmed. Billing for same. Hospital resources wasted. My time wasted. Docs time wasted.

Usually these stories point the wagging finger of shame and blame at the insurance company/HMO. Not this time.

UCSF Otolaryngology – Head and Neck Surgery Department, come on down! This is your FAIL!

Got that?

Of these two mind-altering options – pain and meds – pain wins the reality-warp contest hands down. Report pain to medical folks and they have you rate it on a 1 to 10. I of course developed my own calibration for the scale: 1 to 3 and it’s “Huh? what pain?” Count 4 to 6 and ok, I hurt, it’s maybe even irritating, but I’m coping. COPING! (That’s 6.) Hit 7 to 9 though and pain becomes the universe. It’s all I can think about, all I can see, all I can imagine. For the last 48 hours I’ve been stuck between 8 and 9, occasionally flirting with 9.5. (What’s beyond 9? Well, 10’s passing out.) The only mystery the codeine cocktail brings to the pain-drug dance are, a) whether it’ll make me puke, and b) whether I’ll care if I do.

――

I mentioned an MRI? I was expecting (hoping?) for a full-body workout, hair follicles to toenails, that would give ANSWERS. Instead I got an extremely detailed hour-and-a-half scan of my thighs. Hold on… reality check… my thighs? Seems the docs are still looking for the smoking gun of muscle involvement in this body-devouring horror thereby giving them their oh-so-coveted diagnosis of dermatomyositis which in turn will give me… Say, docs? What exactly will a diagnosis give me?

No one will tackle that question. All I get in response is mumbled medicalese to the likes of “ruling out metastasis” (cancer) and “finding the trigger” – “trigger” being code for the infection/ fungus/ tumor/ bad karma that started this civil war back in May. So, though I don’t really have thigh problems – any more than any other spot on my body – they got scanned because, being the biggest muscles in the body, maybe they’ll offer a better chance of finding something. They’re guessing, though docs never say so directly.

Even if they find “an” answer they aren’t likely to find “the” answer. I read the literature (to their stated approval and private chagrin) and I’m not seeing much that screams “fix” at least as far as quality of life goes, no matter what flavor of autoimmune decay they finally pin to my oh-so-sore skin.

――

I set up this blog to write about my experiences getting a liver transplant. I expected it to be a humorous and triumphant narrative of how the wonders and inconveniences of modern medicine conspired to give me another shot at life after liver cancer and the requisite choreography of medical and personal missteps.

Careful what you wish for, ducky.

Two stumbling blocks to that plan quickly appeared. Rather than a six-month detour until life resumed “nominal”, the transplant sent me down an neverending dark and stormy path straight out of a child’s horror film haunted by fiery dragons needing slaying and crocodiles to be turned into shoes and bears that must be baited off the trail with toothpaste tubes and yogurt cups. All the while being chased by all manner of flesh-eating bugs. (No groans, please: I warned you I’m on pain/meds; you chose to read this far.) That is not the blog I wanted to write.

And stumbling block two? I get really tired whining all the time. To rephrase: I’m sick of me.

This might come as a surprise  – this blog’s called “Too Stupid To Die” for chrissake – but really: I was intending humor and profound thoughts, not the chronicle of a category 4 systems collapse.

Thus the Otto posts and the hummingbird chronicles and the photos, of course. But the hummers are adults now and only visit occasionally. Otto’s so distressed at my distress I’m making him sick. And my hands hurt taking a picture and changing a lens is a small torture . Wonderful.

Still, I when I can I like to turn my attention to something else. ANYthing else. At the moment I’m trying – between painful keystrokes – to finish up my first attempt at a sonnet (yes, the poem-type) about aliens finally getting here and scolding us for bad behavior. (Meds/pain, pain/meds, remember?) I’ll post it when I can’t make it any better.

――

I think we’re approaching “pain management” time. But that’s another post.

――

I’d better wrap this up. Puking’s looking less likely, but my fingers are stumbling all over themselves.

I’ll leave off with a Daily Funny, Personal Medical variety. Seems Brown+Toland, the local doctors’ medical group here in San Francisco, has informed my primary care doc that I am now considered a “complicated patient.” Complicated? MOI???

The experts juuuuust now figured that out, did they? Hilarious. It’s such a relief to know we have Authorities in charge, isn’t it? Just like in the government. And it’s so comforting to know they are on right on top of things! Paperwork, of course, will now ensue. I just better not have to fill it out with a pen. Not with these fingers.

In my whine about my latest medical issues, I mention chronic pain. Chronic pain is different from regular pain in the same way a bad mood is different from a blackshade depression. A beloved friend who knows more than most about chronic pain sent me the following. She gave me permission to reproduce it here.

Chronic Pain: A Rant by RLL

It isn’t fair-but it doesn’t give a shit about that.  It just hurts.

Most people don’t know you’re in pain.  They think you’re just in a bad mood or are just being bitchy or difficult and hard to get along with. Some still consider it malingering — a sign of weakness.  Especially when pain starts canceling plans. Others take it personally – if you loved them you’d still want to do this or that like you used to or promised you would.  It’s just a lame excuse.

Chronic pain and its side effects don’t show really, at least not like acute pain.  If you don’t have a body part split open, are not dripping blood, have something wrapped up, slung up or taped down, it can’t really be all that bad and you’re just being a big baby.  You’re just making excuses to get out of something.

You will never be in enough pain (visually) to justify most of the things you do, don’t do, cancel or change about yourself and your daily acts of living.  Thought processes, decision-making, emotional stability are now suspect.

You will never be disabled “enough” to use a handicap parking space and absolute strangers feel they have the right to grill you about it.

Pain will permeate every aspect of your psyche and your soul because it is now a permanent part of your essence.  Everything you say or think or do will be affected by how you deal with the fact of pain in your life.  Just like any chronic illness.

Unfortunately, pain has not risen to the level of illness where society is concerned.  It is a shortcoming, a weakness, a character flaw.  You don’t get judged for having the flu. You will get judged for how you deal with chronic pain.  Because you will never deal with it to other’s satisfaction.

There is a multi-faceted process to go through while you decide how you will choose to live with chronic pain.  If you try to find a cure to “beat this thing”, you will end up in shrink’s office.  Not necessarily a bad thing, especially if your shrink’s main focus in working with you to make you comfortable living inside your own skin.  Consider yourself lucky if you find someone who will help you become comfortable with being unable to do for the rest of your life less than you were able to do yesterday.  (There’s a reason I don’t write any more.)

The overwhelming majority of doctors will try to convince you that they can cure you, because they sure as hell won’t refer you out or concede failure.   This route involves endless tests and medications that will drop you to your knees.  Everyone has a cure to prescribe or opine about.  Hearing “All you need to do is…” will make you want to run.

The well-meaning, will tell you what you’ve done wrong in your life to give yourself this problem, then give you the name of their doctor, chiropractor, acupuncturist, herbalist, massage therapist, spiritual leader, nutritionist, and Dear Aunt Effie who will, most certainly, show you the error of your ways and fix you right up.  Yessiree, they’ll send you to the Real Cure.

If you decide to use prescription medications to help control the pain, or make it more manageable, or to take the edge off, you’ll need to grow a thick skin. People with illness take medicine.  People with pain take “drugs” – which is much different and considered much more of a character failing.  Doctors and health professionals will treat you like a drug seeker and repeatedly tell you that they don’t want to give you something that will actually take the pain away because they don’t want you to get addicted.  Which is your failing for being so weak. When they ask you how much of a certain drug you take, there are two standard answers:  shock that you’re taking so much (so you must be abusing it, rather than it’s ineffective for the job) or condescension if you’re taking a small amount or deliberately under-medicating – they take it to mean that the pain can’t be too bad if all you’re taking is…  Either way, you’re screwed.

There is also, still, a different standard for women.  I don’t know if that is an Orange County thing, but I’ve fought against it all my life.  I’ve seen no changes. Maybe someday…

No matter how understanding and sensitive your friends and partners and loved ones are, they can never really understand what it is like to deal with chronic pain.  They might give a shot at understanding that chronic pain is emotionally and physically debilitating, they still cannot help but reach their limit of tolerance for something they’ve never experienced and can hardly imagine in an extreme state.  Especially when the subject of their love and caring becomes too high maintenance.  At some point you become utterly, unabashedly, and unattractively human:  needy, weak, sniveling, unreasonable, incoherent, unwashed, smelly, scared, paranoid, hopeless, pathetic, in the way, useless, with no redeeming value, purpose or future.  So it invariably becomes about them instead – they’re not those things and they don’t want to put up with them in you.  Who wants to put up with that crap?  Nobody.  (As if we do.)

I have friends who no longer come around, a list of ultimatums from my partner, and a workplace that thinks all I need to do is get a prescription for hormones and take my blazer off while I work.

I also have a small core of people who were there for me before and are there for me now, for whom I have the utmost respect and a deep, deep love.  I never, ever forget that.

So, yeah, I’m pissed and I’m resentful and that’s the way the pick-up-sticks fell for me.  It could be worse.

So, yeah, I’m pissed that you now have to have chronic pain.  You deserve better.  If I could take it from you, I would.  But all I have to offer is my love and understanding.  I will always listen to/read the rants and I will always understand.  I will never, ever blame you.  You need a kindred spirit, here I am.  I might tease you but I’ll never blame you or make it about me.  Because this is only about you.

Surely two life-killing viruses, cancer, a liver transplant and all their attending “issues” is enough for one existence. You think?

Guess not.

This past month I’ve entered the brave new world of autoimmune disease. A couple of choices present themselves: one is called dermatomyositis, which is tthe operative definition at the moment, and it is NOT your friend. If you must read up, here’s a link, but don’t go there if you’re the least bit susceptible to internet-based too-much-medical-info-itis. My other option is graft versus host disease – GVHD in the jargon. This happens when a bit of the donor’s immune system gets into the recipient’s during transplant, and apparently requires (in non-marrow transplants, anyway) the recipient to have a weak immune system. Congrats, me! I win again!

The next doc who says to me, “Oh, but the odds are so small that such a thing will happen!” gets taken down.

Which option, or if it’s some other exotic autoimmune condition, is mostly a debate for medical folks contemplating how many viruses fit on a head of a pin. From my point of view, it’s all the same: think full body onset of severe arthritis, coupled with rotting fingers, inflamed mouth, and really achy muscles. And that’s just looking on the outside; I won’t let them look at my innards. This is a full-body miserable.

To put a Stephen King spin on it, it’s like aging from mid-fifties to mid-eighties in three weeks. A real joy, that. And I was so vain about my much-younger flexibility. Ah, vanity: you are so one month ago.

So now I’m being treated with HIGH DOSE PREDNISONE.

What’s really freaky about all this – beyond the miseries and the HIGH DOSE PREDNISONE (those who’ve experienced high-dose pred know why I shout; the rest of you just think Roid Rage) – is that I am not supposed to have this problem. Not in a teleological “oh why me poor me?” sense, but in a medical one. You see, the treatment for conditions like dermato-whosis-whatsis is… immune suppressant drugs. Not just any immune suppressants, but the exact ones I’m taking to keep my almost-three-year old transplanted liver happy. My immune system is already suppressed (just ask any cold virus) so I shouldn’t get no autoimmune crap.

WTF???

Lots of medical heads are being scratched over this one.

One of the dilemmas encountered writing about navigating an eternity of medical adventures is, every time you have another one, it gets harder to document and easier to whine.

Truth is, it’s hard not to whine, at least a little. I’m not Mother Theresa (actually, Mother Theresa wasn’t Mother Theresa either if you believe the reports; she complained quite bitterly about most everything). Today’s whine is because this situation is damned uncomfortable. More uncomfortable even than surgery. Yes, I’d rather be cut open again than go through this.

And I said painful, right? I’m learning a lot about chronic pain: I am reduced and humbled by it. I beg the forgiveness of everyone I’ve ever known who has been caught in its velociraptor jaws for not giving them the respect and concern chronic pain deserves.

Regular pain is to chronic pain as a bad mood is to a severe and unending depression.

Don’t know what happens next. I see three kinds of docs next week and “answers” will be “presented”. What answers, and what kind of life they lead to… well… One thing the gloomy ‘net articles all seem to agree on is, there’s no “cure” here, only “remission”. And there’s what my body’s telling me, which is I’m not leaving this People’s Republic of Autoimmune anytime soon – if ever.

Maybe a better way to phrase the question in the first paragraph of this rant is, “There’s got to be a maximum number of diseases before your mind just goes POP! and refuses to play any more.”

I’m one of those people single-handedly running up the costs of American healthcare, using just one tall, skinny body.

Too Stupid To Die, indeed.