Category: Health

Some Lovely Words

In 2008, after the second misdiagnosis of the terrible wasting disease that had me bedridden and wretched, I sought the opinion of a colorectal surgeon. He did a cursory (yet still excruciating) examination and pronounced me “severely diseased,” a horrifying phrase to hear while lying on a doctor’s table. He said that when I found a new gastroenterologist we needed to reconsider the possibility that I had Crohn’s disease. Which, of course, I did. I started monoclonal antibody treatment for it in 2009 and began to improve. Crohn’s does flare intermittently, but I’ve responded well to the biological medications, and in the last few years suffered only rarely.

Yesterday I had my first colonoscopy since I was originally diagnosed. It was possible that my doctor would find evidence that my disease was still active–not enough to be symptomatic, but still enough to require more medical intervention. That didn’t happen, though. From looking at my colon and ileum, he couldn’t even tell I had Crohn’s. The words I get to take away from this examination are, “complete remission.” That’s a phrase I like much better.

This Is Crohn’s Disease

Driving home I heard this story by Jack Rodolico on NPR’s Here and Now, and listened in a daze as my own hidden experiences were broadcast over the radio. Like Christina in this story, I too have to inject myself with Humira. I too woke up one day in completely intractable pain that I was embarrassed to discuss. I too was initially misdiagnosed as having ulcerative colitis. I too developed ulcers not just in my large intestine, but in my small intestine as well. Fortunately, my misdiagnosis didn’t lead to an ineffective surgical operation as hers did–I still have my colon. But this is what having Crohn’s disease is like. This is what it does to your life. Listen.

Introducing Senhor Testiculo, Your Friendly Neighborhood Megascrotum

A Brazilian testicular cancer awareness group has introduced its new mascot Senhor Testiculo, or “Mr. Balls.”

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Give Uncle Scrotor a hug” made real. Happy Friday, everyone.

Dr. House is a Wuss

For the last few days I’ve been playing DVDs of House M.D. as background noise while I work, and just heard the following, from the season 3 episode “Top Secret.”

HOUSE: I haven’t peed in three days!

WILSON:  You’d be dead.

HOUSE: I’m not counting intermittent drips.

WILSON: You’d be in agony.

HOUSE: I passed agony yesterday around 4:00.

In 2003, September through November, I experienced a frequently misdiagnosed condition that eventually turned out to be Strattera shutting down my parasympathetic nervous system.  As a result, I went about 45 days without peeing, except what came out due to over-pressure.  And I wasn’t taking a dozen Vicodin every day.  So I probably have a little less sympathy for House than the writers intended.

Waiting To Be Fixed

I’m still getting over my respiratory infection, trying to take it easy and hasten being able to start on my Humira.  I’m on Levaquin now, which will hopefully help.  But content may be light here for a little while, as my energy levels are low and my activities not particularly varied.  For now, here’s a picture of sign I drive by fairly often that amuses me, in kind of a dark, symbol of the economic times sort of way:

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So many things are in the past tense now.

Fever Dreams

I spent much of yesterday insane.  I mean this quite literally.

The highest that I actually measured my temperature was 102.6, but I suspect that there was some selection bias there, in that to measure my temperature I had to be competent to operate a thermometer.  An easier to fact-check set of statistics is items I managed to saturate with sweat: six shirts, five towels (including one beach towel), and all my pillowcases were strewn about in still-damp bundles when it came time to fill the washing machine today.  My fever finally broke sometime around 2:00 am, after which it dawned on me just how strange my cognition had been for most of the previous 24 hours.

I didn’t have an experiential referent for “fever dream” before, but yesterday I spent well over an hour in intense mental negotiation with a bottle of tylenol.  The balance of the situation had to be carefully, maintained, you see.  All of the relevant energies–both political and ethereal–taken into account, else disaster.   It was crucial that the bottle of tylenol not be allowed, under any circumstances, to notice the tension in my jaw, or all would be irretrievably lost.  This interaction between myself and the bottle was, in my mind, as furious as it was protracted.  And yet if you were to have walked into my bedroom and watched it take place, what you would have seen was me lying completely motionless for a very long time with my bloodshot eyes locked on a small white bottle sitting ten inches from my face, hair plastered to a head full to bursting with primo crazy.

Curiously, there was no visual component to this experience.  I was not hallucinating, merely beset by flagrantly nonrational concerns and obsessions.  Fever dreams.  Anyone else have experience with this phenomenon?

Finally!

I’ve been waiting for a fourth of a year to be able to take this picture:

My Humira Package

At long last, I have some medication that has a chance of being effective.  As I alluded to in my silliness yesterday, Humira is an injectable antibody for a cytokine called tumor necrosis factor alpha.  TNF-alpha is used by the immune system to mediate inflammation.  As I have inflammatory bowel disease, I am producing far too much of it.  Humira will, hopefully, inhibit this.

As it happens though, I will have to wait a little longer to find out.  After nearly four months of being on broad immunosuppression while I waited and fought for my more targeted medication, I have finally gotten sick.  I have an absurd cold or something that has me feverish and voiceless.  Meanwhile, Humira is a medicine that some people have adverse reactions to, so when I start on it any side effects need to be closely monitored. Unfortunately, one of the common side effects of starting on Humira is…wait for it…cold-like symptoms.  So until I’m over whatever I have, it will be impossible to isolate my health variables sufficiently to safely start my new course of treatment.

But hell, I’ve only been waiting to start this treatment for all of 2009.  What’s another week at the outside?  At least I have my drugs now.

Know Your Foe: TNF-alpha

The following is a classified communique, smuggled across the blood/brain barrier from counter-insurgency leaders in the cortex.

—————

*URGENT MESSAGE FOR PARTISANS OF THE DEFENDERS OF THE DIGESTIVE TISSUES*

It’s been a long battle.  No one knows better than we do how entrenched and seemingly unstoppable are the rogue forces within the immune system that persist in waging their psychotic war against the innocent cells of the alimentary canal.  And no one knows better than we do the sacrifices our allies have made in the ongoing effort to protect and preserve the digestive tract for future generations.  Up until now, our only weapon against the autoimmune offensive has been the cortisol flood.  Our adrenal compatriots have been valiant in this matter, but we all knew it was never more than a stopgap measure.  Overproduction of corticosteroids takes too much of a toll on us all to be a long term solution.

But soon we will have a new weapon.  Our enemy’s weak point has been identified, and we are poised to attack.

tnfa_crystal_structureThis is our target: tumor necrosis factor alpha.  This cytokine has been identified as the molecule the enemy is using to regulate its illegal inflammatory actions.  Without TNF-alpha, the insurgents will be unable to continue clear-cutting our villi and ulcerating our viscera.  Their hidden macrophages will be rendered impotent, their detestable engines of apoptosis will grind to a halt.  We have the intelligence we need to end this war.  And, soon, we will have the means to act on it.  But we can’t do it alone; to strike this blow, we will need to accept help from an unusual source.

Your tireless counter-insurgency leaders have for some time now been in communication with extra-corpus agents.  We are aware that the idea of opening our borders to mercenary elements may be unsettling to some, but the reality of our situation is that such an alliance is our only path to victory.  The negotiations have been long and difficult, but, thanks to these efforts, we will be able to mount a new counter-offensive within one diurnal cycle.

humira-moleculeThe operation, code named “Project Humira,” will involve the introduction of an extra-corpus produced molecule called adalimumab.  It is an antibody designed to target TNF-alpha directly.  We currently lack the means to manufacture this antibody ourselves, but we have negotiated what we believe will be a steady supply, to be introduced into the circulatory system from without.  It is our belief that, with this antibody at our disposal, we can downregulate the insurgents’ inflammatory activity and finally end their destructive madness.  The unique and irreplaceable tissues of the digestive tract will be preserved for the appreciation and benefit our daughter cells and their daughter cells after them, down through the generations.  We will know homeostasis in our time.  Victory will soon be ours.

—————

Not for distribution within active inflammation zones.  Denature after transcription.

Sick and Tired and…Happy?

Yesterday I had a tickle in my throat that metamorphosed in the night into something more akin to a forest fire.  And I’m on day 2 of a weird, intermittent nose bleed.  And as I mentioned a little while back, I’ve lately been suffering from an increase in the severity of my Crohn’s symptoms.  But for all that, I’m feeling pretty happy today, for the following reasons, listed in ascending order of importance:

  1. Magic robe.
  2. I had an appointment with my gastroenterologist on Monday, and he decided that the backwards progression of my symptoms called for several aggressive steps to be taken on my behalf, including giving me stronger pain meds.  So now I have a magic robe and a big bottle of hydrocodone.  Even at this level of pain, hydrocodone seems to be strong enough to keep Zelazny’s Toothache at bay.
  3. If you have clicked over to the “Writing” tab since last night, you will have noticed that there is now a firm publication date for the story of mine that Strange Horizons is publishing.  I’m going through the galley now.
  4. I’ve spent the last three months on prednisone (which I was only supposed to be on for a matter of weeks) due to a protracted and ridiculous battle with my insurance company.  As of this morning, that battle is over.  I am finally going to be allowed to start on one of the class of medications my doctor first prescribed for me back in January.  If things go as planned, I will finally have a gleaming syringe full of specially tailored monoclonal antibodies delivered to me on Friday.

I’ve been putting off writing up a long, detailed account of The Harrowing Tale of E. J. and the Crohn’s until the insurance issues were resolved one way or another.  If I actually get my meds on Friday, that will give the narrative enough closure for me to be willing to commit it to text.  I expect it will be somewhat cathartic to write, though I can make no promises that it will be particularly pleasant to read.  And I might wait a little while to post it, as I’m not convinced that thousands of words about misery and blood and pain are what I want on the front page of this site when my first published story goes live.  But if my discussion of my health issues up to this point has, to borrow a phrase from Neal Stephenson, sounded like the terse mutterings of a pilot at the controls of a damaged plane, know that that has been more or less by design.  For the last 2/3 of a year, my life has been awfully one-note; limiting the degree to which I let it dominate my conversation has been an intentional coping strategy to force me to pay attention to more positive things.

Powerful Medicine

Meanwhile, on Twitter….

glorioushubris Confession: When sick earlier this week, I impulse-bought a gold and black polyester robe embroidered with dragons to make me feel better.

glorioushubris Further confession: it totally worked. I am a medical genius.

mkazoo @glorioushubris Picture? I think such a robe should be documented for posterity.

KatWithSword @glorioushubris totally agree w/ @mkazoo Please give us photos

lnaturale @glorioushubris How could it not?

charitylarrison @glorioushubris I imagine you reading elric novels in it

kellysue @glorioushubris pix or it didn’t happen

aacooper @glorioushubris If only there were a medical version of the arXiv, you could share your discovery with mankind!

I bend to the will of the collective.  My robe:

robe01

Close up of one of the dragons:

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Did I mention the robe is reversible?  It is totally reversible:

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