The Common Cold Chronicles, Pt. II

In the first installment of this sad saga, I explained how two ER doctors misdiagnosed my potentially fatal allergic reaction to allopurinol as everything from a cold to “contact dermatitis.”  

I am typing this at 2 a.m. because I no longer sleep more than one or two hours a night as the “syndrome” that could have been stopped or slowed had I been correctly diagnosed and admitted continues to wreak new even more visible havoc.

Welcome to my nightmare… 

I am a slave to The Itch.  The relentless, crazy- making, teeth grating Itch.

And there is nothing I can do to calm, slow or end it.

Had I received the correct diagnosis and care when I went to the ER, I might have been spared the agony to come. 

But I did not.  So my “syndrome,” one of the most severe and dangerous allergic reactions one can have, is now too far advanced to be stopped.

I have to let it “run its course.”   And as it runs its course, it drives me to the brink of madness daily.

The cycle begins with a persistent low grade fever as the allergic reaction accelerates.   Then, a blazing red, measles-like rash begins to spread gradually outward from your chest and back down to your extremities. 

Little welts and bumps erupt within the measles rash.  And then the rash morphs into massive red blotches that consolidate and cover your entire body.  

You know when the morphing has begun because The Itch intensifies.  And none of the usual antihistamines or topical creams can stop it.  It’s drug fighting drug—a macabre  stalemate that makes this type of reaction doubly difficult to treat.

My daughter was first to notice that I also had big patches of raw pink unpigmented skin on my back—this is why many patients are treated in burn units, as I mentioned earlier.   In extreme cases, the reaction looks and blisters like a second to third degree “fire” burn and must be treated as such.

The shedding begins a few days after the blotching.  The skin begins to flake and peel. And the cycle will repeat until all of that allergen is purged from your body.  

No one can predict how many times, though I was told that an allopurinol reactions as severe as mine would take weeks, maybe months, to run its course.

There is internal damage, too.   Early on, lesions in my mouth and throat  made eating or drinking difficult.  When I tried to eat solid or hot food I could feel it injuring the tissue. 

But most of all, I am bullied by The Itch. 

I’ve had to lock myself away from the world to endure it.  I need to be able to thrash and gnash and rock and moan.  I need to be able to leap out of bed, hug myself and shudder. 

At times, the touch of a garment, bed sheet or the scratch of a tiny crumb left over from an earlier meal will bring on a full force attack.  I throw off the offending fabric or frantically sweep the crumb away and lie tray to lie still, praying for respite.

Some nights I can sleep only after my body just could not stand to be awake any longer.   I try to tire myself out by pacing the room or just standing up until my knees buckle.

Friends who came to lend a hand learned quickly to offer a quick visit to my room, and then offer their assistance to my poor exhausted daughter.  If I fell asleep while they were visiting, they did not wake me.

I could see in their eyes how much both the physical and emotional damage scared them.  It terrifies me.  I have no power over this thing.

But I do have Dr. Christopher Puca, my primary care physician.  And he is the hero of the story thus far.

The gout med had been prescribed by a rheumatologist.  So Puca had been out of that loop.  But after receiving those calls from the ER over the weekend he demanded I be in his office first thing Monday morning.

I was there early.  Desperate, discouraged and disfigured. 

The syndrome turns the skin around the mouth, nose to chin, into taut, scaly rawhide that refuses to moisturize.  I could cover up the rash, but the strange darkened skin that pulled the sore corners of my mouth into a perpetual frown could not be hidden.

But I was greeted with warm concern by the reception staff as if they had heard the ER story already. 

In fact, they probably had.  Ars Nova is not your typical medical group.  

And Puca is your typical allopathic physician.  He’s quite a character in general.  I mean that in a good way—it’s why I’ve stayed with him for so many years.

He greeted me with the news that he had been with Occupy Tucson all weekend, and was galvanized by what he’d seen.

I wasn’t surprised.  We talked politics during all of my yearly visits.  Children of the 60s, we hold very similar views.

But I also knew those talks were also an important part of the examination process.  As we conversed, he read my expressions, body language.   Only after that would the physical examination begin.

His first “prescription” was often an herbal or a dietary approach.   A med might be prescribed as well, but he preferred that I know and try other alternatives first, if there was time.

When he saw the blazing red swatches covering my body, he knew that there was no time to lose. 

He got his entire staff to call the "magic" numbers of specialists who owed him favors.  He wanted me to be seen that very day, if possible. 

I was grateful for the sense of urgency, but I also felt a tinge of guilt.  It was officially lunch time, and there was clearly something special going on.   

I had seen someone wheeling in little rolling trays full of fruit and other goodies into a room in back.  Other docs on the same floor were arriving to fill plates.

But Puca sat with his arm around me while directing the search.  They finally got one of the best dermatologists in town to agree to see me first thing the next day.  Then Puca told me how to use some of the meds I already had to help me rest a bit ‘til then.

When I got home, I sat at my computer just long enough to send them fancy chocolate dipped berries the next day, to make up for missing so much of their lunch.  

And the next morning, the young dermatologist who'd accepted my case took one look, winced, and shook his head.

“It’s the allopurinol,” he said confidently.  "There may be more to it than that, but from what I’m seeing here…that’s the culprit.”

He would confirm that diagnosis by cutting a little divot out of my skin for testing.  

I had no problem with that.  In fact, if he’d told me he needed a finger, I would’ve readily consented.

He also prescribed the monster doses of prednisone I should have received in the ER. He admitted that it might be less effective now that the reaction had gone so far. 

He also told me about that "stalemate" I mentioned earlier--it might not work at all.  But it would take a week to get the test results, and he didn't want to waste any more time.

I got the pills on the way home and slurped them down with a glass of milk as soon as I got home.  Seconds later, the prednisone began to send radiating bursts of warmth into the scarred tissues of my back.

When the incessant Itch abated for the first time in two weeks, I swooned into the first real sleep I’d had in as many days as well.

The earliest eruptions began to heal.  But new ones appeared.  And after the predisone wore off…I was left with The Itch. 

It would grow stronger and stronger as each hour passed.  By nightfall I was a crazy woman again.

I talked to my demons in the dark.  I drank ice water hungrily.  I paced.  I rolled.  I kicked and twitched.

But…some nights…I danced. 

One of those nights, I found myself dancing and singing to what must be Sting’s entire catalog.   It’s on Spotify.  And I discovered I had missed a lot of good music over the years.

I'd given him up just after his "jazz" phase, which I actually loved.   But he was becoming a parody of himself. 

The "endless orgasm" brag was the last straw for me. The saver of rain forests was now giving tantric sex advice on the talk show circuit. 

So as one of his songs suggested, I set him free.  And he returned right on time. 

Yanked out of my agony by the first notes of a blazing hot live version of Message in a Bottle, I bounced to the beat in the middle of my bed.  It brought back my college kid/rock crit days—pogoing in punk dives in Chicago.

And then I realized that the collection had been placed in a very interesting order.  As the night continued, the music became more soulful and symphonic.  There were also some old English folk tunes he’d reinterpreted…perfect lullabies.

It was like curling up in the lap of an old lover to sing songs from our shared memories. 

One of them was now stunningly apropos.

How fragile we are, he rasped to me through the darkness.

I curled up in fetal position…and wept.