A short while ago, I wrote an Open Salon post about a battle with gout that had just begun. Lots of wonderful people wrote back to express concern, so I attempted to comfort them with an update that said I had found a great doctor who was putting me on a med that would bring my uric acid levels down. We would then decide whether to continue that med or not.
I never got to make that decision. It was made for me when my body had one of the most drastic and dangerous reactions a body can have to a drug.
I should be dead. And caca can still happen.
But I’m here now. And I’m going to write about the war going on in my body here, as it rages on. And the life lessons, too.
These posts will not be as polished and perfect as they should be sometimes because the meds I'm taking to combat this thing make me a little loopy. And my emotions veer wildly, too.
But…I will tell you the truth as I experience it. Because this should not have happened to me. And I hope to make sure that it never happens to anyone else, even if all I can really do is tell the story so that someone recognizes the danger signs sooner and yells a little louder than I did when they’re told it’s just a “cold.”
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I’ll spare you the pictures but…let me give you a little description of what I looked like on that first wee hours trip to the ER. It will make what happened there even more incomprehensible.
You remember that little book about the Chinese kid who swallows up the sea and holds it in his mouth—if you’re my age you saw it on Captain Kangaroo or something. And I don't even remember why he swallows the sea.
But his face is all swollen up and his lips all pursed out and he looks like if you stuck a pin in his cheek his head would burst open like a meat balloon.
That’s what I looked like. With a big, swollen neck pouch like a bull frog, too. In fact, I sounded like a frog croaking because my glands were all swollen up and about to close.
My ears had turned to tree bark, oft slimed by a strange yellowish green substance leaking from my lumpy, ravaged lymph nodes.
I also had a really freaky, blazing red rash all over my body that scared everyone who saw it.
Except the young doctor who sent me home after what has to have been the fastest visit to the Emergency Room in recorded history. I was triaged, he felt my neck and said, “It’s a virus. It will run its course,” and sent me back home with a little paper that told me what to do for the common cold.
It also listed his name as Dr. Neil Harris. Oh yes. Minus the “Patrick” but never the less it was indeed still the name of the actor who played Doogie Howser the child doctor back when.
And I would’ve laughed but I was afraid I might code blue on the way back home, choking to death as my windpipe finally swelled shut.
But…that couldn’t happen. It was a cold. He knew it without any tests, he knew it by just feeling and not really looking at my ravaged body. I knew I wasn’t breathing right, but I left the hospital with my tail between my legs like a kid who’s been reprimanded by the principal’s office for talking back to a teacher.
I had been told I might have to go to the ER a few days before when an Urgent Care doctor looked at the beginnings of the flaming rash Doogie had seen, and ran a bunch of blood and other tests in rapid succession.
And as I related in a previous piece about this, he told me that if I was having the type of reaction he thought I was having (Stevens-Johnson syndrome or the less dire but still very serious precursor to it, DRESS) I should head for the ER at once.
"Do not wait to come here--go to the ER and have them call your primary care physician and tell him what I told you," he said.
Later, the nurse who helped check me out had me repeat those and some other instructions aloud. She especially wanted me to remember the part about not taking the drug that was apparently causing this "EVER AGAIN." The way they said and did this told me I had reason to be very concerned.
You get these symptoms when you're the 1 in 5000 to 10000 people who are allergic to this particular gout med. It causes rashes and other ugly stuff in lots of people, but only a few react as severely as I was about to.
Some will have the severe reaction suddenly after taking it successfully, symptom-free, for years. I have a feeling those are the fatalities. If it nearly killed me after only four weeks...I don't want to know what would've happened after say, four months or years.
I would later learn that it even fights the water you're told to drink and shower in trying to flush it away, making you itch and welt up as it tries to get deep down in there and do its job.
That is why it works. And also why it kills people.
I can’t understand why I didn’t go all Southside Chicago Girl on him. I think I was mostly embarrassed to be walking out of the ER only maybe 30 minutes after I got there with patients and staff looking on. But I was also too sick and scared to think straight. I had to concentrate on breathing. Yelling…maybe later.
Unfortunately, the next day, the toxins woke me up choking yet again. We headed for a different ER up our way, hoping to be taken seriously.
“Dr. Harris will be with you shortly,” the grinning young nurse informed me as I lay down on the little cot thing in one of the little cubicles in back.
“Neil Harris?” I asked.
The smile waned. I wasn’t smiling either. If looks could kill she would’ve fallen over dead on that cot with me from the one I was giving her.
“I…I don’t…really know his first name,” she said as bravely as she could. “But he’s doctor on call here today.”
I gave the Universe a wry, “You and me need to talk” smile and settled back down on the cot.
I would see Doogie again. I had no choice. But this time I took out the cards with my doctors’ names and numbers on them and insisted he speak to them, trying yet again to explain that this was NOT a cold.
He made the calls and this time had some tests run. And then put me on an antibiotic that I would learn very quickly was the one thing you DO NOT feed the syndrome I had. Because it will kill the little things you need to fight what is happening to you. And give you bigger and better infections.
But he printed out the scrip and another little handout about…I’m not sure what…and sent me home.Again, looking like a bullfrog, only this time I had a fever and my eyes were slits.
I looked so bad that the receptionist in the lobby said she hoped someone would be able to do something for me soon.
I thought, “Isn’t that…why I came here?”
Other patients looked at me askance, too. It amazed me that even people who knew nothing about medicine were obviously thinking: “This woman is allergic to something. Her throat is very big. She could choke. Maybe they should find out what is causing this before she dies and they get sued for millions of dollars by that teary eyed young daughter of hers who looks like she wants to kill someone right now.”
On my third trip in three days…I was spared Doogie. But I spent a whole day being tested for things just so that they could prove, I think, that they had done something.
None of the intravenous things they tried did a damned thing. I remained, as another truly concerned and contrite nurse noted, just as swollen around the face and neck as I had been when I came in.
Initially she’d seemed to be readying me for admission. I filled out some papers, did this odd nose swab thing and waited.
But again, instead of keeping me overnight and getting some help the next day maybe as my real physicians suggested, they sent me home with some more meds and a pat on the back.
And that’s when I realized that I really could die from this. And sent out an email S-O-S to everyone I love so that if I died they would know why.
But there’s more to it than that. This is one of those “holy shit” archetypal journeys the Universe with the wicked sense of humor sometimes asks you to take.
Actually, you’re not asked. You’re thrown in the big waves and told to deal with it. Ride ‘em or drown in ‘em, but…you’re goin’ in.
If you’re lucky, something like grace sweeps you up and sets you down in the tube…and you look down that tunnel and wink at the Universe with a cocky, “Just…gimme a minute ‘til I’ve really got this, and then we’ll get to work. I just need to get used to seeing so clearly. It’s disorienting. Bitchin’ but disorienting…”
And the Universe says, “I’ll be checkin’ in from time to time. If you really manage to survive this…we will have MUCH work to do, Grasshoppa.”
How can you tell I’ve been having wicked fever dreams?
That’s okay. I’m gonna hang ten, baby. I’m in for the ride of a lifetime and I know it.
I may thank Doogie someday if I survive.
Wait—no. That feverish I’m not.
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