Up until now it's been all about me and my #$%@ chronic illness. That wasn't so bad, for me. Far tougher is the realization that someone you love — someone who's been the rock of your existence — may not be so invincible after all. Although nothing truly catastrophic has happened, a little piece of my heart is breaking...
It happened while we were in Germany. My husband came home one day saying he thought he'd caught a "summer flu" and laid down. For the next few days, he felt feverish on and off, and simply exhausted. After we flew home, he kept complaining of "the worst case of jet lag ever." He just couldn't get his energy back. Then one morning, our six-year-old noticed a big red circle on his back.
Later that day, he felt poorly enough to see a doctor, who prescribed a run-of-the-mill antibiotic for his "infection." The red spot grew larger.
Luckily, my brother-in-law is a physician in Germany, and after hearing about the symptoms, suggested we might be facing a case of Lyme disease. What the heck? That thing you get from ticks? We read up on it, and were not happy. Chronic fatigue, headaches, sleep disturbances, neurological and muscle joint troubles were on the list, along with long-term autoimmunity effects. But we were also told that early treatment with strong antibiotic called Doxycycline for three weeks could essentially cure the thing. Whew!
With some convincing of the local doctor, my husband scored a prescription. He started on those pills, and felt a lot better at first. He continued to recover for two weeks until one night last week, he suddenly felt very feverish and sick. He became so incoherent that I couldn't get him to sit up. My hands were shaking as I dialed 9-1-1. So energetic. Such an athlete... I always thought he'd end up dialing Emergency for me first!
In the ER, they pumped him full of medications, which made him feel much better. Then the heavily-mascara'd doctor gave him a little lecture about taking his vitamins, and looked up his blood test for Lyme antibodies, which had been taken twelve days before. (No one had bothered to communicate the results to us, btw.)
"Well, the test is negative, so you don't have Lyme. That's good news," she said, as she ushered us out with a few last tips about taking fish oil to stay healthy. If I weren't so shook up by the whole ambulance scene, I would've been furious. We're the healthiest eaters I know!
The very next morning I embarked on a Holy Internet Mission: I read everything I could find about Lyme, located the premiere specialist in the San Francisco Bay Area — by reading a discussion board from parents at UC Berkeley — and somehow managed to wrangle an appointment for that very same day. The guy was great. He knew everything about the different strains of Lyme bacteria in Europe vs. North America. He knew that this three-week slam routine with Doxycycline was common, but not always effective, and brutal on the stomach. Heck, even the various printed brochures in his waiting room talked all about how common it is to get a "false negative" on the antibody blood test. What the hell was that ER doctor thinking?! The thing about Lyme is, the longer you let it go, the more severe and chronic it gets.
As we walked out of the specialist's office, both exhausted but hugely relieved, my husband said: "Geez, I saw four doctors in the last few weeks who all told me something different, and not one of them was right. That specialist had great information, he knows everything — it kind of renews my faith in the healthcare system here."
"Not mine!" I snapped. "Because your Average Joe Patient would never get to that guy. We're only here because we're aggressive, we're educated and we know how to research the heck out of stuff, and because we have the financial resources to pay his $650 fee up front. Most people would be hosed at this point!"
"Yeah, you're right," he said, giving me a sideways look that was both contemplative and grateful.
Right now, it's mostly me who's grateful, that we were able to pounce on this thing. My guy is now on a treatment track for three full months of dual antibiotics that will probably keep his energy level low for a while. But then we expect a full recovery, according to our expert.
So now we've both faced the prospect of a spouse with a chronic illness. Now we're both ePatients. As noted, it breaks my heart a little, but Thank You, Internet, for helping us along.
NOTE: Ironically, I recalled this morning that this week is national Invisible Illness Awareness Week. And now we have two in the family.