Right after Thanksgiving of 2006 I got an awful sinus infection, one that made me so sick I had to take a trip to the doc for medicine to bring me back among the living. Ten days later I went for a scheduled recheck and was feeling much better, except for the fact that nothing tasted right. Doc Lim assured me that I would recover from that too, and I made the statement, “I hope so, because I’d sure have to hate to live this way the rest of my life.” He laughed. “You won’t,” he said, ‘trust me.”
The doc was wrong. I have yet to regain my normal taste bud function. The sensory nerves in my taste buds no longer perceive tastes they way they always have. And strangely, even my spit has a different “taste” to it, meaning I always have a really weird taste in my mouth and I have to chew gum almost full time to keep from going nuts from the taste in my mouth. I’m in the 3rd year of what the doctors call “dysgeusia - idiopathic” – and one can imagine what that means when you see them shrugging their shoulders as they say those two words. They mean impaired taste of unknown cause and therefore untreatable.
At the end of 2006 we left Kaiser Permanente, as they wanted to reshuffle their membership to eliminate most of their aging population and did so by raising their co-payments so high we could no longer afford to stay with them. Ultimately we found a new HMO and when I finally, 4 months later, was able to get in to see my Primary Care Physician, he was sure my taste problem was caused by some pill I was taking. He sent me to a specialist. After taking NO pills whatsoever for 6 weeks, the time it takes for pill effects to get out of the system, I still had dysgeusia. “Sorry,” the specialist said, “maybe a miracle will occur. Otherwise….”
Do I believe that one day I’m going to wake up and be able to taste things normally again? I hope so but don’t believe it is going to happen. In the meantime here is a short version of how my dysgeusia affects me. Coffee tastes to me like someone poured ½ cup of salt and ½ cup of sugar into each cup. Believe it or not, I can drink it but I sure don’t like it. I cannot eat anything sweet – no pies, cakes, puddings, cookies, candy bars, etc. I can’t eat any fruits but cantaloupe or watermelon. I can’t eat any bread except for one kind of crusty roll. No milk, no cocoa. I can’t drink tap water, but I can drink ice cold bottled water or seltzer water. Diet coke goes down well. No beef or pork, lamb, bacon, pastrami, steaks. I sometimes can eat a piece of chicken IF it is highly marinated and covered with peppercorns or something similar. I can eat little bits of cheese. Most salad dressing is horrible. It is awful to buy a bottle of dressing and give it up after one taste! Such a waste. Sometimes I can eat a scrambled egg, but more often than not the first bite tastes so bad I have to spit it out.
There’s not much I can eat. Do I lose weight? No, because most of what I can eat is full of carbohydrates. I take lots of vitamins and minerals to make sure my body is not getting all out of whack, and once a year I beg and implore my young PCP to do blood work on me. He doesn’t like doing this but one time he found I was anemic, so I think it pays off to nag.
Is there anything good about this? Yes, sort of. When I first went to the new doc and told him about my taste impairment, he asked if my sense of smell was affected too? When I told him that it was not, he said “Good. If both your smell and your taste were affected we’d look for a brain tumor.” The smells, however, are a constant reminder of what I am missing out on. So sad. So sad to think that one must go the rest of one’s life without enjoying food.
I allowed myself a year to moan and groan about this. It was like grieving, and at the end of the year it was time to move on. I got tired of hearing myself talk about it, so for the most part new people I meet don’t know about this very distressing condition. Now you all know. But I won’t be mentioning it on the blog ever again!
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