Some folks just don't know when the party's over

This was supposed to be the week of reckoning. It was week twelve, the week when my lab results would determine if I would continue the treatment or not. Since my viral load was only 8,000 four weeks ago, I had no doubt that the desired zero would appear this time. I was wrong. I still have a viral load. It's 124. One hundred twenty-four. Here's my vision: of an army of 500,000 there are 124 straggling soldiers left who don't yet know the war is over. Come on, guys. Give it up. Resistance is futile. It's time to surrender. Because the number is so absurdly low, we're continuing the treatment, but there will be two weeks tacked on at the end, provided my viral load is negative when I'm tested again in two weeks, because the received wisdom is that 36 weeks of treatment are needed after you hit zero in order to achieve the desired result. If, by some twist of malignant fate, I still have a viral load in two weeks, we'll tack on yet another two weeks at the end and test again in two weeks. And so forth, I presume. Judy didn't say at what point we would give up, I suppose because she assumes that the zero will appear before too long. I suppose I'll have to assume that as well. Dr H raised my Ribavirin dosage to 1000 mg a day, up from 800. I now take 400 mg in the morning and 600 mg at night.

I reached a nadir of sorts on Wednesday night. I'd gone to yet another doctor's appointment that afternoon, this time to Dr W, who doubled my dosage of Cytomel (T3), after speculating that we might be "barking up the wrong tree." This after he looked at my labs and saw that my TSH (Thyroid Stimulating Hormone, which goes up when thyroid levels go down) was high and my T3 was low. God help you if your symptoms are atypical. We discussed my incredible deafness and he seemed to think that the best thing I can do for myself is get hearing aids. I told him that my hearing gets worse when my thyroid levels are too low or too high, but that's not typical, either, apparently.

So, anyway, on Wednesday night I ripped a largish stack of CDs to my hard drive, in preparation for making a bunch of comp CDs for the party I'm having for my sponsor on the Fourth of July. It was a lot of old music I haven't listened to in years -- the Clash, X, some of the old ska bands, Elvis Costello, etc -- and as I listened I realized that probably I will never get to hear them again the way I used to. In addition to the tinnitus, which is (pardon the pun) deafening lately, I've got the muffling and the fuzz. The muffling is, I suspect, from the swelling in my neck, my face and my jaw. I'm convinced that the tissue around my Eustachian tubes is swollen, causing the muffling and making my voice echo inside my head when I talk. It's very annoying. The tinnitus will die down when my thyroid levels get back to normal, and presumably the swelling will go down and release my poor tubes, but I'm afraid I may be stuck with the fuzz. Everything sounds fuzzy ever since I went to see Gogol Bordello with a friend, about three weeks ago. The show was great, but it was far too loud, and I forgot my earplugs. We stood too near the amps, too, so really it's my own damned fault. I was almost completely deaf after the show, and although by the next morning I'd regained some small bit of hearing, people still sounded like they were sucking helium and every noise sounded fuzzy, as though I'd blown out my speakers. It has slowly improved since then, but I have a feeling that it won't go away entirely. So, by way of shutting the stable door after the steed is stolen, I have resolved never again to go to a concert without earplugs.

On Wednesday night I listened to White Man in Hammersmith Palais, which, like every other piece of music I've heard in the last three weeks, sounded odd . It wasn't complete. There was nuance missing. That might be partly because my computer's speakers suck, but partly it's the fuzz. There are sounds my ears no longer hear. When it struck me that I may have permanently damaged my own hearing, which wasn't too great to begin with, by my own stupidity, I started to cry. I moped around for an hour or so, whining to God that it's not fair that Mick Jagger can still hear and I'm deaf as an adder. It's not fair, I tell you! Eventually I grew tired of myself and focused on something else, but the cloud of gloom still hasn't quite dissipated. I don't want to be deaf. I go to meetings and can't hear people three seats down from me. How can I participate in meetings if I can't hear? And hearing aids cost a fortune. I can't afford them. The thing that makes me want to cry, though, every time I think about it, is music. What am I going to do if I can't listen to music?

I live in hope that the Cytomel will help. My hearing was just fine in early March, before all of this thyroid business started. I had the tinnitus, of course, but it wasn't bothersome most of the time, and I had no muffling and no fuzz. I could hear people across the room as long as they enunciated. And I could hear music. So I'm praying that once my thyroid levels are normal again I will regain some of what I've lost, and I'm hoping against hope that whatever it was I damaged at the concert will heal itself. The fuzz isn't as bad now as it was last week, and last week was better than the week before, so there's always hope.

In fact, I have so much hope that I bought two tickets to see Conor Oberst and the Mystic Valley Band at Echoplex on August 27th. I'm on the email list, and when I saw who was playing I got really excited and decided that I had to go, deaf or not. Tickets went on sale last Saturday at 10:00 am, and I was determined to get two. I knew they would sell out almost instantly (I learned my lesson when the Buzzcocks played at Sunset Junction and the tickets sold out in ten minutes), so I set an alarm on my phone for 9:55 and prepared to sit at the computer, at 9:59, with my cursor hovering over the link, so I could click right when the hour turned over. I did so and snagged my two tickets. Now I just have to find someone to go with me.

And I won't forget my earplugs.