If it's not one thing, it's another

Another week has passed without much in it. It was a week. It came. It went. I've been debating with myself about whether or not to write about an event which occupied several days in the beginning of the week. It's embarrassing, but what the hell. And anyway, why should a hemorrhoid be embarrassing? Lots of people get them. I never thought I'd be one of them, but then, I never thought I'd have thyroid disease. Hypothyroidism causes constipation. I had trouble with that when my thyroid first conked out three years ago, but as soon as my thyroid levels stabilized it went away and I wasn't troubled with it again until about a month ago. Once again, I blame Dr. G -- if he had listened to me in the first place, I never would have had this hemorrhoid problem. The T3 is helping, but it came too late to prevent the eruption.

It began last week. I felt some pain in the relevant area, but it wasn't bad and I ignored it until it went away. Then on Sunday, after the constipation had already gone away, suddenly it happened. I knew instantly what it was, and when I went to Wikipedia to read up on it I learned that they usually go away in a few days, so I resigned myself to a few days of discomfort. Discomfort? Oh my God, the pain! All day Sunday, all night Sunday night (I slept about two hours), all day Monday. On Sunday night I kept getting up and sitting in a few inches of water in the kitchen sink, since I haven't got a bathtub. Sitz baths are supposed to help, but I didn't really notice any improvement. I'd planned to go to the Urgent Care on Monday if it wasn't any better, but they were closed for Memorial Day. On Tuesday morning the pain was better, but the thing wasn't any smaller than it had been on Sunday, so I decided to go into the Urgent Care before work. I felt a bit silly going to the Urgent Care for a hemorrhoid, but the thought of sitting at my desk all day was more than I could bear. I was even willing to show the hideous thing to a doctor if that would lead to relief. The doctor took one look at it and said, "Oh! Ouch! That looks really painful!" You're telling me. He told me it was large enough that it should be "evacuated," and he explained that it would be a simple office procedure done with a local anasthetic. He made me an appointment for later that morning at the surgery center of the clinic.

I went home feeling weepy and sorry for myself, stopping at Rite Aid on the way to pick up the enema I was told to do before the procedure. What fun. As I drove to the clinic later I sank deeper and deeper into self-pity. It really has been sort of one damned thing after another in the last six or eight months, and I suppose it was simply time for me to reach the "why me?" point. I pulled into the parking lot and idly glanced across the street, where I saw the sign, "Cancer Center of Santa Barbara." Okay, let's put this into perspective. I have a hemorrhoid. I'm not on my way into the clinic for my weekly dose of chemo. And yes, I'm afflicted with Hepatitis C and poverty and drudgery and various other of the ills which beset mankind, and I have half the pharmacopeia on my bedside table, and it hurts to sit down, but despite all of that I'm healthy and walking upright and able to take care of myself. The self-pity gave way, if not to gratitude, at least to acceptance, and I was able to walk into the surgery center with something approaching equanimity. I met with another doctor, who also looked at my ass but who had a rather different reaction than the first doctor. He said I probably didn't need surgery. He told me that hemorrhoid surgery is one of the most painful surgeries there are. It would be done under general anasthesia and I would probably have to take three or four days off work to recover. Not to mention the pain meds. I'm terrified of pain meds. I hope I'm never faced with having to take them. I know a lot of recovering addicts who have taken them and not relapsed, but I don't want to be faced with that particular hurdle. Anyway, the doctor told me that the pain would gradually lessen and the hemorrhoid would slowly shrink. He said that if it wasn't significantly better in a week, then I might need the surgery. Phew! It's significantly better already.

So that's my hemorrhoid story. Once again, I've digressed from the point of this blog, but if I wrote solely about my experiences with Interferon I'd have very little to say. I got a bit more nervous than usual before I did my shot last night, and I had more anxiety than usual after it, I don't know why. I was nervous before I began the treatment, naturally, so my sponsor offered to come over and give me my first shot. She's a nurse, and it was comforting to watch her do it. Nurses are so matter-of-fact about these things. She just put the needle on the syringe, swabbed my thigh, stuck the needle in and pushed down the plunger. And it was all over. I'm not sure I would have been able to stick myself if I hadn't seen her do it first. My first solo shot was difficult. It had been a long time since I'd handled a syringe, but for some reason I didn't think I'd react to the feel of one in my hand. I did. It brought up all sorts of bad memories. Also, even though I'd spent years sticking myself with needles, I could barely bring myself to stick this particular needle into my thigh. It took about five minutes of slow breathing before I was able to do it. Once I'd done it the first time, it lost some of its terror, and each week since then has been better than the last, until yesterday. Still, even last night wasn't as bad as the first time. I'm getting used to it.

One last item before I sign off. I've felt tired for two weeks now, and I think I can say, officially, that I'm having a side effect. I was so sleepy on Wednesday that I barely made it through the work day, and I nearly fell asleep at the meeting I went to after work. I was in bed and asleep by a little after nine. When I first started the treatment my friend told me that she slept a lot during her treatment, and I found it hard to believe because I was having so much trouble with insomnia. I still have some insomnia, but I'm also tired most of the time. This morning I slept until nearly eight, which is unheard-of for me. And I'll just have to get through it without help. I can't drink coffee unless I'm willing to put up with anxiety, so I'm on my own. I may have to shuffle things around on my schedule to make room for more sleeping.

Week nine in review

Well. Here it is, Saturday again, time to sum up the week. Week nine was the best week I've had so far because my thyroid levels are approaching normal. I'm not sure 5 mcg of T3 will be enough, but I'm willing to give it another week or so before I make any pronouncements. As far as the Interferon goes, I'm still nearly free from side effects. I'm a bit tired, and I've noticed that my appetite has decreased, but the insomnia is quite a bit better. I must be getting used to it. I still need the Melatonin, but at least I'm able to get to sleep. I'm not always able to stay asleep, though. I woke up at three on Monday morning and lay awake, whimpering, until it was time to get up at six. I must be getting old, because one night of too little sleep means I fly at half-staff for the next three or four days. Still, I had only one night of too little sleep this week, as opposed to the five or six I'd had each week up to this point.

I want to live a normal life, as much as possible, while I'm doing this treatment. In the last few months I've wavered back and forth about the idea of signing up on a dating web site. My friend has been pushing me to sign up on Plenty of Fish, but for a long time I just didn't feel ready to take that step. "It's free," she urged. "What have you got to lose?" What, indeed, except possibly the fragile, carefully cultivated self-esteem I've developed about my own level of attractiveness to the opposite sex. Let me say right here and now that I know there's nothing wrong with me. I've been told I'm beautiful by everyone I know, and though I don't see it myself, I've arrived at a place where I'm willing to take other people's word for it. And I know how smart I am. So here I am, a beautiful, intelligent, talented woman who is fully self-supporting and free of excessive baggage and psychiatric diagnoses, and yet I get absolutely no male attention whatsoever. The friend I just mentioned says that's because I'm "different," and she's probably right. Basically, I'm suited to about two percent of the population, and if you take into account that most men of my age are either married or involved with someone, my choices narrow down even more.

I decided to take the plunge anyway, and had an interesting first week. Last Friday, when I signed up on Plenty of Fish, I accidentally placed myself in Canada. I don't know how. I told them I lived in the US, but it must have reverted back to the default country somehow. Anyway, when I was filling out the form, it asked me what province I lived in and wouldn't allow me to create the profile without choosing one, so I chose Quebec. I've always wanted to visit Montreal. I figured I could go back and change it later, but at first I didn't know how to do that, so my first experiences were all with Canadian men. Was I flattered! I think I like Canadian men. I kept getting letters from men in their early thirties, which was interesting (have I mentioned that I'm forty-four?). I even had a letter from a twenty-four year-old whose photo was essentially a portrait of his bare chest, all oiled up. He wrote, "You are one hot cougar!" I laughed so hard I nearly fell off my chair.

So, after generating all sorts of interest in Montreal, I "moved" to California and the torrent of letters ceased abruptly. It seems I'm only attractive to Canadian men. My friend told me not to despair, that because of who I am it will probably take awhile for me to find someone interesting. Okay. I left my profile up, and I even signed up on another free site, Perfect Match, which seems rather more hopeful than Plenty of Fish, but only marginally. While I was bored at work the other day I created a profile on Eharmony, and after spending ten minutes or so filling out their "personality/compatibility questionnaire," they found me all of three matches, one in Arizona, one in Tehachapi and one in San Diego. I should shell out sixty bucks a month for that? Are they insane? I've never gone back to that site, although they emailed me the other day to tell me that "Matt, from Reno, Nevada" had requested contact with me. Why? I live 350 miles from Reno and I have no interest in relocating. What would be the point?

I haven't got a lot of time to devote to romantic pursuits right now anyway, so perhaps it's for the best that I haven't landed a fish. I suppose I just want to feel like a real person. Not that I don't, but somehow being on a treatment for a disease which carries such a heavy social stigma has made a few inroads on my sense of myself as a worthy and viable human being. I fight that with everything I've got because I know to my core that there is nothing shameful about having Hepatitis C. It has been labeled a drug addict's disease, but there's also nothing shameful about being a drug addict. It's a disease, not a moral failing. As my friend Kelly often says, only a disease would make us do the things we do, to ourselves and to the people who love us the most. Only a disease would make us risk our lives and our freedom and make us give and hazard all we have in pursuit of the next fix. One reason I started this blog was to fight that stigma. I choose to remain anonymous not because I have Hepatitis C but because I'm an addict in recovery and the eleventh tradition states that I need to maintain personal anonymity at the level of press, radio and film.

So, that was the week, that was.

Catching up, part two

I just read my first post and thought it seemed a bit flat. I'm sure I can do better if I put my mind to it. I recall that I promised to write my opinion of the medical profession, but that might not be such a great idea. Probably it will come out anyway, but let's not push it.

A complicating factor in my treatment is that I have a thyroid disorder which requires me to take thyroid replacement. My thyroid went out of control three or four years ago and I was diagnosed with Graves' Disease and treated by having my thyroid zapped with radioactive iodine (I'm not convinced that I have Graves' Disease, but that's a long story for a different day). So my thyroid is now not fully functional. Anyway, just before I started the Interferon I noticed some symptoms of hypothyroidism, but when I went to the doctor and had labs done, he told me my levels were normal. I knew they weren't, but he insisted. Naturally. Why would he listen to the patient? I told him that my jaw muscles swelled every time I ate, making me look like a hamster, and I knew that was from hypothyroidism because the only other time that's ever happened was just before I started the thyroid replacement. Other symptoms were tension, muscle fatigue, anxiety, tingling in my hands and feet, deafness and brain-fog. I sat in his office and said, "Do I have to do my hamster impression? I will. I brought some gum on purpose to show you." But he said the hamster cheeks weren't a recognized symptom of hypothyroidism and they must be caused by something else. Back and forth we went, with my having to go get poked at the lab every two weeks until Dr. G. finally coughed up a prescription for 100 mcg of thyroid.

After about three days on 100 mcg (up from 88 mcg) I knew it was too much. I was stumped. If raising my dosage didn't help, what could I do about my symptoms? In despair, I hauled out The Hypothyroid Sourcebook, by M. Sara Rosenthal, and in about five minutes I had my answer. Apparently there are some people who need T3 treatment in addition to the usual T4 that I was taking. I went back and looked at all of my labs from the previous couple of months and noticed that my T3 was consistently low. It was in the normal range, but just barely. What pissed me off was that Dr. G. could easily have found this information. He's not an endocrinologist, but he knows at least one, and no doubt he has resources at his disposal. Had he believed me that my symptoms were caused by hypothyroidism, he might have done the research I did and learned what I learned.

I left Dr. G. alone and had Dr. H. write me a referral to Dr. W., my endocrinologist. During our consultation he informed me that hamster cheeks aren't a recognized symptom of hypothyroidism. I'm really getting tired of hearing that. Do they think I'm lying? I'm sure I'm not the only person who has that symptom, but I might be one of the few who has noticed it. For one thing, how often do we look in the mirror when we're chewing? But also, I have a heavy, muscular jaw, so the hamstering effect is very noticeable. I just happened to catch a glimpse of it in a mirror one day after I'd eaten some nuts, and it scared me. I thought my face was deformed, but then I noticed that the swelling went down within a few minutes. But I digress...

Dr. W., bless him, was willing to write me a prescription for T3, even though he said that T3 levels weren't a reliable guide unless they were high because they fluctuate a great deal under all circumstances. What clinched it for him was the anxiety I talked about, the deafness, and a slight tremor in my hand, which I'd only noticed that morning. He wrote it for 5 mcg, which is the smallest dose they make, and told me to take half a tablet every day for four days. If the tremor was still there and/or the anxiety was worse, I was to go up to a full tablet every day. I've now been on a full tablet for two days and am only just starting to notice some improvement. My cheeks are still hamstering, but not as much, and my muscles work a bit better than they did three days ago. The anxiety got worse on 2.5 mcg and is now easing up.

Why did I just write all of that detail? I suppose because this hypothyroid business has made the Interferon treatment just that much harder. The anxiety in particular was difficult. I had to quit drinking coffee. I was having panic attacks, which I haven't had in years, because the anxiety was caused by the tension, which simply would not go away, no matter what I did. I emailed my massage therapist friend and said, "I need a pity massage." He obliged, and I had one good night but the tension was even worse the next day. I thought I might die of anxiety. And that night I had to do my shot, which always causes a bit of anxiety anyway.

I hate being patronized by the medical profession. Why is it that so many doctors assume that their patients are ignorant morons? Yes, that's a sweeping generalization, and I know several doctors who aren't like that at all. But Dr. G. put my back up. He gets paid a lot of money to be my doctor, so why did I have to do my own research?

Happily for me, during all of this I was able to lean on Judy, the nurse practitioner who is overseeing my Interferon treatment. She is one of the kindest people I've ever met. She has given me lots of useful information about dealing with the treatment and lists of herbs that might help with sleeplessness and hair loss and so forth. She even gave me her home phone number, in case I had a question after hours. So I'm not completely down on the medical profession. Just certain aspects of it. I got spoiled by Dr. J. who was my primary care physician until she moved away and was replaced by Dr. G. It was a wrench to lose her because she was such a good doctor. She was the one who discovered that I had Hep C. I'd been tested in treatment and the result was negative, so I thought I'd escaped. But eight years later Dr. J. suggested that I have a test, just to be sure. So there are good doctors, and there's no reason why I have to put up with Dr. G. any longer. I plan to request a different primary care physician the next time I make an appointment.

I'm not sure I'm all caught up, but I'll leave it at that. Possibly more backstory will be required at a later date, but for now I think I'll just stick to the present. I intend to write one post a week, but I'm such a compulsive journalist that it might end up being more than that. In fact, it might end up being about a lot more than Interferon and Hepatitis C. A self-involved woman with a blog is a scary proposition.

Catching up

I decided when I started Interferon treatment that it might be helpful to keep track of it in some way, and a blog came to mind, but since I didn't have internet at home for quite awhile (long, dull story) I had to wait to start this. I now have embarked on my ninth week of treatment, so I have some catching up to do. About three years ago I learned that I have Hepatitis C. I had all sorts of tests, including a liver biopsy, and was told that because my liver was healthy and my viral load was low, Interferon treatment was not indicated. That was just fine with me.

Two years later, I learned that the prevailing opinion had changed, that it was now seen as desirable to treat the disease while the patient was still healthy and young. So I agreed to start treatment. I'm a recovering addict with ten years clean, so I know quite a few people who have done this treatment, and I've seen the gamut of responses. One friend was so sick from it that it was heartbreaking to see her go through it. She would do her shot on Friday night and spend the entire weekend throwing up, then crawl into work on Monday and begin her work week. She would feel somewhat okay by Friday, just in time to do her next shot. That was an extreme example, though. Most of the people I talked to said the treatment just made them feel really tired and a bit nauseated. Some lost their hair, some became anemic, some had flu-like symptoms in the couple of days following the shot each week. And a few had no side effects at all.

I began treatment on March 20, 2009. So far the only side effect I've experienced has been insomnia, and that has steadily improved over the last eight weeks. I take time-release Melatonin to help me get to sleep, and that seems to be enough. My gastroenterologist, Dr. H., who is the sweetest old man I've ever met, told me that I should be the poster child for Interferon treatment. On the down side, my particular virus is proving to be tenacious. I have Genotype 1, which is the most difficult to treat. Other genotypes respond more easily to the drug and patients with these types have only 24 weeks of treatment, as opposed to the 48 I signed up for. Dr. H. told me that the sooner the virus leaves the bloodstream, the better the chances of clearing the disease. My viral load was pretty low in the first place, so I was confident that it would disappear in the first four weeks. I was wrong. It went from 500,000 to 250,000 in the first four weeks. That's not a terrible result, but it's not as good as we were hoping for. I had my second round of labs done last Monday and learned the the viral load had dropped to 8,000 in the second four weeks. Again, not a result to despair over, but not as good as we were hoping for. It's agreed that if the viral load hasn't disappeared from the bloodstream by the twelfth week of treatment, it's pointless to continue, so I'm praying for a result of zero next time. If the virus isn't gone, I have a choice: I can stop treatment entirely and take my chances, or I can try a different type of Interferon, which would entail doing a a shot three times a week instead of one. I wouldn't mind the shots, but if my insurance co-pay goes any higher I won't be able to afford it. I can barely afford it as it is. So we'll all keep our fingers crossed for that zero.

I think that's quite enough for one post. I have more to say about the medical profession, but I'll save that for next time.