Tuesday, February 28, 2012
Life has been on the crazy side for me lately. I will admit it, I'm over committed. The fact that a lot of those overcommitments are for things I really like, such as the ballet, the theater, yoga, quilting, friends, doesn't change anything. And this is a particularly bad time for me to be over committed, because I'm not feeling well.
It started last October, when one of my many doctors noticed that I had elevated liver enzymes and/or other bad test results for my liver. That started me on a four-month odyssey of going on and off various drugs to see if my test results would improve. The fact that I had several doctors independently trying to do this did not help the situation. In January, my rheumatologist took me off Azathioprine (generic for Immuran, an immune-suppressing drug that keeps my lupus in check).
The consequence of going off my main lupus med is that I have felt like crap pretty much ever since. One of the worst problems is the lupus fatigue. Forget getting a a good, 8-hour night's sleep. I could sleep for 12 hours and I would still be tired. Getting out of bed has become a major problem. I only succeed at all because my joints hurt so much by morning that I have to get up. I have resorted to going back to bed in the middle of the afternoon. I do not mean napping, I mean going to bed. It's depressing and I can't get anything done anymore.
After another round of bad tests in early February, I got sent to a liver specialist. Fortunately, I had one who already knew me. Did you know the docs who do colonoscopies are liver specialists? Me neither, but they are. So I went to see my gastric guy, who ordered many more tests and an ultrasound. I got his conclusions last Tuesday.
The tests identified two possibilities, neither one conclusive. Either I have a tragic liver disease or I'm too fat. This is not a joke. Plan A included me having a liver biopsy, but I've had a variety of biopsies before and know what they're like, so I declined, at least for the time being. Plan B, which assumes that I have what is known as Fatty Liver Disease, is that I must lose twelve pounds in three months and get tested again to see if that fixes the problem. If it does, the dread disease is off the table. Yee-haw for losing weight. The fact that I only have to lose twelve pounds to get out of the "overweight" category does not seem like I should be plagued with a fatty liver, but who am I to argue?
If it is not fatty liver, then it is probably Primary Biliary Cirrhosis, a progressive, auto-immune liver disease with no cure except a liver transplant, which of course is not considered until you are at the dying end of it. You can probably understand why I am rooting for the fatty liver disease. The fact that I have already got more than one auto-immune disease does not make me feel good about this, though. Time will tell.
It would be fair to say I am feeling depressed. Depression plus the lupus fatigue is hard to fight. If it turns out to be PBC, the treatment is the lupus medication which they took me off last month. I see that doc next week and I am hopeful that he will put me back on it now. That would help a lot.
The really bad thing is that I have had to cut out my drinking for the duration. Those of you who know me well are wondering why I say this, because I am scarcely a drinker at all. The thing is, after our trip to Costa Rica, I acquired the very best Costa Rican rum on the market - 20 year-old Centenario. I had taken to enjoying a sip or two over cracked ice a couple times a week, just savoring the delicious rum-ness of it. Sigh, no more fabulous rum for me, at least until I know what is wrong with my liver.
Anyone interested in some good rum? Come on over and I'll give you a wee bit. All you have to do in return is describe it to me while you're sipping it. Let's all hope that I turn out to have fatty liver. I will never complain about dieting again.
Wednesday, February 22, 2012
I swear I wrote a post on Tuesday, just like I usually do. When I tried to publish it at 11:58 pm, my iPad ate it. I rewrote it. When I tried to publish that at 12:19 am, my iPad ate that, too. I give up. I'll try again tomorrow from my PC. Rotten iPad!
Tuesday, February 14, 2012
I am a cheerful person, an optimist, a half-full kind of woman. I have lived my life on these terms through thick and thin, seeing the bright side, the silver lining, and the light at the end of the tunnel without much trouble. That is not to say I don't get down, I don't worry about things. In fact, in a kind of Catch-22 joke on myself, I worry almost constantly, playing and replaying scenarios in my head, trying to get them right. This can be very helpful preparation for difficult encounters. It is less helpful when the events have already taken place, sometimes many years in the past.
I don't think this is a split personality situation. I am a cheerful and optimistic person and I find it easy to express those positive emotions. I like to talk to other people, like to let my mind range free, and, in the course of those kind of encounters, positive, upbeat ideas flow forth from me quite naturally.
My dark side is quiet and keeps to itself. I don't usually share the thoughts and feelings that reside there. I don't like to give them a voice, I don't like to depress other people, or myself, by talking about them, and they are often worries rather than realities. However, they remain to plague me.
Mostly, I worry about them when I am not otherwise occupied. Alone, driving my car; during the meditation portion of a yoga class; sitting in an uninteresting lecture; trying to go to sleep at night. That's the worst. I rarely just go to bed and to sleep. I go to bed and read, sometimes, or play a game on one of my mindless devices.
I play or read until I am falling asleep at the wheel, so to speak, then turn off the lights with the hope that I will in fact drift away to slumber land. I almost never do. As soon as my head hits the pillow, thoughts climb up out of the trenches where they have been hiding and begin lobbing thought grenades at me.
These thought grenades can be as recent as the doctor's visit I had yesterday or as remote as the fellow who ripped us off at Yellowstone National Park in 1988. The way they snake through my brain is a mystery, linkages of association so tenuous that I can hardly follow them. My brain has no problem, though, with jumping from connection to connection from the phone conversation I had today back to some seemly unrelated event from 20 years ago. The lesson I take from this is that nothing is unrelated.
Still, I am a cheerful person. I don't like to be in the position of considering unhappy events or situations. When people ask me about a difficult topic, like my health problems or my youngest daughter, I feel exposed and vulnerable. In talking about these things, I am liable to tear up and get a quaver in my voice.
Any intense emotion or situation can make my eyes fill up and my voice lose its deeper, mellower tones. I have choked up, teared up when reading my essays in public, when engaged in an energetic business transaction, and when making the public presentation of a gift to an associate. (It also happens quite regularly when I watch sappy movies on late-night TV, but I suspect that is a different category of response.)
These emotional events embarrass me, in part because I feel they embarrass other people who are present, and, often, they surprise me. Just when I am congratulating myself on my self-composure and my calm, cool demeanor, it cracks, I crack, and intense emotions that I may not even know I feel pour out like water from a breached dam. I have learned to keep a Kleenex tucked discretely at hand whenever I am in a situation that may bring about one of these moments.
I don't know why I am such a reluctant emoter. People who are self-confessed criers amaze me and cause me a bit of envy. There have been many times in my life when a good, old-fashioned crying stint would have made me feel much better and gotten me some emotional leverage. I don't cry in situations like those. Instead of being a crier, I am a leaker, and I leak when I would rather not let on that I am in distress. It is perverse.
As I age, I am becoming more accepting of this part of my nature. I am less apologetic about leaking sadness and that makes it easier for me. I am also happy that I often find myself in the company of women whose creative, artistic souls seem to me to be more accepting of these strong emotions than the more pragmatic individuals I encounter. Or maybe it is just because they are woman. It probably doesn't matter except that it is easier for me to be honestly emotional among my artist and writer friends than among almost anyone else.
I want my life to be positive just like I want my home to be tidy. In a perfect world, I would have a place for everything and everything in its place, or, as the French say, mise en place. Living, as I do, in a less than perfect world, I don't always manage that. I haven't managed to avoid sadness and disappointment in my life either. When I know company is coming, I pick things up to make my house look the way I wish it looked all the time.
When I invite people into my emotional home, I want things to look the way I wish they were, too, instead of how they actually may be - happy instead of sad, cheery instead of gloomy. And most of the time, they are happy and cheery. As I said in the beginning, I am a half-full kind of woman, cheerful and optimistic in my outlook on life. That's my story and I'm sticking to it.