Tonight I'm sitting here with about two degrees of fever, a very sore throat, joint aches, and severe fatigue, missing my older son's evening baseball game, and seriously resenting it. Most of my discomfort probably comes from inflammation due to lupus flare, though I almost undoubtedly have a strep throat as well. It doesn't help that my rheumie (rheumatologist) promised to call in an order for antibiotics on Friday and didn't, so while I was looking forward to getting better this long weekend, I have to wait it out until Tuesday to call the office back instead.
Generally, I'm the one who's out there encouraging lupus and other AI patients that there is life after dx (diagnosis, to you who are not professional patients). Admittedly, it's never the same as before you got sick, but you can have a pretty good quality of life, if you take good care of yourself and plan your activities carefully.
Not tonight. One of the insidious things about these diseases is precisely that by definition (chronic, incurable), they don't go away. I've lived with mine for over twenty years now; it's not that I don't know what to expect, or how to cope with them. But just every now and then, I get really sick and tired of being really sick and tired. I want to scream "It's not fair!", pound on the desk, demand a better body from whoever handed them out. I want just one single day of being a normal middle-aged woman -- one day without 13 maintenance medications, a need for at least 12 hours of sleep per night, and pain pills . Would that really fix it? Of course not. But it's appealing as all hell anyway.
I know I'll probably wake up tomorrow morning still feeling crummy, but able to go back to accepting my lot: that flares come and go, and this one will eventually go. That I'm never going to get "well" or even better, because I'm past any hope of remission and my health is gradually deteriorating. That I'll be lucky to raise my kids -- I'm lucky I've already outlived my prognosis twice. That all I can do is the best I can do. That means that I can't commit to anything that would require me to be out past about 7:30 at night, because I cave in and have to go to bed around then. And I will resign myself to those things again and be ok. After all, fighting with the facts is pointless and merely adds to my stress, and we all know that stress causes flare!
Meanwhile, I can't help wanting that one day. Me and every other lupie (lupus patient), I bet.
Have a nice day.
Saturday, August 30, 2008
Friday, August 29, 2008
Why Do I Do This?
I was IMing this morning with my husband and happened to mention that I'd spent an extra hour beyond my usual two hours a week as a volunteer on a Christian prayerline yesterday. He asked me if I'd minded.
I thought about it before I said no. It isn't obvious what I'm doing on this line in the first place, considering that I'm a Wiccan priestess. The answer is somewhat complex. A number of years ago I had an unusual medical problem and, out of desperation, accepted a friend's invitation to his church's "healing rooms". To my intense surprise, I was healed. There was no other explanation for the "spontaneous remission" of my condition that occurred. In return, I offered service to the Being who had done the healing, and it has taken a number of forms. This prayerline is one of them. I don't feel it's hypocritical. It doesn't matter to me which spiritual language I use to comfort people if they feel comforted, mine or theirs. In any event, Wicca, unlike Christianity, is not an exclusive religion. We believe that all paths are valid, including Christianity, so I'm perfectly willing to accept Yahweh as one form of divinity ... just not the only one. I suspect the organization running the prayerline wouldn't like my, um, religious diversity, however, so I don't tell them.
And that organization had just recently asked me if I was willing to stay on their substitution list. I had stalled answering them. I don't always enjoy the time I spend on the line. Some days I seem to really touch people and it's very worthwhile, but then, there are also those people who call repeatedly, year after year, just to complain and dump on the person who's there to pray for them. I feel like telling them to stop blaming God for their problems and take some personal responsibility for their lives. It gets old. So I had to really think about whether, on the whole, I was doing enough good in the world by spending time on the line that it was worth it.
I thought about some of the people I had talked to over the years who had seemed genuinely touched by their time with me, and why they were. And I realized what I had to offer that was maybe, if not unique, at least mine. I concluded that what I give them, ironically, is my pain. Being on the line turns my pain into something useful, something positive. People who are hurting badly can relate to it because they see someone else who has truly suffered, sometimes IS truly suffering, who gets through it anyway.
Because of faith? YES. Maybe not theirs, but they don't need to understand that; it's irrelevant. Does it matter if I literally believe in the Scripture I use to make them feel better? I don't think so. The point is that bootstrapping yourself out of despair is a process. Someone who is too depressed to reach out to anyone nearby reaches out to a stranger, and leaves feeling less despairing, willing to talk to someone who IS nearby, willing to try again, able to see that there is life not just after the pain but despite the pain, through the pain. They're willing to come back into the light. And I've been there: it IS a process. When I'm that depresssed, it doesn't matter what brings me back a bit, whether it's a poem, a friend's smile, or Prozac. All that matters is that something does it.
If my pain can be someone else's Prozac, it's worth my time after all. Even if most of the time I'm on the line is spent routinely listening to people ask to win the lottery or meet Mr. Right.
Kinda puts my current migraine in perspective. Still sucks, though.
Have a nice day.
I thought about it before I said no. It isn't obvious what I'm doing on this line in the first place, considering that I'm a Wiccan priestess. The answer is somewhat complex. A number of years ago I had an unusual medical problem and, out of desperation, accepted a friend's invitation to his church's "healing rooms". To my intense surprise, I was healed. There was no other explanation for the "spontaneous remission" of my condition that occurred. In return, I offered service to the Being who had done the healing, and it has taken a number of forms. This prayerline is one of them. I don't feel it's hypocritical. It doesn't matter to me which spiritual language I use to comfort people if they feel comforted, mine or theirs. In any event, Wicca, unlike Christianity, is not an exclusive religion. We believe that all paths are valid, including Christianity, so I'm perfectly willing to accept Yahweh as one form of divinity ... just not the only one. I suspect the organization running the prayerline wouldn't like my, um, religious diversity, however, so I don't tell them.
And that organization had just recently asked me if I was willing to stay on their substitution list. I had stalled answering them. I don't always enjoy the time I spend on the line. Some days I seem to really touch people and it's very worthwhile, but then, there are also those people who call repeatedly, year after year, just to complain and dump on the person who's there to pray for them. I feel like telling them to stop blaming God for their problems and take some personal responsibility for their lives. It gets old. So I had to really think about whether, on the whole, I was doing enough good in the world by spending time on the line that it was worth it.
I thought about some of the people I had talked to over the years who had seemed genuinely touched by their time with me, and why they were. And I realized what I had to offer that was maybe, if not unique, at least mine. I concluded that what I give them, ironically, is my pain. Being on the line turns my pain into something useful, something positive. People who are hurting badly can relate to it because they see someone else who has truly suffered, sometimes IS truly suffering, who gets through it anyway.
Because of faith? YES. Maybe not theirs, but they don't need to understand that; it's irrelevant. Does it matter if I literally believe in the Scripture I use to make them feel better? I don't think so. The point is that bootstrapping yourself out of despair is a process. Someone who is too depressed to reach out to anyone nearby reaches out to a stranger, and leaves feeling less despairing, willing to talk to someone who IS nearby, willing to try again, able to see that there is life not just after the pain but despite the pain, through the pain. They're willing to come back into the light. And I've been there: it IS a process. When I'm that depresssed, it doesn't matter what brings me back a bit, whether it's a poem, a friend's smile, or Prozac. All that matters is that something does it.
If my pain can be someone else's Prozac, it's worth my time after all. Even if most of the time I'm on the line is spent routinely listening to people ask to win the lottery or meet Mr. Right.
Kinda puts my current migraine in perspective. Still sucks, though.
Have a nice day.
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