Lately I've been thinking about how remarkable it is that we pay (and often quite a lot) for the privilege of doing a company's marketing for them, i.e. wearing clothes with the brand splashed on so the whole world knows who made whatever it is one is wearing. In my wardrobe there are only two brands I can think of where the brand is displayed: my tennis shoes (New Balance) and a couple of t-shirts and a sweatshirt from Old Navy. With my shoes, it takes a bit of looking to figure out who made them, while the shirts turn me into a walking billboard for Old Navy every time I wear them.
Yesterday whilst trying to catch up on a bit of blog reading I found out that Old Navy will no longer be carrying Plus sizes in their stores, though the dears will be offering their clothes online. In other words, they don't want us fatties in their stores sullying their stylish image with our enormous asses so we've been relegated to the other side of a monitor.
I for one have decided that I will not only NOT being buying clothes from them in the future (I became less inclined a few years back after buying some of their plus sized clothes online and found the sizing to be terribly inconsistent), I'm also not going to be a walking billboard for them, even if they do make kick-ass t-shirts.
Oh, and speaking of shoes...I moved my orthotics from my tennis shoes to my sandals so it's now officially summer.
Yeah, I know. Orthotics. I'm an Old Navy marketing nightmare...
Hmm...Maybe I should wear their t-shirts... ::grin::
Tuesday, May 29, 2007
Saturday, May 26, 2007
The problem with books
Tonight on Bill Moyers he was interviewing the ever eloquent Maxine Hong Kingston about writing and peace. To be honest, I was sort of listening with it in the background while I tried to catch up on email in my inbox (still haven't succeeded yet). However at one point Ms. Kingston was talking about a tragedy she suffered in the early 90s when her father died and after burying him she came home to find her house burned to the ground and the one manuscript she had of the book she had just finished writing in ashes. "I quit writing...I even quit reading," she said. The trauma was so great that this person who is so gifted at articulating tragedy was not only silenced but couldn't even read.
It made me pause from my email for a moment to wonder if trauma is part of why I haven't been able to read books the last year or so.
I know some of it has been a physical problem. Holding a book is hard. So I bought a book holder. But that hasn't changed my reading habits much (though I have been able to use it for my chronically overheating laptop). I have started to suspect that I might be very sensitive to mold as the books I have managed to finish in the last few years have all been brand new while I can't make it more than a few pages into a Kinky Friedman novel that's a county-library reject. Other used books sit on my shelves only partially read.
I don't seem to have as difficult a time reading online, probably because most material online is short -- the equivalent of only a few pages. It's a good fit for my psychometrically-tested concentration problems. And I'd imagine mold doesn't like laptops as much as paper.
Reading online feels far more like a communal act than reading a book. Blogs and articles frequently include comments, even if I only lurk. Reading a book is a lonely act, especially if you're too tired to talk or write about it afterwards. And God knows I'm already isolated enough.
But in regards to the trauma question, I know my emotions play a part. I still have a lingering anger that I can't simply get lost in a book for hours and hours like I used to. I'm used to sitting down and reading a book in one sitting, or perhaps a few sittings. I hate that I can only manage a half hour here or an hour there. It's too much of a commitment. Too much disjointedness. Too much reality intruding into whatever fictional world I'm trying to join. A reality that reminds me my brain just doesn't work like it used to.
One of Talal's research areas has been trauma theory and he's explained to me that trauma occurs when an event questions one's identity. Picking up a book I suppose is a reminder of my old identity that I miss very much.
What's funny though is that while A. has suggested that we move the books into storage to see if that might help me feel better if the problem really is that I'm sensitive to mold, I've been very reluctant. Not just because practically I don't think it's really going to be worth the effort in the long run as we're still going to be left with plenty of mold spores in the apartment. But it would also be like taking away the only friends that remain with my in my loneliness. It's comforting somehow to look up and see Anna Karenina there or the Cairo Trilogy there or A Theology of Liberation there. As well as hopeful since the first and last of those I haven't yet read but hope desperately that some day I will.
Right. This has been a bit of downer. And in some ways it has been a hard couple of weeks being so lethargic from the medication. What's been weird is that on the one hand, I'll find myself getting disoriented so easily. Yet the last few nights I've also been having moments of clarity that I haven't had in a long time. Like, I've thought of my thesis for the first time in months.
And there has been one bit of good news: my case worker has increased the number of hours my caregiver is here from 4 to 10 per month. When my case worker came on Monday to do his yearly evaluation he greeted me with "you look like you feel awful!" (I did.) That means clean laundry every week! Yay!
It made me pause from my email for a moment to wonder if trauma is part of why I haven't been able to read books the last year or so.
I know some of it has been a physical problem. Holding a book is hard. So I bought a book holder. But that hasn't changed my reading habits much (though I have been able to use it for my chronically overheating laptop). I have started to suspect that I might be very sensitive to mold as the books I have managed to finish in the last few years have all been brand new while I can't make it more than a few pages into a Kinky Friedman novel that's a county-library reject. Other used books sit on my shelves only partially read.
I don't seem to have as difficult a time reading online, probably because most material online is short -- the equivalent of only a few pages. It's a good fit for my psychometrically-tested concentration problems. And I'd imagine mold doesn't like laptops as much as paper.
Reading online feels far more like a communal act than reading a book. Blogs and articles frequently include comments, even if I only lurk. Reading a book is a lonely act, especially if you're too tired to talk or write about it afterwards. And God knows I'm already isolated enough.
But in regards to the trauma question, I know my emotions play a part. I still have a lingering anger that I can't simply get lost in a book for hours and hours like I used to. I'm used to sitting down and reading a book in one sitting, or perhaps a few sittings. I hate that I can only manage a half hour here or an hour there. It's too much of a commitment. Too much disjointedness. Too much reality intruding into whatever fictional world I'm trying to join. A reality that reminds me my brain just doesn't work like it used to.
One of Talal's research areas has been trauma theory and he's explained to me that trauma occurs when an event questions one's identity. Picking up a book I suppose is a reminder of my old identity that I miss very much.
What's funny though is that while A. has suggested that we move the books into storage to see if that might help me feel better if the problem really is that I'm sensitive to mold, I've been very reluctant. Not just because practically I don't think it's really going to be worth the effort in the long run as we're still going to be left with plenty of mold spores in the apartment. But it would also be like taking away the only friends that remain with my in my loneliness. It's comforting somehow to look up and see Anna Karenina there or the Cairo Trilogy there or A Theology of Liberation there. As well as hopeful since the first and last of those I haven't yet read but hope desperately that some day I will.
Right. This has been a bit of downer. And in some ways it has been a hard couple of weeks being so lethargic from the medication. What's been weird is that on the one hand, I'll find myself getting disoriented so easily. Yet the last few nights I've also been having moments of clarity that I haven't had in a long time. Like, I've thought of my thesis for the first time in months.
And there has been one bit of good news: my case worker has increased the number of hours my caregiver is here from 4 to 10 per month. When my case worker came on Monday to do his yearly evaluation he greeted me with "you look like you feel awful!" (I did.) That means clean laundry every week! Yay!
Monday, May 21, 2007
Bush's British accent
Abominable. Blind. Subservient. Ex-President Carter lambasts Blair for support - Independent Online Annotated
"One of the defences of the Bush administration, in America and worldwide - it's not been successful in my opinion - has been that, okay, we must be more correct in our actions than the world thinks because Great Britain is backing us."
So, basically, Tony Blair was the British accent Bush used to reassure Americans that going to war in Iraq was the right thing to do. I mean, who's going to argue with a British accent? I watch public television. I know the British are smarter than us. At least, you know, when they're speaking like public school boys.
Still very sleepy from medication. Ugh.
Friday, May 11, 2007
The gifts of illness
It's the annual CFIDS Awareness Day (well, tomorrow is but today was the lobby day -- which I did "virtually" at the CFIDS Association). Last year I shared what I've lost having CFIDS, but this year I thought I'd be a little more upbeat and share what is good about being sick.
My beloved A. If I hadn't been sick, I never would have been bored and lonely and wandering around a chatroom in the middle of the afternoon nearly five years ago. After chatting for over a year, we finally met in person in 2003 when I had a mild remission. It's funny because while I've spent so much of my time wishing I could have back what I had in 2003, it occurred to me last week that maybe 2003 was a gift -- an aberration -- that made it possible for A. and I to finally meet.
An examined life Socrates said that the unexamined life is not worth living and let's face, I've got lots o' time for examining life, some of which has been guided through the use of Cranial Fluid Dynamics (or understanding the Life Forces). And as I do more and more of that examining -- seeing the "horror and wonder that lurk...behind the usual surface of health" -- I realize what an extraordinary gift I've been given.
I appreciate life more Whether it's finding absolute awe in simply riding the bus, or just enjoying today because sometimes I don't know how many days may be left, this is definitely one of the most amazing gifts that illness bestows. Most people don't appreciate all that they're able to do until they're old and can't do all that stuff anymore. I've been able to learn that in my twenties and thirties.
It's movie night every day I've always been that person who hasn't seen whatever film people are talking about. Now I can hold my own -- so long as it's on DVD.
I get to wear my pajamas all the time While others suffer miserably in pantyhose (and we think veiling is oppressive!), I get to wear my nice comfy jammies. I've even worn them to the doctor's office and the grocery store.
I get to sleep in Granted, I wouldn't mind being able to fall asleep earlier and get up earlier (er...it's a control thing). But, I'm rarely rushed to get out of bed in the morning.
My science knowledge has increased exponentially Yeah, it's true. I'm a humanities sorta gal. I studied history and literature. I did take a chemistry class my freshman year of college and statistics during summer term a couple of years later, but that's about it. However, we did study history of science in my honors college curriculum, and I've definitely been able to put Thomas Kuhn to use. Plus, I now know stuff about human anatomy and microbiology that I never dreamed I would. Seriously. Friends and family now call me up to ask health questions, and the scary thing is I can usually answer them.
I've experienced other forms of medicine and knowledge In the last seven years I've been treated by acupuncturists, naturopaths, a homeopath, and massage therapists using a variety of modalities including reflexology and Reiki, as well as Cranial Fluid Dynamic (see above link). And through all this I've learned a lot about different ways to construct and "know" the body.
I've reconnected with my feminist self This post pretty much says it all...in the most rambling of prose...
Obviously, there are some personality qualities that have been enhanced through illness including:
I'm more assertive When I had the knee and ankle surgery that pushed my CFIDS into a full-blown disabling disease, I ended up with blood clots in my leg and lungs and then started hemorrhaging on the blood thinners given to treat the blood clots. I realized quickly that I had to start being more assertive or somebody was going to seriously kill me. I can't say I'm fearless quite yet, but I'm definitely not as passive as I was before surgery.
I'm more compassionate Had I not grown up with some sort of undefinable condition as well as being fat, I suspect I would be a very judgmental, indifferent person. I can't help but be compassionate because I require so much compassion from others.
I'm less dogmatic Certainly I'm less so when it comes to theology, but I feel like that's true with other issues as well. Not that I'm not at all dogmatic. If you read this blog much, you already know that.
I'm more comfortable with myself As I pointed out a few posts back, being sick and fat has allowed me to get off the "must be perfect" fast track that so many women my age are on.
Right. I imagine I've forgotten some thing, as well as will think of more as time goes by. And some of you with CFIDS might have your own illness gifts also.
Yeah, I know. I've been a bit quiet again on the blogging front. But damn, all I've wanted to do is sleep!
Some of that is probably the Elavil. Each week we're increasing the dose by 10mg until I hit the therapeutic dose of 50mg. Six years ago when I was on Elavil, anything over 20mg made me sleepy, with 50mg making me practically comatose. I'm at 30mg right now. The Oregon Health Plan is making me try this for what appears to be neuropathic pain in my sacrum/pelvis, instead of pregabalin (Lyrica) which my doctor originally prescribed and is also helpful for Fibromyalgia. But if the Elavil doesn't work, then my doctor thinks we'll have a better chance of convincing OHP to pay for pregabalin. You know, playing their game in the hopes of winning.
Plus, a few weeks ago I did a week-long trial of D-ribose after reading this study awhile back (as well as heard about it from other patients) and it did indeed boost my energy level, as well reduced widespread pain a little. It actually made me sort of remember what it was like to feel normal. Sort of. But as it's been a couple of weeks now since I ran out, I think I'm back to my normal achy icky-feeling self. Needless to say, I hope to get more of that after this trial of Elavil is over.
My beloved A. If I hadn't been sick, I never would have been bored and lonely and wandering around a chatroom in the middle of the afternoon nearly five years ago. After chatting for over a year, we finally met in person in 2003 when I had a mild remission. It's funny because while I've spent so much of my time wishing I could have back what I had in 2003, it occurred to me last week that maybe 2003 was a gift -- an aberration -- that made it possible for A. and I to finally meet.
An examined life Socrates said that the unexamined life is not worth living and let's face, I've got lots o' time for examining life, some of which has been guided through the use of Cranial Fluid Dynamics (or understanding the Life Forces). And as I do more and more of that examining -- seeing the "horror and wonder that lurk...behind the usual surface of health" -- I realize what an extraordinary gift I've been given.
I appreciate life more Whether it's finding absolute awe in simply riding the bus, or just enjoying today because sometimes I don't know how many days may be left, this is definitely one of the most amazing gifts that illness bestows. Most people don't appreciate all that they're able to do until they're old and can't do all that stuff anymore. I've been able to learn that in my twenties and thirties.
It's movie night every day I've always been that person who hasn't seen whatever film people are talking about. Now I can hold my own -- so long as it's on DVD.
I get to wear my pajamas all the time While others suffer miserably in pantyhose (and we think veiling is oppressive!), I get to wear my nice comfy jammies. I've even worn them to the doctor's office and the grocery store.
I get to sleep in Granted, I wouldn't mind being able to fall asleep earlier and get up earlier (er...it's a control thing). But, I'm rarely rushed to get out of bed in the morning.
My science knowledge has increased exponentially Yeah, it's true. I'm a humanities sorta gal. I studied history and literature. I did take a chemistry class my freshman year of college and statistics during summer term a couple of years later, but that's about it. However, we did study history of science in my honors college curriculum, and I've definitely been able to put Thomas Kuhn to use. Plus, I now know stuff about human anatomy and microbiology that I never dreamed I would. Seriously. Friends and family now call me up to ask health questions, and the scary thing is I can usually answer them.
I've experienced other forms of medicine and knowledge In the last seven years I've been treated by acupuncturists, naturopaths, a homeopath, and massage therapists using a variety of modalities including reflexology and Reiki, as well as Cranial Fluid Dynamic (see above link). And through all this I've learned a lot about different ways to construct and "know" the body.
I've reconnected with my feminist self This post pretty much says it all...in the most rambling of prose...
Obviously, there are some personality qualities that have been enhanced through illness including:
I'm more assertive When I had the knee and ankle surgery that pushed my CFIDS into a full-blown disabling disease, I ended up with blood clots in my leg and lungs and then started hemorrhaging on the blood thinners given to treat the blood clots. I realized quickly that I had to start being more assertive or somebody was going to seriously kill me. I can't say I'm fearless quite yet, but I'm definitely not as passive as I was before surgery.
I'm more compassionate Had I not grown up with some sort of undefinable condition as well as being fat, I suspect I would be a very judgmental, indifferent person. I can't help but be compassionate because I require so much compassion from others.
I'm less dogmatic Certainly I'm less so when it comes to theology, but I feel like that's true with other issues as well. Not that I'm not at all dogmatic. If you read this blog much, you already know that.
I'm more comfortable with myself As I pointed out a few posts back, being sick and fat has allowed me to get off the "must be perfect" fast track that so many women my age are on.
Right. I imagine I've forgotten some thing, as well as will think of more as time goes by. And some of you with CFIDS might have your own illness gifts also.
Yeah, I know. I've been a bit quiet again on the blogging front. But damn, all I've wanted to do is sleep!
Some of that is probably the Elavil. Each week we're increasing the dose by 10mg until I hit the therapeutic dose of 50mg. Six years ago when I was on Elavil, anything over 20mg made me sleepy, with 50mg making me practically comatose. I'm at 30mg right now. The Oregon Health Plan is making me try this for what appears to be neuropathic pain in my sacrum/pelvis, instead of pregabalin (Lyrica) which my doctor originally prescribed and is also helpful for Fibromyalgia. But if the Elavil doesn't work, then my doctor thinks we'll have a better chance of convincing OHP to pay for pregabalin. You know, playing their game in the hopes of winning.
Plus, a few weeks ago I did a week-long trial of D-ribose after reading this study awhile back (as well as heard about it from other patients) and it did indeed boost my energy level, as well reduced widespread pain a little. It actually made me sort of remember what it was like to feel normal. Sort of. But as it's been a couple of weeks now since I ran out, I think I'm back to my normal achy icky-feeling self. Needless to say, I hope to get more of that after this trial of Elavil is over.
Tuesday, May 01, 2007
Something's happening
Structural Changes Found in Brains of Symptomatic Gulf War Veterans - Medscape Medical News
Gulf War Syndrome is often lumped together with Chronic Fatigue Syndrome/ME and this was an interesting bit of research as it coincides with recent research showing decreased gray matter in the brains of people with ME/CFIDS, as well as other abnormalities (that's a link to Cort Johnson's summary of the brain research presented at the IACFS conference in January that I keep meaning to write about but, well, you know -- but if you get a chance, browse around his site).
"[I]t is pretty clear that something's happening to the vets' [central nervous system] CNS function and brain structure," said Dr. Roberta White of Boston University.
Um...ya think?
Don't get me wrong. I love seeing research like this. It's so nice to have something tangible showing that something is really wrong after all these years of hearing that everything is just fine.
But gawd, why why why are we having to wait so long to have someone take our suffering seriously?
Okay, I'm being a bit rhetorical there. Obviously, technology is helping the research a great deal. And I think the accusations of collusion between insurance companies and government agencies probably have a great deal of merit.
But those soldiers have been suffering for 16 years. Some of us patients have suffered even longer.
Veterans of the first Gulf War with a high number of symptoms have significant structural brain changes that correlate with functional impairment, providing some of the strongest evidence to date that there is a physiological basis for Gulf War syndrome, new research has shown.
Gulf War Syndrome is often lumped together with Chronic Fatigue Syndrome/ME and this was an interesting bit of research as it coincides with recent research showing decreased gray matter in the brains of people with ME/CFIDS, as well as other abnormalities (that's a link to Cort Johnson's summary of the brain research presented at the IACFS conference in January that I keep meaning to write about but, well, you know -- but if you get a chance, browse around his site).
"[I]t is pretty clear that something's happening to the vets' [central nervous system] CNS function and brain structure," said Dr. Roberta White of Boston University.
Um...ya think?
Don't get me wrong. I love seeing research like this. It's so nice to have something tangible showing that something is really wrong after all these years of hearing that everything is just fine.
But gawd, why why why are we having to wait so long to have someone take our suffering seriously?
Okay, I'm being a bit rhetorical there. Obviously, technology is helping the research a great deal. And I think the accusations of collusion between insurance companies and government agencies probably have a great deal of merit.
But those soldiers have been suffering for 16 years. Some of us patients have suffered even longer.
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