Dollhouse version of a hoarder's house by Carrie M Becker
Saturday, January 14, 2012
Thursday, January 05, 2012
Just sayin
“We found that most [study] participants frequently adhered to a gluten-free diet, and this greater compliance with diet was related to increased vitality, lower stress, decreased depressive symptoms and greater overall emotional health,” study co-author Josh Smyth, a professor of bio-behavioral health and medicine at Penn State University, said in a university news release.
“However, even those people who were managing their illness very well reported higher rates of stress, depression and a range of issues clustered around body image, weight and shape when compared to the general population,” he added.
Suck on that, short term disability deciders.
Thursday, December 22, 2011
With thanks to Liam, who reminded me of this poem. Happy Solstice, all.
from Toward the Solstice
by Adrienne Rich
...If history is a spider-thread
spun over and over though brushed away
it seems I might some twilight
or dawn in the hushed country light
discern its greyness stretching
from molding or doorframe, out
into the empty dooryard
and following it climb
the path into the pinewoods,
tracing from tree to tree
in the failing light, in the slowly
lucidifying day
its constant, purposive trail,
till I reach whatever cellar hole
filling with snowflakes or lichen,
whatever fallen shack
or unremembered clearing
I am meant to have found
and there, under the first or last
star, trusting to instinct
the words would come to mind
I have failed or forgotten to say
year after year, winter
after summer, the right rune
to ease the hold of the past
upon the rest of my life
and ease my hold on the past.
If some rite of separation
is still unaccomplished
between myself and the long-gone
tenants of this house,
between myself and my childhood,
and the childhood of my children,
it is I who have neglected
to perform the needed acts,
set water in corners, light and eucalyptus
in front of mirrors,
or merely pause and listen
to my own pulse vibrating
lightly as falling snow,
relentlessly as the rainstorm,
and hear what it has been saying.
It seems I am still waiting
for them to make some clear demand
some articulate sound or gesture,
for release to come from anywhere
but from inside myself.
A decade of cutting away
dead flesh, cauterizing
old scars ripped open over and over
and still it is not enough.
A decade of performing
the loving humdrum acts
of attention to this house
transplanting lilac suckers,
washing panes, scrubbing
wood-smoke from splitting paint,
sweeping stairs, brushing the thread
of the spider aside,
and so much yet undone,
a woman's work, the solstice nearing,
and my hand still suspended
as if above a letter
I long and dread to close.
from Toward the Solstice
by Adrienne Rich
...If history is a spider-thread
spun over and over though brushed away
it seems I might some twilight
or dawn in the hushed country light
discern its greyness stretching
from molding or doorframe, out
into the empty dooryard
and following it climb
the path into the pinewoods,
tracing from tree to tree
in the failing light, in the slowly
lucidifying day
its constant, purposive trail,
till I reach whatever cellar hole
filling with snowflakes or lichen,
whatever fallen shack
or unremembered clearing
I am meant to have found
and there, under the first or last
star, trusting to instinct
the words would come to mind
I have failed or forgotten to say
year after year, winter
after summer, the right rune
to ease the hold of the past
upon the rest of my life
and ease my hold on the past.
If some rite of separation
is still unaccomplished
between myself and the long-gone
tenants of this house,
between myself and my childhood,
and the childhood of my children,
it is I who have neglected
to perform the needed acts,
set water in corners, light and eucalyptus
in front of mirrors,
or merely pause and listen
to my own pulse vibrating
lightly as falling snow,
relentlessly as the rainstorm,
and hear what it has been saying.
It seems I am still waiting
for them to make some clear demand
some articulate sound or gesture,
for release to come from anywhere
but from inside myself.
A decade of cutting away
dead flesh, cauterizing
old scars ripped open over and over
and still it is not enough.
A decade of performing
the loving humdrum acts
of attention to this house
transplanting lilac suckers,
washing panes, scrubbing
wood-smoke from splitting paint,
sweeping stairs, brushing the thread
of the spider aside,
and so much yet undone,
a woman's work, the solstice nearing,
and my hand still suspended
as if above a letter
I long and dread to close.
Wednesday, December 21, 2011
Monday, December 19, 2011
Some Organizations Pander Artlessly
You don't have to be a nerd to understand that SOPA (Stop Online Piracy Act, in real life) is a bad, bad thing for the internet. Not least because many legislators don't understand what they're voting on. Or this.
According to wikipedia, "The bill would allow the U.S. Department of Justice, as well as copyright holders, to seek court orders against websites accused of enabling or facilitating copyright infringement. Depending on who requests the court orders, the actions could include barring online advertising networks and payment facilitators such as PayPal from doing business with the infringing website, barring search engines from linking to such sites, and requiring Internet service providers to block access to such sites."
Block. access. to. a. site.
Got a can of coke in your hand in that facebook profile pic? Could be a felony conviction, up to 5 years in jail. Not kidding. (And that's two copyright infringements right there!)
From boingboing:
According to wikipedia, "The bill would allow the U.S. Department of Justice, as well as copyright holders, to seek court orders against websites accused of enabling or facilitating copyright infringement. Depending on who requests the court orders, the actions could include barring online advertising networks and payment facilitators such as PayPal from doing business with the infringing website, barring search engines from linking to such sites, and requiring Internet service providers to block access to such sites."
Block. access. to. a. site.
Got a can of coke in your hand in that facebook profile pic? Could be a felony conviction, up to 5 years in jail. Not kidding. (And that's two copyright infringements right there!)
From boingboing:
How SOPA will break DNS: In case you were trying to figure out how broken the Internet will be if SOPA passes, have a look at this article and this article from DynDNS, one of the world's leading DNS providers.If you think this is all a bunch of goldarned hooey, contact your legislator and tell them so. You can tell them I sent you.
Monday, December 05, 2011
Oh, facebook
So I actually went out on Friday night to the artwalk, which isn't something I do all the time... Although when I do, it always seems to be winter. The truth is I don't like crowds, and getting tipsy on free, cheap wine is actually something to be weighed against the hangover that comes from free, cheap wine. My, how times have changed.
I had read about this facebook project, and was kind of excited to be interviewed for part of it (although really I did it to get yet another awkward picture of me posted online) at the artwalk last week. My photo (awkward!) is up on the facebook page of the facebook project, but none of my lengthy "one or two sentences" answer is attached yet.
I have been trying to figure out whether the project is completely masturbatory, or if it's the kind of sociographic-ish thing I'm into, and I haven't made up my mind. In its favor, I like art that is participatory, and I get really excited about anything that has the vaguest whiff of radio about it, which the recorder that was used to capture my half-formed ramblings about facebook friendship did. I'm looking forward to see where this project goes.
I had read about this facebook project, and was kind of excited to be interviewed for part of it (although really I did it to get yet another awkward picture of me posted online) at the artwalk last week. My photo (awkward!) is up on the facebook page of the facebook project, but none of my lengthy "one or two sentences" answer is attached yet.
I have been trying to figure out whether the project is completely masturbatory, or if it's the kind of sociographic-ish thing I'm into, and I haven't made up my mind. In its favor, I like art that is participatory, and I get really excited about anything that has the vaguest whiff of radio about it, which the recorder that was used to capture my half-formed ramblings about facebook friendship did. I'm looking forward to see where this project goes.
Monday, November 28, 2011
Back to reality
I'm returning to work (very) part time tomorrow. If you can, send me thoughts of energy and strength; it's the beginning of a grand experiment.
(photo via http://backstoryradio.org)
(photo via http://backstoryradio.org)
Sunday, November 27, 2011
I've been feeling foresty
So here:
In a Word
nemophilist
n. one who is fond of the forest
chiminage
n. a toll for passage through a forest
Original Page: http://feedproxy.google.com/~r/FutilityCloset/~3/Tr1tfO1CCAM/
Sunday, November 20, 2011
Wednesday, November 16, 2011
Why feminists shouldn't hate Twilight quite so much (maybe)
"This is an uncomfortable place for feminists, because this heroine is not particularly good at actualizing herself. Bella waits, she wallows, she thinks, and feels, and worries, and wonders. She does not actualize in the sense we have come to expect from our heroines, an expectation that, I might point out, is quite often based on a masculinist understanding of what being effective in the world looks like. Lisbeth Salander, the heroine of the popular The Girl With a Dragon Tattoo series, is emotionally stunted but, damn it, she actualizes herself! She punishes the people who hurt her, she sleeps with whomever she wishes, she zips around on a motorcycle, and she's a master computer hacker. In other words, our actualized female heroine might as well be a tiny man"
http://thehairpin.com/2011/11/our-bella-ourselves
(via the awl)
Saturday, November 12, 2011
Chinese elderly citizens' choir covers Lady Gaga's "Bad Romance"
Chinese elderly citizens' choir covers Lady Gaga's "Bad Romance"
Video Link: "Lao Lai Qiao Gaga," from Hunan TV, China. (via @Theremina)
Original Page: http://feeds.boingboing.net/~r/boingboing/iBag/~3/-JEsYqlcc0Y/chinese-elderly-citizen-choir.html
Friday, November 04, 2011
Sunday, October 23, 2011
Please hold your applause till the end
Quick announcement: I am the proud owner of FIVE new pounds! Apparently the Hershey bar/ensure diet is working.
Friday, October 21, 2011
Ability
I have been resisting defining myself as disabled, even temporarily. I have no doubt at all that this is because of ableism on my part, with a hefty dose of good old New England Puritan work ethic thrown in: those who can't do for themselves are lazy; not working is sin; anything other than complete self-reliance is weakness. Well, that last bit may be some of my own issues as well.
I've been working since I was 14. The only time I have not worked was because of layoffs. I returned to full time work after 7 weeks of maternity leave. I've worked up to three jobs at a time to make ends meet. I work.
But when my short-term disability claim was denied, I had to reconsider. I reflexively thought, "what are these people thinking? I CAN'T work right now, even though I want to." And then I recoiled against the truth of that thought.
Can't.
It's the truth. I am temporarily unable. I am lucky in that this is not (I hope) a permanent situation. I will get better, with time and care.
But for now, I can't, and now I need to prove that for an appeal. That means embracing my status without judgment or shame. It's not easy, and it adds to my stress and depression, but it's the absolute truth.
When I used to do anti-oppression trainings, I used to say that if you don't see some kind of -ism as a privilege, you probably have that privilege. It's easy to recognize your own lack of privilege: ask a woman if sexism exists and she'll most likely tell you a dozen stories that prove that it does. Ask a queer person if heterosexism or genderism exists and they could open magazine and show you six examples in six seconds. But while I have recognized ableism as a sort of abstract problem, I had never experienced it on my own, and never had to confront it in my own self.
And here it is, another lesson sent to me by the universe to be learned the hard way. I am learning, I am getting better, and I will carry this lesson forever.
I've been working since I was 14. The only time I have not worked was because of layoffs. I returned to full time work after 7 weeks of maternity leave. I've worked up to three jobs at a time to make ends meet. I work.
But when my short-term disability claim was denied, I had to reconsider. I reflexively thought, "what are these people thinking? I CAN'T work right now, even though I want to." And then I recoiled against the truth of that thought.
Can't.
It's the truth. I am temporarily unable. I am lucky in that this is not (I hope) a permanent situation. I will get better, with time and care.
But for now, I can't, and now I need to prove that for an appeal. That means embracing my status without judgment or shame. It's not easy, and it adds to my stress and depression, but it's the absolute truth.
When I used to do anti-oppression trainings, I used to say that if you don't see some kind of -ism as a privilege, you probably have that privilege. It's easy to recognize your own lack of privilege: ask a woman if sexism exists and she'll most likely tell you a dozen stories that prove that it does. Ask a queer person if heterosexism or genderism exists and they could open magazine and show you six examples in six seconds. But while I have recognized ableism as a sort of abstract problem, I had never experienced it on my own, and never had to confront it in my own self.
And here it is, another lesson sent to me by the universe to be learned the hard way. I am learning, I am getting better, and I will carry this lesson forever.
Sunday, October 16, 2011
Opiate abuse and Occupation
Good article in the Press Herald on opiate abuse; the first of a five-part series. It's like they've been hanging out at my job. (But still really do a good job not demonizing poor people.)
The epidemic has affected Mainers of all ages and backgrounds; middle schoolers and senior citizens, clam diggers and doctors.
"No family is immune from this particular issue,"; said Troy Morton, chief deputy of the Penobscot County Sheriff's Office. "They are the youngest of kids, in their early teens, and people in their 70s. They are the poorest of the poor and the richest. There are no boundaries."
Abuse often starts among teens, who don't understand the danger and are more vulnerable to addiction. Addiction, meanwhile, is most common among young adults who were in their teens when the pills first flooded into Maine communities.
Link to the full story:
Painkillers in Maine: A cure that came with a curse
But I think the real solution is a rift that is very deep in our society. The tea party and the 99% exemplify this in a (relatively) positive way (in the sense that all activism is positive, not that I always agree with it).
I think that everybody feels it to some extent--those that don't hide their feelings behind addictions to drugs, alcohol, shopping, tv--all the things that distract us from what's really happening around and within ourselves.
I don't know what it is that is broken. Or the many things, more accurately. Maybe it's a lack of hope, explaining the popularity of Obama's campaign messaging and why it resonated with so many people. We want change; we want reason to hope. We want to find hope and love within ourselves, and reflected in the society in which we live.
I'm not nostalgic for a time that seems simpler in retrospect. I'm interested in how to move forward, using those lessons of history, to see a completely different society.
I don't know if it would work, given the size of the united states. Perhaps it would help to divide the country into regional blocs. Perhaps it would help if gas went up to $6 a gallon and people were forced to interact with each other on public transportation, and local food became cheaper than imported.
Maybe if student loan debt were forgiven, like some of the 99% propose, a generation would see hope instead of a crushing future of debt payments. Maybe Internet should be funded and provided by the government, like libraries, so that people can communicate with each other in the modern day versions of traditional coffee-houses, exchanging ideas, debating, and engaging with each other. (And watching videos of cute kittens too, of course. And pr0n, inevitably, people being people).
Until this is done, people will continue to numb themselves from the incredible stress of 21st century living in whatever is the cheapest, easiest way. It's not even about the drug itself, I think--although addiction makes stopping incredibly difficult--it's about a people divided and confused, inundated into apathy, hopeless and lost, waiting for the bright shiny future we were promised--a future that actually waits just on the other side of a collective demand for it.
Tuesday, October 11, 2011
Shared with permission
I Am From
by The Teen
I am from Jen, [grandpa], [grandma]*
I am from ham and potato eaters, raw vegetable eaters, and bay leaves
From people who love to sing and play word games
I am from “love everyone” to “lieblings”
I am from Christians and Pagans
From a secretary, a president, a seamstress –but mostly from social working
From Munjoy Hill and the blueberry field
From gardens and deer surrounded by green
I am from bubbly, fanatical, but also confused and angry.
I am from tea, a bunny, embroidery and walking
I am from all over the world, but the best place is home
*I did not have their permission to link their names with this blog, so they are redacted.
by The Teen
I am from Jen, [grandpa], [grandma]*
I am from ham and potato eaters, raw vegetable eaters, and bay leaves
From people who love to sing and play word games
I am from “love everyone” to “lieblings”
I am from Christians and Pagans
From a secretary, a president, a seamstress –but mostly from social working
From Munjoy Hill and the blueberry field
From gardens and deer surrounded by green
I am from bubbly, fanatical, but also confused and angry.
I am from tea, a bunny, embroidery and walking
I am from all over the world, but the best place is home
*I did not have their permission to link their names with this blog, so they are redacted.
Saturday, October 08, 2011
Truth
The last two posts may have given the impression that I am despairing and lost or whatever. But the truth is that, while I am going through a tough time, I think that this time serves a purpose. The last few years have been tough, and it's catching up with me. I have been given this grace period to recover both my body and mind and soul. It's a gift, and I'm grateful for it. Thank you for the support of my friends who read here; it means a lot to me.
Moving right along... here's some handy info if you find yourself in a bad situation during, say, a demonstration (with the caveat that NOBODY should DEFY the POLICE, of course, and also there has been a report that police zipties use metal clips and that this method is much harder in that situation. Not that you would run away from the police, OF COURSE. Because that would be ILLEGAL.)
Moving right along... here's some handy info if you find yourself in a bad situation during, say, a demonstration (with the caveat that NOBODY should DEFY the POLICE, of course, and also there has been a report that police zipties use metal clips and that this method is much harder in that situation. Not that you would run away from the police, OF COURSE. Because that would be ILLEGAL.)
Friday, October 07, 2011
All The Things
I do seem to be living under my own personal mercury retrograde. These last two weeks have been not just a shitstorm, but a shit pancake with a shit cupcake for dessert served on the nice silver.
I made a list tonight with my bro (not a relative, my bromance bro) of things that I don't want to talk about tonight and they include:
1. My atrophied intestines*
2. My ex-fiancee and the circumstances surrounding the end of our relationship
3. Celiac disease
4. Facial tattoos**
5. Money
6. Disability insurance
7. Medical records
8. Nonpayment of child support
I of course want to avoid these subjects because my mind does a crazy squirrel dance around these things all. day. long. I think about almost nothing else, and none of it is under my control, which leads me into a crazy stress spiral.
Instead I would like to talk about
1. Occupy Maine. I spent a little time down there on Monday (was it Monday? I have zero sense of time/day/time of day right now). I'm excited about the movement, while simultaneously leery of the effectiveness of demonstrations. They were still getting organized on Monday, and seem to have made some progress, but I still feel burned by the lack of effectiveness of the GLOBAL demonstrations against the war in Iraq in 2001-2002.
And also, because of the nature of the demonstration ("occupation"), most of the people occupying are college-age people, because many people, myself included, have families, obligations, and/or chronic illnesses to care for. I'll spend some time there this weekend, I think... maybe I can convince them that being shunted off into a park is less effective than, say, occupying One City Center, where the Portland branch of Bank of America has its headquarters.
But I digress. I hope that this is a sign of real changes to come, but I'm an old, jaded activist these days.
2. Caramel Apple Dip:
Why is there even "apple" in the title? You/I know you/I just eat it with a spoon.
3. Amanda Palmer
I'm pretty much always willing to talk about Amanda Palmer. Seriously, any time.
4. Hanson Flash Mob:
I'm going. Are you? I spent some time flailing around in front of a youtube tutorial today. I'll probably do some more of that tomorrow.
*these are not mine because thank goddess I do not have cartoon intestines, but they look like this. Except not cartoon. I'm a 3.
**Just. Why?
I made a list tonight with my bro (not a relative, my bromance bro) of things that I don't want to talk about tonight and they include:
1. My atrophied intestines*
2. My ex-fiancee and the circumstances surrounding the end of our relationship
3. Celiac disease
4. Facial tattoos**
5. Money
6. Disability insurance
7. Medical records
8. Nonpayment of child support
I of course want to avoid these subjects because my mind does a crazy squirrel dance around these things all. day. long. I think about almost nothing else, and none of it is under my control, which leads me into a crazy stress spiral.
 |
| This is my brain. |
Instead I would like to talk about
1. Occupy Maine. I spent a little time down there on Monday (was it Monday? I have zero sense of time/day/time of day right now). I'm excited about the movement, while simultaneously leery of the effectiveness of demonstrations. They were still getting organized on Monday, and seem to have made some progress, but I still feel burned by the lack of effectiveness of the GLOBAL demonstrations against the war in Iraq in 2001-2002.
And also, because of the nature of the demonstration ("occupation"), most of the people occupying are college-age people, because many people, myself included, have families, obligations, and/or chronic illnesses to care for. I'll spend some time there this weekend, I think... maybe I can convince them that being shunted off into a park is less effective than, say, occupying One City Center, where the Portland branch of Bank of America has its headquarters.
But I digress. I hope that this is a sign of real changes to come, but I'm an old, jaded activist these days.
2. Caramel Apple Dip:
Why is there even "apple" in the title? You/I know you/I just eat it with a spoon.
3. Amanda Palmer
I'm pretty much always willing to talk about Amanda Palmer. Seriously, any time.
4. Hanson Flash Mob:
I'm going. Are you? I spent some time flailing around in front of a youtube tutorial today. I'll probably do some more of that tomorrow.
*these are not mine because thank goddess I do not have cartoon intestines, but they look like this. Except not cartoon. I'm a 3.
**Just. Why?
Wednesday, September 28, 2011
Broken Promises
So I promised that this wouldn't become a celiac blog... but it turns out that eliminating (ha ha, no pun intended) my disease leaves me with, well, not a lot to talk about.
So here's the scoop: I'm out on disability. I am extremely lucky to work at a place that offers short and long term disability coverage, so I still receive a portion of my salary while I sit here at home and do my best to get well. If that wasn't the case, I am sure that I would be soldiering along at my job until I ended up in the hospital, racking up big bills that would lead directly to my existence on the other side of the social services table.
Instead I work at a kind, humane place that genuinely cares about the well-being of its employees, and I am incredibly grateful for that. Thanks to them, and to labor unions, and insurance. You all are the bomb diggity.
This is the third day of my disability leave, and it has become very clear to me why I've been struggling so much the last few months. Every day (so far) I have been able to get up to see the kids off to school, do some housework, take some light exercise (usually a walk downtown--a mile in each direction), take a nap, and prepare dinner. I've also caught up on some of that unpleasant adult-type paperwork that we all have to do--calling insurance companies, paying bills, etc etc. You know, the stuff that people have to do every day.
I was not able to do any of this while I was working, even when I reduced my hours to 20 per week. I would work for four hours and collapse into bed for a nap equal to that time, only to rouse myself for a doctor's appointment or to prepare a half-assed meal for the kids (or left them to fend for themselves with the frozen/instant equivalent of a meal). A good portion of my farmshare went bad because I didn't have the energy to prepare fresh food; this led to its own problem, as my weight continued to plummet (118 lbs at current writing). The housework fell to the side and the apartment collected several cats' worth of dust-kitties...and let's not even speak of the bathroom or the inside of the microwave. Twice my long-distance partner came to do a deep-clean of the apartment, which was awesome, and lasted for about a week. Collection agencies started to call because I hadn't sent out the insurance information for medical procedures performed months ago. My teen (and the teen that is staying with us briefly) were acting out, a result, I'm sure, of the lack of attention I was giving them. I was depressed, feeling like I couldn't manage my life and that it was quickly spiraling out of control.
Not working has made this condundrum so much clearer. Here is a metaphor that I got from somewhere (post in the comments if I stole it from you, please, because it's a good one and it deserves attribution):
Imagine that everyone is given a certain amount of energy chips to get through the day. Every thing you have to do uses one of those chips: prepare a meal, spend a chip. Go to an appointment, spend a chip. An hour at work, a chip. Because my body is so malnourished and debilitated, I have fewer chips than the average person, and so I used them up faster. When I pushed myself to do more, I was borrowing chips from the next day (when I worked three 6 hour days in a row, for example, I had to spend the fourth day entirely in bed).
Now that I am not using up all my chips at work, I am able to not only accomplish things that I have to do in order to live, I have some chips left over to do some things that include healing myself so that I can get back to full energy--like some gentle yoga, learning to cook gluten and dairy free, and healing some of my relationships, and myself.
I am also learning to pace myself, as the most challenging part of this illness is the tsunami of exhaustion that would roll over me seemingly without warning--when my energy chips were gone. I'm learning the limits of what I can do, and to notice when there are tsunami warning signs.
I'm hopeful that a couple of months will be enough to restore me to good health. If it's not, I"ll ask for a couple more. I need to gain about 20 lbs and restore my low vitamin levels. I need to be able to have enough recipes under my belt (haha) to cook healthy gluten free meals every day without having to think too hard about it. I need to learn how to pace my workday, my appointments, my obligations, so that I don't drown.
I also need to find a way to incorporate art into my everyday life, because this gives me energy. Writing here is part of that, and so is cooking. I've been exploring some visual art as well, which is something that I haven't done in some time, but that I enjoyed very much.
I'll keep you posted, literally, on how this is going. If you're not so into hearing about my process, I don't mind. Check out for a while and check back in at the end of November and see how things are going. I'll be right here.
So here's the scoop: I'm out on disability. I am extremely lucky to work at a place that offers short and long term disability coverage, so I still receive a portion of my salary while I sit here at home and do my best to get well. If that wasn't the case, I am sure that I would be soldiering along at my job until I ended up in the hospital, racking up big bills that would lead directly to my existence on the other side of the social services table.
Instead I work at a kind, humane place that genuinely cares about the well-being of its employees, and I am incredibly grateful for that. Thanks to them, and to labor unions, and insurance. You all are the bomb diggity.
This is the third day of my disability leave, and it has become very clear to me why I've been struggling so much the last few months. Every day (so far) I have been able to get up to see the kids off to school, do some housework, take some light exercise (usually a walk downtown--a mile in each direction), take a nap, and prepare dinner. I've also caught up on some of that unpleasant adult-type paperwork that we all have to do--calling insurance companies, paying bills, etc etc. You know, the stuff that people have to do every day.
I was not able to do any of this while I was working, even when I reduced my hours to 20 per week. I would work for four hours and collapse into bed for a nap equal to that time, only to rouse myself for a doctor's appointment or to prepare a half-assed meal for the kids (or left them to fend for themselves with the frozen/instant equivalent of a meal). A good portion of my farmshare went bad because I didn't have the energy to prepare fresh food; this led to its own problem, as my weight continued to plummet (118 lbs at current writing). The housework fell to the side and the apartment collected several cats' worth of dust-kitties...and let's not even speak of the bathroom or the inside of the microwave. Twice my long-distance partner came to do a deep-clean of the apartment, which was awesome, and lasted for about a week. Collection agencies started to call because I hadn't sent out the insurance information for medical procedures performed months ago. My teen (and the teen that is staying with us briefly) were acting out, a result, I'm sure, of the lack of attention I was giving them. I was depressed, feeling like I couldn't manage my life and that it was quickly spiraling out of control.
Not working has made this condundrum so much clearer. Here is a metaphor that I got from somewhere (post in the comments if I stole it from you, please, because it's a good one and it deserves attribution):
Imagine that everyone is given a certain amount of energy chips to get through the day. Every thing you have to do uses one of those chips: prepare a meal, spend a chip. Go to an appointment, spend a chip. An hour at work, a chip. Because my body is so malnourished and debilitated, I have fewer chips than the average person, and so I used them up faster. When I pushed myself to do more, I was borrowing chips from the next day (when I worked three 6 hour days in a row, for example, I had to spend the fourth day entirely in bed).
Now that I am not using up all my chips at work, I am able to not only accomplish things that I have to do in order to live, I have some chips left over to do some things that include healing myself so that I can get back to full energy--like some gentle yoga, learning to cook gluten and dairy free, and healing some of my relationships, and myself.
I am also learning to pace myself, as the most challenging part of this illness is the tsunami of exhaustion that would roll over me seemingly without warning--when my energy chips were gone. I'm learning the limits of what I can do, and to notice when there are tsunami warning signs.
I'm hopeful that a couple of months will be enough to restore me to good health. If it's not, I"ll ask for a couple more. I need to gain about 20 lbs and restore my low vitamin levels. I need to be able to have enough recipes under my belt (haha) to cook healthy gluten free meals every day without having to think too hard about it. I need to learn how to pace my workday, my appointments, my obligations, so that I don't drown.
I also need to find a way to incorporate art into my everyday life, because this gives me energy. Writing here is part of that, and so is cooking. I've been exploring some visual art as well, which is something that I haven't done in some time, but that I enjoyed very much.
I'll keep you posted, literally, on how this is going. If you're not so into hearing about my process, I don't mind. Check out for a while and check back in at the end of November and see how things are going. I'll be right here.
Sunday, July 24, 2011
This sickness doth infect the very life-blood of our enterprise
I'm sick. This is going to be one of those personal self-disclosing medical blog things, so if you don't like those, you can go look at this instead. Really, I don't mind.
The last few years haven't been good ones for me, medically. I've had three surgeries in two years related to my endometriosis, and for longer than I can remember I've thought there was something wrong with my immune system--something that came and went. But it went often enough that I could sort of ignore it, and so I went with that.
Then, around Christmas-time this year, people started asking me if I was losing weight. I was pleased. I'd put on some weight at the desk job I had before this one (2008-2010), and was at the heavier end of my regular weight spectrum. And I didn't think much more of it. I figured my body was leveling itself off: I had had major surgery in September 2010, and I guessed it could be related to that, somehow.
Until... (and there's always an until in medical stories, right?) I noticed that some glands were swollen on the right side of my neck all the time. And my weight kept sliding down, more and more quickly. I got thrush. I was exhausted all the time. The doctor kept testing me for scarier and scarier things. I got poked, prodded, CT scanned, X-Rayed, and had enough blood drawn to feed a healthy-sized vampire. Nothing showed up. Nothing. And I wasn't feeling better. I started to relate to the people on MYSTERY DIAGNOSIS, which is never a good thing.
I was shrinking out of my clothes, but the doctor seemed pretty sure that it was just stress, and it seemed plausible, because I've certainly had my share of that in the last 12 months.
So we tried a psychotropic med change, which is its own special kind of fun. Ha. That helped my mood a bit, but not the appetite or the weight.
Then, in June, after sounding out my theories with my massage therapist and a couple of friends, I brought them to my doctor.
1. The estrogen prescribed to me wasn't working somehow, or the weight loss was a side effect.
2. Stress. Possible, although I'd never experienced this particular side effect of stress. Usually I eat a lot when I'm stressed. But I am open to the effect that emotions and mental health can have on the body.
3. Gluten. I can hear the collective eye-rolling. I have done some of that myself, which is why I never suggested it to my doc before. Gluten is the new darling of the health-food nuts. People want to connect it to everything from weight loss to autism. But several people said that they had friends who gained weight on a gluten-free diet, because the gluten was affecting how they absorbed nutrients. So I asked my doc, and she gave me the blood test.
And guess what? My blood tests were literally off the charts: Celiac disease. Which explains a lot about the weight loss and fatigue (I've been literally starving), the immune problems, the bruising, the swollen glands.
I've been on a gluten-free diet since July 5, and I haven't gained any weight yet, but I'm hoping that it will help. I still have some procedures to be performed (hello, invasive camera down my throat!). The fatigue was a LOT better for the first week and has come back, and I'm still learning how to eat in a brand new way. This causes me no small amount of anxiety, because my celiac symptoms are atypical--I don't get the GI symptoms that many people experience, so I don't have any way of knowing if I'm accidentally eating gluten and further damaging my insides. This is terrifying.
I'm also in a bit of mourning for the things I can't have, although there are now (expensive) gluten-free alternatives for most foods. But I'll probably not ever be able to leave my house expecting that I can just pick something up on the way someplace. I'll have to bring my own food to family meals (gluten AND dairy free is a lot to ask of someone cooking a big holiday meal). It's not the end of the world, but there's a definite sadness around eating right now.
I promise that this won't become a celiac blog. There are plenty of those. But I may, from time to time, update my health condition here. Mostly I don't think about it, except at meal times. I like the challenge of learning new ways to cook and eat, and I feel blessed that this is happening at the height of fresh food season, so I can gorge on fresh fruits and vegetables without completely breaking the bank while getting all the calories I need.
Also, big shout-outs to some gf friends who have guided me through this tough time. You know who you are. If you want to be known, post your links in the comments. :)
 |
| October 2009 (slightly over baseline: 155) |
Then, around Christmas-time this year, people started asking me if I was losing weight. I was pleased. I'd put on some weight at the desk job I had before this one (2008-2010), and was at the heavier end of my regular weight spectrum. And I didn't think much more of it. I figured my body was leveling itself off: I had had major surgery in September 2010, and I guessed it could be related to that, somehow.
 |
| July 2010 (About average: 145) |
Until... (and there's always an until in medical stories, right?) I noticed that some glands were swollen on the right side of my neck all the time. And my weight kept sliding down, more and more quickly. I got thrush. I was exhausted all the time. The doctor kept testing me for scarier and scarier things. I got poked, prodded, CT scanned, X-Rayed, and had enough blood drawn to feed a healthy-sized vampire. Nothing showed up. Nothing. And I wasn't feeling better. I started to relate to the people on MYSTERY DIAGNOSIS, which is never a good thing.
 |
| April 2011 (130 lbs) |
I was shrinking out of my clothes, but the doctor seemed pretty sure that it was just stress, and it seemed plausible, because I've certainly had my share of that in the last 12 months.
So we tried a psychotropic med change, which is its own special kind of fun. Ha. That helped my mood a bit, but not the appetite or the weight.
Then, in June, after sounding out my theories with my massage therapist and a couple of friends, I brought them to my doctor.
1. The estrogen prescribed to me wasn't working somehow, or the weight loss was a side effect.
2. Stress. Possible, although I'd never experienced this particular side effect of stress. Usually I eat a lot when I'm stressed. But I am open to the effect that emotions and mental health can have on the body.
3. Gluten. I can hear the collective eye-rolling. I have done some of that myself, which is why I never suggested it to my doc before. Gluten is the new darling of the health-food nuts. People want to connect it to everything from weight loss to autism. But several people said that they had friends who gained weight on a gluten-free diet, because the gluten was affecting how they absorbed nutrients. So I asked my doc, and she gave me the blood test.
 |
| June 2011 (125 lbs) |
I've been on a gluten-free diet since July 5, and I haven't gained any weight yet, but I'm hoping that it will help. I still have some procedures to be performed (hello, invasive camera down my throat!). The fatigue was a LOT better for the first week and has come back, and I'm still learning how to eat in a brand new way. This causes me no small amount of anxiety, because my celiac symptoms are atypical--I don't get the GI symptoms that many people experience, so I don't have any way of knowing if I'm accidentally eating gluten and further damaging my insides. This is terrifying.
I'm also in a bit of mourning for the things I can't have, although there are now (expensive) gluten-free alternatives for most foods. But I'll probably not ever be able to leave my house expecting that I can just pick something up on the way someplace. I'll have to bring my own food to family meals (gluten AND dairy free is a lot to ask of someone cooking a big holiday meal). It's not the end of the world, but there's a definite sadness around eating right now.
I promise that this won't become a celiac blog. There are plenty of those. But I may, from time to time, update my health condition here. Mostly I don't think about it, except at meal times. I like the challenge of learning new ways to cook and eat, and I feel blessed that this is happening at the height of fresh food season, so I can gorge on fresh fruits and vegetables without completely breaking the bank while getting all the calories I need.
Also, big shout-outs to some gf friends who have guided me through this tough time. You know who you are. If you want to be known, post your links in the comments. :)
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