Thank you, Lupron

I am now about five pounds away from an overweight BMI! Oh, how things have changed.

Ever since I had my tonsils out at age six, I have been extremely picky. The shitty thing is it's not just a matter of "not liking" something -- it's a matter of involuntary gagging and heaving. And my appetite, for as long as I can remember, was inordinately small. I could eat maybe a quarter of a modest-sized meal before I was at the point where I actually could not swallow any more food, because I would start gagging once it hit my throat.

My neurologist indicated in my records that I was visibly undernourished. At the time, I was 5'8", around 115 pounds. That's a BMI of 17.5, or 1.0 past the cutoff for "underweight." And a bra size of 34notevenA. (Different brands call it different things, but the one constant is that the bra would be a bit too big for me.)

(I hated my weight, for the record. My shoulder blades hurt anytime they were pressed up against anything, even a soft bed. My hips and pelvis cried out in pain from grating up against a hard plastic chair (i.e. 2/3 of every weekday ever) or even just against a fitting pair of jeans. I always felt like my bones were ready to snap at any moment. Weak, fragile.)

Right before new year 2005 I got on the Lyrica, which has a side effect of weight gain/increased appetite. I saw both. Yay! Within six or ten months I saw my body become more and more padded. It settled down around 150. BMI 22.8. Recently re-fitted for a bra (I was still wearing my stretched-out 34As) at 36C. Took some adjusting, certainly. I had always had a bit of a roll on my upper tummy, even when I didn't have much of any fat there at all. That remains. My legs are nice and firm and muscle-y now, since I started working at a place that requires me to be standing or walking all day, but besides that I am basically composed of significantly less muscle mass than a "normal" woman, and make up for that with a bit more fatty tissue. It's how I've been whether I'm completely sedentary or whether I am active and regularly exercising.

The first of these two pictures were me around my high school graduation in 2004. The last is me as of this month (taken to earn discounts off Threadless shirts. Whee!). There's a significant difference.

I've grown to be mostly happy with my body. The fact that I have extra tummy fat -- or just that my breasts are fairly small proportionately, which has the effect of making my tummy seem bigger in my mind -- is really the only thing that gets to me sometimes; besides that, for the most part, I'm certainly comfortable walking around nekkid all day, and I can admire even the unconventional things -- like the multiple scars on my back and my side, my silly slightly-crooked nose (the Hungarian in me) and my wide, full hips and butt. I like those.

Those are fuller now, though; I weighed in at 158 at the doctor's office yesterday, and I am sure over the course of this six-month treatment I will see a little bit more gain (it is only just today one full month since my first shot).

I should get used to this, right? Of course, people only gain, bit by bit, as they get older -- and it's usually better for them to do so, in terms of health and mortality. And I do plan on going through pregnancy at least once in my life. And for as much fucking medication I'm on, I can't expect not to see some weight gain. Really, which would I rather have: another five pounds around the hips and tummy?, or debilitating neuralgia, crushing anxiety, or endometrial implants growing and spreading and scarring up my insides, creating an awful amount of pain and frustration?

And culturally, which do women often choose? Not every time, but enough times that clinical trials do often see patients dropping out early for the side effects, the most common of which in medication for women is weight gain.

This is a lot for me to get used to. Really, four years later, I still have an image of myself as the skinny minny. I still expect people to recoil when they hug me because they're afraid they'll hurt me if they squeeze too hard, and remark with a concerned tone on how little I am. I still think of my breasts as exceptionally small, rather than absolutely average -- and when I think of it that way, I think that they can't be counted that way because I have more than enough tummy to make up for it. I still expect to be able to fit into Mediums and Smalls on the dress rack...

I know I am measuring against a fictional standard. But God it's just all over, and I can't escape it. It's woven down around every thread of thought that has anything, anything at all to do with outward appearance, even in the most indirect way. And I know that even if I can somehow purge myself of it, clear my own head, it's still permeated throughout our culture in an even worse way. I can't escape it -- I can never escape it.

I try, little bit by little bit, to be positive about my body around other people, and to be positive to them about their bodies, and to remind them that it's better to live a happy, healthy life in the body you've got than to stomp all over your health and happiness to change your body. But that doesn't mean I, myself, am unafflicted, unconflicted on the matter.

I was hesitant to include this next picture with those above, because it doesn't just show me as "average" -- I immediately see that spare tire below the breasts, how it pops out over the top of my jeans so obviously, how plump my thighs are juxtaposed with those skinny little toothpick calves and arms.


But you know what? I shouldn't be tearing myself down over these things. I shouldn't.

This post was originally going to be just that first line.

I'm trying to make sense of all this. I guess none of us ever fully do, do we?

So you know those back spasms I've (still) been having dozens of times daily? (Dozens of times hourly, often enough.) And those couple times I only barely avoided fainting, along with severe dizziness when I don't go painfully slow in getting myself up from a resting position?

Yeah, my gynecologist doesn't think they're related to the Lupron (even though I've never gone through anything like the former, and the both of them started a few days after my first shot and haven't abated since). I'm to see my PCP to try and figure out WTF is going on with my body.

Sigh.

Marital Rating Scale

My scores are my own estimates, based on how I would be perceived by others.

DEMERITS

1. Slow in coming to bed -- delays til husband is almost asleep.*
   
   Well, effectively, I suppose: I have more to do to prepare for sleep (remove contacts, gather medicine to take before bed, set up medicine and drink for morning taking, use bathroom, etc.) and he falls asleep in about as much time as a commercial break takes -- whereas I take an hour or so. This is actually a source of disappointment for me, because I love to fall asleep with him; I grow lonely when he's already snoozing and I can't keep from tossing about in pain. My score: -1.
   
   * The subtext here varies. The woman may be delaying so as to avoid being subject to sex at the end of her day. But then, she may have plenty more to do than her husband does (such as Merit #7!) or is even aware of -- setting out clothing for the children, finishing up the dishes, tidying up loose toys and such. A housewife's job is never done, and if she were to neglect these things to be in bed in a timely fashion (that is, at her husband's whim), she would surely see a demerit for it.
   
   
2. Doesn't like children. (5)*
   
   I could see being interpreted as not liking children, myself; I'm not really very good with other people's children (and I have none of my own, yet). A huge part of that in my past is simply my social anxiety. But when it comes to children I know, I'm just fine, and I know I will be with my own. And that's no different than many other women. My score: 0.
   
   * Whoo boy! I'm surprised this isn't an instant disqualification. Besides, it's no wonder a woman wouldn't like children in such times; she carries the entire responsibility for another sentient being, over whom she will not be able to exert absolute control no matter what she does -- who wants to be on the line like that?
   
   
3. Fails to sew on buttons or darn socks regularly.*
   
   Well, shoot! Regularly? Matt asked me the other day if I could fix a hole in his jacket pocket, and I told him that basically, I can sew a straight line for a couple inches, and that's about it. And it won't be pretty either, so it's a good thing it's inside a pocket! Buttons are the easiest thing in the world, tho'. My score: 0.
   
   * I suppose the deconstruction here is quite easy; she needs to keep herself busy with womanly things, making sure that no sign of humanity is ever to be seen on her husband or children -- it would reflect poorly on her. So soon as one stitch comes loose, it is to be mended.
   
   
4. Wears soiled or ragged dresses and aprons around the house.*
   
   He's lucky if I wear anything around the house. When I do, it's usually a comfortable chemise, which protects my sensitive breasts from any light contact (which is excruciating to me), hides the "naughty" bits, allows freedom of movement, and doesn't restrict my sore shoulders or hips. Pants come off immediately when I arrive home; they're too painful to keep on. But this is simply inappropriate around children, so I'm sure I wouldn't score so well. My score: -1.
   
   * Consider everything a woman was required to do in her day, while at the same time remaining perky and pretty. For whose benefit? The words "effortless perfection" comes to mind.
   
   
5. Wears red nail polish.*
   
   Or any nail polish at all. I keep my nails short, a habit held over from my violinning days. That alone probably suffices, though. My score: -1.
   
   * Tart! Jezebel! Wicked woman! Too subversive. And hey, if she is to remain perfectly decorative every minute of every day, who says she can have her own fun with it?
   
   
6. Often late for appointments. (5)*
   
   HA! I try to leave myself a buffer of time before any "appointment" and still often arrive barely-on-time or outright late. It comes with the fibromyalgic territory, unfortunately. My score: -5.
   
   * Again, consider everything the woman has to do in her day. Is this appointment, say, church? She had to prepare every screaming, writhing child to be presentable in public in their Sunday Best and then prepare herself! But she best not inconvenience anyone, after all.
   
   
7. Seams in hose often crooked.*
   
   Hose at all? I don't wear them, except as an extra layer to keep myself warm in the winter (and not entirely willingly -- the things are a pain through and through). But I know, culturally, wearing tights is a habit fast fading, so I'm not exactly being subversive here. But there are plenty of other fashionable faux paus' to be had for the modern women: I've given up on hiding my bra straps in a tank top, even though it's coded "trashy." My score: -1.
   
   * Must appear neat and put-together at all times. Have you, the reader, especially if you are male, ever tried to wear a pair of pantyhose? Getting them on, much less with straight seams, is a quarter-hour struggle. And once they're on, there is no simple re-straightening of the seams; you have to start all over again. Some time, when no one is at home and you know you have an hour to yourself, try to put on a pair of your own, if you never have before. You will have a new appreciation for the demands women faced every day.
   
   
8. Goes to bed with curlers on her hair or much face cream.*
   
   Or goes to bed with the bed hair she woke up with that morning! I don't often fret with these things. My score: 0.
   
   * And yet she was to have beautiful curly hair and perfectly smooth and radiant skin when she awoke the next morning. Effortless...
   
   
9. Puts her cold feet on husband at night to warm them.*
   
   I laughed at this. I've done it. More recently, I've tried to warm his cold feet and been turned away, lol. My score: -1.
   
   * Shades of "frigid," anyone? This shows a lack of consideration for her husband's comfort, and also draws his attention to her comfort, which is simply unacceptable. Suffer in silence, dear.
   
   
10. Is a back seat driver.*
    
    Only slightly, although my husband might disagree. My score: 0.
    
    * Who wants to take orders from a woman? And how presumptuous of her to claim to know what is best for a man. Women should be seen, but not heard.
    
    
11. Flirts with other men at parties or in restaurants. (5)*
    
    I'm a happy, mildly social person, which under current contexts might render me "flirtatious." But I think most people would see things more fairly. And besides, how often am I ever at parties or restaurants? My score: 0.
    
    * Insouciant! Infidelity is one of the endless deadly sins for a woman in such a time. Of course, flirting may simply be a smile or a thank you, or engagement in light but fun conversation, or appearing to enjoy herself with any male person within a short distance. But, of course, a lack of these things would be a sign of a cold and inconsiderate woman, who doesn't know her place. Damned if you do, damned if you don't.
    
    
12. Is suspicious and jealous. (5)*
    
    Not so much, to my eyes anyhow. Then again, we both spend every spare minute together, so we both know most of everything the other does, which could count. My score: 0.
    
    * Again, she fails to realize her place. Who gave her the right to question her husband's actions? Doesn't she have enough to tend to without sticking her nebby nose into his affairs? His business is his alone; she has no right to it, to even know of it. But (see Merit #9) her business is subject to his notice and review, every detail, at all times.
    

TOTAL DEMERITS: -10.


MERITS

1. A good hostess -- even to unexpected guests.*
   
   Hardly! Every moment of interaction with outside persons is planned. Every time I step foot outside my home, it is planned for far in advance. Double so for a person coming into my home. It simply requires far too much preparation. I would never be able to be ready at a moment's notice for anything at all. My score: 0.
   
   * No moment to herself, always open to intrusion (which, of course, isn't considered intrusion -- she is effectively public property), always pretty, always happy, her home always neat and tidy, her children always pleasant and behaving, a warm meal always ready on the stove. She has no time available to stop being what everyone else needs her to be, and just be.
   
   
2. Has meals on time.*
   
   I don't even cook the meals around here. My score: 0.
   
   * There ought be no inconvenience to the man of the house; not only need he not be the one to prepare his meal, he need not even be aware of any preparation whatsoever. If there is any wait, he has been wronged.
   
   
3. Can carry on an interesting conversation.*
   
   Depends on who it is I'm talking to. But for the most part, yes. My score: 1.
   
   * Keep in mind this conversation shouldn't be too interesting; can't intimidate a man with any sign of intellect. Best to keep to safe topics of conversation, like children and weather and beauty (but without turning to gossip) and stay out of anything "serious" -- which is of course only things that concern men.
   
   
4. Can play a musical instrument, as piano, violin, etc.*
   
   I played violin for eight years and sat first chair until my disability began to catch up with me, at which time I quit. I could probably play on the level of a second-year violin student if I were to pick up and try right now. My violin is a treasured item, though; I'm still trying to figure out how to "display" it without seeming weird. My score: 1.
   
   * Of course, now, in addition to childrearing, housecleaning, meal preparation, and other such necessities, she need be ready at any moment to perform entertainment for others. At least this is something she could draw some enjoyment out of -- but of course, were she to wish to study an instrument and actually do something with her skill, she would likely be rebuffed and reminded of her place.
   
   
5. Dresses for breakfast.*
   
   I know that this means "dresses for the day before breakfast," but I'm going to take it literally, in which case: No. I have sat at the kitchen table to eat breakfast with my -- clothed -- husband, myself entirely disrobed. And it's not really the exception to the rule. My score: 0.
   
   * Again: must remain pretty and decorative every moment of every day. Don't subject the family to her messy hair, baggy eyes and droopy tired face -- why would they want to see such a thing?
   
   
6. Neat housekeeper -- tidy and clean.*
   
   Hardly. Again, I work half the time my husband does, and he still does at least half the housework. And the place looks it, too. My score: 0.
   
   * Be available at all hours to clean up after husband and children who can't be bothered to do it their own selves; allow no disarray. If you've never tried this, it is an exhausting job. Not to mention matters of simple entropy: dust collecting on the furniture and so on.
   
   
7. Personally puts children to bed.*
   
   My "children" know when it's bedtime, and they put themselves to "bed": Mitsy on top of my nightstand, and Buddy in the cubby hole on the bottom of it. :) My score: 0.
   
   * This is a nice touch for the children, but it's also a difficult job. It's also telling that the father is nowhere to be seen here. Can't be bothered, after all; there are more important matters to tend to.
   
   
8. Never goes to bed angry, always makes up first. (5)*
   
   I try not to go forward angry, bedtime or not: if something is wrong, I want to talk it through, so that we can understand each other better, and hopefully see resolution. But that doesn't mean I haven't had those nights myself. I do think, though, we are very good in handling any issues that come up between us. But because of what I feel this really means -- below -- I can't really give myself a positive score. My score: 0.
   
   * There are two interpretations of the latter half of that sentence: always makes up before going to bed -- or always makes up before her husband does. And honestly, the latter is probably the more accurate. The woman is expected to humbly submit to the husband, admitting her wrong, and accepting any berating to follow. Even if the husband realizes he was wrong in fact, he cannot admit as much, because it would be emasculating to cede ground to a woman. And besides, her anger is a nuisance; the more quickly she lets it go (read: buries it inside), the better.
   
   
9. Asks husband's opinions regarding important decisions and purchases.*
   
   We both do. It works for us. My score: 1.
   
   * Of course, the husband is the primary decisionmaker in the family, so to neglect to seek his counsel on a matter is to deliberately flout his authority. It's not so much a matter of trust as it is a matter of (perceived intended) insult to his rule.
   
   
10. Good sense of humor -- jolly and gay.*
    
    I do tend to be a pretty happy person; as I've said in the past, you know I am not doing well when I am in public and not smiling. This is for any number of reasons, large part of which is just my personality, but not therefore free of influence from family and society. My score: 1.
    
    * Wouldn't want to remind anyone of her humanity, after all. The woman is an object, her personhood disregarded. No matter how her day as gone, how others have treated her, what may have gone wrong, how large a burden she carries on her (slender and smooth) shoulders, she is to appear bright and pleasant. She cannot serve as a distraction. Besides, her matters are not of importance when compared to anyone else's -- it's simple insubordination to presume otherwise. As such, they are to be kept inside, so that no one can even know they exist.
    
    
11. Religious -- sends children to church or Sunday school and goes herself.*
    
    I am a religious person, but my efforts at finding a church here in my new home have been nil. Do you really think I'd be able to force myself up every Sunday morning with children? My score: 0.
    
    * Notice the father's absence here. Of course, the appearance must be maintained at the church that the family comes as a family, with the father's guidance -- but in reality, the responsibility for getting there lies with the wife. And in reality, the responsibility for maintaining that holy image lies, again, with the wife: she must be perfect herself, of course, but her children must also be -- if they are not, it is a reflection on her mothering -- and her husband must also be -- if he is not, it is because she is not pretty enough, gay enough, sexy enough, submissive enough, perfect enough. Spirituality is an incredibly gendered topic, much moreso than many realize.
    
    
12. Lets husband sleep late on Sundays and holidays.*
    
    Oh hell. He wakes me up early on weekends! (That is, before 10-11AM.) My score: 1.
    
    * Wait a second, aren't they supposed to be at church? And isn't there supposed to be hot breakfast ready the moment he wakes, and isn't she supposed to be dressed and made up for the day when he does? And shouldn't the children also be awake and readied to eat with him, as a family -- but without making enough noise to wake him early? And...
    

TOTAL MERITS: 5.

So my score so far is ... 5. Which puts me under "Very Poor (Failures)."

Sorry, honey.

via

ETA: Go see the entire list over at taryn's. My ending score is a +2. Impressive!

May Twelfth

kaweah river valley

One year ago today, holding hands at the far end of a covered deck over the roaring Kaweah River, my husband and I were married.

This has been my freedom. This has been my life.

He and I became fast friends when I was sixteen and he, eighteen. A year and change later, we admitted what was inescapable: we were stuck with each other. Love will do that to you.

He grew up south of Pittsburgh, in a family home in Castle Shannon, playing in the woods with his two younger brothers. I was raised between Tulare and Visalia, my mother's youngest child -- my siblings were old enough to have begun having children before I was so much as conceived -- bouncing between rental homes until a settlement allowed my mother to buy a run-down home as I was entering high school.

We met online well before it became acceptable to meet online. The internet allowed me a social outlet as a young teen with yet-to-be-understood disabilities, allowed me to grow an identity under the roof of a controlling single parent. And, to the contrary of the current conventional wisdom, interacting with the invisible people in my computer pushed me to develop social skills, which allowed me to fall into an awesome group of friends as I hit adolescence.

It came to a point where we talked every spare moment of every day. And it hasn't changed since.

To this day I'm not sure what drew him to me. Looking back, I see a confused child living with severe depression and toxic levels of self-loathing. But when I look forward and see a young woman fighting to break out from under the influence of fear and abuse, I see this quiet, steady young man standing next to her, coaxing her to come out into the light, step by small step. And I see that same young man realizing a greater confidence with the knowledge of his partner's trust and love.

The both of us have changed so, so much in this time. But as we have grown, we have grown together. We are not compatible in a simple sense of shared interests; we are compatible in our mutual adaptivity: teaching, learning, understanding, growing, and deepening our sense of self only helps our love, trust, affection, and understanding of one another do the same.

This has been my freedom -- this has been my life.

We have come so far together, and I hope we will go so much farther.

I love you, Matthew. I hope this year is only our first of many.

Things I learned yesterday.

• A man coming on to a woman is one thing. A man who holds a copy of the keys to the woman's apartment coming on to her, however, adds a whole 'nother level of scary to the equation.
  
  What disturbs me the most is that when my husband related that his coworker -- who also lives in our apartment complex -- has also had a history of harassment from the landlord, I felt relieved. WTF? The reasoning, I think, is that if he's done it to someone else and they were never physically assaulted, that means I don't have to worry too much about it either. But I know even that is iffy. And either way, I shouldn't be happy that someone else has gone through the same thing. Blech.
  


• When we got on the trolley/subway/train ("the T") last night, all the seats were taken -- we weren't the only ones heading to the Penguins game. I am loathe to ask people for any sort of assistance when I'm out in public, because it opens me up to questioning that I don't particularly want to deal with. So I figured, you know, it's just a quarter hour worth of standing, it won't be pleasant but I should be able to manage.
  
  Little did I know that it's not just being upright on one's own two feet: it's holding on to the rail (holding my arms in any unnatural position for too long is painful) and keeping one's feet planted on the ground. Every time the train stopped, started, lurched, turned, or hit a bump, it meant a serious effort to stay upright and not go crashing into some other poor passenger nearby. And it was seriously hard on me, particularly that one arm, and all up and down the backs of my legs.
  
  The suckiest part is that I then had to walk uphill about a mile to the arena, and then try to maintain my balance on a wet cement "bench" while trying to get a decent view through the people and trees in front of me. I emptied a small handful of pain killers into my bag before we left, and there were only two halves left by the time I got home. And I woke up with an awful headache this morning, that I'm still trying to fight off.


• Gas is expensive...
  
  
  ... no, seriously:
  
  
  
  This same station has before advertised their gas at $2.09 when the prevailing price was just a few cents above three dollars: they were obviously going for $2.99. That was the most tightly-packed gas station I've ever seen -- and I lived in California my first twenty years.
  


• I had a bit of a realization on the way home last night. Stress and pain are irrevocably intertwined, we know. I've never been able to pinpoint a recognizable pattern of correlation in my own life, though. Until I paid attention to how I reacted to point no. one above: I pretty much fell into a slump, blank and depressed emotionally, slow and devoid of any energy physically. This is very common for me as a reaction to any stressor.
  
  And now that I think of it, I know I've read on adrenal fatigue (?) -- essentially, in chronic pain patients, the body compensates for the effect of the "extra" pain with adrenaline, but after overproducing for too long, the system becomes fatigued -- and when traditional "fight-or-flight" situations are encountered, the body just sort of shuts down. Whatever the merits of the condition itself*, that's certainly a fair description of what happens to me when I face very stressful situations -- I just shut down, not only emotionally but physically as well. It pretty much lasts as long as it takes for me to be able to clear the worry from my head.
  
  In fact, it's rather similar in function to a panic attack. What's different are the symptoms experienced.
  

*Ugh, I know I started the "alternative takedown" thing here, and I'm still not entirely happy with people who push scam treatments on people who are desparate or disillusioned enough to try anything. But I don't think scorn should be directed toward the people who are suffering with problems that their doctors can't (or won't) diagnose, for whom traditional means of treatment prove ineffective. These are people who are navigating the world they live in as best they can. If there is judgment to be given, a better focus would be the practitioners who push ineffective treatment on people for profit.

If you give a cat a bath...

I am an expert at bathing cats by now. I know many people laugh and joke about all the scratches and gashes a person will get away with by the time it's over, but I've never experienced it that way. Maybe it's because I grew up with no less than three cats at a time; I'm also an expert at catching a cat who is trying to run away. When your cats are the only non-parent family member you grow up living with, you learn these things.

But it still breaks my heart to do it. The way they yowl and how obviously terrified they are. Buddy actually tried to bite my husband yesterday as we were bathing him. (Pathetically -- he didn't really try to injure.) And how scared they are of you when all is said and done.

It made me want to cry, honestly. I don't know how the hell I'm going to handle children.

Rambling on disability and identity

I still don't fully identify with the word "disabled."

It's not the word itself. Certainly I am part of a class of people who have to approach life much differently than the rest of the world. People who don't fit into conventional means of living. Whichever label this group chooses, if any, will still describe the same thing.

... I guess it is the word, then. Because when I think of it that way, my membership in that class is quite clear. But when I think of it as "disabled," the doubt returns.

That is, I think, a result of the cultural attitudes toward disability. Disability strips a person of their personhood. They become less than. Pathetic and pitiful are the perfect words for this attitude. You feel sorry for the not-a-person in a human shell (another trope from this attitude) because they cannot participate in the activities that the culture deems necessary to personhood. You feel sorry for the not-a-person because you can't understand them very well, and that must mean that they have significantly diminished intellectual capabilities.

And most of all, you feel sorry for the not-a-person because they are so inescapably dependent. Especially in the American culture of individualism, people are reluctant to admit that they are dependent on anybody or anything to achieve their "success." Of course, we are all interdependent, whether we care to admit so or not. No middle- or upper-class person would enjoy the quality of life they do now if it were not for the unpaid work of the women in the families, and the uselessly low-wage work of the people -- mostly of color -- who put together their clothing, who tend and harvest and transport the fresh foods they eat, who keep clean the public places they frequent -- and so on. But the insular middle- or upper-class person will deny this, claiming to be a self-made (wo)man. At heart, they deeply fear the implications of acknowledging their own dependence. Their entire sense of self would deflate -- because that sense of self is built upon the person's imagined independence.

I traipsed through my early life blissfully, and willfully, deluded. The word "fibromyalgia" meant nothing to me. I was normal, I thought. Over time, though, I began to see ways in which the condition was affecting my everyday life. How flushed and lethargic I was after gym class, how my muscles twitched and trembled, how my teachers or friends in the next class would express concern about me when I stumbled in the door, slung my backpack beneath the desk and fell into the seat, resting my head in my arms on the desktop. Every day. I would notice that walking a longer distance across campus took a greater toll on me -- and began to purposefully schedule my classes close together. I would remember moments in my past, like how I never seemed to win the races we would run back in kindergarten, tho' I was pushing myself hard -- and how my teachers back then would comment on reports that I was bright and eager, but my coordination was lacking (to this day, I hold my pencil in such a way that strangers will stop and comment on how strange and different it is).

But I was still convinced that I was still normal -- just different. The fibro was something I carried with me -- it didn't crush me.

I recount all of this to provide context. Until my junior year of high school, my condition had no effect on my ability to live my life, I thought. It occupied a different space in my mind. I compartmentalized it away. It didn't exist in the same space as my everyday life. Even as I was quite clearly accommodating it -- modifying my schedule, carrying my tylenol bottle with me (fuck that ridiculous school policy), sitting down the entire lunch period even if my friends were all standing together a bit away from the bench we claimed as ours -- these things were invisible to me.

Of course, that all came crashing down in the following years. A serious pain flare-up in my last semester almost cost me graduation, and I went on to drop out of college -- twice -- because I couldn't handle the workload.

And after that first time, I learned. I went down to the Social Security office to begin my application for disability benefits. When I was planning my return to college, I availed myself of the Disabled Student Services office as early as possible. I forced myself, with great difficulty, to accept that I did need accommodation, and to talk with my professors beforehand to work out a plan. (For the most part, it boiled down to lenience on absences, which were sure to be many, and extended deadlines on projects if I needed them. I was fortunate to have professors this round who worked with me on that matter -- though I still ended up dropping half of my classes mid-semester.)

I was struggling to accept myself, to truly understand who I was. All along I had been under the impression that I was no different from anybody else. I had pain, yes, but it didn't make any difference in how I lived my life. Or whether. I kicked and screamed and cried out, because it wasn't fair. All these things I wanted to do! I had to accept that I couldn't do them. I couldn't take fifteen units and make it through the semester with passing grades. I tried modifying my schedule and adjusting my approach and twisting around whichever way I could to make it work, but eventually I was down to two classes and I couldn't even handle those and also handle my meals, laundry, showers... what did this mean? I didn't want to think about what it meant. It depressed the hell out of me. Everything I thought I was, I wasn't. Everything I'd ever dreamed of doing was being taken away from me.

What was I?

"Disabled." I used the word reluctantly. Following Social Security's definition, I certainly was disabled. Due to my condition, I was unable to work enough to earn substantial gainful activity. It was hard to deny that.

But the word didn't really make sense to me. It didn't fit. It didn't feel comfortable. Honestly, I felt dishonest using it.

There are at least two parts to that. First, I was, and am still, painfully aware of the fact that quite a lot of people are of the opinion that fibromyalgia is a condition of fakers, hypochondriacs, complainers, hysterical old women who make a life-threatening crisis out of every toothache and stubbed toe. The phrase "fibromyalgia is bullshit" is, I think, the first or second most common search that leads to this blog. A lot of this is still internalized. I know it for the bullshit it is now, but in years before, I was deeply afraid it might be true. I was raised to always know that everyone else knows better than I do, that my opinions were meaningless, that I was just a naive little young thing with no worldly experience so how could I know anything? So, I was always questioning myself.

Second, it felt appropriative. After all, I looked healthy. I had two working legs to carry my weight, two working arms to perform whichever task, and a working brain to process information. I wasn't obviously disabled, and so I must not actually be disabled.

Combining those two, I questioned myself: if I can sit here at my computer all day, reading and writing, why can't I sit at a desk in some office somewhere and stuff envelopes or push paper? (I know the answer: simply being "presentable" is a serious effort that drains me of strength, and being outside the home means little to no resources available for me to recover that strength, from having a comfortable chair to being able to slouch or lie in the chair or pull my legs up or stretch them out however I may need, to being able to take to the bedroom and rest whenever I feel I need to. And doing something that is required of me means stress, which especially affects my tense shoulders and neck, making migraines all the more probable.)

I must not be disabled, then. I'm just... well, I don't know.

I actively identify as disabled now. I know there's no better term to fit. I am working part time, but I am not guaranteed to be able to work part time continuing forward: much like how the poor are always teetering on the edge, and any one small thing that goes wrong means worrying about whether your heat will be shut off or whether you'll be outright evicted -- managing my pain is a difficult job, with plenty of opportunity to make mistakes, and if I don't build myself a healthy buffer, having one thing go wrong could mean descending into another serious flare that leaves me unable to work at all.

And I'm beginning to realize that "disabled" does not have to be tied to one's ability to work for pay. It can affect any of various areas in our lives, from personal care to our social lives to our recreation/leisure time. And to be honest, the focus on work-for-pay as a top defining aspect of self is an ableist construct itself.

But when I am out in the world, I am aware of what "disabled" means to anyone who is listening. And I have not quite kicked what of that I've internalized. When I call myself disabled, I see clearly what the people around me see: a healthy young woman, slim, standing upright with decent posture, dressed prettily, with her hair done, with no visible deformities, who speaks clearly and normatively, who uses no visible mobility aids, and who is not accompanied by any sort of personal assistant. No person would look at me and think "disabled" without being told so. And even those who are told so may doubt.

Not many express that doubt bluntly to my face. But I know what I've heard from people who don't know that I have a disability and who think I'm their ally by virtue of being ostensibly abled -- people who remark on others, disparaging them, making "fun," mocking them, not just for what they are, but most of all for daring to demand recognition. For daring to expect respect.

I know what you say about me behind my back. I've heard it from you about other people.

It is a privilege, I know, to be able to go about the world and not be immediately identified as disabled unless I choose to make it known. But it is frustrating to me, knowing that when I identify myself as such, I am more likely to get someone who will sneer privately at me than someone who will be sympathetic and understanding.

I have not yet begun, fwiw, to deconstruct the meaning and history of the word itself. I know there are many who have, and who have their own preferences. For now, I don't stick to any one word or phrase, but I will respect those who wish to be referred to one way or another.

I am still working to resolve my own identity. I do identify strongly with this movement in favor of people with disabilities -- for their rights, for their acceptance, for their betterment. I don't know if "disabled" is the right word for it. But I know that this is something I care deeply for, no matter what it's called.

Things that bother me, Part (n)

maybe I'm the one
maybe I'm the one
who is the schizophrenic psycho

I feel my heart rise through my throat every time the beats for this song start playing on the radio.

Schizophrenia and psychosis are two mental conditions that apply to multiple members of my immediate family. Severe depression and anxiety are also present.

The people who write (and sing to) these sorts of songs don't know what those words mean. To them, they're simply a stand in for "Angry Mean Bad Crazy Person."

Those people can fuck right off.

notes

I. I HATE THESE FUCKING SPASMS AHHHHH.

II. know that third word in this blog's name? yeah, it's not just the climate manifestations that's referring to. my brain has been fraught and frazzled and frustrated for days now. it's like there's a thick haze on the lens through which you view the world, so it takes so much more effort to make anything out, and then double that effort to make anything of it, and oh hell, just forget trying to actually then form and communicate a cohesive message to the outside world through that haze.


III. please excuse the design disarray. I have been mucking about with my templates and lost the sidebar content. and item II means that it won't be worked out immediately. give me a week or three.

IV. I so want to contribute to the disability carnival coming up at cripchick's. I don't know that I'm in a state right now to write something fitting by the deadline. regardless, check that out when it goes up.

V. I have awesome friends.

VI. I am noting this here to put pressure on myself to do this: I have two posts planned, for May 11th and May 12th, both days of significance for me. we'll see if I find myself able to follow through, or if I call it in at the last minute once again.

VII. fucking Versus. fucking work. I've had to work three of the last three round-two games the Penguins played against the Rangers. so I missed them. then tonight, finally, I'm off for the fourth game. and it's on fucking Versus, a channel we do not receive now that we've disentangled ourselves from the pulsing evil that is Comcast. we'd go and watch it outside Mellon Arena (totally awesome that they're doing that) if it weren't for the fact that husband has to work tomorrow. le sigh.

VIII. wii is awesome. yay mario kart!

Monday Family Blogging

Husband and child, so to speak.

Husband was lying down next to Buddy in the same position: tummy up, back legs splayed, front paws held up to one's chest begging-style, staring up wide-eyed but vacantly into the air.

He wouldn't let me take a picture of the two of them like that. Spoilsport.

Snapshots: Saturday

(Part of) a day in the life...

I write these bits and pieces because I want to fill out, flesh out, what it means to be -- well, any of the parts that make up me, anyway. In this case, there is relevance to my physical condition; what it means to be fibromyalgic, disabled, living with an invisible illness, managing all of that in a balanced way.

Please note I haven't had time to review and edit this. I am going to bed.

***

Yesterday I was scheduled to work 11-5pm. At least it was long enough a shift to allow a break -- usually I wander around the mall (at the end of which is the camera shop that employs me) and window-shop just to get my mind off the sales floor for a bit. I look at the kitsch in Hallmark and imagine how I'm going to decorate my someday dream-home (which will be small and comfortable and easy to care for). I browse through the clearance racks at Dots -- seriously, nice work pants for $5! -- or talk to the people in the jewelry shops and food places who know us fairly well. I will admit to having hobbled down to the Bon-Ton one time and lay on the sample Sertas.

I was working with my manager that afternoon. I get along fairly well with her, although she has her faults, just as any other human person. She had called me in a panic that morning; our alarm codes were all changed recently, and she needed mine, rightnow, and after I read it to her she belted, "I'll call you back later" and hung up. Apparently the alarm went off for a half hour, and the security guards and police were there, and the alarm company refused to turn the alarm off until she told them her alarm code -- which she didn't have -- even as she offered to prove her identity.

She was, understandably, flustered.

But the day went fairly well otherwise, very steady, and the customers were good. (Retail folks know: there are Good Customers, who are open and amicable but don't pry, who are patient and cooperative -- and there are Bad Customers, who put you in a sour mood, because they don't see themselves as working with you, but against you, no matter which position you see yourself occupying.)

I took one half of a painkiller before leaving for work, and another half two hours later, maybe half after noon. I took my midday medications around two-thirty. And maybe an hour later, I went on break.

When I returned, I had to jump right into things; my manager had three people to be helped and only one of her. And the amount of customers only grew. It was a blur for the following hour; I was juggling at least two customers at any one time. Maybe ten minutes before five, as I was talking to a twenty-something couple who had just walked in to look at digital SLRs, the older couple behind them insisted that they were "just" there to pick up -- what, photos, a warehouse order? Those are quick to take care of -- no -- a camera. And I've learned as much in my time here: there is no such thing as a quick camera sale. We have a bundle of free crap, and some other valuable extras, that we have to explain to the customer. We may be a nationwide corporation, but we operate like a mom-n-pop shop; we explain the basics of working the camera for folks who don't already have a handle on it, for instance. You don't get that at Wal-Mart.

Anyway -- they were obviously not happy to be waiting in line, so I left this couple handling two entry level SLRs at the front of the store to run back and grab everything they were picking up -- which was not simply a camera. It was a printer, and a package of memory cards, and a bag, and a host of other accessories. And I started to wrap up the sale, explaining the Bundle of Free Crap to them, when one of my coworkers walked in. I called him over and handed the older couple off to him, asking him to explain everything to them and ring the sale up, saying -- out loud -- "I do have two SLRs out over here!"

I was flustered too.

The young couple was, in fact, a young family. It was their first time out with their ten-day-old son. He must have gone through four or five cycles of sleep and wake in his time there. They handled it exceptionally, for it being their first time; they would trade off holding him, or feeding him, or rocking him, while the other partner was talking to me. They were very gracious, and the sort of customer who is easy to talk to. It was obvious the husband was more invested in the decision than the wife (who, being a new mother, was also exhausted; he didn't seem to understand why she kept going to sit down at the print bar) although they were both interested.

They ended up buying the Nikon D40, which is being cleared out -- photography, just like fashion, has a spring line that pushes out the last season's worth of product -- and the zoom lens. I went through everything they would need (bag, memory card, filters...) with them, explaining it to them the whole way. At one point, my manager, who was getting her things together to leave -- it being well after five at this point -- teases me about my husband surely wondering where the hell I was. I had been avoiding saying anything, even though it had been on my mind the whole time, because you could tell these two were the sorts of people who would feel bad for it -- and yes, they did.

I explained the damage protection and the rewards club; I explained the Bundle of Free Crap item by item; I pulled together the financing paperwork and called it in; I bragged about our brand new lab (which comes bundled with higher expectations for certain photofinishing products)... I don't know how many customers had come and gone in that time, but it was a lot, and they were, eventually, the only ones left. My manager had gone. My friend/coworker/replacement was cleaning up the mess inevitably left when we get slammed like that, and don't have the time to put everything neatly in its proper spot.

They left, happy, and thanking me profusely, around six-thirty. And once they were out of sight, my entire body fell slack, and I let out a long sigh. And I noticed --

It had been at least six hours since I had taken a the medicine I normally take every two.

-- I felt the pain suddenly. I hadn't even noticed, not that entire time.

And here's the thing. There are a lot of times when I don't notice the pain. That was my state for basically the entirety of my childhood. I had no reason to believe otherwise, so I learned to categorize how I felt as normal, because there was no outward indication that it wasn't.

But when I finally stop doing, and let myself just be, the pain makes itself apparent, bit by bit.

That's the problem with my early years. I never let myself stop. I shouldn't have to stop, was my unconscious thought process, because there's nothing abnormal going on to make me have to stop. And so I would force myself forward, no matter what. Even when I was sick. Even when I felt miserable.

And here's another thing. I missed some ungodly amount of school days every year, from pre-K to graduation. But that doesn't mean that I wasn't pushing myself to continue, attending school when I was sick and sapped, when I should have been home by any reasonable measure. It's just that I was in such a condition as to be missing that much school even while I was putting forth such greater effort than most of my peers, even the most driven of them.

Enough of those other things.

I made my way to the back, where I kept my belongings, and called my husband to apologize. And after a quick chat with friend/coworker, I left for home.

OK: here's one last thing.

Even after resting my tired body for the remainder of the day, and heading to bed early, and rolling out of bed a bit late -- even after my husband helped me wash myself in the shower this morning -- even after the painkillers --

I felt awful today. The first words I heard as I walked into work today were "You look tired."

And I put on makeup today. For the first time in weeks. Even with three types of concealer over the dark circles under my eyes, I managed to look significantly worse than usual, in terms of physical condition.

I was slow and sluggish. I slurred when I spoke (quietly). I shuffled instead of walking. I sat down any opportunity I was given.

Understand this: I am a driven person. When I am not weighed down by the pain and exhaustion, I am up and moving, doing, always doing something. I throw myself into whatever I am doing. I don't slack. I don't dawdle.

I suppose, though, in the end, I am that way because of this weight I carry. If I don't put everything I am into whatever I am doing, chances are it won't end up done.

The point of all this is that my pain is not a simple addition and subtraction problem. When I was helping that couple, I felt like I could keep going just fine. But I can't trust that feeling. I kept going, in this case, out of necessity. But all that time on my feet, upright, good posture, being social, keeping my shit together -- all of it without my pain medication -- I couldn't just make up for that by taking my medication (which I did) and resting for awhile. That shit builds up, even the smallest of it, and for every inch you add, there's a mile more I have to go to make up for it.

If that makes sense.

I'll leave you with something I have noticed over the years: if I'm not smiling, I'm not well. Really not well.

Friday miscellany

This was my 100th post. Cue confetti.

I may have an opportunity soon to get into photography. Not selling cameras or developing film. Actual photography. My friend/coworker does some portraiture and events on the side, but she'd like to develop that into a full-fledged photography business and has expressed interest in having me take part in that. I may be helping her with her next wedding ("Do you have any problems with it being a gay wedding?" Laughter.) just to get my feet wet. Given that I have had considerable anxiety about ever branching out into professional photography on my own -- I don't want to give someone subpar work on something that can't exactly be re-done, like their wedding day, because I was a newb and made the inevitable newb mistakes -- this would be perfect for me. Low pressure.

I am jonesing for a few new skirts. Full, swishy, longer skirts. (But not full-length -- something more from knee to calf length.) Summer is approaching and I've always hated shorts, but jeans are going to be unbearable. Plus, the swooshy skirts are just so much damn fun. It appears the style this spring is to put pockets on the skirts again, something I think is awesome, because I don't like to have to reach into my bra to pull out my chapstick.

Ahem.

Also, for the record. I don't like chocolate. I don't hate it -- I can eat it, in moderation. It makes me very thirsty (let me repeat for emphasis here, very thirsty) and it's not a taste I'm really wild over. However. My husband's parents gave me a solid chocolate computer from Sarris' for Christmas, and it sat uneaten for a couple months. And Oh. My. God. That is some divine shit right there. If there are any other chocolate non-fans like me out there, I seriously recommend getting your hands on some chocolate from Sarris (a local company, based in Pittsburgh, factory located in Canonsburg). You may find a renewed interest in the stuff.

Other popular food items I don't particularly care for: ice cream, pizza.

Ever since I went off the birth control and started the Lupron (can't really separate the two) I have been having these awful spasms in my lower back. It's not tremors; it's a single spasm, a strong jerk of the spine from somewhere in the upper pelvis area.

And it's getting fucking annoying.

I used to have spasms all the time; back in middle school, I was having them daily. Back then, though, it was at the base of the skull. A couple years after I started on the trazodone (Desyrel, an antidepressant, though I used it as a sleep aid) (twelve years of age), my doctor put me on cyclobenzaprine (Flexeril) to reduce muscle tension, and the spasms mostly disappeared.

It's both startling and outright painful. In the former case, it feels like a sharp bony hand reaching in through your skin and gripping your brain, like someone sticking a sharp needle filled with poison right in through the base of your skull. The whole body goes stiff and it takes a moment for me to crack my neck back into normalcy and free my head of the demonic interference. In the recent case, it feels much the same, except that it actually physically moves my body around, and jolts my very, very tense shoulders -- the same shoulders I go to great lengths not to strain, because pain in the shoulders inevitably travels upward, and if there isn't sufficient intervention (in whatever way -- painkillers, heating pads, lying down to take the weight of gravity off my head and neck, etc.) ends in a disabling migraine.*

And I've had to explain this as best I could to my husband, who gets a kick out of sneaking up on me, that surprising me is ok, but when you marry a physical sensation to that startling, what I get is, for lack of a better word, an intense shock, and it isn't painful in the immediate sense of the word (like getting a cut or a bruise) but it just does this thing to my nervous system, and it's just as bad as outright "pain." On the level, perhaps, of a sucker punch to the gut, or cracking your head off a wall or floor (when it's not serious enough to concuss or make unconscious).

Maybe the problem is just that we don't have a concept for that kind of "pain," as a society, because most people have never really experienced it.

Whatever it is, I'm tired of it. It happens in bed, it happens at work, it happens when I'm doing the dishes or sitting here at the computer. Maybe it's a reaction to the Lupron, maybe it's an interaction with any of my numerous other medications. I'll bring it up next visit to my wonderful gynecologist, but for now, I'm just sick of it.

*I use the word disabling quite literally here. When shoulder/neck pain and/or a headache become a full-fledged migraine, for me, I'm down for the count. I have to have a soft place to rest my head (and body), free of light or sound, so I can curl up and just wish for death instead of actually acting it out. I can't scream, can't cry, can't groan, because the movement inflames the pain. You can tell when I'm headed that way, because I speak very softly, attempting to control my speech such that my mouth moves as little as possible. My shoulders, neck and head stay stiff, because any movement causes pain, and pain building up such that it becomes unbearable is the whole problem. There's a point where there's no turning back, and I have to just suffer it out, taking the painkillers not because they're going to make me feel any fucking better, but because if I don't, it's never going to go away. I can be stuck in this situation for a day -- it never goes away in mere hours -- or for weeks on end, depending on how bad it is, how much I did, whether I can take the adequate time and have an adequate space in which and adequate resources with which to recover.

There was one time, during my first attempt at college, that I was in one of the art rooms for my 2-D Design class (with my favorite prof in the world), working quietly on whichever project it was at the time, surrounded by fellow students working quietly on theirs. And the simple scratching of pencil on bristol, rustling of paper, adjusting of seats, the hum of the lights overhead -- I was ready to throw up, and I knew I had hit that turning point, and I knew that I had to get my ass in my car and drive home right then, because five minutes from now I might not be able to drive safely, or at all. So I gathered my shit, quietly, stiffly and robotically -- moving my body, and especially my shoulders, as little as possible -- and left. Fortunately the prof had gone out on errand, because I would not have had the time or strength to stop and stand and tell him why I was leaving, and have him ask was I ok, and would I be ok and is there anything he can do and make sure you get this done or whatever -- I doubt I would have been able to conduct myself safely in a moving vehicle if I had waited through that, and forced myself to speak, against every inclination of my aching body. I left, without saying a word even to my class partner, and walked as quickly as I could while exerting as little force as possible (do you folks know how fucking hard that is? when you're in that state?) to my car, and threw my shit on the passenger seat and lowered myself down into my seat, and squinted my tired eyes the whole way home, and every step I took up to the second-floor apartment jarred up through my body from heel to skull, and I closed and locked the door to my room and fell down in bed, and I don't remember anything after that. To tell the truth, I don't remember anything after walking out the art room door, but I can tell you what I did because I know exactly how it goes, I've done it so many times.

And you know, I find it interesting that I cannot come up with an adjective that describes the intense sharp pain I felt in my entire body. I know aching, tired, sore, etc. but none of those describe that awful feeling, the tense and stabbing feeling over every inch of skin and miles deep below it. Granted, I've never been good at vocabulary.

Snapshots

Husband and I are going over the finances. It's a bit of a tight time (I say this, mind, knowing that we are trying our damnedest to land round two Penguins playoff tix, and have already bought Pirates-Yankees tickets, and things like how I have been on the lookout for a cute new headband/scarf lately -- so we are not poor, just cutting it a little close).

He and I did argue a bit for a few days about how to handle the finances. We already use Quicken -- something we both refer to as "the best investment we've made" (bought mere days after I moved in) -- but we use separate computers. One with XP, one with Vista. And apparently, filesharing is damn near impossible 'tween those two. And I hate to "nag" at him to sit down with me and update the finances together. And so we were hitting a bit of a wall, there.

Anyway -- we are deciding to sit down together nightly (for now) -- so that I don't have to be the one "pushing" him into it, and we bypass the filesharing problems. But we were discussing, for lack of a better term, allowances.

And husband objected.

I don't know what else to call them. As I told him, it's a constant in every financial arrangement between partners I've seen -- some amount of money each partner can have to spend on items without having to run to the other partner for approval, whether it's "$20/month" or "everything I earn after the bills are paid."

But it makes him uncomfortable. Certainly in a gendered sense (the Man, Bringing Home The Bacon, giving the Wifey her little "allowance") but also because we are both sensitive to any implication of control or abuse on his part -- I grew up in a family absolutely soaked in domestic abuse and my own mother has, projecting, called him "controlling" several times.* He is constantly monitoring his own behavior for any sign of this being true. I am constantly watching my life as a whole to make sure it does not happen to me -- partly for me -- but partly, as well, because I am desperate not to pass that paradigm onto my future children.

Anyway -- just a bit of a fragment I felt like pointing out.

*See, to her, she started losing control of me, and then he showed up on the scene. I, being a mere child (a girl, no less) with no agency (even in my mid fuckin' twenties) of course cannot be the one to have gained control of my own self -- there was a MAN in my life now, so he must be the one controlling me! This is a result of the way she grew up -- this is the only concept of a man in a relationship with a woman that she has. She simply cannot understand it happening any other way. And that is just damn depressing -- and a reason I am very, very sensitive to even the slightest sign it may happen in my own life.

I've calculated my age to be...

approximately 71.

The average age of menopause is 51 years, and they say fibromyalgia adds twenty years to the body...

:)

First Lupron shot was yesterday. It was a bit strange -- normally there's that whole dance in the doctor's office: they hand you the gown, then close the curtain (and the door) behind them, let you change, drape a sheet over the "private" parts, and come back in once you're all gussied up. I always have to laugh at it, because I certainly have no qualms about seeing my own genitals. I understand the reasoning behind it, most certainly, but it still feels a bit silly to me (when I'm visiting a doctor I trust, anyway...)

This time, my husband and I walked back to the room, the nurse closed the door and instructed me to lower my pants and lean against the examining table with one leg relaxed. I waited a moment to see if she'd leave -- no, she stood there preparing the injection. I looked at my husband. He certainly had no answers (I don't think this is an experience he's at all familiar with). So I obliged.

The shot was nothing. Bloodwork hurts worse than that. I hardly even noticed the needle.

But I didn't expect it to kick in quite so quickly. Symptoms are supposed to worsen for the first few weeks, and boy did they ever -- I got out of bed before 8:30 this morning, unable to fall back asleep for the pain. Lower back, lower abdomen. None of the medication is really helping it at all. (It's rare, on a day when I have nowhere to be, for me to get up before maybe 10AM. I purposefully sleep as much as I possibly can, in an attempt to make up for the fact that my sleep is only fractionally as effective as a "normal" person's.)

At least I know I don't have to work today, so I can take things at the pace I need to.

this is new to me. this idea that i should love my body. not hate it.

it's funny, because i was about to say "this isn't a post about body image." but it is, isn't it?

let's cut to the point. i'm not talking about beauty standards.

i'm talking about my body. this physical thing.

i need to stop hating that physical thing.

it works differently. it doesn't work like your body.

but that doesn't make it bad.

this is hard to grasp. i don't like this idea.

but maybe it's better that i respect my body, and how it functions, than malign it, and Other it, and see myself as working against it.

maybe i need to see my body as that physical thing that is trying to help me be everything i want to be.

maybe i need to understand that i just have to interact differently with my body to accomplish that.

and that is not bad. that doesn't make me Less Than. that doesn't even make me different -- or it shouldn't, anyway.

maybe the problem is that i have been so indoctrinated into this culture that i can't even see myself as just being -- it's always how different i am from the "normal" "healthy" body.

you know what, dammit, my body is "healthy." my body is damn well fucking "normal" for me. when i understand how to work with it? i live a pretty damn nice life.

but the culture i live in doesn't allow for that view. the culture i live in says that my body is not only different, but different in a bad way, because it doesn't let me live my life like a normal person does.

fuck that.

i have a lot to work on, here.

revelation: i wouldn't have such a hard fucking time learning how to work with my body if my culture hadn't taught me to expect to be The Norm. if my culture hadn't taught me that if you look like you're fully-abled, then you must be. if my culture hadn't taught me that if it doesn't show up in the bloodwork or the ultrasound then it doesn't exist. if my culture hadn't taught me that my pain is simply pathology. if my culture hadn't taught me about welfare queens and "milking the system." if my culture hadn't taught me that disability is both scary and pathetic.

in the meantime, i need to go take my weekly shower, so my gynecologist isn't put off by my oh so gross body when i get my Lupron shot tomorrow.

...maybe i just need to understand that this is how my body works and damn it all, there shouldn't be anything wrong with that -- the fact that there is anything "wrong" is a sign of a fucked up culture -- not of a fucked up body.

I just don't understand

Our neighbors to the left kept their air conditioner in their window all winter. For the last two days, they've had it running nonstop.

When I walked outside today, I noticed the neighbors downstairs have their a/c installed and running as well.

It's been a beautiful upper 60s/lower 70s for the last week or so. It's gorgeous outside. It's refreshingly comfortable inside with the windows open and the ceiling fans on low.

Why drag out the a/c now? Summer will be long and humid enough -- I'd rather not live like it's summer for any longer than I have to.

fragment

I need to start writing regularly again, and I'm not willing to artificially separate out the personal from the political. Any who make it through these personal posts, and even offer some help, have my regards and deepest thanks.

***

hearshot: so what else has been going on?
Sent at 8:39 PM on Sunday
amanda: right now?... work, cats, sleep, grocery shopping. insurance woes. cleaning house. not much else
hearshot: i can still be interested in your life even if it's the same old same old, you know
amanda: no, it's just that i can't even think of anything new to say
that's what i mean by "blank," really. besides the above, i just sit here reading blogs
...
amanda: i don't know
on the one hand, i am obviously so much healthier and have been doing great things since i moved here
hearshot: i... was not expecting that response
amanda: but on the other, i still just feel blank about it all
hearshot: in what way?
amanda: i don't feel the motivation to get up and do something with myself, at all
i could be out doing photography, i could be writing so much more... i used to love writing, and i hardly ever do it anymore
i could be creating something
i take pictures of the cats, and that's really it.
i don't have any friends besides [coworker] here
hearshot: i hate to say, but you sound rather like me
amanda: and i never go out with her
i miss college. i felt like i was doing something there
i'm doing something awesome here too, after all. i do have a great job, i work with people i largely like doing stuff i largely like. i'm teaching classes (did one tonight), gaining experience, and obviously making some money
it's not like i'm sitting on my ass all day doing absolutely nothing. my life is actually fairly full. but i guess i don't feel fulfilled.
my internal gauge still seems to be near "empty"
hearshot: i don't really know what to say
amanda: neither do i, obviously

***

I don't know what to do.

I had a long conversation with my husband (for whom I really need to come up with some witty pseudonym) on the subject, starting off by sending him the above conversational excerpt. It didn't end neatly in a solution; it was just some venting and some comforting, and I've been somewhat depressive since then.

I remember how connected I felt to myself and the world around me back when I was journaling regularly. I would have times where I'd fall out of writing, but they inevitably lasted no longer than a few months, and I'd be back again. But it's been a good year and a half now since I took to paper (so to speak) about my life.

As I said, I'm not willing to separate my personal and political writing anymore. You all know the mantra. It does make me somewhat nervous to write in public again.

I'm feeling disconnected right now. I've been noticing it since just after I moved here -- December 2, 2006. I started my anti-anxiety medication a month or two before that. I'm worried that may be contributing. But I'm afraid to mess with that, considering the severe mental crisis I went through in the summer of '06, living with my mother, trying to tie up loose ends in California before moving out here to PA, with her mental troubles flaring as my independence reached new heights, at the same time I was first making a go at life without an antidepressant (which I took, as a sleep aid -- not even aware of the antidepressant properties -- from ages twelve to nineteen). I'm in a healthier environment now, but that doesn't make the lack of "support" any less scary -- and I also worry about how it will affect me as I'm embarking on the Lupron treatment, not knowing yet how that will affect me.

There are also just too many external factors. I miss home. California. This is my home, here, in southwestern Pennsylvania. But I still just feel an ease inside when I'm in my home state. I haven't been there since our wedding last May, and that wasn't even a proper visit, but instead a three-day rush-around.

I'm still confused about my relationship with my family. Something broke this last Christmas. I went from feeling complete terror when considering anything to do with them, with my childhood, with my home -- to feeling rather relaxed, not entirely positive, but no longer so panicked. I don't know what changed. I really don't. I don't know what I feel.

I've lost steam. I don't even know what to say to myself.

Sure! Sign me up!

What does it say about my experiences with the healthcare industry that when I see this:

Why do we want to know more about you?

In order to personalize the site to you, we need to know certain things about you. For instance:

• We need to know your age and gender to remind you of the check-ups you need.
• We've got a great pregnancy program so if you're pregnant, tell us and we'll help guide you through a healthy pregnancy.
• Your email and zip code helps validate that you signed up for the site and no one at our organization did it for you.
• And so on..

I read this:

Why do we want to know more about you?

In order to increase our profit margins, we need to know certain things about you. For instance:

• We need to know your age and gender so that we can "adjust" your premium and care accordingly.
• We've got a great pregnancy program so if you're pregnant, tell us so that your employer has the option to discriminate against you based on it.
• Your email and zip code helps us earn money by selling it off to spammers, both "legitimate" and il-.
• And so on..

Cynical and unfair? Yes. But when you've lived the life I've lived, in the body I've lived, with the experiences I've lived, you'll understand why I'm not so eager to provide my employers' insurance "discount" company* with any of this information.

*I'm required to have this insurance in order to be listed on my husband's insurance, and I have to have a denial from my employers' insurance before his employers' insurance will consider any claim at all. Which is kind of easy, considering the former doesn't cover anything anyway. Throw soon-to-expire Medicare and on-going tertiary Medical Assistance for Workers with Disabilities into the mix, and I've got a headache-inducing full-time job on my hands juggling all of the above.

to living with, living with, living with -- not dying from disease

Right now, this is the schedule for the rest of my fertile life:

1. Discontinue birth control use (one more week).
2. Begin Lupron, 6-12 months.
   
3. Low-dose progesterone-only birth control (such as Depo Provera) for a maximum of three years.
4. Have children, as close together as possible.
5. If symptoms return, hysterectomy.

.... all which will likely happen before I reach the big three-oh.

Lupron is a treatment which essentially induces premature menopause. It regulates a woman's hormones, keeping them artificially low. Which means I'm going to be going through hot flashes and night sweats at the bright young age of twenty-two. You know, they already say fibromyalgia instantly ages the body twenty years...

That is done for six months, unless symptoms return immediately after it's stopped, in which case it's continued for another six. During that time I am going to have to have my bone density regularly monitored because I will be at high risk for osteoporosis.

After that comes the Depo, which I can't use for any more than three years, because at that point the risk of osteoporosis begins rising. I could use a low-dose oral contraceptive pill, but even Mircette (the one I use currently) contains 20mcg estrogen -- and estrogen is the hormone which inflames the endometriosis, so we're wanting to avoid that if at all possible.

Then kids. If we don't have trouble conceiving. If pregnancy doesn't turn out to be too hard on my body, or even outright dangerous. If I can handle birth. If I can handle raising a child -- much less two or three. If. If, if...

By this time, I'll be in, what, my late twenties? Letting my cycle take its natural course (which, uh, is rather required if I want children) is only going to inflame the endometrial implants, because my estrogen levels will be that much higher.

Hopefully the Lupron will shrink them enough that it isn't a concern for me anymore. They are, after all, not large, just very diffuse. But there's already scar tissue that's pulling on the back of my uterus and lower bowel in several places.

But if I'm not so fortunate, and my former symptoms return (I can't afford to be indisposed for several days at a timeif I've got kids about)... pretty much my one option at that point would be to remove the uterus altogether. I won't be able to return to something like Depo, and again, the low dose OCPs have still been inflaming the endometriosis over time, low dose or not. And the average age of menopause is, at current time, fifty-one. That's a full twenty years -- twice as long as I've even been fertile so far.

This is just overwhelming. I don't know if I can handle it.

I'm used to the fibromyalgia and even my anxiety -- I've come to a point where I understand them, for the most part, and I've found a good pace so that I can manage them effectively. But both are, for better or worse, conditions that are "all in my head," by conventional wisdom. And, for better or worse, I've internalized that. I know that they're all too real, and can be outright disabling if I don't manage them correctly, but I know that most people don't really understand either condition and are more likely to dismiss it than try to learn.

But this? This is real. It's detectable. I have the pictures to prove it. And unlike the other two conditions, which are disabling in a nebulous, hard-to-explain sense, this is a disease that can fuse your organs together. That shit is just fucking scary, I'm sorry.

I'm not used to this. Not at all. I was on knife's edge for the last couple days, and though the angry irritability has calmed down now, I'm still... unsettled. Very.