39 posts categorized "health"

June 07, 2013

Doctors Bad, Doctors Good

I wanted to write about something I was thinking about last night. I've been very frustrated throughout my life by the quality (or lack thereof) of the doctors I have to deal with.

To recap: I'm a type one diabetic with Hashimoto's -- both for about 32 years -- plus vitiligo, and a couple other smaller autoimmune isshooz, not to mention allergies. I've also recently (last 3.5 years) acquired chronic fatigue syndrome, which is suspected to also be an immunological disease. Basically, my immune system has fucked. me. up.

When you have diabetes and hypothyroid, your type of specialist is an endocrinologist (in the US, anyway. Germany is another story.) Endocrinologists (or Diabetologists in Germany) are doctors who deal with a lot of chronic and/or lifelong patients, and that necessitates ... well, let's let Wikipedia tell us:

Endocrinology involves caring for the person as well as the disease. Most endocrine disorders are chronic diseases that need lifelong care. Some of the most common endocrine diseases include diabetes mellitus, hypothyroidism and metabolic syndrome. Care of diabetes, obesity and other chronic diseases necessitates understanding the patient at the personal and social level as well as the molecular, and the physician–patient relationship can be an important therapeutic process.

You'd think that something that makes it into Wikipedia -- and has its own subhead, no less -- would actually make it into the real-world practice of endocrinology, wouldn't you? But really? Not so much.

I've been a diabetic/Hashimoto's sufferer for 32 years, on three continents, in three countries, in eight cities, and under the care of 13 diabetes/endocrinology specialists. Of these, only one was a good doctor (Professor Meissner of Berlin, Germany) and one was a decent doctor (Dr. Bohannon of San Francisco, who isn't really taking patients anymore.) The rest were folks I tolerated so I could get my prescriptions and tests.

So, what, in my opinion, makes a doctor good or bad? Well, I'll tell ya. And, as usual for me, I'm gonna do it with bullet points. Here's a comparison of "Bad Doctors Do" and "Good Doctors Do."

Big Fat Caveat: there are types of medicine which are very specifically fixit. I'm thinking orthopedic surgeons, sports medicine, plastics, maybe all surgery, ... even oncology to a certain extent (although maybe it shouldn't be. I dunno, should we look at cancer as a lifelong illness? Nobody wants to but ...) I'm not speaking to those kinds of doctors, who are being asked by patients and society very explicitly to fix a specific problem which tends to be localized. This is for all the other doctors, and especially the endos, who ought to know going in that their patients are patients for life.

Bad Doctors:

  • Problematize everything and want to fix the problem. I think this might be that the profession self-selects for people who want to fix problems mechanically, people who greatly desire prestige, or both. The media contributes to this by presenting us with narratives of good doctors who want to become doctors because they lose a loved one to a curable disease or catastrophic injury. The overwhelming glut of hospital shows (vs. private practice shows) mirrors our medical system's decline and the rise of HMOs. We're all viewing medicine as a case-by-case practice, in which patients only come when there's a problem, and tend not to come back. And again, the profession self-selects for people who thrive in, or at least desire, this kind of scenario. Thus, when a patient won't/can't live day-to-day according to the doctor's prescriptions for behavior and life-structuring, the patient is blocking their own treatment. Their lives/lifestyles are problems that need to be fixed, rather than human lives that treatment needs to be adapted to.
  • Get frustrated when they can't fix things and blame the patient. If they're fixit guys they just get frustrated, and if they're prestige-hounds, they take the inability to fix things as an attack on their prestige in addition to that. In either case, the problem is a blow to their self-esteem, and they tend to blame the patient either directly (by telling the patient that they're doing things wrong and getting mad at them) or indirectly (by losing interest in the patient and refusing to put themselves out for the patient any more.)
  • View themselves as the subject, and protagonist, of the patient's case. This is probably a rather subtle distinction for the doctor, but it's pretty damned glaring for the patient. In the doctor's mind, the doctor's thinking and actions are central to the case -- because the doctor's fixit action is the action that moves the plot -- and the patient's thoughts and actions, much less the course of their life, is of little to no consequence, because they don't have the medical expertise to understand their own bodies and lives. I think the problem may be that many patients also view themselves as camera fodder for a real-life movie about a heroic doctor. You should read the doctor testimonials on Yelp. The positive reviews read like episode treatments for a hospital show like E.R. or House.
  • View patients as grist for the heroic doctor mill. Yes, everyone is the center of their own universe, and the doctor's perspective is one of a person who is in the office all day while different people come in and out. Yes. But, as a consultant, I had no trouble understanding that I was there to serve a less skilled client with my greater expertise, and that it was not the client's duty to give me opportunities to hone my expertise against their inexperience. The practice of medicine does not use the language of "consultant/client" and that's for a very deeply rooted and problematic reason: namely that our medical system doesn't view doctors as consultants and patients as clients. The subjectivity/objectivity of doctor/patient is all backasswards. Patients are there for them to exercise their doctoring on. A patient who insists on viewing things differently is a difficult patient. A patient whose disease won't behave the way the doctor expects is a difficult patient. A patient who wants to make her own decisions is a difficult patient.
  • Don't listen to the patient. This is a problem with a number of facets. For example, many doctors I've encountered simply don't listen at all. They get impatient, interrupt, look away when you're talking, don't listen. (I had one doctor who stood at the door with his hand on the doorknob during our consultation. I had to call him back twice to finish telling him what was wrong.) But there are also the doctors who make a big show of having long intake interviews and long appointments, and give good bedside manner, but during that time, they're not really listening and it takes you a while to notice. (One doctor, touted as one of the best in the country, really made me feel heard during our intake interview. But when I saw his notes from that interview later, I discovered that he had actually written down the opposite of what I'd told him in the interview. He'd actually asked me yes or no questions, to which I'd answer no, and then he'd written down yes!) There are also doctors who listen to your answers to their questions, but dismiss extra things you tell them as unimportant. They determine what gets considered (by them) and what doesn't, and ignore anything outside of what they consider important. They don't trust the patient to articulate their own disease, their own experiences, and their own lives.
  • Doctor by numbers. This is an extension of not listening. I understand that doctors are trained to operate according to protocols, and that the protocols are established by numbers and probability. I get that it works, especially in triage/emergency situations, or with patients who don't have long-term chronic illnesses and are often appearing with new symptoms for the first time. I get it. But we're talking about chronic disease doctors who see their chronic patients 2-4 times per year, every year, and are supposed to be helping these patients manage lifelong, complex, and mutable diseases. Doctoring by numbers encourages doctors to stick to what's probable and expected and ignore outlying manifestations, and atypical symptoms.

    But for someone like me, whose entire life and course of disease has been atypical, this is a really dangerous way to treat a patient. I've had two doctors call me in a panic (only after taking a blood test) and refer me to another doctor because they had no idea what was going on with me, even though I'd been having weird symptoms for a while and had been asking them to work with me to figure out what was going on. (In both cases, they were simple, small things that they simply weren't trained to know about.) I've had another two doctors simply ignore a huge problem because their protocols didn't tell them how to fix it (which is how my chronic fatigue syndrome went undiagnosed for over two years.) They didn't even try to refer me to anyone else, or make any suggestions about how I could go about figuring out what was wrong. They just gave up.
  • Block communication between themselves and patients. Chronic disease docs need to be available to deal with issues as they come up. Life is lived in between appointments. Doctor's answering services (as opposed to their office staff) used to be perfectly adequate to connect doctor and patient. You left a message, they called the doc immediately and conveyed the message, the doc called you back when s/he could. Easy. I never used to have a problem talking with my doctor within 24 hours of reaching out. Nowadays, with email, docs have something even more simple (and inexpensive) patients could use to communicate directly. But now, docs aren't using either: the answering service, or the free email option.

    One doctor I've worked with used to have an email address, but then shut it down when he said that some patients were contacting him too often. Seriously, who does that? Who cuts off communications with all of his patients because one or two email him too much? (And does he not know how the delete button works?) This doc also takes a week to call back, if he calls back, and half the time, he doesn't. This issue of communication is directly related to viewing your patient as a guinea pig or a dependent rather than a client and decider. If you are a consultant, you can't consult without, you know, consulting. Consultants give their clients their phone numbers and emails. If you're a hero/fixit guy, on the other hand, you're probably thinking at some subconscious level that patients should be seen and not heard. You don't need the distraction and it only encourages them to think their thoughts and ideas and words are important.

Good Doctors:

  • View the patient as the decider. Patient as manager, patient as life-holder, patient as protagonist, patient as client, patient as employer ... what have you. Patient as the agent in the case. The (very few) good doctors I've seen have all been very laid back in the examining room. I think it's because they know it's not their life or health on the line. They're just there to give good advice to grown-ass adults who get to make their own decisions and have to bear the consequences alone. So their job is actually easier than the jobs of hero/protagonist/fixit doctors whose prestige and self-esteem are bound up in making the object/patient/grist/antagonist/disease behave according to plan.
  • Take active steps to empower patients to inform themselves. I can't tell you how important -- on many levels -- it is for a doctor to hand you an article or a slip of paper on which they've written down a book title or a website url. I can also tell you exactly how many have done so for me: two. Referring patients to outside information should be a no-brainer, but I actually think that bad doctors deliberately avoid it because they don't want to have to waste their time fielding the questions and theories that will ensue. There are a lot of other resources -- support groups, trainings, consultants, products, etc. -- that a doctor can offer or make known to you that most doctors simply don't. (In addition to the two mentioned above, only one other doc has offered any of these resources to me.) Perhaps they shouldn't be, but doctors are the primary source and clearinghouse of information and resources. We have no other. If the doctor does not act in this manner or instruct their staff to act in this manner, this service won't exist for patients.
  • Treat the patient as the decider. Some doctors will tell you that there were other choices but that they chose this for you, without explaining what the other choices were. (Yes, this has happened to me, many times.) Other doctors will only present you with one treatment option, and will only tell you there are others if you specifically ask. Most of these doctors won't, or will only reluctantly and angrily, lay out the pros and cons of each option and sit still while you consider and decide. (I once insisted on making a decision for myself and the doctor actually gave me a pamphlet and left the room to visit another patient "while I was deciding," rather than sticking around to lay it out for me and answer my questions. When he came back and found that I, inevitably, had questions, he got impatient. This was for eye surgery.) I can't stress enough that it is not the doctor's job to decide your treatment for you. The doctor has no right to do that. It's the doctor's job to enable you to make an informed decision for yourself, i.e. to consult with you, as a consultant, and lay out your options and their pros and cons. If they have to spend the whole day saying the same things over and over again to different people, well, that's their fucking job, and they get paid a mint to do it.
  • Give the patients plenty of time in appointments -- and make time for follow up phone calls. My wonderful doctor in Germany -- Professor Meissner -- typically made you wait 1-1.5 hours in his waiting room after your appointment was scheduled for. He took his last appointment at 4 pm, but people would be in his waiting room until nearly 7. And he took walk-ins every day and bumped scheduled appointments back for them. No one EVER complained, because everyone got exactly as much time as they needed with him. Sometimes it was ten minutes, sometimes half an hour. BTW, he only had office hours four days/week, like a lot of docs, but when he was there, he was completely there. He was available for phone calls but I never made them because our appointments were so thorough.
  • View disease/life management as a strategy, with tactics, and one that has to be adjusted to fit each life. I'm not sure I need to detail this. It's the opposite of doctoring by numbers. But I guess I would add that they view disease management as a subset of life, rather than something completely separate from life, or something that life interferes with and shouldn't be allowed to interfere with.
  • Ask you about your life, and follow up with detailed questions. Dr. Meissner would specifically ask, and Dr. Bohannon wouldn't ask, but would usually listen when I told her. I'd tell Dr. Meissner when I had a broken heart or when I was going on a trip, or if work was stressful or good. He always knew what was going on in my life in general (he took notes and followed up) and could ground his suggestions for management in the context of my actual life. He knew, and told me, that stress affected me physically, and that the course of my life affected how I approached my diabetes management. And his and sometimes Dr. Bohannon's suggestions for actual disease management tactics referred clearly and specifically to things I'd told them about what was going on in my life. Both of them gave me the party line about what I should be doing, according to protocol, but both listened when I said I wouldn't or couldn't do that, and helped me come up with compromises or alternative tactics to adjust to my actual life.
  • Listen to you and think about the things that you consider important. A good doctor will realize -- and actually tell you -- that you know your body best. A good doctor will empower you to think and talk about what's happening to you and to use their knowledge to improve your own knowledge and understanding. Dr. Meissner took my every idea and thought seriously, even if some of those were quite ridiculous. When he didn't have an answer, he'd say so, and say he'd think about it. And he proved that he had by coming back to me in a later visit with an answer or a study or a suggestion. If I said something silly, he'd explain to me why it wasn't quite right. Dr. Bohannon often snorted or dismissed my silly ideas, but she just as often walked me through the why. Frankly, the bedside manner is a lot less important than the substance. Even brittle, querulous patients can tell when they're being respected and when they're not.
  • Read and study and keep up with the field, and parallel tracks and make this knowledge available to their patients. Dr. Meissner was the head of the national diabetes association. Dr. Bohannon was heavily involved in research. Not every doctor can, or wants to, do this. But I think reading medical journals is less taxing and time-consuming anyway. Why aren't more doctors doing the reading? And if they are, why isn't the reading making it into their practice and their discussions with patients? Most doctors I've seen, you wouldn't even know if they were literate, because there was no evidence that they ever read anything (including your chart.) And it's not just their specialty, and not just medical journals. I've been given articles from mainstream magazines (because they're easier for a patient to understand) and also heard advice from good doctors that was gleaned from patient anecdotes and other sources. Funny thing about docs who listen to their patients: they hear really useful and interesting things they can pass on to other patients. Dr. Meissner would come back from conferences and tell me about the sessions he'd attended and what the takeaway was. Dr. Bohannon talked about what research was currently happening and what the implications of that research could be. They gave me ideas. They gave me grist.
  • Have a "let's find out" attitude. Yeah, one doctor can't know everything. And if your symptoms are atypical (as mine often are) they could mean anything. I get it. But there's a difference between your admission of ignorance causing you to shrug and look away, and your ignorance inspiring you to find the fuck out what's going on. A chronic illness practice like endocrinology is going to have a lot of daily management of disease issues, where the doc has to help the patient adjust a standardized treatment protocol to fit their life. But it's also going to have some of the special issues that are individual and unexpected -- sudden illnesses or creeping symptoms that puzzle both patient and doctor. And these things are often easily diagnosed wrong. I've recently had a lot of experience with docs easily diagnosing something weird that's wrong with me, only to discover later that they were wrong. It's at that "you were wrong" moment that the true quality of a doc comes out. Do they shrug their shoulders and say, "I don't know what to tell you," or do they frown and say, "Hm, let's figure this out"? I can tell you right now which type of doc is the one who's actually going to be of help to you.

Okay, I know that Dr. Meissner operated in 90s Germany, where every individual was required to have health insurance, and there was a national insurance plan, government subsidized, that paid for everything: dental, eye, appointments, prescriptions -- everything. I know he had hella leeway and he fully took advantage of it. BUT. All of the other doctors I saw in Germany (and I saw a lot of them; the insurance allowed me to see as many docs as I wanted, for free, and I took hella advantage) were bad or mediocre doctors. Oh, I could tell you some horror stories. Point is: a good socialized medicine can make it easier for a doc to practice good doctorin', but it's not socialized medicine that makes a good doc. It's good doctorin' that makes a good doc.

One small note, and I know they've done studies on this and the majority feel the opposite of how I do, but: in Germany, doctors call the patients Mr. or Ms. Lastname. Here, until the last five or six years, my doctors have all been older than I am, so being called "Claire" by someone whom I address as Dr. Lastname isn't quite so outrageous. But now that I'm starting to see doctors my age or younger, the relationship implied in that naming inequality is starting to chafe. I'm the fucking client. I'm the employer. Either they give me their first name or they give me equal formality. Who do they fucking think they are?

March 18, 2013

Today's Mantra: It Does Not Help

It does not help to beat myself up for having no energy today, although I "feel fine."

It does not help to wonder if I just got up and put on street clothes would I feel differently.

It does not help to wonder if I'm just being lazy.

It does not help to reflect on how "curious" it is that sometimes "fatigue" means nothing more than a complete lack of will, and all the while secretly think that it's a cover for laziness. (Isn't it?)

It does not help to force myself into the presence of others when I'm in a "bad mood," thinking that I should just "get over myself."

It does not help to know intellectually that a "bad mood" means I'm tired today, but not to act appropriately on that knowledge.

It does not help to behave as if I'm not sick.

It does not help to be stoic. I do not have the energy to be stoic.

It does not help to second guess the decisions I make about being tired. I know when I have energy, and I equally know when I don't.

It does not help to waste time and brain space "regretting" that this time in my life is wasted. I have nothing to regret. I haven't done anything wrong. This is just a more subtle way of calling myself lazy.

It does not help to feel badly about not writing today, this week, this month. I do what I can.

It does not help to think that this is not who I am, really. This is really who I am, now. I am not my disease, but I am my responses to it, among other things.

... and yes, I am acting, slowly, on things that might help. Suggestions, and especially referrals, would help.

March 11, 2013

Check-In

I don't really have much to say. Haven't lately, which is why I haven't posted. But I did promise (myself) that I'd post weekly, and I'm way overdue. So here's what I've been thinking about:

  1. Was told recently by a friend trying to sell an urban fantasy series that the agents say UF is over. It's a depressing thing to say when you've just told somebody you're working on a UF series. Also: do I care if the industry says "UF is over"? If I do actually finish this book and nobody buys it, I'll just post it on the web.
  2. If I got well again, would I go back to being an arts administrator, especially an executive? I have no idea. I know the first thing I would do would be to go away somewhere and get da nobble finished. In fact, my first priority would be to get my writing habit reestablished (something I'm trying to do now.) But would I go back to a regular arts admin job and let it potentially swallow up my writing practice (again)? Hm.
  3. I'm going to cut my hair short this week. This is what I'm thinking. I need a short haircut that doesn't read "guy," and that works with wavy hair. Thoughts?
  4. Trying to get it through to my parents (who are in town for a month) that I can't see them every day. If I do, I can't do anything else. Sigh.
  5. This kerfuffle makes me tired. This fight was already fought. Why was it unfought? Why are we fighting it again? Argh! I love this, which is Kate Harding saying basically: we all have to live in this world and make compromises with the institutions that run it. Being a good feminist doesn't mean you never compromise; it means, rather, that you cop to your compromise when you make one, and admit that you're contributing to the status quo, even while you're explaining why you did it.
  6. And finally, this is this week's happy.

February 15, 2013

CFS Info Gathering

I've been trying to read what I can about Chronic Fatigue Syndrome online but when I google the words, I get a lot of Mayo Clinic and WebMD stuff. Unfortunately, those medical sites only post what can be substantiated by studies, so the nuance is missing. Also, they only use scientific language, so you might not be able to recognize your symptoms.

It wasn't until I googled one symptom "post-exertional malaise" for my last post that I found a series of articles on About.com by a woman with CFS and Fybromyalgia (they often go together, although I only have the one), which is well-written, easy to understand, and describes what I have in a way I recognize. Finally!

Here's the finale from her article "Understanding Chronic Fatigue Syndrome: A Simple Explanation."

Chronic fatigue syndrome can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

  • It's NOT psychological "burn out" or depression.
  • It's NOT laziness.
  • It's NOT whining or malingering.
  • It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
Chronic fatigue syndrome is a serious, life-altering, frustrating, often misunderstood illness. What people with ME/CFS need most of all from those around them is emotional support and understanding.

Exactly. That's what I keep trying to tell the new folks at KSW (where I worked/work on the board). I think they get it, but it's really hard to be getting to know new people when I'm like this. I feel like I'm coming across as moody, whiny, difficult, flaky, etc.

I was always "difficult," but I used to be more energetic than everyone else, passionate, dedicated, able, profoundly competent. I used to be the one who picked up everyone else's slack.

It's possible now that no one new will ever see me this way again.

February 14, 2013

Post-exertional Malaise

It's one of the symptoms of Chronic Fatigue Syndrome, and it basically means that after you exert yourself, you have a CFS flare-up -- a symptom flare-up. For me, it means getting really tired, or just getting really no-energy.

I had a really good three days the past three days. I got up at a reasonable hour, without too much dragging, made myself breakfast, did yoga, went out to a cafe or, on one day, the library, to do research/writing on my UF novel, walked there and back, made myself dinner, and stayed within my calorie limit (I'm trying to not gain any more weight.)

Today started out the same: reasonable get-up, breakfast, yoga, shower ... and then, yeah, I trailed off. I kept trying to get myself ready to go to the cafe and write some more. The cafe has good salads and that was going to be my lunch, and I sat at the internet and surfed and got hungrier and hungrier. But as I got hungrier, I also got more tired ... until I finally realized that I was having the latter half of a bad day. I considered making lunch but realized I was too tired, so I went to the Mexican place two blocks away, doing the CFS shuffle the whole way.

The CFS shuffle makes me look (in my imagination, I don't really know how I look) like a junkie on the nod trying to walk down the street. Have you ever seen that? Where they're so high they can barely put a foot in front of the other? That's me on a bad day. I'm walking, and my brain is going at close to normal speed, so I can tell that I'm moving too slowly, but I simply can't make my legs move faster.

Usually post-exertional malaise happens pretty soon after exertion. (And it's all exertion, not just physical. Having a two-hour meeting can knock me out for the rest of the day as well. So can having dinner with friends, or writing intently for a few hours.) Generally, the malaise comes because I've used up all my energy with the exertion.

But this time, it seems I'm PEMing for the past three days all at once. Interesting.

Also! I found this article from a lupus sufferer that explains how you have to get through your day when your energy is limited. It's called The Spoon Theory. From a website called "But You Don't Look Sick.com" Indeed.

January 23, 2013

When Is the World Unfair to You?

I had a strange and unusual thought yesterday: this whole dizziness thing is unfair.

It's strange because I've been sick for three years and have, bit by bit, been losing my physical conditioning, cognitive ability, ability to work, relationships, and pretty much everything I value about myself or my life. But I guess because it's all been bit by bit, at no point have I stopped and thought: wow, this is unfair.

But yesterday I thought that the dizziness was unfair. ... not on a global scale; nor even on a personal global scale; but rather with reference to the fact that it came now, in January, a couple of weeks after my expected CFS "remission" finally came, and three or four months late at that. I finally was getting some relief -- some energy, some ability back -- only to have it swatted away by the worst symptom of all the symptoms I've had in the past three years: vertigo.

It's funny that that seems unfair to me, but nothing else has struck me as particularly unfair in all of this.

Of course, I've always -- well, always in my adult life -- been aware that all my privileges in this world are unfair in the other direction. Surprisingly, I've never been harshly bothered by unfairness that benefits me (/sarcasm.) I have been struck now and again -- and increasingly as I get older and more aware that I'm not the center of the universe -- by how unfair things are for other people. Maybe that's why I don't usually think "unfair!" about myself.

But I don't think it's because I'm used to thinking of myself as privileged. I just don't think about things with regard to myself as fair or unfair. They just are. I've been sick all my life but it hasn't been enough of an inconvenience to prevent me from doing the things I want to do, so I don't think of my illnesses as unfair. I think it also has to do with the fact that I've never thought about my illness -- or my body for that matter -- as separate from some essential me.

Or maybe I'm wrong. I can't think too well right now because I'm dizzy. :P

Whatever the reason, thinking about the world being unfair to me is a strange and unusual thought for me. I wonder how many people out there genuinely think "unfair!" about their personal circumstances with any regularity.

January 20, 2013

Dizzy Broad

So I promised to post at least weekly and today's the day or I'll have failed in my resolution while still in January.

And I was really feeling better this month, for a whole three weeks or so, but then I got dizzy a couple of days ago. Sigh. That's what my life has been for the past three years: a few good days, followed by weirdness and scaryness. Or scariness.

I've been dizzy before: three times in fact. The dizziness is one of the things that really made me completely consciously aware of how doctors work: according to protocols mostly, and not by really paying attention to patients and taking cases each one at a time. I had the same kind of dizziness (mosty "lightheadedness" not spinning) three times, and each time I got a different diagnosis. Well, the first time it was a virus, and the second time BPPV. The third time I self-diagnosed it as allergies when the BPPV exercises didn't work.

This time, it's spinning, as well as lightheadedness. And it's worse all around. I have the lightheadedness a lot more, PLUS spinning when I tilt my head in particular ways. It might even be allergies, since my nose is a little bit, a tiny bit, runny. But that's it.

Anyway, this isn't very interesting, even to me, but it also does kind of fill my attention and leave room for nothing else. I think I'm gonna go do something. Maybe if I get outside I'll feel better.

January 12, 2013

Nothin' To Do No One To Do It With

There's a funny interaction between having nothing to do and having no energy to do it with. It's Saturday night and I have nothing to do and nowhere to go because I've had chronic fatigue syndrome for three years and can't reliably go out and be with people. So I've stopped looking for things to do, staying on mailing lists, exporting evites and checking my FB events, and making dates with friends and dates.

There's a feeling of relief when I survey the night and realize it's Saturday and I have nothing to do and no one to do it with. I'm not sure if the relief is that I have nothing to do because I wouldn't have the energy to do it if I did and then I'd feel like I was missing out ... or if I'm relieved that I don't have the energy or desire to do anything because I wouldn't have anything to do or anyone to do it with if I did. Not sure it matters.

How do you maintain friendships when you can't do anything social?

I'm thinking about this because I'm feeling better and actually have a little bit of energy right now. I could:

  • MAYBE go to the gym for 25 min.
  • do some yoga at home
  • go out for something specific: a movie or theater show, if it was nearby or somebody picked me up
  • spend 30-60 min at a party if I could get home again right away afterwards

But just thinking about doing any of this (except the yoga) makes me tired. It would have had to be planned ahead of time. And I don't need to do anything. There's a kind of satisfactory balance to this, that's the only kind of satisfaction you can get from this illness.

Part of me dreads getting better, because when my will and desires come back with my energy (if they ever do), having nothing to do on a Saturday night will drive me crazy.

January 08, 2013

How to Stay in Touch with Friends When Sick?

Just had brunch with Praba this morning (at Brown Sugar Kitchen!) and it was the first time in a minute that I'd seen her. That's the suckiest thing about being sick: you don't have the energy to keep up with friends. And with Praba dealing with health issues too, it's even harder for us to keep up. (Although, I have to say, we keep up better than some well friends I know ...)

So we talked about how to maintain -- health, sanity, relationships -- and I told her about how I've been considering lately how to reach out to my friends in a way that actually works for me in this illness.

The first thing is to let everyone know that I'm sick and what the sickness is. What it does to me.

Then I have to figure out what kind of interaction I want with my friends. This is the big problem. Because I lose touch with people precisely because I don't have the energy to talk on the phone, or email, much less meet with them. I want to let my friends know that I need them to take responsibility for contacting me regularly, because I can't be relied upon to do that. But I'm not sure how capable I'm going to be of responding to their contacts.

Sigh. It's confusing. And difficult.

Anyone have any thoughts?

January 01, 2013

New Year's Resolution

I'm not sure why exactly, but reading GGP's account of his two-months' struggle with a rather mysterious illness has just kicked me in the ass a bit. I'm going to make an actual resolution for 2013 ... maybe two.

  1. I'm going to write in this here blog every week. I've been too unmotivated -- lacking in energy -- to write. But I'm going to do it, even if I have nothing to write about. And I'll write short.
  2. Get on top of this stupid disease: go to the Chronic Fatigue Syndrome clinic in Palo Alto. I forget what it's called. But I'm going to go. And I'm going to do what they tell me. And I'm going to try every stupid California new age acupusher thing that crosses my path.

August 26, 2012

Reading Update: Yes, I'm Still Alive, and Still Reading Urban Fantasy

  1. Naomi Novik Crucible of Gold
  2. The entire Patricia Briggs Mercy Thompson series (reread)
  3. Seanan McGuire Discount Armageddon
  4. Robin Hobb Assassin's Apprentice
  5. Robin Hobb Royal Assassin
  6. Robin Hobb Assassin's Quest
  7. The entire Carrie Vaughn Kitty Norville series (reread)
  8. Robin Hobb Fool's Errand
  9. Robin Hobb Golden Fool
  10. Robin Hobb Fool's Fate
  11. Holly Black Black Heart
  12. The Hunger Games series (reread)
  13. Kristin Cashore Bitterblue
  14. Patricia Briggs Bloodbound
  15. The entire Patricia Briggs Alpha and Omega series (reread)
  16. Faith Hunter Mercy Blade
  17. C.E. Murphy Urban Shaman
  18. C.E. Murphy Thunderbird Falls
  19. C.E. Murphy Walking Dead
  20. C.E. Murphy Coyote Dreams
  21. C.E. Murphy Winter Moon
  22. C.E. Murphy Demon Hunts
  23. C.E. Murphy Spirit Dances
  24. C.E. Murphy Raven Calls
  25. C.E. Murphy Heart of Stone
  26. Ilona Andrews Gunmetal Magic
  27. Ilona Andrews Magic Dreams
  28. Carrie Vaughn Kitty Steals the Show
  29. Saima Wahab In My Father's Country
  30. Faith Hunter Cat Tales
  31. Kalayna Price Grave Witch
  32. Kalayna Price Grave Dance
  33. Kalayna Price Grave Memory

Well, it turns out that I didn't post about this, but around the time I stopped posting again this past spring, I was diagnosed with Chronic Fatigue Syndrome. Please note, that this is the diagnosis, not the onset of the disease. The onset happened around December 2009.

So, around the time I got the diagnosis, I realized that I actually had a pattern established, and that the disease got worse in the spring and summer and better in the fall and winter. And that is, indeed, what happened again this year.

This year's edition of Summer Slump was both better and worse than the previous years. Better because, unlike the previous two freelancey years, I had a regular, go-to-work job at KSW, and there was no one else around to keep the org afloat, so I had to do it. So I was forced to stay active. Worse for the same reason: I was forced to stay active, so what little energy I had was spoken for, and even that wasn't enough, leaving less energy than ever before for taking care of myself.

You'll notice that I have a lot of re-reads here, and most of my reading has been re-reading or catching up on the latest installments of my favorite urban fantasy series. I think it's a good indicator of my state of mind. Simply no energy to try to handle new input, only rehashes of the old input.

No other commentary. It's too hard on my brain.

Oh, wait, one other thing: my short term memory has grown so bad, from the CFS, that rereading entire series is necessary before I can read the latest installment. Sad.

January 02, 2012

2012 Resolutions

Sigh.

There's basically only one: figure out this health thing and get on top of it.

That includes some sub-resolutions, though, including:

  • Talking to my GP this week
  • Trying out the gluten-free diet
  • Getting health insurance
  • Maybe visiting the Mayo clinic, if my hypothetical health insurance will pay for it
  • Getting acupuncture
  • Doing exercise every day, no matter what
  • Working on going to bed early and getting not only enough sleep, but the right kind of sleep
  • etc.

I'm so boring.

August 25, 2011

Not My Fault

Today is a Bad Day. I woke up with my alarm and knew instantly that I wouldn't get up. It took me two hours of dozing off and lazing around and cuddling with my cat. At times it felt a little luxurious, but mostly I just felt the fatigue: the mild exhaustion I knew wouldn't go away with more sleep; the minor fatigue that doesn't actually prevent me from doing anything in particular; that is like fog, that retreats in a vague diameter around you as you drive forward, but doesn't dissipate, and closes in behind you as you go.

It's taken me three years, but I'm finally learning to recognize the Good Days from the Bad, on a granular level. And I'm slowly learning to recognize that Bad Days are Not My Fault. When I started to really slow down three years ago, getting these waves of energy loss and occasional fatigue, I thought it was my fault. Of course, I was still drinking then, so I could blame them on the occasional hangover (although I was becoming surprised at how aging can cause you to get a hangover from one glass of wine.) I was also still drinking caffeine at that point, so I could treat the "hangover" with caffeine.

Three years and a myriad symptoms later, I'm through with the medical concept of blame. Being a lifelong chronic illness sufferer, I actually get blamed by my doctors for new symptoms less than most women. It's not the who's to blame game that I'm over, it's the what's to blame: which illness? Which condition? Which system? What can we blame this on? What is the single, root cause of your current suffering, and which drug can take care of it?

I've been seeing the evidence for thirty years, but it finally all came together for me earlier this year when I got dizzy again. I had started having dizzy spells in 2007 and was told by the ENT that it was most likely a virus that infected my inner ear and there was nothing I could do about it, only wait for it to go away. It did and I didn't think about it again until last year when I started getting dizzy spells again. The next ENT diagnosed it as BPPV, an easily treatable condition that you treat with exercises. I did the exercises, it went away. When I ask the doctor if maybe the previous bout was also BPPV, he laughed and said probably; they just diagnose the virus first because that's the protocol.

This was disturbing, but I didn't think about it until earlier this summer when I was hit with the worst allergies I've ever had ... accompanied by a return of the dizzyness. This time, the exercises didn't work right away, and it didn't matter anyway because I was so fatigued and sick-feeling from the allergies that the dizziness was the least of my problems. When the allergies cleared up -- lo and behold -- so did the dizziness. Then I remembered that the "BPPV" had also appeared around allergy time and disappeared as allergy season died down.

I didn't consult an ENT this time. Instead, I thought about it: what if it never was a virus or BPPV at all, but was always allergies? What if allergies had affected me the way a virus did, so it was essentially a "virus" after all? What if it was both a virus and BPPV? What if there were other factors? What if he only diagnosed BPPV because that's second on the protocol? Etc.

Upshot: the dizziness went away, but I still don't know for sure what the problem was and may never do so. The main point is that the dizziness went away, and if and when it comes back, I know it will most likely go away again, and I just have to manage it until then.

And the same thoughts can be applied to all my problems. There's probably more than just one cause for everything that's wrong with me -- given how many things are wrong with me. I can't wait for the savior diagnosis. I have to just live with what's going on now, and still have a life, even if things don't get better.

Sounds depressing, but it's actually heartening. It makes me feel stronger.

June 28, 2011

On Being Harassed in the Street

Up front I'm telling you that this is about Hollaback's "I've Got Your Back" campaign, to create an online and offline movement to end street harassment. I've donated and I hope you'll consider doing the same.

Boy, it's been a long time since I posted. Actually, the last time I posted was right around the time that I moved back to San Francisco. And I'm so glad to be back.

But I don't tell people that one of the reasons I'm so glad to be back in the city is that the amount of harassment I encounter has gone waaaaaay down. The main reason I don't mention it is that the reactions of many people break my heart. Too many people, upon being told in general that I get a lot of harassment, act uncomfortable -- with me! -- and don't offer me any sympathy, much less engage in any discussion. I'm talking about abstract conversations here, where there's no immediate danger, and all I'm doing is communicating.

It's so much worse, then, when the harassment happens in front of your friends or social circle and they do nothing or act uncomfortable with you, as if you were the one who had done something wrong. I know that those situations can be sometimes scary or emotionally heightened. But think about the general emotional orientation of someone who doesn't, when the scary moment is over, automatically offer help and sympathy to a friend who has just been verbally assaulted.

I mean, c'mon, people! How hard is it to say to your friend who was just harassed, "I'm sorry you had to deal with that," or ask her "are you alright?"

It's those simple offerings that can make the difference between you being part of the problem, and you being part of the solution. Either you kick a friend who's just been kicked, or you blow on her bruise and offer her salve. Why is that such a hard choice?

The immediate sympathy and help is key, but what's an even greater act of friendship is listening, discussing, and helping your friend to process the harassment, to understand it, contextualize it, and help render it less powerful. Treating your friend as a thinking, feeling adult who is capable of understanding what has happened to her, and capable of insight, is a really important part of being an empowered woman in a society that often treats us as meat.

And the greatest act of friendship -- and righteousness -- of all is intervening on the spot, and standing up to the harasser for and with your friend.

This last one -- standing up for your friends -- should be automatic. If it isn't, maybe it's time to think long and hard about how you were raised, and what choices you learned to make to survive. Yeah, I was a bullied kid and I threw other outcasts under the bus if it would save me ... when I was in grade school. But now I'm an adult, and every failure of mine to protect and support my friends when they are attacked is my failure, not theirs. And yes, as an adult I've failed many times, or been weak or stupid in my support. But I'm glad to say that there have also been times when I was mindful enough to succeed in supporting and backing up my friends. And I strive to be that person every day.

I'm thankful for those fierce friends of mine who have done all of these things: Jaime, Patty, Cyndie, Robynn, and others whom I'm forgetting right now. (There have been so many incidents over the years, and when I was younger I deliberately forgot about it when friends failed to support me, so I managed to also forget when they did support me.)

And I'm also remembering people who shall remain nameless -- some of them people I greatly respected -- who stood by and did nothing. And, though I forgive quickly, I'll never forget. As MLK said:

In the end, we will remember not the words of our enemies, but the silence of our friends.

You're not alone -- in being harassed, in feeling helpless, in not knowing what to do. But tackling street harassment as it happens in front of you is your responsibility, as it is the responsibility of every citizen of a free state.

Please donate to the Hollaback "I've Got Your Back" campaign, and start (or continue) to get everyone's back on this.

January 02, 2011

New Year's Resolutions for 2010

I've done this in the past: made new year's resolutions that I didn't keep. They were too ambitious. I'm going to do smaller ones, that are important, this year. We'll see how this works.

  1. Keep up with my bills. My credit score has gone down, ironically enough because I took steps to pay my bills on time. I used to pay all my bills a bit late. Not three notices late, but sometimes I'd get a late notice or something to remind me. Okay, not "sometimes" but often. So I Took Steps and put all my regular bills on automatic payment from my bank, so that I wouldn't have to think about them. And it worked. I mean, I didn't think about them. The regular bills were fine, but the non-regular ones started seriously falling by the wayside: doctor's bills and parking tickets especially. And those are the two that really don't mess around. So this year, I'm going to pay bills as they come in. No more letting them collect and putting them out of my mind. I'm sure my credit score will start rising immediately, and in seven years I'll be clear of this completely. Sigh.
  2. Exercise. Regularly. No benchmarks this time. No amounts or measurements. Just keep exercising. It's when I get ambitious and want to achieve something with the exercise that I get discouraged. Just get. to. the. gym. Doesn't matter when, doesn't matter why, doesn't matter what I do when I get there. Just go. Regularly.
  3. Finish the damn nobble already. No more fancy processes. No distractions by other projects. Butt in chair. Write. Finish it. This year.
  4. Get insulin pump by April. April is when my COBRA ends. If I'm gonna do it, I gotta do it by then. Maybe I'm still not committed to it, and if not, then I won't do it. I'm still very ambivalent about getting a pump. But I'll resolve intellectually to do it, and my gut (which is, appropriately, where I'll be carrying the damn thing) will make the decision.
  5. Be at peace. I know it's a lifelong, ongoing process, but I'm aiming for it now.

That's all. Maybe too ambitious. Maybe not enough. But we'll see what happens.

June 24, 2010

Depressed

Okay, I'm copping to it.

The last in a series of minor -- and correctable -- but relentless medical mishaps finally sent me over the edge and I'm now in full-blown -- if very mild -- depression. You can tell because I'm not blogging, and I'm not reading blogs. ;)

Things are in hand. I am Doing Something About It. But posting will be slow hereabouts for the foreseeable future. (I am still reading, and a constipated Reading Update will appear, eventually.)

Sorry.

March 29, 2010

No, You Can't

March 24, 2010

HCR

Slide12

"Wow, and that only took 18 years!"

September 22, 2009

Hear, hear! Save Big Insurance!

September 15, 2009

Domestic Violence Is A Preexisting Condition

I often act outraged when I'm really just angry. But this is outrageous. Call your representative today and tell them to do something about it. Public Option Now!

September 08, 2009

Can't Afford To Wait For The Public Option

I took part in this Moveon.org action about a week ago, in which they had folks take pictures of themselves with these signs saying who in their lives "can't afford to wait" for the public option. Then they made a video of it. If you watch all the way through, near the end you can see the truly unflattering picture of me I took. I'm bummed because I went with the unflattering picture because it was the only one out of about 25 I took that included the whole sign I wrote. Then they went and cut off the bottom of my sign anyway. But I guess it made its point.

Please call Congress today. Really, none of us can afford to wait.

July 24, 2009

Check In

Haven't posted in a while. Was thrown off course by having to track down a NEW health problem (because I didn't have enough already.) But have probably cornered the sucker (doing the test tomorrow.)

Then there will be a week of diminishing fear, a week of understanding the treatment, a few weeks of getting used to it, all coupled with getting back on track with my exercise program.

So maybe in a month's time I'll be myself again. Or I'll be something, anyway.

May 07, 2009

International No Diet Day

Damn! YESTERDAY was International No Diet Day, but I didn't hear about it until today. TODAY is Claire No Diet Day.

Just kidding. I'm just saying that because I went to the dentist this morning and, to reward myself, had a second breakfast at a favorite diner nearby. WITH a cheesy YA vampire book. Lotsa naughty.

I just wanna say a couple of things about dieting. First of all, there's nothing wrong with being on a diet. Any healthy eating regime is a diet, whether you're trying to lose weight, keep weight off, or just feel good. In fact, if you're overweight or obese and not trying to eat healthy, you're also on a diet ... just a really bad diet.

If you're alive, you have a diet ... you're ON a diet. It's the kind of diet you're on, the way you approach eating, and most importantly, your attitude towards eating, exercising, and feeling healthy that's at issue, not your diet.

I tell a tale of two friends. One had a mother with an eating disorder who put her on a diet for the first time when she was eleven years old. Years later I had to be careful not to ever initiate a conversation with her about food, exercise, or health. She would get a gleam in her eye, and start spouting the latest diet advice -- in great detail -- as if it were not only gospel truth, but also salvation. If she got a good head of steam on her, she could talk for hours about this stuff. But the details would change at least once a year, with each fad diet. And she never lost weight, because her problem wasn't really what she ate. Yet she continued, year in and year out, to pursue whatever diet fad was happening, and to talk like she believed in it. It was an item of faith. Also, she never really did exercise.

The other friend was dealing with some mental health issues and decided at one point to get healthy. Given her status as a member of American society, she had a lot of false notions about dieting and losing weight floating around in her head. At one point she told me (somewhat hesitantly) that she was trying to diet and lose weight. And she told me how. I gave her a few pointers (you know: make sure you're eating ENOUGH; eat more, smaller meals throughout the day to keep your metabolism up; trade out simple carbs for complex) in an effort to be genuinely helpful. She listened, tried them out. She also found a personal trainer and started going to the gym. Naturally, she lost about 40 pounds over the course of a year and kept it off for another year. She's still struggling with mental health and has had setbacks, but her attitude towards addressing diet and exercise was that it was all part of her overall health.

I'm sure all of you have a friend or acquaintance like the first one. This is someone you either avoid bringing up a particular subject with, or avoid completely. Their attitude to eating and weight is unhealthy, and uncomfortable. And they don't realize it. These are the people that No Diet Day is aimed at, the ones who think diets will solve their weight problem/problems.

Many of you may have a friend or acquaintance like the second one as well, although you might not know it. Usually when people get serious about getting healthy or losing weight, they don't run around telling everyone. They, like Nike, just do it. They'll talk about it a little with close friends, if they think those friends can help with advice or support. Otherwise, they keep it to themselves ... much in the way that most people keep the details of their family lives to themselves: it's nobody's business.

The latter type is the type of person who SHOULD be dieting: because they only diet when they've gotten unhealthy and overweight, and they only diet to get healthy again.

April 26, 2009

Oh Hillary, My Hillary


Hear motherfuckin' hear.

And you wonder why I love her.

April 17, 2009

On Bullying

While I appreciate efforts like this one to bring attention to bullying, particularly bullying that happens around homophobia and other prejudices, I think the organizers are still missing some essential points about bullying, how/why it happens, and how to stop it. (Not surprising: many very smart commentators are missing the point.)

"-Isms" like racism and homophobia are one issue, and bullying is an entirely separate issue. You can address an "-ism" effectively and still have terrible, soul-shattering bullying. (Likewise, you can stop bullying and still drive people to suicide with your prejudice.) The "day of silence" and similar efforts are doomed to only partial success, or outright failure, because they conflate homophobia (or prejudice) with bullying behavior, and assume that addressing prejudice among school-age kids will stop the bullying behavior.

It will not.

***
I was always an unpopular kid in school--precocious (put in school a year early), nerdy, outspoken, uncontrolled ... and multiracial. I was occasionally bullied in grade school, but I went to a small parochial school where everyone knew everyone. I was a nerd, but I was their nerd, and god help anyone from outside the school if they wanted to talk down to me.

So it wasn't until we moved to Ohio when I was ten that I encountered really bad bullying. The school was public, and bigger--30 kids per homeroom and two homerooms--and the neighborhood was all white except for us, one other Chinese family, and one other multiracial white/Japanese family. All the Asian kids were considered nerds. The boys started calling me names and harrassing me physically, and no one stopped them. So they kept doing it. Every day. All day long. For a whole year.

Now, when I say "no one stopped them," I don't mean that my parents didn't try anything. From what I understand now, they were on the phone to the principal almost weekly. At one point the school arranged to have one of those theater groups sent to our class to do a role-playing workshop around bullying. It was embarrassingly bad and actually helped me out only because for a week afterward we all spent our bullying time making fun of the theater group. No one (including me) connected the theater group to what was happening to me because their program was so divorced from reality that it didn't get any hooks into our actual behavior (the roleplay centered around taking someone's lunch money.)

At another point, the homeroom teachers suddenly introduced a new item into our curriculum: a family biography, in which we were to get our parents' help in writing a paper on where our families came from. Then a handful of us were asked to do a presentation in front of the class. Guess who was picked to do a presentation? And my family history is really very interesting, so everyone was interested and had a lot of questions for me afterwards. But it didn't stop the bullying because, guess what? The bullying had nothing to do with why I was different and everything to do with how my difference made me less socially powerful. Explaining why I was different was interesting for everyone, but didn't change the fact that I was less socially powerful.

In desperation, the school had me sent out of class while the assistant principal went up there and told the class point blank to stop harrassing me. That lasted about a week. Guess what happened then? When they started, tentatively, poking me again, and no consequences were forthcoming, we were soon back to a full-blown bullying schedule.

Early on in the year, the boys started calling me a "chink." That lasted for maybe two weeks and then stopped. I wasn't there when it was stopped, but in retrospect, I think some adult heard the boys calling me that, was horrified, and put an immediate stop to it. After all, racism was not tolerated at my school. At all. You really never heard any racial epithets at my school, very few racial jokes. Everyone revered them some MLK and Rosa Parks, which was made easier by the utter lack of any black people in a 10 mile radius of our neighborhood. So the "racist bullying" lasted for only two weeks and was effectively stopped. But the non-racist bullying lasted a year (until my parents pulled me out of the school) and intensified throughout.

No, they didn't need to call me a "chink" to make my life hell. They called me "dogie" when we sang cowboy songs in music class. They called me "Nebuchadnezzar" when we studied the ancient world. They'd just say my name in a really nasty voice. They didn't need to know why I was socially weak, they just needed to know that they could get away with tripping me, calling me names, spitting on me, pointing at me whenever somebody said the insult of the week. They just needed to know that the teachers and administrators didn't value my daily presence enough to punish, or even notice, the daily harrassment. They didn't need racism. They didn't need homophobia (early on, someone tried to call me a lesbo, but for some reason it didn't stick. I'm not sure if they were heard by a teacher, or if I was just so not bothered by that that it wasn't worth it. In either case, they didn't need it.) All they needed was to not be stopped. And they weren't.
***

Bullying is no more or less than a person or group of people with social power, expressing their social power over a person or smaller group of people with less social power. Bullying requires two conditions only:

  1. A social hierarchy in which varying degrees of social power are delineated;
  2. An immediate community in which bullying is considered acceptable.

If you have a situation in which both of these conditions exist, you WILL have bullying, regardless of the prejudices or social enlightenment of the group. A group of all white, straight boys, for example, who have been raised to tolerate racial and sexual difference will still bully within their group if the two conditions exist. Bullies do not need an "-ism" as an excuse.

The first condition is impossible to combat. Human beings of all ages will find ways to create social hierarchies. If you make kids wear uniforms to prevent them from using wealth as a measure, then they will structure the hierarchy not around what clothes you wear, but how you wear your clothes or how you behave. The socially powerful will set trends in how to color on your shoes with magic marker, or how high to roll up your pants cuffs, or which lunch dishes to eat and which to treat with disdain.

It is utterly pointless to try to dismantle hierarchies of social power. But you can change the way the hierarchies work, to make them livable. There are two things you can do: one is to create smaller social units (smaller homerooms, or mandatory club membership) so that every individual belongs to a unit small enough that their participation is necessary, and therefore valued. The other is to make sure that every member of each social unit has a role in the social unit that both suits them and is recognized as valuable by the whole unit. (For me, it was art. When my class discovered that I could draw well, suddenly I had my place and a small amount of respect. A couple of classmates actually commissioned me to paint portraits of their pets.) The powerless will still be low on the hierarchy, but they will not be considered expendable, and they will have a small measure of social power that they can leverage to negotiate better treatment.

The second condition is what really needs to be addressed, though. It is both mutable and extremely difficult to change. When a community decides that a certain type of behavior is unacceptable, and imposes consequences for that behavior, the behavior stops immediately. Look at how quickly the racist bullying was stopped in my case. My community had a huge stake in not seeing itself as racist, and would go to great lengths to stop the appearance of racism.

They didn't have any stake in stopping bullying, though. In fact, I think they relied on bullying, as most American communities do. Because societies rely on their members buying into conventional behavior to maintain stability. There aren't enough police in ANY society to patrol all unconventional behavior. Stability is achieved by getting people to police themselves. This can be difficult if you have to convince individuals to adhere to convention with good arguments and rewards. Punishing unconventional behavior is much easier. Bullying is the quick 'n' dirty version of policing the borders of conventions. The bullying punishes the worst offenders, and serves as an example for those who might consider straying. It's easy to do: just step back and let the bullies do their work.

And they will, because the socially powerful have many ways to express their power, and will use them all if left to their own devices, exercising power by:

  • using their social connections to connect disparate groups to each other (networking) or make resources available unilaterally (thereby making themselves indispensible to everyone);
  • selecting an elect group and rewarding that group with privileges;
  • offering their friendship as a favor to those of lesser status, and
  • withdrawing that friendship at their own whim to show that they can;
  • occasionally offering privileges to the whole community as an exercise of noblesse oblige;
  • setting activities and agendas for the whole community, particularly if they're fun or rewarding;
  • selecting an ostracized group and forcing the whole community to ostracize them;
  • squashing challenges to their authority on an individual basis, or empowering proxies to do so;
  • etc.

Only some of these exercises of power lead to bullying. There's no way to stop the socially powerful from being powerful or from exercising their power. But a community CAN get together and stop the bullying that results; i.e. certain exercises of power can be made unacceptable. This requires that the entire community be able to see the advantage to them of stopping bullying, and that the entire community participate in imposing consequences on bullies.

I don't recommend addressing bullying as a whole phenomenon, because it is so misunderstood. The simple fact that people still call bullying "teasing" is a testament to how misunderstood bullying is.

"Teasing" is to "bullying" as "sex" is to "rape."

Teasing is a general term for a method of communication -- a type of mockery that people use in social situations. Sex is a type of intercourse between people ... essentially a way of communicating or being together, or an activity that people share socially. Bullying is abuse that often leverages a kind of mockery that is similar in form to teasing. Rape is a violent crime that leverages sex as a method of coercion and humiliation. Just as rape uses sex to commit violence, bullying uses mockery to commit abuse. The point of both is an expression of power by the bully or rapist over the victim.

I think if you'd asked my bullies why they bullied me they couldn't have given you a terribly articulate answer. It wouldn't have had anything to do with race in their minds, although, of course, race is always a factor, especially in a neighborhood where the only people of color just happen to be the outcast nerds. No, they would have told you that I was a nerd, or a geek, or stupid, or didn't know how to behave. They would have a thousand ways to say it: I was was beyond the pale. What pale, they probably still don't know. But they could zero in on my, and everyone else's, relative power in our shared community. And I had the least power.

And if you ask kids at one of these homophobic schools where kids are bullied for their sexual orientation--or their perceived sexual orientation--you'll get a hundred variations on "he's a fag!" as a reason. But listen to the tone, watch the body language. The problem is not that "he's a fag!" What they're really saying is: "Because he's weak! Because I can!" And because no one has stopped them. Put a really effective gay-straight alliance in place and people will stop calling people "fags" and "lesbos." But the bullying won't stop.

I think, rather, that bullying has to be addressed piecemeal: by breaking up bullying into component parts and addressing each individually. Break it up into a set of rules that don't mention bullying, for example:

  • No name calling: of any kind. This includes making fun of people's names. Online or off.
  • No mockery of your peers. Online or off.
  • No ganging up on people. Online or off.
  • No practical jokes. Online or off.
  • No poking, pinching, hitting, kicking, punching, tripping or any kind of physical violence.
  • No spitting, squirting, or otherwise throwing anything on anyone.

If this sounds overly restrictive: it is, in a way. But it's very clear: these are the things you don't get to do. Find another way to be social with your peers. And it's very clear for the adults who monitor kids, too: you see one of these behaviors, you cut the kid from the herd immediately and put them in timeout. In two weeks, all those behaviors will stop. Most people can't imagine kids socializing without these behaviors because they've never seen kids (or sometimes, adults) socializing without these behaviors. But I have.

When my parents took me out of the bullying school and put me into an (expensive, private, all-girls) school, I found myself for the first time in a community where bullying was utterly unacceptable. No one called me names. No one mocked me. No one ganged up on me. No one played nasty practical jokes on me. No one poked, pinched, hit, kicked, tripped, spit on, or threw things at me. And I was still unpopular, I was still an outcast. People still had plenty to do and plenty to say to each other, and were still very clear on the fact that I was beyond the pale; weird; ridiculous, nerdy. No one said anything about it. They didn't have to. When I said something nerdy, people nearest me would roll their eyes and then move quickly on to the next topic, excluding me. If I tried to join a more popular group by standing or sitting near them, they'd ignore me. If I got too close, someone would glare at me or ask me directly what I wanted until I went away. My position hadn't changed. The only thing that had changed was that I wasn't being abused.

It took me two years to recover from that awful year of bullying; two years to not wince when someone asked me what my name was, two years to stop cowering away when someone approached me; two years to start trusting my teachers enough to do the work they asked me to do; two years to feel like life was worth living again. And during those two years, I had no friends. But what I had was peace. I had quiet. I had a chance to recover. And two years later I started making friends and collecting social power, and a few years after that I had put myself beyond the power of bullies forever.

I hadn't put the racism behind me, though, or the sexism. I still had to deal with that ... in fact, the more social power I had, the more people wanted to be around me because I was cool now, the more I had to deal with their prejudices and misconceptions and fears. But I was able to manage the -isms myself -- find a group of people like me, study and understand the phenomenon, advocate for my racial group (or for women) -- because I had social power and personal confidence as a result of being taken out from under bullying behavior.

****

Now, none if this is by way of saying that prejudice shouldn't be addressed early and often. You can stop bullying without addressing prejudice, but then you'll still have an active prejudice that will come out in other ways. Even if a gay teen isn't being actively bullied, that teen can still be ostracized, ignored, earnestly told that he is immoral, wrong, or bad, told that his very being disappoints his parents and embarrasses his family, and generally put into such extremes of cognitive dissonance that can cause depression, suicidal tendencies, and the like. Bullying isn't the only social behavior that kills.

I'm just saying: recognize the difference. Prejudice is one thing, bullying is another. Address them separately if you want to get rid of both.

April 13, 2009

Weekly Roundup: April 5 - 11

Okay, I'm calling it: Life has jumped the shark. Suddenly, everything's been about Charlie? The whole thing has been about getting Charlie into whatever their organization is? Please. Oh, and also, now he and Danny are oogly over each other? Because she was in danger? There's nothing like a damsel in distress, right? Am I right? And he's the perfect ... cop, gangster, guy, whatever? You can't hold him cuz he can kill you with a karate chop to the throat? Too bad none of the rest of those fools who do time have learned that jailhouse trick. Argh. Stupid show.

Food poisoning this week. That was fun. Sad thing was, I was so doped up from illness that I actually got two good nights' sleep.

Then I went in for a sleep study. Very weird sleeping in a hotel room with about fifty wires glued to my skull and chest and four down my pant legs, plus elastics around my chest and waist. Very creepy. But maybe I'll get to sleep right now. Here's hoping.

Got through another season of The Wire. Now I'm just waiting for season five to show up in my mailbox. Omar is definitely still my favorite character.

Posted about Koreatowns on atlas(t). So I live in Oakland Koreatown now. Whatever.

Two birthday parties this weekend. Fun.

I'm reading Proust Was a Neuroscientist, a birthday gift from Pireeni. I'm not throwing it across the room so much as writing "dumbass!" in it frequently. The dude is a good popular science writer but he doesn't seem to understand how novels work at all. Will have more to say about it when I finish the book.

Went for a walk in the Oakland hills this weekend with Jaime. Very beautiful in springtime. Didn't know there were so many colors of green. But part of one path was along a very steep cliff and had a near panic attack. Funny moment during the worst part when we had turned back and I was talking myself through it: "It's okay, you can do it. It's not a problem. It's okay. You can do it ..." and then a dude came barreling towards us on a mountain bike and I almost lost it. Weird that it was bad when the cliff was on my left side, but when we turned around to come back and the cliff was on my right side it was much, much worse.

I'm putting together a carnival of 300-word Asian American immigrant stories for API Heritage Month on Hyphen blog. This is also to celebrate the 20th Anniversary of the publication of The Joy Luck Club. The idea is to get non-Joy-Lucky immigrant stories. Here's the link.

Also, the Carl Brandon Society's API Heritage Month book list will be the same as last year's. Here's that link.

And posted a review-ish piece on the current 21 Grand show on KQED. Here's the link.

April 05, 2009

Weekly Roundup: March 29 - April 4


My folks were in town for a while but left this week. And I've been having trouble getting to sleep, which is making me tired and bad-memoried.

I had to scramble to finish my Asian American women profiles for Hyphen blog this week, before Women's History Month was over. It was a good project, but a lot of work. I asked the readers for suggestions, and most of the suggestions were for artists and writers, which tells you what kind of readers we have, but wasn't terribly helpful. So I had to curate the profiles for age, ethnicity, and field of endeavor. That also meant I had to do some research to actually find a range of women to profile. But I'm glad of the result. You can see all the posts here.

By the way, I'm going to be asking Asian Americans to send in 200-word family histories for me to post on Hyphen Blog for May, which is API Heritage Month. Spread the word!

Also, currently working for Kaya Press and putting together book tours for Australian novelist Brian Castro and Japanese documentary filmmaker Kazuo Hara. We've been watching Hara's films lately, and I have to say, although I would never have sat through one otherwise, I'm glad I was forced to: this guy's a genius. For writers out there, you HAVE to see A Dedicated Life (which you can get on Netflix). It's a documentary about a Japanese novelist, famous for one particular book, who used to be a member of the Japanese communist party and was excommunicated for kicking off his novel writing career by writing a book criticizing it. But that's not what the film is about. The film, an amazing 2.5 hours long, is about narrative and how people build their lives. That's all I can tell you, because it's the kind of film that does what only film can do ... so you can describe it. Watch the film and if your jaw isn't on the ground after the first half hour, and STILL on the ground two hours later, I'll buy you dinner.

I didn't really like his Goodbye CP, which I think was his first film, and which is basically about forcing the audience to watch endless footage of people with cerebral palsy moving through public space and being ignored by others. But definitely see The Emperor's Naked Army Marches On, which is about a super-crazy protester in the 80's who tries to kill his former WWII commander for reasons best understood by watching the film.

Katherine Mieszkowski, probably my favorite writer at Salon, has an article about a couple in Berkeley who acquire most of their stuff by scavenging. It's really interesting and has some tips for down 'n' out East Bay Areans. The irony here is that this couple has written a book about scavenging, which you have to buy new, because presumably most people who buy it aren't going to toss it out.

My friend Jaime said last weekend, after the funeral of the four Oakland policemen, that he thinks a city can reach a point where its reputation is just broken, and there's no coming back. I've been watching The Wire on netflix these past few weeks, and Oakland feels like that right now: broken beyond repair. The anger that Oscar Grant's killing unleashed was one side of the violence coin -- and the police DO have a lot to answer for, over the years and right now. But these killings are the other side, an indication that when violence gets this out of control, no one is safe. The one thing everyone can agree on is that Mayor Dellums is an asshole. The feeling in Oakland right now is sadness just on the edge of despair; there's no real anger, just shock. And the violence continues.

I saw the William Kentridge show at SFMOMA last weekend and highly, highly, HIGHLY recommend it. Don't wanna talk about it right now, though. Also saw the Nick Cave show at YBCA. Candylicious!

And I've started revisions on Draft 3 of da nobble. And started writing dates with other writers. If this works out, I might have a way of sticking to it. I have to get this sleep issue resolved, though, because I don't have much brain power this week.

Saw Amber Benson, who played Tara on Buffy, on BART last weekend. At first I thought she was someone I knew down the way, so familiar did she seem. I stared a little, but tried not to bother. She was with a group of geek girls, which is cool.

Been watching the first season of 21 Jump Street on Y*O*U*T*U*B*E. Yeah, it's cheesy (the music is truly horrible), but the storytelling is actually pretty decent. I remember LOVING this show back in the day: it started the year I went off to college. I was still seventeen when I first went: still a teenager in a lot of ways. So I watched it off and on until Johnny Depp left. The gender and racial dynamics are so clear in this show, it makes me understand the 80's much better. Holly Robinson's character is the only woman on the force (there are no female extras in uniform). She's depicted as being just as capable as the men ... but she never has to fight anyone. Whenever there's a shooting or an accident that she's involved in, all the men get this look of concern on their faces and touch her shoulder and ask if she's alright. God, I remember that.

As far as the racial dynamic goes, the only black characters on the show so far are bad guys, except for Robinson and the captain. There's even one episode where a rich white kid gets hooked on smack and is forced by his black dealer, also a teenager, to rob stores to pay for his dope. The black dealer gets put away and the white junkie gets off scot free with no explanation. Everyone feels sorry for him. And yet, there's some sophistication in the way the individual characters interact racially. In the pilot, Johnny Depp's character is surprised that Holly Robinson's character owns an MG. She laughs at him and asks him if she should have a pimpmobile instead. No pretty-boy cop-show hero nowadays would ever be allowed to make racist assumptions like that.

Pireeni gave me Proust Was A Neuroscientist for my birthday (very belatedly) and I've started reading it.

Will do a sleep study next week.

That is all.

January 08, 2009

Update On 2008's Goals 'n' Objectives

Before I really get into this, I should mention that I spent most of 2008 in a mild depression. I won't get into why, but I'm not ashamed of it and think that people should be clear when they're in a depression that they are (or were, in my case, I'm out of it again, thank oG) depressed. It helps for other people to know. I was depressed from about Sept 2007 to March 2008 and then again from June 2008 until November. I snapped out of it at the end of November and am going strong now.

So I was actually unable to fulfill many of my goals for this very specific reason: writing was mostly out because of it, and exercise was iffy. But here goes:

  • Get writing again. This is the big, important one. The goals are more immediate:
    • full draft of a new short story every month
    • completed first draft of the YA fantasy
    • completed second draft of da Nobble 

Okay this is a tricky one. I DID get started writing again in March and made some serious headway on da nobble, but got stuck again around June-ish. But by rearranging my work plan, I finished the second draft. Also in the spring, I wrote the initial pages and notes for a new novel. But then, of course, got stalled. Only drafted one complete new story -- in fact, I only came up with the one new short story idea. Did ZERO work on the YA fantasy, which may be dead.

  • Read more challenging and inspiring material. In 2007 I read a shitload of YA. Deliberately. And I'm glad I did ... but I kinda feel my muscles atrophying, and I have a pile of grown-up books waiting for me. Also, nonfiction, hello?

Spent a large part of the middle of 2008 doing re-reads and reading fantasy and YA series for escapist purposes, so no, not "challenging."  But I did read a bit more nonfiction and a few more books specifically for analysis purposes, so I did head in the general direction of this goal.

  • Get on the insulin pump, which will definitely happen. I've taken the first steps already and the thing will appear in January most likely. 

I got stalled by a hoop my insurance wanted me to jump through and then the depression got me. Made some strides, but they're void now and I'll have to go back and make them again this year.

  • Work the blogs. This blog you are reading is easy, because when I don't feel like doing a big, long post about something challenging, I can do my equivalent of catblogging. But that's boring for me and you. Plus, I've figured out the difference between atlas(t) and atlas(t): Galleon Trade Edition, and I want to work both. 

I did get started again on atlas(t) and decided definitively to kill Galleon Trade. I also started a new, paid blog and did a good job with it, I think. But then, I got stalled on my personal blogs, and then got started again. Did a LOT of political writing on this blog, which I'm proud of, but I also think I alienated a lot of people with it. Unintended consequence. So, again, sort of.

  • Get fit. I.e. exercise five days a week, minimum twenty minutes. No other goals there, because apparently, this is challenging enough. 

I tried. I managed to do some exercise most weeks, although certainly never five days a week.

  • Lose that 15 pounds. It really just slides off when I eat right, so the key to all of this is wanting to eat right, which means handling stress better. Which relates directly to the above objective and the three directly below. 

Lost it, got depressed, gained it back.

  • Get regular massages. 

Yes! I actually met one of my goals!

  • Go dancing regularly. 

No, not at all.

  • Regular dinner parties, game nights, and other relaxing, small social events at my house. Yes.

No, in some ways I did less of this, and in some ways, I did a bit. But my couch broke in June and I didn't get it fixed (part of depression) and it was a convenient, but also unavoidable, reason for me not to entertain. It's getting picked up by the upholsterer on Monday (no shit) so that excuse/reason will be gone after next week. Yee haw!

So I have to say, I'm not as badly off as I thought I was. I did make some headway on most of my goals last year during the times that I was able. When I was disabled by a (mild) depression, I still struggled, and I took steps to address the depression (mostly by getting the massages, still trying to exercise, and finding a shrink finally.) So I'm actually ... proud of what I was able to do last year, although bummed that I took such a hit, moodwise.

So next post, I'm setting goals for 2009, since -- on this reflection -- it DOES seem like goals-setting is worth my while.

November 01, 2008

NaNoFiMo & Diabetes

Hey chicks 'n' chickens! It's November!

It's National Novel Writing Month, National Diabetes Awareness Month, and National American Indian Heritage Month. All three.

For National American Indian Heritage Month I have a book list fer ya, which will follow in the next post.

For National Diabetes Awareness Month, I pledge to find out three new and important thing about diabetes (Type One) and post about them.

And (drumroll please) I will be half-assedly participating in NaNoWriMo, but, as usual, in my own imitable way. Namely, I will be using this month to knock off my To-do list for draft two (or draft three?) of da nobble. Call it National Novel Finishing Month or NaNoFiMo. To wit:

  1. I have 15 "short fixes," things that should only take a few minutes to an hour or so.
  2. I have 17 "medium fixes," things that'll take a whole day.
  3. I have 9 "long fixes," things that require me to rewrite whole sections, or change the style of a narrator's entire text.

So my pledge is to do one short fix and one medium fix every day until they're done. That'll leave 13 days for the nine long fixes. I'll try to knock off one long fix every day, but we'll see how that works out.

That's the plan, Stan.

October 13, 2008

Fat Talk Free Week!

The video above is an ad for "Fat Talk Free Week," which begins TODAY! Yay!

Fat Talk Free Week (click link for info) is a week during which you don't "fat talk," that is, you don't say how fat you or other women are, you don't focus on your appearance, or talk about eating or exercising in terms of how they affect your appearance.

Sound easy? It's harder than you think. One of the sentences the ad identifies as "fat talk" is "You look great!" And I did have to stop and think about that one. But really, think about the last time you said that. Did you mean, "wow, you look like you've lost weight!"? Did you mean, "wow, that dress makes you look ten pounds thinner!"? The last time I said it, I meant, "Wow, you look happy! I didn't realize how depressed you've been looking until I saw you looking happy just now!" but almost always before that I meant, "wow, you look like you've lost weight!"

I'm actually pretty good about not fat talking, but I'm very bad about fat thinking, so here are some things I'm not going to do this week:

  • pinch up my belly fat and shake it disgustedly
  • hang on to those pants I've never worn that are too small for me
  • buy that fall jacket I wanted that's too small for me because I'm going to lose the weight ... one of these years.
  • stand on my scale.

Here's what I'm going to do instead:

  • exercise every day this week, because it makes me feel good.
  • make sure those superfoods are in my shopping cart, because they make me feel like I'm taking care of my health.
  •  fast tonight, so I can go in tomorrow and get those tests done that I've been avoiding. I'm getting blood drawn tomorrow, people! Wild horses and procrastination shall not stop me!

How about you? What are you going to do this week?

Via. Crosspost.

May 28, 2008

Rachel Moss and the Legions of Hiding Assholes

Those of you who haven't yet heard ...

there's an internet brouhaha going on over a girl -- word used advisedly -- named Rachel Moss, who went to WisCon and posted a con report on Something Awful with pictures of mostly fat and transgendered participants, taken without permission, making fun of these people for their non-normativity. She apologized, then took her apology back. She took her post down, but someone else put it back up without her permission and a dogpile of cretins jumped in to finish the work. By the time they were done, they pulled WisCon photos off of Flickr to add to the mess, making fatphobic, transphobic, ablist, racist, and generally misogynist comments about a wide variety of individuals, many of whom are my friends, and all of whom are at least nominally my allies, by virtue of being WisCon attendees who treat others with the modicum of respect required for this Con. There's a link to a mirror of the original post at Angry Black Woman, who is also calling for people to post about this and make sure Rachel Moss' name is well connected to this on the internet.

I don't care about Rachel Moss -- the culprit here -- and I'm happy to see her banned from WisCon, but I'd be just as happy to see her show up again and get snubbed and hissed as she deserves. I doubt very much she'll even try to come back. Apparently she's on the public (blogging) record as having an eating disorder of her own--bulimia--which makes this attack both more understandable and more disgusting. I'd ask that no one who comes through this post attack Rachel Moss for her eating disorder--that's her problem--but rather for her unacceptable behavior regarding WisCon.

I have the advantage of having been an extremely close friend for 18 years of a woman who suffers from Cushing's Disease, a disease that affects women disproportionately, and that actually makes women fat. I got to see her develop from a physically healthy and average-sized petite 20-year-old into an obese woman in her late twenties, without any "normal" reasons for the change. I got to watch her fight misogynist doctors and careless HMOs for over a decade before she could get someone to diagnose her with the often fatal disease she already knew she had. I got to see total strangers casually call her "lardass" and suchlike on the street, dropping bombs on her when they weren't even in a bad mood (I get the bombs usually when the bombers are in a bad mood), simply because that's what you do with a fat woman.

 

And we're talking about a woman whose obesity was very definitely not "her fault."

But then I've also gotten to see in close friends the effects of early abuse and early eating disorders pushed upon them by family members (I tend to think pushing eating disorders on a child is abuse, but the abuse I'm talking about was often from someone else, and far more serious and devastating than even eating disorders). If these people "made themselves" obese by overeating, what person who knew the kind of childhood they had, the kind of families they have, could possibly blame them or say that their eating was their own fault?

And who the fuck are these people to take it upon themselves to decide that someone deserves to be openly hated -- and to hate themselves -- for a body that they did not choose? Thinking about it makes me want to cry in a way that thinking about all the bullshit that actually touches my own life --- the racism, the stupidity about multiraciality, the neverending aggression I get from men for being tall, and all the put-downs I've had from misogynists --- does not make me want to cry.

My feminism, my antiracism, my refusal to allow total strangers to get me to agree that my tall woman's body is abnormal, all of these empower me. But watching fat people get smacked down makes me want to cry because while most of me is an ally, a small part of me still tugs me towards the smack-down crew, and how can we fight this when I'm also the enemy?

There's still a little voice in my head that agrees with such awful people as Rachel Moss when they say awful things about fat people. I've come close many times to stomping that little voice out, but it's a tough one. It's the same voice that tells me I'm fat, but it's okay as long as other people are fatter. I know a lot of you out there know that voice, even if you won't admit it.

Rachel Moss knows that voice, only she has completely failed--if she ever tried--to stomp it out. She's let that voice take over, and it's a monster's voice. That's what she's turned into for the time being: a monster, who's projected her hatred of her own body onto the bodies of others, to get some relief. Who can really doubt that that's what's happening with women who hate on fat women?

And who can doubt that that's what's happening with women who hate on disabled people? I read the blog of a friend every day who posts about how much pain she's experienced that day and whether or not--and for how long--she was able to stand before having to resort to her wheelchair. Her blog strikes me dumb because nothing I experience puts me in such physical pain and I can't even properly imagine it. And some ... god I don't have bad words enough to express it, let me resort to other languages ... some turtle's egg, some drecksau posted a picture of her in her wheelchair and called her a "cripple" and someone else hoped she'd get cancer and undergo chemo so she could cosplay Charles Xavier.

I'm actually crying with rage as I write this. I don't think I can dig deeper into the comments on that post to find the extraneous shit. So far they've turned a picture of a (black) friend of mine into an icon with the tag "100% N*gger" on it, hoped that a Muslim woman's head gets chopped off, and ... I'm not continuing with this filth. Who are these people? And will someone who knows how to do this please let the rest of us know how to get them kicked off the social networking services they're using so we don't have to hear about their shit anymore?

But all you need to know about shame and cowardice is that every one of those losers posting in comments is hiding behind a username and icon, and every single one of the women they are making fun of is out in the open on the internet.

I'm closing comments on this post because I'm just passing the word on.

May 13, 2008

Register Your Bone Marrow!

Hey all, somebody else needs a bone marrow transplant.

Actually, a LOT of people need bone marrow transplants. Bone marrow is much harder to match than blood, and it's much likelier that someone will find a match with a donor from their own racial or ethnic group.

But people of color don't register as bone marrow donors in the same proportions as whites. So people of color with leukemia tend to get screwed. Mixed race people especially tend to get screwed.

I'd do it, but my diabetes prevents me from donating just about anything. So instead, I'm passing on the word, hoping that some of you will step up and do it for me.

If you're a person of color, you can get a free testing kit. Click here to register, no matter what color you are!

February 21, 2008

A Letter to the World About My Body

Dear Everyone Who Isn't Me, and Especially the Wonderful Women of BlogHer,

I want to participate in your Letter To My Body project. I really do. I think it's wonderful.

But in trying to compose a letter to my body I realized something: I don't see my body as separate from my self. Presumably here, "self" is mind, while body is some sort of symbiotic adjunct. I don't pretend to understand mind/body split. All I know is that when I say "I," and when I say "me," I mean, in both cases, my body + my mind + my soul, if there is such a thing. My "self" is something composed of all the things I put "my" in front of, and my mind is no more--or less--connected to my self than my body.

This is not because I am Special And Better Than You. I live in this fucked up western youth and beauty obsessed culture, too, and I'm not all that strong-minded. Just ask my container of cornnuts.

I think it's, very simply, because I am a type 1 diabetic. Diabetes shares with other chronic, incurable illnesses a number of traits, and a great many effects on the psychology of the sufferer. But one thing I think is unique to diabetes (I say this in all ignorance; there could easily be other diseases with similar traits) is that the disease enables many diabetics to track the effects of eating and exercise--the twin bugaboos of skinny-bitch culture--on their bodies and minds in real time, and gives them the tools to control these.

I won't go into the details of why (I might at another time); let it suffice that diabetics under a regime of insulin therapy can feel amplified effects of eating various foods, or not eating enough food, or exercising too much or too little. These effects are felt immediately, in a matter of minutes or hours. And, most importantly, these effects work immediately on the brain functions, so that a diabetic's mood, rationality, even intelligence, memory, and problem-solving abilities, can change literally minute to minute depending on food intake and exercise.

When my blood sugar goes down, it's not "my body" failing "me," it's me fucking myself up. My mind disappears with the failure of my body. I literally lose the part of me that people seem to most consider the "self" when my body crashes. I don't see mind and body as dependent upon one another or arising out of one another. They are the same. They are two ways of talking about me.

You may not see this in diabetics who got the disease during or after adolescence, and you may not see it in teen girls whose parents underscore society's body-image lesson. But I got sick when I was eleven. I was a late bloomer in any case, and eleven for me was hardly even "tween." My first experience of body-consciousness was the disease and its management, not fat and boobs and periods and sex.

Sure, I thought I was fat all through my teens and into my mid-twenties, when I smoked so much that I got really, really skinny. But I never got into the habit of doing anything about it, because the consequences of crash dieting and excessive exercise (insulin shock) or of not taking my insulin (which helps you put on weight) were so severe and unpleasant that I would simply rather be "fat" than have to live like that, day in and day out.

Don't get me wrong. Just because I consider my body's "flaws" in the same way I consider my personality flaws, doesn't mean that I haven't hated myself, and don't still hate myself often and often. I do hate that my thighs are fat. I don't like my legs, period. I really, really wish that that roll around my waist would go away. In fact, the moment a fad diet appeared that spoke the language of diabetes, I jumped on that wagon train and am still riding it.

I smoked heavily for well over a decade, and still smoke a little now and then. I used to drink like a fish, and still tie one on when I feel I can get away with it (I usually can't). I pig out. I do recreational drugs, when I can get them. I avoid exercise. I do all sorts of self-destructive things, still.

But when I diet, I'm not punishing my body, I'm punishing myself. When I struggle to control my diabetes, I'm not fighting my body, I'm fighting the diabetes.

I am my body, so the struggle is not against my body but against myself. It can be a subtle distinction sometimes. But at other times it's a huge, honking distinction.

It can be a bad thing. Because I don't objectify my body, I dress and groom to express my mood to a much greater extreme than most of the people I know. So I'll often mismatch the occasion, or go for two days without showering, or fail to wear makeup in formal situations and then go all out with the eyeshadow to go out for a beer. Other people seem so much more able to look better than they feel. I'm getting better at this, but it's hard to look like something I don't feel.

But it, of course, can also be a good thing. Because when I feel good about something smart I said, I feel good about my body. When I feel good about some beautiful prose I wrote, I look beautiful. When I manage to be kind to someone I don't have to be kind to, my shoulders relax. I don't live split in half.

Like right now, just now, when I was thinking about writing a letter to my body, and I peeled my mind away from my body for a moment and I did not at all like what I saw.  My body, apart from "me" is just a collection of failures. I hate seeing photos of myself for this very reason. I don't know how to pose for pictures. What I look like is in motion, because my mind and body are always in motion. You can't freeze a frame of that and get a true picture of me.

I don't think I've ever put this into words before. I've just never been good at participating in girltalk about bodies. My answer to "if there was one thing you could change about your body, what would it be?" is, of course, "take the diabetes away." But if you changed that, I wouldn't be me. Even that is me.

I've always been discomfited by this line of talk, and always thought my uneasiness was just political. But it's not. It's personal. I just don't think this way, and the project of trying to heal your mind/body split by underscoring your mind/body split seems like the wrong tack to me.

Talking to your body as "you" rather than "me", making two of one, won't make you love the putty that is your flesh any more than you already do. Hell, I have terrible trouble loving myself, and my every grain of flesh is animate.

Just wanted to try to articulate that.

Love,

Claire

January 01, 2008

2008 New Year's Goals 'N' Objectives

I'm not doing resolutions for 2008 because the word has too much of a "giving up for Lent" connotation. I'm going to do goals and objectives instead. That's less foreboding. (Plus, does the world really need another "why I don't do resolutions" post? If you don't do resolutions, then not-do them in silence!)

2008 Goals and Objectives, with subclauses:


  1. Get writing again. This is the big, important one. I really didn't write at all in 2007, beyond some blog posts and revision on already drafted stories. Some notes and story ideas. That's all. No substantial work on da nobbles and no complete new stories generated. That's the objective. The goals are more immediate:

    1. full draft of a new short story every month

    2. completed first draft of the YA fantasy

    3. completed second draft of da Nobble


  2. Read more challenging and inspiring material. In 2007 I read a shitload of YA. Deliberately. And I'm glad I did ... but I kinda feel my muscles atrophying, and I have a pile of grown-up books waiting for me. Also, nonfiction, hello?

  3. Get on the insulin pump, which will definitely happen. I've taken the first steps already and the thing will appear in January most likely.

  4. Work the blogs. This blog you are reading is easy, because when I don't feel like doing a big, long post about something challenging, I can do my equivalent of catblogging. But that's boring for me and you. Plus, I've figured out the difference between atlas(t) and atlas(t): Galleon Trade Edition, and I want to work both.

  5. Get fit. I.e. exercise five days a week, minimum twenty minutes. No other goals there, because apparently, this is challenging enough.

  6. Lose that 15 pounds. It really just slides off when I eat right, so the key to all of this is wanting to eat right, which means handling stress better. Which relates directly to the above objective and the three directly below.

  7. Get regular massages.

  8. Go dancing regularly.

  9. Regular dinner parties, game nights, and other relaxing, small social events at my house. Yes.

This is more modest than last year's set, but very similar, because, basically, I'm the same person with the same desires and ambitions, which I made no progress on fulfilling last year. Argh.

Happy New Year, all! Please post links to your own resolutions so I can compare and contrast. And then feel badly about my lack of ambition or lack of realism.

November 30, 2007

Diabetes Videos: Good, Bad, Ugly

Okay, to finish up National Diabetes Awareness Month, here are two videos from YouTube:

This first one, which you don't need to watch more than a few seconds of to get the idea, reveals that only white kids get diabetes, and tries to make you feel sorry for the precious souls. The beeyotch who made it doesn't seem to get that "no one deserves this" isn't really an argument, and that diabetes research should be funded not just because cute, fluffy, white kids get it.

This second one is from a cool series called Cooking Up A Story:

Stories about real people and their special connections to food and sustainable living.

No on-air talent, no scripted programming, and no studio environments, just authentic stories filmed in native surroundings.

And, it features a hapa kid with diabetes! Yay hapa diabetics! He's cute, too, although no particularly fine point is put on that. Rather than trying to make you feel sorry for the poor cutie, the video just shows you the rollercoaster of blood sugar values that is a typical diabetic kid's day.

Note here: this is a not-so-good example of what life is like on the pump. The kid's BGs (blood glucose values) are really terrible and he can't seem to stay on top of them. This might just be a bad day for him. Or it might just be that he's a kid; kid's don't always handle diabetes that well. It's complicated and relentless.

Come to think of it, that right there is a much better argument for donation funds to diabetes research. The Juvenile Diabetes Research Foundation is the typical place to do it, although their slogan about "saving childhoods" makes me gag. My childhood was technically more complicated than everyone else's, but it was still a childhood.

November 29, 2007

Why I Am Going on the Insulin Pump

Bakc when I first got diagnosed with diabetes---and this is twenty-five years ago now---I took two injections with a syringe a day, at the same time every day, got up at the same time every day, peed into a plastic tub and tested it at the same time every day, wrote that down, ate the same amount of food at the same times every day, went to bed ... yeah, you get the picture.

Back then, there were no home blood testing kits, so we had to check urine, which could tell you what your blood sugar levels were an hour or two ago, but not right that second. So I wrote down my urine test results (about five a day) and took them to the doctor every three months, who looked at the overall picture of when my blood sugar was high and when low, and adjusted my 24-hour-7-days-a-week schedule to try to even it out more. Sometimes I'd have to take more, or less, insulin for a few months, or take it at a slightly different time.

If my blood sugar went up back then, I just had to wait for it to come back down. If it didn't, eventually I'd have to call the doctor.

Nowadays, this type of treatment is mostly not used anymore, because it's so inflexible, and wears on the body. The goal is to get your treatment to mirror a healthy body's self-regulation as much as possible. So you test your blood sugar throughout the day to see where you are, and you "correct" your blood sugar values by taking insulin if it's too high, or taking sugar if it's too low. There's a science to it: a certain number of units of insulin will manage a certain value of milligrams per deciliter (I think) of sugar in your bloodstream; and a certain amount of sugar will bring your low bloodsugar level (mg/Dl) back up a certain number of points.

There's an art to it, too. If you've exercised, your insulin will be more effective so you'll want to take less. If you're sick, or PMSing, or just tired, or even just stressed out, your insulin might be less effective so you'll have to take more. The kinds of foods you eat affect how much insulin you'll need to take and whether you want to take it all right away; with some complex carbs it's better (for me) to take some insulin before the meal and some after, because it takes the body so long to digest the food.

Point is, you control the whole thing yourself now, not your doctor.

This is now possible because: a) we can test our blood sugar and know where it is right this second, and b) we now have artificial insulins that can work much faster than the more naturally produced insulins I used to have to take. When I was first diagnosed, I took cow insulin. Those allergic to cow took pig insulin. You can probably imagine how much this did NOT mirror a healthy body's self-regulation. It wasn't until my college years that human insulin could be reproduced. A few years later they came out with Humalog, a human analog product that starts working much faster.

So the treatment I'm on now, and have been on for far too long, involves taking a basal insulin, a long-acting type of insulin that releases in my body over the course of 24 hours so that I always have insulin working, and then taking bolus insulin, a short acting type of insulin that responds immediately, so that I can take it right before I eat, or when I've discovered that my blood sugar is too high. The bolus I take with a pen, which is an injection device that looks and works a lot like a pen, only with a syringe cap instead of a nib, and an insulin instead of an ink cartridge. You can carry this around easily and shoot up in front of other people without them noticing half the time.

But the treatment is still vulnerable to human error ... or in my case, human laziness. If you don't FEEL like getting up to go take a blood test or take your shot, then sometimes you don't. Or sometimes you just get it wrong.

The pump takes a lot of that error away. Like the body, the pump's basal insulin output is done with the same sort of short-acting insulin that the bolus output is made with. But the pump gives you a little basal insulin every hour or half hour. You program it to give you the right amounts. Then, when you eat, you type in a bolus and it gives it to you right away.

It's a little hard to understand why this is better without knowing all the ins and outs of diabetic treatments, and I'm not gonna bore you further. Suffice it to say: it's a LOT better because it gives you more control.

The rub? You have to wear a hypodermic tube at all times so that the insulin gets delivered into your body. I could have gotten a pump ten or twelve years ago, but it's taken me this long to get over the psychological block against wearing a disease machine sticking out of my body. I'm over it now, but it's still pretty trippy.

Anyway, I'm set to get a pump before the year is out. We'll see how it works out.

November 18, 2007

Chronic Disease and Doctor Phobia

Despite the grand title for this post, I've done no research and have not even anecdotal evidence to support my assertion that chronic disease will give you doctor phobia.

No, not everybody. But seriously, think about it. The reason that most people aren't afraid of doctors or don't hate them might be that most people, most of the time, for most of their lives, are fairly healthy. Or, if they're not, their poor health is a result of lifestyle, and manifests in frequent bouts with colds and flus and things of that sort, i.e. not doctor-ready disease. So most people just plain don't see doctors very often, very long, or very intensively.

People with chronic disease associate doctors with bad things: the time you got so sick you almost died and went to the doc/hospital and they told you you had a disease which would constantly threaten, and in the long run shorten, and on a daily basis completely alter your life. And thereafter, going to an office to get frequent updates of bad news.

And this is the best case scenario. I mean, this is what happens when you have good doctors. When you have bad doctors, you can add to the above:

  1. The time/s something really bad happened that didn't seem to have anything to do with your disease and your doctor blew it off and you ended up in the hospital, and it was a fellow chronic disease patient who explained to you what was wrong.

  2. The time something really bad happened that DID have to do with your disease, and you ran around the doc's office/laboratory/hospital, freaking out and telling everyone what was happening to you and what you needed and nobody would listen to you or give it to you until you'd had a meltdown/seizure/fainting fit.

  3. The time you were in shock, a condition which is a common side effect of your treatment, and your doctor let you walk out of his office into traffic because he didn't like how you were behaving.

  4. The time/s your doctor didn't know something that you did know, but wouldn't admit it and made you feel like an idiot, even though you KNEW you were right and an article came out years later that proved you right.

  5. The times you went to your disease doctor for common problems and s/he told you s/he wasn't a primary care physician, so you asked for a referral and they wouldn't give you one, then you picked one out of the phone book and they were so clueless about how your chronic disease behaved with common problems that you (see a theme developing here?) ended up in the hospital.

  6. The time/s you started with a new doc and during the intake interview the doc came up against the fact that your symptoms are atypical, so s/he just plain wrote down what s/he expected your symptoms to be, rather than what you had just told them they were, and you only found out later when you got the ten-page DMV form back from them that they had to fill out for you to get your drivers license, that they had sold you out to the DMV for the typical, and more dangerous, symptoms that you didn't have.

Yes, all of these have happened to me.

And, on top of all of this, I had the ultimate bad experience: during a common, out-patient surgery in 1999, my anesthesia began to wear off halfway through the surgery, and during the last fifteen minutes I felt what was going on. (It was eye surgery.) It hurt, but the anesthesia hadn't worn off entirely, so it was really more about fear and loss of control than anything else.

After that I didn't go back to that opthamologist for three years. Sure, I made appointments, but then, when the day for the appointment came, I'd just ... forget. Then I'd remember when it was too late and make another appointment and then ... forget. Again and again. For three years. Finally, it occurred to me that I didn't actually have to go back to that doctor and I found a new one. Two years later, I finally got my butt into a seat in his office.

From there things went to worse. I was absolutely awful to the staff in his office. Of course, they put me through an obstacle course which was worse than usual: a clipboard for my info, a nurse to take more info, a tech to do the tests, an underling doc to do an initial examination ... all of this before I got to see the real doc. The underling doc asked me some questions which made it clear that he wasn't too familiar with diabetes ... and I told him so. By the time the real doc came, I was persona non grata. Even after I burst into tears and commenced to sob in his office for half an hour, it didn't seem to occur to anyone to ask if I was alright. All that mattered was how I was treating them, how they felt about me.

I finally explained what had happened to the doc and he got a lot nicer ... but not before he had defended the bad doc to me. What an asshole. Yeah, both of them.

Now understand: I realized that I was avoiding the eye doc, but I didn't actually feel any fear per se. I didn't feel anything, not even the desire to avoid the doc. It was all happening under the surface, and manifesting in a very simple inability to remember my doctor's appointments. After my crying jag at the eye doc's, I realized that I had been hiding a leetle bit of trauma, but I still didn't realize that I might be doctor phobic until this past week.

See, I'm trying to get in to see a new doc, who works together with a primary care doc (my current doc doesn't do that, but it's important for chronic patients whose common flus and infections are complicated by the chronic disease). I made an appointment, forgot it, made another one, and forgot that, too.

It was weird. The second appointment, I put it into three different calendars and reminded myself mentally of the appointment three or four times a day for a week. Then, the day of the appointment, I forgot about it from nine in the morning until 5 in the evening--exactly as long as needed to prevent me from doing anything about it.

It was bizarre being able to observe my own neurosis in operation. So obvious! So unsubtle! So effective! I decided to nip it in the full-blown bloom and went straight into the doc's office the next day, without an appointment, and asked to be allowed to introduce myself to the doc, just for a sec. He seems like a nice young man, the first doc I've had who was very obviously younger than I. Let's hope that does the trick.

People who know me consider me independent in the extreme, and it's true, I insist on my independence. But what no one realizes is that my life is lived in a state of the most abject dependence: on doctors. The pharmaceutical products that literally keep me alive--insulin and thyroid--aren't available over the counter, why exactly, I don't know. I can't get a lifelong prescription for them. I can get, at most, a year's prescription for the stuff I've been using for twenty-six years. I need a doctor to get them for me.

I can't even order tests for myself. I'm supposed to get a certain set of tests done quarterly, my entire life, but I can't order them myself, or read them myself. A doctor has to order them for me and gets them sent directly to her/him. I can't even go and look at my medical files at will. I have to request them and go through red tape.

My health, my quality of life, even my mobility (like my ability to get a driver's license) hang by a doctor's whim, mood, ability to understand, or free time to keep up with their medical journals. No healthy adult has a life so affected by another adult's quality of mind--not even an employee of a bad boss. It's impossible to understand what this is like if you are not a chronic patient yourself.

The "good" diabetics I know (of), the ones with good control, manage a sort of doublethink that I can't maintain: while they educate themselves thoroughly and relentlessly, they also maintain a plausibly deniable subservient relationship to their doctors. If you read their blogs or listen in on their boards, they never make a move without checking with their docs first. They'll even use language that fits more with a parent/child relationship or a military hierarchy: getting "the go-ahead" and such like. Permission granting.

I'm not sure this isn't the healthiest way to deal with doctors who are trained to unconsciously despise patients, and to consider themselves--and not the patients--the hero of the story. Until our medical system evolves further and doctors get less adulation from patients kept ignorant by the appalling state of our pubic science and health education, and more understanding from well-informed, empowered clients (which is what we are), to stay healthy you probably do have to behave like a good child.

Which means I'm fucked.

By the way, this is all by way of saying that I won't be getting the pump in November. My next attempt at an appointment with the doc isn't until early December.

November 10, 2007

Diabulimia

I was horrified to read this article in Salon about Diabulimia, a new eating disorder that affects only Type 1 diabetics like myself.

As I wrote in the previous post, when you have full blown diabetes, you'll eat carbs but not be able to use them, so you'll be essentially starving to death. And yes, you'll lose a lot of weight. The four big symptoms of diabetes are: excessive thirst, excessive urination, extreme weight loss, and blurred vision.

This article talks about young girls and women who are Type 1 diabetics who use diabetes to lose weight. Yep, that's right, they starve themselves while eating tons of food. As long as they don' t eat fat or protein, they'll lose weight quickly.

The thing the article doesn't mention in much detail, presumably because the writer isn't diabetic, is how awful hyperglycemia (high blood sugar) feels. When you don't take your insulin but still eat, you have tons of unused sugar running around your system. It doesn't just run innocently around, though. It collects where it shouldn't.

Like in your eyes, for example. The blurred vision? That's you going blind. It takes a few years, but unchecked hyperglycemia deposits destructive sugar in the blood vessels in your eyes, which then burst from the pressure, damaging your retina.

Or in your kidneys, putting pressure on them. Diabetes is the leading cause of kidney failure. Why? Because your body tries to flush out this destructive loose sugar and you have to pee, literally, every fifteen minutes, and are thirsty all the time. Processing all that sugar destroys your kidneys.

Your eyes feel swollen and you can't see properly, even with glasses. You're thirsty and can't quench your thirst no matter how much you drink. It's like a Greek version of Hell. You can't move far away from a bathroom or you'll pee your pants. Your joints feel like they're swollen, your head feels like it's swollen, and gravity is stronger. You're so tired you can't walk very far without having to sit down and rest. Your heart races all the time and you're breathless with any exertion. You just feel sick. Constantly, so that, although you're tired all the time, you can't sleep.

It's horrible.

And that's just the direct effects. Secondarily, yeast and fungi loooove sugar, remember? So you get yeast infections. Yes, even the guys. Guys, did you know you could get yeast infections in any warm, moist body crease? Ladies, imagine a yeast infection that just. won't. go. away. Also, itchy skin infections.

Cuts don't heal and get infected easily. Tattoos are clearly out. And you're more susceptible to other diseases, especially bacterial ones.

It's gross, it feels terrible, and your quality of life is shit.

This is why it horrifies me that girls can hate their bodies so much that they'd put themselves through this hell just to look thin.

What is this world coming to?

November 09, 2007

National Diabetes Awareness Month

220pxinsulincrystalsNovember is National Diabetes Awareness Month and I'm going to observe it this year.

I'm going to post a little bit about diabetes, and I'm also going to--this month--finally get on the insulin pump. I have an appointment with a new doctor on Monday and I'm going to get the ball rolling. Yay!

But first, what IS diabetes? I find that most people don't know, and don't realize that they don't know because it never occurs to them to think about it. It has something to do with not eating sugar, they think. You can't eat sugar.

Frankly, I've heard some really stupid things about diabetes, and seen even stupider things on TV and in the movies (there was a scene from Night Court where someone went into insulin shock, so they cured her by giving her more insulin. Nice logic there.)

Okay, here goes: you know how when you eat, your food is broken down in your mouth, stomach, and intestines? The protein is broken down into amino acids and you get vitamings and mingerals, and all that good stuff? Plus fat?

Well the most biggest part of your food is carbohydrates. Bread, pasta, corn and beans, taters and roots. Fruits. All of these things deliver carbs. And sugars are also carbs, of course. Sugar is a kind of carb. Everybody knows this, after Atkins and South Beach.

What a lot of people don't seem to know is that ALL carbs either get broken down into sugar (glucose) or get passed through your system and out the other end (fiber). The glucose that was your sandwich or your mac 'n' cheese is absorbed from your intestine into your bloodstream, and circulates around your body as ... blood sugar! (or blood glucose, "BG".)

The BG is taken up by the body's cells out of the bloodstream and burned for fuel (or stored in the liver and muscles for fuel later.) That's the simple version, anyway. But this doesn't happen automatically. For the cells to receive and use the blood glucose, the hormone insulin has to be present. Insulin binds to the cells and activates their receptors so that they can use sugar. Without insulin, the BG just circulates and circulates without being used, until it is eventually excreted out the usual channels (urine, sweat, tears). Without insulin, no matter how much you eat, you starve to death.

Diabetes is, quite simply, a disease that keeps insulin from triggering your cells to receive sugar.

There are three ways this can happen, and therefore, three kinds of diabetes:


  1. Type 1: the body's immune system identifies the beta cells in the pancreas that produce insulin as foreign, and release antibodies to attack them. Over time, they destroy all or part of the body's ability to produce insulin. Type 1 diabetes is caused by the lack or insufficiency of insulin.

    Type 1 requires insulin injections for treatment and is therefore often called "insulin-dependent diabetes."

    Also, Type 1 tends to occur in children or younger adults who are otherwise healthy, is genetic, and is probably triggered by a standard viral disease like a flu. Type 1 is not preventable with lifestyle changes. (There are some experimental treatments that can be given to people at great risk for Type 1 diabetes, but this involves compromising your immune system and/or taking preventive insulin shots.)

    About 10% or less of chronic diabetics are Type 1.


  2. Type 2: for a variety of reasons, the body becomes desensitized to insulin, and can't use it effectively. This is often accompanied, later, by some impairment of ability to produce insulin. Type 2 is caused by the inability to use insulin.

    Type 2 can be treated with, in order of severity: diet and exercise, drugs to stimulate insulin production, insulin injections to supplement insulin production.

    Type 2 is also genetically influenced. Type 2 is the kind of diabetes that we are seeing a surge in as a result of the obesity epidemic, and can be influenced or even caused by lifestyle. "Can be," I said, though. Some people have such a strong predisposition to Type 2 that they can be doing everything right and still get it. And some people can be obese, and do everything wrong, and NOT get it. So there are no guarantees.

    90% or more of chronic diabetics are Type 2.


  3. Gestational: experienced by pregnant women with a genetic tendency to Type 2 diabetes. Hormones present during pregnancy cause them to become desensitized to insulin, as in Type 2. Usually resolves after birth.

There's a huge confusion between Type 1 and Type 2, and people are starting to shame diabetics because of misperceptions. So let me repeat: TYPE 1 DIABETES HAS NOTHING TO DO WITH LIFESTYLE AND IS NOT PREVENTABLE.

TYPE 2 DIABETES IS NOT ALWAYS PREVENTABLE.

The other big misconception is that insulin is a cure for diabetes. If you've read the above, you'll have noticed that taking an insulin shot doesn't seem like something that'll cure anything. The cures would have to involve: for Type 1 some way to keep the immune system from destroying the beta cells, and for Type 2 and Gestational some way to make the body sensitive to insulin again.

All injected insulin does is mimic the natural action of the body ... mimic it badly, I might add. It's much easier for your body to regulate itself automatically than for you to do it by hand, consciously.

Okay, I'm bored with this topic now. Will write more later.

By the way, I'm a Type 1. Have been since I was 11.

Oh, and the image at the top is of insulin crystals. Pretty, no?

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