adrian_turtle

The full study and set of recommendations aren't available yet. I'm going by the New York Times article. Apparently, somebody did a statistical study on the children of women who took Depakote while they were pregnant, comparing them to the children of women who took other anti-seizure meds.
http://www.nytimes.com/2009/04/16/health/research/16child.html?hpw
Comparing IQ scores at 2 and 3 found a small but statistically significant difference. 6-8 points, difference. They looked at 303 children, which is a small group but not completely ridiculous (as opposed to studies that try to draw sweeping conclusions from 15-patient samples.) So they concluded:

Physicians involved in the study warned that valproate should never be the first choice for use in women of childbearing age, though exceptions may be made if a woman’s epileptic seizures cannot be controlled with other available medications.

The first problem is the idea that discovering something might cause problems in pregnancy is a reason for restrictions on "women of childbearing age," rather than some subset of that group. (Women of childbearing intentions, perhaps? Sexually active heterosexuals of childbearing age?) I realize that plans change, accidents happen, and a teenager isn't going to call her neurologist either after a rape or after starting to experiment with her boyfriend. Nevertheless. I'd like to hope the Atlanta neurologists who did the study took a more nuanced view, that was only simplified for the newspaper summary. It doesn't really matter. Most doctors will only read the abstract, and are likely to remember a sentence at most.

This isn't like making sure everybody gets enough folic acid. Imposing more limits than necessary on the range of possible anti-seizure meds can be a serious problem. As a woman of childbearing age who is never going to have a child, it scares me even though I can't imagine a situation where I would be willing to take Depakote. I got horrible side effects when I tried it. That brings us to the second problem: only breakthrough seizures are recognized as justifying use of Depakote in women of childbearing age. It is reasonably common to change anti-seizure meds when a person has troubling side effects with one med and hopes to get the same seizure control (or migraine prevention, or whatever) with fewer side effects. Because the study found a relatively small danger in utero, the authors recommend prescribing Depakote if nothing else can control seizures. Generous of them.

Once upon a time, I met a woman from Atlanta with partial seizures and out-of-control side effects. Her doctor just couldn't *believe* that a married woman her age (I think it was early 30s) could avoid having a second child, could seriously want to avoid it. The doctor thought the possible risk to a hypothetical fetus was more important than the woman in front of him, coming back again and again to tell him about disabling side effects and beg him to prescribe something else. She left Atlanta. She found a better doctor, and meds that aren't so hard on her body. But I feel like I'm racing to get to menopause before standard medical practice (and insurance formulary guidelines) make the universal substitution "not for women of childbearing age" for "not during pregnancy."

I am really angry at the implication that I am somehow being unreasonable in expecting that my health insurance would continue without interruption when they stopped sending the bills to my former employer and started sending them to me. (Especially considering they told me explicitly that I would go on sending the same premiums to the same address as before, and would keep the same policy with the same policy number.) I have mostly managed to avoid expressing anger *at* the clerks on the phone, because I believe the problem is not their fault, but that belief starts to slip when people from both the HMO and Commonwealth Choice tell me to calm down, I should not expect an immediate response. They sent the information Feb 2, and I should be patient and trust that the database will be updated within 24-48 hours. You know, I don't trust them anymore.

The first time I saw the occupational therapist about my shoulder, she went through an amazingly long list with me. The list can't really be called "What Do People Do All Day?" Do I do this and that? Do I need help with it? Does it hurt? How much of a problem is it? Some things (child care, gardening), aren't problems because I'm not trying to do them. Others (walking, putting on shoes), aren't problems because they're easy for me. I knew I was doing better since the summer, but I still sort of surprised myself when I said laundry and grocery shopping were only a little challenging...this spring and summer, they were much more difficult. I asked for help with driving. The fact that driving makes my pain so much worse makes everything more difficult. This is supposed to be the sort of thing OT can help with, and I've brought the car to several appointments in the hope we would be able to work with it. (There hasn't been time. Recent visits to the clinic have been deeply fraught.)

The OT asked if I used a computer a lot. (Not compared to most of my friends, but I suppose some people would consider it a lot.) According to all the best practices of occupational therapy, this is a Problem that should be addressed with Proper Ergonomic Body Mechanics. It doesn't feel like a problem. When I just use my laptop on a table, with improper body mechanics, it doesn't aggravate any of my pain problems. Not even when I use the computer all day. That's why I bought the laptop in the first place. Using a mouse is just terrible for my hand pain, and most auxiliary monitors are migraine triggers. I'm aware of those problems on a fairly short time scale (5-10 minutes for the mouse, usually less for the migraine triggers).

According to the OT, good body mechanics require having the computer monitor at eye level and the keyboard low enough to type with forearms parallel to thighs. Obviously, this isn't possible while looking at a laptop screen and typing on the same laptop.* According to the OT, any other position is bad for a person's neck and back. Even though I am not aware of any short-term correlations between shoulder pain and computer use, unnecessary strain on my neck and back are unlikely to do my shoulder any good in the long run. So I am trying hard to follow her suggestions:

1) I elevated the laptop so the screen is approximately at eye level. I try to increase text size instead of leaning forwards to see things.

2) I bought an extra keyboard to plug into the laptop. It's this thing
http://www.amazon.com/Microsoft-Digital-Media-Pro-Keyboard/dp/B0002CPBUK
which has an extra row of keys for keyboard shortcuts. I know there are users who find it not only tolerable but actively useful (because more than 100 of them posted to Amazon), but it's driving me crazy. The keyboard driver slows down the whole computer like it's telegraphing Redmond for permission to display each letter I type on the screen. The added function keys are for things I haven't used in the last 2 weeks, or for things like "open web browser," which hadn't been a navigational problem before. The trade-off is that the labels "F1", "F2", etc are small and almost illegible, under the keys instead of on them. And that the keyboard shortcut I used to rely on (F5=screen refresh) does not work anymore.

3) I plugged in the auxiliary touchpad I bought in order to use with desktop computers at work. It claimed to work as a simple touchpad if you just plugged it into a USB port, but more elaborate functionality was available if you installed the driver from the CD. No such luck.
http://www.cirque.com/cpages/?page=23
Just plugging it into the USB port makes it work like an inert piece of plastic. I've disabled most of the elaborate touchpad functions, but the driver still slows the laptop down even worse than the keyboard alone.

I hadn't appreciated how much of the reason I valued my touchpad before was that I could use it in a central position, with both hands. I don't mean with either hand--most pointing devices advertise that users can set them up for right or left hand use. I mean BOTH hands. When I was mostly using my right hand, I'd sometimes bring in the left for a moment to push a button. Or when I was mostly using the left hand, I'd bring in the right to manipulate the cursor through something fiddly. It happened so easily, without pause or profanity, I hardly noticed I was doing it. But now I have a touchpad I can put to the left or right of my keyboard, and it matters. (Because both sides are wrong.)

4) Most of the time I'm online (ie, most of the time I use the computer) involves websites set up to require frequent touchpad or mouse use. I don't know how to avoid this.** Sometimes I use the auxiliary touchpad, which twists on its cord so often I need to look down and orient myself to it. Sometimes I reach up to use the touchpad in the laptop, which is at an inconvenient level, but is at least central so there's no lateral strain in reaching for it. And it keeps itself stable. Either way, I need to look down at the keyboard to find my place again, even after just using the touchpad very briefly.***

5) This setup is a lot less comfortable than what I was doing before. It's so bad for both my shoulders**** that I've been avoiding the computer, which is terrible for my job search as well as my social life. I know this is really trivial, as adaptive technology goes, even as OT goes. But it's enough of a change from what I'm familiar with that I'm having real trouble with it.



* Is it possible to connect two laptops, using the input devices from one and screen from the other? With the processor and memory from the one providing input devices, or from whichever is more powerful?

** I use Hotmail, which is profoundly cursor-driven. One can't even delete a message, or read the next one, without clicking a box. I started using Hotmail because of the ease of reading mail from different computers, and that's still valuable to me. Now it's important to me to maintain that email address because it's on my business cards and resumes, and I want to be reachable through it. Still, the GUI is becoming problematic...is there a way to read Hotmail through another mailreading program?
Is it possible to program keyboard shortcuts to navigate websites like CareerBuilder? The hundreds of variations of BrassRing? (Every large corporation seems to have their own, these days.) What about those popup windows that ask if you want to [Continue] or [Cancel]? (where no part of either word is emphasized in any way.)

*** Having the keyboard in that little drawer under the desk makes it hard to see at night, because the desktop shades it from the lamp on top of the desk. (I don't want to put a floor lamp right behind my chair, because I'd knock it over when I stood up.) Is this a solved problem, or is the Proper Ergonomic Solution to only type in full daylight? Or in rooms with overhead lights (presumably not in New England apartments. This problem has almost certainly been addressed before.)

**** When I say it's bad for my shoulders, I'm talking about a time scale of hours and days. The OT says it will be good for my shoulder on a time scale of months and years. That's why I haven't given up on the whole thing already.

I thought I had found an acupuncturist, or a way of doing acupuncture, that worked for me. Sometimes it didn't help, or only helped for a few minutes, but other times it gave me more than a day of diminished pain. The time and money I'm spending on it is not trivial. It's not so much the half-hour I actually spend with the acupuncturist that makes me wonder if the benefits are really quite worth it...it's the time and energy of getting to Central Square, and the constraint on my schedule. It's challenging.

( Read more... )

When I plan for treatment of chronic health problems, and consider "Can I afford this treatment now?" I think about how much it will cost in money, and how much it costs up front in time. Sometimes I remember to think about travel time and energy, or how difficult it will be to schedule around work or other obligations. The thing that's hard to plan for is the risk of introducing new problems or of making the original problem worse. At least people are accustomed to talking about side effects for drugs (even if they presume they all go away when you stop taking the drug), but stuff like acupuncture or physical therapy or vitamins or chiropracty are all spoken of as having positive effects when they do anything at all.

A recruiter called me this morning to say the company was hiring somebody else for the temporary technician job (that would be a long commute for me.) It wasn't clear if my commitment to stay for a 6-month contract was not convincing, or of they wanted somebody who wasn't so overqualified, that might be willing to stay with that level of job, indefinitely. Another factor was that they could get the other candidate for less money. That doesn't seem quite right, as my only discussion of salary was with the recruiter (who works for an independent contract agency, not the hiring company.)
Recruiter: What hourly rate do you want?
Adrian: I can be pretty flexible. Do you know how much they're offering?
Recruiter: [number]
Adrian: Wow. Are you sure?
Recruiter: Lemme check. Just a minute. [pause] Yeah. [same number] Is that ok?
Adrian: Yeah, I can work with that.

So, I could work with it, but it turns out they couldn't. Something about the process makes me feel cheated, but the end result with me not having to do the long commute for 6 months may be some kind of win.

( health insurance difficulties )

I thought I'd grab my tax return, my driving license, and my passport*, and catch the next bus. I finished my taxes a few days ago, and all the documents were right where I remembered putting them. The problem was that I couldn't find my passport. Or my social security card, for that matter. They're probably together. I brought them both to work, to show HR in the middle of December. I don't remember where I put them after that. I've been turning the apartment upside down in search of them. This is really scary. I thought I only needed to find somebody to offer me a job, and to find the money to pay for health insurance. What could I do with either one without proof of citizenship**?

*My passport expired in November, but I haven't renewed it. I didn't want to send the old one off to the State Department and be without it for 2 months when I might need the proof of citizenship to start a new job.

**Proof of legal residency would probably be ok, if I were a citizen of someplace else. But as I AM a US citizen, not just a US taxpayer, I need to prove it.

I've been having a lot of trouble with depression this summer. Some of it is random crying fits, but most of it is the kind of depression where I just get stuck. I can recognize what needs to be done, I just feel too hopeless or uncertain to take effective action. Sometimes this means not applying for jobs. Sometimes it means not posting to LJ or sending email to friends. Being so stuck has really slowed down the process of trying to treat depression--it's not that I was doing something more important than calling the doctor to make an appointment, or calling the psychiatrist to say "this isn't working, it's time to try something else." It's just that none of those things were getting done, while I sat here like a lump and stared at the wall a lot.

Anyhow, I started a new medication a few days ago, and it seems to to be helping a little. Things that used to be impossibly difficult are now just very, very, difficult. Job hunting. Writing to extended family. Dealing with mending. I revised my resume to try to look more like a technician with transferrable skills. I don't have the creativity and initiative to work as an independent researcher, even if I had experience in a live industry. It scares me to see how people have to deal with job conditions that would break me in short order. I mean, more broken than I already am. http://therck.livejournal.com/165194.html http://callunav.livejournal.com/750562.html

I found a couple of job descriptions on Craigslist that looked promising; a temp job, and a permanent position in the same company. (In Cambridge. On the *T*.) I downloaded the descriptions, and took my laptop off to where I could work in air conditioning. Then I spent the afternoon working on cover letters for those two jobs. I could tell that a confident, efficient, writer could have dashed them off much faster. I could almost remember *being* a confident, efficient, writer. But now it took me almost 6 hours of fretful, grinding, miserable, work.

Monday morning, I went to actually apply for the jobs, and discovered both had to be done via webform, with no way to enclose a cover letter. 4 hours later, they sent me 2 identical rejection slips. "Thank you for your interest and we wish you the best of luck in your job search. Please do not reply to this email." My confidence was not ready for that.

Last week, I mentioned having problems with my left shoulder. My dr looked at it and sent me to a physical therapist. I felt like I should have been very pleased...objectively, physical therapists are a lot less dangerous than orthopedic surgeons. (And a lot more useful than saying, "Too bad you have a sore shoulder. I guess you need to wait for it to heal." Which I could have gotten for free from any of you.) But I was terrified, because I've had so many bad experiences with physical therapy.

( cut in case anyone doesn't want to read about bad experiences with physical therapy )

Monday, I went to the fabric store. I wasn't thinking of buying cloth. I don't sew more than minimal mending, and sometimes not even that. I was just going to the fabric store because a knife sharpener (who is also a scissor sharpener, presumably) picks up and delivers there, as a convenient service to customers. Wow. Sharp knives make life easier.

While I was there, I saw something that made me think "Ooo -- shiny!" Or whatever the equivalent is for fuzzy fleece stuff with dinosaurs, that only needs to be cut into strips to become scarves for chilly little dinosaurophiles. The clerk was kind enough to sell me 3/4 of a yard, 1/4 yard at a time. I washed the sizing off, and cut off the little bits at each end, the ragged white bits with no dinosaurs. They look like scarves already. The only question now is whether I should make them into *different* scarves. I could cut fringes into one, to keep them from being quite identical. I don't know if that would aggravate the problem of wanting whatever one's sister has, that I am trying to prevent by giving them two. (The third is mine.)

This past summer, I went to an acupuncturist a few times. After a few treatments, he said my nerves were too hypersensitive for him to do any lasting good, and I should come back when my hands were under less physical strain, or when I was taking more effective medication for nerve damage. One of the things he tried, but was not able to do, was to bandage my hand in a way that put pressure where pressure actually helps. When I hold my bad hand in my good hand, I press on the side of the wrist in a spot that helps. (I do this reasonably often, when it gets bad.) But trying to bandage it that way just did not work. We tried gauze, tape, elastic bandages, cloth bandages, various things with lumps of stuff to try to press on the tendon. None of them work, at least not the way I can fasten them. I don't try very often, because it's such a hassle. But there are 6 strips of fleece on my desk, half printed with dinosaurs, half blank, all very soft and inviting me to fidget with them. I can tie one around my wrist with one hand and my teeth, and pull it tight up against the spot where pressure feels good. It relaxes in a few minutes, which is probably good for the safety of my fingers. But I can have that pressure against the tendon (which the acupuncturist called "supportive" and I just think feels good) provided by fuzzy dinosaurs while I do something strenuous like turn a pair of wet jeans right-side-out.

Way back before Arisia, on January 12, I had a prescription to pick up from the doctor's office. One of the advantages of having a car is that I can leave work less than an hour before the doctor's office closes, while it can take almost 2 hours to get there by bus. Unfortunately, I could not start my car. There wasn't anything wrong with the engine -- I just could not turn the key in the ignition. I made a couple of phone calls to ask for advice, and see if a friend could pick up the prescription for me. marius23 suggested turning the steering wheel all the way to one side and then trying to turn the key, but that was no help. So I just left the car in the parking lot at work. Another friend (not on LJ) picked up my prescription the next day, and we saw each other at Arisia.

Arranging for towing and repairs seemed rather daunting, especially in a crowded, icy, parking lot. So I didn't deal with it right away. It's not like I had an urgent need for the car. All I did was look up what might be wrong, and discover it's a known problem. http://consumeraffairs.com/automotive/ford_focus_ignition.html
I didn't find the information terribly reassuring. While I was stalling, I got something from AAA that I would ordinarily consider junk mail. They offered me a discount membership, with free roadside service and towing. They were generous enough to include a temporary membership card I could activate immediately. It's a sensible business practice on their part; "It's January, your car might break down in the snow, wouldn't you like to buy some inexpensive insurance so you don't get stuck?" I don't expect many people receive the offers when their cars are actually broken down and actively in need of towing or other roadside service.

So, Friday night, AAA sent a tow truck out for my poor car that wouldn't start. The driver asked me what was wrong with it. Then he asked me for the key. He applied enough force to get it to turn, and the car started. I started it a few times, to check that I could, and drove it home.

It bothers me that my hand wasn't strong enough to start the car myself. Even when I wasn't being careful to avoid setting off pain flares, just pushing as hard as I could, I simply did not have the strength. It bothers me a lot more that it did not occur to me to consider brute force as a solution to the problem. There are strong people at work I could have asked for help (with a lot less time and trouble than calling AAA), if I had thought of it. I'm finally accustomed to not being strong, to not using my hands. But I don't like it.

In the past, I've posted about problems with my NTI. When the dentist who made it for me (and used to do all the adjustments for free, or for very low cost) moved out of state, I should have found another NTI-dentist right then. Instead, I went to his old partner in Brookline, who didn't seem to take my problems seriously. Yes, there's a dental device I sleep with for headache mitigation. Yes, the main indication of something being wrong with the dental device is waking up with worse headaches than usual. No, it's not broken. But I've worn a groove in it, and it's starting to feel a little weird, and ... headaches, help! The old Brookline dentist understood this. The guy in the same office, not so much. The office being in *obscenity* Brookline, without evening hours, I am disinclined to go back.

I'm having problems with my mouth. Still, or again. Some of it is the NTI. The groove in it is wearing deeper, and I'm waking up with worse headaches. Of course, I've also been under a lot of stress lately, which is probably making me work harder at clenching my jaw. Not sure if I should mention that. When the NTI fit properly, it interrupted that reflex and my jaw relaxed when I slept, no matter how much angst I took to bed.

There's also my haunted tooth, #13. It had, over way too many years, a cracked filling, a painful metal crown, a root canal, an abcess, and an apicoectomy. I was thrilled with the root canal in 2002, because the tooth finally stopped hurting for the first time since 1998. It was scary to have it start hurting again early this year. The attempts to repair it this spring have been slow to heal, approaching an asymptote of "much better but not quite perfectly painless." Clenching my jaw makes tooth #13 hurt more. I'm the kind of idiot stoic to clench my jaw harder when I have toothache. Especially when I'm asleep and not thinking about it.

I'm going to see a new dentist this morning. I found his name on the NTI website, and chose him for proximity to my office and not having anything on the website that actively offended me. I made the appointment just to consult about the NTI, not for general dental care. (That was last week. Tooth #13 has been bothering me more since then.) We'll see how it goes.