rivka

Yesterday I suddenly found myself barely able to walk. That was strange.

I had some twinges in my hip (the artificial one; or rather, the flesh and bone around the artificial one, given that the titanium parts can't feel anything) yesterday afternoon. It didn't surprise me because thunderstorms were predicted, and I often have some pain with changes in the weather.

But then, without warning, in the evening I couldn't put enough weight on that leg to walk normally. There wasn't the intense pain I would have had before the hip was replaced. Instead there was an overpowering feeling of weakness. I lurched all over the place when I tried to walk. It felt, I don't know, like it might feel if you tried to walk on your elbow: it's not agonizing, but there's simply no fucking way it's going to work, because your elbow was not meant to hold your weight.

I can't even describe how surreal it is to have something go wrong like that without it hurting a lot. Of course I did feel some pain: below the artificial joint at the top back of the femur, and at the inside edge of the pelvis. It was noticeable, but pretty minor stuff. It's strange to be reminded again, so strongly, that the parts of my body that hurt me for years are simply gone.

When we got home I took some naproxen and got out my cane, and with the help of those two things I was pretty much fine. Today I feel fine - a little sore in the same places, and disinclined to run a marathon, but fine. I am limping, but not more than usual.

I am thinking, though, that I might have just gotten a postcard from my future. I have always known that my artificial hip will only be good for so long. They promised me 15-20 years, which seemed like forever when I got the surgery at age 23. Now I'm 36 and my artificial hip is 13 years old. Is this what they feel like when they're starting to wear out? I wonder.

This might have been just one of those weird things that happens, and a sign that I need to unearth my old physical therapy exercises and get to work strengthening the muscles around the artificial joint. Or maybe this is the beginning of a decline in my mobility, heading towards a second hip replacement.

I try to think about how that would look. I am really remarkably functional and mobile for someone who used to have such severe arthritis. I would have a long way to fall before things got objectively bad. I could take anti-inflammatories regularly again, for example, or use a cane outside the house, or both, and those things would buy me a lot more time. I wouldn't want to have surgery again before Colin is at least three. I'd also need to time it around my planned future submission of an R01 grant.

My weird little episode yesterday might not have anything to do with my future. I do know that. But even if it was just a glitch that doesn't repeat, it reminded me that my hip will wear out someday, and that I am approaching the range I was quoted.

Which is a very strange thing.

This week Alex's class has been learning about differences and similarities between people. Today I visited her classroom to talk about having a disability.

It was a challenge. I knew that it's much much harder to handle a group of preschoolers than it is to handle one preschooler, but I hadn't really figured out the effects of group size. Her class is about twice the size of the preschool RE classes I've taught, and it was at least twice as hard to keep them focused and with me.

I started off by having us all raise our hands as high as we could. I commented on how long and strong their arms looked, and asked them if there was anything different about my arms. "Your arms are longer," said a kid who, admittedly, was seated on my left. I agreed that my left arm is longer than theirs, then showed them just my right arm.

"My right arm is much smaller. I have one big arm and one little arm. Did anyone ever notice that before when I came in the classroom?" They all shook their heads.

I had one kid come over and try to bend my elbow. Then I asked another one to count the fingers on my right hand. (Everyone else in the class decided that they had to count their own fingers and report to me that they had five.)

"So, my arm is short, the elbow doesn't bend, and I have four fingers. That makes me different from everyone else in this room. When somebody's body is made differently or works differently from most people's, that's called being disabled." I explained that I was born this way and was this way when I was their age.

I asked them if they had ever seen anyone else whose body worked differently. One kid volunteered that her brother is bigger than she is, and I realized that I would have to be much more concrete. So I asked about people in wheelchairs (most of them had seen one) and people who can't see (most of them had also seen or heard of this). One kid volunteered that blind people can have dogs that lead them.

I had two points I wanted to make about disability. First I asked them if they thought that, when I was a little girl with one small arm, I could still play. They thought so. Then I asked them about a child who can't see and a child who can't walk - could they play? They were a little unsure, so we talked about things those kids could play.

"Sometimes, when kids see someone who is disabled, they think that person can't do anything. But if you watch, you'll see that disabled people have neat ways of doing things you might think they couldn't do. My arm is little, but see, I can use it to hold Colin. I can also type on the computer and play songs on the piano with my little hand. Alex's grandpa is blind. He can't see to read a book, but he can listen to stories on CD and he can even go hiking in the woods with special sticks to keep him on the trail. So when you see someone who is disabled, look out for their special ways of doing things."

At the end, I invited all the kids to come get a close look at my arm and hand. I told them that they could touch me if they wanted and that they could try to bend my elbow - that it wouldn't hurt me. About half the class took me up on it, including one of the teachers. The kids really liked putting their own hands up to mine and patting the smooth curve I have on the inside of my arm instead of an elbow crease.

I think it went well. It was kind of fun, too.

I am packed for our vacation, yay!

...Well, my clothes are packed. I still need to assemble trifling things like entertainment and medicine and directions and plans. But how much could that all matter? The important thing is that I'm almost ready to blow on out of here and not come back for several days.

Great midwife visit this afternoon. All's well on every front: my 28-week labs were "absolutely perfect," my blood pressure (116/74) is "beautiful," my weight gain (a pound a week since the last visit) is "ideal," my fundal measurement (30 cm from the pubic bone to the top of the uterus) "shows the baby's been reading the pregnancy books," and the Niblet's heartbeat "sounds great."

But! That's not all! I saw the senior midwife today, Kathy, the one who's had her midwifery license since the year I was born. For various reasons, it's the first time I've seen her for a prenatal appointment since the first one, although we've had several phone consults. I took the opportunity to ask her the question that's been burning in my mind.

Those of you who have been reading my LJ since my first pregnancy may remember that, given the pelvic abnormalities I have from my birth defect and various well-meaning attempts to correct it, Kathy was pretty discouraging about my chances of having a natural delivery. She put my C-section risk at "greater than 50%," and was so unsure that my weird pelvis would let a baby pass through that she suggested we consider inducing before dates to make sure the baby stayed small. And this is a very non-interventionist midwife, mind you, so those are probably the best odds we would've been quoted by anyone. But then, of course, I went on and had a beautiful, unmedicated, natural delivery of a 8.25-pound baby (almost a pound over average size) at 41 weeks and 1 day.

So as I prepare to give birth again, I've been wondering: did I just get lucky last time? Did I have the world's best midwife, who heroically worked the baby around the weirdness in my pelvis with positioning and so forth and won me a natural delivery I would not otherwise have had? Or was my situation not as messed-up as both a pelvic exam and my X-rays made it appear?

So tonight I gathered my courage and asked. And her answer was surprisingly optimistic. She said that Alex's birth demonstrates that a baby is able to get through my pelvis, and that with a second birth we would expect more pelvic widening and an easier passage than the first time around. Of course she warned that if the baby is large or if the head doesn't tuck right to get past the pelvic obstruction, I might still run into problems. But she doesn't see why I should expect that I won't be able to have a similar birth to my first. What about Julie's unbelievably phenomenal baby-maneuvering skills? Don't worry, we all do that, she said.

I am so happy. I haven't been feeling as awful about the prospect of a C-section as I did the first time around - I certainly don't want one, but I've already gotten to have the experience of a natural labor and delivery, and I don't think I'd feel totally bereft if I didn't get to do it again. But I'm so, so happy that Kathy doesn't think I'm especially high-risk. I was hesitant to ask because I figured she'd tell me there was no way of knowing, it could've just been luck, et cetera. The answer she gave me instead feels like such great news.

I will be thankful tomorrow, indeed.

I think most people who read this journal know that I have orthopedic disabilities. The overwhelmingly dominant one for most of my life was my congenital hip dysplasia, which led to multiple childhood surgeries, a particularly unpleasant side effect called avascular necrosis of the femoral head, osteoarthritis by the age of 11, (literally) crippling pain and increasing disability in my late teens and early 20s, and then a miraculous hip replacement at age 23 that reversed the downward trend.

The residual effects of what used to be my primary disability are pretty subtle. I can't run at all or do any kind of high-impact exercise, and the flexibility and range of motion in my right leg are limited. My right leg is noticeably shorter than my left; I wear a lift in my right shoe and sometimes (often? usually? I confess that I don't really notice this) walk with a limp. On the other hand, when I'm in adequate shape I can easily hike five miles or so over rough terrain, and I no longer have chronic pain or routinely take pain medication.

That's kind of a strange feeling. I went through some complicated emotional work surrounding my self-identification as a person with a disability, and the social, emotional, interpersonal, behavioral, and medical consequences thereof. Then the major factors underlying that self-identification melted away. Believe me, I'm thrilled about that. There's absolutely nothing in the world like not being in tooth-grindingly awful pain every day of your life. I highly recommend it. But it's weird.

So it's easy for me to think of myself as nondisabled now, except, of course, that I'm not. I also have this right arm that is half as long as the left; small-handed; missing a finger; incapable of bending at the elbow; and fairly restricted in movement at the shoulder. Most people would, uh, probably think of that as a disability. ( Okay, I guess this is getting long enough that I should cut it. )

OMFG this is the kind of day I'm having:

Alex and I went to the Baltimore Folk Music Society's family dance, as we have done a few times before. The caller was not as great as usual, but we still had a good time. Alex mostly shadowed me - we held hands and acted as one dancer together - but when she got tired I scooped her up and carried her on my hip.

After an hour or so, her interest flagged and we were both more seriously tired. (We had our second OWL overnight last night, which pretty much used up my week's supply of energy.) I sat down on a bench and began to gather our things.

When she saw us getting ready to leave, a middle-aged woman I don't know came over to us.

"You were amazing with her-"

I gave a parental smile-and-shrug. It is tricky to steer a three-year-old through a contra-style dance.

"-the way you were holding her-"

Alex is thin and light for her size, but I can see how someone might think it's impressive to dance while carrying a 28-pound weight. I'm used to carrying her, though, so it's no big deal.

"-even though you have something wrong yourself."

I froze. Looked fixedly at her and raised my eyebrows in reproof. She didn't seem to notice. She gestured at my right arm, as if I might not have taken her meaning.[1]

"I mean, for you to be able to dance like that-"

I arched my back slightly, keeping the rest of my body stiff with outrage, looked up at her through the tops of my glasses, and gave her Raised Eyebrows of Doom.

My Eyebrows of Doom apparently need recalibrating. Because I watched, spellbound, as her hand came out. Pat. Pat.

She patted me on the head.

No, really. She literally did. I'm not exaggerating for humorous effect or being metaphorical. She patted me on the fucking head.

"I didn't even know there was anything wrong with you!" she said benevolently, as if conferring praise.

"There isn't anything wrong with me," I said coldly. "I'm a very experienced English Country dancer. I've been dancing for years." I took Alex by the hand and we swept out of the room while she uttered little exclamations of protest and surprise.

I just... wow. Wow. She... wow.

I know that I should use this kind of situation as an opportunity to educate, but I was quite literally struck speechless. I mean... I mean... okay, where do you even start with someone who, head patting?

[1] For those of you who don't know, my right arm is about half as long as my left, the elbow doesn't bend, the shoulder has limited mobility, and the hand is four-fingered and slightly smaller.

Thanks to everyone who contributed to the discussion about disability and sexuality, and how I could present those issues to my OWL class.

I went with

echosupernova's suggestion and came up with several short readings to replace the long, creepy one. We'll have a different kid read each quote, and then we'll have some general discussion and the Values Voting to complete the disability half of the evening's entertainment.

The readings I found are below the cut, in case anyone's interested. I gleaned these from various sources online, editing them down from longer essays. I wouldn't normally devote this much time to readings in an OWL session, but I think it's important to have diverse examples.( Read more... )

Not posted to the OWL filter.

I know I have some very smart, very clued-in people with disabilities on my Friends List. I'm pleading with you to help me fix the one messed-up session in OWL, the grades 7-9 sex ed class I'm teaching. Feel free to point other friends here, if you think they may have helpful comments.

( Here's the problem... )

Here's where I need your help:

1. I need readings. Anyone got anything they love? I knew I'd lent out my copy of With the Power of Each Breath years ago and never gotten it back, but I foolishly assumed that our library would have it. Nope.

2. I have three "Values Voting" statements. Please critique them, fix the wording, and suggest any better, or additional, ideas:

a) Mentally retarded people shouldn't have sexual contact, because they're not really able to give consent.
b) It's fine for disabled people to have children, even if the disability might be inherited.
c) Being in a relationship with someone who is seriously disabled would just be too hard. (Possible alternate wording: "It takes someone really special to be willing to have a relationship with a disabled person.")

I want to make this a good, engaging, educational experience for the kids. But I'm a little nervous about, um, how far inside I am on this issue. It makes it hard to know exactly what's going to be appropriate and helpful.

So... help?

"TSOs [Transportation Security Officers] have been trained to not touch the monkey during the screening process."

(From here.)

On a more serious note, I'm impressed by how carefully thought out the TSA's policies for screening people with disabilities are - but given some of the stories I've heard, I question how well those policies are understood and implemented by individual TSOs.

I was at the TSA website trying to figure out what is likely to happen when we try to bring a large, opaque bottle of medicine and a cold pack in our carry-on luggage next Friday. The official liquids policy allows quantities of less than 3oz only, but apparently medication can be carried in unlimited amounts. The medication policy also explicitly permits ice packs and gel packs needed to keep medicine cold. I have printed out a copy of the policy to carry on the plane with us.

(Oh, and you want creepy? Follow any one of those links and look at the TSA logo in the upper left-hand corner. They've put a freaking Christmas wreath around it. Now I want someone to make me a Barrayaran ImpSec Eye-of-Horus with reindeer antlers.)

According to the orthopedist, my artificial hip looks exactly the way it did in 1997. Hasn't moved a millimeter. There's some bone loss around the plastic socket - he said that the plastic can cause bone to dissolve, which I don't remember anyone telling me when I had the thing put in. But it's not enough to cause concern.

He thinks the problem is muscle weakness. After his exam, I'm inclined to agree. I had more trouble than I'd expected moving my leg the way he asked me to, not because the joint hurt but because the muscles did. So he's prescribed physical therapy, and I have to think of a method of exercise that accomodates Alex. (I'd love to hear from other mothers of babies, on that matter.)

I am quite relieved.

For the last several months, I've been having more pain than I'm used to in my right hip. I did remarkably well with that hip during my pregnancy - better than I'd expected; I had anticipated needing a cane and had considered the possibility that I would need crutches or even a wheelchair during pregnancy because of the extra weight centered over my hips. We had also considered the possibility that I would have excruciating hip pain during delivery, because of my pelvic abnormality. That didn't happen either.

But after Alex was born, and I regained my strength, my hip didn't bounce back. I have a lot of stiffness in the joint, so much so that I can barely walk when I first get up from sitting or lying down. It hurts more than it used to, including sometimes when I'm lying down in bed. My limp is more pronounced. It aches after exercise. I have some referred pain to my knee.

It could be a lot of things. It could just be that I'm deconditioned. Lord knows that I haven't been getting anywhere near an optimal amount of exercise. It could be that my artificial hip is beginning to fail - I was told to expect it to last about fifteen years, and it's been nine. I'm not sure what the experience of having an artificial joint wear out is supposed to be like, but if it feels like developing arthritis in the first place did, then this could be that. It could be that the pelvic changes that happen during pregnancy and delivery caused some sort of damage to my artificial hip or to the plastered-together old surgical breaks in my pelvis. It could be a lot of things.

In a couple of minutes I'm going to leave the house for an appointment with an orthopedist. No, not the asshole I saw when I saw pregnant. I'm not even seeing anyone in the same practice as him, ever again, ever. It's someone my primary care doc thinks is wonderful. But I'm still nervous.

One of the things she said when she referred me to this guy was, "and he specializes in minimally invasive surgery!" Please don't let it come to that.

Walking back home from the cafe where I had brunch, I saw a blind guy standing on the streetcorner waiting for the light to change.

A car pulled up on the cross street, and the passenger jumped out and jogged up to the blind guy. "Hey, do you need some help getting across the street?"

"No," the other guy said politely, "I'm just waiting for the light."

At that moment, the light changed. The sighted guy said so, and walked across the street alongside the blind guy. Then he came back, got in the car, and drove away.

I know that the sighted guy was just trying to be helpful and nice. But my question is this: how did he think the blind guy got to that corner, anyway? Didn't it occur to him to wonder how the guy handled every other intersection between his point of origin and his destination? Didn't he wonder why someone would head out alone for a walk if he wasn't capable of handling basic walking tasks like crossing the street?

I would certainly point out any unusual barriers to a blind person - "hey, they've got the sidewalk blocked off up ahead, so you might want to cross over to the other side of Read Street." But, for the most part, I assume that people with disabilities don't start off doing things that they're not capable of doing. Maybe that's just me.

Wow,

tammylc wasn't kidding when she said that there wasn't much out there on the web for women having Cesarean births.

Not much you'd want to read, anyway, if you think you're going to have one.

The first hit on Google for "cesarean section" is at childbirth.org, usually a good general information site. But their C-section page starts with a link to "Books on Labor, Birth, Cesarean and VBAC [vaginal birth after cesarean]" in which only one book about C-sections is recommended. It's called The Silent Knife: Cesarean Prevention and VBAC. The other books with "Cesarean" in the title are all about VBAC. The childbirth.org list of links continues: How to avoid an unnecessary section, risks of Cesarean section, Cesarean fact sheet (which contains not one piece of positive information about the procedure), VBAC checklist... halfway down the page there's a link to a short FAQ on planning your Cesarean, something about "family-centered Cesareans," and a link that doesn't work but claims to be about breastfeeding after C-section. But to get there, if you're reading down the list, you go through a poem about being DISEMBOWELLED ALIVE (emphasis theirs) and literally more than a dozen articles about C-sections being bad and unnecessary and dangerous.

Yes, I know that there are too many C-sections performed in the United States. But the World Health Organization estimates that the rate should be around 10-15%. That's still one in ten births. Shouldn't there be at least a little bit of positive information out there for those women?

My midwife recommended a twenty-year-old book called The Cesarean Birth Experience. The physical stuff is probably somewhat out of date - although from the other reading I've done, it doesn't seem that much has changed. The sections on emotional and family aspects, and the advice about making your Cesarean as birthlike as possible, are wonderfully helpful and reassuring. But the book's out of print. (I found it on Amazon - it wasn't at my library.)

The single most breathtakingly hurtful thing that I have seen: an offhand comment on a message board, one woman talking about another. "Both of her kids were C-sections, so she's never given birth."

Ow.

My midwife says: "This is still your birth." I'm trying to have that be my mantra.

Since I saw the midwife last week, there is ( new news. )

35-week midwife appointment this evening. Briefly, everything is swell for me and the baby, but my chances of having the kind of birth I want are not looking great.

Let's start with the good news: the L'il Critter is doing so well. She has indeed dropped, and has her head pressed against my cervix. She has a strong heartbeat which speeds up appropriately when she moves, as the midwife determined by poking her little hands and feet. Estimated weight: five pounds, which would put her at about seven pounds on her due date. And of course, she's nicely active - which I knew already, thank you very much.

I'm doing well, too. I'm gaining about a pound a week. My blood pressure is a beautiful 110/68. I have a tiny bit of swelling in my calves and ankles, but nothing to worry about - especially considering that it was an evening appointment. I'm not spilling any protein or sugar. My miscellaneous symptoms are all normal for the third trimester. My cervix is still closed, but it's about 25% effaced (which means that it's starting to shorten and thin for delivery). The baby's head pressing against my cervix should help that process along.

The main event for this visit was the pelvic exam. The senior midwife wanted to examine my pelvic architecture (which is abnormal because of my hip surgeries) to see if I had enough room in there to deliver vaginally. This is the part that didn't go so well.
( Read more... )

lysana recently noted that Google Groups has filled in many of the holes in their Usenet archives - they now apparently believe that they have everything dating back to 1981.

This gives those of us with long-term histories on Usenet the cringeworthy opportunity to go back and see what kind of drivel we posted in our youth. For the most part, it's an opportunity I would rather have foregone (not that I can stop looking now, of course, it's like poking a sore tooth with your tongue). And yet, I also found this:

>: [My sister] felt that the reason that I wasn't happy or content in my job
>: was that I wasn't teaching the "gifted" kids. I guess she felt that I
>: should be using my creativity on "kids who can appreciate you."
>:
>: Do you think that people (teachers) w/ above avg intelligence should
>: use their creativity on smart kids?

>I think smart people have a duty to contribute as much as they can to
>society. (Just like anyone else.) For some teachers this would mean
>teaching smart kids, but for others it may mean teaching average, or even
>disabled (mentally or physically) kids.

Keep that attitude up and someone's going to roll over your toes with their
wheelchair. PLEASE, even among the nerd community, Stephen Hawking should have
made it quite obvious that PHYSICALLY DISABLED does not, in fact, preclude
some measure of intelligence. I was a crippled kid. I was also one of the
brightest kids ever to come through my (admittedly small-town) elementary
school. Now I am a crippled adult and a lot nastier, so don't make slurs
about the intelligence of disabled people or I'll whack you with my cane. [...]

Rebecca
The smartest cripple on rec.org.mensa

Okay, so it's needlessly hostile. And I'm surprised I didn't injure my bad hip further with the severity of the knee-jerking displayed here. Still, I kind of have to admire my feistiness.

I wrote this about six months after I'd been told by an eminent orthopedic surgeon that I would never walk without assistance again. I was struggling hard to figure out what that meant about me as person and a member of society. I was 20. It wasn't the most graceful struggle, but I'm not sure that anyone's would have been.

I saw the orthopedist today for my back and side pain.

( It was awful. )

( pregnancy notes: pain )

I think that other pregnant women's parenting anxiety dreams involve human babies.
( dream content follows )

Yazici Y, Erkan D, Zuniga R, Bateman H, Salvati EA, Magid SK. Pregnancy outcomes following total hip arthroplasty: A preliminary study and review of the literature. Orthopedics 2003; 26:75-76.

McDowell CM, Lachiewicz PF. Pregnancy after total hip arthroplasty. Journal of Bone and Joint Surgery 2001; 83A:1490-1494.

These two confirm what Dr. Callaghan told me after my hip replacement: it shouldn't have any effect on pregnancy, labor, or delivery. One article mentions the possibility of a greater risk of hip dislocation, due to hormonally relaxed ligaments, but apparently this hasn't actually happened to anyone. I would probably want to go back to some of the dislocation precautions I followed after surgery, just in case.

Loder RT. The long-term effect of pelvic osteotomy on birth canal size. Archives of Orthopedic and Trauma Surgery 2002; 122:29-34.

Again, confirms what Dr. Callaghan said - if I have any hip-related complications, they'll be due to the Chiari osteotomy I had in 1993. He said that I had the potential for a normal vaginal delivery, but would also have a higher-than-normal risk of C-section. This article provided a lot more detail: for example, I now know that the C-section rate for Chiari osteotomy patients is 25-30%, which is actually not particularly high. Also, the article provides specific pelvic measurements associated with increased C-section risk after Chiari, which ought to mean that we'll be able to tell whether I'm at higher risk just by looking at my X-rays. So I'm really pleased that I found that one.

I actually don't mind the idea of having a C-section. Surgery doesn't freak me out, obviously, and since I've had pelvic problems all my life, I never really let myself get attached to the idea of a beautiful, natural, low-tech delivery. What I mind is the idea of being designated a "high-risk" pregnancy from the start. I'm worried that the midwife practice won't accept me because they'll worry about my orthopedic history. I have a back-up recommendation - my friend Michelle loved her obstetrician - but I think you get more personal and less medicalized care from midwives.

Rivka: Good morning.
Health Club Clerk: Oh, good for you, you made it in.
Rivka: [silently wonders why this is news]
Health Club Clerk: [takes membership card to scan] I have a friend, she's got multiple sclerosis, and she blah blah blah.
Rivka: Why are you telling me this?
Health Club Clerk: [says more things about her friend with multiple sclerosis]
Rivka: [slightly louder] Why are you telling me this?
Health Club Clerk: Well... what do you have?
Rivka: That's a personal question. That's none of your business.
Health Club Clerk: Oh. But I just...
Rivka: [firmly] It's a very rude question. [walks away]
Health Club Clerk: [calling after her] I'm sorry! I didn't mean to hurt your feelings!
Rivka: [calling back] You didn't "hurt my feelings," you made me angry.
Health Club Clerk: Ma'am, ma'am, please come here. Please accept my apology.
Rivka: [alarmed] Okay, just... okay, don't cry.
Health Club Clerk: [crying] I am going to cry. I've had a really bad day, and...
Rivka: Look, I'm sorry you've had a bad day, but...
Health Club Clerk: Please, please say you accept my apology.
Rivka: Fine. I accept your apology. Okay.

Sheesh.

I just made a much more personal post than usual to Respectful of Otters.

Now I'm freaking out, for reasons which make no sense. I've talked about this stuff on newsgroups and in LJ for years. What makes my blog feel so different?

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