Wednesday, August 27, 2008

And I'm feeeeeelin' ... good?

Strangely, yes. After several days feeling like someone had beat me up in the parking lot, I woke up this morning feeling almost quite normal. I did my usual routine of sleep for 5 hours and wake up, but I think that was more from habit than pain, and I fell back to sleep.

This morning my hips barely hurt, my back doesn't hurt, and my knees don't hurt. It's amazing. AND, I skated for 45 minutes yesterday, working on Novice Moves since Tim is out of town. I skated at medium intensity and so I figured I'd pay for it today, but somehow I'm not.

The past 3 nights I've had trouble sleeping and it has felt as if someone kicked me in the pelvis by morning. My back has hurt almost as much as my hips but I think that is from standing at my desk all day vs. sitting. And my knees have started to bother me, probably because I walk funny and that puts additional stress on them.

I think that I can attribute this episode of feeling good to stretching last night. I didn't stretch overly hard or long, but I did it. I hate stretching and always have. It has always been painful and I've seen very little progress with it. I've always been inflexible even when I've worked hard at it. This has caused me to hate ballet class where they keep telling me to do things I can't, and to hate stretch class and yoga class where I am the only one who can't touch my toes or bring my knees to my chest.

I even hired a personal trainer once to work on stretching with me. She said I was "the least flexible young person" she had ever seen. Stretching for me has always been a losing battle. Now in middle age I'm only going to get less flexible, so while stretching won't improve me, it may keep me feeling better than I would without it. So I need to make time for it even though it hurts and I hate it.

Other things that I'm learning about myself:

I have very overdeveloped glutes. This is called a "skater's butt," but I have more than the usual amount of it. I have the mega butt, which contrasts enough with my very small waist that I can't find clothes to fit. I always thought the butt was due to skating, even though it persisted during those two decades when I wasn't skating (although I was doing other athletic activities). I wondered why I got so much of it even though as a kid I really wasn't training heavily compared to many and I wasn't an elite skater. I had no body fat either back then so it was just very, very strange and oh, so ugly.

Now I think it's the mechanism my body has used to compensate for the weakness in my hips. I think the muscles around the hip joints have atrophied and the glutes always made up the work load. This is also why I found that I was very weak doing certain exercises that everyone else found easy. I just didn't have the structure for it and the muscles couldn't get strong no matter what. The biggest muscles in my lower body picked up the slack for all the rest.

This is all amateur science and conjecture on my part, but would certainly make sense if it were true. I can't find anything in the medical literature stating that people with acetabular dysplasia develop large glutes, but perhaps it depends on which athletic activities they pursue. My body has been trying to do the things I ask of it, skating-wise, with a structure that is more suited to couch potato-hood, and since I insisted, it compensated.

Well, all this aside, today I am feeling good so I plan to take advantage and paint the closet in the bathroom.

Monday, August 25, 2008

Speak softly and carry a big stick

My new sidekick: A wooden cane that my grandparents brought back from Mexico 30 years ago. It was in my parents' basement so I borrowed it for a test run.

Some problems with carrying a cane:
1. It's hard to carry other things since you only have one hand free! I must get a backpack since I carry a lot of stuff most days.
2. It's unwieldy. I have already wacked two people with it and not on purpose. It falls down when I lean it up against things. It's easy to trip over if I leave it lying around.
3. It's heavy.
4. It attracts attention. OK, look, I know I could mitigate this issue by getting something plainer; my cane has intricate carvings painted in bright colors. But my grandfather used this cane for years and it has sentimental value. Plus I'm cheap. Why buy a cane when I already have one?

I now have some level of pain pretty much all the time. If I sit for long periods of time my hips start to ache. When I first get up, I'm too stiff to move for a few moments. I can still sleep but only on my back. This doesn't hurt my hips but it does hurt my back. I figure eventually it will hurt my hips too, it's just a matter of time. I can't lie on either of my sides.

Walking hurts, although after I get going it hurts less.

Skating hurts.

Standing, sitting and lying down all hurt most of the time.

It's a tolerable hurt right now -- a dull ache and not a sharp pain. I am not taking pain medications until I have to. I'm not big on meds. NSAIDS can cause kidney damage and I'd rather have some pain now than kidney disease later. If I have to start popping an Advil now and then I will, but I want to delay that as long as possible. I want to know how bad it is, not mask it.

I am hoping that the pain will be tolerable through this skating season. I can then do something about it. I have an appointment with the periacetabular osteotomy guy Oct. 30 (I still can't believe the lead times for doctors). PAO does not sound promising, however. It sounds horribly painful with a long recovery time. A week in the hospital, and no weight bearing for months. The pain is akin to a broken pelvis, because that's what they do, break your pelvis. Hip replacement/resurfacing sounds less painful with a much shorter recovery time. However, the life span of those methods is limited (10 years? 20? who knows really) and the PAO may postpone the need for them -- or eliminate the need for them altogether.

When I read about the limitations post-surgery, PAO also sounds worse. I can't skate if I'm constantly thinking about what I can't do. I don't want to skate if my toes turn in and my extensions look like shit. I have worked all of my skating life to fight my lack of turnout and now I am at the point where my legline looks decent. To give all that up now just because I'm in some pain sounds silly. But if the pain increases it probably won't be so silly any more.

That's PAO though. Hip resurfacing will allow me some turnout; perhaps more than I have now. It's just the limited lifespan that worries me. I plan to live a long time and don't like the sound of 2 revisions in my future. But it seems multiple surgeries of some sort are inevitable. It's just a question of what. And when.

Thursday, August 21, 2008

Hurry up, and wait

I am 45 years old, and I'm in pretty good shape. I've always been athletic, I dress fairly "young," and thanks to skating I've stayed out of the sun, mostly. So I look my age and by some accounts much younger (depends on the light level, the distance of the viewer, and the number of alcoholic beverages the viewer has consumed). This information will make sense as this story unfolds.

At work I walk fast, I take the stairs most of the time, and I'm usually walking around the office vs. sitting around. Well, up until recently anyway. Now that I have difficulty walking, I tend to walk much slower than before - noticeably so - and I have a lumbering and unusual gait until I get "warmed up." I can't always sit for long periods of time (I am getting a "sit/stand" workstation shortly).

So based on the fact that I look youngish, healthy and fit, people make certain assumptions about me. Like, if they hold the elevator for me, that I will pick up the pace so they don't have to wait. But I don't pick up the pace any more, and this has caused some people to roll their eyes and give me hostile looks. "Come on, we're waiting for you, the least you could do is hurry up!" "Hey lady, you're wasting my time!" That is what those looks say to me. Now I just wave to them from 20 feet away and say "go ahead, don't hold it for me." Let them think I'm lazy or don't care.

I took the elevator up one flight of stairs the other day, something that I have never done before, but the thought of climbing the stairs was just unnerving at the end of the day. I could almost see people shaking their heads as I got on the elevator on the 10th floor and off on 11, and I imagined what they said after my departure. "What a lazy ass!" "She's the reason our health premiums are so high!" "Wow, she doesn't even look like she feels guilty for wasting energy!"

I realize that I'm projecting my thoughts on other people, and whether the dirty looks are real or perceived, I'm probably imagining some of this. Is this how my own guilt and embarrassment over my new condition is manifesting itself? I'm not really sure.

I am thinking of borrowing a cane. Not that I need it quite yet, although I may need it soon. But with a cane in my hand it will be obvious that I am not just walking slowly because I'm lazy, but because I have a medical need to do so.

It's sad that I feel I need a "prop" in order to walk slowly and stiffly in my office without embarrassment. But I've always prided myself on my athleticism, the fact that I can walk anywhere on my own two feet, my independence. Perhaps I'm dreading the day I lose all of that independence temporarily after surgery, or for good.

I work for a disability insurer. We always tell people in our marketing materials that the risk of disability is higher than they might think. As I wrote those materials, I never thought that I might be one of those who became "disabled" - in my 40's -- after all, I eat right, I exercise, and I wear my seat belt. And here I am, feeling a little bit more disabled every day. I look at the things I've given up over many years and more recently (jumping on ice, which I had just started back to; running for the elevator; hiking; walking unless I have to). I am not truly disabled since I can still work at my desk job with accommodations. But I feel disabled nonetheless. Disabled from my life, the things I enjoy doing and the things I have always taken for granted. It is a sobering experience.

Friday, August 8, 2008

A bad day and a good day

Yesterday I experienced the worst hip pain yet. At work, I couldn’t sit down, so I stood up. However, if I stood too long my back started to hurt, so then I sat down. After about 10 minutes of sitting my hips ached. I kept putting my heat pack on but the pain was all over so it was hard to do anything useful. I stood up, then I sat down, all day long. It was frustrating and unproductive.

I went to a friend’s dinner party in the evening and again, couldn’t sit for long and couldn’t really stand, so I “mingled.” I walked around and around and talked to everyone several times. Walking helped my pain if not my social life.

Sleeping was a major problem for the first time ever. I have been sleeping OK, although I can’t lie on my right side for long (the right hip is more painful than the left). Last night I couldn't lie on my back or on either side, and I can never sleep on my stomach. So I really got about 4 hours of intermittent sleep, tossing and turning. When the alarm went off at 5:30 I was ready to go directly to the hospital and sign up for the earliest possible THR surgery.

Instead I went to the rink for practice, figuring it was a lost cause due to yesterday’s pain and my lack of sleep. However, nothing hurt from the time I got in the car. I had an almost pain-free practice despite one fall on my butt (which I’m sure I’ll feel tomorrow in my lower back) and now I’m sitting here in my chair at work with not a single problem. While yesterday the only thing I could think about was how painful everything was, today I am able to go about my activities without giving my hips a second thought.

If I were an optimist I’d say perhaps I’m cured, but unfortunately I know better. For now though I plan to enjoy this, and maybe even get some sleep tonight.

Thursday, August 7, 2008

Thank yous

Thanks to all who have written me privately. The response has been truly overwhelming. It upholds my belief that ice dancers (and adult skaters in general) are some of the friendliest, kindest and most caring people in the world.

I am over my shock, anger, depression and denial (I think there are 4 more steps but now is the time for action so I’m postponing those). Tim and I have been skating, albeit a bit cautiously. I’m walking slowly and sitting gingerly but I’m not out of commission yet.

There are some encouraging surgical options out there (possibly not covered by my insurance company as they are considered “experimental,” but I really need new hips more than I need a remodeled kitchen) and so I am not giving up. Many of you out there are skating on artificial hips and I have been so encouraged by your stories.

I need some time to process all of the information I’ve received. I’ll keep everyone posted. Terri

Tuesday, August 5, 2008

Possibly Cathartic, Probably Immature,

...and Definitely Angry.

This is an addendum to my post from earlier today regarding my recent hip problems. If you haven't yet, please read that post first.

I realized today that my hip deformity has caused physical and emotional problems for a long time, even though I had no idea that I had this defect until today. This evening while feeling sorry for myself I recalled some of these problems; it is not much comfort now to know the reason behind them but I feel I should list them here for posterity.

I remember in Kindergarten when we were being read to, all of us kids were told we must sit "Indian Style" for 30 minutes (Not such a PC term now, but I'm sure you all know the position I mean.) At age 5 I could only sit that way for a few seconds before my legs started to shake and hurt. My femurs naturally rotate inward, not outward, and so I could then (and still now) more easily sit with my upper legs together with my lower legs turned out in "W" position.

I remember being told that we MUST sit for the half hour reading period INDIAN STYLE, and I was corrected by teachers, publicly, over and over again for being unwilling to sit that way. (Somebody explain the mindset of these Kindergarten Nazi Bitches to me ... I am at a loss.) Sometimes it hurt so much that I would cry. I remember the teachers scolding me for being "a baby" and "disruptive." Nobody thought it was a medical problem; who ever heard of a 5 year old who couldn't sit "Indian Style"? They never told my parents or sent me to a doctor, just strongly suggested to me that I was a bad child. Needless to say, children being the savages that they are, I was picked on mercilessly for being such a loser. Perhaps that's the starting point of some of my more interesting personality quirks.

Kindergarten teachers of mine, if you were here right now you'd be appalled at the highly disruptive and disobedient gesture I'm making in your direction with my middle finger. That's right, this is my blog, and I can do that if I want to. Nyah nyah nyah.

So I didn't see a doctor for the x-rays that would have made it obvious that I needed corrective surgery which, at that young age, would have prevented so many problems I've had since. Problems such as being unable to ride horses, something I love to do, because I can't walk for weeks afterwards due to my stiff and sore hips. Problems such as being yelled at as a teenager by skating coaches because I couldn't do an Ina Bauer (obviously not trying hard enough, probably lazy and bratty to boot). Problems such as difficulty in my late 30's riding a bicycle for more than a mile because my hips hurt (I chalked it up to being out of shape at the time and never rode a bike again). Problems walking over the last 3 years that I attributed to arthritis and old age which have caused me to groan like an old man as I get up and walk stiff-legged after getting up out of my chair at work, which co-workers have found amusing; I did too until it got so bad I realized that it wasn't normal.

{Addendum -- 8/8/08 -- my research reveals that periacetabular osteotomy, the surgical procedure used on children and young adults, was pioneered in 1984, so unfortunately it would not have helped me as a Kindergartner in the late '60's. However, I still wish I'd known about this problem earlier.}

Now it appears I may be too old for that type of surgery, leaving me again with the double hip replacement scenario as my only option, along with a lifetime of memories of things I could never do, or can no longer do, or stopped doing a long time ago.

Yes, I'm feeling sorry for myself, but this is my blog and I can say whatever I want to. Nyah nyah nyah.

Hip, Hip ...

You thought I was going to say “hooray,” didn't you! Fooled you.

(Note that this post was originally published on my skating blog, tntsk8.blogspot.com)

I wasn’t going to post about this, but I’m hoping someone reading may have advice for me. My diagnosis today is acetabular dysplasia, a congenital hip deformity. (German Shepherds often have hip dysplasia, so let the dog comparisons begin.) In this abnormality, the socket of the hip does not surround the ball of the joint as it does in a normal hip; those with this condition inevitably have pain, which progressively worsens; they develop arthritis, and eventually need full hip replacement. The edge of the bone may more easily fracture since it is not stable.

Of all the sports to participate in, according to the doctor, skating is just about the worst. Running or other high-impact sports would be the only things that could be worse. The doctor, I must say, was pretty unsympathetic; even though I described how I participate in the sport of ice dancing and what that entails, he clearly thought that my skating was just any old activity because, let’s face it, I’m 45 years old and most people can’t picture us old farts skating any way other than round and round the rink for exercise. I described lifts, and ballroom dancing on ice, etc. but his answer was that I’d need to find a different activity, such as swimming, or no activity at all, which would be easier on my joints. He didn’t seem to understand that skating isn’t just going around in circles; skating is my one and only creative outlet. I've never found any other type of exercise I enjoy as much.

He gave me the name of a specialist and said good-bye.

I did some Internet research and it was then that I realized that for a skater, this was one of the worst possible diagnoses. There are many other career-ending diagnoses of course (knees, head trauma, backs) but this is right up there with the more commonly-seen injuries. The fact that I was born with this and skated for so many years without symptoms, all the while a ticking time bomb, makes this even more difficult to swallow. I will admit that I’ve shed some tears today in the bathroom at work and in my car.

The Internet says that once someone has pain from this condition, the arthritis sets in quickly, so surgery is indicated right away. As the condition worsens, the outcome of surgery is less and less likely to be positive. While there are many people who skate at a high level after hip replacement, I shudder to think of the many ways such a major surgery can go wrong, and that surgery won’t necessarily mean that I’ll be able to skate again at my current level – or walk for that matter. There are no guarantees.

I have always been healthy and never had surgery, so I’m also fearful of the process. Even giving blood is a trauma for me since I have rubbery veins, so the thought of being hospitalized for 5 days or more is truly frightening. I’d almost rather just let the arthritis take its toll, until I think of the true consequences of that. Doing nothing and continuing to skate until I can’t stand the pain any longer is an option, but then I may not be walking when I’m 50. Having surgery which isn’t successful seems like a worse option.

The internet shows that 17% of people having the surgery are able to function at the same level as before when it comes to “athletic activities”; another 37% are able to function well enough to “ambulate.” Those numbers seem particularly disturbing to me. Hip surgery is great when it allows an elderly person to continue functioning so they don’t have to be wheelchair bound. Hip surgery that means I won’t be able to skate any more does me no good at all, and seems like quite a trauma to put myself through.

An aside - this explains why I could never do a spread eagle or an Ina Bauer, despite being able to do Biellmans. Typically people with this type of dysplasia have very little hip turnout, and no amount of stretching can change that - it's just physically impossible for the hips to move that way. To think of all the time I wasted doing plies, pilates, and various other stretches to improve my turnout which never seemed to improve ... and to think of all the coaches who told me I was "just not trying hard enough" to do that Ina Bauer. Well, it's vindication all right, but somehow THAT doesn't feel very good right now.

I’m in a little bit of shock right now since this was not the diagnosis I was expecting (I was hoping more for "you pulled your groin, now rest and ice it for a month then you will be good as new"), but I need time to process this and figure out what I am going to do. Readers, I already know I have your empathy. If any of you have constructive advice, I could sure use some now.