New Year

Perry and Blue say, "happy new year!"

As we bid farewell to 2008 and welcome 2009, I am in the kitchen baking a marzipan cake for the new year (a family tradition).

In my two blogs I've focused on skating and hip issues, with the occasional toilet discussion thrown in for good measure. I haven't talked in detail about my family, politics, the economy, or a number of other important issues. It's not that I don't care about those things, it's just that the purpose of these blogs is fairly narrow. But on new year's eve I feel justified in branching out a bit.

Family: Our parents are in good health and we see them often. My sister and brother-in-law live close by. Perry's boys, my stepsons, are doing well. Aaron is a senior in high school and busily applying to college. Isaac is a freshman in high school and busy with many activities. My stepdaughters are also doing well; Melanie is married and living on the east coast while Ashley is in Ft. Collins in the pre-veterinary program at CSU. I'm proud of all the kids and I know they will all be successful in their many endeavors.

Perry has been supportive of my skating, hip issues, and life in general. As he will readily admit, I can be "high maintenance," but he puts up with my shit and I try hard not to give him too much of it. We still enjoy each other's company after 5 years, and I couldn't ask for a better husband.

Friends: I am grateful for having so many of you in my life. Those of you I count on the most -- Kianoosh, Larry, Linda M, Mary, Marilu and Tim --- I couldn't ask for better friends. Through Facebook I've reconnected with people from high school and beyond which has been fun and enlightening. I'm not generally good at "keeping in touch" so I really am thankful for Facebook, even though it can be a time waster.

Home: We've put our renovation on hold for now. Until I know the status of the insurance payments for my upcoming surgeries, I really can't justify spending money on a new kitchen and guest bath. It's frustrating, since we really wanted to get this house done this year. The kitchen and bathroom are functional but ugly, so there are worse fates, but I can say that if the insurance comes through, we'll be renovating next year, to be followed by a big party. If the insurance doesn't come through I think we will still have the party anyway.

Pets: 2008 brought our family sorrow and happiness. We lost our faithful and beloved 18-year-old feline companion, Toulouse, exactly one year ago today. Miss Blue, an abandoned cat who we noticed hanging around our yard, moved in to the house on thanksgiving and has quickly become a member of the family.

Blogs: Thank you all for reading, and for commenting. Blog readers include friends, family, fellow ice dancers and fellow hip chicks. In 2009 I'll continue to report on the good, the bad, and the ugly as I see it. I hope readers continue to find this blog informative and entertaining.

Be safe, be healthy, be happy ... hug your loved ones ...and don't drink and drive!

Terri

More gear

You'd think I was having surgery tomorrow by the way I am stocking up. This is what happens when you combine strong project management skills, a controlling personality, and after-Christmas sales. It's just too much for me to resist.

So over the weekend I bought a few things, including a teakwood shower stool for the inevitable seated showers, some non-slip socks, a new duvet cover (I will be spending a lot of time in bed, come on), and some posh new jammies (for all that time lounging in bed).

The shower stool is from Smith & Hawken and it's a nice looking addition to our newly-renovated master bathroom, if I do say so myself. I looked at all the plastic and metal versions and just couldn't stomach the thought of spending approximately the same amount of money for something that is so butt ugly. I've heard that I should get a shower chair with a back, and mine doesn't have one, but I can lean against the shower wall. OK, probably not the most practical and I may regret it, but I promise to get a proper plastic raised toilet seat when the time comes. I don't think Smith & Hawken makes one anyway.

I guess I should try the shower stool out, but how will I simulate the experience of being post-PAO? I can't get my hands on narcotics without breaking the law, but I suppose I can get rip roaring drunk on New Year's eve, immobilize my leg somehow, and see how it goes. I could probably sell tickets as well - standing room only! I can fit about 6 people around my glass-walled shower stall. Tickets will be expensive because I am trying to finance two surgeries; stay tuned for details.

Meanwhile, another hip chick has posted this fab link on her site:

http://www.fashionablecanes.com

While I have yet to purchase anything I am very tempted. This site is also a good resource on how to correctly size a cane and how to walk with one for those who are new to this hip thing. Yes, it's sad that we young dysplastics all eventually become such experts in geriatric devices like shower chairs, raised toilet seats, walkers and canes.

In fact, I have noticed that most adult-aged diagnoses occur either in the 29/30 age range (how many blogs have I read where people were just about to turn 30 either on their diagnosis day or right before or after surgery?) or, for us late bloomers, at 45. I haven't read any blogs that talk about a diagnosis at age 37 or age 41. It always seems to be 29/30 or 45. Interesting.

(I'm sure I am going to get a bunch of comments from those diagnosed at 26-and-a-half, and 48, and 39 ... I know you're out there as this was not a scientific study, just my recollection after reading a lot of blogs and posts on the Yahoo list. I'm just saying.)

Explain to me again how this is saving water?

I have lost about 5 pounds in the past couple of weeks. I attribute this to loss of muscle, mostly because I can't exercise as much as usual. I haven't had such a dramatic weight change since losing 190 pounds of unsightly fat back in 2003, when I divorced my first husband. But I digress.

In an attempt to be as healthy as possible pre-surgery, I've been eating sensibly and drinking a lot of water as well. All of that water has to go somewhere, and so I've spent some quality time in the restroom lately. And that leads me to today's topic.

The concept of a toilet which flushes automatically intrigues me. You know what I'm talking about, right? You don't have to flush these beauties because they take care of the dirty work for you. I am not exactly sure what the point is though. It may have something to do with hygiene, perhaps, since not having to touch that disgusting handle is a major step in the right direction. But clearly there must be a cost to installing them, and thus there must be a cost savings involved, or else entities like airports wouldn't bother.

We all know that, in public, people often "forget" to flush, causing major backlogs and grossouts in the stalls. Perhaps the cleaning crew charges overtime for this, and the cost savings come into play there.

Nah, I don't buy that.

Maybe these toilets save water in a way that I'm just not understanding. Although even if they worked as designed, it seems they'd use more water than the old fashioned commodes because they flush every time, whereas we know that people don't flush every time when they have to do it themselves.

Problem is, these toilets don't work as designed. Nope. In fact, my theory is that the airport gets a kickback from the water department for every one of these uber toilets it installs, since they use FAR MORE water than a normal toilet. Variations of the following scenario have happened to me more than once, most recently during my trip to Lake Placid.

I hobble through the airport with my carry on and large puffy down coat, and find myself in need of a pit stop. After walking past about 20 gates I see the ladies room ahead of me and duck inside. I stuff myself into the tiny stall and come face to face with one of the newfangled toilets.

Since I am wearing a long coat, I take it off and hang it on the hook in front of me, but as I do that the movement of the coat evidently sets off the motion detector and ... fluuuuuush ... goes the toilet. A few drops of water end up on the seat. I hang up my cane and put my bag on the little shelf, and oops, the sensor is tripped again. FLUUUUUUUSSSSSHHHH!!!

More water gets on the seat of course, so I turn around and wipe it off with some toilet paper. Of course you all know what happens next, because this too sets off the motion detector and yet again, the toilet flushes.

I pull out one of those sanitary toilet covers and place it on the seat, carefully so as not to ... oh hell, of course you have already guessed that this sets off the motion detector and the toilet flushes, pulling half of the sanitary toilet cover into the bowl.

I am annoyed now and realize it's time to just do my business and get the f*** out of there. I step as far away from the bowl as possible so as not to set anything off, and carefully, slowly, holding my breath, unzip and de-pants myself in preparation for sitting down. I slowly back up toward the toilet, and I'm just about to sit when ...

FLUUUUUUUSSSSSSHHHHHH goes the toilet, throwing up more drops of water. I slam myself down and "go" as quickly as possible, praying that I won't be flushed on in mid-pee. Thankfully I make it, stand up, zip up, and gather my belongings while waiting for the inevitable final flush. Silence.

I move around, waving my bag toward the sensor, and shuffle my feet a bit. No flush. I do a little dance in the stall, shimmying as close to the sensor as possible in order to set off the flush response. Silence.

I stare at the toilet, realizing that I am now required to push the little red button hovering over the bowl. This means that the hygiene benefit of the automatic toilet is lost on me, along with whatever water saving functionality this monster is supposed to provide. Sigh. I lean forward and push the button. Nothing. Evidently I've exceeded the maximum number of flushes or something and the damn thing is now taking a "break."

Sheepishly I exit the stall, hoping the next occupant doesn't think I'm some sort of pig who doesn't bother to flush. No such luck, the woman waiting next in line sees the situation and gives me a dirty look as we pass one another. There's no point explaining of course. She'll find out the disturbing truth soon enough.

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(Post Script: Turns out you can buy one for your own home!
http://www.itouchless.com/share/cgi-bin/site.cgi?site_id=itouchless&page_id=sensorflush)

Lost in PDX

Here are the highlights of my trip to Lake Placid:

~The rubber tip of my cane fell off on the first leg of my flight, and by the time I figured it out it was too late to go back and get it as I was "running" (those of you pre-PAO know that "running" is the euphemism for "hobbling a bit faster than usual") through the Atlanta airport, trying to make my next flight. Atlanta - now that's one big airport, especially if one is hobbling.
~Traveler's "Tip": Always carry a spare tip. Wooden cane without rubber tip on marble floor does not make for a stable walking aid! In fact, it's rather useless and just served to get caught in my coat and backpack.
~When I arrive in Lake Placid I have to explain to everyone who hasn't seen me yet what the cane's all about. Helpful yet annoying acquaintence tells me my upcoming hip surgery will be a piece of cake. "A friend of mine had both of hers done at once and was back in action a couple of weeks later." A few repetitions of, "I'm not having them replaced" did not get through ... I finally resorted to the tried and true, "they are breaking my pelvis in 3 places" ... Blank look ensued. I smiled and went to get some hot chocolate.
~I am told by everyone that the hotel is a "short walk" from the rink. This "short walk" is downhill on snow and ice and I have a cane that is broken. The able-bodied judges, some twice my age, walk to the rink while I wait for the shuttle. Alone. Pathetic. Feeling sorry for myself.
~Shuttle passes the others, who look mighty cold out there. I smile smugly from the warm heated shuttle seat. Perhaps there is a silver lining after all.
~My husband calls from home to tell me that my handicapped parking papers have arrived in the mail. Yee haw, I will be able to go to the mall before the holidays!
~On Sunday I am scheduled to leave on the 5:15 AM shuttle for the two hour ride from Lake Placid to Albany to catch my 12:45 flight out. Um, OK, I guess sleep is overrated after all. The later shuttles all appear to be full so I half-heartedly set my alarm for 4:15 AM.
~I'm on the shuttle on time. It's one of those big tour buses. Thankfully there is a bathroom. However, the heater appears to be broken. I attempt sleep in a half frozen state and eventually give up and listen to the guy behind me snore. The scenery in the Adirondacks is beautiful, but this early in the morning it's too dark to see much.
~I am in first class on my flight and finally able to sleep after a couple of Baileys!
~I arrive in Portland to the rare winter storm which has shut down the city. After traveling all day, all the way across the continent, I am halted within 20 miles of my home and have to spend the night in an airport hotel room. The lesson learned - always pack an extra pair of underwear just in case you are stranded for an additional night. Thankfully I learned this lesson on a previous trip and I was well prepared.
~Screaming children run up and down the hotel hallways into the wee hours. The people in the room above me appear to weigh a lot and walk around the room dragging tree trunks or dead bodies, and/or jump on and off the bed, until midnight. Is this my destiny? Do these loud hotel people follow me around every time I travel somewhere? I swear I am not making this up.
~The next day dawns bright and early. My office is closed due to weather, which means I can spend most of the day getting from the airport to my house. I take the hotel shuttle to the airport, take the parking shuttle to my car, drive my car downtown and park it at work, wait for the bus for an hour and a half (temperature = 18 degrees, but note that it's really zero degrees with wind chill). I know my car won't make it up the ice covered hill to my house without chains, and the last time I left a car at the bottom of the hill and walked up, someone smashed into it. Thus I am leaving the car in the lot downtown. I would rather bus it and walk than deal with that hassle again.
~Buses are on "snow routes," which means they come sometimes, maybe, on occasion. I ride bus 51 which shares a stop with bus 15. Within 10 minutes, four (FOUR) #15 buses come and go. None carries more than a few people. Where is the 51? Can't someone simply reverse the damn digits and give me a 51 bus? I'm freakin' freezing out here! And hey, I have to pee, but I am not going to do that because if I do I know the bus will come while I'm in there.
~The 51 finally comes (I've been standing outside waiting for over an hour and oh by the way, I walked 10 blocks to the bus stop) (and 10 blocks may not sound like much to those of you with normal hips but for me it is about 9 too many), and today the bus is on "alternate route" status which means it goes everywhere it would on a normal day, except near my house, and so I realize it is going to drop me half a mile from my house vs. a few blocks away. I get on the damn bus anyway because what else am I going to do?
~I realize that I am not supposed to walk, much less on ice in subzero temperatures, for half a mile. Oops. Oh yeah, I'm disabled. Forgot about that. And did I mention I never had time to get the cane fixed? It's going to be pretty useless.
~Bus drops me off, I walk the half mile (very slowly) ... the standing in the cold waiting for the bus made my hips hurt, but the walking on ice is making them REALLY hurt. I am almost home, but then ...
~I live on a narrow winding steep two-way road which is only about one car width wide. We call it the Goat Trail. I realize I may have to slide on my butt down the iced over goat trail to get home. Luckily I am able to remain vertical, but it takes a very long time to negotiate the icy slope.
~I arrive home to a roaring fire and needless to say, run for the bathroom. It takes about 2 hours to thaw out.
~Next trip: Cleveland in January, oh joy. Another icy cold adventure awaits, but at least I know I'm up to the challenge.
~There's no place like home!

P.S. - I would like to write about my ongoing adventures with that marvel of modern machinery, the automatically flushing toilet, which is available in fine airports all across America, but that will have to wait for another day. It's a topic I've wanted to write about for a long, long time, so stay tuned. It's bound to be a very special post, and just in time for the holidays.

Thank you, Dr. Tennant

I re-read my very first couple of posts here today. Yes, I'm talking about those shocked and angry posts that I wrote post diagnosis. At the time I was pissed off about how the orthopedist, Dr. Tennant, gave me the bad news. I was particularly peeved that he had told me I had to quit skating, as if he were telling a diabetic to lay off the candy. I was angry that he assumed skating was a trivial part of my life. I was angry that he thought swimming or elliptical training could take the place of skating for me since they all were "exercise." I was angry that he didn't react with any empathy to my distress over this catastrophic new state of affairs in my life. I was angry at his monotone delivery. I was angry that he had no other answers for me.

Well, I am still skating of course (shhhh, don't tell). I am not jumping and never will again, but my primary focus has been ice dancing, not freestyle, so really it's no great loss. The fact that I took up jumping again on a whim a few weeks before my diagnosis tells me that flirting with freestyle probably exacerbated my condition. But that realization isn't what's prompting me to post today.

I have read so many accounts of people with hip dysplasia being misdiagnosed. This seems odd to me since even I can now look at x-rays and diagnose hip dysplasia. OK, I'll admit that I'm no expert, but it seems pretty obvious to me. As poor as his bedside manner was, I have to thank Dr. Tennant for correctly diagnosing me, for knowing about PAO (it amazes me how many orthopedists have never heard of PAO) and for referring me to one of the best specialists in the country for hip dysplasia and PAO. I realize now that I could have been misdiagnosed, given bad advice, subjected to surgeries which would not have done any good, or perhaps told that nothing at all could be done.

Had I been told nothing could be done, I may have waited years until my arthritis progressed to the point that nothing really could have been done. As it is, my dysplasia is severe but my arthritis is mild. I am the kind of person that PAO is most likely to help.

Dr. Tennant, I didn't like you very much in August. I guess I wanted to shoot the messenger, and I will say your delivery leaves something to be desired. I have to thank you though for pointing me in the right direction. The alternatives would have been far worse.

Hip Travels

I just realized that I'm going out of town next week by myself. On an airplane. To a place with lots of snow.

Yikes!

I hadn't even really thought about it since in the past I've traveled a lot on my own. But now I realize that I'm going all the way from west coast to east coast with a layover in the middle, then catching a shuttle for a two-hour ride to my destination in Lake Placid. All with luggage. Lots of luggage. We're talking big huge down coat, snow boots, hats, etc.

It didn't even occur to me when I booked this flight that I might have to walk a long way from my arrival gate to my departure gate during the layover. That has never been an issue before, but now it is. Should I get wheelchair assistance? OMG, I can't even go there yet. Maybe I can ride on one of those motorized vehicles. When I get to Albany, how will I negotiate my luggage by myself? My last trip (first with cane) included Perry to help me; this time I'm flying solo.

Lake Placid is a winter wonderland in December. I sure hope that they are providing door-to-door service from hotel to rink because I don't want to walk in all that wonderland. I can't believe I'm actually saying that! I can't believe I'm afraid of falling down in the snow and ice but I am, more from the perspective of embarrassment than possible further hip damage. After all, I skate and I'm not afraid to fall at the rink. But who wants to see a lady with a cane fall down? Who wants to be known as the lady with a cane who fell down? Worse yet, who wants to be known as THE JUDGE WITH A CANE WHO FELL DOWN? I get a headache just thinking about that. The skaters already think we are too old and decrepit as it is.

I am sure I'll do fine. I'm just realizing though how much more difficult life has become, and how much I used to take for granted.

P.S. - I know those of you who have traveled home by airplane after being discharged from the hospital post PAO surgery are laughing out loud and thinking, "Ha, you ain't seen nothin' yet honey!"

It's official ...

I'm depressed.

I met with a counselor from my employer’s EAP on Monday. She told me that I am “grieving,” that my response is normal, and that it is going to take a long time to come to terms with things, accept them, and transition to my new life circumstances. I have been going through all the classic phases of grief – anger, denial, bargaining, depression, bitchiness, crankiness, sarcasm, uncontrolled swearing, and whininess. OK, see, I still have my sense of humor. Kind of.

It was good to have a professional validate my feelings. It’s OK for me to feel crappy. If anyone tells me that “it will be all right” or “other people have it much worse than I do,” I have a right to slap them silly and walk away. I know other people have it much worse than I do. That doesn’t mean that I don’t have a right to feel pissed off about my own rather crappy situation.

Throwing fuel on the fire, I’ve been in contact with my surgeon’s office trying to understand WHY Aetna doesn’t cover PAO. They have not given me a very good reason and I need to understand so I can take action. In typical condescending doctor’s office speak, they told me to butt out and let them handle it. They also told me, in exactly these words, that I am “not the only patient feeling the financial pressures.” Duh. My response was that I am operating on the concept of "you have to look out for yourself and your own health care because nobody else will." It’s not that I don’t want to help all of the other people feeling the financial pressures out there, but right now I can only fight for myself. It's called the survival instinct.

So who out there is curious about why Aetna denies PAOs? It’s not what you think. No, it's not that they can't spell "dysplasia." It’s not that they don’t like people who walk funny. It’s not even that there haven’t been enough research studies done. No, according to what I’m hearing, it’s because there is no procedure code for this operation. Doctors bill it using the code 27299, which means “unlisted procedure.” And, seeing that it’s "unlisted," Aetna promptly denies it.

What? Are you kidding me? This has to be the most asinine thing I have ever heard. Does this mean they don’t even read the file to find out what was done? They see that something “unlisted” was done and they just say NO? Please, give me a break. Based on all of the hip women I know, quite a few of these procedures are being done. Can’t the insurers and doctors, ahem, let’s see, I need to think really hard about this because I’m not as smart as they are… can’t they just CREATE A CODE????

WAIT, I know, maybe it’s a computer programming issue. Maybe the computers need the codes to be 5 digits, and all of the digits between 00000 and 99999 have already been assigned. That must be it. We’re out of codes! There are no more! So, medical scientists, you might as well stop doing any research or coming up with new operations and procedures, because when it comes to coding them you are SOL.

Of course I don’t really think that’s the issue, but I can’t comprehend what the issue might actually be. Someone help me out here. How fucking difficult can it be to create a 5-digit number?

The doctor’s office also told me that they won’t schedule any more surgeries until they either have authorization in hand from the insurance company OR the patient signs an agreement up front promising to pay cash for the surgery (at the bargain cash price of $70,000 for each hip). I told them to keep my July date and that yes, I’d pay cash if I had to. Send me the agreement and I'll sign it.

OK, so after this news, I decided it was time for the icing on the cake of my day … looking at my retirement funds and figuring out if I have enough money to pay for this. My retirement funds have taken a huge hit. I guess that should not be news to anyone reading this since I've recently discovered that "I am not the only one feeling the financial pressures." Could the timing for this be any worse? We're in the middle of the worst recession since perhaps the great depression and I need to sell investments?

All three of my retirement vehicles are down, way down, but the good news is that if I cash out right now, the funds I have accumulated as a result of the last 25 years of living frugally so that I can fully fund my retirement will be enough to pay for two surgeries, with a little left over to buy some new underwear. My life savings can get me my PAO. And, by July of next year, who knows, the market may go up!! Or, it may go down and I'll have to forego the underwear!! I have no idea!!

Just when I thought the day could not get any worse, I talked to H.R. at my employer about the logistics for taking a hardship withdrawal from my 401(k). I explained the situation. I told them that I was not pleased with our medical plan's policies. Here, verbatim for your amusement, is their reply.

“Terri:
I'm so sorry---it sounds like a difficult time. {EDITOR'S NOTE: NO KIDDING}
It's true medical plans do not cover all services. The good news is that according to our benchmark surveys, most employers have increased deductibles, premiums and co-pays this year. Our plans have none of these changes this year. While the plans won't cover everything, we're working hard to help you maintain the best coverage possible.”

What, medical plans do not cover all services? No Shit. It’s not like I’m asking them to pay for botox injections, for crying out loud. This is a real surgery, for a real condition, causing real pain and disability. It is not elective. It is not experimental. It is not optional for me.

But thanks guys, thanks for the great news! I’ll sleep so much better at night knowing that my deductibles, premiums and co-pays will not be increasing this year, even though the plan won’t cover everything … in fact, the plan won’t cover ANYTHING that I need, but at least it won't cost me more. And best of all, I GET THE BEST COVERAGE POSSIBLE. Yee haw! Party time! Pardon me while I PUKE and SCREAM and CRY and SWEAR.

It’s all part of that grieving process I’m going through.

I’m over 40 … and my timing stinks

A new study was published which concludes that the outcome of PAO for patients over 40 is “not as good as” the outcome of total hip replacements. While it doesn’t say the outcome with PAO is “bad,” for an insurance company this is denial fodder worth its weight in gold.

Thanks guys, please kick me while I’m down.

As of November 1st, my insurance company, along with most others, has unilaterally decided not to pay for PAOs. This probably means that they WILL pay for some, if you make a really great case on appeal, but that by and large they consider this rare operation, which has helped women for 30 years, to be “investigational.” Not enough large studies have been done. Hmmm, how many is “enough”? There are quite a few small studies that I’ve read, but how can anyone do a large study when this surgery is so rare? This isn’t like diabetes or heart disease – run of the mill maladies which every Tom, Dick and Harry seems to have nowadays. And oh, by the way, Tom, Dick and Harry probably don’t have hip dysplasia because the vast majority of people with this condition are WOMEN. We all know what whiners women are … with their subjective complaints and all. Those women, they want special, expensive surgery for all their silly little problems … we big insurers need to let them know that we know what’s best for them!

Believe me, if I could have a total hip replacement or resurfacing instead of a PAO I’d be overjoyed. Recovery time for THR is short, and one is only in the hospital for a couple of days. I’d be walking and full weight bearing the day after surgery, and probably skating again within months. Not that THR is a cakewalk, but compared to PAO it’s “hip surgery lite.”

The problem is that my dysplasia is on the severe side, and it’s coupled with severe anteversion. THRs are not designed for people built like me. They, and their cousin the hip resurfacing, are designed for people whose hips are fairly normal in mechanical construction, with perhaps small abnormalities, but which are diseased or worn out. While there is a “dysplasia cap” available for hip resurfacing, again, it is not designed for severe cases. Two experts have now told me that my best course of action is PAO, based on the severity of my mechanical imbalance and the fact that my hip joint is basically healthy. Why would I remove and replace a healthy joint! Why would anyone do that? It seems obvious to me that correcting the structural imbalance, preserving the joint, and avoiding multiple revision surgeries is my best course of action. I’m seeking a third opinion. How many expert opinions do I need to override Aetna’s blanket policy?

I will add that I am not your typical 45 year old. I like to think that I am in better physical shape than most. I am not overweight. I am very muscular. I have exercised all my life. What about the over 40 patients in the new study? How many of them were like me? Is the only thing we have in common that we are "middle aged"? Yes, I am over 40, but my life isn’t over yet. I’m not ready to take up knitting or lawn bowling. MY PERFECTLY HEALTHY HIP JOINT SPACES DO NOT NEED TO BE REPLACED … that is not my problem, oh stupid insurance company flunkie reading my file. What I need is better femoral coverage. Isn’t the solution obvious?

Giving Thanks

I haven’t written here in a while. I’ve been concentrating on living life, and trying not to think about surgeries and such. Things are mostly status quo, except walking is getting more difficult. I walked 6 city blocks to meet Perry at the optometrist last night – I thought driving would be stupid – and I’m regretting it today. It didn’t hurt much at the time, but I need to realize that the next day is always the killer.

My knee, elbow and tricep are also sore because of a fall Tim and I took on the ice yesterday. It was just a stupid fall during a free dance run-through, on our circular footwork of all things. I just went into a drape and fell for no reason, and took him down with me. I don’t think this fall was hip related, although I do notice that generally I’m not as steady on my blades any more and rely on Tim more for support. We got up and kept skating the rest of the session since we are so tough. I’m sure Dr. Mayo would not approve of any of this since I’m supposedly limited to “low impact” activities such as swimming, the elliptical machine, and sitting on "The Bean" watching TV. Ahem. Thank goodness Dr. Mayo's way too busy to read this blog.

The purpose of this post is not to complain as I usually do, but to give thanks. There are all kinds of reasons to do this. In frightening economic times, Perry and I both have jobs. We have health insurance (although it is doubtful mine will cover my PAO, but that is a story for a complaining post, not for a thankful post). Our parents are healthy. Overall, we are healthy, hips excluded of course. The kids are doing well in school and staying out of trouble. Other than our mortgage, which is at a low, fixed rate, we have no debt. Our home has lost a bit of value but we bought it at a good price before prices started to heat up; we plan to keep it for a while and we’re not under water. Our 401(k)s have taken a hit, but we aren’t planning to retire any time soon. We do feel very lucky that we are weathering these financial difficulties well, since we know that is not the case for everyone. Many of our friends have had setbacks and we can only be supportive.

I am thankful for all that I have, for my wonderful family and friends, and for Perry, who has cheered me up even when I don’t want to be cheered up. We are truly lucky.

New Product Review: AquaBells

I need to remind myself that hip dysplasia is not simply an excuse to buy new gadgets, although the upside to major surgery will be getting my very own "hip kit," sock-putter-onner, raised toilet seat, crutches and metamucil.

A pre-surgery gadget arrived today from Amazon: AquaBells, an exciting concept in hip fitness.

AquaBells are ankle weights which can be filled with varying amounts of water so that they weigh up to 4 pounds. I have started with about a pound of water and have gone through my hip exercise just fine. Once I am less of a wimp, I will be able to add weight slowly by adding more water. As long as they don't leak, I should be fine.

Since I travel, these will be handy to take with me since they only weigh a few ounces when empty. The one drawback is they are a little messy to fill from the faucet, but really not much -- it's a small price to pay for portable equipment which expands as I get stronger.

Lots of fun typos on the packaging ("Exercise quadriceps, hamstrings, inner thighs, and calf's ..."). Humor like this is always appreciated, especially during strenuous workouts. Overall I recommend these.

Fear

I haven’t really felt afraid yet, and that’s because my surgery is 7 or 8 months away (exact date still TBD). It seems so distant that I can’t be afraid of it yet. I’ve read many blog accounts of PAO surgery and I think I know what to expect. Some people would rather go into a surgery without knowing the details; for me, it’s better to know and get used to the idea of it than to be surprised. I’m such a control freak and I’ll be handing over total control of my body and all its functions to the anesthesiologist and surgeon for 5 to 7 hours, followed by weeks of dependence on others to take care of my most basic needs. But this is not my biggest fear.

I also fear doctors and needles. Even drawing blood from me is a major event. I have bad veins and a “simple” blood draw really hurts me. I have to get past this fear since there will be needles and tubes and drains and catheters and I don’t even know what other things attached to all parts of my body before and during surgery. But this is not my biggest fear.

I’m afraid of losing my abilities. Walking, skating, stretching, working in the garden. I stuck the skating in there casually as if it’s not too important, but who am I kidding. I have worked so hard on it the past many years that, to lose it all and never get it back would be a shame, a waste, something to cry about. Because of my hip issues, skating has been twice as hard for me as it would be for a “normal” person. Ice dancing is all about turnout. Those of you with turnout don’t know this … because you just think what you can do is the norm, and among skaters that is generally true. For those of us without it, everything is a struggle, even simple inside to inside Mohawks, about which I’ve said for years, “I can feel my hip grinding when I do this.” Doing the “simple” swing dance mohawk hurts like hell for me and it takes all my power of concentration to do that turn. That’s my version of “normal.” I stopped asking coaches about why it hurt and what I was doing wrong a long time ago and just did it, feeling and hearing the grinding at the same time as I forced my ankle to fake turning out my leg on the exit. A big smile usually hid the fact that my knee and hip were really turned in even though my toe was pointing out.

Tim and I are still skating and improving as a team. We’ve had a couple of great practices recently. I don’t even want to imagine him having to find another partner if I can’t get back to my current level of skating. I am terrified of that.

Back from the desert

I am back from judging the Pacific Coast Sectional Figure Skating Championships in sunny warm Scottsdale, Arizona. It was a good test of my pain levels, doing things that really should hurt. I sat for long periods of time in an uncomfortable seat at ice level which, obviously, means it was cold. I had to stand a few times to give critiques. I carried stuff. I slept in a hotel room bed that was not even remotely comfortable in any position.

Then at night Perry and I did some walking outside where it was warm. After all of that I would have expected a lot of pain, but I didn't really have much. I even went without the cane on the last day when we went walking around Tempe. I'm not sure why I felt so good but I suspect, sadly, that it's because I haven't skated in over a week due to a combination of a bad cold and being out of town. I guess I have to admit that skating is not good for me, even though it doesn't hurt much while I'm doing it ... the residual effect is what keeps me up at night in pain.

Well, being stubborn, I'm still not ready to let it go. I even have some goals for myself. I passed my Silver Samba in October, the first international dance for me. I'd like to pass the Cha Cha Congelado and perhaps the Rhumba before surgery next summer. The Rhumba is so much harder for me than for normal people. With legs that turn in, it's almost impossible to force those choctaws. I can do it but it's not pretty.

I'm starting to worry about all of the reports from post-PAO gals that their operated leg is still "gimpy" and their quadriceps (which are "moved" during surgery ... I don't know if that means "cut" or not, but I suspect so) are never the same after. I can't imagine skating on two gimpy legs when this is all over. It just won't work. I have huge quads and use them for almost everything I do on the ice, so it worries me to think they are going to be cut or moved or whatever and maybe never come back. On the other hand, the post-PAO ladies who seemed to be in better shape before their surgeries tend to do better and I'm hoping to be one of those. Plus I know what it means to work hard in the gym and not give up on my gimpy-ness.

Testing 3 international dances before I go under the knife will make me very happy. If I'm unable to skate at all post-surgery, I can always point to those tests and say that I used to be an ice dancer.

The Cane on the Plane

Ode to my walking stick, with thanks to Dr. Seuss

I like my cane
It’s very plain
It helps me walk
Avoiding pain.

My cane, my cane
Sometimes a pain
Rules out umbrellas
In the rain.

A lovely cane
It’s wood, nice grain
Tonight I’ll take it
On a plane.


I live in the Pacific Northwest. Granted, it doesn’t rain as much as we lead people to believe – some of that is hyberbole and meant to keep the rest of you from moving to our little slice of paradise. But for the past couple of weeks it has been pouring.

With the cane in my left hand and my backback on my back, I could in theory carry an umbrella. But usually I have a latte or a water bottle in my right hand, or something that doesn’t fit in the backpack which I’m carrying to a meeting across the street. Normally this is OK with me so I haven't been carrying an umbrella to work. However, last night I went to the salon, where they styled my normally curly/frizzy hair. If I keep it dry this style lasts a couple of days. Without an umbrella I’m doomed.

I pulled my jacket (no hood! Damn!) over my head and “ran for it” (meaning hobbled a bit faster) and made it with very little damage to my head. The return trip was equally difficult and the rain was coming down harder. Now I’m watching the frizz start to pop out everywhere on my head despite the seemingly hours-long blow dry session last night.

Luckily this won’t be a problem in Scottsdale where it’s warm and dry. We leave tonight and I’ll get to see how amenable TSA is to walking gear, which in theory could be used as a weapon. Stay tuned for a full report.

Sticker Shock

I got my insurance recap for the visit to Dr. Mayo’s office. A few hundred dollars for the consult, a few hundred for the x-rays, and a whopping $1,999 for the CT scan.

I guess I was expecting a large bill, but not quite that much. Since I’m paying out of pocket I am experiencing a wee bit of sticker shock. It’s a good thing we didn’t decide to renovate the kitchen this year! I needed a CT scan far more than that 36” range with double oven.

When Perry and I decided to do the high deductible health care plan last year, we thought it was perfect for us. We are healthy and pretty much never go to the doctor. Wellness was covered 100%, and that’s the only thing we ever utilized. Why pay high premiums when you don’t need to?

So last year we were happy with our decision to go on the high deductible plan. And this year too, until August, when I became the proud owner of an expensive medical condition. I’m just about to hit my $3,000 deductible, but not quite … unless something else unexpected comes along before the end of the calendar year, but let’s hope not.

I think it’s good that as a consumer I’m forced to know what health care “really costs.” That prevents me from doing stupid things, like going to the emergency room when I stub my toe or eating fast food every day. I already take responsibility for my body and my health but I know some people don’t, so I guess truth in billing is a good thing.

The CT scan was about 10 minutes (after more than an hour wait) of being put into a donut-shaped machine and holding really still. I know it’s expensive because the technicians are highly trained and have to calculate a whole bunch of variances based on what the CT scan spits out, and there were two of them, and the machine’s expensive, and it uses a lot of energy. I’m not disputing a couple of grand (and I’m happy to pay it since it proved I didn’t need to have a second surgery on each leg – the CT scan was much cheaper and easier to recover from).

But I suspect this is a harbinger of more shocking bills to come, so I am bracing myself. Since it’s open enrollment time, I’m also changing back to the more expensive health care plan offered by my employer. Even though I know Aetna is going to initially refuse to pay for my surgeries until I appeal and eventually threaten to sue them, I would like to know that at the end of the day my maximum out of pocket and deductibles will be lower. Guess it’s OK to start eating more fast food.

News from Dr. Mayo's Office

Well, some good news just in today ... the results of the CT scan indicate that I don't need femoral osteotomy, just PAO. Of course it's hilarious to say "just" PAO, as if that's a walk in the park. But 1 surgery per leg is much, much better than 2 surgeries per leg, even if they can be done at the same time.

Actually, we would have been talking 3.5 surgeries per leg if FO had been included ...the femoral osteotomy would have required a plate in my upper thigh which would have to be removed later, putting me back on crutches for a month. With the PAO, the screws might stay in or be removed, but in any case that is outpatient surgery and seems a little easier than a plate removal. With FO you are actually getting 2 surgeries (FO and plate removal) per leg. With PAO you are getting 1 surgery and a possible screw removal "procedure" which I'm calling half a surgery.

Dr. Mayo also clarified, per my question, that I have "moderate to severe" dysplasia with femoral anteversion. He probably said that during my consult but I couldn't remember, despite writing most of what he said down.

New Product Review: The Bean

Today I went to the sporting goods store with Perry, looking for ankle weights which can be filled with water (so I can travel with them ... I am judging 2 competitions out of town in the next 2 months and need to keep up on my exercises). They didn't have them so I'll have to order them on the Internet, but while there I found, and bought, something that may be useful to others with hip pain: THE BEAN.

It cost me $49.95 (less than it costs "on TV") and it looks like this:



It has been difficult to find a comfy chair to work at home or just to sit in the living room and read. My fit ball works kind of, but I get fatigued sitting on it for too long. Now, I am always skeptical of products you can buy via informercial, and I don't believe the claims that people using The Bean lost 40 pounds while sitting on it in front of the TV, but I do think it can be used as a stretching platform and a comfy chair for those of us suffering from hip (and perhaps back) pain.

I'm testing it as we speak. I have it propped vertically against the wall and I'm sort of sitting/reclining on it. It's cushy yet supportive, and seems to keep the pressure off my hips and back. If I lay it flat on the floor it might be nice to sleep on (?) -- which could be useful post-operatively. I can read on it or watch TV, and with it propped up I can type on my laptop. If I turn it over (round side up) I can sit at my desk as well.

I am now reading the online reviews which state that The Bean tends to deflate and come apart at the seams. I'll be on the lookout for that, but I'm not going to use it as a trampoline. I think for me it might be better to use as a comfy chair and not as a workout aid.

More than hip

I am more than just my hips.

I am 45 years old and I am female.

I'm an ice dancer. I've passed my standard gold dances and one international dance (Samba). My partner and I plan to compete in the gold dance event at the U.S. Adult National Figure Skating Championships in April of 2009.

I am a marketing manager for a financial services company. I have an MBA from the University of Chicago Graduate School of Business. My B.A. is from Colorado College.

I have been married twice, and I have 4 step children; two girls (23 and 20) and two boys (18 and 14). I have no children of my own. I am a cat person, but currently catless.

My husband Perry is wonderful and loving and supportive and tries hard to make me see that the glass is really half full sometimes.

I am a terrible cook and not so great at housework, although I hate clutter. We own a "mid-century modern" house (vintage 1966) which we are remodeling. I like contemporary, Asian-influenced design.

Until recently I liked hiking, biking, and horseback riding. I like being outdoors, although I get cold easily.

I love the beach, any beach, even in the rain. Growing up, we spent a lot of time at the Oregon coast and I still think that's one of the best places in the world.

I am a third-generation native Oregonian. I've traveled, although not as much as I would like, to Europe and Asia. I lived in Mexico for a semester in college and like to think I can still speak Spanish. Despite living in Colorado for many years I do get altitude sickness over 8,000 feet, yet Macchu Pichu is on my list of future destinations.

I care about the environment, and political issues. I vote. I try to keep up on current events. I volunteer my time for causes which are important to me.

I am more than just my hips.

Mystery Muscles

Last night I did some of the PT exercises I’d read about on another hip chick’s blog. I suppose I should go to physical therapy myself; my insurance allegedly covers it at 80% after I satisfy my $3,000 deductible. But I thought I’d try the hip strengthening exercises and just see what gives.

I am shocked, SHOCKED to find out just how weak some of my muscles are, despite skating. I knew which muscles were overdeveloped, but wasn’t aware until now how many were underdeveloped and underutilized, probably because of compensating for my pain.

Take my hip flexors, for example. Please, take them and give me new ones! I should have known something was up last year at the ice dance seminar with Paul and Sharon, where we were asked to stand on one leg and extend the other in front of us at hip level with skates on, and hold it … and hold it … and hold it. I could not do this! It hurt my hip so much that I could only hold it for about 3 seconds vs. the 45 seconds or so they wanted us to hold it. Isolating those muscles I was subconsciously compensating for was impossible.

At the time I was embarrassed and just thought, OMG, I am so out of shape. But I wasn’t really out of shape. I was skating 6 days a week, 2 hours per day. My skating was strong and my stamina was good, but I, an ICE DANCER, could not extend my free leg in front of me while standing at the boards holding on!! People who appeared far more out of shape then I was could do the exercise, adding to my misery. At the time, I had no idea why this was the case. I was really embarrassed though and figured I was just a wimp.

Last night when I tried to do the leg lifts with 2 pound weights, working those same hip flexors, I could barely do 5 of them. FIVE! The recommendation was for 15. I will have to work up to that, starting perhaps with 1 pound. My skates must weigh at least 5 pounds. Don’t even get me started on the clam shell exercises. I could barely do them either. I believe those work the hip abductors, yet another set of lazy muscles.

So, aren’t these the same muscles I should have been using to skate all these years? Of course they are. What the heck have I been using all this time? I know I can extend my leg forward (in hip speak, this is actually flexion).



See picture, this is my bad hip flexed in the Starlight Waltz last year. (Note that my toe is turned in, where it naturally goes, which is absolutely hideous and which I usually conceal better than this, but still I am able to flex.) What muscles was I using to do all this, my mystery muscles? Or perhaps it’s all being handled by my big huge glutes. That would not shock me. OMG, I am all messed up.

Raising Cane

I am not a very gracious disabled person.

Lately people have been opening doors for me, trying to pick things up for me when I drop them (especially the cane, which falls over all the time in meetings), and moving out of my way as if I’m ten feet wide and may topple over at any minute.

I keep saying thank you for these niceties but in reality I am not expecting people to do things for me and so it’s currently more annoying than helpful. I sound so ungrateful, but give me a break; I’m new at being disabled. And I don’t really feel very disabled most of the time. Yesterday I bent down to pick up the dropped cane and almost bumped heads with the stranger who rushed to get it for me.

I don’t think of letting people help me; it doesn’t cross my mind. In order to not be perceived as a total bitch (Watch out! Bitch With A Cane coming through!) I have to stand there with a smile on my face while people fumble to hold the door for me, even though they are carrying packages and coffee and I could have done it faster and more easily myself and held it for them as well. But why fight with them about it?

This morning at the coffee shop a rather large gentleman ahead of me held the door for me as I tried to enter. In doing this, he blocked the entry (he was very very large). So I couldn’t get by at all … so I said “excuse me” instead of the “thank you” he was obviously expecting. He turned red with what looked like anger and said “I am trying to be polite.” I said “yes, but you are standing in my way! I can get the door myself and it’s easier for me to maneuver if you move.” He walked away, mumbling to himself; clearly he thought I was BWAC.

So it seems to me, when you are perceived as disabled, even if you are independent, and in particular when you are very busy and impatient and always in a hurry as I am, you have to suffer the indignity of people helping you, which actually slows you down more often than not. I suppose the good spin on it would be “it forces me to slow down and enjoy life” or “it makes other people feel good to help me.” But hey, it wastes my time, and if that comment doesn’t sound ungrateful I don’t know what does. BWAC.

Speaking of the cane … let’s dish on that for a bit, shall we?

I have found that even if I am dressed in a business suit, if I carry a cane the homeless people on the street don’t panhandle me as often. The guy across from my building who used to be relentless in asking for my spare change now just says “good morning” as I walk by. Perhaps he figures I have it worse than he does. Of course I don’t, but for some reason he thinks so.

Some people give me strange looks, or even looks of disgust. This is usually on weekends when I am dressed in jeans or sweats running errands. If I look a bit disheveled and walk with a cane, I wonder if people think I’m homeless myself, or a drug abuser? Could that really be possible?

People at work are either full of questions or totally silent, trying to look at the cane without letting me know. Sometimes they avoid eye contact altogether. People I know sometimes appear not to recognize me. Do I really look so different now that I have a walking aid?

Where do I put the cane during meetings? It falls over all the time and of course I’m trying to put it somewhere that nobody will trip on it. I haven’t found a good solution to this. Plus, how can I reconcile the fact that I’m using a cane and wearing (small) heels? I have to dress up for work; am I really going to wear sensible shoes just because I need a cane? Eventually maybe, but right now I can and will wear shoes that I like.

Using a cane is harder work than I thought. I actually feel like I’m getting a bit of a workout sometimes, and I arrive at meetings flushed if I have to walk far to get there. Yes, and I’m late more often than not – I can no longer make it from one building to the other and up the stairs in 3 minutes flat. I’ll need to start adding more realistic travel time into my daily schedule.

While right now I am very focused on my hips, I hope to get all my research done, second opinions done and surgery finalized, so that I can focus on living my life as more than a pair of joints. This blog makes it seem like all I do is focus on me and my singular problem. Right now that is the case, since I’m in “fix the problem” mode. I haven’t blogged, for example, about the historic presidential election, although I have lots to say on the subject. It’s not that I’m shallow (although my acetabula are, LOL, that’s some really dumb hip humor), it’s just that I can only focus on one major project at a time, and this is it right now. I truly hope to resume the rest of my life very soon.

The Big Betrayal

I sometimes feel betrayed by my body. All these years I’ve taken pretty good care of it. I’ve been lucky to have had very good health all my life. I don’t smoke, rarely drink, don’t overdo the caffeine even though I live in Starbucks Land, eat right, and exercise. I am the type of person my insurance company loves – no claims, just the yearly wellness stuff, and meanwhile I subsidize everyone else’s bad health habits. Until now, when we find out that hey, I’m all broken! I have to be taken apart and put back together again in order to work right!

I did pilates a couple of years ago to become more flexible. My back was pretty flexible and my upper body can do interesting things, but no matter how much stretching or strengthening I did, my bones wouldn’t change their shape, and so my lower body was as inflexible as a piece of wood. It was so totally frustrating. My pilates teacher, Angela, is a skater and I had private lessons with her. I stretched at home every night. She was patient and tried everything with me. I eventually just gave up in frustration.

I’ve started using the cane more and more, and will soon get crutches. Not that I really need crutches yet (although the cane has been helpful). But I want to learn how to use assistive devices now, while I’m still pretty mobile, and not in the hospital the morning after surgery when I’m wandering around in a drug-induced fog with my butt cheeks hanging out of my gown. It also may help to keep some pressure off the joints before I go under the knife.

I wrote an e-mail to my co-workers explaining what was going on so they wouldn’t be appalled to see me with a cane at work on a regular basis. I showed up at the rink with the cane for the first time just so everyone could stare at me without feeling badly about it and get used to the idea.

People ask questions once they get over the shock. I know they all mean well, but after a while I just want to wear a t-shirt or carry a sign, or maybe just hand everyone an FAQ sheet:

~No, I didn’t fall down and hurt myself. Boy, do I wish that’s all it was!
~No, I’m not “injured” – my body was put together wrong.
~What happened? Well, actually, nothing “happened,” I was born this way.
~Thank you for saying you hope I get better soon, but I won’t get better, I’ll only get worse until surgery fixes me.

Carrying things while using a cane is difficult. I have a purse which is really a backpack and I dug it out and it works great! I think crutches will be really, really super-specially fun. Being on them may cure me of my daily latte habit since I see no way to carry a hot cup of espresso in the backpack while on crutches. My husband, who is very handy, will probably rig something up to make this possible. Although I suppose I don’t really need the crutches to cross the street and get coffee. After all, I can still walk on my own for now.

I wrote this in an e-mail today to Angela:
"It has been an enlightening journey to find out just how badly put together my body is, but it explains so many things about my inabilities and physical challenges throughout my life. It's good to know it's not just that I'm lazy, or that my muscles are tight, or that it's all in my head. It's a relief to have a reason now."

Research

The internet is full of interesting quotes. Of note today:

"Children with femoral anteversion often sit in the W position"

This is why I couldn't sit in that damned "indian style" position but instead was teased mercilessly and punished by teachers since I sat in the "W" position.

"First born females comprise 82% of all acetabular dysplasia cases."

Check.

"Those with dysplasia are often also swaybacked due to muscles which are not in balance due to the deformity."

Check. My costumer knows I am swaybacked, as does my ballet teacher who liked to whack my butt and tell me that my posture was terrible and that I "just needed to suck it in more." Right.

The following quote is from "Sarah" on the "Hipwomen" yahoo group. Sounds very much like someone else I know:

"Most doctors, most people, don't know much about dysplasia and so miss all the warning signs. I had slightly pigeon-toed feet (my right foot was worse) as
a child, and instead of getting me checked out I just learned to
walk with my feet straight so that I wouldn't get teased anymore. I
grew up figure skating and there were all kinds of moves I couldn't
do that all the other girls could, but I was just told I had "closed
hips" and people thought I was not being disciplined about
stretching (even though I was incredibly flexible everywhere else).
Now that I've had a PAO, I'm wondering if I'll be able to perform
those moves that I never could when I was younger?"

I cried when I read that this afternoon. I am trying to contact "Sarah," who had her PAO surgery in 2004. I want to hear that she is doing those spread eagles and choctaws that we closed hip people could never do ... although I'd be happy to know that she can still skate at all.

PAO - my insurance company's view

"Management of individuals blah blah blah with this malady blah blah blah includes: modification of activities to reduce excessive motion and burden on the hip, the use of non-steroidal anti-inflammatory drugs, and discontinuation of activities associated with the painful hip movement."

Their answer = stop skating and that will solve the problem. Therefore such surgery is "not necessary."

Of course, if I stop exercising I will gain 50 pounds (I like to eat) which will open the way to heart disease, high blood pressure, knee pain, and diabetes, and then the fuckers will get to pay for my treatment for those things.

The surgeon's PA is trying to negotiate with the insurance company through their contract agreement and should have an answer by June of 2009, which is why my surgery is penciled in for July of 2009. They asked me not to interfere unless that does not work and I will honor that. After that, I will be getting my attorney involved. Good thing I have one in the family.

Terri

PAO

I finally got in to see the specialist today, after a 3 month wait. He specializes in people with my deformity, acetabular dysplasia, and he does a lot of pelvic reconstruction from trauma. He is very well regarded.

He told me that I was a good candidate for periacetabular osteotomy (PAO), and that a hip replacement or resurfacing would not work well because my hip sockets are so shallow. An artificial hip would probably fail fairly soon since there would be poor structure to hold it in place.

They took more x-rays and also did a CT scan to determine whether my legs were the same length and how much my femurs were misshapen. At the end of the day (and, with 4 hours of drive time, we are talking ALL DAY), it turns out that I have multiple problems. Very severe dysplasia, meaning very shallow hip sockets. Not a mild case. This had not been evident from the first films. I have stage 1 arthritis in both hips which, once pain is present, usually quickly degrades to stages 2, 3, and 4. Also, my femurs turn inward ("anteversion"), which I knew, but mine do so in the extreme, meaning my femurs are actually twisted. So that entails another surgery, where they break the femur and insert a plate. The PAO means they cut my pelvis up and reposition it, inserting screws. Some day I'll have a fully metallic pelvis - TSA will love me.

The upside is decrease in pain (although I may still have some residual pain), a more stable hip and leg structure, a slowdown or stop to the arthritis, and potentially no need for future hip replacement. If I do need future hip replacement, my bone structure will be much more amenable, meaning less likely to fail, after PAO.

Downside is that I may have less range of motion, although the femur revision may give me some more turnout. Normal turnout is 30 degrees, and I have less than 5 degrees - "essentially zero" as the doctor put it. I do have excellent "turn in," which is ever so ugly in skating. All of this means it didn't matter how many plies I did, I would never ever ever ever ever ever ever be able to do an Ina Bauer. The rhumba choctaw? Impossible for someone built like me (yet I do it ... my way). All the coaches and ballet teachers who said I just wasn't trying hard enough ... well, you know the gesture. I'm too emotionally drained to get upset about it again.

Another downside is that I will be in the hospital for 5 - 7 days, non-weight bearing for 8 weeks post surgery, and unable to skate for 6 months, at which time they will do the other hip! So this is really 4 surgeries and 2 hospitalizations and a year off the ice in total. The thought of getting my strength, stamina, flexibility, balance and skill back in my late 40's after going through something like that boggles my mind right now. I know it's possible, but will I just give up and take up golf? It's entirely possible.

Finally, my insurance doesn't pay for this. The total cost PER SURGERY is roughly $150,000. That's right, them's a lot of zeroes. And then multiply that times two. And oh yeah, will the insurance company pay for the special hospital bed I need at my home for a month, and the physical therapy, when they don't even cover the surgery? I'm thinking not so much. The doctor's billing assistant said they are working to get this covered and if I wait until next summer (which I have to do anyway), they may have made progress.

I could have raided my 401(k) or my home equity at one point, but in this economy that's just not an option. How to pay for it is a big question, but I have time to ponder that as they can't even schedule me until next summer. I am tentatively penciled in for July, pending the funding issue.

A year off the ice is an awful reality to face. I'm not ready for that. I am still improving as a skater! I am still competing! I am still testing international dances! I am not ready to quit and not ready to have a forced hiatus which I'll need to fight back from.

Hip replacement has a much shorter down time and is paid for by my insurance. But, if I trust what I heard today, it won't be very successful for me. It sounds like my options are limited.

Meanwhile I will continue skating until the pain gets too hard to bear. Right now it is pretty constant, but sleeping is the worst. Skating isn't as painful as sitting. Maybe I will get some crutches so I can keep the weight off it all the time except for that hour or so when I'm on the ice. No cross training as I can't risk it. But I vow to get through this competitive season - I've made a commitment to Tim which I think I can keep -- and then take the next step.

The good, the bad ...

You know the rest.

I woke up this morning feeling really good. Sleeping is usually an issue. I can't sleep on my right side since my right hip just can't take the pressure. I can't sleep on my left side because my left knee generally hurts if I do so (I am sure my left knee problems are related to my hip problems, but that is another story). And if I sleep on my back, well, my back starts to hurt.

But I usually do sleep on my back anyways, with a few tosses and turns during the night, and get 6 hours of sleep. I have good and bad nights but never pain free, until last night when I slept the entire night and woke up with nothing hurting. It was a great feeling! I should have known that it wouldn't last.

I went to the rink and all was OK until we did our first lift, and I felt my left inner hip socket pop. We tried a couple more times but I could not support my weight with my left leg as I have to do in this lift. The left hip is my "good" hip, or "better" hip anyway. We continued skating for the two-hour session.

Now here I sit with ice on both hips and inner thighs. The pain has radiated from the inside of the left hip to the outside and all the way to the right hip. It's as bad as the first time this all started hurting, when I was off the ice for 3 weeks and went to the doctor the first time. It hasn't been this bad since then. Shoot, what have I done? That is an easy lift and hasn't given me any problem until now.

I am seeing a surgeon to discuss periacetabular osteotomy next week. Perhaps I've taken a turn for the worse, I don't know. Tim is gone on vacation for a whole week starting Friday and I was going to work on my Cha Cha Congelado while he was gone, but it sounds now like I will be "resting."

Damn, damn, damn. Shit, shit, shit. I was hoping to put off any surgery for a while (a year, maybe two?) because things were going so very well for so very long. Maybe this is just a minor setback and not the start of my downhill slide into arthritisland. I'll find out tomorrow if I can skate, or walk, or not.

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.

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.

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.

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.

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

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.