Showing posts with label Emotions. Show all posts
Showing posts with label Emotions. Show all posts

Tuesday, July 7, 2009

Buh-Bye

I am not sure why I am so attached to this old hip. I mean come on; it's no good. It was never any good! It's a piece of crap that was built wrong from day one. And yet I am sitting staring wistfully at my leg as if ... as if ... I should be mourning the impending loss of my dysplasticity.

I keep telling myself that the PAO is going to fix what's wrong with me, give me significantly improved function, and drop my pain level. After 46 years I should be ready to say good riddance to my miserable old uncovered hip without shedding a single tear.

True, I'll have a scar, blah blah blah, but that seems a small price to pay. I'll have to go through nasty surgery and recovery, yadda yadda yadda, but I've already come to terms with that. The future's all good, but I can't help but think I somehow need to formally say good-bye to the old hip. After all, this hip hiked all over Oregon, rode horses in Colorado and accompanied me on trips to Japan, England, France, Mexico and Canada. This hip and I got into all kinds of trouble in ballet class together. This hip was able to get me through my gold dances despite the fact that it was totally, absolutely, 100% unsuited for the job. This hip even jogged now and then under heavy protest.

It's not really going anywhere, it will just be re-fashioned into a new, improved structure. I should be celebrating this change and looking forward to all of the adventures my new non-dysplastic hip will share with me. I'm planning to hike Machu Picchu some day. I want to tango with Perry in Buenos Aires. I'm looking forward to walking the 3 mile loop on the scenic road just above where I live. And, I am hoping my new-and-improved hip might allow me to test the Cha Cha Congelado or even (gasp) the Rhumba some day. OK, stop laughing y'all -- by the time I fully recover, I'll be able to take them masters!

The pre-op appointments went well today, and I was able to convince them to save my one good vein for tomorrow's IV, so no blood letting occurred. The x-rays looked about the same as the first set last year, so my arthritis isn't any worse. Dr. Mayo was very honest in saying that I will still have hip pain post PAO, and that I may some day still need a hip replacement, but maybe not. I should get at least 10 years out of the reconstruction, maybe more. This surgery also won't give me any better turnout than I had before (and it may actually be worse), and that is disappointing. I'll still struggle with Mohawks and Choctaws on the ice, and I'll probably still get that grinding feeling every time I do them. But I WILL be able to walk more than a block without pain, and hike, and ride a bike, and walk the aisles of the grocery store like a normal person.

So it's time to say adios, adieu and buh-bye to old righty without regrets. Here's to new possibilities. See you all on the other side.

Thursday, July 2, 2009

I'm OK with "OK"

I hate countdowns, and yet there’s no other way to describe this last week. Every morning brings me one day closer to the inevitable. I’m lucky that the weather is beautiful and I am home from work this week, making it hard to wallow in self pity. I’m trying to get out of the house as much as I can since I may be stuck inside during the most beautiful part of the summer. Right now I’m at a coffee house blocks from where I live, just because I didn’t want to drink coffee and type this at home. Plus there are no chocolate croissants at home, and I just had to have one this morning.

So far I’ve been sleeping at night and I’m able to eat. When I’m anxious about something I have trouble with both of these functions. I’ve had intestinal issues but I’m not sure if those are caused by nerves or the abundance of iron I’ve been taking as prescribed. I haven’t had any memorable pre-surgery nightmares yet. In fact, I’ve been sleeping better and more than usual, which is strange. Perhaps my body is preparing itself.

People have been a bit too cheery around me at times, which I’ve found mildly annoying, but I realize that’s all par for the course. Everyone keeps telling me that I’ll “be OK.” Science can make almost anything OK nowadays. We’ve come to expect that modern medicine has a quick fix for everything. Feeling out of sorts? Pop an anti-depressant. Aches and pains? A bionic joint will fix you right up. Even previously fatal diseases such as cancer and HIV can now be treated with varying degrees of success. People are accustomed to seeing their ailing friends back in action quickly after medical interventions.

In the scheme of health care, I know that my malady and its correction are pretty minor things because hip dysplasia is life changing, but not life threatening. I will live through this. But it’s a longer recovery than most orthopedic procedures. It’s a rare enough condition that my spell checker doesn’t even recognize it. The surgery to correct it is so rare that my primary care provider, and many orthopedic surgeons, have never heard of it.

So most people don’t have any idea what this surgery entails. They envision me bouncing back quickly and feeling no pain; back to my old activities with no reminders of my problem. In reality, I know that the recovery period for this surgery is approximately two years, and I need two surgeries. Even if I do the second one as quickly as possible (six months after the first), my total recovery time will then be two and a half years. A time during which I will experience pain, frustration, and limitations on my activities. As soon as I’m somewhat recovered from the first PAO, I’ll undergo the second, and my crutches, walker and cane will reappear on the scene. My co-workers will again have to pick up the slack for me while I’m out of the office, and they may not be as happy to shoulder the burden a second time. Even after a full recovery, I’ll still be limited from certain activities for the rest of my life, and it’s likely I’ll still have some (manageable) hip pain. It doesn’t sound much like bouncing back, and it isn’t the wonderful recovery people are expecting. It’s hard for casual friends and acquaintances to be supportive for that long.

Upon reflection, I’ve realized that “you’ll be OK” is exactly what I might say to someone facing surgery too. It marries concern with optimism and, I suppose, depending on how you define “OK,” it is likely true. This surgery and the recovery afterward will contain awful parts and good parts and I’ll probably experience both discouragement and progress in a single day. In the end, however, I know it will all be OK.

Monday, June 29, 2009

A week and two days ...

My hip has been hurting. They have both been hurting, but my right has really been hurting. I cleaned the whole house, and did a lot of walking as Perry and I shopped for a recliner. The pain is good news since I am having surgery in 9 days. If I were feeling great, I might be reconsidering. I said several times over the weekend that I am now convinced beyond the shadow of a doubt that I need this surgery.

Ah yes, a recliner. When we first moved in together Perry got rid of his ugly but comfy recliner. I promised him he could have another one, if we could find one that looked good. That was five years ago and we never bought him one. Now I'm the one who needs it, although it will be his long term, so off we went in search of. We found one at our favorite furniture store, and it's made locally so it will be delivered before I'm home from the hospital, unless by some miracle I'm out in 3 days. Which, we all know, is not likely. So we'll now have comfy seating for me and something Perry will enjoy for a long time.

Tomorrow is my last day at work. I scheduled the week before surgery off to take care of last minute details, but many are taken care of. I do want to use the week to get mentally prepared and to make sure I don't get sick. Oh yeah, and to paint my bathroom.

I thought that would be a good mindless activity to distract me this next week, and it needs to get done since we pulled out cabinets in early May. It is a small bathroom so shouldn't take a long time, and while the task involves standing, I can also sit for part of it. Probably not the best idea I've ever had, but if I can accomplish something in the next week I will feel pretty darn good. It qualifies as upper body exercise ("crutch prep") too.

I may skate this week; I may not. Before I leave for the hospital, I will definitely take my skates to the skate tech to send back to Harlick for some renovations. New tongues, cut down a notch, slightly higher heel, and removal of some stiffness since these are dance boots and not freestyle (I know that I'll never jump again because that's the worst thing I can do to my reconstructed hips). I've wanted to renovate the boots for a long time and it's much more affordable than new boots. Now's the time since I won't be needing them in the foreseeable future. And it does mean that I plan to use them again some day.

Thanks to all who offered to donate blood on my behalf. You all rock! My Mom donated this morning; I was there and it took about 7 minutes for them to get a pint of blood (whereas I was in there for an eternity and they barely got a unit). She was fine; I was grateful; and now the blood part is over until I get it back post-surgery (if needed).

I never thought I'd say this, but I am looking forward to getting this surgery thing over with now.

Sunday, June 14, 2009

Paula Smart

My hip troubles are really just a minor incovenience in the scheme of things. Paula, a woman I never met but couldn't help but know of, recently passed away after a brief but incurable illness. This loss leaves the adult skating community in shock, as she was one of the true pioneers of adult skating and by all accounts a remarkable woman. My thoughts are with her family.
Terri

The Last

The Last topic I want to talk about here is my weight, but one of the purposes of this blog is to provide information to others on similar journeys. The point is to tell newly-diagnosed hip patients what to expect, and that it’s OK to feel like shit about things that are happening to you. Those are observations that I can contribute to the greater good.

Case in point, my weight. Since I can’t exercise like I used to, despite cutting back on calories, I have gained a whopping 10 pounds. On me, at 5’4” with a medium/small frame, this is a lot of lbs. My blood pressure and resting pulse have gone from those of an active, fit person to those of a couch potato in just 9 months. I am sure that my cholesterol levels and blood sugar have followed suit. I am just not healthy right now. For me, it feels like a personal failure.

I am also whiny because I feel bloated, don’t like how I look, and don’t like how my clothes fit (or, more to the point, don’t fit). I have gained weight in places that I have never had weight before, like my mid-section. Oh, I can’t stand it.

I tried dieting, but without exercise my body just thinks I’m starving it and lowers my metabolism to compensate. The scale doesn’t budge. This is what happens to athletes, I am told. I don’t think it’s healthy to diet, plus it isn't working, so I've decided to eat normally, albeit healthily, and plan to take the weight off when I can really exercise again, in a year or so. I am likely to gain some more in the coming months because my ass will be firmly parked on the couch. Woe to the unlucky visitor who stops by my house with cookies! Hint to everyone: BRING CARROTS if you want me to open the door.

I am still very strong, as evidenced by what I can do on the weight machine. I know there are muscles under there, hidden under those fat cells; muscles which are going to help me recover. I just can’t seem to get rid of the fat. 30 – 40 minutes on the elliptical at the level I can handle without pain (which is not very strenuous) just doesn’t compare to the 90 minutes of hard skating I used to do most days. I know that I could up the elliptical workout time but it is so mind-numbingly BORING that I just can’t bring myself to do more than I am already doing. Ditto the swimming. No can do.

That’s about as much I can stand to write about my weight issues. So, moving on …

I am right now in Virginia to judge The Last Competition B.S. (“Before Surgery”). As other hip chicks have noted, as you count down to surgery you tend to notice “The Lasts.” This is one such Last, but I know I’ll judge again on the other side.

Last week I spent quality time with my stepdaughter Ashley, visiting from college. I walked a lot, and even walked on the beach. I’m calling it “The Last” fun vacation B.S. although I know there will be many more vacations on the other side.

My stepson Aaron graduated from High School on Tuesday, preceded by a nice family dinner. I’m calling that “The Last” big family event B.S. There will be plenty more of those on the other side.

I introduced the person who will be taking my place on my biggest project at work to the project team this past week. I’m calling it “The Last” political issue I have to deal with at work B.S. For sure, there will be a whole lotta those on the other side!

As for The Last Skate … well, that happened about a month ago. I still have my skates in the car, and every single day I ponder going over for One Last Skate. A part of me really wants to, but I can’t quite do it. I always find some excuse.

The Last time I went was a pretty good hip day with very little pain. I was able to do some of the things I used to do (the Austrian Waltz twizzles, the Rhumba Choctaw and a hydroblade, for my skating friends), and I really enjoyed expressing the music on my Ipod that day. The sun was shining through the windows in the rink. I felt good. I felt happy. Somebody asked me if I skated in an ice show and it made my day.

Since then my hips have degenerated noticeably. I don’t know if I’ll skate again at my prior level on the other side. I know I can’t possibly do so now. So I really don’t want to mess with my happy memory of The Last Skate by going to the rink right now.

I do miss all you guys though.

Monday, February 16, 2009

For once, I have nothing to say ...



Saying nothing

I could whine some more about how everything hurts, or talk about the nagging "fear of surgery" that I'm beginning to experience and the associated fight or flight response (I can cancel this damn surgery any time I want to, yeah!). I could talk about my decision to stop skating and my new hobby, sitting. I suppose I could talk about the daffodils coming up in the yard, or the weeds which I know I won't be able to deal with this year. I could shock everyone by talking politics on this President's Day, but I don't have the energy. So, I'll wish you all a happy Monday and leave it at that.

Sunday, February 1, 2009

Right this minute,

there are 25 teenage boys in my basement watching the super bowl. That's right, I said twenty-five. My stepson Aaron invited his entire youth group over to watch the game and Perry and I are playing the role of pizza server, soda pourer, and "chaperone." So far, so good, although we and the cat are already deafened by the yelling and cheering going on one floor below.

The testosterone is pretty thick in here.

Earlier today I went to the rink for the first time in 2 weeks. For the first time since my diagnosis, I noticed how my abilities had deteriorated. It was no longer just a question of skating through pain but still able to do most of what I could do before. I was unable to put my full weight on one side of my body and support it on one leg for any length of time. I was shaky and wobbly and couldn't bend my knees. I could not hold an edge. The pain was no longer something I could just ignore; it controlled what I could and could not do.

After the first lap around the rink I was ready to stop, but I forced myself to stay out there and "work through it." By the second hour I was seeing slight improvement, but that's really not saying much. I couldn't even do the preliminary dances. I "got through" a few dances during the second session but they were not on edges and had no speed. They were walked, well, stumbled. They were not danced. I couldn't get my body to do what I wanted it to, try as I might.

I know I shouldn't have an ego about this, but I skate in a mall rink and there's an audience there. I was on a high level dance session where everyone is a good skater, and then there was me ... stumbling around the ice as if I had never skated before. It was humbling. I felt out of place. I am sure the shoppers weren't pointing and saying, "what is that old lady doing out there with all those good skaters" ... but it sure felt like it.

Am I that much of a narcissist? I guess I can relax about it. I'm sure nobody was looking at me, they were watching the dancers who could skate.

Thursday, January 15, 2009

It's the standing, stupid

While working out last night, I was reminded of my lifelong disgust with myself for never being able to “get fit.” No matter how much I worked out, it seemed my leg muscles would never get used to exercise and my legs always tired quickly and started to ache.

When I lived in Colorado, in my 30’s, I walked 3 to 5 miles every day in my hilly neighborhood. Since I lived on a mountain this was also a way to see wildlife and enjoy the outdoors. I was already athletic so walking seemed easy in some ways – I didn’t get out of breath – but my legs hurt while I was walking and after. So I figured I needed to just keep walking and over time my muscles would build up to the task and the pain would stop.

I walked for 4 years, after buying the latest in cushioned walking shoes, and I walked on dirt trails which I realize now were softer and better for my hips than concrete, but my “muscles” never stopped hurting. The same thing happened if I went to an aerobics class, or did any kind of high impact cardio training. I cursed myself for being such a weenie and just did it anyway. I trained harder, hoping that would do it. I always wondered why everyone else was in better shape (meaning able to walk just fine) without even trying.

When I started skating again I had the same achy leg issues, but put them firmly in the back of my mind. It always bothered me that despite all of that exercise it never got better and I was still “out of shape.” When I tested or competed I had to be very careful not to warm up much so that my legs wouldn’t be “dead” by the time I performed. It was hard for me to reconcile that I just didn’t have any stamina in my legs, although my lungs were fine. I learned how to conserve my energy for when it was needed.

Last night I was doing some standing leg exercises. The leg doing the weight lifting was fine. But the leg I was standing on, putting all my weight on in fact, instantly had that same “muscle” pain and tiredness I used to get. I realize now based on the location of the pain that it wasn’t my muscles that were aching at all. It was my femur bone slamming into my acetabulum that was causing the pain, because my acetabulum doesn’t cover the femur properly. So, all my life, all of my weight has been borne by a very small part of the bone. No amount of training was going to make that pain go away. I just trained myself to ignore it.

I am glad the mystery is solved. It will be nice to some day be able to stand on my leg and have the weight of my body correctly distributed over a larger surface area so I won’t have that aching tired sensation. When both surgeries/recoveries are over I’ll be almost 50 years old, and if all goes well I may just be able to stand and walk normally for the first time in my life.

Wednesday, January 7, 2009

Motivation

I skated by myself today because Tim is sick. I have found the perfect piece of music to use for solo interpretive. It is sad, yet hopeful, reflecting my mood of late.

I have been toying with this music for some time now, doing a bit of choreography each time I skate by myself. I'm to the point where I feel it would really convey the emotions I'm feeling, and I'm tempted to enter the interpretive event at Nationals in April. But I know that it's going to take every bit of my mental and physical energy and focus to compete in the gold dance event with Tim, and that's my first priority.

I've gone back and forth in my mind - "compete in interpretive" ... "don't compete in interpretive" - and with the deadline for entries being next week, it's forced a decision. As much as I want to do it, I am not going to enter the event. I think I'll save this music and this choreography to do after I've had both of my surgeries and recovered.

I realize that for various reasons, it may never happen. But it does give me something to plan for and perhaps will provide some post-surgerical motivation when I'm hating my physical therapist and rebelling against another lap in the pool.

We'll all have to be patient, but if all goes as planned I'll debut the progam in April of 2011. Please mark your calendars.

Pity the runners

I pity anyone who has hip dysplasia and runs. I am not a runner myself - I never liked to run, and never was any good at it, and now with chronic hip issues I will probably never run another step in my life. But I know that runners are just as committed to running as skaters are to skating. It becomes more than a form of exercise, but a way of life. Similar to skaters, runners also socialize with other runners and find it to be great stress relief and escape from the daily grind. So it would be very painful emotionally to give up running.

Skating can be high impact if one does freestyle. The constant jump landings put pressure on the hip joint as well as the knees, ankles and back. I skated freestyle as a kid (heaven knows how I was able to do so with these wonky hips), but now I ice dance. While ice dancing is athletically rigorous in ways that aren't apparent to the casual observer, it has a much lower impact on the hips than freestyle skating or running. So, while I have been told ice dancing is a no-no for me, I justify it as part of my existence because I consider it "low impact" and it hurts me less than walking.

If I were a runner I would not have that option. Recently several posters on the Hipwomen Yahoo Group have talked about how difficult it is to give up running. I can absolutely relate. I am afraid that for those gals, giving up running will be permanent, even after successful surgery. It's just too risky to put an already compromised hip back into a high impact environment. I know that some of them do run again post PAO, but it's rare.

I am prepared to retire from ice dancing post PAO if I'm unable to get my strength, balance, and/or range of motion back. Some or all of these outcomes are possible. I am hopeful that with enough hard work in the gym and a good physical therapist I'll be able to get back on the ice post PAO. I have given it a lot of thought ... what will I do to replace skating if that occurs? What other activity that I could possibly do post PAO combines movement and music and speed and grace and working with a partner? Or even a subset of the above? I don't have an answer yet.

My heart goes out to the poor runners, who almost certainly must find something else to replace their activity of choice. There is nothing I can say, other than that I feel their pain, with every step I take.

Sunday, December 7, 2008

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.

Wednesday, December 3, 2008

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.

Monday, November 3, 2008

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."

Saturday, November 1, 2008

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.

Thursday, October 30, 2008

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.

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.

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.