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.