Monday, November 10, 2008

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.

Sunday, November 9, 2008

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.

Friday, November 7, 2008

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.

Thursday, November 6, 2008

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.

Wednesday, November 5, 2008

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.

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.