Dre-e-e-e-eam

Dream, dream dream... man, I love that song. Definitely the best use of "gee whiz" in modern song. Or... I guess any song. My crazy involved dreams (which I've credited to my cleared spinal column, though perhaps I'm just having some sort of renaissance of the subconscious) continue unabated - biological/zombie terror outbreak the other night and an extremely long and detailed Harry Potter dream over the weekend, which I'll blame on Van Deren for showing me all the HP movies in the span of a week and a half. I've also had Dream Police stuck in my head for days, which I suppose I can only blame on Cheap Trick.

And I seem to have popped my left shoulderblade back mostly into place, which is great and strange. And today is the last day of school before break, though of course I've gotten some good stress to carry me through to the new year (including a School Board presentation the day we get back, half-hearted-huzzah), but, you know, this morning I saw the most amazing sundog (parhelion!) on my way to school and TOMORROW IS MY BIRTHDAY!!! OH HAPPY DAY! :D

2/3 of the way to TOTAL CHRISTMAS CHEER!

Last night I finally saw the Christmas cement truck, and today heard Fairytale of New York! Now I just have to watch Beavis and Butthead Do Christmas with the boys, and my cheer will be complete!

My pelvic sway

Sounds pretty sexy, eh?! But, um... it's not, really. Curses!

I had my reevaluation with the Rushfords Monday, and have moved consistently out of the red zone, exceeding our target goals in 2 out of 3 categories. Fantastico! I'm steadily working through stored stress and doing a good job of getting rid of new stress as it comes up, which is an especially amazing feat this time of year. The more I work out some areas, the more aware I am of the places that are still stuck, among them my left shoulder blade, which I feel like I finally breathed into for the first time yesterday at my adjustment. Turns out my pelvic sway is still much the same as when I came in, which surely has some to do with the fact that, you know, my pelvis is... what's the least repellant word here? Malformed? haha Hot!

Though I don't hold out much hope that NSA will somehow magically make all my hip pains go away, it's certainly had an amazing impact, yesterday being a fine example - I came limping in all grumbly mumbly and Dr. Hoo did some leg maneuvering along with the usual spine and shoulder stuff. Definitely the first time a medical professional has ever rubbed my butt and said "Let's bring some breath here, please." But, hey, it works! So I brought my breath there (which I didn't even really know I could do) and it was great. On my last deep breath of the adjustment my eyes actually rolled back in my head, and immediately Dr. Hoo said "Did you feel that breath?!" And I did, all the way up into new and exciting realms of spinality. And it was pretty sweet. :)

Slip slidin' away

When I left Hinesburg last night my car thermometer read 42 and by the time I hit Montpelier it was 31 and the sidewalks were an uninterrupted sheet of glare ice. I slid cautiously the entire .2 miles home from my parking spot, feeling kind of silly until I compared it to how silly I'd feel if I fell and had to go back to crutches - it's all relative!

Two weeks from today I turn 29 (I may have mentioned this approximately 3 zillion times already) and 6 months from today I go under the knife - duhn duhn DAAAHHH! Thankfully the extreme delay before surgery hasn't resulted in my obsessing over it nonstop, and has instead helped me get everything in order in my usual compulsive manner. Also I've had plenty of time to get jacked in anticipation of all my crutch time. *flexes* :)

And I'm doing pretty well! I get a little anxious reading on hipwomen the tales of folks just going through a PAO, but have gotten pretty good at recognizing that there's no way I can anticipate how my particular experience will go, and there's no use fretting over it. It seems like attitude makes an enormous difference in healing, and I'm determined to get better, so I've got that going for me! And I feel like I have an amazing support system, both personally and medically - I can't thank what I think of as "my team" enough for helping me get through the past 8 months. You make my life better!

Thanks BJ :)

BJ has consistently been the funniest contributor to my library of hip-related humor. Sent me this the other day:



heh heh heh

I nearly - NEARLY! - went back on the cane yesterday, after spending too much time on my feet at the store Saturday (and sleeping 12 hours that night) but managed to muddle through. This near-zero weather isn't doing me any favors, though I believe Santy Claus will be bringing me a new cozy knee-length coat for Birthmas this year!

On the insurance front, suffice to say I am very irritated right now and things are still up in the air about my MRI bill. Hmph!

Last Thursday I went to a demo/"Life Talk" at the Rushfords and now I have spine envy. Dr. Hoo let us observe an adjustment on a woman who's been coming to them for years and it was pretty mindblowing to see how quickly her spine is able to modify ITSELF in response to the smallest targeted touch (sometimes nowhere near where the problem might be manifesting). It was great to finally be able to see the process from the outside perspective and understand what an active role I (slash my bodymind) can and should play in the adjustment. I'm taking charge of my spine dammit! haha Looking forward to tomorrow's adjustment, which I think is my second to last before I get reevaluated and, much as I love it, hopefully drop down to going just once/week - I don't think the stress of driving there all the time is helping me any!

And in other news, MY BIRTHDAY IS TWO WEEKS FROM WEDNESDAY!!! WOOHOO! :D

Man, insurance is dumb.

So even Blue Cross doesn't know why I got billed $450 from Children's Hospital - the friendly customer service lady was like "Uhhh... I'm going to pass this on to our investigators...?" But it seems like it was just an error in processing, since I had approval for out-of-network service from Dr. Kim and an emergency approval (from the side of 89) for the MRI on the day of. Apparently the charge is for the reading of the MRI, which may well have been done by someone other than Dr. Kim, which may have resulted in the error. Now I wait. And just presume it's all a mistake, because I sure don't have $450 lying around!

Otherwise, though, insurance is most assuredly NOT dumb, as without it I would have paid probably $15,000 (yes, that's the right number of zeros!) out of pocket before even getting to surgery. Or, more to the point, have incurred $15,000+ of debt!

Waking up this morning I was reminded of an unforseen consequence of my continued NSA adjustments - lots of sleep and LOTS of long, bizarre, superinvolved dreams! I don't know quite why, though the sleep isn't really a surprise. For whatever reason, that's what happens when my legs tire out - I just nod off... for about 3 hours on average! The dreaming I'm sure the Rushfords would say is a result of the pathways along my spinal cord being unblocked (and whatnot), but whatever it is it's throwing my subconscious for quite the loop!

Level 2 ACHIEVED!

Well, Thanksgiving was awesome, Celtics were AMAZING, and having Travis and BJ (and Nick and Kara) in town Saturday was just a joy. Overall, life has been pretty good, though I was limping something fierce by the time I got to the Rushfords last night. I can always tell how well I'm feeling by how long the hallway seems. :)

Being trapped in a car for as long as I was last week, I actually found I had plenty of time to focus on my spine, and all the important nerve messages it sends me to keep my alignment true. Dr. Hoo was pleasantly surprised to see how well I was able to maintain flexibility despite the added stress, and started working with me on some Level 2 spinal business. This involved me laying on my side while she lined my ailing vertebrae up all proper-like and had me hold it for a few breaths. Immediately upon sitting back up, my left hip pain was gone. Just... gone! Astounding!

I also experienced another one of these crazy deep healing breaths that went right up into the top of my spine and shoulder blades, realigning the whole mess back to center. It's the kind of breath I expect to see in tomorrow's "Life Talk" at the Rushfords - basically a demonstration for new patients of what's going on behind your back when you're laying there (a lot more butt-touching than you might think). I'm definitely looking forward to it - much as I've felt the effects of my adjustments pretty profoundly, I still have no idea how to explain it all to people. Lucky for me I have Ali around to say things like "Oh, I looove Level 2!" which makes me feel slightly less crazy. :D

You take the good, you take the bad, you take them both and there you have...

...the facts of bilateral hip dysplasia?

Yesterday in the mail I got:
a) my temporary handicapped parking permit - YAY!
b) a $450 bill from Boston Children's Hospital - BOO!

But today is my last day of school before Thanksgiving break and, aside from the fact that I have to get up Monday and Tuesday mornings at 7 to move my car, it should be a nice relaxing time. And Wednesday night, a nice relaxing time COURTSIDE WITH THE CELTICS!!! (Special thanks to Jon "Fantastic Friend" Kemp!) Though sadly we will not be close enough for KG to fall on me should he go for an out-of-bounds ball, or so Jon claims. I still believe ANYTHING IS POSSIBLE!!! :)

I'm getting the fear...

...though thus far I've been able to stave off the bulk of the loathing!

My right hip hurts. There, I said it. The front of my left hip is panging and the side of my right hip is sore, sore, sore. I don't know if you've ever tried to limp BOTH legs, but it ain't easy. The pool yesterday was phenomenal as always (though somehow the water was colder than it's ever been), and I didn't feel any strange strains, so maybe it's just the cold that's doing it. I hope. Except that if it's the cold, I've got at least 5 more months of this. :/

Without getting too far ahead of myself, I'm considering what the next year+ of my life will look like if (when?) I need a PAO on my right side. There are plenty of women who've had both, and I've seen them scheduled as close as 6 months apart from one another, which would put me, in a best case scenario, right around winter break (slash my 30th birthday - yipes!) next year as a possibility. Initially I had said I would do summer of 2010 RPAO but at this point I can't even fathom going through another year and a half of pain and waiting. Of course, an RPAO also means I won't be able to drive even an automatic for maybe 2 months, which would complicate matters considerably. I'm going to give the whole thing a big HARRUMPH!

Today in my as yet futile quest for winter parking, I uttered for the first time the words "I'm handicapped" and felt pretty damn weird. It's not at all accurate... but then it is? Depending on the day? I think the word I've used here before is "limited", but "limited" doesn't get you a snow-free parking spot in downtown Montpelier, now does it?! :) *grumble*grumble*grumble*

Oh, except I can't complain too much...

...because tomorrow I'm seeing THE AVETT BROTHERS!!!



And I will surely weep for joy. :D

I should be thanking my legs

For hurting me, that is - according to Dr. Hoo. It certainly is an unfailing warning system for when I'm pushing myself too hard. It's actually pretty remarkable how quickly it gives me "constructive feedback" (in the form of various pinchings, pangings and wobbles) when I start thinking I can go rushing about all willy-nilly. How soon I forget my crutching and caning pace! But I'm working on it, for sure. Because I have to.

Monday the pool was inexplicably closed for Veterans Day? And yesterday I couldn't make it because of meetings. By the time I got to the Rushfords at 6, I was almost wishing I had the cane with me. Almost. :)

Though I am loathe to even put words to it, I have to admit (to myself, mostly) that my right leg has been bothering me. More than once last week when I was taking off my pants (which I should probably be doing sitting down, but don't always) I had a weird poppy pinch right in the front of my right hip joint. Scared the crap out of me. Dr. Kim claims that if it hasn't starting bothering me yet it won't, even when bearing the brunt of my weight for 3 months after surgery in June, but that seems physically impossible. We shall see...

I'm also in the midst of the Great Winter Parking Finagle with the City of Montpelier. Because I don't have parking at my place, and can't park on the street overnight from tomorrow through March because of our RIDICULOUS automatic winter parking ban, I normally park in a lot behind City Hall. That means, however, parking on the street when I get home from school (to avoid paying at a meter), then going out again in the evening to move my car to the lot and trudging out in the morning to move it again and/or head to school. While it's not a particularly long walk, it's a walk I'd prefer to avoid once the sidewalks transform into a snowy icy deathtrap. Thankfully, because I live in sweet little Montpelier, the Mayor herself has given me a load of leads to try to track down a parking alternative. I'm hoping for the one that puts me on the lower level of the parking garage - can you imagine the joy of not having to dig your car out after a snowstorm?! I sure can't! Otherwise, I'll be investing pretty quickly in hiking poles and some cleats!

T-minus 7 months (and counting)

Yes indeedy, 7 months from this moment I will likely still be unconcious on an operating table at Beth Israel. Oh, how time flies when one is anxiously counting down to highly-invasive surgery! haha That said, I am feeling (to quote Larry David) prettttty... prettttttty... pretty good! I've been off the cane for over a week now, have reduced my ibuprofen intake by half (to a paltry 1200mg/day!) and worked my Saturday shift at the store like a normal employee. My legs were definitely tired by the end of the day, but I didn't have the shooting hip pain I've grown accustomed to - it really just was muscle fatigue, which is actually quite pleasant when you've been mostly unable to use your muscles for some time.

I feel so good I keep having to remind myself to slow down, but thankfully my body reminds me pretty quickly regardless. But I don't stop and hesitate at stairs or curbs like I've been doing for months now - I just focus on the muscles I know DO work to get me up (down's not really a problem). The proof is really in the pudding in the pool (nice image there), where I keep having moments of "Whoa! That doesn't hurt!", mostly about my lower back while I'm doing balance and midsection-strengthening things. Getting my lower back sorted has been an incredible boost in my endurance doing those exercises, such that I've increased reps steadily over the past couple weeks. Being strong is pretty cool! And I finally understand the phenomenon of exercise junkies... not that I suspect I'll be turning into one of them for real anytime soon.

Sadly for me (and much of Vermont), I'm more of a cheese junkie, something I need to work on in my new low-cholesterol lifestyle. Can I get a sarcastic WOOHOO?! :) Janice, my trusty nutritionist, and I had a nice long visit last week where she outlined my best plan of attack for diminishing my nasty LDL levels and praised my progress thus far. It was nice to get that unabashed reinforcement (unlike the reinforcement I give myself, which has all sorts of caveats - why do we do that to ourselves?!) and I don't feel like lowering my cholesterol will have too negative an impact on my diet. Aside from my beloved cheese. :(

I also sent in my form today for Dr. Crose to recommend me for a temporary handicapped parking permit. With snow (and Montpelier's absurd automatic winter night parking ban) fast approaching, I need all the parking help I can get. Otherwise, though, I'm chugging right along, drizzle and drear aside. This afternoon, to the pool!

Who wants to see my insides?!

I asked for copies of my x-rays to bring to the Rushfords. Pretty cool, eh?! You'll notice almost no difference between my right (1st two) and left (2nd), even though my left has been killing me for over a year and right's been largely asymptomatic. This is also probably the only time many of you will see my butt. :)

Dibbies!

Practical AND stylish! hahahaha

Barry Franklin: "I feel like I've died and gone to America."

That about sums it up, yes? :D

In light of the New Day Dawning in America (And Whatnot) I'll keep this brief, though I felt an update was in order after I saw Tucker last night and he said "I'm glad you're okay - you hadn't blogged in a few days and I was worried." hahaha I am, in fact, quite a bit better than okay, following an excellent visit with Dr. Julietta (pronounced not with a J but with a "hoo") Rushford on Tuesday. I gave her the quick-and-dirty on my condition (it's always odd to explain it to someone who actually knows what I'm talking about!) and she said "But Marissa, the last time you were here you were wearing a cane, were you not?" :) Saturday was the last day I used my cane, nearly 5 weeks after I started on crutches - that's just about right in the 4-6 week range they'd given me when I started, but I can't discount the role NSA has played in my dramatically improved comfort level.

When I told Dr. Hoo about my surgery, she made the same face everybody makes when I tell them about it and said "Well. I want you to open yourself up to new possibilities. The body has an amazing capacity to heal itself - that's your mantra from now on!" To be honest I'm not quite to the mantra level of relaxation at ol' Rushford - more on the "Whoa! Who's touching my butt?!" level, with periods of patchy meditative focus. But there was a moment when she touched my lower back and I suddenly BREATHED in this huge deep breath, and felt like my whole face opened up. She said "Did you feel that breath, Marissa?! Breath is what the body uses to heal itself - it's something else for you to keep in mind." And I DID feel that breath! It was pretty crazy.

Yesterday I spent a goodly amount of time stretching and exploring my shockingly expanded range of motion - and this after only 3 adjustments! Tucker is convinced it's hypnosis, but if you consider that muscle tension is a matter of your brain being stuck sending the same signal over and over again, it really is a matter of redirecting the brain, or refocusing it long enough for the signal to reset, a form of hypnosis, I guess. Uhm... this is my entirely lay interpretation of what happens to me at the Voodoo Doctor. :) But it works, and that's good enough for me!

I'm walkin', yes indeed!

Leaving Caney City

Maybe I'll head on up ta Gun Barrel City! Man, you really don't want to mess with Texas! :)

Friday I decided to forego the cane for my Halloween extravaganza - it was a last-minute decision, but one I don't regret much a'tall. I wandered downtown Rutland for some time, and even DANCED (which was heavenly) and didn't really feel too horrible at all. Until the next morning! Saturday I spent mostly leaning heavily on the cane and lying on my parents' bed with a cat and an ice pack. Yesterday, though, I fore...went? the cane again and cleaned my disastrous apartment for several hours without any real trouble. HUZZAH!

A big part of the Rushfords' clinical... model, I guess, is that improved spinal function improves the body's ability to heal itself. A couple weeks ago if I overdid it on my hip it'd take DAYS (or weeks on crutches) for me to restabilize, but after resting up for most of the day Saturday I was pretty much good! It feels AWESOME to be on 2 legs again - I can't even tell you. And being in the pool Thursday just reinforced the wondrous benefits of my NSA experience - I keep having moments where I'm like "WHOA! I didn't know I could do that!" Like... putting my right hand completely over my head, for instance. Mmmmm life is good!

What is Network Spinal Analysis?

C'est ca. Does that help? Probably not. :)

Following rave reviews from the future Mrs. Tothers (and a free referral from Mr.), I travelled yesterday to Rushford Family Chiropractic in Burlington. Let me tell you it's a little odd to walk past Army and Navy recruitment offices only to open the door to an aromatherapitized, serene-chant-filled center for connecting me with the life force that flows through me. Somehow this made me more nervous than any of my MANY other medical experiences (except the MRI!), but as soon as we got down to the task at hand I could see the benefit of it all.

After writing my name and medical history for approximately the 1 zillionth time, Dr. Matt and I discussed the stresses in my life, both physical and emotional, before he started the evaluation of my spinal function. He started at the top and had gotten about 3 seconds in before discovering two huge bands of stress along the righthand side of my neck and shoulder. He likened these to tree trunks of stored stress, dating the lower band from about 1996 and the upper from about 2002 - "I believe that's the ex-boyfriend band", I told him. :) 1996 was when I was 16, so between my dealings with my parents (and my own brain) and the losses we experienced that year, it makes sense I'd have some tension from then.

The other major area of concern was, not surprisingly, my lower back. Holding my shoulders in place and pushing on the area, he put my range of motion at about 10% of capacity. To be honest, I didn't even remember that part of my spine COULD move, which is kind of scary.

I would be hard-pressed to explain what the actual "adjustment" consisted of, not because it's complicated, but because it's so simple and effective it's mindblowing. You can pretty much throw the chiropractic crack-and-snap paradigm out the window - there's barely any touching involved at all! But somehow it resets the signal your brain's been stuck sending to a particular muscle and allows it to relax, sometimes for the first time in years! It took less than 15 minutes, and immediately when I sat up the right side of my neck and shoulder felt... well, FELT for the first time in I don't know how long. I had a really weird time driving home, because I felt like my head was on crooked! And, suddenly, when Dr. Matt held my shoulders in place and pressed on my lower back, my whole body moved! He estimated it at closer to 25% range of motion. Did I mention my mind was blown?!

The Rushfords have a handy Spinal Exam Results Chart that rates your Range of Motion, Tissue Stress, and Spinal Cord Tension from a soothing blue Wellness/Maintenance Care range to a fiery Critical Care Range. I redlined across the board. Dr. Matt's recommendation was that I make 3 visits/week and reevaluate at 12 visits. Since their office is a ways away and they're only open evenings twice/week, I booked twice weekly for the next few weeks. I don't know how I'm actually going to PAY for it, but it's definitely worth it. Not to be too melodramatic, but when I went to get some food after my appointment, I left my cane in the car - the first time I've walked out in the wide world without some manner of stick in over a month! :O

Tonight I go for my second session and, who knows, may be doing cartwheels come Friday morning! :)

Also...

I'm glad I wasn't on the train today!

Didja miss me?! DIDJA?!

Augustus sure did. :)

Well, DC was a phenomenal success - I walked at least 2 miles on Friday and didn't have much pain at all (until Saturday!) aside from cane hand pain. Riding the Metro back I sat there watching my right hand vibrating - I surely did some nerve damage, as my pinky still isn't working quite right. Small sacrifice, I suppose, for not having to wield crutches all day. I'm pretty sure that would have been impossible. As it was the biggest challenge was the Metro, more because of the crowds than anything - escalators a-plenty and elevators to boot! But people were by and large very kind to me, and helpful to no end, though perhaps to a fault when trying to get me through the revolving door at the Hirschorn. :D

I definitely felt for Christopher, who even at my normal pace habitually walks 5-7 paces ahead of me - I kept saying "I can't hear you, you're too far away!" Which, at his normal volume, is saying something! ;) He did point out, however, the one saving grace - that with my cane I'm at PERFECT museum strolling pace, so for the bulk of the day Friday I didn't even feel like too much of a pariah. I hit the National Museum of Natural History (walk-through butterfly room and 3D Imax Deep Sea experience!), the American Art Museum (ANSEL EFFING ADAMS! including a new favorite), and the National Portrait Gallery (AMAZING Women in Photographs exhibit and Recognize!, which put a huge smile on my face!).

The day before I left I randomly discovered a Shepard Fairey (my future husband) exhibit at a little gallery, which we hit on Saturday and was pretty much the greatest thing I've seen this year. I LOVE him! We also hit the FDR memorial (at Susan's recommendation) before the torrential rains came down - it was incredibly moving and oddly timely. Funny how history so faithfully repeats itself. We ate a lot of good food, drank a lot of good beer, and generally had an awesome time. Oh and I had Krispy Kremes!!! Can't get THEM around here! And miraculously won 4 pool games in a row, which I would have thought impossible. Sunday we went to Dulles Air and Space, not the most handicap-friendly place I've ever been, but insanely cool. I saw the ship model from Close Encounters of the Third Kind!

By far the best/worst cane-related incident occurred at brunch Sunday, when a small child in line ahead of us exclaimed not once, not twice, but THRICE "Look! That girl's an old man!"

I'll just let you sit with that one for awhile, because it pretty much blew my mind. :) In the moment I decided to opt for laughing and saying "That's by far the funniest thing anyone's said to me since I got this thing!" though of course after a time I got to stewing about it. "Look! That little boy's an asshole!" Harrumph. Funny, though! I guess?

It was really the first time I've felt incredibly self-conscious about my condition, which is actually kind of surprising for how paranoid I am. Honestly 99.9% of the time I'm just so focused on getting from one place to another that I don't even think of it, but his comment was pretty stunning. From the mouths of babes!

This afternoon I'm seeing Ali and John's "Voodoo Doctor", a chiropractic practice that specializes in Network Spinal Analysis - I can't wait to see what my spine has to tell them! Tomorrow back to the pool for the first time in a week and a half - I am DEFINITELY missing it something fierce. And Friday we see if I can still dance with a cane! :)

That's why my philosophy keeps me walking when I'm falling down

Well, I've been entirely crutchless now for nearly 5 days and, aside from a minor setback resulting from trying to maneuver a month's worth of laundry down the stairs, have been doing a-okay! Frankly the biggest problem right now is that my STUPID EMAIL is all screwed up, and I haven't been able to access it since Saturday night. Very annoying. Otherwise, though, I am VERY much looking forward to my trip to DC tomorrow, and am stocked with 2+ hour long movies (and Battlestar Galactica), back issues of Harpers and of course books for the journey. My dear friend Kevin has sent many musics my way of late (along with this FRICKING FANTASTIC Radiohead Sigg!), so I've been rocking Ben Folds nearly constantly, and keep singing "La LAAA la la la la la la Zak and Sara!" incessantly the past few days, much to the delight of those around me, I'm sure! Dean also hooked me up with a sweet theme song, Girls on Crutches from Hawksley Workman's Los Manlicious - I'd never heard him before and he's superrockin'!

I think the biggest lesson of the past 3 weeks (and, really, of being a patient in general) has been something along the lines of "Ask and ye shall receive" - and you know I'm not one to throw Bible quotes around lightly! But nearly all the assistance I've gotten (from starting pool therapy to getting a cane to weaseling free laundry out of Van Deren) has come from simply inquiring about it. I recently read this bit in Salon and it really resonated for me. I see so many woman posting on hip messageboards that are just floating along at the mercy of their doctors, going into surgery not even knowing how long they'll be hospitalized, whether they should do PT afterwards and what's "normal" to expect. Not I! I ask approximately 3 dozen questions at every visit, and even though I've been averaging a doctor's appointment per week for the past 6 months, I'm still voracious to know more and more and more. Modern medicine won't wrest control from my little hands! :) I often find myself thinking of



haha That's me!

I really appreciate folks' responses to my blog (a phrase that still makes me feel more than a bit dorky!) and, especially now that my emailing has been abruptly curtailed, hope they keep on coming! Tomorrow, TO THE CAPITAL!!! :)

Ambulatory Roshambeau

So Cane clearly beats Crutches, though, hard as Cane tries, I'm pretty sure Stairs beats them both. Cane is pretty boss, though - it's nice to be able to maneuver around without having to worry about an extra foot of clearance on either side. At this point the only real hurdle (in addition to the fact that I'm right-handed and have to hold the cane in my right hand [and that it falls down every time I try to casually lean it on something]) is doors that open to the right, but I'm working on it. The past two days I've gone without the crutches entirely and haven't felt any ill affects, so long as I've kept my pace slow. The fact that I nearly topple over if I get going too fast is a helpful reminder. :) I even SHOPPED yesterday! First time I've done THAT in a while - motored around Marshalls for nearly an hour and was only mildly exhausted.

Tomorrow I see Janice, the nutritionist, about my pesky cholesterol problem. Cheese for every meal today! Friday I got my bloodwork back and it turns out I need to get my 3-shot Hep series and that my Vitamin D is low, so I'm taking a supplement for that. Otherwise, looking forward to getting more cane-able over the next couple of days so I can hopefully foolishly defy my PT's orders and go crutch-free to DC!

Harrumph.

Well, I'm still on crutches and it seems will be supported by some manner of stick for some time to come. Yesterday I ordered myself a cane! (Akin to this guy - that's called a "derby handle", dontcha know! I didn't!) It's collapsible, which means I can keep it with me for whenever I need it, and can put it in my bag for my trip to DC next week. I asked Susan if I would be a fool to leave my crutches at home and she said yes. HARRUMPH!

While I can walk (slooowly) without pain, I'm so cautious about it that Susan said I was "an accident waiting to happen". "I can't say that to anyone but you!" she said. :) It's true, though, I'm so nervous I'm going to mess something up that I probably will! There's also something to be said for giving people around you some sort of visual cue to indicate you need a little extra room and maybe assistance. Wandering the jampacked streets (and public transit system!) of DC in my own tottering way just doesn't seem wise.

Susan also showed me an alternate crutching technique where instead of putting 2 crutches forward and stepping, you move the right crutch with your left leg and left crutch with your right leg. It takes some getting used to and uses different arm muscles, but it feels comfortable (if slow - did I mention I'm slow?!) and also works the muscles of my left leg that've been dormant for nearly 3 weeks now, the ones that make me feel like I'm doing a wobbly circle around my left hip everytime I try to put weight on it to move my right leg. Turns out that's my gluteus minimus struggling in vain to keep me stable and, while my pool excercises do some to help strengthen it, I just lose more control every day I'm off it. Susan also pointed out (which hadn't even occurred to me) that because the pool is pretty much non-weight-bearing, I'm losing bone mass with every passing crutchy day, which is exactly what I DON'T need going into surgery. *sigh*

So I'm going to keep crutching for medium distances and am excited (really? really.) to pick up my cane this afternoon and get working on it - should be ideal for the store tomorrow. Susan thought it'd be good to have 2 canes for times when I feel like I need it, so I'm also hoping to pick up a sweet wooden cane or two now that I know how long they should be. I have to keep reminding myself (and my mother, who for some reason has decided that skepticism is what I really need right now) that this is all NORMAL for dysplastics, and that I'm lucky I haven't been crutching for MONTHS now, or even in a wheelchair! It's impossible to predict how frequently I'll need some stick support, because it really depends on the day, but I'm getting it all lined up anyway. I can tell already it's going to be a pretty "indoors" winter for me this year!

Meanwhile, I went in front of the faculty meeting Tuesday on crutches, so now everybody's curious about it. I entertained the thought that I might put out a memo to everyone explaining the situation so I don't have to keep going over it everytime I walk - or "walk" :) - down the hall, but then I remember that that was my original impetus for getting this blog up, and I still say the same shit a dozen times a day! Oh, best laid plans. I need to work on adjusting my attitude to all these concerned inquiries, though, because people just can't seem to NOT ask and I've found myself starting to get a little curt about it. But people are SO eager to offer any help they can that I feel like a jerk getting annoyed about it. Oh, and to think I used to so love any attention I could get! heh heh

Yay!

Today I walked all the way to the cafeteria and back, including stairs, without my crutches! Nothing popped, nothing snapped, and nothing pinched, really, though I was definitely taking great care to go easy on ol' leftie. More than anything it's my dreaded sciatic that's acting up, along with some referred pain in my knee. I'm looking forward to some ultrasound massage and blessed Kinesio tape tomorrow, then (hopefully!) back on my feet for real! It'll be nice not to spend 8 hours on Saturday sitting on a stool at the store feeling useless, that's for sure. A week from tomorrow I head to Our Nation's Capital - woohoo!

Live on two legs

Or at least sometimes two! The past few days I've been doing short distances without my crutches, and life is pretty good! The twinges and soreness are of an entirely different sort, which to my ever-optimistic mind (ha!) is more evidence of how this setback has actually been pretty helpful. The pool yesterday was really great, and Thursday I'll see Susan to get the all-clear, though I doubt I'll give up the crutches entirely until next week.

The whole thing has slowed me down to the pace that I probably should have been walking at for the past year. For all the changes I've made to my life, I really hadn't curtailed my walking speed (or, to some extent, distance) much at all until now. I do like to STRIDE CONFIDENTLY through life! I may take Chris up on his cane offer if only to a)remind myself to take it easy and b)give people a visual cue indicating that I'm not just a naturally superslow walker. :)

I was at the Health Center for 2 hours last Friday for my physical, and kept thinking "Gah, medicine is so COMPLICATED!" Got my bloodwork back and learned I have high cholesterol and possible indications of a "fatty liver" - when I told my mom (whose 4 siblings also all have lower back and hip problems) she said "Oh, we all have that!" So apparently that's my inheritance from THAT side of the family. From my dad I guess I got... procrastination, puns, and alcohol tolerance? Mixed blessings all around! So I'm going back to the nutritionist to talk cholesterol and add another layer of paranoia - I mean understanding - to my mealtime repertoire. And I had more bloodwork done (I asked if they could use the same hole from Wednesday) for some stuff I don't even really remember. Thyroid and Vitamin D and something... we shall see.

But, more importantly...

6 months ago today...

I was diagnosed with bilateral hip dysplasia. To say I was stunned would be an understatement. Dr. Crose gave me the short version of what I might expect, estimating I'd need dual hip replacements by the time I was 35-40, a mere 7 years away. Seeing my reaction, she said "Well, at least you don't have cancer!" which at the time seemed a bit cavalier. It's taken me months to understand how lucky I am to have something that's treatable, something I can DO something about and not just succumb to. There are definitely still woe-is-me moments where I lose sight of that, but not nearly so many as there were in the first weeks after my diagnosis. 2008 started out hard for me and just got harder, reaching the pinnacle exactly halfway through the year when my beloved Joon had to be put to sleep on July 15th. I just stopped functioning, something that was all too easy while on my summer schedule. But I had to keep going to the pool, and 2 days later I did just that, clearing my mind in a way I just couldn't on land. As often happens, one of the other ladies in the deep end struck up a conversation with me, and asked "Are you in pain?" I don't think my "Yes" could have possibly conveyed just how much - the question got me right in the gut.

In the past 6 months, I've completely changed the way I eat, sleep, and walk. I've spent 2 days a week in the pool for the past 4 months, lost 30 pounds and started taking fluoxetine (Prozac), something I never ever ever (ever) could have imagined for myself. My biggest buzzword has been PERSPECTIVE, and my life is radically different.

Yesterday I got a call from Annette, Dr. Kim's scheduler, that my original surgery date no longer worked for Dr. Kim. We rescheduled a week earlier, June 10th, 2009, 14 months from my diagnosis date and 8 months from today! You can't see it because this is the internet, but I'm making a triumphant air-punching motion just thinking about it - you know, like Prince Harry! :)

Dogs fear me

Well, last night I met Miss Farrah Marie Powers, John and Ali's ADORABLE new Catahoula Leopard Dog! And... she hates me. :( Or at least hates me on crutches - fine and loving otherwise, but couldn't stop growling at me when I was on 'em. Pity, especially given how much time I spend up there... and how much time I'll be spending on crutches!

Notes to self:

* Getting fasting bloodwork done when you need to take your meds with food is a bad idea.
* Getting any bloodwork done when you're on crutches is a very bad idea.
* Invent device that bleeps out every time John McCain says "my friends".

Sun is shining, the weather is sweet...

Oh, another crutchy day! I'm getting much better with them, of course, and can navigate most scenarios with relative ease. Nearly tipped myself down the stairs this morning, but only because I wasn't thinking - when I'm paying attention it's really not that bad and I feel superspeedy, though realistically I'm still moving at a snail's pace and attracting pitying looks wherever I go. I need to come up with a better story than the truth of why I'm on them, which is pretty boring - spelunking accident? unicycle crash? legerdemain mishap? Hm...

I can't say enough about the pool, the pool, the pool, and how crucial it is in making my life liveable right now. Yesterday in lieu of 15 minutes each jogging and skiing with floats in the deep end I opted for 10 minutes each with THE BOOTS.



I figured I could use some strength-building in my left leg, which I've found I can put more and more weight on in the past couple days. I'm sore today, for sure, but it doesn't hurt, a distinction that may not make a whole lot of sense to folks who haven't dealt with a bum limb. I hesitate to say it, but I think the snapping pang that put me on crutches to begin with may have panged away the pain I've been experiencing for over a year now. Mostly what I have now is actually knee pain, which Susan thinks is just transferring from my hip. And I'm tired. All. The. Time. Last week I averaged 2-3 napping hours every day after school without even intending to.

Otherwise I'm doing pretty well, though this 600mg ibuprofen 4x a day is insanely dehydrating. I mean, I drink a lot of water normally, but I just can't keep up, and it's only getting drier around here these days - I'm definitely not going to be able to keep taking as much through the winter or my lips will chap right off.

I have a physical on Friday, my annual exam next Wednesday, and get reevaluated by Susan next Thursday. Somewhere in the next two days I also have to make it to the hospital for a bunch of blood work - it's a good thing my job is so flexible! I suspect Susan will let me off the crutches entirely, as even now I can make it short distances (mostly bed to bathroom or kitchen) with nearly full weight-bearing. Frankly, I'm scared to go back to walking on two legs because it seems like the more I do it now the less I'm going to be able to do it in the future. My old friend Sisyphus yet again! I mean, I really don't want to truck my crutches down to DC with me if I don't have to, but what if I suddenly need them? Chris has kindly offered me the cane from his unfortunate skiing accident last year, so I'll at least have that going for me.

*sigh* And somehow, after dropping weight consistently over the past 6 months, I've gained 7 pounds since being on crutches. It's so infuriating! I mean, I know it's likely muscle replacing fat, since I've definitely been eating less and working my arms a lot more than usual, but it's still disheartening. As my dear friend Novel would say, BAH-HUMMUS!

Oh and I got my "Preparing for Periacetabular Osteotomy" book from Children's Hospital yesterday - so exicting! Slash terrifying! :) On first read there were no major surprises (except that I can't leave the hospital til I poop, which is a little intimidating!) and it always feels good for my habitual organizer's mind to get some more ducks in a row. I also heard back from Erin, Dr. Kim's PA, about pain management and it seems folks have had a lot of success with acupuncture, of all things. I'm definitely interested in pursuing it, though of course now yet another Great Insurance Finagle (GIF!) begins. They sure don't make it easy!

I'm a bad crutcher.

I took yesterday off, which was a phenomenal decision. I went to the pool in the morning and did my regular routine, albeit a bit slower, with some added arm stretching and just plain floating. Rebecca, my original pool PT (though I've been independent in the pool for some time now) noticed that I was struggling with my crutches and, when I got out, had one of the other ladies there give me a little tutorial and fit them better to my height. Yet again I felt a ripple of the dry-land versus aquatic therapy turf war - everything is politics! But I'm definitely glad they took the time to set me right - took the pressure off my ribs and (somewhat) off my shoulders and put it more into my forearms where it belongs. Today at school I made it all the way to the Main Office and back (a distance of approximately 17 miles)! It only took me... a very long time. :)

It seems pretty much impossible for people to not ask what happened - I'd put it at about 7%. As such, I've developed a series of one-liner responses, the easiest of which (that I'd resorted to by the end of the debate last night) is "I have to stay off my bum leg for awhile." Also pretty much the most honest answer I can give - I don't even know what it is that's paining me, really. People have been so so nice, though, offering any sort of help I might need, and for once I'm going to be taking it! My usual staunchly-independent "Oh no, I'm fine" is out the window!

Doing stuff around the house is a real challenge. For the first time I'm cursing the shotgun layout of my apartment, though I'm getting really good at thinking ahead (I've got plenty of time on my hands!) about what I need from where and how I can get it there. My bed has become the way station for everything, since I can toss things onto it from any room. Brilliant! The ladies of hipwomen were kind enough to suggest a walker (which hadn't even occurred to me), which you can hitch baskets and holsters and such to, for stuff around the house, especially meal preparation. I'm looking forward to a non-sandwich-based meal for a change. What I'd REALLY like (and what Van Deren also thought of, since we're both such great minds) is one of these!



Yesterday in the shower I involuntarily made what can be best described as a James Brown Sound (as in, "UNH, git back!") and giggled hysterically for a good 20 minutes. You have to laugh!

Dude, crutches suck.

I mean, honestly, how the eff are you supposed to do this?! I've only been on the things since 3pm yesterday and already I have massive swollen bruises on my ribs and my arms are en fuego! I had to use two hands to turn my stinking key in the lock!

On the plus side, Susan Kinesio taped up my elbows and left shoulderblade, as apparently it helps with bruising as well - oh how I love the stuff! The shoulderblade is what's really giving me trouble right now, since it's pretty integral to the whole crutching business. That said, being off my left leg feels right, and I'm doing my damnedest to be non-weight-bearing, though it's quite a chore. I'm to be non-weight-bearing-to-tolerable for the next 2 weeks, then will see Susan again to reevaluate before I head to DC.

This is a fairly scary sneak peek of what next summer is going to be like - though then I'm not going to be able to cheat at all, which at this point seems impossible. I have no idea how I'm supposed to do things like laundry, cleaning the litterbox, making myself some damn food, etc. - you know, things that require HANDS! I think I need a fanny pack. :) Thankfully Tucker let me drag along with him to the grocery yesterday, and Chloe lent me a backpack to ferry my wares up the stairs (rhymetastic!). Otherwise I don't know what I would've done.

Harrumph. I'm pretty sure I'll be taking tomorrow off.

Ah crap.

Well it seems the bad thing I did on Friday was probably a sprain or strain or tear or somesuch to my beleagured left thigh. It hurts. I saw my primary this morning and she upped my dose of ibuprofen to 600mg, told me to take acetaminophen on top of it and that I'd need to be non-weight-bearing for 4-6 weeks. She was about to give me crutches there, but then thought perhaps a cane would be more appropriate and said I should see my PT to be evaluated. Well, my PT's scheduling for the end of October right now, but thankfully, since she is awesome, she's working me in first thing tomorrow (or this afternoon if she has a cancellation) for a fitting and a little crutch-training. Thank you Susan!!!

Of course this means I'll likely be crutch-bound for my trip to DC (which my mom thinks I should cancel anyhow) AND for Halloween, which just sucks. I'm wondering if I should try to incorporate the crutches into my costume (in which case I need some suggestions!) or not even bother - in any event, it's going to put a crimp in my dancing plans at the Freakers Ball. CURSES!!!

I feel like there's a joke in here somewhere about me and the economy not having a leg to stand on. :)

I took a tumble.

Yesterday at my folks' house I was bumbling around getting ready for my mama's 60th birthday brunch (which was awesome) and stepped back into the treadmill, falling with not a dang thing to catch myself on. I bounced my left shoulderblade and right elbow off the wall, smashed my left elbow on a stack of I don't even know what (the resulting multitonal bruise is quite impressive) and landed my aforementioned left butt right on the corner of the treadmill. I now have a purple 5-inch equilateral triangle on my bum. And on the side I was already limping on! Geez, I just can't catch a break. :)

My mom and I talked some about plans for my infirmity post-surgery and she made me a little nervous, talking about how hard it's going to be for her and my dad to get me into the house and wondering aloud if I might just go to a "halfway house" (or live with my 94-year-old grandmother, which I think was a joke?!) until I'm functional enough to go back to my apartment. *sigh* I mean, we have plenty of time to work things out, but I need to feel like my plans are stable enough that I can not worry about them, and instead focus on the actual mechanics of getting better. I asked if she'd been reading I am PAOed (she hasn't) to get a better idea of what to expect, saying "I don't think you understand what it's going to be like" and she said her classic "I hate to tell you, but... I think it's going to be very painful." I was like "Ah... yeah! They take a chunk out of my pelvis!" I don't know - for me sucking up as much information as possible is what helps me keep a level head (relatively!) about it all. I think for my mom (who won't even look at the diagram of what the surgery is) it just makes it all the more scary. Hopefully that will change over the course of the next 8 months - I can't be the only one who knows what's going on!

On an unrelated note, if you haven't heard it you should check out TV on the Radio's new album, Dear Science - I CANNOT stop listening to it! Totally. Awesome.

Ohhh I did something bad...

Eddie Izzard has this bit about chiroprators ("they're different from osteopaths... because of the spelling") in which he talks about how they crack your bones and you go "Ahhh!" but sometimes you just go "Errr?!" - I had that today. One of the most common symptoms of dysplasia (and the first I ever manifested) is cracking/popping hips. Most of the time that cracking results in the best feeling of relief you can get, at least in the short-term, but today I definitely had an "Errr?!" moment. Something other than my regular popping popped and now my usual discomfort is gone, replaced with new pains in strange places (I believe the industry term is "my left butt") and the inability to put full weight on my left leg. Hopefully this is only temporary!

There's a lot doctors don't know about why dysplastics hurt the way they do. I asked Dr. Kim "So, what is it that hurts when I'm feeling this pain?" and he said "That's a good question! We really don't know." My PT was saying the popping is probably the iliotibial band (that runs down the side of your leg - see illustration) moving. From where to where... uh, I dunno. From somewhere bad to somewhere good? Maybe? All I know is my damn leg hurts, and I can't wait to get home to my icepack!



Oh, and I went to put on my precious precious beloved Earth shoes this morning and discovered that Augustus the Destroyer had chewed one of them apart! I swear he thinks he's a dog! I fear I will be pouting over these sandals for some time to come.

Papa

My grandfather died ten years ago today, and my uncle sent out this fantastic photo of him, which brings a tear to my eye and a smile to my face.

Snake! Dragon! SWORD!

What more could you ask for in a cane?!



John Powers is determined that my recovery will be a badass one. :)

Let's get physical!

(Sadly these fantastic pants were only available in small!)

Last Thursday I didn't make it to the pool for various reasons (work, meetings, late night viewing of Speed Racer, etc.) and had a real rough time of it this weekend. I sat down after work and grocery shopping Saturday night and just couldn't bring myself to get up again. The thought occurred to me that maybe obsessively pushing myself in the pool twice a week, increasing reps and resistance might actually be making things worse. Today I'm going to scale back a bit, and focus more on stretching. I spent a lot of time cleaning my place yesterday and managed to jack myself up pretty good with the dastardly vacuum. It'll be nice to be warm and buoyant for awhile.

Here's my regular pool routine, for those of you who're interested. The order of exercises is flexible, depending on where most of the pool traffic is at the time - it takes me about 75-90 minutes altogether. I can't advocate aquatic therapy enough! Oh, and remember to "tighten the belly and tuck the butt" (my PT's mantra) in all scenarios. :)

* 10-15 minutes walking the width of the pool, including walking on heels and toes, as well as this knee-swingy manuever I can't quite describe
* 1-minute each stretches with leg parallel to the floor, floaty noodle under the heel
* 1-minute each stretches with leg bent and floaty noodle under foot behind you
* 90-second calf stretch, with heels hanging off the first stair
* 10-15 steps up with right leg leading, 10-15 with left leg leading
* 10-15 steps down with right leg leading, 10-15 with left
* 1-minute balance on one leg with arms folded across chest (bonus: try closing your eyes!)
* 10 squats standing on left leg, 10 standing on right, arms crossed
* 10 toe-raises standing on left leg, 10 standing on right, arms crossed
* 3 minutes sitting on a kick board in the deep end with a floaty belt on, arms crossed (this is MUCH harder than it sounds!)
* 2 minutes "toes dry" with float belt and float collar (kind of hard to picture - basically a crunch pose but easier on your back with the floatiness and all)
* 10-15 reps "toes dry" crunches, both legs at once
* 10-15 reps alternating single legs, "toes dry"
* 3 minutes on the chair with flippers, raising alternating legs from bent to straight
* 3 minutes on the chair with flippers, flippering with legs parallel to the ground
* 3 minutes on the chair opening and closing legs parallel to the ground with these wretched fan things that attach to your ankles and make a ton of resistance (sadly I cannot find a photo online)
* Usually last I put on the floaty belt and either ankle floats or the badass caterpillar boots (depending on how sore I am already!) and head to the deep end with my barbell floats for 15 minutes each of jogging and skiing. Three times (first, in between and last) I do a 1-minute jesus float (probably not the technical name) and 1 minute of swinging my legs back and forth with the floats still on the surface of the water. Both of these manuevers make my spine feel better than anything else I can do for it, and the swinging stretches my sides/top of the hip in a way I cannot duplicate on land. When I made my surgery decision I added the barbell floats to my jogging and skiing, trying to replicate the crutching motion under water while working against the floats' resistance. I'm happy to report I already have slightly-less-shameful biceps (see example below). heh heh



Oooh and Friday I found a pair of Danskos in my size for 22 DOLLARS at the consignment shop in town. Score!

PS I had a 45 of Olivia Newton John's classic when I was a child that I used to rock repeatedly on my Sesame Street record player. And does anyone else remember Get in Shape Girl? I wanted that one with the ribbon on a stick SO bad! My mom got me the one with ankle weights. BOOO!

My haunch hurts

I'm trying to think of creative ways to describe the location of my discomfort (I also like "flank"), which today is centered around my right (yes, right, curses!) haunch. I think, though, that it's unused-muscles-getting-stronger pain and not joint-falling-apart pain - an important distinction I've come to understand all too well at this point in my life. "Haunch" is also helpful as a verb (which it isn't), as in "I was haunched over an ice pack all evening." Did I mention how much I love ice? I love ice. :) Earth Therapeutics Thera-Belt has also been helpful (though I got it for $9.99 thankyouverymuch!) but it doesn't hold the cold quite long enough for both sides of my beleagured midsection, so I sometimes just use it to hold an ice pack in place - it does the trick!

My shoulders owe a huge debt of gratitude to Jon Kemp and his time-tested hardcore massage technique. It hurts, but it makes an amazing difference - he worked a knot out in my left shoulderblade (which is apparently where my stress goes when I put it out of my mind) that I'm pretty sure's been there for nearly a year. I can really feel the difference when I'm in the pool, since so much of what I do focuses on balance. Boy's lucky he doesn't live nearby or I'd be requesting his services nonstop. Though I'd provide him a nice supplementary income!

In an effort to prepare for my months on crutches I've added arm-strengthening elements to my deep water exercises at the pool. I'm going to be jacked! Turns out dysplasia's a fine reason to renovate and remodel the ol' corpse - the prospect of no longer being able to walk is an effective motivator, believe you me! Um... but not like Madonna jacked, I don't think. And I'll have that one useless leg going on, so... Rats! It's a very odd Sisyphean sensation to be so consciously building up my strength so that I can be better prepared for a surgery that will take all of that strength away. Not to mention that I'm actually getting worse every day no matter what I do. Am I allowed to say "mindfuck" on the intarweb? :)

This post is dedicated to Mike Lowell, my favorite person with a torn labrum... besides myself.

Canes Galore!

The competition for Best Cane Ever just heated up!



Thanks BJ! :)

hahahahaha SWEET!

The Pathlighter Cane!

Thanks Adam! :)

9 months is a long-ass time...

...longer, even, than I've known I have this condition. What the hell was I thinking I would DO for the next 9 months?! Geez. Saturday I worked my 8-hour shift at the store for the first time in 3 weeks (following Jim & Liz's wonderful wedding and the aforementioned Boston-based extravaganza) and for the first time thought "I don't know if I can do this." It'd been a tough week for both hips (I feel like I should come up with names for each of them) and, even in Earth shoes, 8 hours of nearly-uninterrupted standing is less than ideal. I got home and slept for 2 hours.

Given that I can see a light at the end of this (albeit lengthy) tunnel, I'm considering exploring my pain-relief options above-and-beyond ibuprofen. Apparently because the bursae (plurar of bursa, like bursitis) in your hip are so close to the surface they can treat them with topical cortisone instead of an injection. They caution against it, as I think I mentioned before, because of the degenerative nature of the condition. I'm hoping, though, that now that I'm on surgery countdown maybe I can get some short-term relief.

The question of medication has been weighing heavy on my mind of late. I've never even broken a bone before, so the prospect of being on high-caliber painkillers for upwards of 2-3 months is a little daunting. The only surgical experience I've had was having my wisdom teeth out, and the meds I got for that (Flintstones vitamins compared to what I'll be getting for this business) just slayed me - I was non-functional. It's going to be hard enough giving up my summer to crutches - I can't fathom losing it completely to a weepy drug-induced haze. I gather much of the pain regulation is going to be at my own discretion, though. I'm going to make myself a big "Pain is weakness leaving the body" sign. :)



^Fantastic product shout-out of the day^ - this thing has completely changed my sleeping life!

6 months ago this would have meant something so very different...

I HAVE A DATE WITH A SURGEON!

Who: me & my man Dr. Kim
What: LPAO
When: Wednesday, June 17th, 2009
Where: Beth Israel Deaconness Medical Center in Boston
Why: to get drugs- I mean better

And now... the REAL panic sets in. :)

*th-th-thump*th-th-thump*th-th-thump*

(An impression of the sound my fingers make as I compulsively tap them on my desk in anxious anticipation.) I'm waiting to hear back from Annette, the scheduling woman in Dr. Kim's office, about actually setting the date for my PAO. I don't have an emoticon suitable for this feeling...

So in the meantime... let's talk about SHOES! I have to give a big shout-out to Earth Shoes, which have saved me so much discomfort over the summer (my favorite shoes EVER), during the school year (though mine are an older version of these), and in general. These last ones, which are called ROCKET (\m/) I bought for walking (it was so nice to be able to tell my mom, ever the spendthrift, "I have a prescription for new shoes!") soon after my diagnosis and Susan, my dry land PT, just adores them. They're supercomfy, insanely supportive (though you do feel kind of like you're going to topple over on the stairs) and vegan, if you care about such things. I've rocked the Rockets for the past couple of days and they've really helped me get back on track from my weekend strain(s).

Shoes are tough for me lately because I have so many pairs I love that I really shouldn't wear anymore. Thankfully Eric's beautiful pup Bella helped me out some the other night by chewing the end off of one of my beloved Reefs, which I REALLY shouldn't wear but can't bear to give up... well, couldn't bear to give up before they had a serrated heel, that is.

Hmmm... yes... stiiilllll waiting... going to sing some Talking Heads to myself now, I suppose. :)

Off-topic musings on the topic of the day

This is the third September 11th I've spent in a high school, and it's always an interesting day. Most of my kids weren't even 10 in 2001, and probably have no concept of how much the events of that day have shaped the country and the legacy (not to mention the debt!) they've inherited from their parents. In the moment of silence we had this morning I mourned not just for the loss of life but for the loss of freedom, the loss of standing in the world, and I think mostly for our loss of perspective. Tragedies on a much grander scale occur around the world every day, and sometimes in our own names - people seem to have lost sight of that, blinded perhaps by all the flags fluttering in their faces.

It was a JROTC student who led us in a moment of silence, as his fellow uniformed students saluted the half-mast flag - it was also from him that I first heard the term "Patriot Day", which has somehow escaped my notice over the past 6 years (probably because I avoid most reporting on the subject). My mind is boggled. What about the losses we suffered on 9/11 was patriotic? Nothing. It incenses me that people are so afraid of copping to the total senseless absurdity of life sometimes.

Wheels of Steel

At this point no fewer than four people have suggested I get a Segway Scooter (sorry, their website informs me it's called a "Segway Personal Transporter"!) which cracks me up because I didn't know four people even remembered those things existed, Mike Gordon aside. Doesn't she just look so NATURAL standing there?! haha I do appreciate the creativity of my fantastic friends - Chris found a cane with a clock in the handle, though I believe John Powers may have trumped him with the suggestion that I get a cane with a sword in it. Poorly-executed Sean Connery impressions (or at least impressions of Darryll Hammond as Sean Connery) are sure to ensue!

I'm trying to plan a trip down to DC to visit Chris (finally!) next month and it's another reminder of how life-altering this condition is. I shan't be strolling the Mall and the Smithsonian this time around! Chris asked me if I might get a wheelchair for the trip, which is... in a word, depressing. I said "Uh... I'm really not at that point just yet." One of the research survey questions at Children's asked "How often are you aware that you have a medical condition?" on a scale of Never to Always. The answer is always Always. The scant moments where I'm NOT thinking about it (usually when I'm running around in some sort of tizzy and/or fog) are the moments when I turn funny or step wrong and go "Owie!" I can't stomach the thought of considering myself "disabled", especially given some of the other folks I see at the pool, but I am limited in what I can do and I need to work on being less bummed about that. I HATE having to say "I can't walk that far" or "I can't sit there", but... I can't. Hey, but I can still throw a mean frisbee!

In other news, thanks to cnn.com I have Hungry Eyes stuck in my head, which I suppose is an improvement over what I kept finding myself singing in my head last night: "Stan-din TALL on the wings of my dreams..." which is, that's right, the theme song to Perfect Strangers. :)

And so it begins...

Yeah, so I know in the song the girl dies, but hip-puns seem de riguer in this business and I love the Roots, so fuck it, The Hipnotic it is!

Oh and hi, welcome to my blog. :) I never really thought I'd have such a thing, but with all the craziness of this year it seemed to make sense. Following several months of increasingly persistent pain in my left hip, I was diagnosed in April 2008 (at the age of 28) with bilateral hip dysplasia. If you google this you will learn lots about dogs and babies, neither of which I, you know, am. But essentially the socket of my hip joint is too shallow, which leads to easy dislocation and the aforementioned pain. By April I was to the point where I was unable to walk without a limp on the left side, especially after getting up from sitting for more than half an hour or so, and waking up in the morning was excruciating.

Thankfully my diagnosis came quickly, after only one set of x-rays, and Dr. Crose, my excellent primary physician, hooked me right up with a physical therapist, Susan Stephen, who is phenomenal. Susan started me with simple exercises to do with a couple balls and therapy bands. From the very first time I did them I felt a huge difference, especially on my left side, where I had lost an incredible range of motion without even realizing it. Weeks of twinges, pangs and pins & needles ensued as I worked to regain even semi-normal function, though all this was nothing compared to the searing lower back pain I began to experience from basically realigning my entire midsection.

Here enter ultrasound massage and Kinesio Tape, my new best friends (along with Susan, my trusty PT), which somehow got me through to pool therapy, which I started in June. The pool... oh, the pool is an experience wholly unto itself. I have seen more, bigger and older boobs in the past 3 months than I'd seen in my entire life previously. I've also experienced the strange sensation of sweating in a pool, which is to be expected when the air temperature is 90 degrees and the water temperature is... 90 degrees! I shudder to think of the toxins I've sweat out onto the poor unsuspecting octagenarians, though I'm pretty sure the (literally) stinking chlorine's killed them off right quick. Uhhh... right, but all that aside the pool is amazing - I'd be miles away from where I am now in terms of strength and endurance without it.

So I've been chugging along well with everything I'm supposed to be doing - taking my piddly daily ibuprofen (since my condition is constantly deteriorating, they don't like to put you on pain meds until they absolutely have to), being mindful of my movements, rocking PT and continuing to lose weight (25 pounds and counting!) - but I'm not getting better. And I've come to terms (sort of!) with the fact that, regardless of how strong or stable I feel, I won't really get "better" without surgery. Here enter Dr. Young-Jo Kim of Boston Children's Hospital, one of only a handful of surgeons on the Eastern Seaboard that performs Periacetabular Osteotomies, the surgery recommended to me by Dr. Bean, the orthopedist at Central Vermont Medical Center responsible for my initial diagnosis. When I saw him he said "I don't know of anyone who does this surgery, but you may be able to talk someone at Dartmouth into giving it a try." Ah, thanks but no thanks dude! And off to Boston I went (4 months later - Dr. Kim's a busy man!).

This past Friday was my first trip to Boston Children's in Waltham, a mere three miles (or 25 driving minutes) from my dear friend Jon Kemp. After some last-minute roadside finagling with insurance (which I could author quite the rant on, given the chance) I went in for my very first MRI. Let me begin by saying that, like many people, I'm terrified of hospitals, mostly because I think of them as a place people go to die, not to get well, but it hadn't occurred to me that, because of its target population, Boston Children's would be a very different hospital experience. More colorful, more friendly, more cutie babies (occassionally screaming) out and about, and sweet fish tanks in the waiting area! Of course it also didn't occur to me that I'd be the oldest "kid" in the place (reading my Harper's with Dora the Explorer on the giant flatscreen), but because they have such a prestigious hip team, everybody pretty much knew what my problem was (at least medically! [haha]) as soon as I walked in the door.

The MRI... well, I was completely freaked out by the prospect of it, but I was totally wrong. Probably the worst part was the injection of the contrast, which produces a very bizarre vein-expanding sensation in one's arm. Here I am today, 5 days later, and my arm STILL hurts! The tech didn't mention that, but I'm assuming it's normal, or at least normal for someone as hypersensitive as I am. I chose earplugs over music for the MRI experience, figuring it'd be more zen, and that the noise of the machine would overpower the music anyhow, which I'm sure it would have. They got me to the point where my nose was in line with the edge of the machine and I could see the cool skylight above me and said "Are you okay there? That's where you're going to be." and I'm thinking "Oh, cool, I'm cool!" as my heart goes "THUMPTHUMPTHUMPTHUMPTHUMP!" And of course they lied to me because 10 minutes later the machine goes "CA-CHUNK-CHUNK!" (it does a lot of that sort of thing) and I slide another 6 inches into the damn thing. I opened my eyes and found myself looking at the inside of the tube. Then I closed my eyes. :)

I can't really explain the sensation of lying perfectly still for 40 minutes while your body feels like it's being pulled through a vibrating microwave. I went on some sort of Internal Fantastic Voyage (probably good prep for my upcoming days in a morphine-induced haze) and felt SO bizarre when I finally got off the table. It wasn't as claustrophobic, nor as uncomfortable as I'd anticipated, and it had an odd brainwipe aftereffect I still find puzzling. I volunteered for a research study on PAOs that will necessitate at least another couple MRIs, though, so I'll have plenty of time for further reflection on the experience.

After a long long wait for my appointment with Dr. Kim (note to self: schedule for Monday mornings, NOT Friday afternoons!) I was taken into the exam room and met Erin Dawicki, Dr. Kim's kind and capable Physician's Assitant. We did the usual intake chat-and-evaluate (which is usually when I realize how truly fucked my left hip is - 10 stinking degrees of rotation!) before being joined by the big man, Dr. Kim. I definitely appreciate his friendly approach to this not-so-friendly procedure, and he laughs when I make a funny, so he's already cool in my book. He confirms for me (then Erin re-confirms) what I've secretly known all along: that I've got a "choice" between a) having this crazy invasive LONNNG-recovery surgery that will likely give me 20 years of normal hip function or b) waiting until the pain is too great to bear, which may happen as soon as 3-5 years from now and also means the cartilage is shot for a PAO and my only option is a total hip replacement (THR - so many acronyms!), which will reduce my mobility and need to be RE-replaced at least once or twice in my lifetime. So... kind of a no-brainer there.

This handy link gives you a good clear cringe-inducing overview of the PAO procedure. Blegh - gives me the willies just looking at it! But that's what I'm doing, dammit, come the end of school. Not that I relish the thought of limping along at this pace for the next 9 months, but I even LESS relish (there's some good grammar for ya) being on crutches for 3 months of the Vermont winter. So I wait, and in the meantime will likely drive everyone (or at least my mom) completely insane with my obsessive preparations. Last night she said "Don't be so worried about it!" and I said "I'm not worried about it, I'm organizing!" which is like maybe 65% true. She told me she could organize it in 5 minutes, which is like maybe 85% true. :)

There are a whole bunch of blogs of ladies who've been PAOed, all of which I've been reading voraciously to try to get a sense of what to expect in terms of recovery. It ain't pretty. After a 5-7 day stay in the hospital post-op I'll likely come home on a walker while working my damndest to get on crutches. I'll be crutching for... 2 months maybe? before downgrading to one crutch and then a cane. So be on the lookout for sweet canes! Oh, and "home" post-op will be my folks' house, which can be made relatively handicapped-accessible, unlike my apartment. So, yeah, I'll be at the mercy of my mom, for better or worse. And, at least at first, for going to the bathroom and showers. :( When I was telling Andrew and Jon about it (and many thanks for letting me vent, boys!) Jon said "So wait, you want us to come up to Vermont in June and kill you?" hahaha It's funny... because it's true. At this point I'm not even freaked about the pain (because what's the point?) but I'm very anxious about the complete and utter loss of independence.

Oh, and my right leg developed a new pain after I saw Dr. Kim, which is just great. Though also dysplastic, rightie's been largely asymptomatic (aside from mad sciatica issues) and Dr. Kim doesn't feel it will worsen significantly even with bearing the brunt of my weight throughout next summer or that it will need to be PAOed as well. As he said "We only operate on the hip that hurts", which sounded great to me... until my right hip started hurting. Still, I know I pushed myself too far Sunday at the ENORMOUS Brimfield Flea Market with the Kemp boys, and I'm hoping this is just an aftereffect. We shall see.

Dear lord this is a lengthy ramble. The first of many to come, I'm sure!