best laid plans

I miss writing in my journal.

I miss keeping a record of my life. I miss other journalers, especially ravengirl and nanila and ernestinewalker. I miss core-dumping the contents of my restless brain in over 140 characters per line.

* * *
For a while, my journal turned into less of a life journal and more of a hip dysplasia journal. My life was all about my dysplasia, too. With the exception of occasional check-ups with my surgeon and yearly exams for a long-term study, I'm done. My time as a hip patient is over. There isn't a catch. The surgeries worked and my hips are fine.

My right PAO was two years five months ago, my left one year five months, give or take a few weeks. I don't know how long they will last. I don't worry about it. I'm just living again. And walking.

* * *
Three things are different this year:

1. As I mentioned, my hips are healed. I don't even need a cane. I was evaluated as not having a limp. I have two free hands for the first time in five or six years.

2. The National Hockey League has just ended a long lockout. I'm a season ticket holder. I'm used to going to games when it gets cold. I was surprised by December because hockey hadn't started yet. I was confused by opening night because it was January. I'm really disoriented, but I missed my team.

3. Inspired by ravengirl, I started volunteering with cats at an animal shelter. I was encouraged in this by Seatmate and aided by the awesome volunteer who introduced us to Rocky back in May 2010. I started about three months ago and I love it.

There are several volunteer positions available with cats. I decided to help with cleaning (cages, litter boxes, floors) because I knew the shelter had trouble getting volunteers in the morning. Within a couple of weeks, I was doing whatever needed to be done: feeding, washing dishes, folding laundry. (I get a lot of love for doing laundry.) And spending time with cats.

One of my favorite things about the shelter is that I'm not a hip patient there, or an Ehlers-Danlos patient, or anyone but another volunteer. A few people know about my hips, but I don't talk about EDS. I like that people don't know. The hard floors are tough on my knees and I'm sure everyone's seen me limp, but I'm 42 years old, and so are my knees.

The community of volunteers is strong and welcoming and I fell right into it. We're all satisfied in different ways by what we do, but we're all there for the same reasons: to help cats get through being in the shelter and get them adopted into new homes. We thrive on updates and photos sent by adopters. When you're used to seeing a cat in a cage, it's so great to see him sprawled on a bed.

* * *
So that's my story at the moment: cats, hockey, mobility. I hope you're all well. I've missed you.

I'm still angry about yesterday.

It was the biggest game of the year: Vancouver, who lost to Boston in the Stanley Cup (National Hockey League) finals last June, was back in town and looking for redemption. The arena was sold out.

Big games are good times for season ticket holders. We know where we sit, the people who sit around us, the path we take from entering the building to watching the game. We know the ushers and the elevator operators (since I'm still using a wheelchair while my hip heals) and the guy who serves fries at the nearest stand. We were psyched.

The first suggestion of trouble came from the elevator operator, who informed everyone that hers was the only one running. There are only two elevators in the building (who builds a 17,000 seat arena with two passenger elevators?) and one was down. She was taking disabled passengers and people going to the Promenade level, for which there is no other access, and that was it. Everyone else had to find their way via the (extensive) series of escalators. The collective tension and anger hung in the air like smoke.

We escaped the elevator at the fourth floor and went to our section. As I crutched down the row, I heard the people behind our seats say something about a problem. And there it was: disaster. My seat, the end of the row against the wall, was destroyed. Not just broken. Wrecked.

Seats at the Garden are long rows of steel chair frames bolted into the concrete with individual seats for each chair. Once before, I had arrived to find the seat part broken. We called an usher, who called maintenance, who fixed the seat before game time. It rode a little low, but it was safe.

This time, not only had the seat been pulled out and left sitting on the floor, but the steel frame of the chair had been ripped out of the concrete as if by an angry giant. Inconvenience aside, it was an impressive sight.

My seat -- the seat -- had been getting weaker and more damaged in the couple of years I've known it. It's never been in good shape. Seatmate thinks the bolt holding the frame was probably loose and maybe someone more amused by vandalism than I am gave it a kick from behind. Once it came free of the concrete, the vandal probably figured he'd finish the job. The Garden will have to replace the whole row (about ten seats).

Seatmate went off to lock up the wheelchair and, not realizing the extent of the damage, pick up our usual pregame food. We both separately called ushers, who called maintenance. By the time a maintenance guy showed up, the pregame montage had started. Maintenance took one look at the seat and said he couldn't fix it (duh). We sat in a couple of empty seats in our row (no doubt held by people arriving late) while the game started and the Garden staff tried to figure out where to put us.

Finally, an usher came to get us. I put on my backpack and grabbed my crutches; Seatmate carried my seat cushion (one of the bones broken in surgery is the the "sit bone") and the tray of cooling food. We followed him to the other end of the ice, where he gave us folding chairs at the far end of the handicap seating area, a large flat section for people in wheelchairs.

A side note: whoever designed the wheelchair seating area didn't consider the possibility of the audience in front standing up. When they do, the people in wheelchairs see nothing but bodies standing in front of them. I can stand up, but the people for whom the section was built lose their view of the action as soon as anything exciting happens. Seriously bad design.

Hockey is played in three periods. In the second period, the goaltenders switch sides, but there are still two periods in which the home team's action is concentrated at one end. We chose our season seats at the end where the home team shoots twice, and we paid extra for it. Now we were at the other end of the ice, with the action close to us for only one period. Not happy.

I decided to make the best of it by doing what I always do: shooting the game. Technically, my long lens is against Garden rules, but the rule is never enforced. Of course, I'm not usually exposed on an open platform where I'm easily visible to any bored security guard. Halfway through the second period, sure enough, security tapped me on the shoulder and told me I had to put away my "professional" lens or he would kick me out. I argued briefly and pointlessly, then shut up and put down my camera.

Then I cried. It was the biggest game of the year, we had been looking forward to it for months, I'd been sick all week and was still sniffly and tired, and the whole day was just fucked. I put my face in my hands and sobbed.

Eventually I got myself under control, wiped the migrating eyeliner from beneath my eyes, and took my long lens off my camera. As I sat there feeling sad, the Bruins mascot Blades sat down on the stairs right next to me. Without a word, I leaned my head over onto his furry shoulder. He tipped his head down gently to touch mine. After a moment, I straightened up and smiled, the first real smile I'd had all day, and Blades got up and headed down the stairs to make someone else happy.

After the game, we went to the Guest Relations office to file a complaint. The woman working there had heard the story from half a dozen ushers by then (we're always there; the ushers know us) and was very apologetic. I told her that I didn't expect her to have answers, but I had questions: why was it my responsibility to find my broken seat and report it right before the game? why had no one noticed the broken seat until I arrived? why was this the second time this had happened to me? how do I know this won't happen again?

So now we wait. Seatmate has sent an email to our ticket rep, letting her know about the problem and asking her to make sure we have functioning seats for Tuesday night's game. If they have to reseat us again, I'm not going to be happy, and it's going to take more than an apology to get me to leave the Guest Relations office. As it stands, I think they owe us at least a refund for Saturday, but we'll see.

I've left out a few little details, like the time the flimsy folding chair folded when I sat back down (because everyone in front of me had stood up) and I almost fell backward onto my carefully-broken-and-healing pelvis, and the fact that teams of people clean each section row by row after every event and must have seen the broken seat and ignored it, and how badly I wanted to feed the security guard a straight right to the nose, and how people cursed at the elevator operator (who we love) because she could not take them with all the wheelchairs that don't fit well on escalators, but I guess I can't tell everything.

And on top of everything, the Bruins lost.

Post-op day 57 / week 9.

Left hip at eight weeks.
I had a great eight-week post-op visit. Everything is fine and I'm healing really fast. Two of the bone cuts are almost healed (preliminary healing; the bones will continue healing for about two years, but I should be able to walk in four to six weeks). Only the cut in the ischium, also known as the sit bone, remains noticeably open. "Does your hip ache at the bottom?" I was asked, and I nodded. "That's why." Still, I was promoted to 50% weight bearing, which is a relief for my hands and wrists.

I have no complications and no major complaints so far. I have one very common side effect: my left leg now feels longer than my right leg, which is a strong sensation but all in my head. The hip team tells me that every few months, a patient will literally make them measure their legs to prove that they're the same length. It's incredible how strong the feeling is, but the more I walk, the more normal it feels. The doctors don't know why it happens. They think it has something to do with the brain being confused by the joint suddenly being solid instead of unstable. In any case, it's fascinating and amusing and getting better every day.

So much has happened since last I wrote. My father's mother died on her birthday at either 104 or 105, depending on whom you ask. She was my last living grandparent. She had told everyone that she was ready to go and didn't understand why God was keeping her alive for so long. It's strange to be relieved that someone I love has died, but it's what she wanted, and she had a long, full life before going peacefully in her sleep. I hope she's partying with my grandfather somewhere now.

We took a day trip to the funeral. My sister is buried in the same plot. I left a stone on her grave and crouched there with my hand on the headstone for a long time. I know she's not there, but a grave is a powerful symbol, and it was hard to leave. I always want to sit down and stay with her for a while when I'm there.

Seatmate and I had our picture taken with the Stanley Cup, which was a brief but awesome experience. Nothing really prepared me for the immensity and intensity of the trophy. It didn't matter how many photos I'd seen; it was bigger and more amazing in person. In our ninety seconds or so with the Cup, Seatmate pointed out the new engraving, and I managed to get my fingers on it, and over my favorite player's name, before we were escorted out.

The Bruins' opening night was (mostly) wonderful. The new Stanley Cup Champions banner was raised to the rafters by members of last season's winning team and of the 1972 team, the last Bruins team to win the Cup. Along with the other presentations, a video montage of fan photos from the Stanley Cup parade was shown on the big screen at center ice, and two of my photos were in there. One of them got a good three seconds of screen time. (Here's the other one. It's only onscreen for an instant, but I'm glad they liked it and included it.)

Then the Bruins lost, but what the hell, it was a good night anyway.

I'm still tired from recovery, but I'm getting stronger. I was able to manage both a post-op visit (x-rays first, then waiting, then finally meeting with the team) and a Bruins game on Tuesday night, though I slept through half of Wednesday. The Bruins are home tonight and Saturday. I'm so grateful hockey is back. I can mostly forget about my hips when I'm in my home away from home and watching my team.

And for an extra touch of awesome, World Cup skiing starts again this weekend. I already have the DVR set. So psyched.

I had an amazingly vivid dream on Tuesday night. I couldn't remember which hip was the bad one and didn't know which to favor. I leaned my crutches against a wall and took a few steps, assuming that one hip would feel weak, but they both felt normal. I felt terribly guilty for walking without crutches, knowing I was putting too much weight on healing bone, but I couldn't figure out which hip needed the help. When I woke, I couldn't stop smiling. I'll get there.

Post-op day 30.

I asked my doctor whether I'm allowed to tie my own shoelaces, in case he didn't want so much hip flexing at this stage. He said I had no movement restrictions.

Just in case, I asked whether I could sit crosslegged. No, he said immediately. Then he took a moment to disambiguate crosslegged (kid on a floor) from crosslegged (woman in a chair). Then he said no again to both, at least temporarily.

So does that mean I have no other movement restrictions?

I gave him the look you're picturing. He said, "Just don't go putting your legs behind your head." So I'm sort of guessing at what other unrestricted movement might be restricted and resisting the urge to cross my legs (kid on a floor).

Post-op day 22.

I slept straight through the night last night. I fell asleep somewhere around the 7th inning and I woke up around 6am, cheerful, rested, and not in awful pain from missed pills. I took my 6am pills and went back to sleep until 8:30, when Seatmate woke me to help with my clot shot before he left for work.

(Clot shot: subcutaneous injection of anticoagulant to prevent clots. The syringe is preloaded, the needle is tiny, the whole thing takes thirty seconds and doesn't hurt. I am about halfway through my thirty-day prescription of clot shots.)

Last night was the second time since arriving home from the hospital that I've slept through the night. It's clear and definite progress, especially the part when I woke up and wasn't in terrible pain. You have to count every little victory in a recovery this long.

But no, it hasn't escaped my notice that I haven't updated since September 4th. Where did the time go? How did it get to be three weeks after surgery?

I'll tell you where it's gone: I've been sleeping. Seriously. And when I'm awake, I've been using up my writing energy in long emails and messages, mostly to women preparing for the same surgery I had.

There's a great community of women online (hip dysplasia affects women disproportionately) who calmed me down, cheered me up, and got me ready for my first hip surgery. As a veteran, I like being able to give back to the community. I try to help out the next wave of scared women heading in to have their pelvises broken for the first time. It seems the least I can do.

Here's what you missed: Seatmate went back to work a week after my discharge, I slept through the night for the first time (and now the second), and my hands and wrists have started registering their complaints about weight-bearing. I have wrist braces, but they don't help very much. I can feel the bones slipping apart under the brace. But so far there's no damage, only annoyance, so I count myself lucky.

Last but not least, the Numb Spot has appeared. Most people who have a PAO end up with a temporary numb spot on their thigh, a result of pushing a nerve aside during the surgery. Last time, I didn't have a numb spot and my surgeon teased that he'd try harder in the future. This time, I didn't notice that I have a numb spot until the nerves started recovering after I got home. Hello!

It feels more or less like you'd expect: like small, repeated electric shocks in the numb area, lasting a few minutes to an hour or two, then subsiding back into numbness for a while. It's not my favorite feeling, but it's temporary. The numb spot will get smaller over time until it's either gone or mostly gone, taking the nerve pain with it.

So now you're up to date. What did I miss?

Post-op day 11.

I got home on Tuesday and I've been sleeping and sleeping and sleeping.

I might have been discharged on Monday if not for Tropical Storm Irene, which I watched between naps from my 12th floor hospital room. The public transit system was shut down and the hospital had about half its usual staff. Whoever was doing physical therapy was too swamped to visit, so I stayed in bed.

I didn't mind the extra day of rest until Monday night, when my temperature spiked up over 101 degrees and resisted all efforts to drop. I knew the hospital wouldn't discharge me with a fever, and they kept waking me to confirm the bad news. But when Tuesday morning rolled around, my fever was gone like a bad dream. I demonstrated my stair-climbing ability to the cheerful PT student and she signed my release.

Memories of last year keep coming back to me. One of them, crystal clear, is of lying on my back and typing on the laptop on the over-bed table just above my head. I couldn't sit up at first last year because the cut in the ischium (the sit bone) hurt too much. I can sit up this time, at least for a couple of hours at a stretch, when my head gets tired and my butt gets sore and I have to lie down again. But like everything so far, sitting up is much easier than last time.

I wish I had been updating all week. I'll start now, but Seatmate has just brought breakfast, so more later.

(Seatmate)

Hello again, hello. Just called to say hello.

We had a very nice visit again last night. I got there around 6:30 or so and the door was closed and blinds closed so I figured she was sleeping and crashed in the waiting area with my Kindle. I finally went in around 8 (it was a coincidence that the Sox game started at 8. Honest.) and she was still napping but woke after about 20 minutes or so and we chatted and watched the Sox and chatted some more. Apparently even though I briefly woke her to tell her what was going on she had no recollection of the orth tech being there and assembling it. So she woke up and was surprised to see monkey bars over her head. Funny stuff. She tried to play with the computer a little but but was having a hard time focusing and concentrating and had a mildish headache so we decided to put it away and try again tomorrow (today). To our pleasant surprise the night nurse was her favorite night nurse from last year (She remembered we were the people with the candy in the room - I said there are worse things to be remembered for.) so they bonded a little bit and chatted over ice checks and vitals. There was also a new nurse trailing the regular nurse so they of course went over all the differences between PAOs and total hips and all those kinds of things. She was starting to drop off around 10:30 or so so I took off for home and the kitty.

After a lovely night of sleep and a stop at Dunkin for coffee (size bigass) we had a very nice visit this morning before work. When I got there the nurse was outside her room writing down something important in the log book so I asked if she was sleeping. "Nope, she's up. And she just had a nice breakfast." So that's pretty exciting stuff. Apparently not only had she eaten (English muffin and some eggs iirc) she was actually hungry and wanted to eat and it wasn't because people were bugging her to eat. I'm trying to remember to last year and I'm pretty sure it was several days before she ate and then it was just chicken noodle broth. So we think this is a good thing....

While I was there the PA came in and checked her out (thumbs up all around) and removed her wound drain. The plan for today is to hang out in bed some more and keep doing her breathing exercises. Tomorrow the epidural is probably going to come out and they may try to get her out of bed for a little bit. Then Sunday we plan to hunker down together and watch Irene come to town.

I plan on stopping in after work and kitty time tonight and will take the laptop in again so perhaps we'll try again while watching Wake go for #200.

Cheers!

(Seatmate)

The surgeon came down and talked to us around 3:15. She came through fine - no complications at all. BP maybe a little low but she's always a little low so...
Early results are encouraging that it'll be the same outcome as last year. There is, of course,a long road ahead until we reach that point. But she is one tough cookie and I have no doubt that she will kick some rehab ass. Again.

Her parents were able to go to see her very briefly while she was in recovery and she looked good and was chatty and happy. I'm sure the epidural played a small role in that.

She should be in her room around 6ish and I'll be allowed up to see her then. Just in time to settle in for the Sox game. Because that's what important in all of this. Beckett is pitching after all.

It's finally time: the PAO surgery on my left hip is tomorrow at 9:30 am.

They will also take the screws out of my right hip while I'm under. I'm happy about that. The screws are mildly uncomfortable and I'm looking forward to having them as souvenirs.

I have a few items left on my pre-hospital to-do list, but I'm mostly ready. I can finish up in the time I have left.

I have no items left on my mental list. I'm ready. I'm tired of thinking about the freedom I'm about to lose. When I wake up after surgery, it won't matter anymore. All that will matter is recovery. And that's long and hard, but I did it once, and I can do it again. I want two good hips.

My hospital bag is packed. I don't remember what I brought last year, but this year:

baby wipes (they help me feel cleaner)
kleenex pocket pack (hospital tissue is rough)
lip balm
ponytail holders
elastic headband
hairbrush
face moisturizer
antibacterial hand wipes
hand lotion (the wipes dry out my hands)
ear plugs (hospitals can be loud)
sleep mask (people walk in and turn on the lights)
deodorant
toothbrush
emery boards
iPod
cell phone
chargers for both of above
fleece throw blanket (soft, warm, something from home)

I'm lucky that we live so close to the hospital. After four or five days, depending on how I'm doing, physical therapy will have me climb stairs with crutches. Seatmate will bring in loose shorts and a t-shirt for that.

Then, around six or seven days, provided I have no complications, I'll be discharged and come home to my own bed and no one waking me for vitals every four hours. I'm already looking forward to that.

By this time tomorrow, I should be somewhere between recovery and my room on the orthopedic unit. I'll be awake to see the first few innings of the Red Sox game tomorrow night. I love watching Josh Beckett pitch.

Here we go.

When I came around the corner the other night, the cat was lying across the hallway, blocking it. I stopped to pet her, then stepped over her and went on. When I returned, I stopped to pet the cat again, then stepped over her, watching to be sure I didn't step on a moving paw.

I'm noticing all these little things lately as I get ready for surgery again. It's been almost a year since the surgery on my right hip, and I have clawed my way back to the most normal things, like stepping over a cat, or carrying a plant to the sink, or walking to the subway. I couldn't do any of those for so long, and my taste of ability rather than disability has been so short. But I'm only halfway done.

It's incredible how much stronger I am with one bad hip instead of two. I've been walking a lot, for me, and savoring my freedom. I went to DC for a few days recently and walked through the airports for the first time since surgery. It was awesome not to be in a wheelchair on someone else's timetable, unable to stop anywhere but security and the gate. Such a simple pleasure.

I'm scheduled for surgery on my left hip on August 24. I've had my final MRI. I'm waiting to make my autologous blood donation. I have two unread books stashed away and another en route from Amazon Marketplace. I have so much to do.

Last year at this time, I was terrified. Now I'm mostly calm and resigned. Mostly. The anxiety is like something simmering quietly on a back burner; every now and then, it bubbles up and I have to pay attention to it. I think that's just biology at work. My brain is getting ready to fight, but there's nothing to fight yet, so it just makes me anxious.

My brain is also still thinking about ordinary-life things like pretty lipstick, even though I won't need lipstick for a while. Sometimes I forget that my pelvis has a date with a bone saw later this month.

I should do some organizing, but I'd really like a nap.