best laid plans

Elizabeth
January 14, 1966 - June 28, 2002
My sister died fifteen years ago today (?).

I used to struggle with the timeline on the first few anniversaries. I would watch the clock through the day, estimating where she would have been and whether I could still intervene. Of course I couldn't intervene -- it was over and she was gone -- but some part of me felt as though I could, and it was very hard to convince otherwise. I would get increasingly anxious as the day went on, frantic between 4 - 7pm (roughly the time between when she took her life and when I found out she was gone), then sunk with grief for the rest of the evening.

It was a physical thing, the anniversary reaction. I couldn't reason myself out of it. Only time has helped. I don't get as anxious now, but I still notice the time and think about where she would have been. (At this time, she was still alive and trying to save her own life.)

Time heals. I'm more at peace with the hole in my life now. I grumble at her sometimes for leaving me, but I have no real anger toward her. She did the best she could for as long as she could. That's all we can ask of each other.

I hope you're at peace, Lizie. We love you and miss you and remember you.

Elizabeth
January 14, 1966 - June 28, 2002
My sister died thirteen years ago today (?).

Someone asked me recently whether I have any siblings. That question never gets easier. I can't say no, because I had a sister for 32 years of my life. Technically, she's still my sister; her lack of availability doesn't change that. But if I say yes, I drop a bomb on someone who asked an innocent and usually harmless question. How do I answer that question with consideration for both the asker and the askee? I wonder every time.

She was sick for a long time, I said gently. Thanks. Do you have any siblings?

We love you, Liz. We miss you. We remember you. We honor you.

Elizabeth
January 14, 1966 - June 28, 2002
My sister would be 48 years old today. (?) Happy birthday, Lizie. We miss you.

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.

for ravengirl
I'll be back soon.

I have been back in Boston for a week.

My father must have been kicking some bacterial ass, because after twelve days of IV antibiotics, tests showed conclusively that he was winning. The home care nurse came stopped by that evening and took out his PICC line, which is like a long-term IV. The living room was cleaned of its medical workstation and returned to its rightful status. Dad started braving the basement stairs to do laundry (of course I would have; he didn't tell me) and found my missing sock. And I started thinking it was time to go home.

I kept feeling that way. My parents were doing fine. Something in me was out of gas. I took a shuttle home last Saturday and was sick and coughing twelve hours later.

It's just a cold, but I'm grateful that I didn't get either of my parents sick. I'm still taking cough medicine.

More recent tests show that my father is continuing to kick the crap out of whatever was trying to kill him. He keeps getting stronger, through probably not fast enough for him. I finally had time for a haircut and am slowly starting to work on the mail piles and paperwork around the apartment. I've gotten on the stationary bike a few times, gently, and my hip seems to be tolerant, if not enthusiastic.

Being in DC was like boot camp for my hip. I hadn't walked so much since before surgery. I certainly hadn't climbed stairs every day. By the time I left, I could climb them one after the other instead of right leg, stop, right leg, stop.

It's a huge mental boost to be so much stronger. I can't imagine my surgeon won't clear me for physical therapy now. I still have to get the screws taken out (outpatient procedure, several weeks of mild soreness in the hip bone) and the psoas tendon issue will probably limit me in little ways for another couple of months, but I feel like I can see the road stretching ahead of me for the first time since I decided I had to see a doctor four years ago.

What a long, strange trip it's been.

So... I got depressed and the words turned off for a while.

I'm feeling better, but I'm still blue. My left hip has run into a complication and my recovery has stalled. I got *thisclose* to being able to walk out of my home on my own, and now I'm waiting again.

I discovered the problem right after I was cleared for full weight bearing at thirteen weeks post-op, which was in early December. My surgeon studied my x-rays and watched me walk a bit without crutches and told me I had no movement restrictions. "Don't do anything crazy," he said sternly, and I threw my arms around him.

A few days later, I did two minutes of tendus (a basic ballet exercise, sans turnout and pointe shoes) with my kitchen counter as a barre. I'd used tendus to strengthen the right hip last year. Something in my hip made a loud snapping sound, audible to anyone near me. Then it started to hurt, and then it swelled up impressively, pushing my femur outward to make room. Whoa.

I told my surgeon. He knew exactly what it was -- my psoas tendon -- and restricted me from physical therapy until further notice.

Here's the deal. There's a big muscle in the hip called the psoas. The tendon that attaches it stretches over a pelvic bone called the superior pubic ramus. When you move your hip, the tendon slides back and forth along that bone.

One of the bones cut in a PAO is the superior pubic ramus. The bone is healed enough for me to use it, but not healed enough to be normal. The tendon bumps up against the rough patch where the bone was broken and gets all upset. No walking for YOU!

The psoas tendon complication is apparently reasonably common. As the bone finishes healing over the next year or so, it will smooth out and stop bothering the tendon. I don't know how long it will take. It could be a year. It's not up to me.

This is where I got depressed.

I know I'm lucky. I avoided worse complications and my recoveries have been relatively smooth. All of my plans are still viable. I'm just not on the schedule I expected. As REO Speedwagon said, roll with the changes.

(Yeah, I know. I'd forgotten that song too. Then it popped up on a documentary TV show and it's been stuck in my head. I don't love it, but it's good advice.)

And at some glorious point in the undetermined future, I will be able to go back to physical therapy and work my ass off. Then I'll be able to walk back to the T (Boston subway) and ride home like a normal person. This isn't forever. It just feels like it.

I do hope I never forget how hard it is to be disabled, and that I find a way to advocate for those who will never get out of their wheelchairs. I haven't figured out the best way to do that, but a year and a half in a wheelchair has changed me, and my respect for people who live this way every day is crazy huge.

Okay, enough earnestness. Today's excitement: UPS is bringing me Burberry's Pale Barley eyeshadow and Rosewood lip gloss. I still want the Rosewood lipstick, but I put it off for next time. I should probably explain my love for high-end makeup, but that's another post.

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 34.

I took my last clot shot this morning. No more waking up to inject myself; now I'll just take low-dose aspirin daily for three months. Hooray, progress.

But not before I had a funny interaction with the pharmacy. Seatmate picked up a prescription for me, something I've taken before, and it came home with a new sticker on the bottle: DO NOT USE THIS DRUG WHILE BREASTFEEDING.

I am not breastfeeding. I am not a mother. I have been awfully careful over the years to make sure I don't become a mother. I have nothing against kids; I just don't want any of my own. So we were puzzled and amused by the sticker.

Later, I did a Google search for Lovenox, the anti-clot drug I've been taking, hoping for tips to prevent bruising at the injection site (black and blue and purple and yellow). The answers came not from orthopedic surgery forums, but from forums for women who were trying to conceive.

Someone at the pharmacy thinks I'm trying to have a baby.