best laid plans

For the longest time, I didn't post because I didn't have anything to say. My hip was unchanged. My life was stuck. I didn't want to hear myself whine.

For the past month, I haven't posted because I've been busy: my father got very sick in the span of ten days. He landed in intensive care and I took the next plane to DC. He was in the hospital for three weeks, during which time my mother and I were either at the hospital or sleeping, and sometimes both.

Now he's home and getting antibiotics three times a day through an IV. We take very short walks in the early spring sunshine. We talk about skiing dreams and the evils of condo developers and whether the Rolling Stones' "Satisfaction" has a more iconic opening guitar lick than "Gimme Shelter." He is slowly, slowly getting better.

I haven't really processed that I nearly lost him.

But I didn't.

I should be asleep.

I fell asleep earlier today, in the middle of the Sox game. I don't think I made it to the fifth inning. Remember what I said recently? NO NAPS. Yeah. So here I am.

I'm sitting at my desk. I'm thinking about the fact that I rolled out of bed, picked up my computer, and came down here on my own two legs. In two weeks, I won't be able to do any of that.

I'm scared. I'm afraid to be so disabled, so dependent, so vulnerable. And for so long. PAO is a long recovery, especially for patients at the upper end of the age spectrum, like me. I've never had surgery. I don't know how well I heal from anything big. I get to learn with a broken pelvis and a 6-8 inch incision.

Physical therapy at Children's understood. "We have twelve-year-olds who want to be off their crutches at three weeks. Then we have the most fit, healthy forty-year-olds who are on them for three months." I am not the most fit, healthy forty-year-old. Anything shorter than three months of two crutches will be gravy, I said.

But I won't mostly be on them. The physical therapist at Children's wanted me to understand that I will spend most of my recovery in a wheelchair to spare my hands and wrists. I'm fine with this, except that my old Boston building has steps in the foyer. The steps are too high for a portable wheelchair ramp. Seatmate can carry the chair, but I have to get myself up and down the stairs.

I try to remember that people do far more with far less every day. And that the waiting is the hardest part.

Since the last time I wrote, I turned forty. I don't know how that happened, exactly. I was thirty just last week.

But I'm cool with it, so far. I wasn't particularly concerned before it happened, and now that it has, I'm failing to get upset about it. Maybe it'll be fun.

I think the main reason my age isn't bothering me is that something else really is: for the first time in my life, I need surgery. I have hip dysplasia, which means that my hip sockets are shallow and misshapen. I've been trying to ignore it since I was diagnosed in 2008. The pain has finally crossed the line from only-when-I-move to keeping-me-awake. The pain is a variable in everything I do, and it's squeezing the life out of my life. And if I don't get my hips repaired, they will become too painful to use at all within a few years.


Above, a healthy hip at left, my own hip at right. The hip socket should provide a solid horizontal shelf for the ball at the top of the thigh bone, which supports the weight of the body. Instead, the ball slides around as I move, wearing down the cartilage inside the socket and damaging the tissues surrounding the joint. My right hip is also dysplastic.

The surgery is called periacetabular osteotomy, and it's huge. It involves cutting the hip socket off the pelvis, rotating it to create a deeper socket, and screwing it into place. 3 surgically broken pelvic bones. 6-7 days in the hospital. 8-12 weeks on crutches and in wheelchair with no weight bearing on the repaired hip. It's a very long recovery. Then you do it all over again with the other hip.

Why do something this extreme when I could get hip replacements? Yeah, I asked that too. The main reason is that I'm only forty. I expect to need my hips for a long time, and hip replacements wear out. Patients need new ones after ten or fifteen years at the outside. My malformed hips could stop supporting replacements eventually. I could outlive my hip joints. I could stop being able to walk.

It's really important to me that I can walk. I can't ski or ride horses or play tennis anymore, but I can walk. That's my motivation.

Because the surgery alone isn't complicated enough, we also have to deal with Ehlers-Danlos Syndrome (EDS), my connective tissue disorder. The tissues that hold my body together are weak and stretchy. My reconstructed hip will be held in place by the same faulty stuff. EDS can cause other complications as well, from difficulty with IV lines to slower healing to post-op dislocation. In spite of this, my EDS doc, my surgeon, and my physical therapist think I'll benefit from the procedure. We'll probably meet with another EDS specialist to make sure we're not missing anything.

So yeah, this is a big deal. Turning forty is nothing compared with having my pelvis broken in three places. I don't have a date yet for surgery, but the clock is ticking; if I lose too much cartilage, I can't do it.

I'm lucky: I have awesome doctors, a great physical therapist, a loving family, a devoted boyfriend, and caring friends. I have a journal where I've documented my life for nine and a half years. People do far more with far less all the time.

A great man once sang, "I will get by; I will survive." And somehow, I will.

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Backstory: I was diagnosed with Ehlers-Danlos Syndrome (a hereditary connective tissue disorder) in August 2007. The doctor who diagnosed me was the first doctor I'd met who'd seen patients like me before. The diagnosis led directly to better medical care, so I'm really fond of this doctor and the people who work with him.

I went back to see Dr. Murray last week. I didn't go to the little office in genetics this time; Dr. Murray has somehow finagled time and space in the gorgeous new Shapiro Cardiovascular Center across the street from the main building. Heart problems are common among EDS patients but mine is fine, and someone confirmed it with a quick EKG when I arrived.

Dr. Murray is still working with the genetic counselor I liked from our first meeting, and I was surprised at how glad I was to see them. It was like being overseas and meeting up with someone who speaks English. They understand me.

We talked mainly about my hips. They hurt much more than they did the last time we met. I have acetabular dysplasia, meaning shallow hip sockets (more on that). Back in December, I met with a doctor who does reconstructive surgery on dysplastic hips. The surgery is enormous, but it would potentially allow me to keep my own hips for twenty more years instead of needing hip replacements in five.

The problem is that any surgically altered hip is held in place by the same faulty tissue. The doctor doesn't know whether the surgery will relieve the pain. He thinks it's possible that the repaired hip(s) will dislocate. When the most confident guy in the building doesn't know what to do, what do you do?

Dr. Murray agreed that the best answer will come from getting everyone together: hip doc, EDS doc, pain doc, physical therapist(s). From consensus will come decision, or so we hope.

I'm terrified of surgery and still in denial. I do have some awesome people in my corner, though.

I also have amoxicillin three times a day to kill the sinus infection and tickets to the Bruins game tomorrow night. Life is good.

Somehow my immunity to ordinary bugs has dropped to nothing. I have yet another standard-issue cold and fever. My father said I should have gotten a flu shot. I said I haven't had the flu. When they come out with a cold shot, I'm there.

As usual, I'm pretty sure I got sick at last week's Bruins game. (Which they lost. To Minnesota.) I plan to give it back tomorrow night. I probably shouldn't go, but the Habs are in town. I'd say that's like skipping a Sox-Yankees game, but the Yankees haven't been that important in years.

I've been spending sick-time with Benita Larsson, who seems to be a Swedish Martha Stewart. I'm in love with her little white house, especially her perfect white kitchen. I'm so inspired.

Unfortunately, I have to get the bathroom scraped and repainted before I can play with the kitchen. I have no exhaust fan and am not sure whether one can be installed in a building with solid masonry walls. Consequently, the paint gets wet with steam when I take a shower, and is now peeling away from the plaster in big leafy pieces. I am not amused.

More Advil. More Mucinex. More sleep.

They're walking in Memphis today, and I'm lying in bed with the cat, all of us united under the same steady gray rain.

My father is covering the event for Big Network radio, as usual. My mother and I sang some of Marc Cohn's "Walking in Memphis" on the phone this morning; Seatmate went for U2's "Pride (In the Name of Love)" instead. "Pride" is a bit more culturally appropriate ("Sunday morning, April fourth, shot rings out in the Memphis sky..."), but "Walking" is catchier.

On Saturday night, I ate something I shouldn't have eaten. On Monday, I went, inevitably, to the hospital for my date with an IV. For a change, I tried a different hospital, the way one might sample local cuisine. Seatmate came along for support (his karma banks are overflowing), and I fell asleep on him during the five-hour wait to see a doctor. Don't get sick on a Monday. Monday is the busiest day of the week in an emergency room.

By the time they found a bed for me, I was in so much pain that I couldn't shut up. I groaned my way through various additions to my IV until they gave me a cocktail of Dilaudid and morphine. That turned off the pain like a faucet and made me an instant happy drunk. I was actually leaning on Seatmate and telling him, "I love you, man." (Which I do, and he knows, but is not the point.) Much better.

Then the hospital discharged me. They sent me home too early; I was still woozy and dehydrated. My blood pressure at discharge was 95/60. The attending gave me prescriptions for an anti-nausea agent and a strong painkiller, which should have been a warning. But off I went, collapsing gratefully into my own bed.

Fast-forward through a few days and nights of being pathetically sick and here I am. I have enough strength to write in my blog but not to go to the market. I haven't been able to watch hockey or baseball because the moving image makes me nauseated. I can't concentrate to read for very long. I'm somewhere beyond bored. But I think I'm improving.

Sometime early this week, Cricket's vet called. The news is good: Cricket's kidneys are functioning as well as they did last year, which means that she can take medicine. We're going to meet with a veterinary cardiologist and try to do an echocardiogram. Cricket's extreme behavior toward vets might make this impossible, but we'll give it a try.

Considering the relative health of her kidneys and the way she has bounced back from each recent event, the prognosis for the cat has become much brighter. I'm so relieved.

And in other news, I turned 38 yesterday. Seatmate came over with presents (among them Glenn Gould's 1955 Goldberg Variations). We agreed to do a Swerve's Birthday Observed when I'm better.

I'm getting there.

The radiator in my bedroom started leaking last night. The gurgling sound caught my attention, and when I investigated, I found a leak spraying hot water into the air like a tiny fountain. I wrapped it securely in duct tape, which redirected the water straight down. As my knowledge of radiators stops there, I stuck a mixing bowl under the leak and cleaned up the puddle on the floor. Happy New Year to me.

Looking back over 2007, a few milestones and markers stand out:

2007 was the year that Seatmate and I became virtually inseparable. Life is just more fun shared with him. We often say the same thing at the same time, start laughing simultaneously, finish each other's sentences. He took me to my first Opening Day at Fenway Park and stayed overnight at the hospital with me (twice) and helped me pack when I moved. Even my possessive cat likes him.

2007 was the year I bought my first home. I'd been looking for years and I knew it the moment I saw it. It's still sort of bare, and time has shown that I should have chosen a different paint color for the kitchen, but I love my apartment. This year will be about adding details.

2007 was the year I fell in love with sports photography. I'd been idly photographing baseball for a few years, but in 2007, I bought an inexpensive telephoto lens and hauled it around from venue to venue. I shot endlessly and deleted 90% of the results. I studied Kelly's wonderful photos for tips. And I got a few keepers.

2007 was the year I became older than my sister. I suppose I was technically older on the anniversary of her death in 2006, but adding an extra year to my age is harder to ignore.

And 2007 was the year I was diagnosed with Ehlers-Danlos Syndrome. When treating my underactive thyroid failed to return me to health, we started looking for an answer. Over the years, doctors considered chronic fatigue syndrome, fibromyalgia, Lyme disease, Epstein-Barr, rheumatoid arthritis, lupus ("It's never lupus"), and others I've forgotten. I don't blame anyone for missing the diagnosis; Ehlers-Danlos is a rare disorder and many doctors have never seen a case. I'm grateful to the doctors at Brigham and Women's Adult Genetics Clinic for their expertise and support.

One of my first actions in the new year will be to try to sucker my superintendent into fixing the radiator. I gave him a hefty tip at Christmas; I should hit him up while it's fresh in his mind.

Happy New Year, everyone. May 2008 bring you health, happiness, and leak-free pipes.

This week just won't cut me a break.

I woke up sick in the early hours of Monday morning. A day later, I was getting worse: abdominal pain, shaking chills, throwing up pieces of stomach. With Seatmate at my side, I reluctantly went to the hospital.

The emergency department is undergoing some kind of major reconstruction, and they've set up a new system to handle patients for the next six months. Unfortunately, no one actually knows the new system yet. It seems to involve shuffling patients from one waiting room to the next: triage, pre-screening, screening, post-screening, like being passed along an underground railroad. I kept thinking they would skip the treatment and jump right to discharge.

I was eventually put on a gurney in a hallway to get started with medication while waiting for a room in observation. An exhausted nurse gave up after her third attempt to set an IV in my balky veins. Someone else finally succeeded with a pediatric needle. Some things never change.

It was not my first night in observation, where they stash patients stable enough to leave the emergency department and sick enough to stay in the hospital. It's reasonably comfortable compared with emergency bays. Despite periodic chills, I started to feel better.

Then the headache started. I didn't think it was a migraine at first, just a combination of sleep deprivation and low blood sugar. I drank some soup and took Tylenol, but no luck. I took half a Vicodin, which worked briefly and gave me an hour or two of sleep. When an aide came in to wake my roommate, she did it in the most brutal way possible: flipping on the lights and speaking in a piercing voice.

Yeah, I wanted to kill her.

When I got home, I took another Vicodin half and drank more soup. When I woke a few hours later, the headache hadn't budged. And now I can't sleep.

Can I do this week over, please?

A recent doctor's report describes me as "a well-developed, well-nourished talkative white female." Talkative. They must not have seen my journal.

When we last saw our heroine, she had been tossed out of and banned from her gymnastics community, with which she had a relationship of many years. I'm happy to report that that bit of drama ended as abruptly as it began. 24 hours later, I got a conciliatory e-mail from the moderator responsible, a guy I really didn't know. I was welcome back, he said, but he would understand if I chose not to return.

I was madly amused. What, because he called me some names? Please. I sent a reply to that effect and now we get along just fine. Reunited, and it feels so good...

My Undiagnosed Stomach Hell came back for a visit last week. The pain was so bad last Sunday night that they gave me morphine. Morphine. I'd never had it. Unfortunately, the effect didn't last and I was back in the hospital on Wednesday night.

Seatmate stayed by my side the whole time. He's pretty amazing, people. He has a similarly adaptable sense of humor and a great contagious calm. We managed to laugh through most of it, somehow, if only because it's funny to listen to nurses trash-talk their colleagues: "She blew that vein too, huh?" I'm blessed.

We think I have an ulcer. Sometime soon, I'll get a camera dropped down my throat and find out for sure, but it looks likely. I'm also taking about eight pounds of iron per day to deal with chronic iron-deficiency anemia and rebuild the stores of iron I've depleted. Take it from me: don't take too much Advil.

And in the middle of it all, as Seatmate and I missed two games at Fenway, the Red Sox won the AL East. That's a beautiful thing.

I am exhausted.

I leave tomorrow for my annual pilgrimage to Florida for Passover. For the first time in many years, Bijoux the Civil Disobedience Dog will not be in attendance, because the parents of said dog now have a baby.

A baby.

If an individual carries her dog with her everywhere in a Louis Vuitton pet carrier, is it vulgar of me to consider what that individual, times two, might spend on a baby? Maybe, but it's fun.

Passover: never a dull moment.

I've spent the week doing last-minute errands and dealing with real estate. I signed the Purchase and Sale agreement yesterday (the "P & S" in real-estate lingo). Now I get to deal with the mortgage company. We're expecting to close at the end of April, at which time I can ramble at length about the new abode. Of course I'm superstitious. I'm a baseball fan.

Behind the browser screen is a to-do list. I've been busting butt on my to-do list this week, but like a hydra, it keeps growing back. It hasn't been all work and no play, though. An example: my iPod chose Wednesday night to die. I've been coveting the tiny iPod shuffle for a while, so I indulged in a little silver one and loaded it with music. My iPod was always on shuffle, anyway.

I also gave myself an hour Wednesday afternoon to skate. I'm breaking in new skates and learning a lot about skates in the process. In short, while the skates fit my feet very well (and many others did not), the boots are cut too low for my damaged ankles and the blades are too long for the way I skate. I've mostly solved the ankle problem by taping my right foot and wearing heavy nylon straps around both skates. It's fairly common for hockey players to tape the tops of their skates, but it's a subject of much debate; my ankles are beyond repair, so the hell with it.

The blades are more complicated. I'll get them adjusted when I return.

I was one of three skaters, total. I spent a while warming up, testing my edges, being careful. Then, eventually, I started skating around the faceoff circle in the center of the rink. I turned around and skated the circle backward. Slowly, I moved into crossovers. It occurred to me that I was absolutely flying. It also occurred to me that I was wearing nothing more protective than jeans. But it was exhilarating, and for a few moments, nothing else existed.

This is why I do sports.

When I settled down, I played with a couple of one-foot turns, then eased myself off the ice. The lobby was full of boys in hockey gear. I'm lousy with ages, but I'd guess nine. They were old enough to play competitive hockey, but young enough that everywhere I looked, parents were easing their kids into shoulder pads and lacing skates. Youth hockey tryouts, I was told. Little hockey players are unbelievably cute when you don't have to manage them.

Anyway. Now I get to pack and find my one-quart Ziploc baggie for airport security. Travel is such fun these days.