my tragic right hip

Busting out bad joints all over the place

July 29th, 2012

Catching Up: Halifax Styles

My RRHB took this picture of our son at Dufferin Grove Park. Yet another example of an amazing place, in downtown Toronto no less, for children. Whatever Doug Hollyday has to say, and it’s idiotic, almost embarrassing to those who voted for a man who can be so obviously obtuse about urban life, we are finding Toronto to be a perfectly wonderful place to raise our son. I wasn’t here, I was at work, but I heard all about it from my husband, and there’s pictorial evidence that my kid’s doing just fine being raised in Little Portugal.

The last few weeks, months, even, have been hectic. The busyness never seems to abate, and now that we’re going to the cottage as much as possible, I know that the summer is going to whiz by. The weather has been amazing and as much as I believe we’re urban people, I do appreciate being by the lake up at the cottage on the weekends–the water, the heat, the BBQ–it’s an amazing place to just be out and enjoying the season.

So, a few things have happened. I got to write this for Today’s Parent, which made my week. I’ve read about 10 books that I haven’t had a chance to blog (I’m going to try to get caught up this week). We’re in Halifax for sales conference; here’s the view from my hotel (I can see the ocean if I lean a certain way; I love being able to see the ocean). Today, today I left my son at home for the very first time and am spending my first night without him.

Without him.

As I was leaving and bringing my suitcase downstairs, he kept saying, “Ethan (his says “Etin”) go on trip.” And my heart just collapsed a little. I wept a little in the cab to the airport. Then I sat on a plane and read, uninterrupted, for almost three hours. I haven’t done that in over two years. I have almost finished a book in one fell swoop–remembering what that was like was pretty amazing. Despite the fact that I had been up since before 5AM (he’s an early riser, that boy), I didn’t sleep on the plane. Reading seemed more important, more precious. But the leaving him. The being away from him, well, it’s hard. I know it’s healthy and good and will all turn out all right, I’m just not entirely prepared for it. Like I was saying to someone today, he’ll only ever be my one child–and I miss enough of his life by working that being away, even though he was a misery guts these last couple days, I’m torn in two in terms of leaving for my work trip.

Anyway, getting caught up–this weekend I managed to clean out my closet. Win! I was packed and ready to go without any stress (we have many hours in the day when said baby gets up at 530AM). I’ve been managing to keep with some small changes–riding my bike, keeping up with that, swimming on the weekends, but the weight is stubborn and not coming off. I still don’t feel like myself. I don’t even feel like a version of myself these days. My health is finally stable so I can at least concentrate on staying well, but I’m exhausted after the battle.

We spent a brilliant week up north after the July long weekend. My RRHB gave me a typewriter for mother’s day (photo to come, naturally) and I was using it up there–so, much, fun. I’ve been working on a essay for a friend’s collection and that’s been an interesting writing experience. A friend has done a substantive edit on my novel (fingers crossed I have a few moments to look at it during the evenings after conference is done). For a long time, I’ve been thinking about giving up my writing life, that it’s just not going to happen for me, and I was coming to terms with it, slowly. Now, I feel maybe that’s hasty. Who knows. I can’t seem to stick to anything these days.

On top of all the other crap that’s happened, and this is a big confession, the cyclo that I had to take last summer has officially put me in early menopause. What an insane ride, surprise! you’re pregnant–the most fertile and, well, “womanly” I have ever felt, and then not even eight months later I’m an old woman, no period, baby playing with my blood pressure cuff and super dumpy from the prednisone. I can take a lot when it comes to my health. I can endure blood tests and more tests and biopsies and bad news and bad luck and more bad luck but for once I would like to be the rule and not the exception. You know?

Today I walked by the ocean. I wonder if people who live in cities and towns by the ocean take it for granted like I take the cottage for granted? It’s beautiful here, absolutely lovely. I’m excited about being a full-on, wickedly goofy tourist.

June 22nd, 2012

What Happened?

Goodness. WHAT HAPPENED? It’s been weeks and I’m no closer to actually blogging all of the things that have been on my mind. So, this is what I’m going to say–I’ve started riding my bike to work and, no word of a lie, I am seriously THIS GUY sometimes:


May 16th, 2012

Wednesday. That’s All.

I always think of that Alanis song, the one about it raining on your wedding day and that being all ironic, even though it’s not ironic at all, when I forget an umbrella and it starts to pour. Yesterday, I cracked myself in the face with the car door after getting home with the RRBB, which has left me with an incredibly sore chin, and I honestly think my co-workers are afraid I might be on the cusp of giving them the plague, I’ve got such a horrible cough.

But, I’m not feeling diseasy. There’s a win!

There’s a red-tailed hawk that flies outside my window at work and, this morning at about 8.20, before the weather turned, before it got all cloudy and gray, it was out hunting pigeons. Swoop swoop, and it’s so cliched, but it’s effortless and floats on the air. Often, I sit just watching it, swoop swoop, and once it flew so close to my window that I saw the yellow of its eyes. I have no idea if it’s the same hawk almost two years later, but this one is just as beautiful. Sure, they’re horribly nicknamed, common “chicken hawks,” but I don’t care–I am excited to see them. They constantly remind me that there is a world well outside of my own where pigeons are eaten and hawks perch on very tall buildings.

I can’t even remember where I read this recently. Might have been a magazine. Might have been online. And it said that people who get out and into nature are happier and more well-adjusted than their city counterparts. Of this, I wholeheartedly disagree–yes, it’s nice to get out of the city, and I’m looking forward to it this long weekend, but it’s also nice to be in your city. Sidewalks aren’t as delicious as sun decks, that’s perhaps true, but just recognizing there is an outside when you spend much of your day rushing from one task to another and trying to cram all of life into the short, twenty-minute bursts of free time really makes you appreciate the blessed flight of that hawk.

I’m rambling today. Like I do.There’s little to add when you’re not being particularly funny. Or witty. Or insightful. Tomorrow’s another blog post. And Thursday. Thursdays are always better than Wednesdays.


But I have decided that I need a holiday. I need a bit of a break. I am this-close to losing my grasp on just about everything. Having a common cold throws me completely out of whack and I’m back this-close

October 30th, 2011

Busted on the Bloor Line: 365 + 8

Where in the world did a year go? It honestly seems to have moved at light speed — the RRBB turned one last Saturday. We celebrated by having a party with our families and a few close friends. Of course, he didn’t know he turned one. He didn’t even know he was the star of the show. He simply took it all in stride as the living room grew more and more crowded, and more babies arrived to play with his toys. We took the idea of no presents very seriously. Our boy has been so lucky to be so loved by everyone in his life from near and far that he’s been incredibly spoiled from the minute he entered the world on October 22 at 3:04 PM. At first my family were a little frustrated and angry with us for asking everyone to refrain from gifts but I think when they saw much stuff was already in my house, they understood. Now all I have to do is convince them to not go crazy for Christmas. I am not sure I will win that battle.

He spent the majority of the weekend miserable and upset. Two days in daycare equals the remaining five getting over whatever sickness has made its way around the room. So, we’ve spent the passed three weekends trying to make him well enough to go to daycare on the Monday & Tuesdays. The weekend of his birthday, the poor fellow caught the same awful tummy bug that felled my RRHB and kept him in bed for almost three days (well, bathroom, then bed, then bathroom, then bed). He had the worst diaper rash I’d ever seen. Hours before his party he had his diaper off, rolling around the kitchen floor, letting, ahem, loose. He was the grumpiest I have ever known him. Yet, the minute people arrived, he was delicious: happy, excited, glad to see everyone in his world that adores him.  (more…)

October 12th, 2011

Busted on the Bloor Line: A Working Mother’s Diary

Today, the RRBB went to daycare for the first time for an entire day. By himself. Without my RRHB as a buffer (he did three transition “days” last week where he left him for a half-hour to get used to the environment). I was crushed. I was immediately struck down with guilt for being excited to go back to work. To be excited to be back at work. And then I had to remind myself that daycare is exceptionally good for the baby. He’s around other kids. He gets to learn in a wonderful environment taught by people who truly enjoy the company of these incredible little critters. But when I picked him up on Monday from his first full day, my heart almost collapsed because he was so upset. His teacher said it’s a fairly typical response: when other parents arrive and a child’s hasn’t arrived, they panic and freak out.

My whole world right now is conflicting emotions. I am elated to have a portion of my life back. The working me loves to be working. I adore using my mind and I have a really interesting job at the moment. Working in publishing has its challenges and rewards, but being on the frontline of the ebook revolution is akin to being on the frontline of the digital revolution when I first started working in websites over a decade ago. I get high from the newness of it all — I like the “wild west” feeling of each day (I know that’s a lame analogy but you know what I mean?).  Yet, I’m completely and totally overwhelmed by how much my job has changed in a year and how much of a learning curve there seems to be. I’m terrified everyone will discover I honestly have no qualifications to do what I’m doing. Well, I have some credentials, a good work ethic among them. And then, I struggle with the emotions I feel on an almost minute-by-minute basis about missing the baby, and not just aching for the physical presence of him, but losing whole days where I used to be in constant contact. I’m not going to lie, every day last week I thought, “Well, now I’ve missed three days of my son’s life.”

Many working mothers I’ve surveyed have felt the same way. The question isn’t whether or not we’ll work. The question is how we’ll cope with the fact that we are working. One friend said that the first week would be horrible and then it would get better. My first day back was actually pretty terrific. That hyper-excited ‘back to school’ feeling permeated the entire day and it whizzed by. People were happy to see me. There’s an ease because, well, after being off for a year, I really didn’t have a lot of work to do. Essentially, it’s not a real work day. It didn’t seem like the transition would be all that hard. Oh, how foolish. Today was pretty rough. I had a late conference call and didn’t get home until after 7 PM. Not only did I miss the baby’s day, but I also missed his bedtime. And bedtime is my favourite time. We cuddle. We read stories. It’s the only time he’s a really cushy baby — for most of the other time he’s romping around like a Sendakian wild thing. And I missed it. All of it. There’s a sadness that creeps in around the time that I’m missing. People keep saying to me that it’s quality time and not quantity but at his age, I’m not sure if he can tell the difference. He needs consistency and calm because he’s a whirligig — he can’t tell that I’m sick or tired or frustrated — he only knows that I’m there to catch him when he turns around after crawling half-way up the stairs and decides he’s had enough.

So, to placate me, I think, my RRHB has agreed to do all kinds of ridiculously fun (IMHO) family-type things that neither of us would have imagined a part of our lives before we had the baby. We’ve been to two farms in three weeks, with petting zoos and tractor rides and bucketloads of kids, and then next weekend we’ll have our very first birthday party. I’m going to bake a cake. I’ve taken a day off of work to bake a cake. I know I’m no Tina Fey but I understand how these two important aspects of your life, your job and your role as mother, can have equal importance. I’m lucky that my workplace is so flexible. I went over to get the RRBB a bit early from daycare because I was worried about him and promptly brought him back to the office. That’s where he had dinner. I feel like it’s acceptable for us moms to do stuff like that — I’ve never seen a working dad bring a baby into the office unless it was accompanied by said baby’s mother. And the whole time we were there, I was telling the RRBB, “here’s where mummy works, here’s the books that she works on, here’s my computer and my window, and make sure you finish this food so you don’t get grumpy on the subway.”

I’m lucky to have a lot of vacation this year, which will help mitigate the guilt I have about only having two full days a week to spend with the baby. I’m already dreaming of taking a great vacation somewhere warm where I can equally introduce him to things that inspire his mummy: the ocean, the sunshine, big, tall trees, cobble-stoned streets and maybe a foreign language. Still, I have a horrible feeling I’m going to be playing catch up with my emotions and my parenting. Consistently trying to make up for the fact that I’m somewhere else for the majority of the day. Consistently trying to give him all of my attention for the few hours I do see him before and after I go to work. Greeting him with a smile and a delicious sense of joy even if he wakes up at 5 AM. Maybe that’s what people are talking about when it comes to quality. Or maybe I just need to take a deep breath and give it a bit more time before making all kinds of crazy pronouncements about my failure as both a mother and a publishing professional. Or, maybe, I just need a good cry.

May 9th, 2011

Monday Disease Blues: A Top 10 List

The RRBB had his six month shots today, and he’s a little crabby, doesn’t feel like eating and his nap schedule’s all mixed up. So, I’m letting him play on his activity mat for a while as I sit here on a pilates ball and try to string some words together. Ups and downs, that’s what the last few days are all about, ups and downs. Far more downs in terms of the disease than ups but what can you do — every day is different. People think I’m joking when the answer to “how are you” these days is always, “well, I’m not dead!” We were at the doctor’s this morning and it’s semi-official — they are probably going to put me on Cyclophosphamide for the Wegener’s, and I have to wean the baby entirely sooner rather than later.

1. Who knew that weaning lead to depression? Like I need something other than the prednisone and postpartum messing with my brain. It’s an unholy trinity — but maybe bits of one will cancel the other one out. My family doctor’s kids are 16 months old (she had twins) and today in the office she told me she still doesn’t feel back to normal, and she’s not even coping with a massive, stinking disease.

2. It’s a beautiful day today and the last thing I want to do is go outside. Thankfully, the PVR is full of Oprah, Friday Night Lights and other sundries for when the RRBB is sleeping. I could read but I am even too exhausted and weepy for that today. I watched the Shania Twain episode while the baby slept a few hours ago — I don’t think I’d ever read her book — but I’m fascinated by the fact that she wanted to lay it all out there, as pathetic and ridiculous as her actions were around the breakdown of her marriage, she simply wrote it all out and published it. Even the terrifically awful letter she wrote begging her ex-husband’s mistress to leave them alone — she published it. Oversharing? Perhaps.

3. As if I needed a reason to feel worse about always wearing pajamas. I read this beautiful post about motherhood on Kerry’s blog, and then clicked over to the article she references about these terrifically hip and hot moms who never wear sweatpants, like, ever. Seriously? It’s a good day if I actually change the sweatpants from the ones that I sleep in to a relatively cleaner pair to walk to the grocery store (and by “sweatpants” I am including their ugly stepchild, the legging, which I swore I would never, ever wear as pants. One should never swear anything about fashion). I would look better if I attempted to wear makeup, dyed my hair and put away the sweatpants but, hell, where would that energy come from?

4. The blues won today. Damn them.

5. CBC Radio played some really beautiful music from the National Parks Project on Sunday. Man, it made me want to take a road trip to every single one. Anything to get out of the city. Anything to get out of my house really. I’d love to take a giant trip this summer with the baby, somewhere foreign and by foreign, I mean Paris, but it’s not practical given our financial situation (read: we are flat-ass broke). I miss travelling. And we’ll have to learn how to do it a whole other way — with RRBB. First up this summer: new passports. It’s the last piece of ID with my maiden name on it. I will be a whole other person once that’s done.

6. Teething + Needles = One Crabby Baby. Sigh.

7. The novel I’m reading for book club reminds me of Before Sunset. Still, I can’t get passed page 15 and started reading Roddy Doyle’s new collection of short stories instead. I’m already halfway through; it’s terrific. God, I love his short sentences.

8. I can’t believe I am this upset about having to wean the baby.

9. The disease is winning. And not in the #winning sense that crazy-ass Charlie Sheen’s barking all around Twitter about. Today, the family doctor actually said, “We need to save your kidneys now.” And I got totally freaked out and almost started bawling in her office, and it wasn’t even an appointment for me — it was supposed to be all about baby. For the very first time in my life, I don’t know if the Wegener’s will win. I’m scared. I am honestly terrified.

10. Feel like the worst friend in the world. I haven’t talked to or seen so many people that I adore, and one of my New Year’s Revolutions was to be a better friend. I’m just not hitting that goal at all and it’s making me feel awful.

Okay, enough self-indulgent, feeling-sorry-for-myself claptrap. I am now going to go and eat some dinner. Perhaps I’m just hangry (hungry + angry = one irrational girl [as coined by Charidy]).

May 8th, 2011

Notes From A House Frau XXI

Nostalgia: Pictures For My Kid

Last night, my RRHB and I went to see The Lowest of the Low play Massey Hall. For a long time, he and that band’s lead singer have been good friends. It’s a pretty amazing thing to see someone you’ve known for twenty years (they were celebrating the 20th anniversary of Shakespeare My Butt) up on stage at one of Toronto’s most prestigious venues. It’s also really cool to see Massey Hall packed with people who have adored that record as a life anthem for as long as its been pressed jumping up and down in their seats, singing along, knowing all the words, and clamoring after the band post-show for autographs etc. It was a delightful evening.

But, as with everything these days, the whole evening just got me thinking about where the heck twenty years disappeared to. The disease had just been diagnosed, and I was out for one of the first times since getting out of the hospital. The same side effects (puffy face, hair loss, pimples, weight gain) on a much younger, non-postpartum body seem almost glorious in retrospect. I was wearing a cute, flowered dress, this I remember. We were upstairs at Sneaky Dees and my RRHB’s first band, Dig Circus, opened up for The Lowest of the Low. The RRHB sang me the dirty bits of “Rosy and Grey.” I danced a lot. We weren’t together but it seems almost prophetic to think back now as to how we were probably always destined to be together anyway. He’s still the very best person I know. He was back then. Brought me a hilarious Pepsi hat when I was in the hospital and hugged me like I was no different. He still holds me like that today. I treasure that, it’s something to cling to during all of this, and how hard it’s been for so long.

Annnywaay, I got stinking drunk. And managed to get stinking drunk for many, many Low shows in the coming years. There was one point when we (my dearest Hannah) saw them play in Kingston, and then drove all the way to Banff where we were working for the summer, only to see them there as well. Knowing the band, because so many of my friends from high school were in Dig Circus, was a highlight of my young life — it felt so cool to go to the club and talk to the band. I had grown up with obsessive love for so many bands, a lot of it I outgrew (goodness, I listened to so much U2 in high school and then never again), but it also set the tone for so much of my life. I love live music, prefer it in dingy clubs before the bands are big enough to hit Massey Hall where you can get right up close to the front of the stage and go deaf listening to the up and down and back and forth of it all. And I’ve seen so many life-changing rock shows with my RRHB and they always make me nostalgic. Not like the nostalgia of last night, of a misspent youth, of the hundreds of hours I’ve spent drinking beer and jumping up and down, of thinking about all of the things that have passed since the very first time I’d seen the Low until now, but of how rich my life is because music, good music, has always been in it.

Before the show, the RRBB and I danced around the kitchen to “Come on Eileen”, a favourite song that just happened to be on the radio. A few weeks ago we went to see The Pixies (also at Massey Hall; they played another anthem album, Doolittle), and a couple weeks before that we went to see the Elephant 6 Collective (although another throw-back to the 90s, I had only started listening to these bands in the last couple years). I’m lucky to know some of the musicians whose words and sounds have made such an impact on my life. I feel words deeply. They are more than letters strung together. They are always pregnant with meaning and precious with pause — they keep me whole and make me who I am. Without them, without being constantly amazed by how other people use them, I would be lost. Without my own words, I would have drifted off into the abyss of the disease, of the general overwhelming tragedy of my life, years and years ago. And then to know the incredible human beings behind the words, the melody, the tunes that are as familiar to me as the smell of the city after a delicious rainfall, well, I’m lucky.

In a way, I want our RRBB to know his parents outside of this role we have fallen into simply because of his creation. When we first announced his impending arrival, thus dubbed “fig” for the duration of his incubation, our families and friends were really excited for us. The baby became the centre of our universe. It’s all anyone talked about, and now that he’s here, he’s the star of the show, and rightfully so. He’s a gregarious, delicious little creature who brings the joy like nothing I’ve ever had in my life. But we were people before him. In fact, I think we were pretty interesting people. And for him to appreciate how rich he has made our lives, he needs to know how rich our lives were before he was a fig in my belly. Our lives aren’t captured on film, so he’ll rely on photos and stories and seeing the people we’ve known for more than 20 years at birthdays and occasions and dinners and we’ll become the “parents” — it’s generational, and it’s not something that can be changed. I don’t want to be his friend. I am his mother. This is a role I take very seriously, but I do want him to know us as friends in relation to the people we know, to the goodness we’ve put out into the world, to the weight we attach to words in both of our lives. We can play him the songs. Perhaps he’ll fall in love with them too. Perhaps he won’t. Maybe he’ll hate music and want only to play hockey. Maybe he’ll really not like books (argh!) and love video games. Who knows. For now, I’m satisfied to let him in a little bit at time — to dance around the kitchen yelling “Torra loora rye aye” and hoping he feels the joy I feel when I hear that song.

It’s Mother’s Day. We are not celebratory people, in a sense, no, that doesn’t describe it. Celebrating life on specific, somewhat made up holidays (Valentine’s Day, etc) has never really been my/our thing. I mean, I know I’ve told this story before, but neither of us can ever remember our wedding day — RRHB because he wasn’t convinced about getting married in the first place and me because I was always convinced I just wanted to be married and couldn’t give a whip about a wedding. People look at me strange when I say I honestly have no idea when my anniversary is, but I’m more interested in being with my RRHB on a daily basis, on celebrating my marriage in my own way, than I am about making a big deal about anniversaries, holidays, etc. We love our families. We love our family. We love each other. We love him. I’ve survived another day with the disease and, in ways, I think nostalgia truly takes up enough space in my life in so many good ways that I don’t need to save it all up for one day. When my RRHB kept asking me what I wanted to do for Mother’s Day, I didn’t have an answer. And then, I’m glad I didn’t. Because today was perfect and perfectly us. We got up, had pancakes, took the baby for a wonderful walk by the lake, and spent an afternoon talking nostalgia about the last twenty years. And, for the first time in a long, long time, my eyes are wet and dripping with tears that feel like little blessings and not the unbearable weight of the disease.

May 2nd, 2011

The Prednisone Crazies: A Top 10 List

Throughout the history of my having Wegener‘s, I’ve been taking prednisone off and on for about 20 years. Not consistently, but always as the disease flares, gently in some cases, and more aggressively (like now) in others. My system seems to be sensitive to the drug, to all drugs actually, which means that I tend to experience the side effects deeply. It’s how I ended up with my tragic hip — Avascular Necrosis brought on by massive doses of prednisone when the disease was first diagnosed and the doctors were aggressively treating the disease to save my kidneys, and to stop my lungs from bleeding (which is what happened at Week 32 of my pregnancy as well). The most intense side effect I feel from the drug would have to be the psychosis. More often than not, it sends me reeling into a pit of depression and this always seems to last so much longer than the active symptoms of the disease. It’s a hard way to live. All of the underlying issues with having a long-term disease, of battling for your health on a daily basis, of coping with the absolute fact that you can’t control what’s happening, of never knowing and/or feeling 100% yourself for months, even years at a time, are exhausting. So, after much thought, I’m trying to be more positive and reconnect with all of the things in my life that make me, well, me, so I don’t go completely off the rails this time with the meds. Usually, it’s thinks like routine and work that keep me grounded, but as I’m on mat leave, it’s harder to cling to the old ways of coping.

1. Get Outside
The weather truly sucks my ass. I mean, it’s raining ALL the time, and it’s oppressive. But, I find even if I take a short walk, mainly with the RRBB, I feel better. I also managed to get an hour’s worth of gardening done this week (that’s my wild arugula coming up) while my RRHB took the baby for a walk.

2. Read
Yes, I know I do this anyway, but the more I read, the more I feel like I’m moving forward in my life. perhaps that doesn’t make much sense but it helps ground my brain in more than the frenetic panic that the prednisone causes — it stops me from collapsing entirely into the cloud-like depression that hangs overhead. It’s a cliched, but apt, metaphor for how the drugs envelop your brain. Reading gives my imagination a chance to battle it back.

3. Write
This is self-explanatory. Last night the RRBB went to bed at 645. If we keep this up, I can actually take an hour or two right after he goes down and after scarfing down some dinner to string some of my own non-blog words together. It’s energy I don’t have but that I can’t afford to waste either watching the last 16 or so episodes of Oprah, which is what I have been doing.

4. Ask for Help
I’m terrible at this — but the best and only way of coping with the psychosis, for me anyway, is talk therapy. I’ve tried drugs and I don’t like to take them. And the fact that I’ve been sleepless for so long isn’t helping the weeping, and if I can at least try and express some of the hopelessness I feel in a safe environment, it means that the “crazies” (and how they manifest in my brain) won’t necessarily overwhelm me to the point where I’m scrubbing bathrooms with a toothbrush and bleach at 3AM.

5. Restorative Yoga
Goodness, I wish we weren’t so bloody broke. But I know now is not the time to be taking private restorative yoga classes. However, I can’t say enough how awesome and healing my practice is in terms of both the disease and what it does to my brain. Right now, we’re doing a bit of Mom and Baby yoga on Thursdays at Liberty Movement Studio, and that’ll have to do.

6. Letting The OCD In One List At A Time
One of the ways that the prednisone manifests itself is through OCD tendencies. I make endless lists, spend hours running through figures, worry about dirt, and organize and re-organize things like shelves, books, closets. In a way, I think it’s a way for my mind to cope with the overwhelming sense that I have utterly no control over what’s happening in my body. The more I feel like I have control, the calmer I am, even if there’s little to nothing that I can do about rising creatinine levels or coughing up crap — I have to leave that up to the doctors and the medication — I can try and staunch the rapidly increasing panic that sits in the middle of my chest with an active To Do List and more organization.

7. Trying Not To Be So Hard On Myself
I look terrible. I feel terrible. I don’t feel like myself. I don’t look like myself. I could spend hours creating negative downward spirals of self-defeatist thinking, abandoning all rational thought, starting silly fights with my spouse about feeling all of the above, and then, I have to stop. Because you know what a great cure for the above is — the RRBB. His silly grin and absolute joy in my company, regardless of how hard it is to find the energy to take care of him, means I’m smiling for most of the day. Everyone looks better when they are smiling, even if their cheeks are ridiculously puffy and outlandish from the disease. Hey, here’s a silver lining — usually the “moon face” is accompanied by acne, but I’m guessing post-natal hormones have kept that in check because my skin is actually quite clear. This also means not feeling bad about watching too much television or all of the other goals on my usual New Year’s Revolutions list.

8. Don’t Listen to the Voices in My Head
The worst of the prednisone crazies, the voices that suddenly come upon the scene and tell me to do horrible things like drive my car into oncoming traffic and/or jump off a high rise, haven’t started yet. This is something I’m incredibly thankful for. The pressure of what goes on in my brain is so intense that years ago I started doing something odd — climbing in my closet and closing the door. And when I feel most overwhelmed, when there’s nothing but mud and anger between my ears, all I want to do is climb back into the closet. A long time ago, I filled them up with stuff so that it wasn’t a possibility. I thought it was the most rational thing to do at the time, but now I can calm myself down by thinking that I’d like to get in, but not actually crawling into the cupboard and closing the door. Even small steps are victories. Right?

9. Weep
Better out than in.

10. Know That I Will Get Better
This one is the hardest. Living with a long-term disease is like an endurance run — it’s a permanent change to your life, it forces you in directions you would never go, and forces you to contend with your mortality more often than not. Positive thinking, that’s what so many people tell me — my yoga teacher, in the form of a mantra; my family, in the form of how much love and good energy they have towards me; my friends, in the form of their never-ending support. Now I need to translate all of that into my own mind and know that I will get better, even if it takes months, years, this time around, I have so much more life ahead of me, I just wish I could live it. You know?

April 19th, 2011

Notes From A House Frau IXX

All The Boys In The House

We baby sat my two nephews the other weekend — two six-month-old babies (see left) and one five-year-old. And it was chaos. My RRHB had The Nephew outside to do some yard work while I took care of the two wee babes. For a while, it was Keystone Cops: put one baby down, the other would cry; pick him up, then the first baby would cry. Wash. Rinse. Repeat for about 25 minutes. Then I got wise to their mojo and just walked around the house with a baby in each arm. Every now and again the cousins would reach over and hold one another’s hands. Babble a little bit. There was a point they were both in the crib and I heard SBC (Sweet Baby Cousin) screaming — RRBB had turned himself right around and was hoofing him in the head. Hilarious. Then it came time to put them all down: RRBB down first, nurse him while reading The Nephew some stories. RRHB rocking SBC as I put The Nephew to bed. I take SBC and continue to rock him to sleep. The whole production took hours. Seriously, how do people do it? It’s an art form, that’s for sure. But it was also completely fun.

The lessons I learned? Even though it was hard to have more than one baby at one time, and that my body can not remotely sustain another pregnancy, but if I was 10 years younger and 100 times healthier, I’d think I’d have bucketloads more kids. It’s just so fun. And that’s not to say that my RRHB and didn’t have a rich and fulfilling life before RRBB. We did. We travelled and made music and wrote unpublished novels and have wonderful friends and lovely families and loads of nieces and nephews and were considering moving to the UK (just because neither of us have lived anywhere else). But I’d always wanted to have children, and I am so glad that we did — I’m exhausted, still dealing with a disease that doesn’t seem to be quieting down, bored most days with being at home, but feeling enriched emotionally in ways that I find hard to describe. There’s an element of patience and kindness in my life that was absent before. I had a terrible temper growing up, and well into adulthood. Apartments with holes in the walls where I kicked them once I realized I’d lost my Metropass or was late because I couldn’t find my keys — all kinds of trivial things that didn’t remotely deserve the emotional response I gave them.

It’s so interesting. Humans have emotions to burn. Piles of pent up anger, rage, discomfort, and some of it’s absolutely debilitating. When you add tragedy to the mix, things intensify. There’s no where for the energy to go — and if you don’t find active, positive ways to disperse it, I think that’s when your brain just goes into overdrive. At least, that’s the way it is for me. When I was younger, I held it all in, the pain of losing my mother, the frustration of constantly dealing with a life-threatening disease, a string of ridiculously bad, terrifically awful relationships — constantly putting pressure on my brittle heart to take more and more. Gaining perspective isn’t easy. For me it took one major prednisone-induced breakdown in my 20s. I’m not sure how much I’ve talked about it — I couldn’t leave the house, was cleaning with bleach at 3 AM, never ate, and was listening to voices in my head telling me to jump off of buildings. Oh, and did I mention I was trying to finish my MA? It was the most difficult emotional time of my life — I didn’t have any coping mechanisms. And once the psychosis hit its peak (the voices), that’s when my kidney doctor at the time sent me to a shrink. I credit him with saving my mind and the “prednisone crazies” as I like to call them have never been so bad since. I have tools now of dealing with them — of knowing what it is and the right way to approach the overwhelming emotions.

I needed coping skills this week. My creatinine spiked to 180 (keep in mind normal is 70, and my “normal” is in the 120s) — the higher that number the less your kidney is functioning. And I was having all kinds of other advanced disease symptoms, terrible joint pain, awful ringing in my ears and ridiculously painful sinuses. I KNEW that because we had dropped the prednisone that it wasn’t simply strong enough to contain the Wegener’s. I cried, a lot. With the exception of when they diagnosed the disease, I’ve never had test results that high, and I’m living with the palpable fear that they’re not going to be able to control the disease. That my kidneys will go and that’ll be that — positive thinking aside, patience aside, I needed an outlet for all the excess emotions raging through my system. The calmer I am, the better it is — and thankfully, we got tickets to see The Pixies at Massey Hall (awesome seats, row L!). That one show, they played B sides and Doolittle only, reminded me not only of who I am but where I came from — we’ve listened to that record relentlessly. It’s one where I know all the words and all the songs and can place myself in different parts of my life through the music.

These days, because it’s such a fun stage — the six-month marker, I’ve been craving the baby. Not like I crave Cadbury’s Easter Eggs but more like something pulling at my heart. I don’t want to trivialize the relationship or state the obvious, write in cliches (every mother loves their child to abandon blah de freaking blah), but when he’s sleeping I wish he was awake. When he’s awake, I know he should be sleeping more. On days like today, he’s perfectly angelic. Not fussy, eats just about everything in front of him (with the exception of some fruits that he’s not crazy about just yet), smiles, sleeps, and cuddles with an intensity that I find hard to replicate. Days like yesterday, well, he’s teething, so grumpy and couldn’t stand not being held, which makes the hours slow and the time creep. I wouldn’t trade it for the world — either RRBB. I know I’m struggling. I know I’m not getting enough rest. I know I need to stop nursing. I know that the disease is winning these days but I find the joy in the everyday so much more than I ever used to.

We went for a beautiful long walk today along the railpath. There were tonnes of birds: mockingbirds, juncos, red-winged blackbirds, and a giant Canada goose. My friend Kath came with us, and she was walking her gorgeous dog, Mannix. The air’s cool but fresh. The city is quiet because it’s a holiday. And even though I want so much, for it to be warm, for me to lose the baby weight, to not feel the pressure of the disease, I also want to be patient with myself. We aren’t having any more kids. I need to not race through this like everything else I do in life, just to get to the end, and then move on to the next thing. Yet, I’m loving every part of his growing up — I mean, right now the RRHB’s playing the piano and the baby seems to be singing along. It’s so cute it makes you want to eat his toes. He’s kind of screaming like Frank Black at the moment: whaaaaa! Aaaaaa! eeeigh!!!

So my life is made up of moments lately. Some good. Some bad. But all connected by this gift of time that I have before me. Six more months and then it’s back to work. Then the baby is no longer a baby but a toddler and if one more person tells me how fast it’s going to go, I might just start weeping in front of them. I don’t want it to go fast. I want it to be the slow food movement of maternity leave. I want it to be all savoury and with rich spices and lots of new and exciting dishes. And when we need it, a frozen pizza or two.

April 5th, 2011

Notes From A House Frau XVIII

At this very moment, my RRBB, after an exhausting few minutes of rolling over, fussing because he can’t get himself back again (like a turtle on its back only in reverse; it’s quite funny), has spent the last fifteen or so minutes looking at himself in the mirror on his activity mat. His concentration skills are hilarious. I’m not sure at all what he sees in the mirror but he’s absolutely enamoured with whatever it is…

Here is our wee boy at five months (five months!) [And this picture is already three weeks old because he’s 26 weeks tomorrow]. He’s starting to have quite the little personality. My temper, my RRHB’s response to anything traumatic (to go to sleep), and a lovely happy smile that belongs to him alone. Everyone keeps telling us that this is the best of the baby stage — when they get to this age, five or six months, but I’m enjoying every baby stage these days, if only because it’s all so new to me, and just so damn fun. That’s not to say that I’m not exhausted, because I am, beyond words, and that I’m not frustrated by how the disease still refuses to calm down, because I am, but I’m trying to be calm and collected, find a quiet routine we can settle into, and make the most of the time that I have before heading up to the cottage for the summer (without plumbing!).

We gave the RRBB some sweet potatoes this afternoon. His very first non-cereal food. He decided about four bites in that enough was enough and he’d really just prefer to breast feed. It’s a slow, patient process, this real-food business. Like anything, I am excited for him and want to record every little thing that happens — but I can’t be sure that when he’s older, he’ll actually want to know.

Over the last few days, I’ve seen many doctors: SFDD, kidney doctor, gastro doc, and had some blood work done today. I’m not going to lie — I’ve been panicking inside a whole lot about the state of my poor kidneys. I have tried to be positive, tried to look at the bright side of it all (that my condition is essentially unchanged since two weeks before having the baby), and yet regardless of all the drugs, of all the “resting,” of all the not working, my creatinine is still sky high as is my blood pressure. In all the years I’ve had the disease, I’ve never had high blood pressure — and I hate taking medicine for things that my body should just do right — and it scares me when I put the cuff on and get a reading like 146/98. We can’t afford any more restorative yoga at the moment, and the money I thought would last us a year barely made it through six months. Such is life, right?

Last time, I promised I would stop complaining about being sick. Or tired. Sick and tired. A lot of residual shock and awe about how everything turned out led me to try and read other birth stories. Helen left a comment letting me know about a collection called Great Expectations: Twenty-Four True Stories About Childbirth edited by Lisa Moore and Dede Crane (#31). And it’s excellent (thank you Toronto Public Library for loaning me a copy). I whipped through it in just a couple of hours (over a few days) and came to the conclusion that not a single birth plan goes according to, well, plan. For something that women have been doing since women were, well, invented, childbirth is as complex and ever-changing as people are themselves. I needed to read this — I needed to know that despite all the best laid plans (birthing tubs, doulas, midwifes, home births, drugs, no drugs) that a women might set out before her due date, chances are something dramatic will change in the minutes when she shouts “it’s time” at her husband and/or significant other. It’s a bright, fascinating collection — not a single one of the writers fall back into cliche to describe their experiences, which I felt was a revelation considering most pop culture birth stories coming to us via television and the movies aren’t remotely realistic. Like firefighters heading into a blaze without their masks, they’re all panting and fake screaming, with babies popping out looking six months old already. But this collection is painstakingly honest, achingly real and just what I needed to read.

Anyway, I don’t have much else to say. I’ve been trying to write this blog post for over a week now and the RRBB hasn’t let me get much done. I’ve got two book reviews to get to and a to-do list that is as long as my arm. So, I will stop rambling, for now.

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about me

Girl with titanium hip will rock. Girl with titanium hip will write. Girl with titanium hip will read. Girl with titanium hip will battle crazy-ass disease called Wegener's Granulomatosis. Now stuff that in your spelling bee!

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