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]).

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.

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?

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.

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.

Notes From A House Frau XVII

It's been a hard week. I had a very disappointing visit with the SFDD last Wednesday morning. My creatinine levels have spiked again for no discernible reason. So, I can't taper the prednisone any further, and I'm back to bi-weekly blood tests, which is tiresome and exhausting, to say the least. And I know I shouldn't complain, that there are far sicker people in the world, people in far worse conditions than I am, but I had trouble seeing beyond my own frustration with fighting an unchanging disease for the last six months. You start to feel as though you are losing the battle that might cost you the war or, in my case, an organ. We are not remotely there yet but I've never been so scared that the disease won't get better, wholly better, than I am these days.

I've cried a lot. I've felt guilty for thinking terrible thoughts -- was this the right decision to move forward, why didn't I speak up when I was feeling so poorly, could I have prevented the episode from becoming so dramatic. Probably not. There was no way to tell and we ended up coming out of it alive and with a beautiful baby that we adore so much it hurts. But that doesn't stop me from being so utterly and completely sick of being sick these days. When the SFDD told me my creatinine had gone way back up, it was everything I could do not to burst into tears in his office. He's calm. I'm a wreck. My stomach is in knots and there's nothing I can do to fight the despair.

My RRHB keeps telling me that things are no different than they were when they let me out of the hospital all those months ago. And he's right. I'm not getting worse. The disease is stable or else they wouldn't let me go home and "stay the course" (SFDD's words; not mine). And taking 15 mgs of prednisone is way better than taking 60 mgs of prednisone. And so, we continue. And continue. Six more weeks until I see him again, six more weeks of being able to breast feed, six more weeks before they talk again about another drug regiment, and six more weeks of trying to think positively, of smiling, of playing, of giggling, of trying to relax and not worry so much about it all.

Way back in the way back, when I was first diagnosed with the disease, I was still a teenager. I had that invincible feeling about it all, there's no way I'd let the disease kill me -- it simply wasn't an option. You just don't realize the severity of it all at that point. I went to university, to grad school, started working, got married, and have had a baby -- all things that weren't necessarily possible the very moment I was diagnosed. That's the trouble with the flares, with the unstable test results, they refuse to be a part of the big picture. They trap you in the downward spiral of letting the disease win -- as if mind over matter actually makes a difference. All these years later, I'm far more temperate in terms of how I think about it all. I know stress and worry makes it worse. I know that being healthy is ever-so important. I know that I am lucky to live in a country where I have access to medical care that has consistently and, almost effortlessly, saved my life on more than one occasion. Still, I'm angry.

So, I'm trying not to let it show. I'm going to bury it for a little while. I'm going to sob, if I have to, and then laugh uncontrollably at some stupid thing that my RRHB says. I'm going to feel sorry for myself and then berate myself for doing so. Then, I might take a walk. I'll string some words together and then take a deep breath. It's funny, we all use war metaphors when "fighting" diseases -- and I can't help but hear echoes of Shakespeare's Henry V, the Kenneth Branagh film, which I haven't seen in years, but that great St. Crispin's Day speech, a sword thrust in the air. Maybe that's what I need: a great big sword to thrust in the air.

Notes From A House Frau XV

We just got back from Restorative Yoga and the RRBB is conked out and successfully transferred to his bassinet. The photo for this post was the how the baby looked before we headed out to an Oscar party. Yes, he was yawning this much even before the show started. We left the house at 5 PM. He lasted approximately 3 hours with a nap in between, and then we came home. I really enjoyed being social for those few hours. I miss being social. Yet another discovery about myself that I've made since spending so much time at home -- I always imagined myself a homebody (I think I've talked about this before) and now that I've got a whole year off, the last place I seem to want to be is tucked away in our beautiful house.

The weather isn't helping. You can walk in the snow -- walking in the rain with a baby just isn't fun, you can't carry an umbrella and push the stroller, the baby is stuck under cover, and it's sort of completely miserable. So, this week was spent feeling a little sad, lonely and isolated. The prednisone getting to my brain in bits, and I actually sobbed one day. Sobbed. It's all to be expected, and it passes. Today (it's Saturday now) we went for a nice long walk, and I feel better. The baby has started teething and in a week or so he gets to start solid food. They grow up so fast, don't they?

Some days, I feel bad that I'm sitting here on the computer while the baby plays, either in his chair or on his activity mat. I know it's good for him, but I feel guilty, feel like I am depriving him of some parental stimulation, already letting him down and he's not even 5 months old yet. And then I feel like I'm a crazy multi-tasker, doing one hit of Where is the Green Sheep or Mr. Clumsy or Lost and Found, then writing a sentence when he's in the chair. Popping my head over the mat and making a funny face while he talks to his baby-friend the octopus or turtle. Then, I write another sentence or two. I read like a maniac while he's breastfeeding, sometimes, I'm concentrating so hard on the book I don't even notice he's fallen back asleep and there goes the sleep training -- I should have popped him back into his bassinet 15 minutes ago.

And then I start thinking that I'm too hard on myself, having too many expectations, and spending far too much time worrying about all the things that went wrong with my own childhood (which is few; we had a very happy childhood). The one thing that I am so concerned about, his sleeping, is primarily because I've been such an awful sleeper my entire life. I remembering being young, under five at least, and my mother sending me off for a nap in the afternoon. We were living with my grandparents then, in High Park, and the house was full of dark wood -- rich, expansive -- and all I did when I closed my eyes was imagine things. My brain wouldn't stop wondering how my body worked, what was the point of being here, where did things go -- strange things for a small child to work out, so philosophical. Ha! But I never slept. And as I got older, it only got worse. When I was in grade school, I started daydreaming in bed when I should have been sleeping, keeping myself awake by imagining I was Wonder Woman or some other crazy fantasy. Again, I never slept. And even older still, in university, taking the meds for the disease for the first time, I think I spent all of my second year of university awake -- a combination of a small bed, a tall boyfriend, and so much stress. Lots going on at home, very little money, lots of schoolwork, and that ruined me for years.

Finally, after much, much work and my own sleep training, years later I started getting some rest. But it took years of reprogramming myself, and still, every few days I'll have a night where sleep just eludes me. I think that's why I imagined the sleepless nights with the RRBB would be no problem, but now, including the many last weeks of pregnancy, I count not sleeping through the night a single time in over eight months. I feel like I'm back in second year university. Going through days in a fog, unable to create full sentences, and feeling so lonely. It's true that sometimes, you find a great sentence at 3AM but by the time you've got a moment to put it in context of a story, or whatever else you're working on, your mind is too fraught and frustrated that the work suffers anyway.

Thankfully, the RRBB has had two nights in the last week where he has slept for a solid six hours in a row. The first time it happened, I was awake the entire time. The second time, last night, I managed to sleep too, not the whole time, but at least a good portion of it. He still hasn't slept through the night but I'm imagining, as his mother's son, it'll be a while before that happens. And my main lesson for this week is to try and stop worrying about it. Fresh air, a little exercise, an adventure or two, and we'll all feel a bit better this week, not so sad, lonely and isolated.

Come on spring.

Notes From A House Frau XIX

Thoughts When The Last Time You Slept Well Was Two Tuesdays Ago

The RRBB cracks me up these days. Here's a picture of him on his activity mat, where he plays everyday for about a half-hour or more before getting cranky and not enjoying the company of his baby-friend the octopus any longer. We've started dressing him in real clothes when he leaves the house as well -- although that's hard to do when sleepers are the best things ever, especially if they have a zipper. And a picture of an elephant. Or feet that are fashioned into "shoes." The whole idea of cuteness just goes into overload on a daily basis in our house. Multiple strangers stop me when I'm out and about and comment upon the beauty of the baby -- and some, without permission, natch, reach in the stroller and touch him. I try not to get annoyed. But it's hard when everything is annoying me these days because I'm so freaking tired.

The being tired isn't the RRBB's fault entirely. Sure he's still waking up once or twice in the night, but it's mainly the fault of the prednisone that when I am up, I can't seem to get back to sleep. Or, I can't get to sleep at all and then there's no point in lying there being miserable -- I might as well get up and read and make more to-do lists than listen to both of the men in my life snore away happily. Oddly, it doesn't make me angry at all to not be sleeping these days, a little grumpy, a little out of sorts, but nothing like the rage that I usually feel after months and months of being on drugs that keep you awake and turn your brain inside out.

Last week I felt a little of the prednisone crazies for the first time. I was a bit down in the dumps thinking that it's been almost six months of really intense treatment for the disease this time around, and I'm over a quarter of the way through my maternity leave. Winter seems never-ending. The snow is still beautiful and we are still getting out and about but my son (my son!) hates hats. He screams when I put them on, screams until he's resigned that I'm not going to take it off, and then screams when his head gets too hot. So I will be very glad when it comes time to abandon his head to the elements and walk around unencumbered by animal-inspired toques.

As I sat up doing a restorative yoga posture called "legs up the wall" in the RRBB's bedroom (because he's still sleeping in ours) reading the other night, yet again after trying to go to bed early, after finally getting the baby down, after my RRHB put down his book and we turned off the light, and I discovered that sleep was like the mystical South for early explorers -- something on the horizon to be expected but never experienced -- I just felt sad. Overwhelmingly sad. And for no reason. Sometimes, I think the trauma and the stress of the disease comes out of my body in sadness -- the ache of my poor beleagured organs can't express themselves and so I just get sad, sad, sad.

It's hard not to feel the pressure of the physical changes of the disease. Hard not to feel frustrated when you see people who gave birth the day after you looking like a million bucks on Oprah (don't make me say who; it's embarrassing enough to be watching Oprah), and you've still got a paunch and your hair is terrible despite a cute new hair cut and you've got a pooch and your stretch marks are still purple and tiger-like and you haven't had a shower in two days because your RRHB is working and you've got the baby and haven't talked to anyone in days and are kind of lonely and it's 2AM and there is no sleep in sight. See, sad.

And I tried, for about 24 hours, to "Change [My] Life in 30 Days" as per a challenge in Chatelaine magazine. They dared me; I tried -- I ate well (followed their 80% rule and then gave up and went right back to eating three muffins and some organic jujubes for lunch), I "scheduled fun," which sounded stupid even when I was reading it, and could just not bring myself to go on a "laughter date." I'm impressed with the writer's ability to come up with 30 ways to change your life, small things to make your everyday just that little bit better, but they were not the long lasting, calming changes that I was craving. They were a bit too Gretchen Rubin (not bad; just not for me) for my taste. So, I've been thinking of my own 30-day challenge, because, of course, what I need is more to-do lists and ways to improve myself during an already stressful time, something to try next month and to keep track of here. Where I'd start -- create a healthy budget and stick to it. The trouble with these "dares" is that they aren't long-lasting. You do it one day and then drop it the next. My life isn't going to be made better or different or less sad by only having the "pick six" things on my to-do list. Seriously, shut up Chatelaine. When did you get so vapid?

Self-improvement seems like such an easy goal when you've got an entire year of not working. When you're committed to examining every aspect of your life -- not only because you're thinking every day of how your life impacts a wee one in your care, but because you never want to take that life for granted. I'm tired of almost dying every couple of years. I'm exhausted from fighting the Wegener's. I'm feeling like I've had my fill of epic tragedy. I don't want to talk about my life in terms of the things that have been denied to me -- because it's so much better to actually think about it in terms of what my life experience has opened up for me. There's a richness in the strength and understanding that comes from struggle. But sometimes, just for a couple of hours, I wish it wasn't all so blood hard all the time.

A year ago, even well before I was pregnant, I never would have imagined I could walk so far and for so long. But, like anything else in life, the more you do it, the better you get, and it seems that the more I walk, the more I can walk. I'd make all kinds of excuses: my hip, too tired from work, too far, let's just take the car -- and now I get angry if I can't get out and get going. A "block" means at least an hour, maybe two, and while I'm doing things along the way, grocery shopping, to-do list attacking, I'm also pounding out the sadness, leaving it a bit behind as I go -- it's the days upon days that I get stuck in a rut, where I am too down to leave the house, those are the moments when the prednisone wins. When the disease wins. When I am struggling to know myself outside of the diagnosis and the bloodwork and the peeing in jugs and the blood pressure issues and the preeclampsia and the rest of it all. If only it wasn't there in my face every time I look in the mirror -- the "moon" cheeks and the thin hair. If only I could leave those reminders behind as well.

Annywaay, I am rambling. The baby's sleeping still and I'm taking advantage and rolling out words like thunder, and not really thinking through what I'm writing about. Perhaps this is the moment to stop.

O Stands For Opulence

I've been embracing my stay-at-home mom status by watching (via PVR, natch) episodes of Oprah, The Farewell Season. I've been skipping a lot of the more morbid episodes, preferring instead to wile away the hours on the more energetic episodes, you know, the "favourite" things, stars promoting their latest films, J-Franz's book club appearance (how uncomfortable was THAT?). Most of the time I can ignore the overt marketing crap because I do think it's honourable to encourage people to read, to write, to live their "best" life, whatever that means. But never before has the sheer marketing value, the desperateness of various different high-profile brands been more apparent than when I was watching the Australian episodes.

Cue sappy, inspirational music as we come upon a very thin man with a beautiful wife and two gorgeous children. He's suffering from Australian cancer, which isn't much different from cancer in any other part of the world. But somehow, these people are special, they are undergoing tragedy. And I'm not belittling their suffering. My grandmother and uncle died of bowel cancer; it's an awful way to spend your last days. My point, though, is that the saints of Oprah-land deemed this particular couple worthy, and found a corporate sponsor, XBox Australia, to underwrite their suffering or, rather, to give them $250k so they can spend a year "enjoying" their lives instead of having to work so hard keeping everything together in the face of tragedy.

This got me thinking. Maybe that's what I need. A corporate suffering sponsor. I could blog about my trials and tribulations having an awful disease like Wegener's Granulomatosis (because, seriously, haven't we all heard enough about cancer, why not let some of the other diseases have the spotlight and the cash influx from companies looking to reformat their image in the age of social responsibility?). I could stand to cash a cheque for hundreds of thousands of dollars and spend the year recovering in the south of France or somewhere equally indulgent to my inner most and wildest dreams. I mean, who wouldn't?

But the whole idea is so repugnant, in a way. That some suffering is worthy of corporate sponsorship, simply because Oprah came to town and wanted to do some good (I'm not criticizing the intentions). What I'm more curious about is how the idea came about in the first place -- did XBox Australia sit down with Oprah's people and say, "we need to revamp our image and we'll do anything to get in bed with you, because you are the queen of all media and our time is running out, with this being the "farewell" season and all." Because it doesn't seem like a likely fit -- video games and cancer. Well, maybe I'm wrong. I guess I could have used some XBox while I spent three weeks in the hospital almost dying, then giving birth, and then almost dying again.

Maybe it's just sour grapes. Maybe deep down I'd love it if Stella McCartney or Jo Malone or Mac or Apple or some other giant brand that I actually respect and admire came calling to highlight my suffering for their own corporate greed. Wait, greed isn't the right word -- and marketing doesn't quite fit either, it's a strange combination of altruism for the sake of selling shit, and I know it's as old as dirt, the idea of companies giving back so that their brands are vital and necessary, and, well, front of mind, but I can't help but feel that it's tawdry to capitalize on someone's suffering regardless of how it must have felt to that family -- like winning the lottery. They are deserved of such a gift, that much is true, but I would love to see a lot more transparency -- it's not Oprah giving these gifts, she's simply allowing big, fat companies to ride on her coattails and allowing them to pat themselves on the back by doing "good" in her name.

And why is corporate generosity such a boon these days? You can't watch a single one of these daytime shows without the audience members receiving diamonds and computers and a whole host of other crap. And I'm not saying we don't do it either, gosh, we give away a lot of books, it's a good marketing ploy, but my company has never underwritten suffering the way XBox has -- they've never sponsored a tragedy in the name of "fun."

So, any company out there looking for a family undergoing some serious tragedy, we're here. We could use a little fun. We could use a little corporate social responsibility. And I promise I won't even mention the fact that my disease was ultimately discovered by a nasty Nazi doctor. Ooops. Maybe that's what's holding everyone back.

New Year's Revolutions 2011

We had a bit of rocky start to the New Year. RRBB fussed until about 4 AM so there was a lot of up and down last night. I haven't given the same kind of thought to my New Year's Revolutions as I normally do -- I honestly take the week between Christmas and New Year to reflect on my year and to read as much as possible. At least I'm still accomplishing the latter.

To review: New Year's Revolutions 2006, 2007, 2008, 2009 and 2010

I did really well compared to last year: I kept the weight off, exercised regularly, even during pregnancy (swimming at lunches at work), spent a lot of time at the cottage, and even managed to get my book out into the world (it was rejected; but that's okay). Instead of the more philosophical goals I generally set out to accomplish, I am taking a slightly different stance this year.

1. Be Well
This means doing everything I can to fight the disease whether it's taking my meds, adjusting to the new course of treatment, taking restorative yoga, going for walks with the RRBB, or simply accepting the fact that I am very sick right now and the most important thing is to get better. I have too much to lose otherwise. But it also means being well in my mind. I have a lot of work to do still in terms of accepting everything that happened over the last few months: I still haven't forgiven myself for letting the disease get so out of control. I know technically it's not my fault but I could have been more aggressive in letting the doctors know exactly how I was feeling or being more persistent in terms of my own care. I was just so happy to be having the baby -- I got cocky.

2. Write
Any words, in any place, in sentences or just in thoughts. I just need to keep going. Between the disease and the RRBB, I have lost myself entirely. This wasn't something I was expecting with motherhood. The sea shift in terms of where my attention needs to be. There's nothing wrong with an old fashioned pencil and paper in a cafe. That's something I can do during the week with the RRBB. He does love his walks. Winter be damned.

3. Be a Better Friend
People were so very, very good to us during our tragedy. Old friends, new friends, it was amazing the outpouring of goodness. I need to find small ways to give that back -- to let everyone know how much I appreciated it, how special it made us feel.

4. Enjoy Our New Life
This one's easy. It's the simplest thing to do right now. Even when the RRBB is screaming and bawling at 330AM we still love him to bits. He'll work it out. Just seeing my RRHB laugh at him when he's turning purple lightens the stress of the situation. Now, if I could only get some more sleep.

5. Stop Worrying About Money
We aren't going to make very much of it. We are probably going to go into debt. I have to let it go and get through the year. I need my RRHB's support during this time. We need to be together here for the RRBB. Everything else will work itself out.

So, only five -- of course, the usual revolutions are in there -- watch less TV (which I have done in spades, I have barely seen the TV since the RRBB was born), read more (which I've been doing exceptionally well with), make better choices when it comes to the internet (the iPad makes this easy; no more internet coma), and use what we've got, consume less (this might be hard as we are, of course, wanting to do so much with the house this year).

What are your New Year's Revolutions?

Notes From A House Frau III

RRBB trying out his chair for the first time. He lasted about 10 minutes before getting fussy. My lesson for this week? Appreciating stillness. I have been sitting in this same position, feeding, trying to get SOMEONE to sleep longer than 25 minutes and NOT on me, since noon. A lot of thoughts go through your head, especially when you're by yourself, and there's something about stillness, sitting, in one place, for so long that lets your mind wander and wonder.

A couple of friends from work came over yesterday. They brought beautiful presents for the baby. And I got to pass along some of the stuff RRBB has outgrown (he's out of newborn sizes!) to one friend as she is due in January. It was good to see them, but it was even better to hear about work -- it's everyone's dream to have time off, paid (albeit the misery that is UI) from work -- because I never thought I would miss it as much as I do. It's not just the routine. The very get-up-and-go and the nature of having something to do each day where there are expectations on you to get there at a certain time and be a certain kind of productive. No, it's something I realized about myself over the last little while. I am at a place in my career, and yes, I'm actually using that word now, where I truly, honestly and completely love my job. It's fast-paced, I have great colleagues, and I was doing really interesting work. Work that got me excited and thrilled to go in to the office each day.

But it's also a blessing to be able to stay home with the RRBB. It's a different, much harder kind of job, with no fixed schedule and little breathing time, even when you do sit for hours. In the last few, I've been resenting the disease a lot, and I think it goes hand-in-hand with my resenting the doctors (as excellent as they are) for all telling me, repeatedly, since the beginning of my pregnancy, that everything would be fine. Funnily enough, everything was so far from fine it's as if fine is the moon and I am the earth and there's no hope in hell of us ever colonizing it for human life. Does that even make sense? Probably not, I'm sleep deprived and therefore metaphorically challenged.

All I know is that from the very moment the disease was diagnosed, it started taking things away from me. Dance, my appearance, my sanity at times (the prednisone crazies), and even when it gives something back -- like our wonderful RRBB -- it takes so much just to get here. My energy, my good health (I was so HEALTHY when I got pregnant; the healthiest I'd been in 15 years!), and now it's still so angry that it's even taken away all of the stuff I was looking forward to about having a baby in the first place: birth (don't mock me; I wanted to experience it) because they didn't want the stress on my body so up comes the epidural and then the pre-eclampsia put the kibosh on a natural delivery; and now it won't even calm down long enough for me to feed the baby if I have to take stronger meds because all my levels are going in the wrong direction. It's hard not to anthropomorphize the disease. To turn it into something separate from me -- a Jeckyll to my Hyde (have I got them right?). The devil to my right-shouldered angel. Yet, the still teaches you things. It teaches you to reimagine all of this in a way that's necessary. They have me on a higher dose of prednisone right now and I'm hoping that'll kick-start the remission again. By Wednesday, I should know what they've all decided but I've decided somethings too.

1. I need to go back to restorative yoga.

2. I'm dying to get into a pool for a swim.

3. There are lots of people out there who love me and the RRBB a lot.

4. Blogging is a form of writing so it's okay if it's not the novel right now. I'm moving my fingers, forming sentences, and the rest will follow. I am willing to wade through the rejection. The book is worth it. It will eventually get published. I have to believe this, it was my one regret last year when I almost died the OTHER time, you remember, the whole appendix nightmare. All I kept thinking was: "I never published my book."

5. Every day RRBB gets older, bigger and more experienced. And so do we as parents. These are not small steps.

6. We made it through three weeks in the hospital and more than one near-death experience. And now, weeks later, that seems like a world ago. Time heals. It's cliched but true.

7. The stillness encourages patience. Patience is something that I could always use more of, and it's something that only comes when you least expect it.

8. Books are wonderful and necessary to my life. They are worth losing sleep over.

9. Television, not so much.

10. When you come to visit me, please, always bring food -- I can barely get dressed in the mornings I'm so exhausted. Having a meal, a snack, a drink, anything, means so much. I can't even tell you.

That's all from the House Frau today. No tears.

Oh, and the baby has started smiling. We've tried to catch it on the camera but he's like Snuffle-smile-agus, every time he does it the camera's either just missed it or he won't do it again. Sneaky RRBB.

Notes From a House Frau II

Portrait of a Baby Whisperer baby, not. We tried the Baby Whisperer "EASY" program for two days and it made our RRBB the most miserable he'd ever been in his short life. He had two terrible nights, two awful days, and the program just didn't work for us. I also made myself insane consulting the book and trying umpteen different things because I thought I needed to fix something that wasn't broken. Anyway, we're back to normal now, and back to our actual easy baby. Sleeping, eating, waking, and doing quite well at night. My lesson for the day, not every book has the solution, and you don't need to listen to every one just because it's written down. You can make yourself crazy trying to do the right thing if only to stop listening to your instincts, which aren't always wrong, even if they are inexperienced.

I was at the kidney doctor this morning, and it broke my heart. The disease is going in the wrong direction -- my tests are rising when they should be falling, and the meds aren't controlling the Wegener's in the way they were supposed to. I see my SFDD next week and they'll probably suggest alternative treatment, which means no more breastfeeding. But to let things continue in this way means I'd be on dialysis in six months, and I can't lose my kidneys.

It's been so long of dealing with the disease, and being sad and frustrated is par for the course these last few weeks. I'm trying hard to find the life lessons. To see the silver lining in the cloud; to not get disparaged or angry or resentful of the disease and my broken body. Feeling scared has pervaded my days, I don't want to get sicker, I want to get better, so desperately, but I also have to be patient. Funnily enough, the doctor today described my pregnancy as one of the hardest she's ever seen. When I was in it, it was only rough for the last few weeks -- for the most part, it went exceptionally well considering the circumstances, and all of that is how our beautiful RRBB managed to be so healthy by the time he landed in the world.

So, I've spent today being sad, frustrated, and upset -- all in equal measure. Yet, there's something about my family, my RRHB and my RRBB, that I find utterly delightful. Whether it's how we spend the mornings, or how lovely the baby is at 2 AM when he's just about to fall asleep, and if this is all I can do right now, be here, with my family, because that's all I have energy for, that's all the disease will allow, then I need to be calm and careful. Take it day by day and understand that I will get better, it'll just take a long, long time. Yesterday, I did 10 sit ups. Today, I'm going to do 11. And that's how I'm going to do it, one small change by one small change, take the new drugs, deal with the side effects, and find the strength to be the best house frau I can possibly be under the circumstances.

The End of Life Outside My House - A Top 10 List

Seems like I am starting to feel a bit better. I have good days and bad days, today I am weepy and feel heavy with disease, but yesterday I felt terrific, and the day before that I walked as far as I have since leaving the hospital, all the way to Ossington from our house, which is at Dundas and Brock. But the days are blurry and there's little difference between one half and the other -- time just stops in a way, even as it moves along. I have lists, I don't finish them. I have things to do, but I don't do them. I have so little energy but as least they are all slowly getting done. No pressure, that's the trick.

1. The Walking Dead is an excellent, and not too, too scary zombie show. My RRHB tried to get us to watch another zombie show, made by the BBC about a Big Brother-esque reality show that gets invaded by the chompers but I couldn't stand it -- it was terrifying. But I like the story they're presenting and the characters in the AMC drama. It's a PVR keeper.

2. I am not ashamed to say, well, actually, I am ashamed and embarrassed, but I've started taping BOTH Oprah and Dr. Oz. Yes, I am that cliched house-frau at the moment. But at least I won't miss J-Franz on Monday and today I learned that willow bark supplements might stop the creaking in my knees. See, useful, even if you're only half watching and half either breastfeeding or trying to get caught up on blogging.

3. There was a time where I watched movies. Now, I watch portions of movies. And haven't seen anything good in weeks. Any suggestions? I miss movies. We have, however, been watching the boxed set of Prime Suspect, and it is excellent. Truly phenomenal. In fact, I half-watch just about everything. Television shows, especially. Often, I fall asleep.

4. I have not finished a cup of tea since the RRBB was born. Or a sentence. Or a blog post in one sitting. Or a household chore. In fact, if I get one thing done a day from my rolling to do list, I feel like I have run a marathon. Time melts when there's no significant difference between day and night. That's not something they tell you when you're pregnant.

5. Law and Order: Los Angeles is a pale, pale, pale, pale replacement for the mothership. The closest you can get these days is Law and Order UK. Hell, it's got Apollo from BSG on it, and Danny Baldwin from Corrie Street, and they are both aces. It doesn't even matter that they're simply reversioning old Mothership episodes for a UK audience. We still watch it every week. It might be my favourite show. Either that or Cougar Town, which I adore. Don't judge.

6. Before I came home from the hospital with the RRBB, we had carpet installed upstairs. It's so cozy and awesome. There are many plusses to having carpet in your bedroom and in the hallway when you walk down after having a shower. But to prepare, my RRHB had to move all of our furniture and all kinds of other life rif-raf from the upstairs. We had friends and family help him, which means our stuff is spread out all over the house. ALL OVER THE HOUSE. I can't find anything. We didn't even know where our camera was (has since been found) so Sue, my nurse in Labour and Delivery at Mt. Sinai, had to take pictures of RRBB's birth. They're great shots. I am glad we have them. But how unprepared is that? The carpet was literally being laid at the same time they were, ahem, putting some gel somewhere to get things started. We just didn't expect him to come so soon. Hence the fact that I have one, that's right ONE, outfit that's fit for more than a walk around the block and it's still maternity clothes. Hopefully doesn't look too, too like I'm still pregnant but I literally have nothing else to wear.

7. Speaking of clothes. I have lost all sense of self respect. These days, a perfectly acceptably outfit for a walk to the grocery store: no bra (don't ask; it's a disaster) or the one nursing bra that I bought from the hospital breast feeding clinic store because I was trapped in the hospital for three weeks; a pair of blue jogging pants, with extra long legs, so I need to TUCK THEM INTO WORK SOCKS; sneakers and a sweatshirt and/or, well, a different sweatshirt.

8. Often, I'll wake up with a terrifically itchy head. Like, I'm convinced I've got lice or we've got bed bugs or a terrible case of dandruff. No. It's none of those things. It's just the fact that I haven't washed my hair in gosh-knows how long, like over a week, and hadn't noticed. Oh, I've had showers. But I can't even seem to remember to wash my hair when I'm under the water and in the tub. IN THE TUB.

9. No more books until I read everything in the house that I haven't read. I am making a promise to myself. So far, it's going well. But Amazon.ca is very hard to resist. VERY.

10. I'll have to say that it's lucky I am breastfeeding. It's definitely combating the prednisone appetite. It's not, however, doing anything for the other side effects for the meds. The puffy face. The hair falling out. The crazy dreams. The weepies. But, for the first time in a long time, I don't have the psychosis. And that's a first. There's a silver lining in every single cloud, right?

10.5 This is my favourite photo of the RRBB we've taken so far.

It's OCTOBER?

I keep promising to get caught up here and then never find the time. There's a good reason for that -- I promise. I haven't wanted to talk about it online at all because of the complex nature of the situation, but my RRHB and I are going to have a Rock and Roll Baby (RRBB) in November. It's a high risk, complicated pregnancy because of the disease but so far we're both doing just fine. But it means I've had very little energy for the last few months and will probably continue to be exhausted until RRBB makes his/her entrance in about six weeks. I have, however, been reading.

I'm through #43, #44, #45, which were the next three Sookie Stackhouse novels, Living Dead in Dallas, Club Dead and Dead to the World. I'm halfway through Dead as a Doornail. It's perfect reading for sitting and waiting in doctor's offices, and for commuting, which is what I've been doing. I'm finding more and more that I enjoy the TV series so much more than the books, but as far as fluff goes, you simply have to look beyond the absurd nature of these stories and just allow yourself to get sucked in. Although, I will admit that I rolled my eyes at the appearance of a pirate in the one I'm reading now. A PIRATE. Yawn.

#45.5 The Coke Machine
Because I'm not finished this book, and I hate writing about books before I'm done, I'm not going to say too, too much except that I'm finding some of the information within truly shocking. When I was reading the book in bed (I was feeling very unwell a couple of Thursdays ago). I kept yelling out to my RRHB, "Did you know THIS!" and repeating some absurd fact about the company, the way it runs its business and how shocking it all is. Makes me never want to a) drink a Coke (not that I do anyway), b) drink a Vitamin Water (although I'll reserve that for a treat at the movies; it's essentially pop anyway. POP!) and c) ever drink any kind of bottled water. Anyway, I'd highly recommend this book and I've only read 35% so far (I'm reading it through my Kindle app on my iPad).

#46 - The Comforters by Muriel Spark
We read this for my book club, The Vicious Circle, and I'm simply linking to Kerry Clare's notes about our meeting. She sums it up beautifully and I can't say any more wonderful things about the brilliant group of reading women I get to sit down with once a month. They're spectacular book people. Oh hell, they're just spectacular in general.

I have one more book I want to blog about but I'm going to give it its own entry, Damon Galgut's In a Strange Room.

Good Grief, What's Happened?

Yes, I KNOW.

It's been ages since I've put a word in edgewise in this space.

Yes, I KNOW.

I've gotten captivated by shiny new objects (iPad) and delightful 140-character bursts.

Yes, I KNOW.

Here's the good news. My life has actually calmed down. I've only got one job to do at work now, with a fancy new title (just call me Ms. Associate Director, Digital Product Development), and that means I can actually leave on time and be home in time to do some blogging.

Here's the bad news. The weather's been too nice to spend it inside blogging.

And the even worse news. We're spending just about every weekend up at the cottage so I can't even get caught up there.

But here's some other good news: I've been reading like crazy. I've probably finished about 10 books since I posted about the newest Larsson (including the first Larsson, which I hadn't read yet) and then some.

So, when I have a moment, and I promise, I will have a moment. I'll get back on the wagon.

Stalled

Between books. Supposedly on vacation. Spent hours gardening yesterday, which was great, but there's still so much to be done. Photographs to follow this afternoon while the sun's still shining and amazing.

My Arrested Development

My life these days is an embarrassment of riches. I have about a dozen books on the go, all of them exceptional in their own ways, and no less than another dozen on the rails dying to jump into my TBR pile.

Here's what I'm reading right now (as in have a bookmark in the middle of or have read the first few pages to wet my whistle):

Solar by Ian McEwan
I'm three-quarters of the way through McEwan's latest novel, and it's predictably excellent. His prose is dense but accessible; his character obtuse, irresponsible but brilliant; the story remains intriguing but there's something I needed to read first...

Lost River by Stephen Booth
...for work. They're [meaning elements of our marketing department] doing a B2B promotion this summer that involves a lot of in-house peeps reading and "championing" certain books. Booth was "assigned" to me. So far, I'm really enjoying it. It reminds me both of Mo Hayder and Law and Order UK. However, I had already started...

The Girl Who Kicked The Hornet's Nest by Stieg Larsson
...a friend @Penguin had read how much I enjoyed the second book that she kindly sent me her hot-in-demand ARC of the third book. I'm about 100 pages into it and LOVING ever minute of it, but also need to move on to...

The Dead Republic by Roddy Doyle
Because A Star Called Henry is one of my top 10 all-time favourite books. I couldn't get through the second book in the series (I'm convinced it just wasn't the right time to read it) but when it landed on my desk, I couldn't help but read the first 15 pages. Right now, Henry's lungs are soaking up the air as he returns to Ireland after being away for years. Doyle's writing is just so captivating. But speaking of reading first pages...

Secrets of Eden by Chris Bohjalian
...when this book landed on my desk I read the first 5 or so pages and it also caught my attention. Bohjalian is one of my favourite "weekend" authors. Every single one of his books I've devoured in one fell swoop from start to finish, taking few breaks in between, and preferably at the cottage being surrounded by warm sunshine and a cool lake. However, before I get to summer reading I need to finish...

Wolf Hall, Black Water Rising and The Lacuna
...before June 9th when the Orange Prize is announced. I'm going to try to read the shortlist, which means tracking down the other two books. Until I do that, though, I need to be sure and finish...

A Tree Grows in Brooklyn by Betty Smith
...which I started at a doctor's appointment about two weeks ago and thought was just charming.

As you can see, I'm all full of starts and not quite up to scratch with my finishes this week. This list doesn't include the pile of books I have beside my bed that includes a New Face of Fiction, a few books of poetry for April's Poetry Month, and Beatrice and Virgil, whose first chapter turned me so off the rest of the book that I'm not sure if I'll be charmed by the remaining pages.

Now, the bets are in. What will I actually finish this week. I've got to get at least ONE book read to completion so I don't feel like a complete reading failure.

Playing Catch Up

It's been a busy few weeks. I've been to 4 conferences in as many weeks and am quite sick of the inside of really large rooms with bottled air. That's not to say that I'm not thankful to have gone to all of them, but I feel so disconnected with my online life at the moment, and it seems like I'll never get back on track. Blogging once per day, what's that? Finding time to upload photos to Flickr, wha? Posting more than a couple silly Twitter tweets, impossible.

Where did it all go so wrong?

Right now I'm so filled up with pet peeves that every sentence coming out of my mouth is filled up with anger and frustration about things I can't control.

For once, I'm glad it's raining. Pathetic fallacy at its best. I know all I need is a proper, lying around on the beach vacation, but it's not feasible these days. I'm also not getting enough exercise -- that too is easily rectified.

We had a great, fun weekend, a long weekend, and it was really nice to get out of town in new and adventurous ways. The weather encouraged us to do some antique shopping in Guelph and Mennonite country. And while we didn't buy anything, we did have a nice day of just driving around looking at junk. How do so many knickknacks exist in this day and age? Why did people buy so much stuff?

Okay. Moaning finished. I've got two great books to review, and that's surely better than moping around in my digital life, isn't it?

Last Week In NYC

I was in New York City all last week, both for work and for pleasure. If you follow me on Twitter, you'll have been kept abreast of the many celebrities we saw in our travels. Odd, because of the nature of the weather (holy snow batman) but fun because I always like imagining what people are like in real life. We did not, however, see Ethan Hawke, which would have made me so dizzy with excitement I don't know if I'd ever recover. As my RRHB likes to tease me, if we ever did, he'd walk right up to the man and profess MY undying love. Heh.

We saw Catherine Zeta-Jones carrying a huge umbrella and smoking as she walked near the Natural History Museum on the Upper West Side. She's teeny-tiny. That Friday afternoon we spent over four hours wandering the halls and looking at all kinds of marvelous things. The only problem being my sh*tty North Face boots that leaked and which have even started to fall apart a mere months after buying them.

The next day we went for a nice walk in Central Park (I took a great photo of what it looked like with all the snow) and then headed to the Lower East Side to wander around. While we were at Katz's deli enjoying a fantastic sandwich, Jake Gyllenhaal was there with a photographic crew who were taking photos of him wearing some really snappy clothes. He laughed a lot, and was very kind to everyone in the restaurant. My RRHB said, "How come he didn't recognize me?" When he first noticed he was there. Funny. On the way out, one of Blair's cronies from Gossip Girl was hanging outside Katz's with her friends, her name is ridiculous, and so I am not going to type it. Judge me if you will. Then, coming back up Broadway we walked right by Chloe Sevigny.

Then, we shopped. A lot.

We had dinner with a friend in the East Village, and by Sunday AM we were both exhausted. Still, we rallied and wandered through a magnificent exhibit at the International Center of Photography on Sixth at 43rd -- it was right by our hotel anyway. More walking. We spent a good chunk of time at the Library looking at their free exhibits -- Candide and maps.

Again, more shopping. Then a little stopping for a pint so we could watch a bit of the hockey game before climbing in a car and heading to Newark for the flight home. While checking in our bags, I got a little flustered, and when we passed the next person in line, she smiled kindly at me. That person? Naomi Watts. She was on our flight to Toronto, and I'm not going to judge, but she was reading In Touch magazine. That made me smile. It must be hella odd to pick up one of those rags as airport reading and find pictures of your friends. Being a mainly Canadian flight, no one bothered her, but she did do a lot of the "I'm looking at my Blackberry because I don't want to seem like I'm standing here all alone" stance that so many of us are familiar with. I'm a pro at that stance.

And now a whole week has gone by. I've got goals this weekend, both for my novel and for my latest classic start, and am taking Monday off to complete them (along with going to the dentist, ugh). I'll just be very glad to be done both. My brain is too full of all kinds of stuff these days to settle down.

The photos from the trip are up on my Flickr. The shot of the socks made me laugh -- that someone tried to die out their soppers stuffed in the stones of the public library rang quite true for me. On the Friday of the big snow storm, I took off my socks in the museum and wandered around trying to dry them out and leaving a nasty, smelly-smell behind me for anyone daring to come near us. Ah, the human body.

Saturday

My RRHB's out and about this morning. He was up and gone before I even contemplated what being awake actually means. Still, hours later, I'm the same. Half-asleep, kind of dazed, and contemplating writing. Not the idea of writing. The actual fingers-to-the-keyboard-get-some-good-work-done-look-at-all-this-time-you-have writing. We have no food in the house, but there's a grocery store literally next door. Even that effort seems like too much when you had a shitty night's sleep and your brain remains muddled.

It's been a busy week. On Thursday night we went to see a rough cut of Small Town Murder Scenes, the film (somewhat) inspired by my RRHB's second record. Then yesterday we were at The Sixth to see Andrew Penner and The CFL Sessions (Henry Adam Svec). Work's been predictably crazy and all next week I'm in NYC for work/holiday (first half work; second half weekend getaway).

Funny, I was so taken in by Henry Adam Svec's CFL Sessions and his delightful storytelling -- which caught me off guard -- that I found myself uttering, "oh, how nice!" when he started talking about song collecting, archiving music, Lead Belly and the prison system, pure "Music," and this fictional character of Staunton R. Livingston that I was actually a little upset when my RRHB told me that it wasn't real. The laughter in the room turned ironic, which isn't a bad thing, just different from my original interpretation. The music was lovely, aching a little, a bit like Bob Wiseman, and when my RRHB and I were talking about that he said, "Wrench Tuttle wasn't real either and you love that record." And I said, "WHAT?" Shows you how much I know.

Andrew Penner came on around 10:30. The photo's above. He has an uncanny ability to create an entire song's worth of music by just his voice and a couple of instruments. It sounded like an entire band. I admire that -- it's kind of akin to someone writing much bigger than they are too. Long, luxurious sentences that invoke choruses of people standing behind the writer egging them on.

Yes, I'm tired. But I wrote this sentence sitting in the venue last night. I liked it then, I think it's kind of cheesy now: "He could learn to live without them, like eyes adjusting to the light, everything would eventually clarify."