Category: ragdoll rambles

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.