my tragic right hip

Busting out bad joints all over the place

August 7th, 2011

Notes From A House Frau: The Summer Edition II

Our bed at the cottageBless my family. My aunt didn’t like this bed set nor the mattress cover she had bought, so we brought it up north along with a new bed this summer. What a difference a comfortable bed makes. The last bed we slept in tilted so far down that you ended up sleeping in something that approximated a Canada’s Wonderland gravity-depriving ride. This bed has made my summer. We are sleeping so well, even with a leaking roof, even with a mouse infestation that I have never seen before in my life (we are finally winning; they ate our COUCH), even with the ups and downs of the weather, and even with the constant dragging sickness that’s following me around like a bad smell this summer.

This week we were back in the city. I had doctors’ appointments, blood tests, and other miscellaneous medical-related things to do and, plus, we had a wedding reception to attend on Saturday night. It’s been a good week. A good news week, I should say. For the first time in ages, the reports coming back from the doctor aren’t filled with horror, dread and more tests. The results of the kidney biopsy I did about eight weeks ago were surprisingly good. There’s a lot of damage from both the pregnancy and the insane flare caused by the aforementioned pregnancy, but there was a very, very small amount of actual disease activity. That means the medication is finally starting to control the Wegener’s. That means I only have to be on the big guns for another six weeks. That means I’ll be off them before I go back to work in October (just barely but it’s something). They’re also starting to taper the prednisone, which is awesome. Just to be off that horrible drug for the first time in a year will be a revelation.

So, for once, good news. I hardly know what to do with myself. Celebrate, I imagine, but the medication they have me on to stop the protein going through my organ (the blood pressure medicine) has dropped my BP so low that I feel a little foggy most of the time (92/66! 90s/50s when I take it at home). Put me in a restorative yoga class and I might end up in a coma. Kidding. But celebrate is what I did on Saturday night at the wedding we were graciously invited to. Never in my life have I been in one place so filled with Wikipedia entries for Canadian musicians. I had three-point-five glasses of white wine — more alcohol than I have had in almost two years, and promptly spent the evening telling everyone how uncomfortable my underwear were, and then, after taking them off, that I, ahem, had to take them off. It was sweltering, rained a bit, but we were outside with great music, and our impromptu dance floor consisted of about four or five of us die-hard dancing types (at weddings and my living room now only) requesting insane songs of the poor deejay and shaking it so hard that both shoes and shoulder straps came flying off and more than one drink went in the wrong direction. At one point, my RRHB was talking to a member of a huge Canadian indie band when I promptly told him the underwear removal story and then flounced my way off to shake my naked-under-my-dress ass to A Tribe Called Quest. Yes, it was that awesome.

But there was something else in the imbibing than just getting drunk in a glorious celebration of the newly and happily married couple. A lot of people ask me on a regular basis how I am and often my response is, “I’m not dead!” Yes, I’m being flippant. Yes, it’s not entirely true that I’m this-close to death’s door anymore but I find it’s easier than to go into an hour-long diatribe about my current mental and physical state. Now, I’m just smiling and saying, “fine,” even though that’s not entirely the case. This year has been magnificent in so many ways: I’ve got to spend a ridiculous amount of time with my wonderful child, taking, I hope, good care of him, warming him up for his time with his father in the fall by getting him into good routines, good behaviour (ha!) and generally encouraging his already amazing little personality. But all of my time, any spare time, any awake time, any time away from the baby has really and truly been taken up by disease-related crap. Doctors. Blood tests. Biopsies. More blood tests. Different doctors. Stress fractures. Baby weight. Prenisone weight. And it all takes a huge toll on you. I am an entirely different person this time around. I no longer wish for the disease to take me, Dylan Thomas style, raging into the night (I know, I know, I’ve got the poem all backwards but you get what I mean, right?). There were times in my life when I would tell the Wegener’s just to be done with it already. I’m sick of it and I’m sick of being sick. But now, I’m just tired. Many months have gone by where I believed that I would never catch up on my sleep, let alone get enough rest to battle the disease back, and my armour, while pockmarked and pitted, finally seems to be holding again.

So when the SFDD asked if I could reschedule my appointment from last Wednesday to this upcoming Wednesday, I did something entirely out of character. I said no. I told them I would be up north now until September. I am taking a holiday.

┬áBecause before you know it I will be back and work and done nothing with this amazing gift of time outside of the RRBB. Not that he isn’t a job enough, but as I was speaking to a friend, a father to a three-year-old, he was laughing about how funny the adjustment period to parenthood actually is — he’d take care of their little guy, then drop him in bed, play the guitar like crazy, create some art, and then remind himself to go to sleep at a reasonable hour because he’d wake up to another crazy-filled day of taking care of an almost-toddler.

The RRBB is crazily still in this photo. That’s a rare occasion. He’s pulling himself up on everything, half-walking, crawling like a maniac and smiling impishly when I or his father say no. There’s little we can do to contain him. He barrels into everything: hard objects, soft objects, sleep. And I love every inch of him, even when he’s wriggling so much that it takes both of almost twenty minutes just to change his diaper. Imagine what it’s like with me on my own.

It’s been almost a year since the disease came back with a vengeance. That’s a long time to stay cooped up in my own head. It’s no wonder I exploded on the dance floor in a fit of giggles and silly comments last night. I am lonely. I know that — I have been missing my various communities for months now, either too sick or too tired to really be my old self. Yet, I’ve clung to many good things over these hard months: a few well put together sentences, sometimes my own, sometimes belonging to someone else, have given me pause. I am completely different. I am altogether the same. And I have two months to try to feel “working” better and not just “mummy” (who can stay in her jogging pants and not shower for two, sometimes three, yes I’m saying it out loud, days) better before heading back to work.

 

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

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