Category: Battling Wegener’s Granulomatosis

My kidneys are spilling protein. For any of us with kidney disease, or having your kidneys impacted by another disease, you can understand what this means. It’s a sign that they’re not working all that well, and having protein run through them damages them even further. For a while, I was taking this blood pressure medicine that helped–it stops the protein, by opening up something-or-other (I do not know the specifics), from doing further damage and it was working for a while. The downside was that it plummeted my BP and so I was dizzy all the time and super woozy. So, they took me off of it.

But now I’m going back on the meds, and I’m fine with it–I know the routine, I know I don’t have high BP, and so, psychologically, I can cope with this medication. I can not feel angry at it or damn it all to hell and “forget” to take it because I’m so pissed off with the disease in all its forms.

What’s funny is that the doctor and I did all this diagnosing via email. He sent the test request to me via email (well, his secretary did; she’s awesome). I emailed them that I’d done the test and should I take the meds again, and he said “yes!”. I find it all quite amusing.

And even though taking a 24-hour urine test is mildly (read: extremely) annoying. All the back and forth around it isn’t/wasn’t. What a revelation, what a way to live your life — easily and actively knowing what to do and just actioning it. It’s shocking actually. Can you imagine if everything was that easy?

It’s been a couple of weeks since I’ve written about living with the disease. As I saw the SFDD this morning, it might be good to work it out a little bit here. Having the RRBB did such a number on my body that I am barely recovered even now, 19 months later. I’m still actively fighting the flare that resulted from the later stages of pregnancy and it was the most severe one I have had since being diagnosed with the Wegener’s all those years ago. There’s never wholly good news from the doctor, and there’s never wholly bad news either. The good comes in the form of my lab work, which is really very stable. I’ve lost another 1/3 of my kidney function as a result of all of this, but that we’re on steady ground (and it’s not rising up up up), is a good thing. There’s protein being spilled, but it’s actually better now than it was three years ago, so that’s something, and there’s zero blood in my urine (gross, I know), which is another marker that there’s probably little to no disease in my actual organ. See, good news. The rest of my bloodwork is okay, I’m anemic, but that won’t improve because of my kidneys, but, on the whole, it’s a very stable picture. See, good news. Continue reading “Living With WG, Part 1584258”

No aches. Very little sinus pain. Fatigue not crippling — what is happening this week? What? WHAT? I am starting to feel better. And what a difference better makes. I need every single bit of energy I have in the last few days — RRBB has a wicked cold, and we had supper guests on Monday, and more supper guests to come later on in the week, and then a cottage to get to this weekend, all of which means that there’s no time to pause to feel sorry for myself, really, I’m just too tired. But, for the first time in months, the tired is a good kind of tired. It’s not a fatigue that’s threatening to overtake me, disease-addled, crippling exhaustion. It’s a “my life is really busy right now” and “isn’t it fun to have a bit of a life” kind of tired.

The slowness that I’ve been craving will need to come from my own attitude because I know that if I get manically stressed out about stuff, about work, about life, about the baby, then the disease perks up again and pokes its way out into my body. Learning to manage stress has never been a strong point for me; it’s never been something that I’ve been remotely successful at doing. Sure, I can read magazines and articles and books and talk to people and doctors and blah de blah but it all comes down to the fact that I’m a worrier. My mother was a worrier. My grandmother was a worrier. My aunts are worriers. My whole family’s steeped in a long-standing tradition of completely and utterly freaking out about everything. Continue reading “OMG: What IS This Feeling?”

So, in my new calendar of keeping up with blogging, I have marked Wednesdays as the point in the week where I’m going to talk about the disease, or, rather, living with the disease. Part of that is posting up horrible self-portraits to try and get over some the acute anxiety I feel about being a diseased person. The whole point of the small changes that I have been trying to make is getting back to a place where I don’t let the disease define me. But when it’s staring you right IN THE FACE sometimes it’s hard to get passed it. Puffy cheeks, chubby body, exhausted, bags under your eyes, sinus pain — there’s not a lot I can do about the symptoms. At least I am back to the small dose of prednisone this week (only 5mgs), which means that my appetite and cravings should go back to normal over the next couple weeks.

Then, it’s just a waiting game. Waiting for test results. Waiting for doctor’s appointments. Waiting for doctor’s opinions. Waiting for people outside of my body to tell me what’s going on inside my body.

The conflict surrounding all of that sometimes overwhelms me. My energy curdles throughout the day, turns sour like milk left in the sun, and by the time I get home I’m cranky and unhappy. I can rally for the baby, spend a somewhat energetic few minutes playing with him before bath time if I’m not totally wrecked but then, nothing. And herein lies the really hard part — because there’s so much I want to do.

Living with constant, persistent illness is hard, physically, psychologically. And trying to manage that along with the daily grind of everyday life, well, it’s no wonder some people simply don’t survive. So, I’ve been making my life small these days, like I’ve been talking about a lot lately. Last week I focused on grooming (it’s sounds ridiculous, doesn’t it?). I got my hair done, my eyebrows done, and a pedicure is on the horizon. Feeling like yourself and not your diseased self is a good start. This week I’m trying to take care of some life-organizational things in small batches. Next week I’m getting back to diet-related stuff. I’m going to try one day without sugar. One day at a time. One goal at a time. One success at a time. It takes the pressure off to be completely better, because I’m still feeling so very very tired, but my mind just won’t quit.

Two weeks ago, when I got the news from the SFDD that the disease was most likely flaring, and he bumped up my meds — back on the Septra for chronic bronchitis (it’s cleared up), back on a high dose of prednisone for the joint pain and sinus infection-related stuff (it has also cleared up), and I posted up a note about feeling defeated. My friend Kat, who is one of the healthiest people I know, suggested that a session of hot yoga at Iyashi Bedrock Spa would do wonders.

Having never done hot yoga, and being so out of my own yoga practice, I was a little (a lot) nervous. But the spa is an incredibly welcoming place — very quiet and unobtrusive, you enter into a room that’s beyond hot, lay down on some black silica bedrocks imported from Japan that smell wonderful and then, well, you sweat like the dickens. My fingers were sweating. My ears were sweating. My hair was dripping. After laying down for a half-hour, the teacher, a wonderful, quiet-spoken Englishman, takes you through some very gentle, restorative poses, shoulder stretches, hip stretches, legs up the wall (my favourite!), and then after an hour (with a break in between; there’s no way I would have made it through without the five minute pause; it was just so hot!), you’re done.

I could do about half of the poses. Some I didn’t even attempt because I am so very out of shape. But with everything in the last few weeks, I’m just trying to take small, quiet steps towards a more healthful existence. I didn’t push myself. I didn’t worry about looking like a fool (although I am pretty sure I did). I didn’t care that my hair was standing straight up and that my face was as red as a McIntosh. Because I felt amazing. I felt cleaner inside than I have in ages. It’s a very odd feeling, having your body invaded by a disease. You know it’s there — there’s a foreignness to your system that’s easily recognizable. The only time in the last twenty years where I haven’t felt invaded was the week in the hospital having the plasma exchange treatment — where they removed all the bad antibodies that carry the disease from my blood — and I felt, again, amazing (well, as awesome as you can feel with a central line and being this-close to death, you know…).

There were points where it was almost way, way, way too much for me. I had eaten some soup before the class, which I do not recommend for anyone thinking they might like to try this kind of treatment; I felt nauseous in parts because I think it was all too much for my system. But the clean, stripped-down feeling from the inside out was something I didn’t expect. My body is so clogged up all the time with medication, with disease, with stress, that when it’s presented with another option, it doesn’t quite know what to do, and so even to be freed from that for an hour, well, it was like taking a vacation from the disease. And Kat was absolutely right — it did wonders for my mind, body, soul.