my tragic right hip

Busting out bad joints all over the place

May 30th, 2012

Living With WG, Part 1584258

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.

But then, bad news–all the prednisone has given me a form of pre-Osteoporosis in my spine (my hips are normal according to the bone density test) and I haven’t been taking calcium regularly (I just didn’t think, you know?). So today I’ve loaded myself up with calcium and vitamin D, and I’m going to rededicate my efforts in terms of keeping up with supplements as I do with my actual disease meds.

And then there’s the truly awful bit of being so overweight from pregnancy, from prednisone, from not enough exercise and the exhaustion that leads me to the couch after work each night. I spent a fun morning on Monday with Kobo supporting an ebook we published called Seen Reading by Julie Wilson. The video is above. It’s super-cute and the morning was nothing short of inspiring. You know me, I love books. I love finding people reading books. And I really love Julie’s work–it was a great promotion. But, ugh, to see myself on the video in my chubby-chubby-chubby state is so defeating. I know it’s not going to change overnight but sometimes, as with anything that has to do with the disease, I find it impossible not to feel totally defeated.

In a way, since giving birth, I’ve come to terms with how the whole process has destroyed my body. I mean, healthy women go through this too, how things are forever changed as a result of GROWING A HUMAN, but coupled with all that I’ve dealt with post-partum, the broken pelvis, the flare, the meds, the side effects, the weight, the symptoms, it’s just a lot. A LOT. In the past, I’ve had a hate-hate relationship with the Wegener’s. I resented it for taking away so much from my life. I’ve raged against it having to happen to me. I’ve cried and cried and grown massively depressed and resent the medication and how I will probably be on it for the rest of my life. However, this week I’ve been thinking about it differently. I’m lucky to live in a country with such great doctors. I’m lucky to HAVE such great doctors–many of whom who have saved my life on more than one occasion. My cat-like luck hasn’t run out yet and I should be thankful for that, but it’s a hard thing to thank the universe for dumping all of this on you. It’s a hard line to cross to find the balance between knowing that you could be dead in a matter of months if the disease just decides it’s so. In a way, every day that I have in my good-bad way is a gift. It’s corny. It’s Oprah-esque. But it’s true. They caught the disease in time all those years ago. I’ve been monitored ever since. My nose hasn’t collapsed. I’ve still got one good hip. I’m a total chubster these days but a baby grew out of all that wobbly stuff.

I guess it goes back to all the body issues women have in general. Back to feeling inadequate and never happy with how you look. Sometimes, the worry and concern about it all takes away from the unrelenting happiness of my life on the outside. Nothing beats having your kid lie beside you at 530AM as he repeatedly pokes you in the eye exclaiming, “eye! eye!” Honestly, it’s a moment I wouldn’t trade, as much as I am exhausted, beaten, and destroyed from the inside. On the outside, I’m still standing up, propped by my tragic hip on one side and the sheer determination to get over all of this crap at some point so that I can at least enjoy the life I have if and when the disease decides it’s had enough and simply wants to finish me off. Hopefully, that’s not a scenario that’ll happen. Indeed.

3 Responses to “Living With WG, Part 1584258”

  • Heather says:

    i am so amazed at what modern medicine can do. Imagine the havoc Strep throat used to cause. Wow. I’ve had strep so many times.

  • Rachael says:

    I just found your site and although I haven’t had a child, I can identify with the rest. I have microscopic polyangiitis (autoimmune disease that’s *thisclose* to Wegeners) and I hear ya. I’ve been on more prednisone than I like, more times than I like. I still hate looking at pictures of myself on high-dose prednisone. I totally get what a relief it is that there’s no blood in your urine, and know that as long as you stay at some consistent-ish kidney function, your’re golden for now. Mine lasted 25 years–much longer than anyone expected. And I found out there was still life after that too.

    You are strong. Oprah-like or not, it’s the best thing you can do to at least try to appreciate each day–even if you don’t see anything much worth appreciating. Stand. If you can’t stand, crawl. Remind yourself that the disease can hurt you, but it can’t beat you. I’m out here standing strong too and pulling for you.

  • Finn Harvor says:

    This is painful yet necessary writing. It helps underline the degree to which coping with a lot of the conditions that afflict the body are about management as much as recovery — with good management itself hopefully being a form of recovery. Good luck. I’m rooting for you.

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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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