I know I know I know

I know it could all be worse. So much worse. Just Google search for images of “RA hands” or “RA nodules” or “RA feet”. My hands still look normal, even if they don’t always feel that way. I think I may be developing a nodule on my left wrist but I’m too scared to ask my rheumy, so I’m going to pretend that I’m just imagining it. My feet are shaped like shovels, hurt most of the time and even my size 8 wide-fits are getting depressingly snug, but at least they still look like feet. Big fat feet, yes, but they’re not twisted, gnarled messes.

But after seeing my rheumy two days ago and finding out that my ESR count is back on the rise again (50% higher than it was six weeks ago), and some other blood count is back in the ‘danger zone’, I’m just so effing fed up with all this.

Because of the test results, he wouldn’t reduce the bollocking steroid dosage. So the steroid bloat and sugar cravings continue. And every time I catch a glimpse of myself sideways in a mirror and realise that I am actually shaped like a barrel, I want to have a massive blubbing tantrum and smash everything I can lay my hands on.


Shoe me the money!

I wore heels for the first time in months last night. The occasion was the launch of The Limestone Arms in Kennedy Town, where I know a couple of the shareholders. It’s a great little bar with great food (Thai Thursdays!) and cider on tap. It was a good evening, primarily because ~ aside from politely declining drinks all night long ~ I only had to dodge the occasional conversation about RA and How Am I Coping.

It was a good opportunity to think about it, though, given that I try to avoid thinking about RA and How Am I Coping beyond the two tedious times a day when I have to throw a bunch of meds down my throat. Like Tuesdays, for example. Just last week, I sat there after dinner with a fistful of pills (12 this time) reaching for my mug of tea to wash them down, and suddenly stopped and thought, “f*cking hell, I’m about to throw 12 pills down my throat”.

(And that was only 12 for that particular point in time; count the morning meds and we’re up to 15. And there would be pills again on Wednesday. And Thursday. And the day after that, and the day after that. And so on and so on, literally ad nauseum sometimes. Wednesdays are generally sh*t because of the Tuesday night doses. On the plus side, steroids are down to 5mg a day and anti-inflammatories are… I forget. But less than before. ESR is also down, to the top end of ‘normal’, while kidneys/liver/blood/etc are fine. So we must be thankful. As I am.)

The sugar cravings are still off the chart, unfortunately, no longer quelled by a quick KitKat. Hair still alarmingly deciduous. But it’s my feet which are freaking me out these days. They are like shovels and I need shoes like canoes. From UK size 6.5-7, I’m up to an 8, preferably wide-fit. Otherwise my toes are all like “wth, dude”. Hence avoiding heels, because of the pressure that puts on my poor halluxes and interphalangeal joints (go on, click it, you know you want to).

Thing is, I like heels. They’re feminine and pretty and they make legs look longer and sexier. And god knows it’s hard to feel feminine and pretty and sexy when you’re gobbing pills and sweeping up handsful of your own hair several times a day. But, as Jane Fonda allegedly once said, no pain, no gain. So I took the pain and wore my knee-high suede boots and went and had a laugh, on my feet for over two hours.

The evening was also a welcome little slap around the head. I bumped into an old friend I literally hadn’t seen for years. The last time I saw him, he was walking painfully with a stick. This time, no stick, and he was looking fine. Turns out he now has a bionic hip, after agonising months of being told by doctors that it was just a pinched nerve in his back. And then I found out that someone I knew had recently passed away. She was just 41, and diagnosed with cancer three weeks ago. Three weeks.

The point is none of us knows how much time we have left; when it will be our time to go. So live life. The universe will throw sh*t at you, as it does at all of us. Maybe the universe is a grumpy orangutan in a cage whose only amusement comes from flinging dung. But whether we moan and complain about it, or wipe it off, have a laugh and carry on regardless… that’s a choice we can make. So go. Live life.