Ankylosing Spondylitis
Jeez, what’s wrong with your back?
I have ankylosing spondylitis, a form of arthritis that primarily attacks the spine and pelvis. For a while I thought that I might not have AS because evidence of disease didn’t show up in an MRI. My spine does not appear to be trying to fuse itself together, which is at least something. But a rheumatologist confirmed that I do have a form of AS; the lack of radiographic evidence does foreclose some treatment options, though. Diagnostic confusion aside, the bottom line is that I have to deal with quite a bit of pain, fatigue and reduced mobility on a regular basis.
Yikes! How did that happen?
I’m not sure. It’s possible that it was triggered by stress. The symptoms emerged when I was 25 (I was working on my Ph.D. at the time, so that was rather inconvenient). AS was the natural diagnosis, given the symptoms and my family history. (My paternal grandfather also had it; he lived to be 97.)
Where does it hurt?
Primarily at the sacroiliac joint, where the spine meets the pelvis. It also radiates up the spine. When I’m in flare (see below) I also feel it in my rib cage, wrists and ankles.
Is it always this bad?
It comes and goes. Sometimes I barely notice it’s there, and people who’ve seen me at my worst are surprised at how well I move and how energetic I seem. Sometimes it flares up so badly I can’t walk. (Most people don’t see me when it’s at its worst: I tend not to be able to leave the house.) People with arthritis tend to talk about “flares”—periods when the disease flares up for several weeks at a time, especially during spring and fall. If you hear me talking about being “in flare,” I’m in one of those periods. In general, though, I am in at least some pain nearly all the time.
Have you tried this treatment?
Many people, once they see me in obvious discomfort, try to be helpful and sympathetic by suggesting some form of treatment—meds that work for them, chiropractors, alternative medicine, a special diet. I appreciate your concern, but please knock that shit off. I’ve been dealing with this for more than 25 years and have heard it all. It can be exhausting to deal with ostensibly helpful suggestions from people who’ve just heard about what I have. Treatment is also highly individual: what works for one patient doesn’t work for another.
For more on this, see The 22-Year Anniversary of My Diagnosis, and Why I Don’t Talk About It as Much as I Might.
What can I do to help, then?
A little understanding can make my life a lot easier. Read “The Spoon Theory” to understand what it’s like for people with chronic illness. Don’t take it personally if I don’t seem sociable and lively at events (I’m also an introvert: I’m not bright and bubbly at the best of times). Don’t take it personally if I cancel at the last minute. Don’t make me bend, stand for long periods, or walk faster than I can manage. (Note that what I can manage can vary a great deal from day to day.) Offer me a seat. Never joke about it.
Book Reviews
I read a lot, and reviews many of the books I read. My reviews have been published by AE, Calafia, Strange Horizons and Tor.com; I also regularly post reviews on my map blog, The Map Room, and on this website. This section is for authors, publishers and publicists who want to send me review copies. I don’t usually ask for review copies, and I don’t object to buying my own books. If I’ve received a review copy and review it on one of my blogs, I note that in my review.
Can I send you a review copy of this book?
In general, yes. But keep in mind the following:
- My areas of interest are primarily, but not exclusively, (a) maps and cartography, (b) reptiles and amphibians, and (c) science fiction and fantasy. I also have some interest and expertise in history, science for a general audience and classical music. With some exceptions, the likelihood of my being able to review books outside those fields is low.
- Books about maps and cartography are reviewed at The Map Room. Please see The Map Room’s reviewing guidelines for more information.
- The timeliness of my review is contingent on my workload and health. I’m also quite backlogged (like, years) and may say no if I can’t get to your book in a reasonable time.
- I am generally not interested in reviewing self-published fiction.
- The phrase “in exchange for an honest review” makes my teeth itch.
- Review copies aren’t gifts, they’re work materials. I’m a reviewer, not a prize-winner.
When in doubt, contact me first.
Where do I send the review copy?
If you want to send me something via physical mail, courier or shipping service, please contact me to get my street address and phone number. For various reasons I don’t put my physical address online. I had to take my post office box offline because publishers kept trying to ship to it via DHL, and couriers can’t use post office boxes. So, to avoid confusion: just ask me for my address.
Can I send you an electronic version?
Yes. I can handle epub, Kindle and PDF files. You can send them to me by email at contact@jonathancrowe.net.
I’m also on NetGalley (under my first name dot my last name at Gmail).
Maps
Please visit The Map Room’s FAQ page. If you’re interested in sending me map-related review materials, please read The Map Room’s reviewing guidelines.
Photography
Can I use your photos?
Probably. Please contact me to discuss terms. I may or may not expect to be paid depending on what you want to use them for (see below), but I will always insist on being credited.
Weren’t your photos available under a Creative Commons licence?
They were at one point. On 29 July 2014, I removed that licence from my Flickr photos. I had selected a licence that required attribution and non-commercial use, but too often I found my photos circulating online without credit, or appearing in venues that I thought might not be non-commercial. (Editorial use seems to be a grey area.) So I gave up.
I’m under no illusions that “All Rights Reserved” will put a stop to infringement, but it might prevent some well-meaning edge cases. Or at least get people to clear it with me first. If nothing else, my photos won’t turn up in searches for CC-licensed content by people who don’t understand CC licence terms.
But I’ve been using your photos under that licence!
Don’t worry! You can continue to do so, so long as you started before July 29, 2014 and the terms of that licence (non-commercial use, attribution) are met. I have no intention of retroactively cancelling previously approved uses of my photos.
Under what circumstances do you expect to be paid?
In general I don’t object to your using my photos to illustrate your blog post, your hobbyist website, your class project, or your educational display, and will not expect payment for such uses. Just give me credit and a link back (see below). But I will expect to be compensated for commercial use. As for editorial use: in general I expect to be paid—and in fact have been paid—by professional publications, but not by amateur ones (such as fanzines and personal blogs). If you I know there are plenty of edge cases and grey areas. Ask me if you’re not sure.
How should I credit you?
Use my full name. If you’re using one of my Flickr photos online, link back to the Flickr photo page (that’s one of Flickr’s terms of use).
Can I get a higher-resolution photo?
I haven’t always uploaded to Flickr at full size, though the size at which I have been uploading has been getting larger over time. Contact me if you need print-resolution images. Note that my oldest photos (2006 and earlier) were shot with a three-megapixel camera, so there may not be a version with a high enough resolution for you.
Reptiles
If you have a question about garter snakes, please visit Gartersnake.info, which is dedicated to providing information about both wild and pet garter snakes.
I’m otherwise not really equipped to offer advice on how to take care of pet reptiles or how to deal with wild reptiles on your property, beyond what I’ve written on various venues. Neither subject is something on which I can offer specific advice over the internet.
Snake Identification
In a similar vein, I have to decline requests to identify snakes you’ve encountered. Your best bet is to try the Snake Identification Facebook group or the Snake Identification subreddit, each of which have people who are better at this than I am.
Website
Hi there! Would you be interested in selling advertising space on your website?
No. Die in a fire.
Hi there! Would you be interested in hosting guest blog posts from industry experts—
No. Die. In. A fire.
Recent Comments