My name is Matt. I live in Cambridge, Massachusetts. I'm really grateful to everyone who wrote about their experience on this site, as well as to Bob Connors whose site Sick Opportunity really inspired me.
When I was a junior in college in the northeast, I was rowing on the crew team and had a fall cross country skiing. These two data points constituted the red herrings that put the doctors off the scent for a few months, when I came in with acute back pain, until I got my ankylosing spondalitis diagnosis at a Harvard teaching hospital in Boston. I have never had anything but first-rate care, for which I am extremely grateful.
I took Naprosin for some time until Embrel came along. Before it did, toward the end of my time on Naprosin, I walked with my head glued directly to my shoulders like the tall guy in the Adams Family, and found it at times a bit much to take. It got me down. Enbrel, though, changed that, and I wasn’t Lurch anymore. I could get back into running and even swimming.
I still had to sleep with a bevy of pillows, and would catch my posture fleetingly and obliquely in reflecting surfaces, and be disappointed. I got Iritis. I often felt stooped over and weighed down, and could not ride a bike due to the difficulty of looking around in traffic. And of course, as others before me have pointed out, a burlesque fact worthy only of tragedy-comedy: I could not sneeze.
I considered all this par for the course, and did not have high expectations. I just was pleased that the pain was not excruciating 24/7, and I guess that other than that my karma was one of passive acceptance of my fate. I had become very Buddhist about suffering over the years, and more than a little resigned to life being less than one might have hoped.
That was before zucchini changed my life. I have to admit that zucchini had never been high on my list. In fact, it was very low, and while I was growing up, there was always much too much zucchini growing in our garden, and the desserts my mom would make from zucchini never completely disguised the fact that it was a big, green squash -- not dessert.
But then, in the subtle way that important things happen, I came to love zucchini, in much the same way that better men before me have come to stop worrying and love the bomb. OK, I’m joking about loving the bomb. But serious about zucchini, and other things like avocado, tuna, salmon, Greek yogurt and fresh berries, all of which were high on my list, even back in the day -- when baguettes were atop the list, me having spent some of my youth in France, et voilà. Zucchini meatloaf, zucchini fritters.
I know there is no generally accepted proof in the medical community, and I am just one person. My story will be necessarily and by definition anecdotal. But I am extreme, so when I decided to undertake a change in diet, I did so 100%. I’ve got that discipline, and a certain deep desire to exit the hospital predicament. The notion of real change being possible really whetted my appetite. So on August 2, 2011 I went no starch.
Granted, that is exactly four days ago. And I have been able to sleep a little longer on the weekend, without being chased from bed by that wild fire in the rib cage. It feels nice to linger a little, in that drowsy margin where pleasant thoughts mingle like dreams with the shadows and dappled sunshine outside the window.
Generally I am bookish but rugged, and definitely not the sort of person that is always complicating dinner parties with the latest alimentary regime they have discovered. But I can bring my total Greek yogurt and berries along, when the others are all embracing pizza.
Spondalitis is a grindstone tethered to your neck. If you thought someone was going to clobber you from behind, your upper back, shoulders and neck would stiffen, right? But what about being like that all the time, even when not at imminent risk of being clobbered? (Just because your paranoid doesn’t meant they’re not after you.) And that’s with Enbrel.
I’m really glad that people have gone online to write about this because it's easy -- at least for me -- to be in denial about the disease. Everyone’s got back pain, right?
Enbrel is a passive response. I used to want to close the shades when I shot it into my leg once a week, so the neighbors wouldn’t call the narcotics squad. It feels like heroin. When the pain in living is enough, out comes the needle. There is a despair to it, when you relish the pain the needle makes breaking the skin as trivial by comparison.
Enbrel was good enough until recently a local tick gave me Lyme Disease. Off Enbrel for two weeks to take the course of antibiotics, I had spondylitis pain like a medieval rack. My attention riveted toward AS, and I did some internet research, became aware of new things, engaged by the possibility of achieving a condition that was better than “good enough.”
So all this information about diet and the scientific theories behind it is new to me. I am trying to apply it in useful ways beyond my plans some day to obtain a snow-white standard poodle and name it Klebsiella.
It’s nice to be active in finding a solution. The body is not at war with you, it’s just confused. If it needs help eliminating a conflict -- a bacteria that ails it -- shouldn’t you help? Wouldn’t you help any friend in that way?
Stupidly enough, and perhaps like al those folks who impose on the dinner menu at the last moment with an alimentary curve ball, it makes me feel special to have a special diet. Swimming, stretching an other exercise ask something from my body (for its own good). But these foods are a special gift I can prepare, asking nothing in return. Cauliflower soufflé with cheese.
A friend of mine got hepatitis A this summer from eating shellfish. According to Wiki, the symptoms are “malaise.” Ditto for spondalitis, no? It’s just one big mal du siècle.
I have often described the disease like the feeling that someone was pushing your head from behind. It is nice to think that is may not be the hand of God pushing it, but just some baker or pastaman -- some acne-scoured pizza delivery boy you could have taught a lesson to long ago.
I wish I had know about this long ago, as I would have started much earlier. I learned about it last week, and embraced it. I have been thinking why I might have made another choice, and not embraced it. If I did that, I think the reasons would have been psychological. I have to think about this, because I am sure there will be times in the future I think of relinquishing this diet.
Probably the main reason not to try this starch-free lifestyle is a psychological one. If it actually does work, that opens up a host of other questions. Not least: why didn’t I do this long ago. Regret gets you exactly nowhere, and some experiences feed regret more powerfully than others.
Not to mention questions about the medical order in which one is, in every sense of the word, invested.
It also implies a responsibility. I am in fact part of the issue. It’s not just happening to me, but also through my own agency. I need to be accountable for the food with which I nourish myself, and assess its impact on this disease. I am the one doing this to my body.
But I see littler reason not to try it. Like I said, I think from the recent silence in my bones, that my body is not adverse to this.
Why wouldn’t I try it? If it turns out that I miss the old familiar pain like some Kurt Cobain or Elliot Smith song, I can always go back to the “gourmet” pizza.
Wouldn’t it be nice, in any case? The fountain of youth isn’t drink after all, but food. Or more precisely, not food.
Extremism by temperament, tempered by experience, optimally results in a certain realism. Despite my hyperbole about Ponce de León foraging in Florida for the youth fountain, I’m not looking for miracle grow here.
Instead, I am seeking a big picture that includes exercise, physical therapy, therapeutic medicine and diet. If diet can play a positive, albeit incremental, role in my spine’s wellbeing, then it is welcome at my table.
Thank you to all the inspiring people on this site!