It’s been less than a month since my Celiac diagnosis, so it feels sort of strange to write about it in this format, as though it’s already part of my history, but when I think about it I believe this…this, what? This disease – although it doesn’t feel so much like a disease – has formed a significant portion of who I am. For those of you unfamiliar with celiac disease, it’s an autoimmune disease wherein your body doesn’t recognize, or, perhaps a better way to put it, is your body really really hates gluten, the protein found in wheat, rye and barley, which gives things like bread their elasticity. Its symptoms can’t really be characterized because there are just so damn many of them, some of which I’m going to write about here but if you are interested in learning more you can go to celiac.com, which is a stunning wealth of information.
For most of my life I think it is fair to say I could be characterized as a somewhat anxious, high-strung person. I am more prone to worry than most people I know, and while much of that worry comes, I think, from my rather stereotypical first child, desire-to-please personality, a good portion of that worry has always been focused on my body and how it is, or is not functioning, to the point where other people viewed me as and I felt like a true hypochondriac. Some people move through this life with bodies rather impervious to the various mechanations the environment can wreak on it – but I am not one of those people. Examples:
If leaves are falling from a tree a mile away, I will break out in a rash from the one mold spore that caught a breeze and landed on my doorstep.
I get pink eye if I even look at a public pool where children have played.
For years, any sort of cold or flu or crud that was going around, I caught, and caught massively – while other people would shrug off the virus I would be out of work for a week. I do have to admit, though, that working in hospitals for so long has strengthened me in that regard…I don’t want to jinx it but I haven’t been that kind of sick since moving to Pittsburgh.
Food, reliably and regularly, has made me sick, all different sorts of sick – from classic upset stomachs to brain fog so thick I couldn’t add two plus two to heartburn that felt something akin to a chemical spill, and none of this even touches upon the overwhelming anxiety I so often experience.
In the last eight years (I believe my most upsetting symptoms began in 2001 while we were living in Wheeling, West Virginia) I have gone to the doctor for chest pain, stomach pain, rib cage pain, persistant, pushy rashes, general malaise and the just general feeling that something was wrong. I came away from the doctor with diagnoses of general anxiety disorder, panic attacks and just generally existing as a highly-strung individual. I also came away with lots of prescriptions for drugs to help with all of the above, most of which I never filled because I was convinced that if I just struck on the right combination of eating, exercise and relaxation I would be able to control the anxiety beast.
At one point, one of my doctors diagnosed me with a soy allergy, and I avoided studiously and fastidiously anything with soy. My nutritionist thinks I will be able, now, to eat soy just fine once I am properly healed.
Here is the thing, I guess. I remember going to slumber parties as a teenager with my closest girlfriends. We would gorge ourselves on pizza and breadsticks and brownies before moving on to whatever the hell it was we talked about – boys mostly, undoubtedly, but somewhere in between the festivities and falling asleep I would have these just awful panic attacks – panic attacks that included nausea so debilitating I couldn’t move. Sometimes I would share these attacks with my best friend, M, who would bring me wet wash clothes and talk to me until I fell asleep, and we both assumed (I think) that these attacks were just my nervous personality, showcasing itself in new and exciting ways.
I could continue listing a hundred different examples…how during graduate school I suffered the worst insomnia of my life and would literally stare out the window of our apartment for hours, fixated on seeing the sun rise over the horizon because then, at least, I didn’t have to pretend to sleep; how I never fully embraced trips with S. because at some point I was guaranteed to feel unwell, which I now realize is because of the cookies or pasta or beer I was enjoying and not because I am some nervous homebody who can’t stand to leave her nest; how even when doctors promised me I was just experiencing anxiety and stress I could never see that diagnosis within myself…I never felt that diagnosis was accurate, for me.
Over the course of the last decade, there were moments difficult enough that I considered not even attempting to try having children, because no child deserves a mother who thinks she is dying every month or so. At times, I thought about leaving S. not because he was unsupportive – he was more supportive than anyone has a right to expect but, as we all know, he rocks the free world, but because I was sure he deserved a wife who felt well, physically and emotionally.
But, you know what? A lot of that is over, now. Oh, I will still get pink eye if I share a public pool and I have no doubt cheap jewelry will always make me break out in hives, but even in the first few weeks of eating gluten-free, I can feel such a difference…a difference that avoiding soy or dairy never gave me. It’s going to sound stupid, but I feel happy – and it’s not like I’ve felt unhappy before, but what I feel is stabilized…if someone at work doesn’t like my writing, it isn’t the end of the world; if a song comes on the radio I particularly love, I turn it up and dance (hence the continous re-watching of the Beyonce seen in Glee a few weeks ago). The overwhelming sense of urgency I felt for so long has slipped away and in its place is a feeling I can only describe as mellowness, patience. Gladness. I am sleeping for long stretches…eight or nine hours at a time. When I told this to my mom she said “Well, honey, that’s a normal amount of sleep. What’s so special about that?” I had to explain to her how I rarely, if ever, got a full night’s sleep before now.
Right now I feel like I’m going through a period of healing. As I mentioned, I’m sleeping more than I ever have. I’m learning what I can and can’t eat and, equally as important, I am trying to teach myself new behaviors – a headache is not a brain tumor, a cramp in my leg is not a blood clot. I am learning to not overreact to every little thing. I’m looking at what is left of 2009 and looking at it as a time of recovery, not just recovering from the physical aspects of celiac but from the emotional ones as well, and I am looking extraordinarily forward to 2010, when I hope to be much less defined how I feel and much more so by what I accomplish.
And that is C, which is for Celiac.