To Medical Alert…Or Not

Hello fellow allergy sufferers!

I have been remiss with this blog as I have been concentrating on my other blog, A Broad Abroad (pattiobrien.wordpress.com), but I have been thinking lately about my journey with salicylate sensitivity and wondering how everyone else is doing.

I now wear a “medical alert” bracelet that doesn’t look too medical but has the words “aspirin allergy” etched into it. I got it when I was headed over to Ireland, in case I had a heart attack or something and someone tried to put an aspirin under my tongue and kill me inadvertently.

This image is like my bracelet: I like it because it doesn’t LOOK like a medical alert bracelet and so doesn’t make me feel a hundred years old! I got it online at etsy.com, a site where artisans sell their wares, and have been very happy with it. If you’re thinking of getting one, don’t go to a pharmacist; look here and pick one that fits your style.

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I do worry though, about stopping an EMT, say, from saving me from a heart attack; maybe I wouldn’t react too badly to the aspirin. Maybe it would save my life. Maybe the heart attack could be curtailed. Maybe I’ll die someday because of this friggin’ bracelet…

Or not. Maybe I’d have survived the heart attack without the killer aspirin, but would have died from anaphylactic shock. Who knows? Luckily, it didn’t happen…but it could, someday, and I just can’t figure if this bracelet will save me or kill me.

A friend of mine in the healthcare industry says that EMTs are trained to look for these bracelets, but may not recognize mine as one because it’s not standard. Also, it’s almost always flipped the wrong way, the important part laying flat against the inside of my wrist, so they really might not even see it.

Whatever. I’ll just let fate decide: if they see it and save me anyway, yay! If they see it, don’t give me the life-saving aspirin and I die, oh well; if they don’t see it, give me the aspirin and I survive, well that’s the way it was supposed to be. And if they don’t see it, give me the aspirin and my face blows up like a blowfish (it’s happened before), then maybe they’ll recognize what’s happening, shoot me up with Benadryl, and I’ll live. It’s a three out of four chance of survival. I’ll take it.

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So, having survived so far–being diagnosed nearly a year ago–I can say I feel much better than I did. I was definitely on overload back then, eating almost nothing but organic fruits and veggies, drinking lots of wine, having tea, using spices, drinking caffeine…and my body was a mess! Healthy eating makes me sick–another sufferer has even written a book by that title! Salicylate Sensitivity is a weird, strange, frustrating ailment, but I’m here to tell you that it can be managed. Once I started eating differently and avoiding all the “wrong” foods, I started to feel better, the hives went away, the joint pain went away, the facial swelling stopped. I believe now that my liver was “toxic” as my Ayervedic doctor said, because it was overwhelmed with allergens. I envision it saying “Look, I am trying to tell you something, now I’m just gonna break you out in huge hives because you’re not listening!”

I’m listening now. Someone described the problem like this: it’s a bucket. Once you start filling it up–by eating salicylate-laden foods–it’ll react. But the reaction “limit” is different for everyone, so you just have to work it out for yourself. I can eat a few things on my no-no list before I react: others are not so lucky. Some people have huge reactions to anything that has even the tiniest bit of salicylate and suffer from migraines, stomach problems, etc. I think I’m one of the lucky ones in that I break out in hives or just itch before I have bigger problems; it’s like a warning: okay, you’ve had a handful of strawberries and a glass of wine, so stop now before I really cause you trouble!!

Sometimes I react and am not sure what to: the blueberry muffin yesterday, the beer from the other night, or some hidden spices in a restaurant soup? Detective work is a big part of figuring out what we can and cannot eat, but I have discovered that the bucket idea is right on the money, and so I pick and choose what “bad” foods I will eat by the day.

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Going to a party? I’ll skip a morning OJ, skip the turkey sandwich (all luncheon meats have salicylates), drink only decaf; then, I can have a few beers and not have to worry. If, however, I haven’t been too good during the day, one beer may put me right over the edge. It’s all a game…but there is no winning.

If we SSers want to stay feeling well and able, then we must avoid so many of the foods that others enjoy willy-nilly. When we have our Hell With It moments, we suffer. It’s as simple as that. So, we learn to drink vodka, but we miss our Pinot Grigio. We forego the luscious fruit salads and stick with the potato chips, which only sounds awesome: I can eat all the crap I want, but that’s not really good. This “healthy diet” for us isn’t healthy at all.

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What to do…what to do. Fuck it. As the oft-misquoted Marie Antoinette said:

Let Them Eat Cake….but have them read the ingredients list first because they may or may not be allergic to something in the mix.

Sigh.

No Advil? No Way!!

Salicylates. Ever heard of ’em? I guess I had, but didn’t really know what they were until the allergy doc said he thinks I’m allergic to them. He thinks it’s what’s causing my lip and facial swelling.

You take Advil? he asks, knowingly. Well yes, doctor, yes I do. I take Advil. Every day. Sometimes every four hours. I live on Advil. LIVE ON IT!

Well then, he says, leaning back in his chair the way men do when they’ve just been validated. Stop the Advil.

Oh sure, no prob– WHAT?!!! But I LIVE on…oh. I get it.

Since I have been covered in hives for months, my lip often looking like botox gone bad, it stands to reason that something I am doing ALL THE TIME is causing all these problems. But Advil? Oh my, this just got ugly. er.

So, what is a salicylate anyway? It’s “a salt of salicylic acid;” that enough for ya? No? Yeah, me neither, but it’s all we got. It’s like aspirin and it’s everywhere! So, the first thing to go was aspirin and all things aspirin-like: Advil, Alka-Seltzer, Midol and Pepto-Bismol, for instance. But that’s just the beginning.

Here I was, trying to eat healthier, and all I was doing, apparently, was making things worse b/c salicylates are in: almonds, apples, apricots, black-goose-rasp and strawberries, cherries, currants, grapes, nectarines and peaches, oranges, plums. Beware of raisins, prunes, cucumbers, pickles and tomatoes, too.

WHY? Beats me, but there’s more: they are in soda, tea, gum, antiseptics, cider, vinegar, and in anything containing artificial flavors and coloring: ice cream, cake mixes, jams, hot dogs, all luncheon meats…J-E-LL-O, for goodness sakes!

But it gets worse. Salicylates are in WINE, BEER AND ALL DISTILLED DRINKS except Vodka.

Well, bring on the Cosmos! But don’t let me drink too many b/c, you know, I can’t take an Advil when I get home. Oh, and I also can’t brush my teeth with toothpaste or swish with a nice, minty mouthwash. Brush your teeth with baking soda and salt, they say. No thanks, I say…I’ll take my chances.

Actually, after a few days of no toothpaste (the brushing action is what really cleans your teeth anyway, according to research), I decided that was something I couldn’t do without. I use it sparingly and rinse really, really well. So far, my lip has maintained its normal shape and size, which is great, b/c for awhile I was afraid it was my morning McD’s mocha and THAT I really can’t live without.

SO, if you’re having trouble, ask yourself if you’ve reacted to perfume (yep), felt itchy after eating cloves (yep) or started to swell from a lozenge (yep). If you have, you might have a salicylate allergy and I’ve just saved you $500 in allergy testing. Don’t go in and try to get shots, you don’t need them. Just cut out the offending foods for awhile and see if your symptoms abate. Then, to test the theory, re-introduce them, one at a time, to see if you swell up/hive up/itch yourself silly.

Another thing to remember is that these type of food sensitivities tend to flare up during bad allergy seasons, as this spring has been. In the dead of winter, you just may  be able to chug-a-lug to your heart’s content and remedy a hangover with your favorite anti-inflammatory. That is my fervent wish for us all.