Here a Hive, There a Hive…

hive on hand

Can you see that? It’s a hive in the middle of the palm of my hand! I mean, really?

Really. WTF?

Fellow sufferers, you know what I mean, right? Here I am, sitting in my living room watching the dregs of summer tv and perusing the ‘net, when I start to itch. First it’s on my thigh, high on the inside, and it comes out in two huge hives. Does that happen to you? The itch before the hive? That’s how it goes with me. Then, the palm.

I start the investigation: what did I eat today to cause these hives? The question of why they pop up where they do is one I might never be able to answer; I mean, really, two inner thigh hives and one palm? How does that make ANY sense at all?

Anyway, I go through my day: eggs and a cinnamon roll this morning, yeah, cinnamon is high on the salicylate list, but I don’t think three hives would pop out all of a sudden nine hours later, right?

Then, since I don’t eat lunch (b’fast is kinda late for me), I had a lovely lentil/chicken/carrot concoction I made last night for dinner. It’s so healthy and I think those are all safe, tho maybe not…but again, I didn’t break out right after I ate that.

I did, however, break out about half an hour after having a Root Beer Float.

rbYep, it’s the RB. Damn. Even tho EVERYONE says not to “drink your calories,” it’s what I do. I’d rather drink them than eat them. True story.

Anyway Salicylate Sensitives…this is just one of many mistakes I’ve made recently that have had me pretty hived up all summer!

And the worst part is I don’t cheat eating the healthy stuff (tho I do sometimes, have blue- and strawberries, which I suffer for); for the most part, tho, I’m cheating with wine and soda and hot dogs even. I only have myself to blame.

Ah…now the back of my right shoulder is going…I feel the itch, I feel the big bump under the itch. When–and WHERE–will it end? It’s anyone’s guess.

I look it up: lentils and chicken, negligible. But carrots are moderate.

Root Beer: okay, not on the list, although I know most sodas are. I’m looking it up on http://www.salicylatesensitivity.com and you can, too. It’s tough, at first, to keep it all straight but it gets easier.

Eventually, you’ll learn that almost everything healthy is bad for you and lots of other stuff is, too. If you’re an SS, let me know what’s up with you…I wanna hear what you do, what you don’t do, and how you keep it all together.

Because I am also allergic to aspirin, I live in fear of pain. I’ve been getting headaches and take Tylenol Sinus and Congestion, or something like that, and it works. But Tylenol itself doesn’t work for pain. Have you found something that does?

Let’s work together here…and I’m hoping to hear from Patricia in Ireland. Tell me what you’ve done so far, Patricia, and how you’re faring!! Cheers!

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.