Saturday, September 28, 2013

I Know It's Been A While...

...And there's lots to tell. But the most recent events come first.

The most recent is that I've officially had Enough of dealing with metformin side effects and I'm back to dreaming about insulin. My blood sugars may be happier with the increased dose of met, but my GI system is NOT. I have an endocrinologist appt in just under three weeks. I'm not looking forward to the conversation I'm going to have with him.

The next most recent is that I had TWO (or three) airborne allergic reactions to nuts over the three day holiday we just had (actually, it was an eight-day holiday and only two of the three days I'm referring to were actually part of that holiday...the last was just plain old normal shabbos...and here is where things get too complicated to explain unless you're a religious Jew and know exactly what I'm talking about).

The first was on Thursday night. We went to shul (synagogue) for a holiday called Simchas Torah. Basically, in this holiday the men get to make utter fools of themselves and the women get to watch and talk to each-other.

A very important aspect (if you're a kid) of this holiday is getting small packages with candies and other treats inside. For years one of my neighbors made them, then we did for quite a while, followed by this year, when we said that enough was too much and my neighbor went back to doing it.

She used to just put in pretzels and a water bottle and some small things. This year she put TONS of things in, including a candy called nutty chews, which are the Jewish equivalent of Snicker's bars.

I'm airborne allergic to peanut...if it's being cooked. But that night, I started having trouble breathing within minutes of her having handed out the packages. My sister and I left, and we ended up going to a neighbor's house to have somewhere to go and something to do. (She and her son are both airborne allergic to nuts, so they left as soon as the packages were handed out.) I didn't take Benadryl (too stubborn) until about 12:30 that night, when my cough and shortness of breath disappeared within ten minutes.

The next night we went to the same neighbor's house (the one who made the packages, not the one allergic to nuts). She had made a bunch of salads, and they had nuts in them. I literally walked into her kitchen and couldn't breathe--that was all it took. I sat in her living room, took a Benadryl, and didn't say a word.

My sister thinks I'm out of my mind. Since when am I airborne to pecans and peanuts and hazelnuts and everything else? Therefore, in her mind, I must be making it up. It makes me terribly angry that I'm the only one around here who gets it. But it also scares me--because if my sister, who lives with me and knows I never leave the house within an epi-pen, won't believe me, then why should the server in a restaurant or the people I go to for meals?

I hate having a food allergy. I hate being neurotic and interrogating the people who give me food. I hate being that nutcase (no pun intended) who comes over sometimes and freaks out when there are nuts around. It seems so innocuous to everyone else--to me, it's literally deadly.

On Thursday, we went to the N's. We go to the N's every, single week--almost without fail. During holidays like this, we're often there a few times in the same week.

They threw a birthday party for my father. There was a cake, some fruit, and lots of little things like chocolate covered pretzels and trail mix.

If you don't have a nut allergy, you probably just skipped over "trail mix" the same way you did over "fruit" and "chocolate covered pretzels". My heart skipped a beat reading it over.

I couldn't believe that they had put out trail mix (with walnuts! my archenemy!) along with everything else. Like the chocolate covered pretzels coated in nuts aren't bad enough.

I sat at the other side of the table. When it was passed my way, I pushed my chair all the way to the wall. Thankfully, we were outside. I had a mild, mild reaction (enough to pretend that it wasn't a reaction) and I moved on.

These people don't remember--almost ever. I have to interrogate them every, single time I go over there. We eat there every week. How hard is it to remember that I could die if someone ate that stuff in front of me?

I had a bad experience in my favorite restaurant a few weeks ago. I ordered an eggplant rolatini, which I've had about a thousand times before. I cut it open, and there were little, green flecks inside the ricotta cheese, which I've never seen before in this restaurant.

I got up and asked the manager (who makes it his business to not only be nice to me but also go crazy over trace amounts because he has a strict "no dying in my restaurant" policy) about the green flecks. As I'd suspected, they were pesto. Pesto has nuts in it--usually pine nuts, but I've heard of walnuts being used. This time it was almonds.

He literally turned dead-white. This energetic, wonderful man nearly fainted just because I had green flecks in my food. This is someone who gets it.

I ended up getting a new order without pesto, no problems, no questions asked. The event chilled me for a day and then I moved on. This happens All. The. Time. I almost eat something I shouldn't, I don't, then I move on.

(For the record, he hadn't known there was pesto in the eggplant rolatini until he asked the chef. They changed chefs a few weeks ago and he still hasn't figured out what has been changed. He said that he was going to speak to the chef to go over what has which allergens in it. He will NOT let this happen again, as he has assured me. I trust him, so I believe him. It will not happen again. I can continue eating safely in his restaurant.)

But this is my reality. I live in constant fear of having a reaction. I keep epi-pens with me for a reason, after all. I read food labels. I'm careful.

But the people around me aren't. Many of the people around me have no regard for food allergies, no response to "you could have killed me", no second thought that maybe what they're doing isn't safe.

It's a ridiculous notion to them. I've even met some doctors who tell me it's no big deal. Like hell it isn't. It's the single scariest thing that could happen to me in a split second.

The scariest part is that this allergy keeps getting worse. I used to only be allergic to walnuts, and mildly so at that. It quickly progressed to peanuts and almonds, followed by, well, everything. Then I was airborne allergic to walnuts. Then hazelnuts. Then everything. What's next? Anaphylaxis from seeing a Snicker's bar?

There's a new (supposedly) miraculous allergy drug called Xolair. I might just go back to seeing an allergist to see if it's worth a try. To think that I might not have to constantly have my ears primed for hearing "nut" at the end of every word might be wonderful. It wouldn't be a cure--there's no such thing yet and I don't expect one in my lifetime--but it would be something.

And that's everything I'm putting in this post.

"If you're lost and alone/ Know you're sinkin' like a stone/ Carry On" ~Fun.


  1. I think for people without food allergies, it can be difficult to understand that someone can be feeling allergic even with no visible reaction. Even my family who totally gets it acts frustrated sometimes when I tell them I feel allergic. If they don't see me visibly wheezing or breaking out in hives, I can understand how they might not get it. They don't know how my throat and lungs and skin are feeling, though. Sometimes, for really mild reactions (just my throat feeling weird and skin itching, for example), it's even hard for ME to tell if I'm actually having a reaction or if I'm just imagining things!

    Good luck with Xolair, if you try it. I've known some people online who have used it and had great improvement. Have you tried allergy shots? I've heard they can help with overall "reactivity" sometimes. A few years ago a doctor said that when the body gets overwhelmed with allergens, it can start reacting to absolutely everything, which I think is true. When my allergies are really bothering me, my entire face and ears itch all day and clothing against my skin causes rashes, in addition to all the other typical allergy symptoms. My allergist (who I dislike, I need to find a new one) has recommended allergy shots for me, but finding the time and money is the hard part, so I haven't tried them yet.

    I'm currently taking four medications (Zyrtec, Symbicort, Nasonex, and eye drops I can't recall the name of), and the other day I realized that for the first time in years I felt like I didn't have allergies. Which is kind of sad. The Nasonex ran out a few days ago and I've woken up incredibly stuffed up the past few mornings. I worry that by taking this stuff constantly I'm making my body dependent on it, but the alternative is feeling miserable. I also notice my body tolerates infusion sets with much less irritation when I'm taking antihistamines every day.

  2. I also have trouble telling if I'm having a reaction. I have chronic shortness of breath--it is from walking outside when it's cold, or because there are nuts around? (Benadryl helps both, but I prefer not to fall asleep because it's cold outside, which isn't dangerous, just annoying.) I constantly get hives on my arm--allergy or my body's weirdness? Even when my throat gets tight, I have trouble telling because I have bad postnasal drip and that can make my throat feel tight, too.

    I had allergy shots for dust mites years ago. And according to my blood tests, I'm not allergic to any pollens (even though we KNOW I'm allergic because I react to pollen). Therefore, the only allergy shots there would be are for nuts, which don't exist (with good reason. If I can't touch the stuff, why are we injecting it under my skin?)

    I take Zyrtec every day, and my breathing has improved. I thought it had also improved my airborne allergies somewhat, but considering what happened last week, I'm beginning to doubt that.

    1. I actually used to be allergic to cold, in the sense that made it dangerous. Thankfully, I outgrew this, because I think it's one of the worst allergies to have. Cold air and cold objects used to just cause hives and swelling of whatever skin was in direct contact. I couldn't eat or dink refrigerated or frozen food because my mouth and throat felt like they were swelling. The worst reactions were when I tried to swim in outdoor pools (indoor was fine, as they're warm). Taking two Benadryl beforehand I could last 30 seconds before getting out covered in full-body hives. The one time I tried without Benadryl, I waded in waist-deep and lasted a few minutes of ignoring the hives before I collapsed and nearly passed out and had to be pulled from the water. (Even more scary is that the people with me assumed I was low, anaphylaxis was not even on their radar. I was too lightheaded long after being pulled from the water to communicate that I was having an allergic reaction, and for some reason people noticed the hives but it didn't clue anyone in to what was happening. I honestly think I'm lucky I didn't die.)

      These days I still get asthma from the cold, but no actual allergic reaction. I also get (mostly asthmatic) reactions from airborne exposure to cooking/steaming potatoes, and I get hives from skin contact, but I've never had a severe reaction from either of those things. The thing I don't like about my allergist is that he does NOT believe I have a severe food allergy, maybe because it's so rare. But I just don't feel safe with him.

      I've never had the blood tests for allergies, only the skin tests, which are positive for most of the things tested for. I also have post-nasal drip, and it's one of the things Nasonex helped a lot with. (It's really bad and drives me CRAZY during the day, I just hate the feeling of it!) The sad part is that if I miss one of my medications, I can definitely tell. Even the Symbicort, which I thought was overkill on my doctor's part, has really helped my breathing. I notice a pretty big difference when I forget to take it.

  3. You know, I know someone who was allergic to cold water for a summer. He said his family thought it was fun and put an ice cube on his arm to watch the hives grow their own hives.

    I've never had a blood test that said I was allergic to anything--only skin tests. But no one's really done an intensive look into what I'm allergic to since I was ten.

    When I see my pulmonologist on Tuesday, I want to ask her about something like Nasonex. I'd gotten used to it, but I think it's gotten worse and it's been driving me up the wall.

    1. I thought I was crazy until I asked my doctor in my final year of high school and he told me that people really could be allergic to cold temperatures. He just told me to take Benadryl before I went swimming and to not swim alone (which no one should do, anyway). I've since read that about 25% of people with this allergy experience anaphylaxis and that anyone who experiences rapid onset of hives with cold exposure should carry an EpiPen. But, like my food allergy, I never thought it was serious and no doctor never told me it could be. After the incident above I was terrified of cold water and refused to swim outdoors. In 2006 I tentatively tried swimming in freezing water, as I'd noticed cold hadn't seemed to bother me for the past few years, and I was fine. For me, it lasted from the time I was about eight until I was about twenty.

      I never had any kind of allergy testing until I was an adult, even though I've had allergy issues of one sort or another for my entire life. As an adult, my allergies seem to get worse every few years. I probably won't bother seeing an allergist again until I'm ready for allergy shots. I do have some weird allergies that seem to come and go. For a few months several years ago I swear I was allergic to almonds. And for about six months this past year I was having reactions to bananas. But now, both things seem to be fine. I don't get it. I hope it's not my body gearing up to develop a new allergy down the road.