kate_schaefer: (Default)
[personal profile] kate_schaefer
I am allergic to a cubic whackload of things that humans customarily eat: shrimp (and all its kin and a bunch of things that aren't particularly related to it besides, lobsters and langustinos and crabs and crayfish and sea cucumbers and snails and slugs and squids and octopodes), cashews, melon, wheat, lamb, mangos. I'm allergic to things that are naturally in the air we breathe: grass pollen, birch pollen, maple pollen, alder pollen, scotch broom, ragweed. I'm allergic to things that end up in the air we breathe because of industrial processes: gasoline fumes (which I sometimes perceive as smelling like expensive perfume), expensive perfume (which, yes, sometimes smells like gas fumes to my nose), cheap perfume, most soaps, most detergents, asphalt, formaldehyde. And if you burn almost anything, odds are good that I'll react to it, although so far I'm okay with charcoal (no lighter fluid, please) and well-aged firewood (but I won't stand directly in the smoke). Also cats, dogs, ferrets, and undoubtedly giant pouched Gambian rats.

It might seem as though the reasonable reaction to all these allergies -- so many allergies that my allergist stopped testing me, because what's the point if I react to everything? -- would be to live in a bubble. I don't want to do that. What I did for many years was to take Claritin (and then generic loratadine) before getting up every single day, reduce the amount of dust in my house, and rotate the foods I ate with a fanaticism usually associated with divine inspiration and funny hats. For good measure, I also wore funny hats.

This didn't keep me from being miserable when trees and grass had unnatural congress in my nose or from withdrawing hastily when innocent people who had washed their clothes in ordinary old detergent got too close to me, but it did allow me to interact with the world in a reasonably normal way most of the time. Sometimes I'd have to cancel an engagement because I just couldn't breathe outside my house (my house: land of air filters, unscented cleaning products, and no carpet), but most of the time you'd hardly know about the great big scarlet A for Allergic on my chest. That is, you know about my scarlet letter, because you're my friend, and the ushers at the symphony know, because they've helped me change seats when people sitting nearby are wearing clouds of cologne, but strangers passing on the street don't know.

Since February 2007, I've been going through a different allergy regimen. I no longer take loratadine. I don't rotate my foods. I still wear funny hats and I still try to keep the dust levels way down. In addition, I now get a shot once every two months. This shot is supposed to retrain my T-cells so that they don't overreact to ordinary harmless substances. In the few days around the shot, I eat an eccentric restricted diet (fish, venison, rhubarb, yams, the outside leaves of lettuce or cabbage, cooked carrots, cooked celery, sea salt, parsnips, white potatoes; that's it. No fat, no fruit). I stay in my room and avoid, not just everything that I know I'm allergic to, but everything that I could possibly become allergic to while my T-cells are being retrained.

During this period, I watch a lot of movies, because I can't read new books (could become allergic to the fresh ink), old books (might be musty), newspapers (too dusty), or magazines (fresh ink). I can read middle-aged books, and I have a supply of those carefully set aside, though sometimes their ink turns out to be too fresh because they haven't been read enough yet. Sometimes I really can't read the middle-aged books, because a few hours after the shot, I start going through allergy symptoms in rapid succession (hives, flushing, confusion), and I just can't concentrate on reading.

(I've gone on writing rather longer than I meant to. This is all introduction to reviews of the last set of movies I watched during an allergy purdah, as I prepare for my next allergy purdah. I'll post those reviews later.)

Date: 2008-06-19 01:21 am (UTC)
From: [identity profile] vylar-kaftan.livejournal.com
What's in this shot, do you know?

And are you allergic to R.O.U.S.'s?

Date: 2008-06-19 01:50 am (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Here's the most coherent account of this treatment I can find on the web: http://www.food-allergy.org/epd.html. This is the key sentence: "While trying to eliminate nasal polyps by injecting them with the enzyme hyaluronidase, Dr. S. Popper serendipitously discovered that patients’ pollen allergies were eliminated, although their nasal polyps remained. Further research showed that an enzyme which was a contaminant the hyaluronidase, beta-glucuronidase, plus extremely low doses of allergens, was responsible for the desensitization."

The enzyme comes from garden snails, and the treatment was discovered by accident while trying to cure something else altogether. This is a whacka-whacka treatment, and if it didn't work, I'd make fun of it. Come to think of it, I do make fun of it, even though it works and improves my life.

Rodents Of Unusual Size? Probably, but I suspect that if they showed up in my life, there would be other problems besides the allergies.

Date: 2008-06-19 01:55 am (UTC)
From: [identity profile] jaylake.livejournal.com
You know, beating cancer was easy compare to living with this level of allergic sensitivity. It's amazing what I take for granted...

Date: 2008-06-19 04:33 am (UTC)
From: [identity profile] kate-schaefer.livejournal.com
I think of it as being no more work than those who keep kosher ordinarily go through. Okay, no more work than those who keep kosher while living in a society with very few others who keep kosher ordinarily go through. It's work, but it becomes routine very quickly.

Date: 2008-06-19 02:15 am (UTC)
From: [identity profile] wordweaverlynn.livejournal.com
Oh my God. You have just given me hope.

I list my food allergies on the first entry in my LJ, but I don't bother with the environmental ones. Allergic to everything, yes.

I need to check this out and call my allergist.

Thank you.

Date: 2008-06-19 04:40 am (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Celery? You're allergic to celery? Wow.

There aren't a lot of allergists who give this treatment. It's either totally loony tunes, or cutting edge. Since it works for me, I vote that it's cutting edge. You do have to be disciplined to make it work, but with your list of allergies, it's probably as worthwhile for you as it is for me. The allergy tech at my allergist's office says she isn't disciplined enough to use this treatment, even while she administers it to others all the time. What I think this means is that she isn't as bothered by her allergies as I am by mine. It's work to create the environment in which the treatment has a chance to be effective, but it's so much more work just to stay alive all the time, just to decide whether it's time to use the epi-pen or take Benadryl or just wait it out. I know you know what I mean.

I figure that even if it didn't work for the reasons it's supposed to work, I create a little window every month in which I stay in as allergen-free an environment as possible, and that has to be good for lowering the allergy-bucket.

Date: 2008-06-19 03:59 pm (UTC)
From: [identity profile] vylar-kaftan.livejournal.com
The shots still seem to be the best method for folks like me, who have only a few severe non-food allergies. But this method may soon become standard for people who need this option.

Date: 2008-06-19 02:35 am (UTC)
From: [identity profile] singingnettle.livejournal.com
Oh, good heavens.

And I thought my life, combined with ihgreenman's, was complicated...

Date: 2008-06-19 04:41 am (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Your life is complicated. Mine is just differently complicated, and I can't have cats any more. I miss cats.

Date: 2008-06-19 07:50 am (UTC)
From: [identity profile] singingnettle.livejournal.com
We probably shouldn't have them either...but we will anyway.

I'm sorry to hear that you have to put up with that particular set of complications.

Date: 2008-06-19 02:24 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Thanks. During my cat's last five years, I changed my shirt every time I picked her up. Fortunately, she didn't really like to be held. What she liked was to hang out nearby while I gardened, and every once in a while to come over and do the head-butt thing that meant she wanted her ears scritched.

Date: 2008-06-19 05:40 pm (UTC)
From: [identity profile] singingnettle.livejournal.com
A lid for every pot, as they say...my former housemates had/have a cat that didn't want to be touched at all. She would follow you a bit and very occasionally ask for something and sometimes do the rolling-over-in-front-of-you thing, but mostly she was just beautiful and entertaining to watch. Once in a long while she'd ask me to pet her for a bit. The one time I remember her being a contact-cat was one day when I suddenly got very, very sick with a very high fever and spent the day literally passed out on the couch, and every time I opened my eyes a bit, my cat was sitting on my head and the other cat was sitting on my feet. Every so often they'd switch positions and once in a while they'd both sit on my stomach and look at me. They didn't leave until evening when one of the other humans came home.

Myst was made of Velcro, though.

Date: 2008-06-19 03:09 am (UTC)
ext_28681: (Default)
From: [identity profile] akirlu.livejournal.com
I'm glad you went on. I understand rather more about your allergy purdah process now than I did before, and I find that interesting. (This may be a variant on the principle that no personal disaster is so bad that you can't get a fanzine article out of it...)

Date: 2008-06-19 04:43 am (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Thanks. For this to be a fanzine article, it would need to have a higher proportion of funny hats and fewer lists. A good fanzine article, that is.

Date: 2008-06-19 03:40 pm (UTC)
From: [identity profile] randy-byers.livejournal.com
I disagree. I think this is the basis of a good fanzine article. Post the movie reviews, add them to this introduction, and submit it to Chunga. G'wan, we've wanted to get something from you for eons!

(I'm a big fan of lists, and your lists are just as funny as your hats.)

Date: 2008-06-19 05:07 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Thanks. Let's see if I can get the movie reviews up in a reasonable period.

Date: 2008-06-19 04:52 am (UTC)
From: [identity profile] dsgood.livejournal.com
My allergies vary. I've stopped being allergic to blueberries, chocolate, and cats. Still allergic to various kinds of pollen and probably house dust; but with prescription meds, it's manageable.

Date: 2008-06-19 02:19 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Yes, if your allergies are few enough and specific enough, they can be managed relatively easily. It's the general reactivity that is so maddening.

Date: 2008-06-19 04:54 am (UTC)
From: [identity profile] holyoutlaw.livejournal.com
I've been dubious about some of your efforts to lower your allergy bucket (as you say) but this seems to be working better than most. Congratulations!

I'd be happy to lend you some of my movies, if you think that would work.

Date: 2008-06-19 02:21 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Thanks, I think I'm set for movies for this time. I'll keep the offer in mind for the next time, though.

Date: 2008-06-19 06:05 am (UTC)
From: [identity profile] chiefwirehead.livejournal.com
So - can you tell yet whether this magic wonder allergen regime is helping?

Also: we knew someone who was very allergic to American perfume - couldn't walk through the ground floor of most big department stores without nearly going into anaphalactic shock (I'm sure that's spelled wrong).

But: French perfume? no problem. They use a different base or something, and it didn't bother her (she did some postgrad work in Lyon, so she could tell...)

Date: 2008-06-19 02:18 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
A lot of French perfume is made from essential oils; oils steam-distilled from scented plants. American perfume is almost all petroleum-based, which sets me off. I'm not allergic to attar of roses. I am allergic to lavender, and lavender-based perfumes. I like lavender, but alas, it goes. At this point, I've ripped out all but one stubborn lavender plant from my yard.

Yes, this magic wonder allergen regimen is helping. I am able to tolerate quite a lot of inhaled allergens without getting ill now. I can tolerate the smell of coffee without gagging now (coffee! One of the world's best smells, but I don't think I'll ever enjoy the smell again after years of gagging). I can stay in a hotel without becoming incoherent with allergy brain-fog. I can't act like a normal human being, but I feel better than I have in years, and I no longer take loratadine.

Date: 2008-06-19 07:57 am (UTC)
From: [identity profile] dsmoen.livejournal.com
I hear you -- though I'm not that allergic, thank ghu.

I too react to ink!
And soap! (laurel and laureth sulfates)
And wheat!

But I'm glad I can have shrimp and cashews, preferably together. :)

Date: 2008-06-19 02:11 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
I used to eat shrimp and cashews, and I was just fine. As it happened, we had set up the rotation so that they were never on the same day (we rotated everything: protein, vegetable, fruit, starch, oil, nut, spice). Cashews belonged to the chicken day; the fish and bugs day had almonds. One day, I ate shrimp and cashews together. They were delicious. Shortly thereafter, I had to take huge quantities of Benadryl and spend a bunch of time talking to the triage nurse, who was not very experienced with allergies. She helpfully told me I could use my epi-pen, or I could go to the ER, or I could wait and see. Since I was still conscious and able to make decisions, I opted for Benadryl and waiting. When I talked to my allergist the next day, he told me that if I ever felt just like that again, it was time to use the epi-pen, and I could never eat cashews or shrimp or their relatives again. Never is a long time, you know?

I know someone who felt odd after eating nuts, and while she was debating whether she felt that odd, she passed out. Fortunately, she revived and was able to call 911. One of the many problems with allergies is that if they don't actually kill you, you can think, this must be all in my head. I shouldn't make a fuss. It's not that bad.

I make a fuss. I'm still alive. Gosh, if I'm still alive, I must be making too much of a fuss....

Date: 2008-06-19 03:04 pm (UTC)
From: [identity profile] waywardcats.livejournal.com
One of the many problems with allergies is that if they don't actually kill you, you can think, this must be all in my head. I shouldn't make a fuss. It's not that bad.

I make a fuss. I'm still alive. Gosh, if I'm still alive, I must be making too much of a fuss....


This is precisely my issue with my wheat sensitivity. It is very easy to just eat what's available around me that contains wheat and accept the consequences. But I have to remember the risk is that the consequences could get much worse without warning.

My allergies are similar, though not so many or severe as yours.

Soaps
Fragrances (shampoos especially it seems)
Cigarette smoke
Tomatoes (raw only)

I have just stopped taking the Loratadine because I found I was too dry all the time. So far I haven't had a problem, but it could be just luck.

Good luck with this program, it sounds as though it's working well enough for you to bear the discomfort it causes you in the short term. I hope it really works well in the long term.

Date: 2008-06-19 06:31 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Thanks. It's a lot easier to find food without wheat than it used to be, because there are enough people with sensitivities to constitute a real market. We've found a good rice pasta with a ridiculous name, Tinkyada Pasta Joy, and there's a baker at a local market who bakes all-rye and all-oat bread, both of which I can eat.

Good luck back at you.

Date: 2008-06-19 09:39 pm (UTC)
From: [identity profile] waywardcats.livejournal.com
It is getting easier everyday it seems. I often buy my wheat-free stuff at Trader Joes. (They have good brown rice pastas.) And I've recently discovered that I can buy a lot of items in bulk through Amazon and save money.

I tend to avoid oats because I have occasionally reacted to them also, but if you know the source, perhaps you can avoid the cross-contamination that is the issue with oats.

Wow!

Date: 2008-06-19 05:57 pm (UTC)
From: [identity profile] jinasphinx.livejournal.com
I'm glad that treatment is working for you. A wide set of allergies makes daily life so complex, so anything you can do to reduce the set, even if it's whacka-whacka, seems good to me. "Allergy purdah", what a great term.

Re: Wow!

Date: 2008-06-19 09:21 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Thanks. Yeah, I go back and forth on the complexity: it's just a routine, no more complicated than remembering to wash your hands after changing the baby and before feeding him, versus it's hella complicated, I am a rockstar of detail orientation.

Thanks

Date: 2008-06-19 07:07 pm (UTC)
From: [identity profile] mcjulie.livejournal.com
Your travails make me more tolerant of my own naughty little histamines.

Re: Thanks

Date: 2008-06-19 09:23 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
And your naughty little histamines fill me with shock and awe whenever I wonder whether I need to take something seriously.

Date: 2008-06-20 06:43 am (UTC)
From: [identity profile] mareklamo.livejournal.com
Wow! I'm glad you're not allergic to rice, but that's just because I can't imagine not eating rice.

Glad the shots are working for you.

Date: 2008-06-20 08:39 pm (UTC)
From: [identity profile] kate-schaefer.livejournal.com
Yeah, the rice allergy would be a pain. Glenn used to be allergic to rice, but after a year of the treatment I'm on now, that allergy went away. More evidence that it works.

Date: 2008-07-01 05:39 pm (UTC)
ext_28681: (Default)
From: [identity profile] akirlu.livejournal.com
Ah, that's what I was looking for. I wasn't sure if the regimen was helpful with food allergies and that sounds like it can be. I told Jon Singer that he should talk to you about your current regimen because he hasn't been in touch with his/your allergist in a while, and I was at least somewhat hopeful that what you're doing would also be of possible help to Jon. I'm sure Jon's life would be better if even some of his food allergies could be eliminated...
Page generated Jan. 22nd, 2026 01:41 pm
Powered by Dreamwidth Studios