Saturday, June 18, 2011

Baring it at the pool--or on Facebook

So Hidden B did something evil. Not only did she go away for a five-day-four-night trip to a conference in Denver (thus leaving me to deal with the kids) but she signed them up for swimming lessons AT THE SAME TIME on Saturday mornings, which means (because she works Sats) I have to take them both. Oh boy what chaos. No parking at the pool so we have to park in the neighborhood and schlep over; then the changing room is full and there's no place to put anything down; Shmoop ends up in the wrong class, and Voov is in tears because her new flipflops are pinching her toes.

Of course neither of them is actually going to learn to swim. (Voov is only two, so I have to get in the pool with her and try to convince her to blow bubbles. That would count as an achievement.)

And afterward--moisturizing Voov or myself? In that situation, with Shmoop tearing around investigating the urinals and lying on the floor and pulling all the lockers open? Forget it.

One benefit of the chaos is that I could care less whether people notice that I have eczema. I just want to get out of there with both kids alive and all the crap we came in with, and they don't know me anyway.

I've never been keen on the water. Maybe it's because I was born on the prairies. It took me forever to learn to swim. These days I would like to swim because it's great exercise but, ironically, I found out that swimming is bad for my back. Should have done it while I had the chance!

And then there's the eczema. Ever since high school I've avoided letting other people see me anything but fully clothed. Most of my friends and coworkers probably don't know I have eczema, although they must have noticed that I'm twitchy and scratchy. I would prefer that they not find out, because there's no benefit to me. Their reaction would range somewhere from "so what" to "that's disgusting."

That too is a shame, because I would like to connect with people like myself--on Facebook for example. I know the NEA has a Facebook page and I check it out every once in a while. I see that people have problems like my own and children like my own. (Some of them ALSO TYPE IN ALL CAPS FOR SOME REASON and some of them are selling quack remedies, but fortunately not all.) But, because most of my Facebook friends don't know I have eczema--I have about 175 "friends" and apart from my wife and brother and sister none of them are clued in--I am not about to participate on the NEA page, because I don't want my Facebook friends to see comments that I write on the NEA page. That would be too much information for them. Just as it would be for me if someone was writing comments about their inflammatory bowel disease.

So I wonder whether there's a social-media way for the NEA to connect with patients and to enable them to support each other. I can't be the only one who feels uncomfortable writing openly about my eczema under my real name in a world where everybody can see everything all the time. It's like being naked in a public place like a swimming pool.


  1. Hi there,

    Thanks, as always, for your GREAT (caps intended!) posts. NEA does in fact have a private, anonymous community. Please join! National Eczema Association Inspire Support Community


  2. Cool. Thanks for letting me know, Julie.

  3. Hi Spanish Key-
    quick question for you- is there any knowledge as to why they put peanut oil in vaccines- it is highly refined, but because of the very significant increase of peanut allergy (anaphylactic) in the 1980's, and growing ever since-is there any consideration that there might be a connection? They have high incidence of sesame allergies in Israel (where they use sesame oil in vaccines) do you ever hear of this in your science circles?
    thanks - sorry about the pool! they can be traumatising for a plethora of reasons-

  4. Stephanie, thanks for the question-- I plead ignorance! Did not know there was a peanut component to any vaccines. If so, it's probably an adjuvant. I searched PubMed and found virtually no papers on the topic (an internet search reveals some mysterious "adjuvant 65" in influenza vaccine, but the sites discussing it seemed conspiracy-oriented).

    I would guess that, because there are almost no papers on the topic, and because scientists everywhere are looking for problems to solve (for their own benefit, to bring in grant money) and some of these scientists thrive on controversy (the journal Nature recently ran a feature on the one prominent scientist who thinks that prions don't cause mad cow disease) that peanut components of vaccines are a non-issue.

    However, since I don't know much about vaccines I'd prefer not to discuss them unless the reason is related to eczema. The next time I find myself talking to an expert (on eczema/vaccines), I'll bring the subject up.

  5. Hi there!
    I realize that I forgot to put my references I had come across, that I thought you might be interested in. When I first heard it, I thought it must be a conspiracy theory myself.
    One is a study - and I thought the date was interesting as it is the year that peanut allergies really started to take off -1980(pubmed article)

    then second one is a molecular medicine publication-

    I thought it was a very interesting read. Page 4 is where the ingredients, but the whole thing is quite interesting to see how it all works-but they see even themselves page 19 "that adjuvants mechanisms are not well understood".
    I bring this up here, because I thought it would be interesting to see if there were a connection with eczema, an inflammatory response to a possible vaccine- then the unsuspecting consumption of the allergen. If it was started by the vaccine- and it be adjusted, or changed, or we at least know what is causing it?Science seems at a loss.wouldn't that help or save a lot of people, possibly? Might help to see what is in the vaccines and what you might be reacting to?

    less official but still there

    I thought it was unbelievable notion as well(conspiracy) because it just seems too outrageous since all the anaphylaxis. I see all those wacky websites (antivax usually) but I never see a real live scientist talk about it- that is why I asked you! Not that one would have to be a expert, but at least know some background in the sciences- and have an opinion.
    thanks again

  6. Dr. Lynda Schneider at Children's Hospital Boston has done some research related to vaccines and eczema. She may know more.