Living with Food Allergies, 2013 and on

[MaryM]

space, that is awesome!!

[PurpleCat]

 

[LinksEtc]

Dd's pulmo advised against getting a cat b/c she tested + on a recent blood test ...

she is not happy ... she strongly expressed her disapproval of his opinion to him ...

then on the way home, she's saying stuff like:

This is a "CAT  astrophe"

just PURRfect.

I asked where she was getting this stuff from, and she tells me that she's a "copycat".

Then today, she starts arguing with me again telling me the doc is just making an "inference" from the blood test ... that there's no proof of allergy ... telling me that she wants a second opinion from an allergist.

The girl is 10 ... I didn't even know that she knew what the word "inference" meant.

Apple/Tree again. As I've said in the past, I deserve this.

She cracks me up.

------


Question for you guys ...

so it looks like dd has outgrown all IgE food allergies ...

still have related conditions like asthma, OAS, env allergens, & probable non-IgE allergy which seems to be a bit worse lately ...

I don't think that I have much to post about allergies, but this summer I'll probably start posting/writing about some general patient stuff ...

do FASers have a preference on whether I do that here or if it's best if I create my own blog or something ... or maybe a combo ... what is FAS policy of linking to your own blog if you aren't making any $ off of it? Feel free to dm me if you prefer. I'm still trying to figure out what I want to do now ... it seems that I need to write, I was kind of hoping that that feeling would go away ... but it hasn't.

[SilverLining]

I saw something that cracked me up today.

We went to a Jays game. I knew that today had a peanut free section, but we were not in it. (Actually, today I think there was a teen conference before the game with Kyle Dine, then they were in the of section.) Anyway, I must have been near it because when we were leaving we saw a sign for "peanut free bathrooms".

Now, I'm not judging....it's just not something I ever thought about and it cracked me up.

~~~

We had the perfect seats for a germaphobe and a food allergy sufferer. A wall behind us, stairs directly in front of us and end seats. I decided if the one person beside me went to eat peanuts I would offer to buy her something else if she would pass on them. She and the person with her did eat chocolate covered almonds, but that did not concern me. My concern was the peanut shells that end up on the floor.

[MaryM]

Glad you had fun at the game, SL!

While I was in DC on Saturday, DH finally (over a year after the allergist told us to try) gave DS baked Mac & Cheese.  He ate it without any issues!  Very exciting.  We will probably give him more on Friday.  DH will be away all week and I am still nervous about it.  Looks like he is really going up the dairy ladder though!

[GoingNuts]

SL, so glad you got to enjoy the game.  There's nothing like a good day at the ball park!

Mary, that is really something to celebrate!  Wonderful news. 

DS is in the middle of 1st year law school finals.  How is he planning to take a break to de-stress?  Walk to his local Shaw's to try to snag some A La Mode Shoppe ice cream!

[MaryM]

Hope he finds it, GN!  My local grocery store has been carrying it for about 6 months or so!

[spacecanada]

Oh my gosh, why do so many people still insist on giving Benadryl for food allergy reactions.  The new EE group I joined to ask questions insists on giving Benadryl at the first sign of an allergic reaction.  None of them have heard that Benadryl is no longer used for food allergies.  They all suggest I consult my allergist because they think I am doing myself harm for not using it.  I suggested they read Oakley Debb's story.   

[Mr. Barlow]

Links:

To answer your question, based on the two choices a blog would have greater indexing capabilities and therefore serve as the better platform.

I would like to suggest a third option: publications.  Blogging and social media is more of a platform for influencer marketing, and not really information sharing if you subtract the hype and tendency for human behavior towards justification and rationalization of progress (Cf. slacktivism, attention-seeking, self-branding).  Publication is more difficult, requires editing and putting yourself out there for potential rejection or criticism prior to reaching an audience.

A hybrid of publish + blog to distinguish yourself from a noisemaker to someone adding to our body of knowledge in a meaningful way might elevate your productivity past the perception of a hobbyist who in practical means really serves as a downline for better branded influencers.

For me and my circle we came to the conclusion our model is a modern think tank in one specific domain with the goal of journal publications.  Full on not-for-profit, build bios, conferences, papers, etc.

My personal ideal blog is Scott Hodes' FOIA blog.  IMMV.

[LinksEtc]

Thanks Mr. Barlow.

The thing is, with publications, don't you need a grad degree?

I actually found a masters/PhD program that I was really interested in and I applied in November, but did not get in. By the time I realized that I was interested, the app process was rushed. Judging from the quant score, my math skills are rusty ... plus, although I don't usually get insomnia, it struck the night before the test ... I probably got one hour sleep and was exhausted before starting ... even so, I got a 162 on verbal which was about the 90th percentile which was cool for a first try. I know that I could get the math way up (I used to do better with math than verbal) and do a better job proofreading the app, but for many reasons, I'm not currently applying elsewhere ...

although I tried to deny it to myself at first, I am interested in medical sociology & patient involvement in medical research ... I was not interested in these things before FAS, before the sesame advocacy ...

I would love to make a career out of it, get paid, do it in a formal way .... but for many reasons (some very personal), I doubt that this path will open to me.

One patient advocate that I mentioned in my grad app personal statement ... writing that she had "become an inspiration to me and I would like to follow in her footsteps" recently died by suicide. It breaks my heart. I didn't know her personally, but she was the one who got me thinking of sociology and she was kind enough to share the names of several academic papers that she thought might help me with the app writing sample.  I think that I will eventually post my app paper and the articles she shared with me if I create the blog ... I really see the value of the work she was doing ... I may not end up being able to personally contribute more at a professional level, but maybe it would help other patient advocates better build off of what she was doing.

With most medical conditions, I think of them in mostly clinical terms ...

With sesame, it was different.

I guess, at least with a blog, it's ok that I'm a bit of a misfit ... people are free not to read.

Thanks again Mr. Barlow.

[SilverLining]

Went to buy a product we have previously purchased. Beside it, same size and style box, same company, was another product with sesame seeds. I sent an e-mail asking if they run on the same line and does the company label "may contain" warnings.

Here is the response.

As part of our adherence to BRC accreditation (and CFIA), we have a robust allergen control program in place.  Among other things it includes separating raw materials, scheduling products - like with like - I.E. mustards run with other mustards when possible and both ATP sanitation testing combined with allergen swabs.  We don't use any "may contain" statements on our products.

I know that CFIA does not have any requirement wrt cross contamination labelling.

Googling BRC and ATP testing makes it sound like the product might be safe.

Allergen swabs mean nothing to me. I have no idea what they do if something tests positive...nor do I know which allergens can be tested for. Maybe they just shrug and say "better clean mire thoroughly next time" and send the product out for sale as long as it didn't test positive for listeria or something.

[spacecanada]

Also, to what level of detection is the test and what level of contamination would be considered a pass?

[SilverLining]

I decided this was a good example to forward to the CFIA to show what allergic shoppers are forced to deal with.

[spacecanada]

I just saw a photo on Facebook that one of our local airports (Nanaimo, British Columbia) has installed an EpiPen AND EpiPen Jr with their AED!!  This is such a huge gesture for a tiny airport.  I hope other local (and bigger) airports will follow suit. 

[spacecanada]

I decided this was a good example to forward to the CFIA to show what allergic shoppers are forced to deal with.

And how did you do this?  I submitted a very misleading label to them this week and they just cited that it met current labelling laws and there is nothing they can do.  I replied that the whole point was to demonstrate how their current rules are confusing customers.

And don't get me started on the unregulated peanut-free logo... Especially when accompanied with the words 'nut free' - what does it even mean then?  Sorry, caught in a labelling vent today after three irritating/misleading/confusing labels in as many days.