Let's talk about anxiety

[twinturbo]

On the occasion it is attempted it has never persisted. I'm too prepared. Which has been pointed out by an attorney I spoke to that my method has a tendency to piss people off when I call bs. She wanted to cut a deal.

F me?

Oh, no. F you.

I tend to not internalize many things and I'm not sure if my unreasonably large ego has anything to do with it. Mainly I get annoyed when I feel there's some subjective tapdancing that gets in the way of goal whether that goal be my insurance covering the ambulance to ER, allergist bill, IRS deductible medical expense, 504/IEP. People getting in my way with distractive nonsense.

I've accepted the reality of life with LTFA. It sucks so suck up with a plan moving forward this let's contemplate how much it sucks and standardize how one is expected to emote is a time waster in my world compounded by crappy bias filled analysis.

Honestly, I've seen Sicherer in person, other FA parent traveled 10,000 km for an allergy congress, we already do all the gold standard stuff in tests and challenges. That's all there is to it for now. One thing I am not adding to my life list of to do is sit around kicking my own a** because ignorance without anything at stake abounds. Point that obsession elsewhere.

[Janelle205]

I don't know for sure... but I do know that DD has had pretty severe asthma symptoms (probably really anaphylaxis, not asthma per se) dismissed by others as "a panic attack" or as "anxiety" and told to control her breathing and RELAX.

Not helpful if it's actually asthma or anaphylaxis in progress, since knowing that you're surrounded by people who are ignoring your sense of grave danger doesn't exactly make you feel better about your odds for survival.   

  Not sure why that aspect of things never seems to occur to others who preach "mind over matter" with this stuff.

I'm pretty good at telling anxiety from asthma, and I hate it when people tell me to 'calm down' during a bad attack - I can't mind over matter my airway closing, but thanks.

I'm really used to asthma at this point.  When I talk to the camp counselors about asthma, I tell them that one way to tell if I am having an attack that they need to worry about is whether or not I look like I'm panicking.  Because I can stay really quite calm during pretty bad attacks.  But if I have the epi in hand and out of the case, or I look like I'm scared, you should probably be freaking out too.

[LinksEtc]

On the occasion it is attempted it has never persisted. I'm too prepared.

There was one time I was not expecting it.  It came from a place that was supposed to be helpful.  My emotional guard was down, my vulnerable side exposed. That's why I think it hurt so much.

Anyway, you all "get" it, understand it.   

TT, from what I've seen of you, I would not want to mess with you!!!

[twinturbo]

I eat my fair share of poop sandwiches like anyone else. Pretty and witty would get me further in life.

It's hard for us as moms to get the kick when we're most vulnerable (our children's LIVES). That's a truth no matter the source of the threat.

[LinksEtc]

It's hard for us as moms to get the kick when we're most vulnerable (our children's LIVES). That's a truth no matter the source of the threat.

Yes.

[LinksEtc]

I feel like we get hit in all directions.  On the one hand we get studies telling us we are too anxious and on the other hand we get studies telling us we (parents) are not vigilant enough (e.g. the Mount Sinai study showing the rate of accidental ingestion of allergens is too high). 

I find it frustrating to hear doctors say anaphylaxis is "rare" and parents should be "reassured". 

I was thinking more about this.  I'm not sure if you had this study in mind, but these are 2 interesting blog posts about the recent "FA deaths are rare" study.

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"If food allergy deaths in food-allergic individuals are rare, do we change our ways?"
http://foodallergysleuth.blogspot.com/2013/12/if-food-allergy-deaths-in-food-allergic.html

The study authors certainly have noble intentions of this study reducing the anxiety faced by food allergic individuals or their caregivers.

"FOOD ALLERGY: A LOT IS RIDING ON OUR TIRES"
http://www.allergyhome.org/blogger/food-allergy-a-lot-is-riding-on-our-tires/

For me, their findings convey the unlikelihood of a fatal anaphylactic reaction if appropriate management strategies are implemented, and provide me with some reassurance.

(FWIW, I liked the way he framed this.)

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Also, ana itself does not appear to be rare:
"ANAPHYLAXIS IN AMERICA"
http://www.aafa.org/display.cfm?id=6&sub=110&cont=882

According to the peer-reviewed study, anaphylaxis very likely occurs in nearly 1-in-50 Americans (1.6%), and the rate is probably higher, close to 1-in-20 (5.1%).

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One thing that differentiates food allergy from some other health issues is that the outcome seems to be so dependent on the daily efforts of patients/parents.  With some diseases - you get a good doc, take medicine, but the outcome is largely out of your control.  With FA, we know that the majority of reactions can be prevented, but it takes such constant vigilance which can be stressful.  Plus, we have incomplete or sometimes incorrect labeling information to work with which, I think, is part of the reason FA people are so active online (which manufacturer/product do you trust type conversations).  There's a million little risk-benefit calculations we do.

[LinksEtc]

We are our kids doctors for the most part.

TT, I can delete this post if you'd like ... I think all of us oldies completely get where you're coming from here, but newbies might take this the wrong way.

[LinksEtc]

I can fight these in a 504 scenario with hard counters. I can show the school empirically that no one is free of either anxiety or free of emotion in decision making, males and females alike. Can most parents do this without specialized knowledge on the fly during 504 process or at a doctor's office? A little unfair to the unsuspecting.

I don't know if I made any more sense but I'd be happy to later post definitions of bias types, external validity. I'll spoiler them to conserve space no point in everyone scrolling half a mile.

No rush TT - I hope you are enjoying the holidays.  I'm just taking this thread in.

Are there any simple strategies to nip the "mom is just anxious" thing in the bud that you could share so the rest of us could keep them in our back pocket?  I've only had this problem with a couple of people, but once it gets started, it seems it can snowball. 

Yes, that explanation made more sense to me.  Thanks.

[Linden]

I was thinking more about this.  I'm not sure if you had this study in mind, but these are 2 interesting blog posts about the recent "FA deaths are rare" study.

----------------------------------------------------------------------

"If food allergy deaths in food-allergic individuals are rare, do we change our ways?"
http://foodallergysleuth.blogspot.com/2013/12/if-food-allergy-deaths-in-food-allergic.html

The study authors certainly have noble intentions of this study reducing the anxiety faced by food allergic individuals or their caregivers.

"FOOD ALLERGY: A LOT IS RIDING ON OUR TIRES"
http://www.allergyhome.org/blogger/food-allergy-a-lot-is-riding-on-our-tires/

For me, their findings convey the unlikelihood of a fatal anaphylactic reaction if appropriate management strategies are implemented, and provide me with some reassurance.

(FWIW, I liked the way he framed this.)

----------------------------------------------------------------------

Also, ana itself does not appear to be rare:
"ANAPHYLAXIS IN AMERICA"
http://www.aafa.org/display.cfm?id=6&sub=110&cont=882

According to the peer-reviewed study, anaphylaxis very likely occurs in nearly 1-in-50 Americans (1.6%), and the rate is probably higher, close to 1-in-20 (5.1%).

Yes, these studies and others.  I thought I saw another study that found a 40% rate of anaphylaxis among allergic children - maybe it was 40% had severe reactions?

[LinksEtc]

Yes, these studies and others.  I thought I saw another study that found a 40% rate of anaphylaxis among allergic children - maybe it was 40% had severe reactions?

Hmmm, I'm not sure about the 40% one, but this blog post references a few beauties:

"The Snarky Sociologist"
http://www.asthmaallergieschildren.com/2013/07/30/the-snarky-sociologist/

Well, at least in this, it was not just moms targeted!

"Your kid doesn't have an allergy to nuts. Your kid has a parent who needs to feel special" Stein blamed the epidemic on overreporting, then found out the hard way when his own son suffered anaphylaxis to tree nuts.

[LinksEtc]

I'll put this in here also ...

Nutritional behaviour and attitudes to food in allergic children.

[CMdeux]

I can fight these in a 504 scenario with hard counters. I can show the school empirically that no one is free of either anxiety or free of emotion in decision making, males and females alike. Can most parents do this without specialized knowledge on the fly during 504 process or at a doctor's office? A little unfair to the unsuspecting.

I don't know if I made any more sense but I'd be happy to later post definitions of bias types, external validity. I'll spoiler them to conserve space no point in everyone scrolling half a mile.

No rush TT - I hope you are enjoying the holidays.  I'm just taking this thread in.

Are there any simple strategies to nip the "mom is just anxious" thing in the bud that you could share so the rest of us could keep them in our back pocket?  I've only had this problem with a couple of people, but once it gets started, it seems it can snowball. 

Yes, that explanation made more sense to me.  Thanks.

Links, my strategy with such people is two-pronged, if you will:

a.  note this carefully and realize that they have an axe to grind-- their disbelief makes them dangerous.  I will NOT leave my child in such a person's hands without me being present to run interference and triple-check safety.  Even now, if I get this kind of "vibe" from a person, I hear that Star Trek red-alert noise in my head, and I tell my DD to watch out for this person-- and why.

b.  Present fact.  Not opinion-- fact-- which is incompatible with statements that they've made to me, or the underlying beliefs that are likely to be behind them.  Then ask innocent-sounding questions about what they think that means...  Yes, this is slightly manipulative.  I don't mind.  It also takes time to let them churn on it, as often as not-- and THAT, sometimes I do mind, because it can be seriously inconvenient or stressful.  But I have never ever had a person that didn't-- eventually-- see it my way. 

For example, when my DD was about four, my mother and I got into a major argument over why I wouldn't let my DD eat watermelon that she had sliced up in her kitchen and brought to my house.  "It's not house policy" wasn't good enough.  So I bullied her using the kinds of quantities found in research papers on threshold doses (at the time), asked her just HOW confident she was that she had not used anything nutty in her kitchen within two days.. three days.... longer?  Just HOW sure was she that a microscopic crevice in that container wasn't harboring any egg residue?  Pointed out that DD reacted very significantly even to steam-cleaned lines used to make pasta... and then I asked her how she'd feel if she were wrong.  Would it still feel "worth it" to her then?

When she was five, her allergist espoused the opinion that sending her to school would be "work, but feasible."  He simply didn't believe in aerosol-provocation of systemic reactions.  I knew that he was wrong in DD's case, but no amount of MY opinion was going to budge him.  So I bided my time, and let him SEE that I wasn't crazy or over-reactive.  I graciously told him that we'd have to agree to disagree, because I knew what I'd seen.  We did reach common ground in that he conceded that any environment which was THAT contaminated was probably an unacceptably high risk for eventual inadvertent ingestion anyway, and so it was a good sign to "vacate the location" even if he didn't think that inhalation was a real "risk."  In and of itself, I mean.    I must say that my DH's skepticism a year before that hadn't done much to help my relationship with the allergist at that point in time, either.  Another story, that one.   

After four years of immunotherapy injections, he and his office staff had seen enough weird and impossible things from her that they believed me.    Completely.  Of course, I think that it also has helped that he now has had the personal, delightful experience of turning over a kid with about three times DD's threshold to a school setting, too... so he gets it now in a way that he seriously just couldn't wrap his head around previously.

Bottom line, I find it unhelpful to get angry.  I wouldn't be ANGRY if my cat were unable to unlock the deadbolt if I locked myself out of the house, after all.  Ignorance isn't malevolent.  Mostly, with food allergies, ignorance is fueled by two things:  1.  previous anecdote that is counter to what they are hearing from me, and/or 2. sound bites or media reports from research studies that offer an "average" snapshot.  The latter is only helpful if your experience happens to be roughly average.  Otherwise it is distinctly UN-helpful.

[CMdeux]

And I never have said "I told you so" to another person over this.  Never.

They are already feeling sheepish.  I catch their eye, perhaps, just to emphasize that "Hey-- THIS is what I've been saying to you all along," but I don't hold it against them when they finally have that epiphany.

[LinksEtc]

Bottom line, I find it unhelpful to get angry.  I wouldn't be ANGRY if my cat were unable to unlock the deadbolt if I locked myself out of the house, after all.  Ignorance isn't malevolent.  Mostly, with food allergies, ignorance is fueled by two things:  1.  previous anecdote that is counter to what they are hearing from me, and/or 2. sound bites or media reports from research studies that offer an "average" snapshot.  The latter is only helpful if your experience happens to be roughly average.  Otherwise it is distinctly UN-helpful.

Your posts have been in my mind the last few hours as I was doing some errands.  It may take me a while to respond to various things.

ok, this point you made - excellent.  I don't usually get angry - I agree that it tends to be unhelpful.
I'm not proud to admit that one incident pushed me too far and I did feel angry.  I think I still had some of those negative residual feelings which this therapeutic  thread will help me to fully get rid of. 

[LinksEtc]

But I have never ever had a person that didn't-- eventually-- see it my way. 

Somehow, I believe that  .  If you'd ever like to come visit me, there is someone I would love for you to meet  .