Living with Food Allergies, 2013 and on

[CMdeux]

^ Yessirree.

Riffing on what Ninja stated-- we live in a SUPER small town-- and we do run into our providers just out and about living here.  He knows that I help moderate/administrate an online support group, and he knows that I tend to post (re-post) interactions with him-- and that sometimes I'll ask questions that I'm specifically going to post about, etc.

He has occasionally-- and VERY judiciously-- used that knowledge to leverage wider visibility for something that was a professional need on his part-- such as the plan to scrap allergy coverage in the state children's insurance coverage a few years back.  I posted his comments directly along with his request to contact state legislators about it. 

Pretty sure that such a thing would not be permitted now under the more Draconian "communication center" operating under centralized control.  It kind of seems more and more as though that particular org would be HAPPIEST with telemedicine with a ten second delay, so that they could "edit" doctor/patient interactions more effectively.    

Ahem.

I'm quite confident that Dr. Awesome knows who I am, and where to find me online.  I've never ever, ever cyberstalked Dr. Awesome (not even a little), and as far as I know, he's never cyberstalked me, either.    As ninja notes-- I don't want to stare into that abyss, and I also don't want it looking back-- which is why I still protect my anonymity online, and I don't FB.    There are things that I'm happier not knowing about a physician that I need to seek treatment from.  There are some things that I feel so strongly about that they'd be deal-breaking for me personally, even-- and I appreciate it when a physician understands that our professional relationship needs to stay within certain boundaries.  So as I noted, he knows where to find me.  Don't think that he HAS very often-- but I'm pretty sure he's peeked a bit over the years.  Enough to know that nobody gets away with saying anything crazy here, and that we're pretty pro-AAAAI party-line.    We're evidence-driven, mostly.    I think that reassured him enormously, and it let him know that I really am not using social media (even here) to question his professional judgment, etc.

[Macabre]

Well, I can't imagine a physician would likely friend a patient on FB. I don't think FB figures into this equation at all. However, FB does provide a great resource for physicians to get information out to the general public and their patients as a whole via their page. But it's not like they can really creep on patients on FB that way anymore than they could elsewhere if they were so inclined.

Twitter is a different animal altogether. And if your allergist were on Tw, you could follow him and it would just not be the same as cyberstalking. In fact, allergy practices want their patients to follow them. It's a way of getting out information. And is simply part of living in the 21st Century IMHO. 

[ninjaroll]

I would think the biggest concern for any profession that has oversight from an industry operated ethics board and must be insured for malpractice has legitimate concern if social media use by a patient poses a risk on that front.  So, unless you're jeopardizing that relationship at a high enough threshold you may safely proceed to use the internet.

Think about this in terms of your time and cost, Links.  The doctor isn't your boss, he or she is a service provider and should be professional enough to keep it at that level of interaction consistent with their discipline's ethical bylaws.  Quite frankly, having seen the direction that Sicherer has taken of late I'm not sure we'd go back to him.  Knowing my position on things, I'm sure that perspective would be mutual.

And is simply part of living in the 21st Century IMHO.

This says it all. 

[GoingNuts]

What's going on with Sicherer?  Just curious.  Elder DS went to him years ago, and we loved him.  But alas, he's not on our insurance.  We also love his colleague, Dr. Nowak.

[ninjaroll]

He's a great doctor and with the exception of one resident all of Sinai is great.  My personal opinion is I don't think Sinai is on the top of the heap of research institutes at this point in time, which is natural because you can't be the leader forever.  The cost to see him is significantly higher because we would have to travel out of state at which point for the total investiture I have to compare him to other accessible options like Stanford.

The main abstract flaw I find in his research to which I disagree the most is his tendency to generalize to an entire population, and the sort of conclusions that reach the public become very distorted when one is not a stickler for keeping limits, validity at the forefront.  That distortion continues in a recursive fashion until it solidifies in the public mind is a dangerously skewed 'truth' that he doesn't seem to be cognizant of.

In short he's become more of a researcher who practices than a practitioner who researches.  I don't think he's got the right distance to maintain balance for proper dialogue and since I'm about 1,000% sure he cares diddly squat about my opinion I have to make a choice to continue to go without in other areas in order to allocate considerable travel funds to see him as a patient.  If I were local to Jaffe I might just pick Nowak.

Sometimes it feels like he's no longer in the driver's seat behind his research.  I don't know if that translates to him taking a larger administrative position over the facility.  Sinai doesn't have that cutting edge I think it had 5 years previous.  I'm looking at Stanford's Parker Center in the near future.

[LinksEtc]

I'm going to take an online break (really) ... yeah, there are a few loose ends, but I'm feeling mostly "done" if that makes sense ... did what I wanted to do w/ the sesame labeling & pretty much said what I felt needed saying.


Seems healthier if I back off for a while ... this whole Links/mom, public/private divide is a bit much lately, too intense & emotionally draining  ... get more balance, boundaries ... concentrate on IRL stuff.  I'm sure the doc stuff will be fine ... she's very kind & professional.



       

[CMdeux]

 


Completely understand, Links. 

[Macabre]

Living with FAs: sometimes when you have an interview the next day and you have a lunch meeting at a new restaurant, you avoid eating anything, because you need to know you won't be incapacitated by a reaction.  And even though you detest Pepsi products, you order a Diet Pepsi instead of Iced Tea, because the risk for XC is less with it. 

[PurpleCat]

I did a lot of yard work today.  DH will be shocked.  It was that or baking and I don't need the calories so I opted for the great outdoors to work out my stress.

DD flew for the very first time today!  She's with my sister and they flew Southwest.  I know before they took off she met the pilot and they had no trouble pre-boarding.  I got one quick text a short time ago that they landed and she loves flying!

I am done working outside, relaxing with an iced coffee.

It's been a good day living with food allergies.

[PurpleCat]

DD had a great and amazing day at Discovery Cove yesterday and they were fantastic with her allergy issues both when she was dining/snacking and when she visited exhibits of concern like the aviary.  When I spoke with their dietician last week, she even offered to go out and buy anything special DD would like to have while there.  She had plenty of safe options so that was not necessary, but wow!  What an offer.  I sent them a thank you email this morning.

Sea World will be tomorrow.

[spacecanada]

  PC!

[PurpleCat]

DD just texted me.  They are about a half hour away.  Sea World was a success.  Plenty of food options.  Her flight home today went very well too.

It will be interesting to hear how my sister fared dealing with allergies.  I have wine chilling for her.

[CMdeux]

Glad that it all went off without a hitch, PC!

[spacecanada]

Woohoo, PC!

I reflected today on how my allergy experiences have caused two large organizations to overhaul their food allergy procedures.  And Disney was one of them.  That's some powerful stuff.  We are making a difference here. 

I just booked a tour through Disney for our upcoming trip and encountered their allergy protocols for tour participants, the ones developed after a dangerous near miss with my meal during a tour I took in 2012.

 

[CMdeux]

   Sometimes those trips down memory lane are sweeter for knowing that they mattered.