May 2013 Living With Food Allergies Blog Carnival

Source: http://www.thequotefactory.com/quote-by/joseph-joubert/the-aim-of-argument-or-of-discussion/9241
Image Source

The last time I hosted the Living With Food Allergies Blog Carnival was in July of 2012 so here we are almost a year later and I get to do it again!  Thank you to Jennifer B of Food Allergy Buzz for allowing me to take part again.  Last month Lindsey from Frugal Food Allergies featured some great posts.  My lead image for this post is a nod to the contemplative theme of many of this month’s submissions and to the different perspectives we share with one another through blogging.

I’ve created a Pinterest Board for the carnival (if a post had an image, Pinterest won’t let you bookmark something if it doesn’t have at least one picture that Pinterest recognizes so that also explains the random images for a few posts) as well to make it easy to re-pin your favorite posts for future reference!

The categories I’ve used below are just a fun way to group submissions but I hope you check them all out, regardless of where I’ve grouped them.  Thank you to all that participated in the May 2013 Living With Food Allergies Blog Carnival.  To submit your blog post to the next edition, use the following carnival submission form.

In the Know…

Chef Froggie (who recently graduated with her bachelor’s degree, congratulations!) has been concerned for some time that her memory has been faltering as a result of anaphylactic reactions and was sure to share her findings with the internet at large in her post Consequences of anaphylaxis: memory and processing issues at her blog, Gluten Free Froggie in the Kitchen.  This is something I’ve found especially in the food allergy community – the concept of sharing a difficult experience or diagnosis so that the next person up late at night googling their symptoms can find the right questions to ask their own doctor.

Courtney J covers a lot of ground in her post Food Allergy Q&A 1 at The Random Ramblings of a Stay at Home Mom.  Her daughter has 24 food allergies and as her mother, Courtney gets asked a lot of questions.  Her experience being the advocate for her daughter hits very close to home.  I, too, had doctors write us prescriptions for skin creams instead of addressing other possibilities for terrible eczema.

Jennifer Kales wrote Food Allergies and Allergic Teens: Taking the Next Big Step as she contemplated another birthday for her daughter at The Nut-Free Mom.  Jennifer writes about helping teens “navigate their new independence with regard to food allergy management.”  Seeing a photo of her daughter’s 6th birthday cake even as she turned 13 in February of this year brings home how fast things change and the importance of being ready to have the discussions with our kids that they need depending on their age and maturity.

Jenny Sprague at Multiple Food Allergy Help has two posts for this month’s carnival, Examining Educational Options [part 1] and The Food Allergy Bloggers Conference.  Her little boy, Jacob, has had cancer, deals with multiple food allergies, uses a feeding tube, and also has Eosinophilic Esophagitis (or EoE) but even with so many challenges he wants to go to school.  In her second submission, Jenny shares how the Food Allergy Bloggers Conference came to be and why you should all plan on coming!

Karen Blue selected Varicose Vein Products That Contain Nut Oils for this month’s carnival – it is posted at Chemurgy and Allergens which is an amazing resource regarding allergens in more obscure places.  As Karen writes, this is “another reason to always be aware of what is in products.”

Tim Burns, a fellow geek, attorney, and dad of a boy and girl, writes in his post BEST PEANUT ALLERGY FRIENDLY TEAMS IN MAJOR LEAGUE BASEBALL at A Geek Daddy.  I think the more we talk about peanut free baseball options and get the food allergy community out in support of them, the more they’ll be offered.  Or at least that is what I hope.  Tim writes with his submission: “Our family loves enjoys cheering on our favorite baseball team the Detroit Tigers, but unfortunately we can rarely go see them play at their stadium due to the risks and dangers presented by my daughter’s peanut allergy. While not perfect, some Major League Baseball clubs have made an effort to work with the peanut allergy community to make their games more accessible to fans. I’ve provided my opinion of the best clubs providing peanut allergy friendly options and links to find out more information about going to a game if you or a family member are impacted by peanut allergies.”

Keeping Epinephrine at Hand…

Missy Berggren wrote no more excuses: get *FREE* Epi Pens through the end of the year at her website Marketing Mama – it made me wish the program had been in effect when I had our prescription for the year filled but hopefully those of you with upcoming expiration dates on their injectors can take advantage of it.  Especially families that need multiple injectors!

Caroline Moassessi, one of Nevada’s stock epinephrine champions, submitted Allergy Anaphylaxis Playbook by Jerome Bettis! posted at www.gratefulfoodie.com.  She, and other bloggers, got a chance to interview Mr. Bettis and look over some of the materials associated with his “playbook” being offered through Sanofi (makers of Allerject in Canada and Auvi-Q in the United States).  Caroline has very high praise for the guide.

Joanne (Food Allergy Assistant) submitted her post EpiPen With Zero Copay at Food Allergy Assistant, being sure to add with her submission, “May I also mention that the Auvi-Q website has a $25 co-pay? I just want everyone who needs an auto injector to have access to one!”  I think the competing companies in the marketplace right now have to realize how excited the food allergy community is that any promotions may put injectors into the hands of people that need it the most.

Of Labels and Labeling…

Colette Martin covers yummy treats on her blog but also delves into other aspects of food allergies, such as with her recent post Learning to Eat Allergy-Free: What the Proposed Gluten Free Labeling Laws Might Mean for Families with Food Allergies at Learning to Eat Allergy Free – Multiple Food Allergies.  Some progress in labeling laws relating to gluten free products may not be a boon to wheat allergic individuals and Colette has the scoop.

Kate (who goes by the name “Ana Phylaxis” on her blog) submitted Ana’s Thoughts: Food Labels. Seriously? from her blog The Diary of Anaphylaxis – she points out a label she found that indicates, without specificity, that there may be allergens not listed in the ingredients present in the food item.  What do you think?  Should manufacturers be able to exclude allergic individuals with blanket warnings?  Do we want to purchase their products if that is their mindset?  A lot to think about!

Something to Eat…

Ashley Nicolei of LiveLoveManja offers a restaurant review in her tumblr post entitled Manja Review: Kitchen Door Napa, Local Seasonal & Handmade.  Uniquely, Ashley’s review is written in the third person and expresses her gratitude for the accommodation of her nut allergies.

Stacy Molter offers two milk free and nut free recipes for the blog carnival – Chocolate Chip Sunbutter Pudding Cookies Recipe and Apple Pie Spice Bread Recipe posted at StacyMolter.com.  Stacy’s 2 year old recently outgrew his sunflower food allergy and that inspired her cookie creation while her spice bread recipe is a novel spin on apple pie flavor.

Something to Think About…

Daniella Knell at Smart Allergy Friendly Education addresses something that I’m sure comes to mind often when dealing with food allergies in her post Stressed About Navigating Food Allergies?  She advises people: “KNOW YOUR NEEDS… then FIGURE OUT YOUR RESOURCES.”  The post breaks down a way to approach your food allergy related stress with smaller tasks to tackle.

Jennifer B.’s post Can Caregiver Mishandling of Food Allergies Equal Medical Neglect? at Food Allergy Buzz raises the issue of caregivers giving allergens to children intentionally.  Is an allergy diagnosis effectively a prescription for avoidance?  And if a caregiver doesn’t comply, are they being careless or is it medical neglect?  Jennifer poses some difficult questions mainly because it is hard to imagine willfully putting a child without a choice of what to eat in harm’s way.

Lacy Wade submitted Making it Milk-free: Different is Perfect. {A post about removing the voice of negativity.} from her blog Making it Milk-free.  In her post, Lacy talks in part about some of the common comments parents of children with food allergies hear, such as suggestions that they just homeschool their children.  She wraps things up with great suggestions for being more supportive of those in your life that may be struggling.

Sara Gooley’s post Agree to Disagree on Maddy’s Seven Year Itch is where I discovered the quote that appears at the top of this post from Joseph Joubert.  Sara closes with the quote but her whole post is well worth the read and it spoke to me because even in the generally supportive food allergy community our words can be harsh and critical of one another even without realizing it.  Sara writes also in the post about OIT, or Oral Immunotherapy.

Selena Bluntzer makes a clever commentary in Amazing and Atopic: Study Shows Allergic Children Born to Loving Mothers posted at Amazing and Atopic.  Satirizing the studies that seem to barrage us each week with some other potentially guilt inducing proclamation about how our children might have become part of the food allergy epidemic, she reminds us that mothers, fathers, caregivers, and anyone that cares about someone with food allergies loves them.  This would make a great series, Selena!

Finally, there’s my own submission for the carnival is my post entitled Food Allergy Awareness Week 2013 here at Oh Mah Deehness! – I cover some of the advocacy activities (Nevada’s stock epinephrine law, the FARE walk, the first ever Food Allergy Bloggers Conference, etc.) that I’ve been engaging in as well as a bit about our current food challenge journey.

First Quilt Square

I have making a quilt on my “bucket list” (posted originally here, I probably should update it actually) and have been doing bits of sewing and crafting since then.

I’ve even been acquiring fabric for my imaginary someday quilt but never made the time to get started until now.  On twitter, Libby, who blogs at The Allergic Kid, pointed people following the #foodallergy hashtag over to the Arizona Food Allergy Alliance’s “Squares of Friendship” page and the story of Arizona teen Adrianna Aguirre.  AFAA writes:

Adrianna accidentally ingested peanut while at a friends house in Spring of 2011. She was without oxygen for several minutes. She then was in a coma for over a month. Today Adrianna is slowly improving and able to communicate by blinking her eyes. We have hope for Adrianna and would like to show her our love and support. 

Together we will create a quilt through AFAA’s Squares of Friendship. AFAA will collect donated squares and sew a quilt to be given as a gift to Adrianna. Submissions need to arrive by May 31, 2013. Details below. If you know of someone in the community that is in need of an AFAA Squares of Friendship Quilt, please emailinfo@arizonafoodallergy.org, they need not reside in Arizona. We support those in need of this program, worldwide. Thank you!

My first thought was for Adrianna’s family and friends as well as the young lady herself.  I can’t imagine what they must all be going through.  The idea of a quilt made up of well wishes resonated with me and I told my mother in law (she and my sister in law are my quilting Jedi Masters, Yoda and Obi-Wan to my Luke Skywalker – and yes I probably whine as much as he did too!) that I was ready for her to teach me the ways of the force quilt.

“Cut even squares” and “right sides together,” were her initial guidelines.  Okay, I could do that (or so I thought).  I used my rotary cutter (I’d been stocking up on supplies for three or four years) and it looked okay to me.  I was using flannel I had been using to make memory bean bags, an idea for E when she was small that used the concept of the game “Memory” where you flip over squares to try to find matching images but each square was also a bean bag you could toss or play with in another way.  I believe I made four bean bags before getting sidetracked (also, it is not easy to sew with a baby in your lap) but here were some bright colors that seemed to match a “hot” green recommended by AFAA.  The deadline to mail out the square is May 31, 2013 so I didn’t want to lose time by trying to get to the fabric store for other options.

Squares cut, I was ready to piece them “right sides together.”  This involves making a sandwich of two squares with their patterns facing inward on one another.  Done and done.  Now I had to take the square pairs and sew them to make the 2 x 2 quilt square I envisioned.  I messed up and sewed along the wrong line so that the squares were all together like butterfly wings.  My mother in law set about using the seam ripper to undo my over-enthusiastic creation while I tried again with some other squares.

r600x600 (4)

I was so proud!  Now to cut the sides so that they fit into the 7.5″ x 7.5″ requirement on the instruction sheet.  I measured twice, cut once, and… had managed to cut the wrong side so that my square was now too small.  Time to add some fabric, right?  I measured twice, cut once, and had a strip of grey flannel ready to go on the sides that came up short.  Sew, sew, sew, and… I managed to sew the strips onto the wrong ends of the square.  Now I had a rectangle and not a square by any stretch of the imagination.  Some more adjustment, more grey flannel, and…

r600x600 (3)

Success!  I think AFAA can just use a little of the extra seam allowance I gave them.  I’m too scared to cut this square for fear of messing up again.  It actually looks a little more finished with the grey, don’t you think?  I am putting it in the mail with a letter for Adrianna per AFAA’s instructions.

It is a small act, I know, but I will tell her how she impacted my life as I am ready now to do something I’ve been putting off, that my children sat in my lap as I made this, and that I hope she is well soon.

____

Upcoming Blog Roundup: If you are a blogger, please feel free to head to this link, log in, then submit a post of yours that you’d like featured in the Food Allergy Blog Carnival.  My last go around at hosting can be found here if you are curious about how the submissions are used.  Thank you!

Food Allergy Awareness Week 2013

I think it breaks the fourth wall of blogging to comment in a post about the lack of posts on a blog but it has been almost a month since my last post so I thought I’d acknowledge that and give some updates on life with food allergies of late.  Oh, and work has been busy of course.  I’ve been back to active lawyering for a year now and to echo a concept in the book I am reading and enjoying right now, “Lean In” by Sheryl Sandberg (amazon affiliate link), work/life balance is a self defeating concept:

Framing the issue as “work-life balance”— as if the two were diametrically opposed— practically ensures work will lose out. Who would ever choose work over life?

Sandberg, Sheryl (2013-03-11). Lean In: Women, Work, and the Will to Lead (Kindle Locations 354-356). Knopf Doubleday Publishing Group. Kindle Edition.

So life is life and work is a part of it but cliche as it may sound, my family is my priority and that includes everything from managing this food allergy journey of ours to getting to forget about litigation for moments here and there to watch my children enjoy a splash pad on a sunny day.

walk logo FAAW

May 12th marked the start of Food Allergy Awareness Week 2013.  With everything having a “day” or a “week” or a “month” I can see how sometimes a day can’t just be a day, however, the positive energy that comes from making a concerted effort to raise awareness is encouraging.  I have increasingly taken up the cause of advocacy in food allergy.  Just a few things that make recurring appearances on my daily written to do list are the 2013 Las Vegas FARE Walk, the Food Allergy Bloggers Conference, the Food Allergy Parent Education Group, and Nevada Senate Bill 453.  In the meantime, we have also been doing new food allergy testing and food challenges for E and R (so far egg, milk, corn, and soy are officially off of the “avoid” list and we have an upcoming challenge for wheat – so we’d be left with peanut, tree nut, sesame, and oat as food allergies plus E’s severe cat and dog allergies).  I have to say I once felt jealous of parents who’d speak of their children outgrowing food allergies just as I’d also get frustrated with the refrain of many people when I’d tell them about food allergies: “kids outgrow those, don’t they?”  And yet.  Here we are now, with new doors suddenly open to us and the prospect of being able to instruct my daughter’s future teachers on a few less seemingly innocuous food items that could do her harm.

r600x600

I am on the walk committee for the 2013 FARE (Food Allergy Research and Education) Walk here in Nevada and we have monthly conference calls to catch up on progress getting sponsors, team sign ups, and just general advocacy.  During last month’s call, one of our walk directors, Dana Gordin, told me she had some “Be a P.A.L. [Protect a Life]” bookmarks (about 100) that she could give to me to share at the school we’re sending E to this fall.  I contacted the school and they were delighted at the prospect so Dana very generously shipped the bookmarks to me (I think she understands how hard it is for a busy mom of two kids under 5 to just zip over and pick something up – it was very much appreciated!) and E and I went to her school to give the bookmarks to the school nurse.  There was a time when I planned to homeschool E, even though I personally did not enjoy homeschool as a 7th and 8th grader, and now we are making plans for her kindergarten experience.  With other children!  She only attends preschool once a week right now for 2 1/2 hours so switching to half day, daily kindergarten will be an adjustment for us all.  I hope to be an active classroom mom as much as my schedule can allow, though, and have been trying to get her used to the idea of this new place and new friends.  She loved taking the bookmarks to the school and when the nurse asked her about her allergies she spoke for herself.  A surprising development in that I am used to being her voice.  When we left I asked what she liked most about the new school and she said she liked that there was a nurse.  My inner voice worried that this meant my daughter was fearful about her allergies and being safe but then that was countered with the sense that my daughter felt encouraged by the safeguards in place for her, and other children, to have a positive experience at school.

2013-04-04_15-56-03_385

A few weeks earlier, I brought the children with me to view, here in Las Vegas, the televised hearing regarding Senate Bill 453, which would allow for stock epinephrine in Nevada schools.  You may recall that my involvement (though minor) with the progression of this legislation reaches back into late last year.  Caroline of Grateful Foodie has been working non-stop at each stage of the legislative process to keep momentum and support for the bill strong so it is through her e-mails that so many of us knew to come to the Grant Sawyer Building to rally in support of the bill when it was before the Senate committee and later the Assembly committee.  The bill has passed both committees as well as a vote of the full state senate so next up is the Assembly floor vote and hopefully Governor Sandoval’s desk!

r600x600 (2)

Everyone I tell about the bill says it sounds like something they would support, but you can’t take common sense for granted when it comes to the legislative process.  Bills die without voices to hold them aloft and this bill would be no different.  I wanted the children to know that this is how you make a difference, by being present even if it is just to cheer on the policy makers and wear light blue to let them know who you’re with.  Even watching the livestream of the Senate vote from home, from afar in Vegas while in Carson City history is being made, is exciting.  I explain to the children that we have to make sure children who can’t afford epinephrine or don’t know yet that they have allergies can get help fast if they need it and it really is as simple as that.  Now, as a friend recently pointed out to me, it can’t stop at schools because there are many more people, such as adults in workplaces, that need injectable epinephrine that is readily available and the wherewithal to administer it, but this is a start.  Laws often work in narrow areas before they grow and change to wider implementation.

IMG956112

SB 453 is about as serious as things get on the advocacy side, but the fundraising of things like the FARE walk or the food free easter egg hunt hosted by FAPE or the Food Allergy Bloggers Conference all have a place in the order of things as well.  I was approached by Jenny at Multiple Food Allergy Help earlier this year because she wanted to put on a conference to bring the online food allergy community together.  You can read more here or even find out about registering and buying tickets to hear fantastic speakers, meet with company representatives for allergy aware products, walk with the blog conference team on November 2nd, and so much more.  It has grown and blossomed to be an event people are looking forward to and justified the feeling I had early on that I could make a positive contribution.  We have the support already of a local FARE walk grant, sponsors, ticket buyers, speakers, our host hotel the South Point…it is coming together.  Devin at Nom Yum & Free even gave us a very kind shout out so word is getting out and I will get to meet many in my support network in person when November rolls around!  I’m also hopeful that the local food allergy community will love what we have in the works.

trendingfoodallergy

Speaking of the food allergy community…. Jennifer at Food Allergy Buzz hosted the fourth annual Food Allergy Awareness Week twitter party tonight (well, if I get this post done in the next few minutes that is – more fourth wall breakage going on!) and one theme that resonated among participants was the level of support we get and give on the internet.  I have been able to find research, news, support, recipes, and more through the blogs of others dealing with food allergies when the allergists we tried out one after the other just weren’t offering the guidance we needed.  And so during this twitter party, which is kind of like a chat session open to anyone that searches for a particular topic marker called a hashtag for those unfamiliar with twitter, a few exciting things happened.  First, there was a great energy among participants and second, we “trended” on twitter!  That means that enough people were talking about #foodallergy that the hashtag was displayed to other twitter users (see the screenshot above).

Now as I sit here pondering all of the goings-on of the past few months, I wonder if I focus on the advocacy and awareness aspects of food allergy because I don’t want to think about the real threats to E’s safety.  Of losing her.  I’m not sure.  I actually had my first reaction related nightmare the night before Mother’s Day, that she was hurt and I couldn’t save her, and it unsettled me.  Am I devoting time to other pursuits that ought to be dedicated to my children?  This week has been one of a string of reflective ones for me as I contemplate whether working on things like a blog or going to hearings or looking at the computer screen for anything other than a “have to” instead of “want to” is the best thing for the people that depend on me directly.  I’m not sure I have an answer.  I read a fantastic post by Rosie Molinary (an author and blogger that the lovely Tami Hackbarth introduced me to), that outlines “honor[ing] your rhythm […] values […] and time” to achieve some sense of balance.  I was able to ask her some follow-up questions after reading the post and she suggested making a set time on the calendar open for saying “yes” and once that slot was full I should be comfortable saying “no” or deferring someone to the next available slot of time.  Does this strike anyone else as brilliant?  It struck me that way and I am trying to implement it.  I don’t want to come across as being ungrateful for the opportunities I have to help or be of service but as my children move into new phases and need different aspects of me, I need to be attentive to that.

None of this is flowing particularly well but it is authentic and it is me and I hope some of these updates are of interest.  I do know that I feel invigorated by time I spend nurturing my mind with reading and connecting with others so I see those things as helping me in my capacity as a mother and a wife.  There is so much to be thankful for and so much to keep striving for.  Thank you for still reading.

____

Elsewhere…my latest Vegbooks.org Posts:

Hilda and the Bird Parade 

The Penny Books

Hanukkah, Oh Hanukkah

Treasury for All Seasons

Baby Shower Gifts for Veg Moms