Food Allergies and Vacation

My vacation is a series of family celebrations strung together like colorful glass beads on a summer camp necklace. Each bead for me is both beautiful and breakable. You see, eating is a central element of most of my family’s celebrations, whether it is potlucks or dining out at restaurants or ad hoc affairs at breakfast around the worn kitchen table with close friends.

And I have food allergies and sensitivities.

Most of them are new. There are a lot of unknowns. Only 4 days before I left for vacation, I went into anaphylaxis for the first time. The day before I got on the plane I collected my first set of epi-pens — and I still don’t know what precisely triggered anaphylaxis the first time. In the past year and a half, food went from being a joyous, tasty celebration of life into a horrible, illness-inducing, possible cause of death. The upshot: I was going on vacation, armed with allergy pens, a hastily drawn up diet that my doctors hoped would work, and my wits. It wasn’t going to be a pretty battle.

I had my first food reaction only hours after getting off the plane.

I’ve learned a lot from the school of hard knocks and frantic research on a cell phone in the wee smas.

  1. Always ALWAYS ALWAYS carry your epi-pens and allergy medications with you. Pack extra if possible.
  2. It’s great if you have an “eating buddy” or two — someone who knows what your allergies are and is close at hand in case of a reaction or an unexpected situation. Some sites recommend having everyone in the party know, but I’m an adult and frequently travel with large groups where it’s impractical to have everyone know, or even, if someone is very squeamish or this is business travel, potentially a liability. But I do need someone to have my back. Case in point: I’m sensitive to citrus. If I go to the bathroom and a helpful waiter fills my glass with water from a pitcher with lemon slices in it — a common occurrence — I’d never know until it was too late. My allergy buddies have me covered.
  3. Case the restaurants ahead of time like you’re a thief planning on stealing the Mona Lisa. Check out the menu ahead of time, if possible. Some restaurants have allergen menus online, and the chain Smashburger even has an app. If there are still questions — and in the case of nice restaurants, I’ve found there often still is — try to call ahead during a non-rush time. If you get the feeling that they aren’t taking your requests seriously, go with your instincts and move on to the next restaurant. I made the mistake of dining at one spot where the person who answered rather flippantly said she was certain they used canola oil, only to have my mouth break out in sores when I ate my french fries. A call the next day yielded a different answer: they in fact used soybean oil.
  4. Some restaurants will allow you to pre-order meals the day before if you have to be very careful, make a lot of changes, or are going to be ordering off-menu. I pre-ordered oatmeal from the breakfast menu for a lunch date at one restaurant because I couldn’t find anything else that would work well … and the restaurant threw in whatever they thought could ever possibly go with oatmeal, carefully put in side dishes, for free. πŸ™‚
  5. Be polite but firm when asking for changes to a meal. Stress that this is because of an allergy. Most places will accommodate quite gladly and mark your order as an “allergy order,” because nothing gives a restaurant a bad rap like having one of its guests carted out via ambulance. It completely destroys the ambience. πŸ˜‰
  6. If, even after all your precautions, you start to react, follow the suggestion ofΒ The Hitchhikers Guide to the Galaxy: DON’T PANIC. It makes it worse. First, medicate if you are capable. Try to make sure you are in a safe place — if you pass out, are you going to fall onto a hot grill or bang your head on a table? Get safe. Relax as much as possible; mast cells degranulate with stress. Then communicate to your allergy buddy or whoever is nearby, and follow the rest of the process… calling 911 or trying to find the nearest hospital, screaming, general mayhem, and crushing disappointment. Or skip some of those last few. πŸ˜‰
  7. Having a list of safe restaurants already in hand is incredibly useful, even if it is just a few of your favorite chain restaurants. I, for instance, can eat exactly two meals at Panda Express, and about the same at Wendy’s. Having a list of slightly more fancy restaurants for the town you’ll be staying is also very useful when friends and family are planning events.
  8. Just because a restaurant has something on the menu you can eat DOES NOT necessarily mean it’s safe to eat there. Unless a kitchen has allergy protocols in place and uses designated cooking areas, traces of foods you’re allergic to can still be in your food. This is called cross-contamination. I experienced it in a “well DUH” moment of epic proportions, eating out at a dive of a seafood restaurant that regularly cooked shellfish in soy oil on the same grill I was getting my oil-less mahi-mahi cooked on. I had a burning dragon rash climbing with prickling talons up my skin in minutes and very narrowly dodged doing the epi-pen experience. Lesson learned: question before consuming. If a restaurant or kitchen doesn’t look like it’s handling things correctly, leave.
  9. I always carry some food with me (and have more at wherever I’m staying) in the quite likely event that wherever we go ends up not being safe for me. It’s also helped smooth the bumpy road of eating-based social interactions for my vacation thus far. At times, we’ve gone out for desert, but there was absolutely nothing I could eat. Being able to munch a fruit snack or Lara bar helped me still feel included and made my fellow party-goers feel more comfortable.
  10. Besides the websites of most restaurants, there are some other great websites to help you find safe food. One of my favorites is AllergyEats. https://www.allergyeats.com/. They even have apps for your cell phone. It’s dependent on user reviews, though, and can have spotty to non-existent coverage depending on where you are. Allergic Traveler has laminated cards you can order to show at restaurants: http://www.allergictraveler.net/. Or you can print out free cards atΒ http://safefare.org/chefcard. Several sites offer translation cards for travel to other countries or dining at ethnic restaurants, like Allergy Free Table or Select Wisely. I’ve read a lot of blogs, trying to get a clue about how to protect myself. Allergic Child at http://home.allergicchild.com/traveling-and-eating-out-with-food-allergy/ was very thorough, and even though it was aimed primarily at parents with children, it was a good start for someone like me who is just now entering the world of allergic reactions. Another blogger who travels worldwide suggested bringing along pictures of what it was she was allergic too, in case something is lost in translation.

Happy vacationing, good luck, stay safe.

 

6/15

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I got diagnosed with POTS/VVS in November of 2016. They are only two of any number of dysautonomic conditions. I had been seriously ill since August of that year, and sick for about two years before that. Being diagnosed was so important for me. I had known for a long time that something was wrong, very seriously wrong, but it had been hard to convince doctors of that. Like many dysautonomia patients, I sometimes physically looked fine. I was told by more than one doctor that my odd constellation of symptoms was probably nothing and that I should go see one of the campus trainee psychologists. I doubted myself. But no mental change brought about a physical cure. Instead, I got kept getting sicker and sicker. Finally, bouts of fainting landed me in the ER. I was so ill I couldn’t drink water unless I was on anti-nausea meds, and I had no sense of balance – the world shifted around me like the deck of a ship in high seas. That got me a referral to a neurologist, and she discovered a vitamin b12 deficiency and POTS. A cardiologist later added VVS.

I was lucky.

The average time to diagnose dysautonomic conditions is six years. Six years of struggling without answers, six years of doctor’s appointments, medical tests, and therapy. Six years of doubting your own mind, and body. SIX YEARS.

The Dysautonomia Project is trying to change that.Their goal? Reducing the length of time for a diagnosis from 6 years to 15 minutes – the average length of a GP doctor’s appointment. Patients need information so they can advocate for themselves. The general public needs to recognize that this is in fact an illness, and sometimes a very serious one at that – the average rate of disability for those with dysautonomias is comparable to that of congestive heart failure and COPD. Perhaps most importantly, physicians need to be educated about these conditions. This won’t happen without a lot more awareness. If you have a moment, please visit the Dysautonomia Project or Dysautonomia International for more information and to help spread awareness about these conditions.

https://thedysautonomiaproject.org/

https://thedysautonomiaproject.org/project/615-is-the-self-proclaimed-dysautonomia-day-as-it-typically-takes-6-years-to-diagnosis-but-with-proper-training-that-time-could-be-reduced-to-as-little-as-15-minutes/

http://www.dysautonomiainternational.org/

 

 

 

Water A Flower Day

Yes, that’s right! Today is Water a Flower Day.

In the physical world, I’m all out of flowers to water. My orchids are stubbornly remaining barren, and the garden boxes are similarly devoid of blossoms. Instead, I have pictures of the beautiful flowers at a local arboretum a friend and I visited recently, armed with suddenly flimsy-feeling cameras against the hissing guards of the garden.

DSC_0074

 

Happy Water a Flower Day!!

Archives and Accessibility

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Files at the National Archives

I sat in the dusty velvet and slightly moldy smelling AC’d air of a hall on a campus, watching an elderly scholar embarrassingly detail his student’s academic career — the lengths the student had been forced to go to when the advisor didn’t think the topic would work, the desperate search for grants, the months of research in far-flung areas of the world, and finally, the student’s success and contribution to the field and his acceptance of a tenure-track job offer right after he graduated with his PhD. A PhD that, at the end of this one last round of humiliation, the professor would joyfully hand to the berobed student. Graduation time. That advisor was proud of his student, and rightly so.

But it raised an important question for me, as I sat there listening to the AC and the advisor compete for who could rattle on the loudest and longest. It’s actually one that, as a student with disabilities, I’ve been struggling with for some time. How important is it for your career or research to actually physically go to the archives?

Archival research seems to be the gold standard in the humanities, a romanticized Indiana-Jones like adventure in search of the lost artifact of bygone generations. Here, it seems to say, is a scholar that is determined. A scholar who knows his stuff and has made the Big Discovery. A scholar that knows how to get funding from outside sources, too, in order to do research, because many colleges or graduate programs can’t cover the cost of an entire trip. Or, conversely, you’ve just found the rare scholar that is independently wealthy! “Surely,” I imagine a grizzled search committee thinking, “this is the scholar for us!”

Whether that scenario is true or not, I don’t actually know, never having served on a search committee myself. What I do know is that there are grants and fellowships out there to do archival research in libraries and collections across the globe. Some of them have specific requirements. For instance, there are travel grants only for European research, or they come with a residency stipulation — so many months spent in the area, perhaps giving the occasional talk or presentation. Some provide extra money for housing, food, and travel, and others do not.

These sort of grants seem to assume a few things: 1) you will be allowed to leave your campus; 2) you are able to travel; and 3) you are able to stay away from your home base (family, work, social obligations) for an extended length of time.

It’s difficult, even as a highly-ranked professor, to get time off from teaching duties. Not all campuses can afford to give their professors research sabbaticals for the length of time of the fellowship/grant, or so I’ve been given to understand. For lower-ranked professors – or adjuncts! – problem 1 might be the undoing of the entire quest. Problem 2: if you are disabled, is the archive accessible? Will you be able to continue with medical care if necessary? What if your condition isn’t entirely stable? Is there a properly equipped hospital nearby, or good roads to get to one, even? And lastly, number 3. Most research grants and fellowships are not set up with a family in mind. If you are a single working mom, spending 6 months on-site at an archive, far from home… is that really a feasible situation?

There’s a twitter feed trying to raise discussion on this very issue.

I personally think that in some situations, hands-on research is important. I’ve heard of fabulous accidental discoveries in archives, documents buried in boxes that the library didn’t even know it had. I’ve heard tales of students canoeing up African rivers and sailing on tall ships as part of their research. I think it all sounds wonderful, and exciting, and at the moment, completely physically impossible for me. My body is broken.

I am lucky enough to live in a digital age, though. Smart phones can take a picture, change it into a pdf, and put it in cloud storage in less than a minute. I have hopes that, although some grants should remain traditionally-oriented, there are other options also available. What if a travel grants would allow for the money to be put, not towards a plane ticket to Finland, but for a Finnish librarian to copy a few pages of a journal? How about if there were options for researchers to break up their long residency requirements into a few short trips of a couple weeks each? What if the grant amount and time required was less, but it came with extra money to hire a replacement and allow you to leave the 5 classes you teach for the college?

There is an entirely new generation of young scholars rising through the ranks. They’re arguably more diverse, and have different needs than the previous generations. Many have proven their determination and flexibility by continuing to achieve despite overwhelming odds and daunting situations. If archives and foundations want to continue to attract the best scholars of the time — who may or may not be single working mothers, or disabled students, or overworked lecturers — the grant system needs to become more flexible as well.