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. 🙂
  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. 😉
  6. If, even after all your precautions, you start to react, follow the suggestion of 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. 😉
  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 at 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.

 

Butterfly on the Go

Many different species of butterfly migrate, traveling long distances on fragile wings in journeys that cover thousands of miles.

I am on my own annual migration – vacation. Each year I travel home for Christmas and/or a couple weeks of summer. This year was a grand trip that will mean several important events – anniversaries, birthdays, holidays, and graduations. I’m documenting what it is like to travel and vacation with a chronic illness. Already I am deeply envious of those butterflies, who seem to glide so gracefully through the air on their journeys … but even they face the odd storm.

The first challenge of The Vacation was setting dates. On top of the normal summer work/study that is a graduate student’s life, I had to also work around a rigorous schedule of doctor’s appointments, testing, and surgery. I tried pick dates when I wouldn’t be as sick [“you’ll be all better by then!” relatives sometimes insisted, and I would do my best not to try to explain the meaning of “chronic” and the difference between “treatment” and “cure” again.] I jammed as much medical stuff as I could into the weeks before The Vacation. And I paid out-of-pocket for medication refills that my insurance wouldn’t cover because it would run out before the end of the trip.

The next challenge was packing. I had enough medical paraphernalia to fill an entire carry-on and then some. My sister and I were going to travel together. We split a checked bag and I packed a few things into the extra-large duffel, hoping desperately it would make it through. Important medications went with me. My carry-on was definitely over the size limits, but fortunately no one made a point of it. I bought a portable sharps disposal container (it looks rather like a very very large crayon).

It has been working great. I had medications that needed to be kept cool, or better yet frozen. I purchased a medication cooler case online. I had no trouble making it through security with that or the medications. I told every single TSA agent I met that I had medical implants and a bag fully loaded with medical gear, and they could inspect it any way they liked! In the end my pack simply went on the conveyor belt through the machines, and a few whispered conversations later, I was just handed my bag at the end of the line. They were helpful and respectful the entire time. The hardest part was the endless standing in lines – to drop off checked baggage, use the bathroom, or get through security. I have POTS/VVS, and one of the challenges of that condition is standing for long periods of time. My heart races, my blood pools in my extremities, and I feel absolutely wretched. If it takes too long, I’m in danger of passing out. But I did NOT want a wheelchair! Instead I wore compression socks and imitated the children in the airport… I sat on my luggage or knelt on the ground when I needed a break. There was the occasion odd look but no comments, and I count it as a success.

Once through security, we learned our plane was broken and had to be fixed. It took so long they had to get new pilots!  By that point we’d spent so long at the airport that I’d needed to eat twice and take medications. The employees at Starbucks gave me hot water to mix medications in for free. No one looked at me oddly while I took pills. There was a sharps disposal unit on the wall of the women’s bathroom. And Smashburger has a simply AMAZING allergy app to help you find safe foods. In the end we raced a thunderstorm off the runway and into clear skies. It was a very positive experience even with the delay.

The plane was another story. It was cramped and uncomfortable. There wasn’t anything that I, with my food allergies, could eat. Even though the cabin was felt icy to me, my medications were thawing by this point, the little gel packs giving up after a lengthy battle against entropy. I asked for ice from the stewardesses and, after some discussion, they filled an air-sickness bag full of ice. My sister, capable and fierce travel companion that she is, helped me fill a sandwich bag with ice for the interior of medication case, then stuff the entire case into the barf bag of ice and wrap that in a jacket. It stayed cold the entire flight. While it might have been a little messy, we made it! And everyone was so helpful.

Finally, we picked up our luggage and our ride picked us up. We had to break the four-hour long drive home into legs, but after only 14 hours of travel, we made it to our home away from home.

Lessons learned: have food picked out at the airport ahead of time. However much food you pack with you … times by 1.5. I wasn’t the only one going through the lines with medical supplies, by any means, and I noticed the TSA seemed to handle it much easier if you declared it frequently and politely. Those who didn’t warn anyone took longer going through the checkpoints. I’m also going to see if I can’t find some tiny instant-ice packs. Supposedly, if they are deemed “medically necessary” there’s a chance they’ll be allowed through. On the homebound leg of this trip, I’ll traveling for 5-6 hours before even getting into airport security, and the first packs will already be…well, slush might actually be a tad too optimistic.

 

 

 

 

6/15

https://scontent-lax3-2.xx.fbcdn.net/v/t1.0-9/18814362_1344101948999388_4926765367927521622_n.png?oh=3de2c567663f9c8b70310d81f1ee6bc9&oe=59E9BA6D

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/

 

 

 

Manners and Illness

Manners and illness seldom glide gracefully along together. It didn’t strike me then. Not while I was on my hands and knees, trembling, inches above the shredded bark filler of the landscaping in a parking lot outside of a hospital. I’d just had a test, and I wasn’t reacting well to the three days without anti-nausea meds required for it. I’d just lost my third attempt to drink water. I was desperate.

So was my driver, who was standing nearby, but for different reasons.

A truck, I think – something large, not an ambulance – pulled up next to us. “Is she all right?” the driver asked. And my driver – the person I was trusting to call it if I was in too bad of shape to call 911 myself, to take me into the ER, to do something – that person said, in tones of great embarrassment, “she’s fine!”

I was anything but fine. Hours later, I shivered in my bed at home, unable to get warm. The sides of my back hurt. I could barely keep my eyes open. My lips were swollen and cracked, and I could barely manage to swallow. It was hell. But I’d finally managed to keep an antinausea pill down long enough to do some good, and my driver – whom I later learned hated doctor’s offices, hospitals, or anything medical for that matter – was the one who was responsible for forcing fluids down me for hours on end until I was fine.

I survived. I also learned how to do unpleasant, but extremely effective, non-hospital interventions for bad dehydration. Something kept niggling at me, though, over the next several months as I apologized for, well, almost everything. I witnessed the discomfort of those who surrounded me when I was sick, and I realized that we are conditioned to expect certain, largely unspoken but fairly rigid, societal rules of etiquette to be followed. There’s a lot of regional varieties to manners, like apples but without the pleasure of still being acceptable once you’ve made sauce of them. Here’s a few from where I live now:

  1. Never chew with your mouth open. …Except when you can barely breathe and are simply grateful to be eating on your own!
  2. Always try some of every food …Except when you have food allergies.
  3. Clean your plate…Except when GI problems strike and you can’t possibly eat a large amount of any food, let alone whatever mystery meat ended up on your plate.
  4. Sit up straight, legs crossed at the ankle (for women)…Except when muscle and joint pain and broken bones interfere, or when falling blood pressure drives your body to automatically curl into a ball, clinging to consciousness even when it’s a misery.
  5. Let older people sit down first …Except when you’re unfortunate enough to be younger and have an invisible illness that means you will be unable to stand.
  6. Don’t take the elevators – take the stairs, it’s better for the environment…Except when you can’t handle stairs, even if this means taking the elevator at the gym down the one story to the basement pool.  
  7. You are always “fine,” when asked, and you always smile.…Not even going to touch this one.
  8. No being sick in public…Except when… no, don’t even think about being sick, mate. Ever.
  9. Don’t make a scene or be dramatic…Except when you have sensory processing disorders, or are absolutely feeling wretched after having received your fifth diagnosis of the week.
  10. Don’t cancel at the last minute, or be late …Except for when you are chronically ill, in which case you will be doing a lot of last-minute cancellations and strolling into places just a little bit behind schedule.

There’s a lot of rules. Even subtle violations of them cause a cascade of immediate reactions. I often get odd looks as I wait to take an elevator, and those odd looks can turn to glares if I’m not showing the appropriate level of respect for someone older than I by giving up a seat, opening a door, or lending a helping hand with groceries. Rarely, I get rude comments, although unfeeling but offensively-intended remarks are far more common. These are the typical “you’re so skinny, you need to put meat on those bones! Don’t diet! You are too young to be taking that many medications! Well, you have a great personality and are more than your body” statements; they miss the medical reasons or self-respect I might have for myself and are embarrassing but not immediately harmful.  It is rare that the embarrassment of my being ill actually leads to real physical danger.

Yet it happens. Someone sick is dismissed as being a “lazy entitled millennial” instead of a chronically ill young human being – and while generationalism is a subject for another post, the rationale is that it is simply bad manners, not a real ailment. A woman is more likely to wait longer than a man for pain relief in an ER – gender differences at play? They cry more, after all; maybe they’re just badly behaved. These things all lead to potential health crises because the underlying societal rules, what even ER doctors and nurses have grown up being subtly instructed in, dictate that when these rules of manners are broken it’s not because something is truly wrong, but because someone is simply out-of-line.

That day, my driver’s instinctual, embarrassed following of the rules of manners nearly had disastrous consequences. But being chronically ill, especially (relatively) invisibly, means that society’s “rules” are going to be broken. For me to accept that I’m not being rude by being ill means recognizing that those “rules” are only guidelines, and that in cases of an emergency these sort of niceties are meant to be broken. In an air emergency, the plane that’s blasting “Mayday!” gets to land first; on the road, ambulances even get to drive on the wrong side! Unfortunately being invisibly ill means that many times those around you aren’t going know that the reason you’re sitting curled in a chair is to battle low blood pressure, or that you’re wearing thin clothes in winter not to be flirty but because your autonomic system doesn’t regulate temperature and you’re burning up. Without the glaring lights of an ambulance as a social cue, no one but me knows just what “emergency” my body is experiencing at that moment.

I’m gradually learning not to apologize, but to gently explain when my breaches of etiquette are caused by my condition. Many understand, learn, and let it go; they’re all right with me sitting while others stand, or enjoying water while they eat food. For some people, being around someone who is that “badly-mannered” is too embarrassing. I’m learning to let them go. For others, adaptations are necessary. If it is too awkward for social eaters to be around me when I can’t eat what they’re having, I find a way to gracefully bow out. The stress of me not eating is psychologically far greater for them than it is for me, but with my food allergies, downing what is available could be life-threatening. I might not have my driver from dehydration day take me to tests again; not only will her phobias make it a horrendous experience for her, but her fall-back to manners and her intense fear could put my life at risk.

It’s not that these people can’t be my friends – it’s that the same accommodations I must make for my own body’s quirks might have to be extended to theirs, too. The Golden Rule of manners is, I suppose, the only one that still applies. Do unto others….and extend compassion.

 

Confessions of a (chronically ill) graduate student

Just when I think I’ve got medication schedules down and have a handle on things, I forget that Med 1 has to be an hour before eating, Med 2 a half an hour before, and Meds 3-infinity have to be taken with food.

Ramifications: I can’t just grab a quick bit on my way out the door to a concert. Missed concert so I could eat, take meds, and function another day. Simple, necessary, and devastating self-care.

Confessions of a (chronically ill) graduate student

A chronically ill graduate student’s dilemma: protect my spot at the microfilm reader and continue to enjoy accidentally unspooling the reels, or go pick up medicine at the pharmacy and risk losing the machine to some other desperate graduate student in search of an idle 8 hours of frustration??

Hmm.

Decisions, decisions.

Parental Grief

There are so many different ways that chronic illness affects our lives. Once, a long time ago, I lived next to a peat bog. It caught fire one summer. Quickly, the raging flames on the surface sunk down through the layers of peat, burning and smoldering for nearly a year. The area was devastated, the smell was terrible, and the mixture of smoke and fog — eventually dubbed by the locals as “bog smog” — created extraordinarily low visibility conditions. Sometimes the hood of your own car would be barely visible, the one time the exaggeration about the thickness of the local sea fog was the factual truth. Many people died on the roads that year.

Chronic illness is smoldering inside of me. It has been for awhile now. It can flare again, and like the firefighters in that town, all I can really do is contain, and watch, and wait. I’ve had to work hard to accept and adapt to being a peat bog … not that, if you asked anyone who knew how clean I keep my bedroom, it should have been that big of a jump.

Perhaps worse than my new status as peat bog fire, though, has been the impact on my nearest and dearest. Sometimes in the heat of the battle it’s easy to forget about the effects that battle has on others. But at other times — like now, working on planning a family vacation — it is painfully obvious the damage the fire has wrought. Even though I’m a graduate student and have long since left the nest – my old room is now a considerably neater guest bedroom – I still enjoy a close relationship with my family. Watching the devastation caused by the pervasive, smelly smog of my chronic illness has been heartrending and frustrating.

I have to live with my status as a student-with-disabilities every day. But I’m several hundred miles from my nearest family member, a couple thousand plus change from my parents. Their interaction with my conditions is limited by distance, which both shelters and hinders them. Instead of seeing all the good and the bad together, they typically get brief, painful news bites at the end of the day or week … trialing this drug or that, developing a new allergy, sick with another infection. If my parents come out to help me through a surgery (which they’ve done, bless them), then they see me at my worst. When I’m back home on vacation, after carefully trying to make sure I’m at peak functionality, with everything work-related cleaned off my plate and nothing to do except relax, it can sometimes seem like I’m doing quite well. That is until, of course, some plan is proposed that I simply cannot do, and my parents are faced with the reality of my conditions again. Slam, the fog descends, leaving everyone blindly feeling their way through the dankness.

Pervasively, slowly, my conditions began to change our family dynamic. I had to come to terms with my illnesses fairly quickly, as it’s my daily life, although in many ways I’m still learning to cope. Insulated by distance and love, my parents are experiencing this journey to peace more slowly. It resembles nothing more than the grieving process. Even though I am not dead, there has still been a loss: the loss of health for a dear daughter. There are stages to the grieving process, modern psychology tells us: denial, anger, bargaining, depression, and acceptance. It’s less of a smooth train ride with planned stops than a spinning, jouncy carnival ride.

Denial and anger go hand in hand, smoke to fire. Tendrils of disbelief rise smudgily to the sky – “no, this can’t be. You’re just too sensitive, is all. It’s not possible.” But if there is no belief that something has happened, there is no chance for healing. And I am simply sick. Bright anger flames spring up. “That doctor is a @*&%!!!!” “You should never have done that, that was stupid!” “The insurance industry is such a … !” Anger flares fast at anything in its path: at doctors, at a condition, at the treatment path that I chose. Anger is not always a particularly rational force. It redirects pain but doesn’t always process it. From my own battles with accepting my illnesses, battles I still fight, I know that anger is bizarrely comforting in its own way… it devours so fully there isn’t room left for anything else. Perhaps that’s why it flames so readily to life.

Bargaining results in odd little promises, both to themselves and to me. “Oh, you’ll be better by then,” is something that slips out, hopefully, frequently. Far more rarely comes a more brazen “well, maybe this (insert situation or gift) will motivate you to get better!” Less concrete, but no less attempts at bargaining, are phrases that start with “if only,” or “maybe if I/you just” – a bargain with the past or the future. I bargain with myself all the time, as a sometimes outwardly-motivated person: “if I just get through this PT session, I will eat a popsicle as a reward!” At least bargaining shows that there is some acceptance that there is something, or some reason, to bargain.

Depression is bog smog at its thickest. It can be an odd blend of both the practical and the emotional. Physically, isolation is a serious consequence. Staying with me when I’m sick can be an incredibly isolating experience.The bog smog cut off our small town from the outside world, and in a similar fashion depression can isolate one emotionally. However, no less isolating is being “that family with the sick kid,” because it is completely possible to feel separate from the world even in crowded places. The cost of illness in dollars and cents can cause feelings of despondency with terrible regularity, every time the mail is delivered and another bill appears in the stack, the crisp white envelopes always belying the yawning black hole of hopelessness that opens with its flap. Dire situations prompt a lot of wondering if there will ever be anything different, if there is ever going to be a way to get out of this. There is a lot of sadness and regret for not trying different approaches or doing more things when I could, even though they couldn’t have known the future. There is a sense of loss for what might have been: pretty sparkly dreams that they and their daughter held dear, the things that they fought so hard to enable her to do, might now be out of reach.

Acceptance seems to only come in fits and starts. It’s doubly difficult because I continue to get new diagnoses and develop symptoms, only to combat them and rise again. It isn’t a fixed situation, this slow burn of chronic illness. Control and containment are occasionally shown to be nothing more than illusions. It can be dangerous, dynamic, and incredibly unpredictable. I don’t know if I’m going to be able to go with them on a day’s excursion, or if I’m going to simply need to sit and rest. The changes mean that just when they have managed to “accept” that I might walk slower, suddenly there comes a day when I struggle to walk at all. A food I can eat one day suddenly causes an allergic reaction the next. Accepting that your child is ill, and that the “old” child is no longer — illness took something away from you, and never gave it back — has to be one of the hardest things to face. And although I am 30, not 3, I am no less my parents’ child.

It took a long time for the peat bog fire to burn out. Over the next decade, the bog regrew. Sometimes it would look the same for months, waiting for the next season of change. But then overnight, with a decent rain and the right conditions, it would suddenly seem neon with bright new growth, electric life. Now trees grow there, and all the animals, including several threatened and endangered species, are back. It takes time to heal. It takes space. It takes a certain kind of resiliency to weather the fire and then come back, and that my parents try at all is a sign of their fortitude. I am proud of them.

To parents, I want you to know that it is all right to grieve. It isn’t shameful. It isn’t wrong. Don’t be afraid to grieve. For those with sickness watching their parents grieve – hang in there. It might not always seem fair, and it might be painful to experience. But they have to change too, even as you are. Grief is a season, though, and it will pass, like any other season. Eventually the burn scars of the bog are just a testament to the strength of the system, a proof of things endured and conquered. So may it be with grief.

 

Fly high. Stay strong.

Titanium Butterfly