First “hike” !!

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It was more of a slow saunter, really. I’m not actually physically capable of much more than that, but realistically I wouldn’t have wanted to rush the first enjoyable walk back home. Our footsteps were hushed by the fall of leaves and bark from stands of eucalyptus trees. The air was scented with sagebrush and manzanita baking under the sun, dust rising from the well-worn path, and water. Although it’s been such a wonderfully wet year that the grasses are just finishing their turn from green to brown – something that usually happens a few weeks earlier in the year – even humans with their puny noses can still smell water in the air. It doesn’t matter if the water is being sprayed by someone washing their car in the early morning hours, or if it is the reed-choked pond that comes into view around the bend in the path.

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We take a break there for my sake. I’m the only member of the party the mosquitos don’t bother, funnily enough. Instead they head for the repellent- and sunscreen-doused figures of my mother and sister. The pond’s shallow edges are a fascinating microcosm; tiny fish and tadpoles dart just under the surface of the water while dragonflies zing and stall in iridescent steaks above. The water spills into an irrigation channel dug and paved with carefully selected stones; the channel was first built in the early 1800s. It leads to cisterns and adobe houses, still maintained but now mostly for the benefit of the wondering public than for habitation… with a few exceptions. The whitewashed houses with red-brick roofs standing on the opposite hill still house the rangers who watch over this preserve.

We take a slightly different path on the way back. There are blackberries on the bushes, tiny flecks of color among the prickly thorns and the glossy green-and-red leaves of the poison oak that is intertwined with the bushes. I leave them alone. Some other creature less sensitive to poison oak will eat them before long.

The beetle blight and drought has taken a toll on the stand of old pine trees at the crown of a hill covered in waving dry grass and mustard. The huge bones of the trees lay fallen on the ground. Others stand, dry skeletons. They’re a tremendous fire hazard. The only comfort is that all around this area burned the year before, so at least the inevitable burn, which will be hot when fueled by that much dead timber, might be contained. Perhaps. The wind is already coming up, just like it does every day. It will usually reach 20 mph, more than enough to drive any wildfire quickly through the terrain and spot it into other areas. There’s a surreal sensation of looking at a future battle zone.

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We walk down the hill and cross the creek at the bottom. The last stretch is bordered by ancient pecan and walnut trees. Nestled among them are native flowers, and poppies bloom in the rocky soil on the opposite side. Hawks cry in the air and the brush rustles as cottontails burrow deeper. The butterflies dance on, unknowing, uncaring, and unafraid.

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It is good to be back.

The Senate Healthcare Bill and Me

20170329_141629In less than a week, I will be home.

Less than 12 hours after I land, I will be undergoing another procedure.

For the last several years, I’ve been lucky enough to be on a good health insurance plan. Still, I have to pay anywhere from $5000-$7000 each year on my health care, not counting the copays for my prescriptions. That is after insurance. I hit the maximum out-of-pocket this year months ago. My procedure, which will allow me to sing again without bracing my ribs, to roll over in bed without screaming, will be covered.

For now.

I have multiple preexisting conditions. I have had expensive heart surgeries before. I will again. But the plan proposed by the Senate could mean that health care, which is already devastatingly expensive for me as a graduate student, might be financially out of reach. Loopholes might mean more expensive, less comprehensive care for people like me. Annual or lifetime caps will mean a price has been coldly set on the value of my life. I need health care to live.

I want to live.

Today I will live. Dozens of tests and procedures will allow me to help my family set up a weathered picnic table for an annual neighborhood BBQ. I will swallow two dozen medications and supplements so I can eat crisp lettuce and carefully prepared, allergen-free chicken. Next year, whether I am in any condition to attend the BBQ may depend on the decisions of lawmakers who are right now indirectly setting a value on my life.

Please. Call your representatives. Electronically contact them; apps like Countable [https://www.countable.us/ ] make it easy. If they are against this bill, thank them. Encourage them. If your representatives are supporting this bill, please urge them to reconsider. This is not about red vs. blue, Republicans vs. Democrats. This is about life vs. death for people like me. Please, call.

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

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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/

 

 

 

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.