One Thing I Learned

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I was innocently reading a web page and abruptly ran into a challenge: What have you learned from being chronically ill? What has changed for the better? The challenge was given with the protestation that this wasn’t about being all Pollyanna about the miseries of being chronically ill, but when they looked back on their journeys, there had been positives.

I know there have been in positives in my life due to chronic pain and illness, and one of the changes I’m embarrassed to admit. Most who follow my blog might, by now, have picked up that I like nature. Maybe, perhaps, I’m a wee bit nuts about it! I enjoy taking pictures of colorful but still very buggy bugs routinely. I was raised to enjoy the outdoors and when my dad handed me a Nikon film camera when I was a tween and started to explain the magic of photography, I was hooked. But when I first moved over 2000 miles from my tiny coastal village to a large landlocked city, I had a pretty horrendous attidude about their version of the “outdoors.”

It was a city. It had parks. With smooth asphalt paths and a few carefully marked, well-traveled, wide “nature trails”—code for something that often had little educational signs periodically and maybe even pooper bag dispensers. The trails were all easy, and almost everyone on them believed that they were really experiencing nature or “hiking.” I did one park’s trails 3 times before lunch one day and then gave up, disgusted. I went through three different sporting goods stores before I found one that had hiking boots. The stores did have ATVs though, to make it easier to pack out after a successful hunting trip—or perhaps to pack in an adequate amount of beer for the trip. There was some good hiking several hours’ drive away, but I had been used to literally walking 10 minutes from my house and finding my way around a preserve on trails that no one had ever bothered to label. Even in my master’s program, everyone escaped into the mountains every chance they got and some also for some chances that probably weren’t really chances but just phosphenes from squinting too hard for a second. Didn’t matter. They were “outdoorsy” and proud of it, and that didn’t just mean ties with pictures of deer on them.

Now, I did think that it was cool that there were accessible trails and playsets and treehouses scattered about, but I’m ashamed to admit that I thought pretty much every trail in the city was accessible. I had a plenty of scorn and very little consideration for anyone who believed differently,

And then I went from having a condition that was supposed to be permanently fixed to having a condition that was less fixed to having multiple surgeries and diagnoses and needing help to make it to the bathroom. My world drew in on itself, and I was so sick I didn’t even notice the suffocating snugness of it until it was practically skin-tight. I couldn’t walk far at first, but eventually I began to stagger around one of those little looped asphalt paths. Those tiny jewel-like parks meant a lot more to me.

A lot of my butterfly photographs are taken at parks like those, a couple hundred acres of playing fields and playsets. Some of them have woods and natural areas—fields left to grow wild, ancient trees with the scars of past disasters still visible in their trunks. With a bit of care and a long-range lens, many of my photographs give the impression that I’m much farther in the wilderness that I actually am.

I learned that not all the trails I had thought were “accessible” were really accessible at all. I learned that there were many different ways to appreciate nature, and not all of them involved putting on a pack and hiking. My world had shrunk to me like a cotton shirt that had accidentally been washed on the hot cycle—now, with the help of friends and parks and ramps and door paddles and elevators, it began to slowly stretch out again. I appreciated the kindness of the people who graded the difficulty of the trails and made some short loops—bugger my old self, so proud at being able to do them all in a morning! My old self was an ass. The one place where there should be plenty of room for everyone—our parks—I was perhaps the most judgemental about sharing in any meaningful way with people less fortunate than I.  There was room at those parks both for people wanting to take a nature walk and for people like me to lap them. The only place that hadn’t had room was my mind.

I’m still learning. I hope not to stop learning any time soon, either. I hope I’m not so arrogant now as to think that I’ve mastered the art of empathizing with others, or that I’ve suddenly solved the problems of accessibility in public nature preserves. I also still find myself thinking that many people in the city need to redefine what they think of as “wilderness” and “hike” yet, too. I’m not quite so far from my old self as I’d like to be! But neither, thanks to chronic illness, am I the same smarmy, scornful girl of five years ago who mocked trails that were less than a mile and had handrails. For that, I am grateful.

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Dysautonomia Awareness Month – A Week in the Life of POTS/VVS

INTRODUCTION: DAY 1

I faced a moral dilemma when I decided to write about dysautonomia awareness month. You see, whenever I look at a calendar, I’m struck by all the “XYZ” days we have. I have to try to keep track of staff appreciation day and crazy hat day, and then there’s breast cancer awareness month and rare disease day and a million others besides. This is of course in addition to the bizarre daily grind of life as a disabled graduate student — the never-ending stream of doctor’s appointments, staff meetings, and paper grading deadlines. After awhile, the sheer number of events that are supposed to be important actually does the opposite. They all run together in my mind and become indistinguishable, blurry, and meaningless.

As I stumble across the bumpy, hilly bricked main walkway on my campus, struggling to keep my balance on the uneven surface, I’m bombarded by shouts from a dozen different college groups. They want us to volunteer, to co-op, to donate money, or to simply wear a pin for the rest of the day about some issue about which I’m woefully ignorant. A lot of them are indeed for very worthy things. And sometimes I realize that I don’t care about them all, either – certainly less than half of them half as much as they deserve to quote dear Bilbo.

That is, of course, until it is my day, my week, my month. And all of a sudden, advocacy and awareness and attention-grabbing events all seem so much more important and urgent.

Hypocrite, my mind sneers at me. What sort of human being am I, that I so casually walk past a healthy, sugar-free bake sale to support the dentistry students going to Mexico to provide free dental care? Am I a horrible person because I don’t give a dollar and buy a treat (which I will probably be unable to eat and have to pawn off on someone else, but still!) Why am I such a hypocrite, that I think there are too many awareness days one minute, and then not enough one minute later?

The problem is information overload, emotional fatigue, and just sheer lack of time. It isn’t really that I don’t care, especially if I give myself a minute to think about it. I do very much care about dental care in Mexico, about pediatric cancer, and about the after-school music programs. I just can’t spend the emotional energy to empathize with it all, and I certainly can’t do something about everything. There isn’t enough of me. It isn’t hypocrisy when I don’t throw myself into every worthy project that begs for attention – it is simple self-preservation.

That still left me staring at the little turquoise ribbon and the words “Dysautonomia Month.”  This series is a result of that decision: that no, advocacy of one thing does not make you a hypocrite for ignoring the others. I can write about what I know. So for the next seven days, because I have far too little time and attention to last an entire month, and besides, it’s really not that interesting – I’m going to instead write about what each day is like living as a graduate student with dysautonomia (among other conditions).

I will also put up pictures of a some really amazing butterflies, too. I promise.

 

 

Traveling with POTS, IV

My luggage is also full of compression wear. I packed a lot, and I used almost all of it. I thought about not bringing much… but then I remembered that I probably wouldn’t want to spend time and energy on vacation hand washing hose every night. Thankfully even compression athletic leggings don’t take up much space or weight in luggage.

Even if I don’t need thigh-high squeezers at home, when I’m traveling the stress and additional demands of travel mean that I sometimes really have to just flail about putting the things on and lump it (literally, because on a bad flare day the pressure might bring about a rash). But it’s worth it. The difference in between watching a movie or counting the soggy popcorn kernels on the floor of the theater is a pair of boa-constrictor tight hose in a stylish (*not*) nude.

Chronically Ill Bitch, Baby!

I am a Bitch. I got called that during one of those long weekends that should have been going swimmingly — the beautiful blue sky, warm weather, fun events, and large party of people — but oddly, almost incomprehensibly, it wasn’t going well. I made it 30 hours before I was repeatedly dubbed a bitch in a restaurant by a member of my party. My crime? Well, succinctly, being a strong but chronically ill young woman.

The possible provocations, when broken down, were those aspects of living life publicly with a chronic illness: I am a Bitch because I didn’t want to discuss my food allergies with my fellow diners, loudly and publicly, in a restaurant, and I apparently had a Bitchy tone when I tried to shut the conversation down.

I am a Bitch because I didn’t want to try something, and so I just said I didn’t want it. I was also allergic to it, which might account for the “not wanting to try it.” Unfortunately I had to go into that in order to defend not ordering and paying for, as an adult, a food I couldn’t eat.

I am a Bitch because I needed to quickly eat a home-prepared snack in order to take medications about an hour before eating at the restaurant. The restaurant where I’d called ahead and discussed options with the chef before pre-ordering the only safe thing on the menu for me … oatmeal. I don’t think spoiling my meal was an issue, although I’ll say this: the restaurant really pulled out the stops on their oatmeal for me.

I am a Bitch because I needed to stop and take some medication. It’s something that I always try to do discretely but, thanks to the curiosity and control-seeking tendencies of my fellow event-goers, had to be explained in excruciating detail. (Where are you going? Why? Why do you need to take meds? What for? What meds in particular? Have you taken them yet? No, I don’t think you should take meds now!) I am a Bitch because I finally told them to go ahead so I could go to the bathroom (and deal with my medications in relative peace); I would catch up at the cars. I am a Bitch because I have to take medications about 8 times a day. My life-preserving measures are, of course, a huge inconvenience to everyone else, and earn me some well-deserved ire.

I am a Bitch because I had to take a lunch box and small bag of gear with me through an entire event (event staff did not have any problems with this). I am a Bitch because I walk slowly through the rushing crowds, and sometimes I need to stop and sit. I am a Bitch because it is safer for me to take the elevator instead of the stairs, even if this means I have to first find and then wait for the elevator to take me only one or two stories.

I am a Bitch because exuberant driving, like roaring through suburbs and pulling Gs at corners and lights, makes me motion-sick. Informing someone of my growing queasiness is spoilsport, complaining behavior. I am a Bitch because I need to sleep instead of party the entire night.

I am a Bitch because, while everyone else gets up, puts on clothes, and leaves, I get up, stretch, eat, shower, dress, and pack my lunch. And no, we were not late, and I did not wake anyone up.

For some reason, this particular instance of name-calling hurt far more than the odd cat-call on the sidewalk or elevator eye on the train. Coming from someone I knew, it was more personal at the same time that it is dismissively derogatory and shamefully sexist. On the other hand, the situation itself is rather painfully familiar both to me as a woman and someone with a chronic illness. As a woman, my desire to walk to the car by myself was interpreted as dismissive and arrogant, not assertive and capable. As someone with a chronic illness, I was flouting their concern for my well-being; no one had heard of the term “ableism” and it wasn’t quite the time to bring it up… or the presence of ramps, elevators, and shuttles scattered liberally through the event grounds that would enable me to make my way safely back to our cars. Throughout the weekend, my chronic illness meant that I had to behave in ways other than expected for a woman of my age. This might mean anything from going to bed early to being pro-active and firm about my diet. This meant I was defying social norms, and because of this willful defiance, I was a Bitch. As for tone, well, a person’s tone of voice is always subject to interpretation and is a messy no man’s land of interpersonal communication. Whether I was whiny or just trying to pitch my voice to be heard over the restaurant babble without simply shouting, even I couldn’t tell you. This doesn’t even take into account perceptions of the timbre of women’s voices over men’s. On an individual level, of course, thanks to the acoustical wonders of my human head, my voice always sounds different to me than it does to others.

Leaving that aside, however…

I am a Bitch, everyone!! It’s time for some deserved reappropriation. I earned my new title of defiance by being a chronically ill and assertive young woman. Even without the leg up in the bitchiness standings that my illnesses and sex have given me, it is entirely possible for you too to become a Bitch. Stand up for yourself. Trust your instincts. Take care of yourself. Do your own research. Think for yourself. Come to a reasoned decision, and then stand behind it. Don’t compromise your health for someone else’s comfort. Speak up. Don’t let others shame you for your race, sex, health, or any other little metric. Respect yourself.

To all my fellow Bitches, whatever your gender, hello! And welcome to the party. Fly high and strong.

 

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

10 Things To Say To Someone Who Is Chronically Ill

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  1. It’s great to see you!
  2. You look happy!
  3. Can I help you with anything now/today/tomorrow/this week?
  4. How is school/work/hobby/anything not specifically health-related going?
  5. Let me bring dinner over this week. What do you like?
  6. I’m going to the __________. Anything you need?
  7. Want to hang out this week? I can just come over and color with you, even. And it’s fine if you need to cancel.
  8. Thank you for coming!
  9. How about this crazy weather?
  10. Do you want to hear a funny story?

When faced with someone who is sick, it’s really fantastically hard to know what to say. If it were easy, there wouldn’t be such a booming business in greeting cards! It’s difficult. We get it. And the sicker I get, the more innocent little phrases become inky-black shards, cutting deep and staining. “It’s wonderful to see you today! makes me wince at all the other todays I should have been there for, even though that wasn’t at all what the speaker intended at all.  “Get better soon!” A command that I couldn’t ever hope to obey, no matter how much I desperately wish. “You look like you’re feeling better!” is a perennial favorite of the chronically ill, because we rarely are much improved. Instead, like Cinderella, we’ve become so transformed by clothes and some fairy-godmother-worthy magic with makeup and hair that we aren’t recognizable as “sick” to friends and colleagues. Presuming, of course, that the illness was even visibly recognizable in the first place. “You’re too young for this,” “you are too fat/skinny,” and “you should just try harder and you’ll be fine,” are all quite horrendous enough that there really shouldn’t be anything acceptable about saying those to anyone, anyway.

Instead of the continuing with the list of “don’ts!”, here is a list of “do’s.” Just saying it’s great to see someone can also be guilt-inducing, but there has to be some adaptations and acceptance on my part. I have to accept that I am sensitive, and to bury my guilt over what I can’t change – my illness – until like most things buried, it transforms into fertile ground for the growth of something greater. Telling someone they look happy is just about as bad as “you look like you’re feeling better,” depending on what war your friend is fighting. Someone in the depths of depression can sometimes manage to look happy, just like I sometimes manage to look like I’m feeling better. But I personally have a horrible poker face, so if I look happy, I probably am… and it’s important to recognize that just because someone’s chronically ill doesn’t mean they’re not also going to be happy sometimes and would like to tell you why. I like to hear funny stories, and sometimes genteel conversation about neutral subjects – pets, weather, gardens – is just what I need. Trust me, I don’t like to always be talking about my health. Thanking someone for coming is just good manners, whether or not a person is ill, but this can also be a sort of acknowledgement of the extra effort it might take me to attend an event and how important that means it is (and by extension, who is hosting is) to me. I’d love it if my friends would come over and just play a few rounds of Uno with me when I’m down. I can’t tell you how many times I’ve been rescued by someone asking if I needed anything from a store. Taking someone meals is harder, to be sure, but once again, having someone take the time to handle that, especially on days when I’m really ill or recovering from a procedure, means the world.

I’d never have learned all these phrases unless someone had tried them out one me. Tentatively at first, then with growing confidence, they persisted, and I learned that not all comments sliced like glass. Thank you to all those who dared to care! May your experiments in kindness never fail.

Elimination Diet Spaghetti

DSC_0042I called it “insta-food” on the shopping list. Those things that could be plunked in a microwave and nuked until they exploded, or boiled in a pot. Junk that could be made and devoured in something less than 20 minutes, to be honest. There are always those days when you just need something fast. One insta-food was spaghetti. Comforting, fragrant, hot, and mostly healthy, I could use canned sauce and noodles to make marinara quickly. If I threw in some veggies, I’d be feeling good about my skills in the kitchen because I had successfully washed and sliced mushrooms. 🙂 Add in some sausage that I’d thawed hurriedly under hot water in the sink, and maybe a package of salad, and I’d have something on the table that actually looked like a real meal. The elimination diet makes such insta-food harder… but not impossible!

First, noodles. This was the easiest problem to solve! I went with brown rice noodles from Meijer for the picture above, but I love spaghetti squash too. Other vegetables, like zucchini, can be spiraled into “noodles” as well. Brown rice noodles have about a 35 second window of tasty to gloop, despite what the packaging may promise. I’d recommend sampling often and pulling them off heat right when they’re almost but not quite to where you want them to be cooked. I covered the noodles in sea salt, garlic, and olive oil to keep them from sticking … and because it was oh-so-good to simply steal a few straight from the colander.

Second, sauce. I wanted the “I-can’t-cook!” type, found in a can. It is very difficult to find a canned sauce that doesn’t have soy, corn, wheat, or sugar added. Meijer came through with Classico Riserva pasta sauce. It’s not the cheapest sauce, but at least for the money the taste is fantastic.

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Third, veggies. I added onions, mushrooms, slivered zucchini, and bell pepper. I’m a veggie fan. It also gave me another chance to dust the white powder and pink crystals of life, good ol’ NaCl, over everything… and here perhaps I should mention that I am on the exact opposite of a low-sodium diet. When I cook at home for my salt-sensitive family, I add a little Italian seasoning to the sauteing veggies and crank salt over my plate separately, and it seems to work for them. 🙂

Last, meat. This is perhaps the hardest. It is nearly impossible to find a chicken sausage without pork casing (why?!!?). Sugar is by far the most persistent additive I’ve found, with even Trader Joe’s Italian chicken sausage wiping out on this last hurdle. I can neither confirm not deny the rumors that Whole Foods has an Elimination Diet-friendly sausage, but online chatter seems to indicate this is a regional phenomena. (The fact that Whole Foods nickname is “Whole Paycheck” also means I tend to steer clear of the local store.)  Fortunately I come from a family that has long believed in the cost-savings and health benefits of a good pound of ground turkey. 🙂 Brown ground turkey in oil (I usually use canola and/or olive), adding in garlic, salt, pepper, and Italian seasoning to make a quick sausage substitute. I like to add extra basil and red pepper flakes for a spicy/sweet kick.

While the meat browns, add in your other veggies, then cover in sauce. Simmer. To me, it tastes like home.

Two important notes:

  • First, this has all sorts of veggies in it that are not low histamine. Right now I’m on a limited-histamine version of the Elimination diet, but I sense that my days of pepper- and tomato-laden kitchen experiments are going to be rather short-lived. While it wouldn’t fulfill my not-so-secret plan to find a quick-fix, bad-cook meal, there are tomato-less spaghetti sauces.I recently found this page, and it looks very promising: http://www.marinyacottagekitchen.com/recipes/archives/06-2013#.WNbDX2e1thE
  • I bought Trader Joe’s Vegan Mozzarella. First, it is NOT Elimination Diet compatible if you’re avoiding corn. Somehow I missed the corn starch in the ingredient list, even though I’ve tried to be diligent about twisting packages sideways and gently pulling aside flaps of plastic to squint at the tiny black ink under the glaring fluorescents in the dark hours of exhausted after-work shopping. I will confess. I tried a little anyway. The final judgement? … well, you can eat it, but it tastes like…melted plastic. It does look like cheese and melt like cheese, and perhaps if one grew up on Cheese Whiz and Kraft Mac and Cheese (and is allowed corn), it would even taste a little like “cheese.” After a tentative bite or two, I did the unthinkable: I scraped that part into the trash.DSC_0057

Confessions of a (chronically ill) graduate student

Today, I nearly cried.

Today someone offered to go grocery shopping for me.

She prodded me to give her a list of what I could and could not eat. She helped figure out what I needed. She didn’t care that in a few days I should be well enough to shop on my own – the important thing was making sure I had food I could eat now.

I am so blessed.

I am so ill, or am recovering from some test or procedure, etc., so much of the time that I would think no one would bother at all. I frequently feel that I’m a burden. Chronically ill = chronically needy. Why should anyone keep caring? But yet they do. And in such a way — the gentle ping of a text, “going to the store, need anything?” – the positive FB message “how about some…?” – the slightly more forceful call of “ok, so how about just what you need now? Have you eaten? What do you have planned for dinner?” —  that it makes me feel like I’m not some burden or good-deed prize for the day. She cares. So do many others in my life.

I am so blessed.

Elimination Diet Pancakes and Sausage

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Every week when I was young, we would travel an hour down the coast to visit my grandparents. We’d burst into their quiet cul-de-sac and race through a front garden fragrant with roses, dahlias, poppies, and dozens of other flowers I couldn’t name. And then after hugs and kisses and the requisite sibling fight over the morning comics, we would demand “Grandma’s breakfast.”

I couldn’t eat all of it now. Looking back, it seems like there must have been enough food piled on that wooden table to feed Paul Bunyan. When she went all out – which was actually fairly often – there was scrambled eggs and pancakes and sausages and hash browns and bowls of fresh fruit and juice. There was every sort of topping you could put on pancakes, to my young imagination – fresh fruit, jam, sugar, “lalaberry” syrup even, from a type of blackberry. Then there was sometimes sauteed vegetables, toast, or bits of cheese, if you were still somehow hungry.

It wasn’t McDonald’s type of hash browns either, frozen into a cake and deep-fat fried. No. Anything that was frozen or canned had usually been painstakingly processed by my grandmother. The vegetables usually came from the garden. The oranges for juice had been picked by my grandfather that morning. Both my mom and my grandmother make their own bread, and slices were lopped off a loaf willy-nilly and smeared with homemade jam. I grew up eating (mostly!) healthy, and I never even knew it. All I knew was that it was delicious.

When I had to start the elimination diet, I realized I’d eaten turkey sausage growing up more often than I had eaten pork. I’d eaten it my grandmother’s kitchen table, cooked in one of those heavy pans that were aged well, fried in some sort of oil that was poured from hand-thrown pottery jars and usually had been redeemed from previous cooking. Ok, so I wouldn’t recreate all of the recipe. I would use canola and a graduate student’s warped Ikea frying pan instead.

Next problem was the pancakes. I’ve tried gluten-free pancakes a few times. The first batch tasted ok, if you like fried hummus with maple syrup for breakfast. I really didn’t, and besides it wasn’t processed-sugar free, so it wouldn’t work for an elimination diet. I wanted something that was fairly fast and easy too, which meant avoiding mixing special flours or waiting for the batter to set. I’ve modified a recipe from one on the Bob’s Red Mill site. It is for fluffy pancakes, but the amounts of baking powder and baking soda seemed a little excessive even for that. Fortunately, I was subbing out the eggs for a 1/2 cup of unsweetened applesauce. I was a little generous with that part. It still isn’t a sweet recipe, and the dough was thick. I added more milk, and I dare say it can stand more. I also added a swirl of honey, which helped mute the sort of aluminum tang I always get from backing soda/powder heavy recipes and improve the sweetness. The batter can be spooned out, and then formed in the pan into the right “pancake” shape. I flattened them a little in the pan too. They were moist, soft, and still rather fluffy – I think you can easily reduce the baking powder and / or add in some more liquid sweetener without harm, although I’m not an experienced enough baker to tell. In the same vein of “I’m awful at this but I would put laundry money on it” I think that this batter will hold up well to adding things like blueberries, lemon zest, spices, vanilla extract, etc.

I ate 4 before realizing that I didn’t need to finish the entire batch by myself in 5 minutes. It only makes about 7 pancakes, although I can personally attest to the fact that they are quite  filling.

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This horrible picture is all I have because I was busy eating them. Yes. They are really that good.

Turkey Sausage

Ingredients:

  • 1/2 pound ground lean turkey
  • 1/2 tsp salt
  • 1/3 tsp ground black pepper
  • 1/2 tsp poultry seasoning
  • about 1/3 tsp garlic powder or to taste (I’m fond of garlic, so beware here).
  • canola or other neutral oil, for frying.

Instructions:

Take thawed (if using frozen) turkey meat and put into bowl. Add all ingredients. Using fork or hands, mix thoroughly. Form into even balls. (1/2 lb makes about 6 small patties.) Heat oil in frying pan. Smush balls with hand or, in a more safety-conscious method, simply flatten a bit with a spatula. Add patties to oil. Cook over medium heat until done.

(Side note: this will be a few minutes at most a side; I always thought that the almost charred exterior was “the good bit” growing up. Perhaps, like eating a lot of things that were good for me that I thought my older relatives loved (and so of course I imitated by loving too), but learned much later they hated, this was just good-natured manipulation by grandparents into eating what was in front of me regardless of whether it was nicely done or burnt to a cinder. It works.)

Pancakes

  • 1 1/3 cups, more or less, King Arthur Measure-for-Measure gluten-free flour
  • 1 tsp baking powder
  • 1/2 tsp baking soda
  • 1/2 tsp normal table salt
  • 1/2 cup unsweetened applesauce
  • about 3/4 cup almond milk (or whatever dairy substitute you’re using)
  • 2 tbsp extra-virgin olive oil
  • swirl (about 1 tbsp or more!) honey or other sweetener
  • EarthBalance for cooking

Instructions:

Combine all dry ingredients (and if adding cinnamon or other dry add-ins, I’d throw these in now as well) in a bowl. Mix well. In separate dish (I used the measuring cup I put the milk in) beat together the applesauce, almond milk, EVOO, and honey or other sweetener. Slowly add the liquid to the dry ingredients, beating well. Dough will be thick.Spoon onto hot skillet and cook at medium or medium low heat. To make a slightly flatter pancake, gently flatten once before flipping (makes it easier to flip too, of course). Otherwise these will be nice tall foundations for mounds of “butter” and floods of syrup. Watch closely. These will be too thick to really “bubble” at the edges the way I think classic pancakes do, so it’s easy to overcook. Makes about 7 pancakes.

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Elimination Diet Blueberry Muffin Boulders

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Recipe:

Ingredients:

  • 3 cups gluten-free flour (I used King Arthur 1-1).
  • about 1/4 cup gluten free rolled oats (optional, and probably best to skip, although I didn’t taste them at all)
  • 12 packets of stevia + 1/4 cup maple syrup
  • 4 tsp baking powder
  • 1/4 tsp salt
  • 1 tbsp cinnamon (or more!)
  • 1/2 cup unsweetened applesauce
  • 1 1/2 cups “milk” (I used unsweetened almond milk)
  • 1 1/2 cups blueberries (I used frozen, and I think fresh might work better, besides probably tasting better)

Instructions:

  • preheat oven to 375 (I’d really do 400 next time, particularly if you trust your oven. Which I do not.)
  • combine dry ingredients and mix well
  • make a well and add in liquid ingredients, stirring until incorporated
  • add blueberries
  • spoon generously into muffin tins well lined with paper (and consider spraying with oil as well, if you want to eat them the second day without paper – these stick more than the norm)
  • bake for 25-30 minutes or until a skewer inserted comes out acceptably clean. 😉

 

Periodically, you just get the overwhelming desire to be… normal. All right, I wrote it. The dreaded N word. The academic in me cheerfully (and unhelpfully) says “unpack that!” The practical and nearly tour-guide side reminds me that whatever normal is, I’m not likely to be it, now or in the future, so move on past this display, please. The financial side of me says “but you can’t afford to be normal!” My mouth, though, simply demands blueberry muffins.

Making blueberry muffins seemed like an easier thing to address than most of the rest of the above, even with IFM diet requirements, so I tackled that one first.

There are plenty of recipes out there for gluten free muffins. There are some for dairy-free. There’s a couple that are sugarless. In the end, the one I decided to try was a variant of a recipe I found here: http://thebigmansworld.com/2017/03/12/fat-free-flourless-blueberry-muffins-sugar-free-vegan-gluten-free/. But instead of using ground oats flour, I’d be using a 1-1 King Arthur flour, which had been great before for breading chicken and thickening sauces. I also had to change out the processed granulated sugar for another sweetener, and decided to use some stevia packets. I checked out conversion tables and tried to calculate and then ended up doing a mix of 12 packets of stevia and a 1/4 cup maple syrup. That last was because, as the stevia drifted up in clouds of fine dust, I discovered I actually don’t like the taste of stevia. Not in my mouth, not in my nose, not in muffins, nor on my clothes! I had a few oats in the bottom of the canister and thought that might be nice in the texture, since these things looked more like cupcakes than muffins to me. Not to mention, it might just get me enough counter space to finish the muffins, so in a handful of rolled gluten-free oats went. Finally, I thought that my oven was perhaps a little variable and I should try cooking at 375 instead of the recommended 400.

Dough prepared, added frozen blueberries, sampled again. Pretty tasty, although the stevia was an oddly bitter/sweet note. Ok. Time to spoon the mix into the muffin tins. I had way more dough than my 12 muffin tins could hold. Probably enough for 18, especially if I hadn’t sampled. I loaded the containers and told myself if my energy allowed, I’d make another batch as soon as these came out! Yes!

I put them in. I cooked for 20 and checked. The dough stuck so firmly to the bamboo skewer that it pulled the muffin, little paper cup and all, half out of the tin. I abandoned before the oven heat overcame me (hot ovens yes, but through those together with a slightly wonky body that can respond awkwardly to heat, plus bending over, and it suddenly became more chancy than I wanted). I tried again at 25… then at 30… then at 35, at which point (I think), I decided that enough was enough and they were done. Fortunately, they really were.

Unfortunately, the longer, slower cook time, different sugar, and oats meant that mine were in no way, under no light, fluffy yellow mounds dotted becomingly with berries. Was it the oats? The lack of sugar? A different flour? The frozen berries? You got me. The outside was fairly… firm. The inside, however, was great, especially slathered with melted “butter” – or  Earth Balance’s buttery-ish vegan spread. It’s not exactly a win. Still, to tell the truth, these things turned out better than the last batch of muffins I attempted. That’s not saying all that much, though, since the apple-pecan muffins with streusel topping had about the density of dwarf stars.

They don’t keep that well, which in my kitchen means that the muffins had, through some sort of instant petrification process scientists can only guess at, turned completely into small boulders by the afternoon of day 2. Or at least that was the fate of those I hadn’t pawned off on friends, in an attempt to get rid of them and gain some sort of insight into why mine weren’t perfectly uniform sunshine with freckles of blueberry. (This beguiling whisper of “try some” is in fact the battle cry of all amateur cooks, I’m now convinced). I didn’t have it in me to make the rest of the dough that night, or even the next morning. In the end I had a few spoonfuls (having helpfully left myself the spoon in the bowl) and ended up tossing the bit that was left over. I’m sorry, but I honestly can’t tell you that if you refrigerate this dough and make it in the morning (when the urge for hot fresh muffins is usually the strongest, seconded only by every other minute of the day), it will work. Or if it does in fact make 18 muffins, which would be my guess, provided you wouldn’t rather have it raw for breakfast.

And they did -temporarily at least! – satisfy my craving for blueberry muffins. 🙂