Screenshot from Prune for iPhone Like Clark Griswold, I get a little too excited about some holidays (and graduations, and weekends … ). I just want special occasions to be special, perfect and the best ever, and I can get a little frayed and unpleasant when they inevitably fall short. Which is why it can be somewhat of a relief for me to get past Halloween and Christmas each year, into the Lesser Holidays. I’m unlikely to work myself into a lather about whether my outfit is green enough for Saint Patrick’s Day. Actually, I have freaked out over not being able to find emerald-colored tights. But in general, I’m happy to hot-glue some pink hearts on a wreath, throw on a crimson cardigan, then eat at a non-Romance-language restaurant with my husband (to avoid waiting three hours to be seated -- but don’t take this tip from me and go clogging up the best Indian restaurants Feb. 14). So January, February and March become less about special days and more about improving upon everyday days. Do I need a less obnoxious (but still obnoxious enough) alarm clock? Is there a way to make long meetings less soul-crushing, or a new phone game I can play while I inevitably miss half the meeting because I’m in the bathroom? Is there a quick and easy way to make my co-workers stop whistling out of nowhere? In honor of the annual Holiday Doldrums, the month versions of Monday and Tuesday, here are some ways for those with and without IBD to slightly improve upon average days: For waking up in a decent mood and staying that way:
Ways to distract yourself while in the bathroom (don’t judge me – everyone does it and you’d go crazy with IBD if you didn’t):
From Amazon.com cubicle-door product page. Try not to look like this guy when you pull it shut. And when you spend half your time in the bathroom, you have to find ways to make the life you do have at your desk more efficient and eliminate distractions:
easyGopro squatting stool, Amazon.com Make meetings as tolerable as possible:
And maximize comfort and good sleep after a long, noisy, interrupty day at the office:
Have you been specialing up your average days already? Do you have a better way for shutting up or tuning out co-workers? Have you tried the squatting stool? Share details in the comments below.
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Photo credit flickr/Andy Porter I read Cheryl Strayed’s book “Wild: From Lost to Found on the Pacific Crest Trail” a few months ago, and I just watched the movie. And I imagine I felt similarly to many other deskbound people who had the urge to put their jobs on hiatus and shop at REI, because those are the two easiest, fun parts. But when I watch it, or hear anyone talk of feats ranging from the PCT or Appalachian Trail, or even just a 5k or a demanding career, I get a little bitter. I’m bitter because, like Strayed, I have demons. This isn't really a spoiler, but be alerted nonetheless: Cheryl Strayed develops severe issues with drug use and adultery in her 20s after the traumatic death of her mother, then tries to heal through taking a grueling, extensive trek by herself. I had the urge to put my job on hiatus and shop at REI, because those are the two easiest, fun parts. My demons involve chronic illness with a smattering of OCD. And this demonology demonstrably benefits from being whipped back into submission with fast, hard running or other vigorous exercise every single day. It really, really benefits. At first. But if I run 3 miles one day, two days later I will be flu-level wiped out for a week or more. Which my angsty brain slurps up as an indication that I’m weak in character or body or both, and that I can’t do anything with my life. And then I can barely even slither my way to work, let alone run a race, and why did I kid myself into feeling free as the wind when where I really belong is with Netflix? It’s not like Shelby in "Steel Magnolias" or anything, but my limits are more than eager to present themselves whenever I get a little excited about doing something physically impressive. Like "American Ninja Warrior," or even pruning the bushes in my yard on a bad week. Cheryl Strayed’s slow march was not easy, physically or emotionally. But she got to plan, save money and set off without concern for her lupus or rheumatoid arthritis acting up. She didn't have to bring dozens of those chemical cold packs for her biweekly biologic injectables. And she didn't have to get COBRA coverage in case she needed emergency cobra-bite treatment (maybe she should've done that regardless of health status).
I’ve never been one for patience or moderation. But I also haven’t given up yet, despite the vast amounts of medical tests, surgeries, doctor's appointments and statements of benefit that come with IBD. And I'm still hopeful that each new day, month, year might leave me feeling better. So I guess I’m reluctantly training for patience by default (in lieu of a 5k). And in the meantime, there are plenty of ways to be mildly wild, like using designer luxury toilet paper, sleeping in ridiculously late on the weekends, or installing an enormous TV in your bathroom. Photo credit flickr/Andrea Goh The holidays are largely about food, and there’s just no way around that in most families. You can distract yourself from rich holiday foods with hygge. And there are strategies for having something satisfying to say to those who have opinions about what you don’t eat. But ideally, you’d like to also be satisfied by what you’re eating. (Everyone seemed weirded out by me eating my personal vegan gluten-free microwave pad thai at the office holiday celebration. But no one forced them to order pizza.) What’s worked for me is to make as much food myself as possible (and making it ahead of time as much as possible), adapting traditional dishes by swapping out ingredients. But this can be daunting, without some cheats and links to get you started. I hesitate to even talk that much about diet specifics because everyone’s symptoms, triggers and disease are so different. There’s no universal IBD-safe swap for stuffing. But that’s kind of the point of the list below. You need to figure out what doesn’t and does work for you, and then figure out how to make food from that limited pool of options so that you feel included, happy and undeprived. From lots of research -- and trial and error -- here are some common problem ingredients (yours may be totally different! Or maybe food isn’t a symptom trigger for you! Awesome!) and possible alternatives: 1. Wheat: There are so many alternative flours, and additives to make them stick together better (like how gluten helps wheat stick together so well). Some of the best gluten-free flours are blends of multiple types of flour, and the best ones usually include at least a little white rice flour and a binder like xanthan gum. 2. Milk: So many delicious options! Full-fat coconut milk is creamy and delicious; low-fat is OK. Almond milk is bigger now, but soy milk is still around. Hemp milk with breakfast quinoa is great. You’ll need to experiment with brands and flavors to suit your taste. 3. Cheese: There are fake cheeses, including soy-free ones that some swear by, but sometimes they turn my stomach. You can use tofu, certain pureed vegetables, or coconut cream to sub for cream cheese in cheesecakes. 4. Butter/cream: Extra virgin coconut oil is a great substitute in baked goods because it has a buttery flavor and is fatty, so biscuits still get that soft-crispy texture combo and buttery taste that make them so good. Olive oil works for pasta and salad dressings, and I even like it in some cookies and pie crusts, but lots of people don't care for its strong flavor in baking. 5. Eggs: For one or two eggs in a bready baked good (or for dipping meat or veggies to make breading stick), substitute 1 tbsp of ground flaxseed meal and 3 tbsp of water for each egg. Combine the flax and water for 15 minutes in the refrigerator before using. This grainy congealed goo is called a “flax egg,” and it works really well. 6. Lots of eggs: Anything that involves a bunch of eggs, like custardy pies or quiches, are going to be the hardest to substitute for. Look for a vegan recipe that uses alternatives like pectin or gelatin, or full-fat coconut milk. 7. Soy: Instead of soy sauce, try “coconut aminos.” It’s a little sweeter than soy sauce but you could add salt. Otherwise, make sure to check labels carefully for unexpected added soy. 8. Corn: Quinoa flour works well in baked goods, especially when mixed with other flours. Makes good imitation cornbread when combined with coconut milk and coconut oil, and really great chocolate chip cookies! (You can make your own chocolate chips!) 9. Red meat: Is there a substitute for red meat? Grilled ground beef still smells amazing to me, and I have organic free-range once or twice a year. I’m told that some black-bean burgers are amazing, if they’re spiced right. But I can’t say whether it fills the same slot. 10. Sugar: I seem to be the only person on Earth who is allergic to cane sugar. And of course, cane sugar is on trend right now as opposed to beet sugar or corn syrup. So that’s just GREAT. But fortunately, there are good subs. Coconut sugar is delicious and subs 1:1 for regular sugar, as does date sugar. For liquid sweetener (when you might need to sub corn syrup), use honey or maple syrup. 11. Appetizers: Use alternative-flour chips (made from white bean, chickpea, or lentil) with hummus. (Some chips made from these flours are pretty gross. But those three I linked to are really good.) 12. Salads: Stir-fry or steam your greens first so they’re easier to digest. Use vegan mayo in potato salad or broccoli cole slaw. Before you angrily stash away your grandmother’s cake-batter-stained cookbook, see if you can use the same classic recipes but with new ingredients. I did this at Thanksgiving with quinoa “cornbread” and it tasted and felt (to my mouth) great! Did it look anything like cornbread? Nope. And I think that scared off other potential eaters of it, meaning there was more left for me.
To get these supplies, try Amazon, the organic section of a regular grocery store, or a health-food grocery store or local co-op. If you’re in the metro Atlanta area, try Sevananda or Rainbow Grocery. And when you do need new, specialty recipes that don’t require an introduction of “this is a special dessert for Katie” or “for vegan cheesecake, it’s not that bad,” try these websites:
Please note: None of the links or mentions above should be seen as endorsements, because I did not get paid for them, so that would be unfair, to me. It's OK if you just make them anyway, because I sure didI chose death (curried pilaf). Yurei Izakaya, a ghost-themed restaurant in Kichijoji, Japan. © 2015 Katie McLendon Stepping onto the streets of Tokyo for the first time four weeks ago was like walking into The Lego Movie’s “Everything is Awesome!” sequence, and I mean that in the best way possible. Everything was awesome in Japan. Seeing the wild snow macaques in person that I’ve been watching in nature specials for decades blew my mind and exploded my heart. I just spent 11 amazing days in Tokyo, Kyoto and the Japan Alps, and I can’t shut up about it. At some construction sites, they use Hello Kitty barriers; look! Outside Shinjuku Station, Tokyo. © 2015 Katie McLendon But healthwise, some things were not awesome, like jetlag and constipation. And my adrenaline-fueled legs, which complaintlessly propelled me and my suitcases up and down countless flights of train-station stairs for more than a week, suddenly dumped all the built-up pain and exhaustion on me when I hit American soil and the spell was broken. This is not my first international trip, so you’d think I maybe would’ve learned more lessons from before and shrewdly applied them all this time. I once spent 6 weeks on a research trip in the rural Caribbean; four major medical issues cropped up, and I had to fly back to get a dose of Cimzia). And in Saint Lucia, I ran out of medication and flared hard while on an all-inclusive resort (which did NOT include medical care, unfortunately). But I’ve found there are plenty of health-related travel mistakes to last a lifetime, all around the world. Japan has excellent medical care and sanitation, so I didn’t have to worry about needing to be medevac-ed out with a blockage or contracting an exotic stomach bug (a key upside for Japan as a destination). But any international long-term travel comes with its own set of challenges, some of which apply over country lines and some of which don’t. Here are the lessons I (hopefully, this time) learned: Note: The tips from my non-overseas travel post still apply for the most part, as does the warning that international travel for chronically ill people requires way more preparation than any internet post can provide. You should ask your doctor about any vaccines or travel clinic consultations you need. And you can also check the CDC Travelers Health website for tips on what you might need to do in advance or while abroad to help you stay healthy. Screen shot from SeatGuru.com. 1. Seats. Overseas flights are long flights, so get decent seats. This isn’t always the same thing as expensive seats (unless you’re talking about first class, in which case down comforters, deep-space-mission sleeping pods and diamond-encrusted hot fudge sundaes absolutely does mean good seats), and it doesn’t always mean the same thing for everyone. Go on SeatGuru and enter your flight info, and it will give you ratings and specs for your seats. I will say that the bulkhead extended-legroom seats are great for your legs (we had them coming and going to/from Tokyo) and people with IBD or on certain medications can have a higher risk of blood clots if sitting still for long periods. But the non-legs parts of my body didn't really like it. You usually don’t have a seat to stow one of your bags under, which can be annoying if you need to get out more snacks or different reading/watching material out of the overhead bin, and you’re trying to do this without bringing heavy luggage smashing down onto sleeping fellow passengers. It can also be annoying to be in these seats if they’re near the bathrooms, which they often are (also the designated stretching/yoga-posing/new-friend-making/bored-staring-at-me spot, apparently). But if you have a tendency toward urgent diarrhea and seconds can sometimes count, the annoyance could be worth it. 2. Meds. Pre-bag your (non-narcotic) meds by dose, and keep them in your carry-on with a note from your doctor, and possibly also the bottles or labels. Do this a week before your trip, or you will run out of time the night before and tell yourself it’s unnecessary (yeah, that was me). The little bag will go in your pocket every morning and you'll actually take them, instead of rushing out the door in excitement for the temples and ghost cafes on your itinerary (or to catch the next train, which will almost certainly be right on time). For bedtime doses, it’s usually easier to remember to take them since you’re back at the hotel, but in a puddle of exhaustion and sake you might talk yourself into closing your eyes and lying down for just a second … . A little baggie with your nightly dose in it takes some resistance and thought out of it when you’re dead tired. Bring over-the-counter meds, too, even if you don’t take them every day. It's obviously hard to read the labels of another language, even if you have some basic skills in the language (and if you’re having to read the labels of medications, you’re probably not at your best, so it’s better to not have to). So, if you every once in a while need Miralax, Lomotil, anti-spasmodics, and so on, then pack them (in your carry-on!), and pack a little more than you think you’d need. I ended up throwing out my excess OTC meds near the end of the trip to cram in more Ghibli Museum gift shop souvenirs, but it was good to have it there. 3. Luggage. We had several requests for Japanese swords as souvenirs, and I knew I'd want to buy everything I saw, so I took an enormous near-empty suitcase -- it came up to my chest. This turned out to be a significant inconvenience -- in our teeny tiny hotel room, and on rush-hour trains. Besides what you need for health and comfort, pack light going there, and either bring an empty duffel bag or folded-up cardboard box to fill with souvenirs at the end of your trip (and then check it at the airport, or ship it back to yourself through your hotel. It's so much harder to zip around on the JR trains when you've got more bags than limbs. There are also luggage-delivery services to many hotels, but there can be significant delays in how fast they'll arrive. 4. Sleep. Pack a good travel neck pillow (again, different for everyone, but browse reviews on Amazon), eye mask, and sleep headphones, and make yourself try to sleep at every opportunity (my strategy: listen to boring podcasts you've heard before, or nature sounds). OK, my actual strategy was to lose consciousness as soon as I hit the headrest on the flight home, punchily watch a Pixar movie, then scarf down gluten-free biscuits from our hotel room service that I stashed in a (clean! unused! from a fancy hotel!) plastic laundry bag. The bag also served as a great crumb-catcher. I didn't know how to find Ziploc bags. Shut up. 5. Food to pack. Bring lots of snacks from home. Yes, part of the adventure of traveling is trying new things, but it can lead to a little too much "adventure" for those of us with IBD if we don't calculate our risks well. If you start to feel sick, your gut will crave familiarity. Even if not, your gut may get a little homesick anyway, so bring a stash of bars and chips. I'm a breakfast girl, so I regretted not bringing instant-oatmeal packets for when rural restaurants weren't open for breakfast, but those Park Hyatt rice-flour biscuits, and quinoa with rice milk and bananas, made up for it. If you're lucky, your hotel will have a breakfast buffet (or your ryokan may offer meal service), and this often includes rice porridge, eggs, fruit and pastries. 6. Itinerary. Don't change hotels too much, and try to build in flexibility for, if not rest days, then long-haul-travel-free days. Have a list of must-dos separate from want-to-dos. Everything takes longer than you think it will, because you will get lost or get on the wrong train or have to spend 45 minutes in the bathroom because you went three days without being able to go and now whoa. But don't worry, because it will probably feel like you were in Japan for twice as long as you actually were, from the extreme novelty of it all. You'll find that you're not just nostalgic for the big-ticket items like sumo shows and hanging out with snow monkeys, but also just riding the train while eating from a bento box, buying novelty socks, and using the ATM at 7/11. Wild snow monkeys of Jigokudani Yaen-koen. They really get this close to you. © 2015 Katie McLendon 7. Meals. Request special meals from the airline as soon as possible, if you need them. Bonus beyond eating more safely: You probably will get fed before everyone else on the plane (except for first class, of course), and the food is often better than normal airplane meals or snacks. I had chicken breast with quinoa, and salmon with steamed vegetables, with a gluten-/dairy-/egg-free shortbread cookie or muffin. At hotels and restaurants, don't assume they can't accommodate you -- I was thrillingly surprised by rice-flour biscuits and red-bean-topped sweet-rice dumpling desserts (and even canned Suntory whiskey and club soda highballs in vending machines!) that fit into my diet. But also, sometimes you just have to order by picture, so do your best and take some digestive enzymes or whatever you typically do to make iffy food go better, and try not to worry too much about what can’t be helped. 8. Money. You don’t want to end up having to skip a meal (or eat out of a mysterious vending machine -- although I do recommend that for those who can) because you don’t have the cash you need to buy healthy and safe food. I was surprised to hear (and experience) that even Tokyo is super-cash-based, and then I was quickly loaded down with change in coins that ranged in value from about $4 USD to less than a penny. They have a lot of coins. 9. Wifi. It’s so important. Just in general, but also for researching restaurants, attractions, walking directions, phone numbers, urgent-care clinics, etc. If possible, arrange for a mobile wifi router to be pre-delivered to your first hotel, and then you can ask your last hotel at checkout to ship it back to the wifi company in the prepaid envelope. Yes! It’s awesome. Just don't forget to charge the router every chance you get (tip: some trains include power outlets). 10. Health care. Before you leave, look up medical clinics for English-speaking foreigners, plus know how to ask in Japanese for an English-speaking doctor or hospital or translator (they're gonna know you're speaking English, but just in case). Which leads us to … This pretty much sums up our trip. Hachiko statue, at Shibuya Station/Shibuya Crossing. © 2015 Katie McLendon 11. Language. Learn how to say:
Even when you say something you think is in the local language, you may be met with a confused but apologetic look and nervous laughter, or just outright laughter (as a cop gave me outside of the Ghibli Museum), so have a thick skin and sense of humor (or go vent or cry privately, into a Suntory highball). 12. Destination: As mentioned above, Japan has the benefit of being both exotic (at least to Westerners) and relatively safe for travel with IBD and on immune suppressants, at least compared to many other possible destinations. Think about what you want out of your trip and what your gut needs, and try to make those overlap as much as possible. Don’t assume that you “can’t go anywhere because of my Crohn’s” (pout), but also don’t assume that you’ll be able to get a fresh ice pack for your Humira syringe on the Jeep ride into the Amazon rainforest. And while we’re talking about assuming … Shinjuku, a nightlife-heavy neighborhood of Tokyo. © 2015 Katie McLendon 13. Don’t assume … that there will be:
Don’t assume that you’ll take your meds just because you always do and you know how important it is. Or that you’ll stay on a sensible diet because the local diet is mostly rice and fish (there's plenty else here to tempt you. Like dozens of different Kit Kat flavors, or special Halloween cakes at department stores). Or that you'll just figure out how to get a prescription medication if it turns out you need it. And don’t assume that you’re a failure if you do none of these things right; you can still have an amazing trip while your gut is busy hating you. People without chronic diseases get sick while traveling, too; sometimes it can't be avoided. But as much as you can, come reasonably prepared and be careful, so instead of frantically searching for Japanese laxatives, you can focus on snow monkeys and whiskey and yakitori bars … or on frantically trying to purchase and pack five souvenir samurai swords. |
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