long post about travelin’ with food drama

One of the hardest (and most disappointing) aspects of having a lot of food-related health issues is that traveling is more than often really really hard. I keep thinking that I will get used to it, but it’s a real annoyance.

Most of the time, I travel with people who care deeply about my ability to function (and not spend the night in my hotel room getting incredibly sick) that they find ways to help me make traveling with food intolerances less frusterating. I’m extremely grateful for these people. But the reality is that even though it’s trendy to eat “gluten-free” these days, there is a lack of knowledge in the general public about the seriousness of the issue for those of us with actual health issues related to gluten. For those of us who don’t have an option, it’s much more than just a diet change: it’s a serious way of life that requires calculating risk in ways I have never had to before.

For example, this weekend I went to a Gender and Science Research conference in Philadelphia with my academic advisor April. We were invited to participate because of our research with urban girls and the after-school science club we run together. It was an honor to be invited. The trip was paid for in full. As one of the attendees, I was asked over email if I had any dietary issues. It’s hard to know what to write when you know you’re going to be held up in a room with 50 other people eating food prepared by a museum and a hotel. Trusting that some one would at least glance at what I wrote, I went with short version of the following:

I’m completely gluten intolerant. Soy is a serious issue, including soy lecithin. (Fun fact: Soy lecithin is derived from soy beans. It’s technically considered the “waste product” produced during the process of making soybean oil, but it’s widely used as an emulsifier, especially in chocolate because it keeps the cocoa and cocoa butter together. I’ve found that it’s almost always in diary-free chocolate as well. Some people claim they can eat soy lecithin even though they can’t eat straight up soy. I constantly mess around with small doses of the stuff and rarely is it okay with my body.)  Moving on: I can’t have most diary. Meaning I can’t have products from cows, but I can eat eggs, and some goat cheese, but only as long as it’s made with vegetable rennet and not animal rennet (which is usually from cows). Who reads those labels and even thinks about what rennet is and where it comes from? No one but people like me. And most labels just say “rennet” so you can’t tell anyway unless you call and ask the producer. (Just a heads-up: 99% of the time I ask, it’s animal rennet. Turns out vegetable rennet is more expensive to produce and therefore more expensive for cheese makers to use.)

I figured that my chances of a museum and hotel cafeteria figuring out any labels in a massive kitchen were slim to none. So, I filled out the form and wrote “I’m used to traveling and figuring out my own food, so I’ll come prepared.”

Coming prepared means coming with 4 Larabars and a bag of salted almonds as backup. (Heads-up #2: Half of Larabars contain dairy. Read the labels to be safe. I’m addicted to the peanut butter and jelly flavor. If you’ve never tried Larabars, they are the expensive way of eating paleo nuggets.)

Day #1: My food the first day of the conference consisted of a lunch of dry lettuce and a few cherry tomatoes with no dressing (can’t risk the dressing when you don’t know where it comes from and what’s in it) and 4 dill pickle spears.  Good thing I love dill pickles. I took a risk and had a scoop of potato salad. I got lucky and didn’t get sick from it. (Some mustards contain gluten, which was my main concern with taking the risk, but I had skipped breakfast and it was 1:30 and  lettuce and pickles isn’t really filling.) Dinner was more dry lettuce and a piece of salmon made special with no butter or breadcrumbs. The very kind wait-staff brought also brought me some fruit.

Day #2: Breakfast at the hotel was 4 pieces of extremely salty bacon, some melon cubes and coffee. Despite having an omelet station, they wouldn’t make me eggs minus butter because they had no other oil to cook them in. I got lucky at lunch and ducked out to visit Anthropolgie and happened upon a farmer’s market where I found this gluten free flat bread and this hard goat cheese made with vegetable rennet. What I love about small businesses is that when you buy from them, you are often talking to the person who either made the cheese or knows what’s in it. The guy looked right at me and said “Oh yea, vegetable rennet for sure. That’s all we use.” I had a hard time not asking for a hug.

Dinner in the airport was rosemary flavored almonds, olives, and wine.

There are my thoughts on this trip:

*It was literally a 40 hour trip so there wasn’t much time to actually look for food. I got lucky happening upon a farmer’s market in the middle of the city. When you have to depend on hotels and museums to feed you, it’s hard to trust that what you are getting comes with a guarantee. And by no means do I ever blame the staff that served me: they have no idea and that’s okay. I’m happy to eat lettuce greens dry and some fruit. But I didn’t get to eat the Philly cheese steak appetizers, which was kinda sad, but then again, all that melted cheese on bread makes me queasy now.

*I’m very grateful that there are small businesses producing gluten, dairy and soy-free food like Larabars. Maybe in my next career, I’ll invest in a business that’s focused on helping people like me get through traveling.

*Taking a short trip to a city like Philadelphia reminds me just how much amazing food I will be missing out on for the rest of my life when it comes to traveling and experiencing culture through food. As someone who grew up near lakes and farms, I’ve always felt a strong connection to local food and food systems and it’s disappointing to realize that no matter where I go, whether it’s in the U.S. or internationally, it’s very likely I won’t be eating many of the things that my friends and family enjoy. I’m glad that I got to experience France and Italy in my early 20s and ate all the bread and cheese I could possibly fit in my body in 10 days. No regrets there.

*As much as I love traveling, it’s nice to be home where I know all the food I’m eating is safe and I don’t have to live in a constant state of panic that if I risk something, I may end up regretting it. Yay for home-made food!


for real?

 

*my sister-in-law made me gluten/dairy/soy free cookie dough bon bons for my birthday. for real. i still can’t get over them. they made me giddy. literally: because i haven’t had sugar in a month and these bon bons were my first birthday sugar. hyp-er.

*they were so good that everyone at our 4th of July cookout tried them and couldn’t believe they were gluten/dairy/soy free. yum-e.

*here’s why this is one of the best birthday gifts ever:

being diagnosed with digestive issues makes you put a lot of things in perspective. for example, i never ever ever take for granted how much effort it takes to cook and bake for someone who has food allergies. it requires a lot of time. baking and/or cooking for someone like me requires the following:

1. finding a recipe (usually online) that is gluten, dairy AND soy free. a lot of times, gluten free recipes include diary and/or soy–both of which i have to avoid. so searching for a recipe can often require multiple attempts to “find the right fit” for someone like me.

2. figuring out ingredients that are super odd for most people. when i first learned i had to bake gluten/dairy/soy free, i realized i needed to figure out what flours i can use (almond flour, coconut flour, tapioca flour, etc) and how they changed textures and flavors. i needed to figure out what the heck xanthan gum was. (it’s not gum you chew; it’s an ingredient that adds volume to baking with flours that do not “rise” the way wheat and grain flours do.)

3. reading labels. obsessively. knowing where the hidden things are. i.e. whey. whey = cow’s milk/dairy. most people don’t think about this. they see “gluten-free” and think: all is well! let’s do this! and then they bake me bread and i look at the label and have to say with guilt (usually because the person spent money and time making me something special): i can’t have this. (this has happened with mom a few times with bread mixes.)

4. having money to buy ingredients that are often triple the cost. some nut flours can cost $9-10. chocolate chips: $5 a bag. candy bar: $3 minimum. maybe more. the price tags can be shocking when you’re not used to them. so, if someone is willing to spend that much, it’s a big deal to me. there are no $1.99 cookie mixes in my world.

all of these reason are why i don’t bake for myself anymore and why it means so much to me when someone takes the time to figure out a way to feed me. because it takes all that effort, care, attention, and love to do it.

so, thanks gretchen: my amazing sister-in-law, who showed up tuesday with two containers of cookie dough bon bons made just for me. i couldn’t be more thankful for a more loving and perfect present. you’re the best.

 


self-care: old habits die hard

i’m feeling right back where i was 3 months ago when i wrote about how the level of commitment it takes to practice self-care, especially when you’re stuck with some significant dietary issues. i’m in a slump and honestly haven’t been trying very hard to get out of it. mainly because i’m too distracted with school and too tired to care when there are actually moments in the day to figure out food. three weeks of unexpected illness followed by a complete absence of appetite threw me into a new year’s slump. my old habit of walking to the fridge, opening it, looking in, closing, and walking away has resurfaced.

what’s troubling about this habit is that it puts me in a weird place. like anyone else, when my body has no fuel and is still running all over the place, things go downhill fast. i want to sleep constantly, and give into naps at 5 p.m. on a regular basis. i feel distracted and distant and unsettled. i don’t take any of my vitamins or probiotics. in desperation, i eat a burrito bowl from chipotle (the only “fast-food” i can eat) three days in a row because i don’t know what else to do and can’t get myself to make a meal or snack or anything but almonds and oranges. and then end up with a killer stomach ache from too much rice and black beans. you would think i’d learn my lesson on day 2.

this is a cycle i’m in. it’s consistent. i happens every 2-3 months. you could track it on this blog. my therapist swears by it. i’m trying to determine if it’s simply food-self-care burn-out or something more. but i’m beginning to think that it just boils down to frustration: i hit a wall and suddenly i just don’t care anymore. i don’t want to practice self-care. i want a time-out.

i love to cook. but i’d also love to hire a personal chef who knows all of my dietary issues to drop soups and stews off every 2-3 days so i can stop thinking about my health for a few weeks. but then, who doesn’t want a personal chef…

i just ate the most beautiful eggs my friend meredith gave me, straight from her chicken coup. and i’m sipping detox tea in hopes of getting my body back on track. today, i’m making a massive pot of curried lentils and sweet potatoes. i’m hoping that getting back to my old eating routines will help kick-start my appetite and pull me out of this lull. and not write another blog post like this for a very very long time.

 

 


nutty

it’s hard to tell people you can’t eat anything they make you, especially during the holidays. in years past, december would be filled with little boxes of cookies and candies and other holiday treats full of sugar and whey and gluten and soy and other lovely ingredients that are now on my enemy list for life. i’m going into my first holidays without any of my meaningful holiday treats i’ve loved baking and eating since i was a little girl in my mom’s kitchen, dipping homemade donuts into creamy glaze and anxiously waiting for them too cool so my 3 siblings and i could eat them all. i’ve written about my feelings around loosing foods that are meaningful to me and i’m expecting this holiday will be a mix of realizations, like: o right, i can’t that any more….

the good news is:
*it’s december 5th and i haven’t landed in the hospital in exactly 1 year. this is a serious cause for celebration.
*my family, especially my sister and brother, are bent on making me gluten, diary and soy free goodies for the holidays. my brother even made up his very own cookie recipe with pistachio flour. genius!
*i can now buy gluten free, dairy free donuts in the freezer section of my grocery store, if i ever miss them that much.
*i have truly sweet and amazing friends:

i came home last thursday to package full of spiced nuts, made by my childhood friend beth and shipped from kentucky. beth wanted to make me something but wasn’t sure what i could eat since i’m off sugar and most grains. she went with nuts and did her best to keep the sugars low. i’m not sure how to explain how giddy i was when i opened the box and there were 5 packages of the following: smoked paprika almonds, spiced pecans, candied macadamia nuts, vanilla roasted walnuts, and curried cashews. all made from scratch. she included all of the recipes so i could see what she used and make them for myself once i ate all of these.

sweetest, most thoughtful gift package ever for a gal with food drama and on detox. beth, you are awesome. xo!

recipes: curried cashews, vanilla roasted walnuts, candied macadamia nuts, smoked paprika almonds, paleo spiced pecans.
(butter was substituted for olive oil.)


fun facts with deficiencies

i had blood work done last week to check-in on any deficiencies that might be hanging out, which seems ludicrous given my diet, but you never know. over the last 2 years, i’ve gotten very used to needles and having blood drawn. however, i have not gotten used to techs-in-training. last tuesday, i walked into the back room of the clinic and felt the dread rise in my body: the girl getting ready to draw my blood was young, inexperienced, and wore an “in training” tag clipped to her white medical jacket. the nurse training her did not seem confident in this girls ability to get a needle into my vein without going through my arm, but she let her do it anyway. as a college professor, i’m all for student training in medical settings. my university has a medical school attached to my local hospital, so i’m surrounded by residents. however, when a nurse in training is about to push a sharp needle into my arm and the nurse keeps saying, “no, not that way, no try it from this angel, no apply pressure here” before she starts, my belief in apprenticeship learning and learning-by-doing fly out the window.

it wasn’t pleasant but i survived it.

i’ve been pretty deficient in a lot of things for the last few years, which hasn’t been surprising, given how much my body has refused to digest much of anything without drama since 2008. but i’m 11 months into a gluten-free, diary-free, soy-free life and i’ve been really hoping things were gonna look better this time around.

they did! my tests came back with close to “normal” levels in all areas except vitamin B, common for most people with Crohns, Celiac and other digestive issues.
dang vitamin B: always hating on me.

here are some fun-facts about having a vitamin B deficiency:
*being low in vitamin B2 and B6 can cause very greasy hair/scalp issues (check.)
*eating foods high in vitamin B16 (beans: check. meat, fish poultry: no check) can control sugar cravings. (hmmmm…)
*severe lack of vitamin B can lead to tingling in toes and hands (check.)

and the list goes on.
i’m adding one more pill to the pile: B complex.
next time i get blood work done, i’m hoping for a perfect score.

 


my 13-year-old skin

here’s something i didn’t know: when you go off the birth control pill (after taking it for 8 years) and go through a massive dietary detox for 4 months, you will wake up one morning looking like a 13-year-old. suddenly, all the toxins in your body will up and locate on your face and decide to take a few weeks (or months?) to work their way out. not wanting to go back on the pill or cheat on your detox, you are stuck with your “new” 13-year-old skin until it remembers that yes, you are 32 and no longer in 8th grade.

while i knew my hormones might be all kinds of whacked-out since going off the pill in june, nothing really prepared me for the onslaught of blemishes that surfaced in the last 3 weeks. it was like they multiplied every 2-3 hours. in fact, i haven’t had that many blemishes at one time ever in my life. it was starting to freak me out.

i went for a facial last weekend at a friend’s salon where they use 100% all natural, organic products. while talking with the esthetician about why my skin had decided to go back in time 19 years, she told me i shouldn’t be surprised: i’m 32, off the pill, and have been detoxing my body for months. it’s the perfect storm of age, hormones and diet. she gave me pumpkin peal and sent me on my way with directions to drink more water, stay on my detox diet, and stop freaking out.

it’s amazing to me how much diet impacts so many aspects of the body. it never would have occurred to me that detoxing multiple times over the course of 4 months could impact my skin so much, but in hindsight, it’s kinda silly that it didn’t occur to me, given how my body responds to strongly to everything i eat and drink. it’s so fascinating to me: each week of this digestive journey i wonder what’s gonna happen next…i hope my 13-year-old skin is short-lived.

 

 


letter

dear sugar,

my body despises you. and still, i crave you.
i’ve been having flashbacks to my august family vacation, where i ate a lot of you.
i think this picture sums up the extent of my desire for you back then:

given how much you wreck my body through sneaky things such as wine, apple cider, and bananas, i’ve sworn you off until thanksgiving day. and then again until christmas.

it hurts me more than it hurts you.
*rach


self-care

one thing i continue to learn on my digestive journey is that practicing self-care takes commitment. taking care of our bodies takes time and energy–time and energy that at times i think i will never run out of and at other times i think i’ll never have enough of.

my attempt to add things back into my diet two weeks ago went really really bad. instead of attempting to fix the problem by adjusting my diet, i shut down. i was a month into an extremely busy semester and stopped trying to find things to eat. i developed the habit of walking to the fridge, opening it, looking in, closing it, walking away. most days, all i had to eat before 3 or 4 p.m. was tea or coffee and a few almonds. the results: i had two anxiety attacks, no energy, and was a shaky mess.

so much for self-care.

when your diet is already so limited, it can feel exhausting to have to keep up with it. to have think about every thing that goes in your mouth can start to feel like a chore. there are no “fast” meals when you’re limited to cooked veggies, a limited amount of fruit, meat, a few eggs, and nuts. in order for me to have “smooth” weeks, i have to prep everything i eat days in advance: hard boil eggs, soups and stews, nuts to go. i used to stay on top of this really well. but i think 12 weeks of the detox on top of school starting threw me out of the loop.

yesterday, i was reading an essay by Alice Waters, founder of the Slow Food movement. she reminded me of what i haven’t let myself accept in the last few week: that preparing food and taking care of our selves is pleasurable. She writes:

We treat preparation as drudgery. Besides, other people are better at it than we are. Cleaning up is drudgery, too. There are more important things to do. We have been told that work is here and pleasure is there. But in fact real pleasure comes from doing. Work can feed our imaginations and educate our senses. If somebody else does it all for us, we miss out on the real juice of life.

last sunday, i spent the afternoon cooking and working with my friend michael. i made curried lentil sweet potato soup. he made roasted veggies and pumpkin quinoa. it took time. we broke from our school work multiple times to prep, stir, and watch pots of veggies morph into stews. it helped me get back on track: eating regularly, searching for new recipes, scheduling time to cook this week. it made me realize how much i need other people in my life supporting me during times of food-exhuastion. cooking with a close friend reminded me how i understand food as relational and loving. C has reminded me of this, too: making me dinner 3 times over the last week at times when i felt like i’d rather go to bed or keep working that make myself something.

accepting that my body will not allow me to eat what most people can is challenging. emotional. there are good weeks and bad weeks, good days and bad days, good meals and bad meals. what you’re not told when you are diagnosed with food allergies and intolerances is that part of the process is grieving: grieving the loss of foods that hold very important spaces in your memory in relation to family and childhood that you will never eat again; grieving the loss of not being able to share in eating and drinking socially with people you love unless special accommodations are made in advance; grieving the loss of not being able to enjoy meals at restaurants or at other people’s homes when there’s nothing served that hasn’t touched gluten or butter. 10 months into my official diagnosis and i think i’m still grieving the losses, even without realizing it.

but this is the body i live in, and it’s the only one i’m ever going to have. taking care of it might be the most important thing i ever do. even if it takes a lot of time.


Year 2010: Snapshot #2 (kidney stones and stomach pain are not the same)

January 2010.

On the way home from shopping with C on a bright and bitter afternoon a week after Christmas, I felt a very sharp pain rip across the left side of my lower back. It felt like someone had stuck a needle into some internal vein and dragged it for a stretch of 6 inches. I grabbed my back and tried to catch my breath. It was over as soon as it started.

We drove home and I went right to our bed, stretching myself out and wondering what that could have been. My stomach and intestinal pain was now going on 2 and a half solid months. I had lost about 8 pounds, I was hardly eating (or drinking) much of anything except what I made myself during family functions. My doctor had given me pain medication to deal with the chronic ache and burning in my digestive track. I had removed all dairy, coffee, beer/wine, and beans from my diet for close to 7 months and nothing was changing. IBS every day, chronic pain all the time. I was scared I wasn’t going to be able to start the semester in January.

I don’t remember how long I was laying there when the pain in my back hit again. It felt like my insides were being ripped open in sharp stabs. Because I was used to being sick, I thought: maybe this is a whole new level of IBS. Maybe this is horrible gas or I ate something really bad for me…maybe I’m going to get sick. C found me on the bathroom floor, writhing around, sobbing and shaking and rocking my body. I honestly believed it was gas and sent him to the store to get something for me. (This sounds terribly laughable now—as if gas could cause that much pain…) He came back with tablets that are supposed to relieve too much gas in your system. At that point I was on the floor between our bed and my dresser, sobbing and shaking and almost ready to pass out. He called 911.

C was convinced I was having a kidney stone attack. Having had one himself 2 years earlier, he knew what the pain looked like. Only I’m the woman with the world’s lowest pain tolerance (ask anyone who knows me: this is absolute Truth). The ambulance arrived and the two paramedics made their way through our gutted front hall to find me in the bedroom, trying to breath between the sharp stabs of pain. I could hardly answer their questions, the pain was so intense—I couldn’t get anything out in a full sentence. Rather than bring me out on a stretcher, I hobbled between them down the hall and they lifted me onto the stretcher in front of our house. On the way to the hospital, I kept trying to twist onto my side and rock myself while I sobbed, holding my left side, which now hurt significantly more than my stomach did. The straps on the gurney wouldn’t let me move.

C drove behind us the half mile to the hospital.

They set me up in the hallway, in line behind a row of people also waiting to be checked in. All I remember was twisting and sobbing and rocking myself on the gurney. No one paid attention to me—I’m sure you get desensitized to pain when you were in the ER and I was no big emergency.

Check-in was a blur of questions I don’t remember answering. When they finally moved me into my own room, the pain was so intense, I kept telling C I was going to be sick. He kept trying to get the nurse who first checked on me to come back, but he was no where to be found. I finally leaned over the bed and threw up green bile into the salmon colored plastic pan on the bed-side table. I heard someone outside the curtain yell “she’s throwing up, she’s throwing up!” and three nurses were in my room immediately. Note to self: when you want attention in the ER, just start puking.

A very kind nurse finally brought in an IV and told me I needed fluids and pain meds. When he inserted the needle, his eyes got large and he looked up at me and said, “wow, you might be the most dehydrated person I have ever worked on in the ER.” Not knowing what that meant for my body, I decided his comment scared me. Another nurse came in with two vials of morphine, smiled at me and said, “Sweetie, you are going to feel so much better in about 2 minutes, I absolutely promise you.”

There’s the thing about morphine: it’s awesome. It’s beyond awesome. I understand why people get addicted to pain medications—it’s not as if the pain completely went away, but once the morphine hit my system, I suddenly didn’t care about the pain. I watched him empty the drug into my IV and in seconds my mouth filled with a metallic taste and my vein felt icy. And then the world felt slower. And I could breathe normally again.

At some point, my father showed up. I’m pretty certain he had tears in his eyes. C called my parents while I was in the ambulance and my father got right in his car and drove an hour and a half to the hospital. He stayed with me and C for a few hours.

I was in one of the smaller city hospitals, so rather than having an xray, they decided to do an ultrasound to see if I had a kidney stone. I laid in a bed, full of morphine, while a tech rubbed jelly-stuff all over my belly. The process took a full hour. The test wasn’t conclusive: they thought they saw a stone, but told me it was small enough that I could pass it without an operation. I was sent home late that night with a bottle of painkillers.

24 hours later, I was back on the bedroom floor, freaking out in pain. The painkillers weren’t working. I could hardly move or breath the pain was so intense. C called his urologist at Strong, the major university hospital up the road, and told him what had happened. He told C to drive me to the ER at Strong immediately.

At Strong, I was sent directly down for an xray, then put in a bed in the overnight waiting area to wait out the results. This time, my mom drove out and held my hand and tried to look less worried than C did. C’s urologist was now my urologist: he strolled into my curtained-off room and said, “Never go to that other hospital: they don’t know what they are doing.”

Awesome.

He told me that the xray showed that I had not one, not two, but three kidney stones. And they were all too large for me to pass naturally. The other hospital didn’t know this because they had first pumped me full of pain meds and then did a sonogram, which clouded up the results and made it impossible for them to actually see what was going on in my body. I guess morphine does this to you. Had I gone to Strong the previous day, I probably would have already had surgery. Because of the location of the stones, they would not be able to do an extracorporeal shock wave lithotripsy—meaning, they would not be able to blast my body with shock waves, breaking up the stones into little pieces, allowing them to pass. C had this done two years prior: you end up with a giant bruise on your side, but it’s less invasive.

Instead, I would have to have a cystoscopy-ureteroscopy—meaning they were going in through my urethra, up my ureter, into my kidney and capturing the stones with a wire and a wee basket and pulling them out. The process looks like this:

More awesome.

The urologist asked me if I had noticed anything other than the pain in the preceding weeks that might have altered me to the kidney stones. I told him about my chronic stomach pain. He told me the stomach pain/kidney stone connection was unheard of and very unlikely, but he wouldn’t completely rule it out. He also told me that given how dehydrated I was, it’s likely that not eating or drinking for almost 2 months caused the stones to move.

I decided it was my bodys way of saying, “F-you Rach—if you’re not going to feed me, I’ll just make it worse.”

He sent in a resident to explain the surgery. All I could think was: So, this really good looking resident is going to see me totally naked tomorrow. When’s the last time I shaved my legs?

I spent the night in the hospital and slept about 3 hours. The nurse was required to come in and take my vitals every hour. The morphine made me hallucinate: I would close my eyes and see scary devil faces laughing at me. Because of the IVs, I’d have to drag myself to the bathroom to pee, pulling my IVs behind me and trying not to trip over my hospital gown.

My surgery was at 6 a.m. C took my glasses and they rolled me into OR. I could hardly see anything without my contacts or glasses. At some point, a blonde petite woman walked over to my bed and said “Rachel! Remember me? Kelly?!”

Dear. God. Why? Now, in addition to an attractive resident and a handful of other urologist, urologists-in-training, nurses, and techs, did the one OR tech have to be a girl I worked with for 2 years at Starbucks? I felt two ways about this: 1. Comforted that I knew someone who was about to help push a wire into my crotch and relieve my pain. 2. Horrified that someone I knew was about to help push a wire into my crotch and relieve my pain.

They lifted me into a flexible bed and a tech started putting what felt like little suction cups all over my body to monitor my heart, etc. I had a tube in my nose. My heart was pounding. It was my first time every going under. I waited for the anesthesiologist to tell me to count backwards, because that’s what everyone said they do. But he didn’t. I heard voices all around me, and then things went dark.

I woke up sitting in a chair, covered in blankets, feeling like 10 trucks had run over me, a long black string hanging out from between my legs. A ureteral stent. It looks like this:

And yes, one end of it literally hooks into your kidney so that your ureter does not swell shut keeping the tiny stones from passing through you system.

Inside, it looks like this:

I didn’t know it looked like that until the nurse pulled it out of me 2 weeks later. I just knew there was a black string between my legs, that it hurt to walk, hurt to pee, and that my pee was bright blood orange. I decided right then and there that I needed to start eating and drinking again. Immediately.


Year 2010: snapshot #1

I spent most of the holidays of 2009 laying on whatever couch was in sight, a heating pad pressed against my stomach. The pain began right before Thanksgiving, a sort of burning pressure that started in my stomach and ended under my breastbone. At this point, I had been struggling with digestive issues that went beyond a random stomachache for over a year.

2009 was a blur of toilets. Some times I was face first, watching the remnants of whatever my stomach decided to reject that day float and dip in the bowl: bits of half-digested toast, the bright purple skin of blueberries, forest green scallion pieces mixed in with traces of peanut butter Puffins—a bit of dinner from the night before accenting the morning’s breakfast. I would try to inhale through my nose fast enough to catch my breath before my body lurched again, trying not to let my face get too close to the stench in front of me—trying to register the distance through blurry eyes.

I’m not sure if this true for everyone, but I don’t know how to throw up without crying. I’m pretty certain they go hand-in-hand. I can’t remember a single time I threw up in the last 3 years that I wasn’t crying through all of it. Even times when I knew I would feel better after—that the pain would subside if everything was out—I never looked into that bowl through clear eyes. I never realized I was crying until the end, because I never remembered when the crying started. It just always happened.

Throwing up was rare for me, even in 2009. It happened every once in a while, but never enough for me to make any serious connections. Rather, I often thought I just had a stomach bug and because I’m a PhD student and take classes with hundreds of teachers, administrators, and students from all over the Western NY area (each bringing with them the germs and bugs and colds in their own schools) this seemed normal. A majority of my friends (and professors) were sick with colds and bugs every 1-2 months. I didn’t feel like I was any exception to that rule: My stomach hurt a lot. Sometimes it hurt enough that I couldn’t keep it down. (This is denial working.)

What I did notice was how much time I spent having anxiety while sitting on toilets. By spring 2009, it was difficult for me to get through a single day without getting sick. By May, I dreaded my own bathroom in the morning. I would sit there, listening to my insides churn and gurgle, knowing something was happening, but scared to admit to myself that I should expect the worse. I would run through everything I ate in the last 24 hours, searching for reasons. My heart beat would start to quicken until it felt like a hammer against my chest and I would feel the prinking of sweat start to burst all over my body: first in my palms and on my forehead, right below my hairline. Then, over the back of my skull and down my neck. At that point, I would start talking out loud in an urgent whisper “please let it be okay…please let it be okay…everything is okay…everything is okay. Deep breaths…”

I would repeat that out loud until it happened. Sometimes it burned. Most of the time it hurt. It never felt “right.”

And then I’d realize that I was crying. That the rest of my body was covered with tiny pin-pricks of sweat. That I was gripping the toilet seat with both hands. That I had stopped whispering. That the whispering hadn’t made anything stop. That I was alone in my yet-to-be-renovated, 2-toned lilac purple bathroom and the walls felt too close, too hot, too hideously purple.

I realize now that my physical and psychological reaction in these moments had become mini panic attacks in their own right. But back then, I had no other way to understand what was happening except what my doctors told me: stress + burnout = IBS. Do your best and take care of yourself. It happens to a lot of graduate students. Eat healthy and you’ll be fine.

There was a big part of me that wanted to believe this. I had grown up trusting doctors. Hell: if they believed that pooping once a month for the first 11 years of my life was normal, who was I to question it? Maybe I just grew out of it. Maybe if it was biological, like my dad wanted to believe during those 11 years, it would figure itself out over time.

But it didn’t. It never got better. It just got worse. The holidays of 2009 are snapshots of tiny plates of food—whatever I could force down of my mother’s Christmas dinner. My favorite cookie, Russian Teacakes, called me from the kitchen countertop, although with peppermint candy canes, peanut butter buckeyes, cutouts, pistachio lemon drops, homemade donuts, apple & pumpkin pie, and on and on. I’d eat one tiny Russian Teacake and wait. 30 minutes later, I was on the couch, heating pad pressed against my belly, my mother, sister, and sister-in-law bringing me herbal tea and asking me how the pain could be so intense. I didn’t know. I just knew that I was loosing weight, that my insides burned and ached, and that consuming food was starting to scare me. Really scare me.