A brief history of my internal organs - National Eating Disorder Awareness Week

A brief history of my internal organs - National Eating Disorder Awareness Week

This week is National Eating Disorder Awareness Week, a week that I didn’t even know existed until after I was in the club. Unfortunately, membership isn’t that exclusive and is definitely non-discriminatory. The members are great, but being a part of the club sucks, so if you’re not in it, don’t be tempted to join. If you are in, I’m sorry, and I know how it feels.

I’ve wanted to share more of my story as part of NEDAwareness Week for the last couple of years, but I wanted to talk about my recovery, and until recently, I didn’t really feel like I was truly recovering. So now that I’m 100% forever healed and fully removed from the physical and emotional trauma that is disordered eating (HAHA NOT), I thought I’d offer a little status update on what my recovery has been like, and insight as to what recovery has looked like for me. I don’t italicize “me” to remind you that this is my blog and I can do whatever I want (it is and I will), but instead to remind you that whatever I say here might apply to other members of this terrible club, but it very well may not. Also, I’m not a doctor, and this is not medical advice.

If not a single person reads this at all or if a million people read it and don’t like it, I don’t care. This is for me now and me of the future. This is also for my great-great-great-great-grandchildren. Not for any particular reason, but I figure that the likelihood that they’ll have old newspaper clippings from 2019 and faded photos of me to look at is significantly smaller than the likelihood that they’ll pull up a talking hologram of me and every trace of my life that has ever been on the Internet. When they get to this page, they’ll at least know I was thinking ahead. Also, I can’t speak to what recovery from most other physical or mental conditions is like, so I’ll try to avoid any direct comparison (and would prefer that you do the same as you read).

Here is a detailed and highly-informative timeline of my skewed relationship with food:

Mid-2014: I think food sucks but am under the illusion that I don’t actually think food sucks

2015: I think food sucks even more

2016: I still think food sucks but I am once again under the illusion that I don’t actually think food sucks

2017: I think food sucks less

Most of 2018: I think food is fuel but I am under the illusion that I actually treat food as fuel

The rest of 2018: I think food is fuel

2019: I think food is fuel and actually understand how to treat food as fuel 

If you would have asked me in 2016 if I was recovering, I would have told you yes, and actually believed it. In some ways, I might have been. But recovery is a choice that I make every day, and over the past three years, that choice has taken the form of many smaller choices that have helped to shape the 98% positive relationship that I have with food today. I want to elaborate on some of those choices and also some experiences that have shaped them. You know, for my great-great-great-great-grandchildren. Hi Megan! (Of course, I’m assuming that at least one of them will be named after me, and also saying hello to future me. That way I don’t look like an idiot in case the first part doesn’t pan out.)

Let’s get started.

Disordered eating does indeed have an afterlife…in hell

Whether you have or are personally experiencing a distorted relationship with food or exercise, or know someone who is or has, it is excruciatingly important that you know that being unhealthily skinny is NOT the only effect of disordered eating. As a side note, being unhealthily skinny is not even a requirement of disordered eating (neither is being a woman or a young adult, for that matter). There are so, so many physical issues that seem to follow eating disorders—none of which have a whole lot of scientific backing 1) because it is only recently that eating disorders have been more closely studied, and 2) because the post-ED experience is so unique to each person.

The first issue that I noticed personally was that my menstruation cycle stopped. When a female of childbearing age misses her period for three consecutive cycles in a row, it’s called amenorrhea, and it happens to about 70% of females with disordered eating habits. Also, if you feel weird about the fact that I said the word “menstruation” or “period” on the Internet or that I am about to talk about mine, then either buckle up or get out of here.

When your body weight drops below the amount that your metabolism requires to function normally, all kinds of things go out of whack, including your hormones. In my case, that meant that my monthly friend no longer paid a visit, and that I was completely unable to focus on almost anything. Paying attention in class was a challenge, and assignments were extra-hard (thank God for gracious professors). This was also, I think, the first time that I noticed the toll that was being taken on my body.

Like many others, I sat in my gynecologist’s office, lied out of shame when asked if I had lost weight due to an eating disorder, and was given birth control pills. The supplemental hormones typically (but not always) cause your period to artificially return, which was the case for me. Doesn’t solve the problem at all, but is a decent interim solution. I used to dread my time of the month, but when I learned that the choices that I had been making were causing direct harm to other physical biological systems, and not just destroying the mental relationship I had with food, I specifically remember thinking that maybe all of the choices that I had convinced myself were helping my body, were hurting it instead. Maybe bleeding out of an inconvenient location for one week every month wasn’t so bad. (Let’s be real, it still sucks. But I try not to take it for granted anymore. Unless I have my period and need to go in a pool. Which is most days. Not the period part, just the pool.)

The problem (as if there were only one, *eye roll*) with eating disorders is that it sometimes truly does not matter what all of the supportive voices tell you from externally. It is an internal game that you must win yourself. In August of 2017 (I could tell you the exact date and time and place but that seems like overkill), I ate my bodyweight in fudge with zero regrets on the same day that I cried about nuts on a salad I ordered being candied and it makes no sense and nothing that anyone said could make me feel better about it.

I’ve seen photos of my insides (don’t worry, you won’t)

I have always been someone who thinks very intently about the future. Future careers, future relationships, future experiences, future meals, future anything. That’s not to say that I don’t try to live in the present, but I’ve always considered the phrase “Do something today that future you will thank yourself for tomorrow,” to be one of many mantras that I abide by. When I learned that future me of 2016-2018 would have to say thank you to present me of 2014-2016 for possible compromised fertility and thousands of dollars in various medical bills, it was one tiny step in the direction of recovery, and one big punch in the gut.

Literally.

A large chunk of those medical bills went to friendly man with a bald head who is my primary care doctor, and another large chunk went to a friendly man with an oddly voluminous head of hair who is my gastroenterologist. One of the only obvious parts of recovery is eating more food. If you’ve lost a ton of weight, it doesn’t matter what other bodily functions you attempt to fix or compensate for—nothing gets better without more food.

Unfortunately, when your body has endured a restricted diet for a long time, reintroducing larger food portions and better habits can literally feel like a big punch in the gut. The microbiome of your gut isn’t used to variety or even used to being used—this can lead to a smattering of digestive issues, stomach pain, and seemingly random food intolerances. I will spare you all the details of what my insides are doing (as always, feel free to ask if you’re interested), but I will say that Belly Comfort Tea works freaking miracles, and that endoscopies aren’t that bad. If you’re fully knocked out. And you have a husband who thinks it’s funny to take selfies with his drugged wife. And when you finally return to planet Earth, they give you unlimited apple juice.

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What to do when you feel like you are having a heart attack for two years straight

If we rewind back to before the friendly man doctors and after the return of my fake period, we will land right smack in the middle of the time I perpetually felt like I was having a heart attack. In the course of a few days, I went from severe chest pain and shortness of breath on the treadmill, to waiting in the ER of Rochester General Hospital for the first of many doctors who would hook me up to an EKG and then tell me that nothing was wrong, to being misdiagnosed with a malfunctioning mitral valve by a second doctor. This was followed by many months of various heart-related examinations (a 24-hour Holter monitor, multiple echocardiograms, several chest X-rays, etc.), many more doctors, and many days of unexplained chest pain.

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This tidbit seems irrelevant, except that 1) this blog post is far too long already, so there’s no point in trying to cut corners now, and 2) you will recall that at this time I have just had the realization that I am probably harming my body, and now it feels like anything that is wrong is a direct result of the disordered eating. This is the second time that I noticed the toll that was being taken on my body.

To make an unnecessarily long ordeal short—over the course of my lifetime (lol this sounds like it’s going to be short for SURE), I have been seen by over a dozen different doctors for various things—not all related to my heart. This is typical for most people. Then, I spent most of 2016 and 2017 getting passed around between at least seven doctors (plus an even larger number of nurse practitioners, nurses, technicians, and radiologists), exclusively for my heart. I went to the ER for unbearable chest pain over five times. I inadvertently hit two parked cars. Oh wait. That doesn’t seem relevant. Moving on.

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It wasn’t until doctor number six ordered a CT pulmonary embolism (a scan to look for blood clots in my lungs) on February 22, 2017. Although she didn’t find anything and the test was deemed another “negative result,” I feel indebted to the skilled radiologist who wrote “Haller index: 4.4” on my chart. Cardiologist number six didn’t know what that meant, but that radiologist and Google did: Pectus excavatum. What that means: I was born with it, my sternum is dipped way low into my chest, my heart is a little displaced and has to work slightly harder, I don’t slouch on purpose, and I have occasional chest pain for no good reason. My mind was blown that not a single physician that I had seen in my 23 years of life could recognize that I had a massive dip in my chest, or that if they had, they didn’t say anything about it. Answers had arrived. Pictured is the apparently elusive cave in my chest, relaxing on the beach in Hawaii.

Almost three years of feeling like I was personally responsible for the destruction of my own body culminated in a trip to the Mayo Clinic in Phoenix, Arizona. Aside from exceptional doctors, Arizona also boasts excellent s’mores-related desserts, and humans.

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The highlight of the trip (aside from the cool Airbnb and the Grand Canyon) to Phoenix and the end of this whole ordeal was that the last physician I will ever need to see about this, the very tall and brilliant Dr. Jaroszewski of the Mayo Clinic, told me that if I was going to opt out of elective surgery (I did, for now), I should wear a back brace (I need to wear it more often), get physical therapy (I went for four months and loved it but sucked at doing my at-home exercises), and get massages every so often. She’s right about the massages—it helps a lot. I have never followed any medical advice so closely.

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The other highlight, of course, was spending two years feeling like I brought this upon myself and actively making choices to be better to my body, and then realizing that I had nothing to do with it, but getting to keep the recovery progress anyway. It felt like a very happy and timely accident.

The cover photo for this post is from our cool Airbnb. When it was taken, I remember feeling many steps closer to freedom.

My taxidermied racoon

I’m going to assume that most of you dedicated, loyal readers of this blog have not read one of my favorite books of all time, Furiously Happy: A Funny Book about Horrible Things. If you have, then I hope you appreciate the title of this section. If you haven’t, read it right now. I’m so serious. Come back after. A brief synopsis:  a very funny lady writes about the funny ways she has found to deal with her crippling depression and wide array of other diagnosed disorders. At the time I first read it, I felt like it was the most relevant and hilarious book I would ever touch. I happened to be waiting for a doctor’s appointment myself when I started reading it. I thought it was so good, that Matt read it after me. Thanks to me, he too got the experience of reading it in a doctor’s office.

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As I’m sure you can tell from the above sections, I’ve seen a lot of doctors, been in a lot of emergency rooms, and participated in a variety of medical exams, ranging from your garden variety pee in a cup to the more exciting bicycle stress test. At one point nearly every part of my body had been scanned in some way over the course of a year. I’ve met so many physicians that I should be getting paid to spend all my time with them. Oh wait…

For a while, Matt and I would joke that I should just send out a weekly email blast with a list of whatever doctors I’d visited that week and attach all of the completely normal test results and completely negative x-rays. I’m pretty sure that nobody would have found that funny except for me, and nobody would have appreciated it except my mom. The problem with seeing so many doctors for so many different things (in addition to the above-average doses of radiation), is that you start to believe that everything is wrong all the time. I started feeling extraordinarily anxious about everything and I’m pretty sure that if you looked at my browser history, the only website I was ever on was WebMD.

Because anxiety can manifest itself in physical ways, in the summer of 2017, I woke up in the middle of the night with the single worst headache I have ever experienced, and yet again, ended up in the ER, because the pain didn’t go away, and my primary care doctor was concerned about some type of sudden brain bleed that inflicts itself upon young adults. The funny thing about spinal taps (a massively wide and long needle going directly into your back—sounds funny, right?) is that if your body decides that it doesn’t want to close up the tiny hole in your back correctly, you will experience this terribly awkward phenomenon where you have a pounding headache when you are standing up vertically but feel completely fine if you lay down horizontally. This works really well when your job is almost exclusively standing in operating rooms or sitting at a desk, and the best part is that the only way to stop the headaches is to get ANOTHER SPINAL TAP. Please enjoy the following hilarious photos of me from that week going about business as usual in an exclusively horizontal position, aka doing all of my work from the cold, hard, and probably extremely unsanitary floor.

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San Francisco, California: The Present

If this insanely long blog post were a movie, I imagine those words would be typed to the sound of a typewriter in white Courier New font on the bottom of the screen. If I had a resolution for 2018, it was that I wanted to leave all the medical nonsense behind. That didn’t exactly happen, at least the beginning of the year, and I began to feel discouraged. I felt like I was going to be stuck in a perpetually unhealthy body, and like there was no point in changing my relationship with food because it seemed like my body wasn’t going to catch up and work like it should anyway.

This is when I learned that if I was going to believe that food is fuel, I needed to treat it like fuel. Although I had been going to the gym to run and lift weights for a few years at that point, my workouts were unplanned and inefficient and mostly driven by my desire to be healthy without actually understanding what it means to be healthy. But in March through June of last year, I worked with a personal trainer who I had been following for a few years on Instagram: Body By Bree. I picked her because I needed an example to follow, and she seemed to demonstrate a healthy balance of fitness and food—she wasn’t a twig, enjoyed being fit, and had an obviously positive relationship with food. She teaches her clients how to lift weights properly and count macros—essentially to choose what you eat based on a set number of carbs, fats, and proteins that is modifiable and specific, based on your physiological needs and fitness goals. The general idea is you can eat whatever if you want, if it fits your macros. If you’re unfamiliar with how that generally works or you’d like to know more, you can read more about macros here (and you don’t need to pay a personal trainer like I did—if you’re willing to put the effort in, all of the information you need is on the Internet).

At first glance, counting macros sounds like a terrible idea for someone who has a history of obsessing over food in an unhealthy way, and that can definitely be the case. I’ll admit that I was nervous about it too, and I don’t recommend it for everyone. But over months and months of measuring portions and planning my meals, I realized that I experienced at least three positive outcomes:

First, counting macros helped my mostly logical, data-driven brain to see exactly how much I had been undereating for years, and when I was struggling to increase my caloric intake and eat enough, the numbers gave me specific goals to meet. It shouldn’t have come as a surprise to me that when I started to eat enough to fuel my body, I slept better, got sick less often, was able to work harder in the gym, and had significantly more focus at work. Strengthening my chest and back muscles has also massively decreased the average amount of pain that I feel from the pectus excavatum. Every day that I felt good and met my goals felt one step closer to balance.

Second, it gave my goal-oriented personality things to strive for—like new personal records at the gym, or multiple days or weeks in a row without coffee—that were not based on my appearance or worth as a person, but instead on my ability to fuel my body well. Lastly, it provided a clear-cut and sustainable way to live an actually healthy lifestyle. When I stopped running on the treadmill every day and learned to lift weights properly, I began to experience a new kind of physical strength that unathletic high school me wishes I could have felt a lot earlier.

This past year has been transformative. The gym is no longer a place I have to go because I need to burn calories and food is not a list of “can eat” and “can’t eat.” The gym is a place I love to go because it makes me feel empowered and strong and food is something I love to enjoy because it is an opportunity to thank my body and choose what I want and don’t want to eat based on what makes my body feel good. I still count macros most of the time, and I work my ass off in the gym. Both have become second nature and both give me the power to treat my body well. I am currently training with a coach who pushes me and makes sure I am rested and fueled. I’ll be dead and gone by the time my great-great-great-great-grandchildren read this but it’s not too late for me to use these experiences to achieve new goals (both inside and outside the gym…or pool) and to make actually healthy choices for my family and future (presently non-existent, to be clear, Erica) children.

I also want to clarify that me sharing this in no way indicates that I am “recovered” or that my work is done or that all of my problems are gone. I still have gut issues, I still think negatively about food on occasion, and I still fall into the trap of making “healthy” choices for the wrong reasons. Things aren’t perfect, but I feel good. Recovery feels good.

Well, if you made it this far, congratulations. I hope you found it funny and informative, or at the very least, engaging enough to help you further procrastinate doing whatever it is you were supposed to be doing these last ten minutes. You now know probably more than you ever wished to about my internal organs. You’re welcome.

 

I want to end by acknowledging a few things:

  1. My sisters and brothers who are still fighting. You are strong, and you can do it.

  2. My faith and personal relationship with Jesus are of course imperative to this journey, but I wanted to specifically focus on the physical health aspects of my recovery story.

  3. All of the people who have carried (and continue to carry) me along the way. I wouldn’t be here without you.

  4. Coffee. I will need you today since I was on a roll and stayed up way too late writing this. My work would not get done without you.

  5. Angie Kochan. She’s my friend and she’s great. She’s also donating to NEDA this week, and you can too!

For rent: brain space

For rent: brain space