Whoops, it's been a while--update

I just realized it's been a long time since I posted anything here, so here goes.

The past week or so has had a few ups and downs. There have been days that I've felt crappy about myself and other days where I don't care at all what people say or think. It's kind of like a manic state of self-esteem. I haven't "measured" my arms much at all (except for a couple times today, and then thought to myself, knock it off, you're fine). I haven't been consistent about tracking my food intake or doing any of the weight training, and for that I am disappointed in myself a little bit. I always get so psyched up about stuff like that only to let my enthusiasm deflate into passivity. There ya have it, my second epiphany: whenever I get excited about a wellness routine, I usually forget about it within a week and feel awful about it. I wonder to myself, why can't I just commit to this? I know it's good for me. But old habits die hard I suppose. Maybe I'll start again today. We'll see.

Despite all that though, I have been having more days where I feel okay about myself. I have felt unapologetic for my appearance, and really have believed that there's nothing wrong with it. I know I'm thin, but every body is different (that's what I tell my preschoolers anyway when they point out my size). However, despite all the better feelings, I am still anxious for a GI doctor's appointment that's coming up in ten days. I am a little worried because my weight is either the same or lower than it was a few months ago. And even though I'm feeling good, and my energy is pretty high right now, I am still nervous that the low number on the scale will override any other good news. It usually goes this way:

Doctor: Well everything looks pretty normal. Your blood tests all came back good, your energy is up, but there's still the issue of the weight. What do you think is the problem?

Me: Um, I don't know. Sometimes I have a good appetite and sometimes I don't. It seems like even when I do consistently eat a lot of calories, my weight either doesn't change, or I feel gross for a few days and lose any progress that I've made. It takes me two weeks to gain five pounds and then I can lose it in like a day and half.

Doctor: What do you think we should do about it?

Me: Maybe if I had a set schedule it would help. Maybe if I planned out meals and had regular lunch times, things would improve.

[In reality, I do kind of have a schedule, but only a couple days a week. I am just sick of everything that I'm used to eating, because I've gotten bored with it; now have no idea what to eat because everything seems nauseating to me.]

Maybe this time, I'll explain to him more that I don't think it's so much a problem with my digestive tract and more with a possibly disordered way of thinking about my body and food. I think if I could see a nutritionist or a counselor it might help more than taking some form of medication at this point.

Long story short, I think that I feel bound to this idea of needing to gain weight partially because I have to answer to doctors who have been closely tracking my disease for seventeen years. I always feels like I've failed when I go in for a visit and without any progress to show for it. It's like I can't feel good about my body, because I know a doctor is going to say that where I am now is not good enough according to some bell curve chart that shows what's normal and what's not. That I'm not at a healthy place within myself, despite feeling like I am. It's like being called in to the Principal's office when you know you've done something wrong and you might be punished. In my case punishment may include some further testing, medication, therapy, or surgery. But hopefully it won't be so bad this time.

One of Many Tests: Age: 8/9

Every time I went to Children's Hospital I was scared to death. On more than one occasion my routine check ups gave way to invasive, though necessary testing, often on the same day. Ah, if only stomach and intestines were as easily accessible as say, knees or teeth. Instead they're smack dab in the middle of your body with only two natural ways of getting in. Blech.

I think my earliest memory of "test terror" was when I was first being diagnosed with Crohn's--somewhere between 3rd and 4th grade. I was scheduled to have my GI tract checked out and I was going to be knocked out for it--this is as much as I knew. I didn't know the details of what was to happen, I guess I didn't care too much as long as I was going to be asleep. Being a child, I didn't know what was going on, or what questions to ask. I think my parents felt like this in a way too. I'm sure they were scared about all the mysteries that were going on inside my body especially before diagnosis; they also didn't really know the details of what was to come either. It was new to all of us.

I remember bits and pieces of my first Colonoscopy. I lay nervously on the gurney as they prepped me for an IV. I cringed at the prick of the needle. (Doctors have always had a very tough time finding my veins since I was little. They are small and really don't stick out at all. Sometimes it takes three or four tries just to draw blood from me even as an adult. Still makes me pretty woozy.) Once the IV was in, they gave me medicine to relax. Soon I was wheeled through through many sets of double doors and into the halls where other patients lay in their hospital beds, newly bandaged from surgeries and doped up into a calm stupor. My final stop was a science fiction looking exam room with all kinds of monitors and gadgets rigged up to hospital trees. They gave me a gas mask and asked me to count backwards from ten. They said that people usually don't make it past seven. I worried what would happen if I made it down to two. Soon there would be no numbers left besides negatives, would they start anyway? But soon, as to be expected, the room started to become foggy and the anesthesiologist who was looking down at me from over the side of my hospital bed started to disappear until I was asleep.

Now, I don't know how long they were working on me by this point, but in the middle of the procedure, I woke up. I woke up while under anesthesia. Holy crap. I was confused and in pain and started screaming. I vaguely remember the doctors scrambling around in their shower caps and scrubs and saying something like, "give her some more!" (I found out later that I was one of the youngest, if not the youngest person at that hospital to get a Colonoscopy and that they weren't sure how much anesthesia was required for someone so little.) I fell asleep quickly after that incident but I never forgot it like you're supposed to.

Reflection

This past week has gone pretty well. I've been feeling generally healthy and have tried not to let myself fall into negative thinking (despite one of my preschoolers asking me why my legs are so little a couple times this week). I had a small epiphany (an epiphany that I have every couple months or so, but typically let fall by the wayside) that I am focused far too much on fear and disease. My thinking patterns are so wrought with criticism and hopelessness, no wonder why I never feel 100 percent. I'd like to start looking more holistically at myself and include different types of alternative medicine to my daily life. For example, I recently read a book about Feng Shui and figured it couldn't hurt to apply a lot of that to our apartment--couldn't hurt right? (Side note: did you know that the center of every room represents its inhabitants' health? There was a lot of crumbs and clutter in the center of our rooms, time to do away with that if I'm gonna be gung ho about this.) Also, meditating is one band wagon I jump on from time-to-time, but I always end up forgetting about it or getting too frustrated or distracted while doing it to commit. But I've been doing it this week and have noticed that it has kept me more mindful of my surroundings and goings on inside my body. So anyways, for the past week I decided instead of wallowing, that I would try to be more proactive about my health and general wellness. In addition to the aforementioned activities, I've also been keeping track of everything that I eat, not just to have a better idea of calorie intake, but also to identify "trigger foods" (or foods that initiate symptoms). So far, that's been helpful. I think a lot of the time I believe I'm eating a lot and should be gaining weight--and while this is true on many days there are also days when I don't eat that much for a wide variety of reasons. It also makes me feel good to be more conscious of myself in a positive light--like I'm doing something good for my body. I've also started doing upper body exercising with small weights, and I've already started to notice some changes in myself. BUT, here's the psychological problem I have with this: I wonder if doing the workouts is a kind of step back in progress. While feeling stronger and more energized is definitely part of why I want to eat better and exercise, I worry a little that it is another way that I'm trying to hide my supposed inadequacies. I'm trying to change something about myself (like my small arms and bony shoulders) because looking at them the way they are makes me upset. If I am really working on self-esteem here, shouldn't I first accept in myself what I don't like before I try to change it? I mean, even though I don't see a huge difference, I already feel more confident in myself after just doing the work outs for a week. What I struggle with though is the fact that I'm putting a lot of energy into achieving a look that I consider "normal" instead of accepting that there is no true "normal." There are ideals, but those are impossible for most women to live up to. However, taking these steps is important to my overall health as well. I guess my base question for myself is: am I trying to eat better and exercise for the wrong reasons?

"What's under your shirt?"

I'm not sure if people knew what kind of surgery I had after my G-Tube put in. I remember my teacher making a little announcement to the class explaining that I would be leaving class a little early every day and that someone would need to carry my books for me--my friend Delaine offered to do that :) I didn't mind that so much. But being in middle school definitely had it's own set of hurdles.

It was after gym class and I had changed back into my clothes. I tried to be careful not to let people see my belly in the locker room, but one day shortly after approaching the bleachers, a boy that I didn't even know that well asked if he could see what was under my shirt. I, of course, said "NO!" to which he responded, "C'mon! Just let me see! Does it really look like a beach ball plug??" We battled like this for a while and a small crowd formed around me, but I never showed him. It made me feel like a real side show act. "Come one, come all! Live from the Epping Gymnasium, Brittany the Human Beach Ball!" Yeah. No way was I going to show him that.

Somehow in college I got over all that. I would show people I had just met my tube without any shame or hesitation. I don't know what came over me. College is a weird time. My freshman year, a girl I had known for a few months casually said, "Hey, what's that under your shirt?" Instead of cowering I said, "It's a tube," and promptly showed it to her. She just looked fascinated, not really freaked out. I spun it like it was more badass piercing than a belly button ring because it goes right through me instead of in and out of a small patch of skin. There was one guy that was convinced that I had a belly button ring, and when I kept telling him that I didn't he'd say, "Oh yes you do! I see it!" So of course I had no problem proving him wrong. I think it's hard trying to hide something like that all the time. For one thing, having a secret is exhausting and it's something I was conscious of almost all the time. Also, I think it's tricky to be a girl with a G-Tube in terms of clothing. Either you wear something that looks baggy and unflattering to conceal the bump, or you could wear something that normally would look good, but the bump is center stage. And trying to find a bathing suit that hid it well enough? Very difficult. I was mostly in tankinis if I went swimming at all. Dressing was a Catch-22 for a long time.

Somewhere after graduation I regained the shameful feelings I was so used to growing up. Maybe it was because I was out of that comfortable environment where I felt strong and confident. You know, a big fish small pond kind of thing. Back in the real world where the bubble is burst is a whole different place. A place without free counseling, body image workshops, and assertiveness training to get you through all the crap that people dump on you.

A Crack in Self-Esteem: July 21-Present

There are days when I feel physically and emotionally healthy, but sometimes my mind can't help but get the better of me. Since writing these blog posts, I feel like I can air out some of my racing, self-deprecating thoughts and then forget about them once I've clicked the "Publish" button. Blogging, so far, has been an effective way to be honest about myself without feeling the need to make excuses for my appearance or shamefully slink into the background. But then there are days when my old patterns take over. Hopefully this post will help to absolve my week of obsessive negative thinking.

Exactly a week ago today I had a doctor's appointment. I was a little nervous, but I had generally calmed my mind down enough so that my heart wasn't pounding like crazy in the waiting room. When they weighed me, the scale read "95"--with my clothes on. I couldn't believe what I was seeing. I thought I at least weighed 100--that's what I tell people anyway--so to see that number was gut-wrenching. I haven't been able to shake the thought of it since. I knew I lost a little bit of weight after a recent Crohn's episode, but not that much. (I don't own a scale for obvious reasons.) When I look in the mirror now all I see is a hardness to my body; bony with a lot of gaps where flesh should be filling me out. I didn't notice that as much before my weigh in. I've been measuring my forearms like a nut job to see if I've gotten any smaller. I don't whip out measuring tape or anything; I loop my thumb and middle finger around the widest part of my forearm and if my fingers can touch, I know I'm in trouble. If there's a space where my fingers don't touch, I'm slightly reassured that I haven't lost too much. Generally speaking, the bigger the space the better I feel. I often try to keep my upper arms flat against my sides to maximize whatever fat is there, because I feel like that will make my arms appear more normal and less scrawny.

Last weekend I caught a glimpse of my legs in a pair of shorts in a store mirror and was instantly embarrassed that I had been walking around like that all day. It makes me wish it was fall so I can't start layering on clothes again. It's strange how seeing a number on the scale can completely change your perception of yourself. I was feeling better about myself, unapologetic for how I looked, but after seeing that number I felt like crawling under a rock or something. I wonder if the way I see my body in the mirror is skewed in the same way anorexic people are said to see themselves, only reversed. When I see my body, I think to myself, Oh my god. You're disappearing. I know I'm not going to totally "vanish" or anything, but to notice that I'm shrinking or that some of the fat or muscle I used to have is gone, is pretty unnerving.

G-Tube: Age 12

After many attempts at using the NG Tube, my parents and I decided that getting a Gastric Tube (or G-Tube) implanted would be my next best shot. I had no idea what it would look like. I assumed that a small hole would be drilled into my stomach and a skin flap would be left to cover the hole when I wasn't using the feeding pump. When I woke up after my surgery, the site was covered with layers of gauze and tape so I had no idea what was going on under there for a day or two. I was kind of afraid to look, but when they took off all the bandages, I was very surprised with what I saw; not because it was bad, but because I had never seen anything like it before. The G-Tube looked like a beach ball plug on the surface. It stuck out about 3/4 of an inch off of my belly and the rest of the tube was under the skin and in though a hole to my stomach. Even though it wasn't the most attractive thing, I was kind of glad it wasn't just a gaping hole in my body that bile could seep out of all the time.

I don't remember much of what happened right before the surgery, I just remember that I was in a lot of discomfort right afterwards. I lay in my crisp hospital bed, propped up on a few pillows to sit up straight. Every time I moved, it felt like an air bubble ripped through my guts. It's kind of hard to describe. It hurt so much just to sit or stand. I never realized that stomach muscles are used to do so many simple things, like turning a door knob or tying shoelaces. When I was on my way home, I tried to relax by laying down in the back seat of my dad's truck, but Massachusetts's highways are not really noted for easy riding. We went over more speed bumps and grooved pavement than I care to remember.

While having a G-Tube did help me put on some weight (or at least stabilize it), it was not without its complications. There were nights when I was especially restless in bed--tossing and turning all the time. Normally this would be okay, but I was attached to a long tube and with every turn it would wrap itself around my body tighter and tighter. Some nights I woke up with the cord wrapped two or three times around my neck. That was always a little scary--like being gently strangled. Sometimes the two tubes would detach from each other and leak sticky, gross smelling formula all over myself and my bedsheets while I slept. It was a very rude awakening, because I would have to figure out what was going on in a drowsy stupor, get up, stop the machine, unplug, take the sheets off the bed, rinse off, get new sheets and start over.

I think the worst was when the tube would unexpectedly come out. The first time it happened, it was because of the above scenario. I was sleeping and the cords became wrapped around me so tight that it pulled the tube right out of my body. It's a very surreal moment to see something that is supposed to be in your body suddenly out of your body, even if it hasn't always been there. The second time it happened was when I was at school. I was sitting at my desk in English class and preparing to switch periods to History. I was gathering up my textbooks on my desk and accidentally let one slip down the front of my torso, and then POP! The downward force of the book caught on the tube and it came right out. At first I was confused. I immediately rushed a hand to stomach to check for the tube, but it was gone. My stomach felt flat, it was foreign not to feel the bump I was used to. Instead I felt the bump at the bottom of my black shirt, almost on my lap. I sat there, slightly panicked, not sure what to do. I think I waited for the bell to ring and then rushed to the bathroom, still holding the tube through my shirt. When I got there, I locked myself in a stall and tried to figure out if I should put it back in myself. After a minute, I decided I had no other choice, because the hole would start to close up after two hours. (That's what the doctors told me last time. Apparently the stomach heals itself pretty quickly.) The tube part of the G-Tube (or the part that goes inside and looks like a short straw) has a small balloon around the bottom that inflates once it's in your belly to keep it from coming out. In this case, the balloon was broken because my stomach acid had eaten away at it over time. Getting the balloon section in was always the hardest part, because it is a little wider than the rest of the tube and the incision it's going into. So I started pushing it in. I pushed and it resisted, over and over. It would go in a little bit and then feel stuck, not budging any further. But I knew I had to get it all the way in before the bell rang again. So I mustered up everything I could and forced it in. My stomach gulped it up. After that, the rest of the tube went in pretty smoothly and I went to class like nothing had happened.

But somehow, even worse than that, was the time it got ripped out by someone's backpack. I still to this day have no idea how this could have physically happened. But I was walking down the hall (switching classes again) and one of my classmates must have turned quickly with her large backpack on and it swatted my stomach. I felt that classic yank sensation that I was by now getting used to and realized that the damn thing was out again. I couldn't figure out where it was. I scrambled looking all over the ground for it to no avail. Then I raised my eyes up and saw it dangling from the girl's netting on her bag. My eyes widened with shock. There she was, walking down the hall casually with my tube hanging off of her, completely unsuspecting. I was so worried that someone would see and ask her what the hell that was. This very bizarre-looking medical accessory she was now donning. I tried to stealthily snatch at it without being seen. I don't think anyone really noticed what I was doing, thank God. After swatting at it, my tube ended up landing on the dirty school linoleum that had been graced by hundreds of less than hygienic sneakers that day. I quickly grasped it from the floor and brought it to the bathroom. All I could really do was rinse it off a little in the sink before putting it in. Not a very sanitary medical procedure, I must say. But I put it back in like I'd done before, though slightly more grossed out this time. At least nobody saw.

Disclaimer: the picture used was found on the internet, but it was the same tube I used.

Body-Image: Age 10

I spent the majority of elementary school skinny. My highest weight was 60lbs by the end of fifth grade. But I didn't think about it or consider my body as unhealthy looking. To be honest, I never even thought about the way I looked at all. Instead, I focused my energy inward on the sick feelings that a combination of Crohn's and anxiety had cultivated. Of course, this had to change at some point and that point was a school field trip to Water Country--our local water park.

I had spent the day floating around in the wave pool with y friends. Everything was ordinary and I was having a good time. I was standing by myself, shivering under the cool grey sky without a towel--goosebumps and purplish skin from head to toe. I think I was wearing a one piece bathing suit, but I don't really remember. The details of the suit have been replaced by the scathing remarks of a girl a couple years older than me. She approached me, unprovoked, and asked coolly, "So, are you like anorexic or bulimic or something?" Stunned, I blurted out a quick "no" and they walked away, unaffected by the interaction. That was good enough for them, but from that moment on I never looked at myself the same way again. I felt so hurt and suddenly naked and I didn't quite understand why. I wanted to hide my now apparent bony legs and arms and yearned for a towel so that nobody else could see my withered body. I had heard the words "anorexia" and "bulimia" before. I knew they were eating disorders, but I never thought of them as any more than just words. I knew that I wasn't either one of these labels (especially not bulimic) so I couldn't figure out why it upset me so much. Now I understand.