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.
Friday, July 29, 2011
Wednesday, July 27, 2011
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.
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.
Saturday, July 23, 2011
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.
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.
Time to change some thought patterns
It's amazing how seemingly meaningless events can impact your future. I was thinking back to my post about when my phobia of vomiting began. I was seven years old, and yet that same fear is still with me at 25. Year after year the fear just never stopped. Nowhere along the way did I have any notion or reason not to feel this way. How crazy is it that an irrational fear from childhood can follow you into your adult years--that you can never outgrow something that started pre-adolescence? People stop worrying about things like getting sucked down the drain in the bathtub because as you grow up, you can rationalize and make sense of events/emotions. I guess for me it was hard to disrupt the pattern of thinking because I'd repeat the thought all day every day, then I developed a digestive disorder and almost had to think about it and be aware of the physical symptoms. What is it they say? It only takes seven days to start a habit? I've had about 6000 days of thinking this way, so it's pretty ingrained. I imagine it's similar to trying to break an addiction. Even though you may know it's harming you, it also feels very familiar and comfortable, and you may have forgotten how to live life any other way. Bottom line: I shouldn't have the same ideas about life as a seven-year-old. Now to figuring out how to unthink these thoughts.
Thursday, July 21, 2011
Rewind back to the very beginning
When everything started in elementary school, I really wasn't too concerned with my peers. I wasn't really worried about if they were laughing at me or if they would say hurtful things. None of that really crossed my mind. What did cross my mind were thoughts of a teacher that would often make a spectacle of me, especially at the lunch table.
Every day at lunch I'd sit with a group of friends, but try to make myself invisible when I saw a certain lunch duty teacher stroll past our table. I'd busy myself with the kind of forced conversation that can only happen when you see someone you really don't want to talk to. During this period of time was when I started having symptoms of Crohn's and general anxiety so my appetite was pretty much non-existent. I'd eat a few crackers, drink some chocolate milk, and poke at the sandwiches my mom had cut into cute little heart shapes for me. But I never really put a dent in anything. And this teacher knew it. [Let's call her Mrs. Q for all intents and purposes--"Q" is not her actual initial.] As soon as I saw Mrs. Q coming I would cower. It seemed like she could smell my fear and anxiety from across the cafeteria and then beeline her way over. She'd come up to me and check my lunchbox. She'd inspect what I ate and hadn't eaten and tell me that I needed to eat more. She'd stand over me and just watch. This may not sound that bad, but it was the scorn in her voice that made it so awful--as well as the fact that everyone at the table could hear what was going on. A few times I had to fast before having tests done at the hospital so my mom would send a note explaining why I wasn't eating. I felt like I was at least given a pass on those days.
The worst part of all this is that it did not stop at the cafeteria. There was one day in paticular when I was in music class and Mrs. Q poked her head in to ask the music teacher a question. I felt my face flush and started talking to my neighbor about nothing. Then she pointed me out. She said something about how I looked a little better, about my eating habits, and some other nonsense about my appearance that really had no business being talked about in front of a class. I felt so red in the face and humiliated for being pointed out like that in front of my peers and by someone I should've been able to trust. Other than doctors, she was probably the person I most dreaded seeing. When I got to middle school, I was a little more at ease for not being around her. But I can't say that when I did see her, even as I got older, I didn't at least cringe a little.
Every day at lunch I'd sit with a group of friends, but try to make myself invisible when I saw a certain lunch duty teacher stroll past our table. I'd busy myself with the kind of forced conversation that can only happen when you see someone you really don't want to talk to. During this period of time was when I started having symptoms of Crohn's and general anxiety so my appetite was pretty much non-existent. I'd eat a few crackers, drink some chocolate milk, and poke at the sandwiches my mom had cut into cute little heart shapes for me. But I never really put a dent in anything. And this teacher knew it. [Let's call her Mrs. Q for all intents and purposes--"Q" is not her actual initial.] As soon as I saw Mrs. Q coming I would cower. It seemed like she could smell my fear and anxiety from across the cafeteria and then beeline her way over. She'd come up to me and check my lunchbox. She'd inspect what I ate and hadn't eaten and tell me that I needed to eat more. She'd stand over me and just watch. This may not sound that bad, but it was the scorn in her voice that made it so awful--as well as the fact that everyone at the table could hear what was going on. A few times I had to fast before having tests done at the hospital so my mom would send a note explaining why I wasn't eating. I felt like I was at least given a pass on those days.
The worst part of all this is that it did not stop at the cafeteria. There was one day in paticular when I was in music class and Mrs. Q poked her head in to ask the music teacher a question. I felt my face flush and started talking to my neighbor about nothing. Then she pointed me out. She said something about how I looked a little better, about my eating habits, and some other nonsense about my appearance that really had no business being talked about in front of a class. I felt so red in the face and humiliated for being pointed out like that in front of my peers and by someone I should've been able to trust. Other than doctors, she was probably the person I most dreaded seeing. When I got to middle school, I was a little more at ease for not being around her. But I can't say that when I did see her, even as I got older, I didn't at least cringe a little.
Wednesday, July 20, 2011
Woa--it's out there now
I just wanted to thank everyone for reading my blog and for all the comments people sent on facebook today. I appreciate people taking the time to read my story. I started having a, "Holy Crap, this personal stuff is actually 'out there' for anyone to look at now" kind of moment and got a little freaked out, but at the same time I'm really happy to be finally getting all of this off of my chest. I feel like this part of my life has been mostly kept a secret--the details of it anyway. I'm sure that anyone who has kept a secret for a long time (in my case, seventeen years) knows that that kind of thing starts to wear on you. My hope in blogging all of this is that I can feel like I'm living a more open life and not like I have to make up excuses for who I am, but to be truthful in all of it. I realized lately that as a defense mechanism to when people ask me "why are you so skinny?" I usually say, "Because I have Crohn's," and that usually shuts them up, or at least opens up the conversation to something not of criticism but of respect and understanding. I always feel kind of weird saying it, but I think that maybe it will teach people to think twice before judging someone before knowing them, no matter what their story.
Part 2 of the NG Tube
After the office visit, my doctor had me stay at the hospital for a few days to get used to having the NG Tube. I lay in the hospital bed with the tube fastened to my cheek with medical tape while Peptamen--high calorie supplement--was slowly pumped in at 50cc per hour. Initially I did okay with the slow drip, but as they upped the pace, I woke up feeling so sick and full that I was very close to throwing up. It was an unpleasant thing to get used to. I remember going to the kid's recreation room at Children's Hospital with the tube still in, me pulling my medical tree behind me everywhere I went. I did some arts and crafts and met a boy named "Bernie". He didn't talk much, but we kept each other company. I named a stuffed bear I got at the hospital after him.
I was so excited to get out of the hospital--at first. I couldn't wait to be back at my home again. It was near Christmas time and we had all the decorations up, so home felt even more cozy than usual. But then the reality hit. I would have to be "hooking up" to this machine every night from now on if I was going to gain any weight and have any easy doctor's appointment. In the beginning, a visiting nurse would come and help me insert the tube every night at around 7:30/8:00. I remember being at school and feeling like the days were just flying by. I had a mental countdown by the middle of the day.
Crap, only 6 hours until the nurse gets here. All I have time for is homework and dinner and
then my night's over.
So the routine stood. My nurse would come. I would dread it. I'd fulfill my unpleasant duty of putting something foreign through my body every night, dread taking it out in the morning, pull it out anyway because I had to, and start the whole cycle over again. There were a few times at school when people asked me why my face was all red and torn looking. I didn't want to tell them that the medical tape that holds my feeding tube in place rips the hell out of my skin because it's not meant to come off easily. That's not a cool thing to say in middle school. I don't think I told much of anyone what was going on with me except for a few close friends,
but over time it seemed like people I didn't even know were getting suspicious of me.
The one stand out story that I remember from the era of the NG Tube happened one Saturday morning. I was having trouble mustering up the courage to pull out my feeding tube--more than usual anyway. I just sat in bed for hours slowly tugging at it little by little. My mom came up and asked me if I wanted anything for breakfast. I told her I'd like a bagel, but that she could hold off a few minutes because I still hadn't gotten the NG out yet. She went downstairs for a bit while I continued to try and then chicken out. After a while, my mom called upstairs that my bagel was ready, but I still hadn't done it. It must have been at least another half an hour before I just decided to do it. And then 1-2-3 I yanked it out, and the tube had an honest to God kink in it. I could feel the kink travel all the way up my throat and out my nose. It did not feel good. Now, this process never feels good, but usually it's not as bad as when you've got a bent hose trying to make its way out of a small nostril. After that day, I told my parents that I just couldn't do it anymore. It was too mentally draining to agonize about doing this every day and then actually have to perform it before bed and first thing in the morning. For a while I tried drinking the supplements that were going into me via feeding tube, but they were pretty gross, and sickeningly filling. After telling my doctor this, he suggested that I either drink 10 or 11 of those things per day or have a G-Tube surgically placed. I opted for the G-Tube which I ended up having for about 10ish years. More on that soon.
I was so excited to get out of the hospital--at first. I couldn't wait to be back at my home again. It was near Christmas time and we had all the decorations up, so home felt even more cozy than usual. But then the reality hit. I would have to be "hooking up" to this machine every night from now on if I was going to gain any weight and have any easy doctor's appointment. In the beginning, a visiting nurse would come and help me insert the tube every night at around 7:30/8:00. I remember being at school and feeling like the days were just flying by. I had a mental countdown by the middle of the day.
Crap, only 6 hours until the nurse gets here. All I have time for is homework and dinner and
then my night's over.
So the routine stood. My nurse would come. I would dread it. I'd fulfill my unpleasant duty of putting something foreign through my body every night, dread taking it out in the morning, pull it out anyway because I had to, and start the whole cycle over again. There were a few times at school when people asked me why my face was all red and torn looking. I didn't want to tell them that the medical tape that holds my feeding tube in place rips the hell out of my skin because it's not meant to come off easily. That's not a cool thing to say in middle school. I don't think I told much of anyone what was going on with me except for a few close friends,
but over time it seemed like people I didn't even know were getting suspicious of me.
The one stand out story that I remember from the era of the NG Tube happened one Saturday morning. I was having trouble mustering up the courage to pull out my feeding tube--more than usual anyway. I just sat in bed for hours slowly tugging at it little by little. My mom came up and asked me if I wanted anything for breakfast. I told her I'd like a bagel, but that she could hold off a few minutes because I still hadn't gotten the NG out yet. She went downstairs for a bit while I continued to try and then chicken out. After a while, my mom called upstairs that my bagel was ready, but I still hadn't done it. It must have been at least another half an hour before I just decided to do it. And then 1-2-3 I yanked it out, and the tube had an honest to God kink in it. I could feel the kink travel all the way up my throat and out my nose. It did not feel good. Now, this process never feels good, but usually it's not as bad as when you've got a bent hose trying to make its way out of a small nostril. After that day, I told my parents that I just couldn't do it anymore. It was too mentally draining to agonize about doing this every day and then actually have to perform it before bed and first thing in the morning. For a while I tried drinking the supplements that were going into me via feeding tube, but they were pretty gross, and sickeningly filling. After telling my doctor this, he suggested that I either drink 10 or 11 of those things per day or have a G-Tube surgically placed. I opted for the G-Tube which I ended up having for about 10ish years. More on that soon.
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