We Are Survivors - Chiara: Living in her truth.

March 31, 2012

I was diagnosed with type 1 diabetes two weeks after my 3rd birthday, about a year after my parents divorced. Medical advances were nowhere near where they are today so I was put on a very strict diet and insulin regimen and was told that I would need to follow it for the rest of my life. I wasnít allowed to have anything with over 5g of sugar in it, because carbohydrate counting wasnít even being used yet. I remember I didnít fully understand why other kids could eat candy on Halloween and I couldnít, or cake at birthday parties. I used to take the candy bars from checkout stands in grocery stores and just smell them because I wasnít allowed to eat them.

As medical technology advanced, I was introduced to carbohydrate counting and fast-acting insulin. But, I was still told not to eat sugary things on a regular basis. By the time I was about 10, I had started to build up resentment for ďnormalĒ kids. They could eat whatever they wanted, whenever they wanted, and I couldnít. However, at this point insulin omission never seemed like an option to me. I would continue through middle school unhappy with my disease and little by little, I started to take worse care of myself. At this point though, it was never about the weight, it was about being different.

The problem came when I got to high school. By this point I was on an insulin pump. Nobody wants to be ďdifferentĒ in high school, and being diabetic with an insulin pump made me different. Everyone always asked me what it was, was I wearing a pager, was I contagious, etc. So by the end of 9th grade I switched back to injections. However, doing injections in front of a bunch of my classmates was embarrassing and uncomfortable, so many times I would go without my lunchtime insulin. I started to notice that I was losing a little bit of weight but at the time I didnít really connect the dots that the missing insulin was causing the drop in weight. When 9th grade ended, I was missing a couple doses of insulin a day. That summer, I was sexually abused (this abuse continued for 3 more years), and that was when I began to really hate myself.

I got my first job at 15 years old working at a grocery store the summer after 9th grade, where I met my current boyfriend. When I met him, I immediately put myself on a diet in an attempt to be super skinny so he would like me. Growing up in my house, being skinny basically meant you were beautiful and desirable. Brad was the first thing in a long time that had truly made me feel alive inside, and I was desperate to keep that feeling. However, I was missing half a dayís worth of food and insulin, and losing a lot of weight at that time. When I reached the middle of 10th grade I had an A1C of almost 11, I had lost almost 20lbs., and my endocrinologist dubbed me a ďnoncompliant diabeticĒ and sent me to Cumberland Hospital for Children and Adolescents in Virginia. I was there for 30 days. When I was released, I took great care of myself for almost a year, but I had developed a very serious bingeing problem and put on almost 30lbs. I felt disgusting and ashamed. I tried every diet out there, tried starvation, but nothing seemed to work for me, and little by little I started skipping insulin again. I was so depressed and felt so alone, I still hadnít told anybody about my abuse (which was still going on at the time), and I ate to numb the pain.

When I reached the mid-point of my senior year in high school, a very good friend of mine from school died in a car accident and I just snapped. I hardly did any insulin anymore and by this point, I had noticed that the more I ate and the less insulin I did, the more weight I lost. It seemed like the only good thing in my life at the time, besides my boyfriend. Being thinner made me feel better about myself, and who doesnít want that feeling? People started noticing and complimenting me on my new body so I kept pushing myself further and further. I kept my eating disorder a complete secret but my mom was very suspicious that something was wrong. She was always finding food trash in my room, candy wrappers, regular soda cans, and she saw the amount of food I was eating and was confused as to how I was staying so thin.

One night, while my mom and stepdad were out to dinner, I got drunk with a friend. By the time my mom got home I was so drunk that I could hardly speak or breathe correctly. I ended up throwing up all over the place and crying and crying and in my drunken stupor I explained how I ate whatever I wanted and did literally no insulin until I felt sick. She told me we would get me help and everything would be okay; and so the journey began.

I went to my first eating disorder treatment center when I was 17 years old. My therapist, endocrinologist, and dietician had been unsuccessful in helping me so they recommended that I spend a month at The Renfrew Center for Women in Philadelphia, PA. I was sent there against my will. My mom packed my bags and we left a week after I graduated from high school. I stayed in Renfrew for only 3 weeks before I convinced my mom to take me home against medical advice. I was stable, but I had also gained 20 lbs. The staff there was really unfamiliar with diabulimia and basically treated me as an anorexic and force-fed me daily. I was mortified by my new appearance and I started skipping insulin again the day I left Renfrew. For 3 more months after that I religiously omitted. I lied to all my doctors and therapists and told them I was really working on myself. Meanwhile I kept pushing my body further and further. I was losing so much weight so quickly I felt like the luckiest girl in the world.

One afternoon after class at my college, my mom called me to join her for lunch at a pizzeria close by. When I got there I couldnít even hold a conversation with her because my breathing was so labored and heavy. She grabbed my wrist and told me my heart felt like a rabbitís. I had never officially been diagnosed as being in DKA before so my mom and I werenít really sure what was going on but I knew I felt awful, so we rushed to the hospital where I was admitted with DKA. The nurse told me she had no idea how I was still standing as my heart rate was well into the 200s and my blood gas showed I was extremely acidic. I had 24-hour oxygen, 3 IV lines: saline, insulin and glucose. My potassium dropped dangerously low and I endured a potassium drip which was the most painful IV I have ever experienced. It burned and stung my entire arm so badly that I yelled at my mom and the nurses to get me ice. When the nurse came back with the ice I insisted on pouring it all over my arm, but they wouldnít let me. After the awful potassium drip, my magnesium fell very low, and I was woken up every hour on the hour to take magnesium pills. They made me stay for 2 nights and 3 days before discharging me after making me promise to take my insulin. I had no intention of doing that though. The first thing I did when I got home was jump on the scale to see how much weight I had gained. I was hospitalized with DKA 2 more times that semester.

After my first semester at college ended, I decided I couldnít do a second semester while I was this sick. I was only 18 years old and I couldnít even climb the stairs to my bedroom. I broke down at my next endocrinologist appointment and begged them to find a place for me to go inpatient. My A1C was 15 by this point. After researching a long list of places for treatment my mom found Park Nicollet in Minnesota (before Melrose Institute was finished being built). They had a program specific for diabetics with eating disorders so thatís where I went. At this point Park Nicollet was really just the entire 8th floor of a hospital in Minnesota, so it wasnít a place to stay very long term and I was only there for 2 weeks. However, those 2 weeks changed my life. For 6 months after leaving Park Nicollet I took excellent care of myself, my A1C was down to 7.3, I was exercising, following my meal plan religiously, and was so proud of myself.

After 6 strong months of recovery, right before I turned 19, I relapsed. I donít know why it happened, but I was so disappointed in myself. For the first time in my life, my health really mattered to me. I suffered in silence though. I still had never told anybody except Brad about my sexual abuse, and it was really eating away at me. At this point Brad and I had moved into a condo together and after about 6 months of living together he confronted me about my health. He could see that I was wasting away, I was falling apart, I dropped out of school (again), but I kept denying there was a problem. Panicked, he contacted my family and expressed how concerned he was. He loved me (still does ) and he didnít want to lose me.

I was in the hospital 2 or 3 times with DKA that year, and after the last hospitalization I finally agreed to go back to treatment. I chose Park Nicollet again (now Melrose Institute) because I knew their program was effective and I already knew some of the staff there. I packed my bags and got on a plane 2 weeks later and arrived at Melrose Institute. I stayed for a little over a month this time. It took much longer for my body to bounce back this time though. I was underweight; I had lost so much muscle mass and my recently developed gastroparesis made it unbearable to eat sometimes. When I was discharged this time I had the best intentions to stay well. But the emotional pain I carried became unbearable at times and I relapsed after only 3 months. I flat out refused to go back to treatment. I was done, I didnít care anymore, I was going to die and I was ok with that. I stopped my insulin, I binged on anything and everything until I was sick, and I began to spontaneously cut when things seemed too overwhelming that I couldnít numb it with food and high blood sugars. I stayed sick for 2 more years, before I took a look in the mirror and saw what was happening to my body. My eating disorder was taking everything away from me; my future, my career, my family was frustrated with me, and so was Brad.

I am now 21 years old, and 7 Ĺ months ago I promised myself I was going to change my life. I came clean about my sexual abuse, how unhappy I was with my life, and how sick I really was. I got help from a therapist to help me cope with the abuse and put it behind me (although I donít think Iíll ever really get over it). I started DBT therapy, and I applied to nursing school, which is a career Iíve always wanted but was never well enough to pursue. I wonít say that now Iím the happiest person in the world, but I find that every day is a little bit easier. Iím happier than Iíve been in a long time. I got into nursing school, Iím almost done with my first semester and I have an A average. My A1C, although still high, is on its way down from 18 to 11.3. Iím not going to lie and say I never miss a dose now and I never turn my pump off anymore, but those occurrences are becoming less and less frequent and I can honestly say I do about 90% of my insulin in any given week. Brad and I are still together and are very happy, I have great friends, and a supportive family. Every day is different, and some days I donít want to get out of bed. I still have bad days where I binge and then hate myself for it but Iíve learned to forgive myself and move on. For everyone who thinks recovery will never happen for them, believe me, Iíve been there. I understand what it feels like to be stuck in the bottomless pit; but it is possible. Itís the hardest thing you will ever do by far, but itís so worth it and it feels amazing! Everyone deserves to live, not just exist.

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