September 8, 2008

UPDATE

DiabetesSisters,

It is time for us to come together to support one our own DiabetesSisters!  Suzanne, the author of this captivating Hot Topics Column on Diabulimia, lives in a part of Louisiana that was ravaged by Hurricane Gustav.  As a result, she was out of power for a long period time and is just now getting back on her feet.  She will resume her column on Diabulimia soon....so check back often! 

In the meantime, please post your well wishes for her and her family below....

You may also contact her directly at suzanne@diabetessisters.org.

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August 22, 2008

I went through different phases and had several where I would actually do really well. Through that entire time, I rarely checked my blood sugar. I didn’t even know where my meter was. I would probably go a year or so without ever checking it. I was constantly scared, but being so sick helped to numb the pain and fear. I didn’t have the energy to deal with it and tried not to think about what I was doing to myself. I thought I was a lost cause, anyway.

When I would decided that it was time to change, I would get myself together, find my meter, buy new strips and tried to take a new outlook on life. I would start out encouraged and feel as though I had changed. That would last a few days, maybe a week or two. Then the fluid would start to come back fast, and my clothes wouldn’t fit and no one around me knew why I was gaining so much weight so quickly, or at least that is what I thought. Then we would go out that Friday, or I would plan to see friends for lunch on Saturday and I’d fall apart. I wanted to look “good”, I wanted to feel cute and adorable. I think being so out of it emotionally was also a huge coping mechanism. When I would do ok and try to diet, my first instinct was to binge eat because that was what had always worked for me before. I didn’t know how to lose weight the healthy way. Also, when I would do well, thoughts of complications and the aggravation of having diabetes would return, and I just couldn’t cope with it. Another trigger was always the fact that I didn’t know HOW to be a diabetic. My pump was calibrated wrong, I didn’t know how to count carbs anymore, and I felt lost and incapable of doing well. So, I would always slip back to my comfort zone, which meant zoning out on my life.

I missed so much during those years. I wasn’t happy. I felt sick all the time. My body hurt. I felt emotional turmoil over what I had done, and was doing to my family. They just stopped asking me about it at some point, because I think they just didn’t want to hear the truth, and they realized that only I could change what I was doing. And it was true. I have had many people in my life try to help me, but they couldn’t. I wasn’t ready.

I don’t know exactly what made this last time different; I don’t know what changed in my mind and my heart to make me become completely dedicated. I think it was a combination of many things. One was that I think I was just ready, and had come to learn after so many failed attempts to be well, that I had to just do it. No one could do it for me; it was completely 100% in my control. I had to deal with the weight. Suck it up, not look in mirrors and just let the bad days pass me by. If I really and truly wanted this to work, that was my only option. I had to deal with the pain and the frustration and the fear. I knew that in time, all of that would pass and I would be forever grateful. I was determined to prove to MYSELF how strong I really was.

Another was the fact that I had found someone amazing, who I wanted to spend the rest of my life with and who I wanted to be able to have children with. And he was there to support me, always. Before a few years ago, I never thought of my future. I couldn’t. I didn’t think I had one. I didn’t want to think about my wedding, my babies, who I would become. It hurt too much to think about it because I honestly believed that I wouldn’t be around to see it, or if I was, I would have amputated limbs, be blind and on dialysis. The fear was crippling and I let it debilitate me.

I now realize that those things do not have to be in my future, and even if they are, I can make it. People do it all the time. Another other big stepping stone was putting myself out there and starting my own blog. I refused to lie if I slipped up and decided to be as honest as possible. Through that, I met so many amazing people with diabetes. I started meeting people through diabetessisters and read others stories in their blogs and learned that life as a diabetic was not the end of the world.

A fellow diabetic told me: Diabetes isn’t a death sentence. I’ve come to realize that those words are so true. Diabetes isn’t a death sentence; it isn’t even close. I just had to figure out how to start over and become a “Born Again Diabetic”, so that’s exactly what I did.

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August 18, 2008

My confession was like the beginning of the end; not the end of my struggles but instead what I thought would be the end of my life. I am constantly amazed at how it wasn’t. I don’t know how or even why I survived this, but I did. God’s gentle hand was certainly on my back, guiding me and protecting me. There really is no other explanation other than that. I often wondered when the day would come that would be my last and I constantly tried to prepare for it, to make sure that my family knew that I loved them before I died. But let me back track just a little.

After Mom knew what was going on, I had to tell my doctor. I don’t remember when I started going to the hospital for DKA, but I remember it starting after my secret was out. Now that Mom knew, I didn’t have to hide it, and I didn’t. I blatantly skipped my insulin and stopped checking my blood sugar. I binged on everything. I ate so much food I would be uncomfortable for hours and hours. I would sneak downstairs at night and find the foods with the highest sugar content and just binge until I couldn’t take it anymore. I’d eat plain sugar, jelly out of the jar, and I even created my own sick variation of cinnamon toast: a piece of toast folded around as much sugar as I could fit inside. I went through several different periods of losing and gaining weight. I ate so much food that if I had any periods of doing ok with my blood sugar, the weight piled on fast. My highest weight was about 70 pounds more than my lowest, and at 5 feet 2 inches, that is a pretty big difference to fluctuate back and forth from within short periods of time.

I know that “eating disorders” are not very well understood by many people. Heck, I don’t understand it either, but most true eating disorders are not about being thin. In fact, they have little to do with weight at all. Eating disorders are about control. This makes sense when I think about why so many people with diabetes are inflicted. I had no control over food. One of the most basic necessities for survival and I had no control over any part of it. The exact minute I ate, the amount of food I ate, the number of times I ate, and the types of food I was allowed to eat was all dictated for me. I had absolutely no say. None. And each time I had even a tad of flexibility in this strict diabetes ritual, I was threatened with complications that seemed worse than death. That being said, I don’t think it is all that simple, either. But I’ll save my whys and how it happens for another day.

Now that the doctor and my Mom knew what was going on, I was monitored very very closely. This meant that I was given even less control than before. I felt trapped. I felt panicked. I didn’t have to hide my secret anymore, and so I fought even harder to be thin. The more tightly I was monitored, the more fiercely I fought against it. I went in and out of the hospital for DKA at least 20 times from the time I confessed during my sophomore or junior year to the time I reached my second year of college. There were days I could barely move. I had to sit down during my showers because I was too weak to stand for 5 minutes. I was constantly throwing up due to DKA. I couldn’t eat because I was nauseous all the time. I slept as long as I could. My parents would plead with me to take my insulin and I would blatantly refuse. I couldn’t do it. I just couldn’t. I can remember fighting with them to not take me to the hospital again, but I was too weak to speak, let alone put up a fight. I’d black out when I tried to stand and would cower under blankets because I would get chills that would make my teeth chatter without any reason. My heart would pound so hard and so fast that I swore it was going to just explode, but the harder it pounded, the more I liked it. If my heart was working hard, it must mean that I was getting thinner.

As bad as it sounds, it became normal for me. That was my life. I didn’t know any other existence and didn’t mind all of the suffering. I spent years torturing my body, without stop. To me, it was worth it. I don’t know how I made it through high school and into college and like I said, I can’t imagine how I survived, but it was likely because my parents never gave up.

I lived at home for most of undergrad and my mom made an arrangement with a doctor who was a family friend. I had to go in three days a week to get my urine checked for ketones. I don’t think they were ever clear, but if I had high ketones, I was sent to the hospital to be admitted. I didn’t really care. They would poke and prod me to find a vein for my I.V. because I was so completely dehydrated. From the first time I was admitted during my junior year in high school to the last, the moment I was released was the moment I began my fight to lose all of that fluid that they poured into my body; I remember going to the snack machine on the way out for a bag of candy. It didn’t change anything.

Like I said, this part of my life is a blur. It is very hard for me to go back there to even attempt to describe it, let alone understand it. I don’t recognize myself when I go there; I have no idea who that person was and I have no idea where she came from. I don’t feel like those are MY memories. It is almost as if I read it all in a book, saw it all in a movie, or I am recalling it from an awful dream. I can feel her sadness when I think about her, but I am so far removed, I cannot relate to her struggles. It’s bizarre to not really know yourself, but in many ways I am so glad I no longer remember the pain that I was in.

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My path to destruction began very simply. At the time I was going through this, there was no name for it and no one had heard about it before, so I somehow just figured each part out as I went. To be honest, the rest of the story is a blur. I don’t remember how old I was when certain things happened or when each turn for the worst was taken. I know things that happened and what I did, but I can’t remember the order or how exactly it all fell into place. So the rest, with little exception, is my best recollection.

I started by trying to get my blood sugar up over night. I would sneak foods reserved for lows: life savers, juice, glucose tabs. I’d also take candy that my sister would buy. She used to buy the huge Sam’s size packages of Bubblicious Bubble gum, cotton candy flavor to be exact, while I got the generic sugar free mint flavored gum. I would steal packs of her gum and just chew the sugar out. I’d chew an entire pack at a time. I also somehow figured out that my mom hid little special treats for herself, and so I would hunt those down and eat them. I’d hide all the wrappers, so as not to be found out. Then early in the morning I would take some insulin. Of course, this had little effect except to make me feel tired and cranky due to the ups and downs of my blood sugar.

When the doctor who diagnosed me suspected that I was “cheating” and eating things I shouldn’t be, I lied. My mom took my side and we stopped seeing her and found someone new. When my blood sugars were completely out of control, the doctors just diagnosed me as “brittle” and moved on. I went through numerous endocrinologists through elementary and high school. I guess Mom was trying to find one who could help me stay under control; someone who could save her baby from the horrible complications that had been engraved in her mind. She didn’t know it was me doing all the harm.

Once my drive to be thinner became more intense I moved on from just eating sugar. The binge eating overnight and my uncontrolled blood sugars had started to make me moody and gain weight. I started skipping insulin doses completely and allowed my blood sugar to sky rocket during the day. I’d make up blood sugars to compensate for it. Of course my meters all had memories, so when Mom would check them, I’d say I didn’t know why it wasn’t in there. I knew it didn’t fool her; how could it have? I didn’t care. I was on a mission, a very deadly mission. It didn’t take long for Mom to figure it out at that point. She didn’t know what or why I was doing it, but she knew that I was doing something. I can’t imagine what she was thinking or how she felt. She had already lost one child to a disease that had no control and there I was, choosing not to control a disease that with a little time and effort could lead me to normal and healthy life.

I was a sophomore or junior when I finally confessed my sins. I had already been fighting my battle for 4 or 5 years. Fighting to figure out a way to be thin, but not get caught. I think I had just become exhausted with my constant manipulation of my insulin, faking blood sugars, and weakening body and spirit. We were going to the beach, so I was working overtime to get my blood sugars where I wanted them. When we got to the camp, we had to move our luggage upstairs and I was too weak. I remember going to the bathroom and passing out. I hit my head on the sink and woke up on the couch. I told my Mom the truth; I told her that I was trying to make my blood sugar high to lose weight.

I imagine at that point everything made sense to her. I had lied and covered things up for so long, while she constantly strived to keep her little girl healthy, not understanding what she was doing wrong. It felt good to have my secret out, but I was embarrassed, I was scared, and I wasn't ready to stop.

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August 1, 2008

Hi all and welcome to my column on DiabetesSisters! First, I want to say that I absolutely love this website, and I attribute a lot of my current success with my diabetes to having it. At your fingertips you have the opportunity to meet the most amazing and inspirational women with diabetes that I have ever come across, all you have to do is jump right in and you will be welcomed with arms wide open! I don’t think I could have come so far without all of their support and kind words.

Let me start by saying that I am no expert on diabulimia. I am far from it. All I have and all I know is my own story. Different people with different experiences and lives react to the exact same thing in completely different, and sometimes opposite ways. The only support I have to help others is what worked for me. That being said, what worked for me was taking control of MY life and everyone out there can certainly do that.Here’s my story: I was diagnosed with Type 1 diabetes when I was 9. This was four years after my older brother passed away from Leukemia, and I was one year older than he was when he left this earthAs many of you know, back then, things were strict!! We were told I could not eat beyond 15 minutes of my designated breakfast, snack, lunch, snack, dinner, and then bedtime snack times. I ate exactly the same amount of carbs, fats, protein, vegetables, fruits and milk for each meal every day. No exceptions. NONE! If I didn’t follow the schedule or the meal plan, then I would get (insert horrible complication here). My sister and I were very active kids and we always ate well, even before my diabetes, so we were always thin. The amount of food I had to start eating was astounding. I constantly got comments on how much and how often I had to eat. As a growing girl, it didn’t really affect my weight, but it certainly drew attention to my plate!I don’t know exactly when it all started and I will never know exactly what triggered it, but I remember starting to feel like I was “fat” not long after my diagnosis. I was probably 10 or 11. I look at pictures from that time and am shocked at how thin I still was, but my mind showed a different girl. As the smart little girl that I was, it didn’t take me long to realize that when I was diagnosed, I lost a lot of weight. I knew how to use that to get what I wanted and so I started sneaking sugary things. It was the slow start to what would eventually lead to a very dangerous addiction that I though would end with my death.But it didn’t, and I am here to tell the story!

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