Saturday, March 5, 2011

Not all diabetes...

Clearly, from these first few posts, it seems like a lot of my life was consumed by diabetes, and it definitely was. Part of my "recovery" from my eating disorder and also a life consumed by diet, was a focus outside of the diabetic world. These two illnesses somehow got meshed together over the years as I was getting progressively sick.

The reason being is that when someone would ask me if I wanted to go out to eat, I could get away with not going because I didn't know the exact carb count or someone would ask me if I wanted something to eat (anything really) and I could justify not having it by saying that my blood sugars were high and I couldn't eat it now.

You can see how by developing and eating disorder and having diabetes can play into each other. But my life now is full of things that have nothing to do with diabetes and/or ED (which is short for eating disorder). ED is just an easier way to talk about something in the third person. In the hospital, when addressing the disorder, it was just easier to say "ED."

Even though I still have to balance all of this on a daily basis, and EDs don't just go away, the struggle gets easier most days, and my life is now pulled in many different directions. Diabetes is a part of my life in a big way as it plays into healthy choices and the lifestyle that I lead, but it most definitely is NOT my whole life, and I like it that way.

Today? What Now?

The last two years of my life have been a rollercoaster, but today, I feel great. I am back to my old self. Nothing is “perfect” and I am okay with that. I do what I can to manage my, still brittle, diabetes. I am no longer on an infant dose of insulin. I play tennis again, can run five miles if I want without much trouble, but I can also spend the day watching movies in bed if my body feels like it needs a break. I have a great job and I have the most amazing family and core group of friends in the entire world. My mom, dad and brothers have been to hell and back with me, but still stick by my side to this day. My friends that I had in high school are still my best friends to this day, even though I purposely lost touch for a little while. I can enjoy life, take care of myself, and take care and nature my disease without it being at the forefront of my life and that is what makes me most happy.
The diabetes was a gift that took too long to unwrap and come to terms with. It gave me purpose, passion, and tools to overcome the biggest struggles I thought I might not make it out of. Having an eating disorder has showed me that life can be hard, actually it can seem impossible to make it to the next day, but overcoming this horrible disease has changed my life for the better. I have never felt stronger. I am proud of where I am. I don’t want to be a model and my body could never look like a model’s body. That is not where my goals lie anymore because life is too much fun when you are not on a constant diet. Life is too colorful when you aren’t looking at it though a black and white lens. It is a place of opportunity and a place to foster your dreams and ambitions, to never take no for an answer from anyone, if you are passionate about something.
If you are struggling with any sort of diabetes related eating issues, encourage you to get help. It seems like with diabetes, eating issues are confusing and frustrating, and sometimes you just need someone to relate to. Sometimes you need someone to yell at, sometimes you need someone to feel sad with. Make sure you have that in your mom, a therapist, or a friend. Find an outlet that isn’t food or exercise related. In the world that us woman and girls live in today, it is EASY to get sucked into that trap, that diet trap that engulfs your world. Please, let me just tell you, there is a light at the end of the tunnel, there is a life after dieting. There is a life after the fear. 


Growing up, I never thought this could ever happen to me, but it did. It was the perfect mix: A type A personality with not so great/distorted body image, mixed with a disease that takes a lot of effort and research to be on top of, the age at which I got diabetes, along with my own perfectionist tendencies, it was inevitable for me.

I was emitted into an eating disorders hospital the day after Thanksgiving, ironically. I was there until Christmas. It was the worst time in my life, and also the start to a new awakening. I was forced to have big meals, to eat often, and it was an absolute nightmare. I was so tired mentally, physically, and emotionally during this time of intense therapy, it was draining in the best way possible. I felt heard, I felt like people understood me and wanted to help me. I also felt vulnerable and I cried everyday. It was the beginning to the new me. I could relate to people and I started to come out the fog I had been living in. I could stop striving for perfection. Someone told me is was okay to be imperfect and I believed her. 

Taking Over

When I walked off the plane coming home from London and saw my mom and dad waving, I felt a sigh of relief that I was home. But then as I got closer to them, I watched my mom’s face as she had a very worried look on her face and heard to faintly gasp to my dad, “she’s so thin.”
The ride home was pretty quiet as I was just glad to be home, to be in the hands of my parents, I felt safe and I felt scared too. Would they find out?
I moved into my own apartment right on the lake in downtown Chicago that fall. I wanted to be on my own, to feel that same independence I felt when I was in London. This clearly was not a good decision knowing the state that I was in, but I did it anyways. The next couple of months were some of the darkest days of my life. I was depressed, cold, thin, and hungry. I was in my senior year at college, I was pretty isolated from life, and from my friends and family because social outings usually meant some sort of food was involved, and that was just too much work explaining how I couldn’t eat. I would usually blame the diabetes and say my sugars were high, even though they were more perfect than ever. I would come home from class, do my homework, and then get to printing out recipes of food I would never eat or make, print out health resources, look at medical journals of diabetes related illness, or just obsess about the perfect diet.
During the last part of that semester (trimester) I barely was living at my apartment because I was home so much going to see different doctors and just being around my family. To put it lightly, I was not a happy person. I was filled with self-hate, horrible body image, and a general hopelessness and sadness I have never felt before. This was the darkest time in my life, and I will leave out a lot of the dark moments I had, but it was a very hard time for my family and I. I was angry I was treating my family and myself how I was, but I couldn’t do anything to stop it. The disease had taken over my mind and thoughts, and I was powerless against it.

The disease was anorexia. 

Are you O.K.?

London was great, I had a great time, but it was also a very dark time. I was very lonely, even with five roommates. I was up early walking to class everyday instead of taking public transportation. I survived on coffee, eggs, and Luna bars. Sometimes if I was starving, I would have some sort of nuts or nut butter to be able to sleep without my stomach feeling like it was eating itself. Before I went to bed every night I would do exercises because I was too weak to do anything else. I went running when I could and practiced yoga to get more in control of my disease and my life.
During this time, I would immerse myself in London culture, art, and other things as I tried to distract myself from how sick I was actually becoming. I would walk miles to go to a drugstore to find a scale where I would pay two pounds to have my weight taken. Looking down at my hipbones poking out of my jeans on either side, the receipt would print out and say that I was at the lowest weight I had ever been. I would revel in this and be terrified at the same time. This would continue throughout my stay in London. I was having trouble putting together sentences in writing class, and grew weaker, but kept on.  My blood sugars were great, and I rarely had to think about my diabetes, unless I had a high sugar or had to change my infusion set for my pump.
My roommates started to take notice of my eating habits as I would always have something different from what they were having, always bought my own groceries and spent minimal money on food.  Or I would buy the most expensive eggs, or the most expensive peanut butter in a small jar for the sake of quality over quantity.
Some friends and I went to Paris for a weekend, and between the walking and lack of food, this was one of the times where I felt very out of it. I loved every second of it and was invigorated by the city itself, but it was a hard time for me mentally. It was a struggle to keep my cool and I was anxious and on edge a lot of times.
My roommates began to notice, and one day when I got home from writing in a coffee shop, I heard them all talking. They were talking about me and how I wasn’t eating much. My very good friend and roommate said some very hurtful things as I listened behind the door. I immediately opened the door, went in my room, slammed the door and cried. Cried that someone thought I was sick, cried because I had no idea what I was doing, cried because I missed my mom and my family back home, cried because I had a paper due tonight but was too weak to put two thoughts together, cried because I was really hungry after my walk, but I couldn’t eat, cried because I realized I would not let myself eat, cried because I was scared of myself.

Control this!

I moved home after my sophomore year in college in hopes of getting some support from my family, as my diabetes had landed me in the hospital a couple of times as my sugars really started to take a toll. I decided to keep trying to lower my insulin levels by cutting back on carbs, and found that my blood sugars were slowly improving.
Seeing doctors every couple of months kept me very aware of the ups and downs of my weight and I saw the correlation between my blood sugars, my weight, and my carb and food intake. This is when the obsessions with the scale really started to take over. It was then that I got an insulin pump, that promised even better control of my blood sugars.
The pump made me even more aware of my body in the strangest way possible. I know had to pinch the fat on my belly in order to insert the needle. Pinching my belly only made me hyper aware of my stomach and its shape.
The mix of fashion magazines I loved to read, being an athlete whose body looked more athletic than thin, and my obsessions with health magazines, eating healthy, and doctors who educated me about the different thyroid hormones that were always a struggle to keep level which affected my weight, and also my perfectionist tendencies ended up taking over every aspect of my life. When I was feeling down, I would convince myself I needed to be healthier or thinner or better, and this would drive me to do weird things.
With diabetes, you are very aware. You are aware of every single thing you eat (because you have to count it), every time you go for a walk, take a sip of something that isn’t water, every time you decide to go out with your friends to a restaurant.
My junior year I decided to really take my independence to the next level. I wanted to experience life from a different perspective, gain more freedom, and I decided I wanted to take my love for writing and photography to London, England. I signed up to study abroad though a program that sounded amazing through New York University.
The summer before leaving for London, my obsessions had taken over my everyday. My thoughts and actions were consumed with being one-pound lighter everyday on the scale. I would step on the scale in the morning and this would determine my day. If I were lighter, this would be a good day. If I was the same or heavier, it would usually be an exercise filled day, and a day of only eating what I thought I should, which was usually next to nothing. Actually I can remember whole days where I remember exactly what I had eaten in the day because I usually ate the same thing every single day for months at a time. My blood sugars have never been better than during this time. I ate at the same time every day, ate the same thing every day, and exercised at the same time every day. My body was no longer out of my control, it was under perfect control. I was no longer a person that had much free will, I was someone who was controlled by my disease, but this is the only way that worked, I thought.
I went to London terrified, nervous, but confident that I was doing something independent and on my own. Even though I had to bring a separate suitcase of only diabetes supplies, that part of my life felt controlled. I wasn’t scared that I would have to be hospitalized overseas, because I had it perfect. Just find the exact foods you ate here in the states, and you would be fine. Stay in control, I thought to myself. 

Who am I?

I went about my senior year of high school taking my shots in the nurses office before lunch hour, pricking my fingers up to thirty times a day, playing tennis, drinking propel or Gatorade if I went to low, and really starting to get a handle of my disease. I didn’t really pay much attention to what I was eating, but I am pretty health conscious, so naturally, I was a healthy girl. My senior year, I really excelled at tennis and ended up going to the state tournament, and going further than I ever thought I could do. I was physically, mentally, and emotionally at my peak. Diabetes was a part of my life I nurtured and took care of, but it was just a part of my everyday life. I was handling everything really well.
The whole time I was in high school I had one goal: get into DePaul University in downtown Chicago. My wish came true as I got into my dream school, moved out of my house, and lived in the freshman year dorms.
College is the time for independence, experimentation, finding yourself, and really living your life for yourself. It was an amazing time and I made amazing friends, loved classes, and exploring the city of Chicago on a whole new level. I loved every second of it and felt like I was finding myself.  Self-growth and experimentation comes at a price sometimes. I wanted to be independent and didn’t want to think about this disease that was now rearing its ugly head as I went out with friends, went drinking, went out to get milkshakes at 3 am because we were studying late, or going to work out at midnight after class. My blood sugars started to creep up overall and this ended up taking its toll. My weight started to creep up as well as my insulin resistance was being built up.  The freshman fifteen, to me, was not only something that I could gain and loose, it was something that was affecting my health and I wasn’t happy about it for all of those reasons.
From sophomore year to senior year, I became obsessed with food and exercise, and diabetes. I did research. I took up running as a way to control what I thought I could control: my weight. I dieted with friends, drank only cranberry juice for a couple days, ate only salads, tried to stay as healthy as possible in the dorm setting, while still trying to hold onto my blood sugar control. Barley hanging on to my social life, I took on a job nannying for kids in the city. I loved this job, but between late night of work, studying, and exercising, my life was slowly being taken over my thoughts and obsessions. 

Plastic Fruit

The next week was filled with doctors, IV’s, lessons on how to stick an insulin needle in a piece of fruit, and then in my own belly. Instructions on how to poke my own fingers, put blood on the little strip, and to know what the numbers on the screen meant.
All along I felt like my entire well being, my health that I took for granted before, was completely reliant on the nurses and doctors that were around me poking and prodding me with whatever device they had at the time. 
“Is this my new life?” I kept repeating in my head throughout the week. “How am I going to be able to do this? I have the ACT this weekend, and tennis? What am I going to tell my coach? Can I still play tennis?”
The confusing part to me, was the one part of this whole ordeal that I had some control over, what I was going to eat. The plastic fruit I was taught to carb count on seemed juvenile and stupid, and I just didn’t want any part of it. I mean, I felt like a kindergartener, learning how to eat and count. I listened to the nice nurse showing me the size of a fifteen carbohydrate apple, and how many carbs one piece of whole wheat bread had. I wish I would have taken this more lightly than I did. My type A personality went numbers crazy, this overwhelming thought that I would no longer be able to just eat what my body wanted, I would have to calculate, count, and analyze this every time I was hungry, was a thought that kept spinning in my head for the duration of my stay in the hospital. This was the part that would soon get way more complicated than I would ever know.
(As I spent the week sleeping, my mom slept on the hospital chair next to me, awake for every 4 am finger prick, every 8 am shot, and so on. I am not sure she actually ever slept the entire time I was in the hospital. )
When I got home, having a little more energy and having my mind thinking a bit more clearly, I did what anyone would do in my position would do… I googled. I googled everything from “what would happen if my sugars stayed high my whole life” to “how many carbs are in a bowl of soup” What about a bowl of ice cream? Wow, probably won’t be having that again. “How many carbs are in a banana? Really? That sucks. I went down the list of things I liked in my head, slowly eliminating as I went down the list. This was the start of what would years later, weigh heavy on my mind, heart, and body.

The Beginning

When I meet people now, they could never know the struggles that I have had.  If you see me now, I am a happy, healthy, active young woman who genuinely loves life. (as cheesy and cliché as that sounds, it’s true) I couldn’t say that about the past five years about my life.
I was diagnosed with type one diabetes on March 3rd, 2004, I can remember vividly, even though my blood sugars had me swaying in and out of consciousness, walking around in baggy sweatpants, a hoodie, and baseball hat, struggling to remember even the most simple information as the nurse asked me to recite my name, date of birth and symptoms.
“Well, I am exhausted, like, I can’t even get out of bed. I was supposed to go to school today, but when my mom came in my room to wake me up, I just cried because I can’t even lift my head, let alone shower and get ready. None of my clothes fit, I feel sick. I slept this entire weekend after an intense training session I had on Friday night with my tennis coach. I had this skin rash a while ago, and they said that lethargy ,thirst, and hunger might be some side effects of the medication, but I can’t even function.” I said rambling, searching for some sort of answer.
“Let’s test your blood sugars,” the nurse said in a very concerned tone.
“What’s that?” I said, sitting worriedly, as she poked my finger with a needle. The blood dripped onto the test strip.
The meter beeped. “HIGH” it read.
“I can’t even get a reading, lets try this again.” My mom and I looked at each other, not knowing what was about to happen.
“HIGH” the meter showed.
“You probably have diabetes,” the nurse blurted out, and went to go grab a doctor.
I sat, in a panic, and immediately started to cry, feeling as if she just gave me a death sentence, having no idea what was going on. The look on my mom’s face echoed the panic that was in mine.
The doctor came in, told me not to move, and said they were going to call an ambulance to get me to a hospital as soon as physically possible.
“I’d rather go with my mom to the hospital,” I’m fine, I insisted.
I got myself out to my mom’s car, with her help, both of us in a state of shock, panic, and confusion. She called my dad and told him to meet us at the hospital as soon as he could.
From that day on my life would be completely changed, and it took me until now, in the year 2011, to realize it was for the better. My life up until now has been very, very hard. Unknowingly, I was in the struggle of my life, or at least the beginning of it. 

Medical vs. emotional

A couple of days ago, I was asked to share my story on another diabetes blog. I was super flattered, so I decided to write it out. I sat down with my laptop last Saturday after the usual yoga/breakfast/caffeine combo, and about 5 hours and 10 pages later, I had written down "my story." I've been thinking about going "public" (ha, well at least online) with my story in the hopes of helping other people who are going through the same struggles.

Doctors don't tell you diabetes will rock you to your core, test your strength daily, kick your ass, make you feel like a robot, make you feel like a crazy person (mood swings with highs!), mess with your emotions, eating patterns, and interfere with your family and relationships. All they tell you is how to prick your fingers and give yourself shots. Even though I knew how to do all of the medical stuff, I would later find out that how diabetes impacts my everyday life would be the thing that required the most time and attention.

Yeah, the medical stuff was difficult, and still is when an infusion set gets messed up or caught on a door handle as you are hurrying to get out the door (ouch!), or when a roller-coaster sugar day leaves you too exhausted to go out and see your friends, or when you get a crazy low that leaves you hungry and sleepy during a time when sleepy isn't an option. You get my point, the medical stuff can be really annoying, but you deal with it. The emotional stuff, however, can be a little bit harder to deal with.