Diabetes is hard. It's a constant struggle. You have to think about it twenty-four hours per day, seven days straight. Diabetes doesn't take a vacation.
Many people assume insulin is a cure. That, with insulin, you are cured, and you don't have to worry about a thing. I worry constantly. Will I meet someone who cares enough about my well-being to handle me at my very worst? Will he check my blood sugar in the middle of the night, just because? Will I be able to have his children? Will I die in my sleep from a low blood sugar, or have a heart attack, or stroke, caused by a high blood sugar? Will I die young? Will my death certificate state that my cause of death was type 1 diabetes?
Diabulimia came without warning; it started off as an innocent fling, and ended up turning into a tumultuous relationship that I can't seem to break free of.
You see, the demons can never be silenced for good; they can be refused by your own strength and dignity, but it is a hard fight. Being brave and courageous will not always save you from giving into the temptation.
In my last entry, I left you with the cliffhanger of myself as a 24 year old academic secretary for Ohio State.
The comments made directly to me about my weight from my colleagues was more than likely meant to be constructive criticism, but when someone hates their body, and punishes themself because of a chronic illness, it's sometimes best to keep your comments to yourself. Period.
I wrote off my rapid weight loss to my co-workers as a "low carb diet" with "plenty" of exercise. Ha. I knew damn well what I was doing, and I didn't care.
The holidays were upon us at that time, and in order to maintain a "safe weight" prior to the festitivites, I completely disregarded my diabetes. The denial had set in deep, once again. I was determined to prove that I was NORMAL, and that my size 12 butt would fit into the size 8 and 10 pants hanging in my closet.
I would wake up every morning and weigh myself naked. In November of 2010, I was back down to 154 pounds. I was 4 pounds away from being my weight at 15 years old! When I had stopped taking my full daily dosage of insulin back in September, I had weighed 170 pounds. It felt so good to see a smaller number on the scale. It felt amazing to fit into pants that were not my true size. I felt giddy about my dirty secret.
I had dark circles under my eyes, because I wasn't getting any sleep at night. I would get up constantly to use the restroom, and I would chug two 16 oz. bottles of water before going back to bed.
The mornings spent at my apartment, getting ready for work, were unbearable. My muscles were so stiff, it literally pained me to walk 20 feet. I could hardly raise my arms to get a shirt on. I would have to take tiny breaks, inbetween mascara and lipstick, to lay down.
I had a headache that wouldn't go away. I felt dizzy. I was sweating profusely; I had to take extra make up to work to make touch ups.
En route to work, I would pull my car over to the side of 670 West (every single morning) and vomit. It was yellow bile. Sometimes, it would be nothing at all; just dry heaving. I would drive to work in 20 degree weather with my air conditioning on. I didn't wear a coat into work; I was so hot all the time. But my belly was shrinking, so I insisted on keeping it up.
I never ate lunch, or took snack breaks at work. I lived off of water, Diet Coke, and coffee from Starbucks. I probably had one meal per day, that was barely 300 calories.
My pharmacist would call and inform me that my insulin was at the pharmacy, waiting to be picked up (I had signed up for auto renewal, months before). I would lie, and say I had just been busy, but don't worry! I'm coming to get it!
Living two and a half hours south of my home town meant it was easy to lie to my parents about my diabetes; they only saw me maybe twice a month. "Yes, mom. Doing just fine. Yes, I have enough insulin." When I was 15, 16, 17, 18 years old, lying to my mother wasn't a big deal. Being a young 24 year old woman, it hurt me to lie to her, but it was just something I had to do, until I reached my goal weight.
Dr. Christofides is no fool. She knew exactly what I was doing. She called me out on it at every single visit. I would laugh it off, and tell her she was wrong.
Dr. Christofides insisted on taking me to see her patients in the hospital. Women on dialysis. Women who were going blind. Women who kept having miscarriages. All because they neglected themselves.
To me, I was invincible. It didn't matter what the hell I did to my body; That would never be me. It would never happen to me. I wouldn't need to be on a wait list for a donor kidney. I wouldn't have to worry about not being able to have a baby of my own.
At Christmas, we all gathered back home at my mom's sister's house. Everyone complimented me on how great I looked. It felt so good. I could button and zip myself into a size 8, 9, and 10 pant. I would have to be crazy to go back to religiously taking my insulin.
Another year passed. It was 2011. My weight was holding steady at 155 pounds.
I ended up transferring my academic secretary position to another department, only, I would now work as a medical assistant. I instantly fell in love with my new work family. I wore my insulin pump, but I never bolused; I was only receiving my basal, or "background" insulin.
About two months into my job, I received an email from my clinic manager, stating that she and I needed to talk about my attendance.
I was in jeopardy of being fired for my many call off's.
I told my clinic manager that I had FMLA.
She told me that she didn't care—if I am a full time employee, then I am expected to report to work full time. I accepted the write up, and walked out of her office rolling my eyes.
Working in general internal medicine, we see a lot of chronic health problems, especially diabetes. I felt like a hypocrite. I was standing beside my physician, preaching about a healthy lifestyle to his diabetic patients, and meanwhile, I wasn't even taking care of myself.
Now, put yourself in my shoes. I am supposed to be the "shining star," the "good example," of what a diabetic should "look like" to my patients—and I don't even take my medication. I was disgusted with myself. So, I stopped being a diabulimic for awhile.
I ended up bringing down a hemoglobin a1c of 9-something percent, to about 7%. I can also tell you, that my weight shot back up to 170 pounds in eight short months. I hated myself.
After discussing my issues at my appointment with Dr. Christofides, she recommended seeing a psychologist, or entering a rehab program.
I looked into different outpatient clinics throughout the Columbus area, and found one close to my apartment.
When I called to schedule an appointment, the woman I spoke to seemed alarmed and rather concerned. She suggested an inpatient rehabilitation program. The thought of being hospitalized for 4 to 7 days (or more) terrified me. How much money would that cost me? I ended up hanging up on her. She never called back, and I never bothered with it again.
I went in and out of my phases with diabulimia; half of my daily dose here, all of my daily dose there, none of my daily dose the next day.
I was desperate to be with people who had diabetes; I needed someone to relate to. It wasn't a very personal or enlightening conversation with my friends who didn't have diabetes. Their response was always the same: "That sucks."
In an effort to branch out and meet new friends with diabetes, I applied to be a camp counselor for Camp Korelitz, through The American Diabetes Association. The camp catered to both type 1 and type 2 children, ages 8 to 17.
Camp Korelitz was located in Clarksville, Ohio, just right outside of Cincinnati. The camp ran for 7 days.
I was in charge of six 13 year old girls. Another counselor, named Grace, assisted me in caring for our campers. All of our girls had type 1 diabetes, many already on an insulin pump.
Every night, we would sit around and have what was called a "Cabin Chat" before bedtime. We would talk about how ignorance and assumption can hurt our feelings, and discuss how the teasing from "outsiders" affected our mental health.
These girls were so brave. Many of them encouraged one another to accept ignorance as an opportunity to educate about type 1 diabetes. They didn't harm themselves to cope. They would ask me how I dealt with the teasing, and the burdens of diabetes, when I was their age. I had made a promise to myself, even before attending camp, that I would not poison their minds with diabulimia. I never mentioned it. I didn't want them knowing it existed, or that it was even possible to harm yourself this way.
We would have to wake the girls up at midnight and 3:00 AM to check their blood sugars. It killed me to do that to them; I can totally relate to the parents (as well as my own) of type 1 diabetic children! It's awful! Ripping their hands out from underneath their pillow, just to stab it and make it bleed to check a glucose level. Sometimes, they would be so combative in their sleep, we had to go for toes. The lows were terrible. Having to fully wake them up to ingest a juice box and some Goldfish crackers (some of these kids were veterans; they could drink and eat, all while still sleeping). The high blood sugars were a little more difficult; you had to check with the cabin doctor or nurse to see if it was appropriate to correct with insulin.
I stopped to think about all of the times I had woken up with high blood sugars, due to my hyperglycemia—I had never corrected a single one. It was agony. Why had I done this to myself?
Being with type 1 diabetic children made me angry at myself; I felt like I was cheating them. I wasn't being a good role model. They had such positive attitudes, and I would lay in my bunk at night, selfishly thinking that it never gets better.
But it does.
Support is a wonderful thing. Sometimes, you don't even realize how bad you need it.
After camp, I had made another promise to myself—I wasn't going to shatter my neverending hope of a normal life. I wasn't going to hurt myself anymore, because my kidneys were important to me. I didn't want to end up on dialysis. I was not invincible, like I had once thought.
I returned to work feeling miserable. The lack of sleep I got at camp—playing camp counselor, nurse, sister, and parent—made my blood sugars high, and I had ketones in my urine. I ended up leaving work before the lunch hour to take care of myself, which was totally fine with my clinic manager.
I remember driving home and thinking, "Maybe I should just ride these high blood sugars out, and see if I can drop a couple pounds." By the time I got home, I was dry heaving. Nope. Time to correct with a manual insulin injection, and place my insulin pump on an increased temporary basal rate.
By 4 o'clock that evening, my blood sugars were on the mend, and my ketones had pretty much resolved.
I saw my endocrinologist the very next week for a 6 week follow up. I told Dr. Christofides about my revelation. I expressed gratitude to her for never giving up on me, in lieu of the lying that was associated with my diabulimia.
My best friend got married in September, and I was a bridesmaid in her wedding. Myself, Kristin, (and all of our friends) laughed at my disadvantage with my insulin pump and my Dexcom CGM—I looked so lumpy from my lifesavers' outlines in my dress!
The holidays came, and still, I was tempted with stopping my insulin in order to lose weight.
But I didn't do it.
I enjoyed the holidays as a healthy, 26 year old. I wasn't hiding a secret anymore. I wasn't missing work. I was happy, for once. Of course I would have my moments, where I wanted to stop insulin for a few days, just to feel better in my jeans, but it's not worth it. I can't even really tolerate a blood sugar in the 200 mg/dL range anymore! I end up feeling weak and flu-like, just as I did when I wasn't giving myself insulin.
It took some growing up, self love and acceptance, to realize that diabulimia isn't worth it. I don't want to die, cut my life short, all because of a number on a scale.
I had to accept that I was given this diagnosis as a blessing—to help others, especially children, with type 1 diabetes.
I had to accept that with this disease, comes the realization that I will never be perfect—and the best part is, I don't have to be. Blood sugars will go high and blood sugars will go low, and sometimes, I don't want to try and put them back together again, but I have to. There is no choice. Life is too important to me.
There is a great quote I have come to find, spoken by a Mary Anne Radmacher. She said, “Courage doesn't always roar. Sometimes, courage is the quiet voice at the end of the day, saying, "I will try again tomorrow."” I have found this to be very comforting throughout my journey of self discovery.
I don't believe I will ever be "cured" of diabulimia, just like I have not yet been cured of type 1 diabetes. I still think about stopping my insulin every single day. The thought is always there; it always comes to the surface, once, twice, sometimes three times per day. But, I have a great support system in my family, my friends, my co-workers, and my endocrinologist.
I'll always have a little extra chub on my belly (insulin is a hormone that just happens to aid in the storage of fat, which is why a lot of type 1 diabetics have a difficult time losing weight), but I don't care. I'm alive, and I don't have any complications from my juvenile diabetes.
I have recently been eating a healthier diet, and trying to get more exercise. I have replaced a lot of my favorite carbohydrates with vegetables and nuts. I live off of Quest Nutrition Protein Bars—they are virtually bolus-free! I'm finding myself using less insulin, only, now in a healthy way! Less high blood sugars, less correction insulin used. Less carbohydrates ingested, less insulin needed to cover the food in order to prevent high blood sugars. I think I have it figured out, for once in my life!
I wanted to provide my readers with photos for comparison, but a lot of them were just too difficult to share. I was unrecognizable, and I didn't want to trigger anyone's recovery with diabulimia.
This is a photo from 1990, when I was 4 and a half years old; This photo was actually taken at the hospital, during my stay for my type 1 diabetes diagnosis.
This photo is from after my discharge; I went to the local Southwyck Mall in Toledo, Ohio, to get my ears pierced after my follow up appointment.
Happily accepting a dinner time basal injection at Christmas, circa 1994.
This photograph breaks my heart. This was during the middle of my freshman year of high school, in 2001. I looked so sick. Hiding all of that pain behind a smile.
This is from my 17th birthday, the middle of my sophomore year. It amazes me how small my upper body was.
Some full body-comparison shots. The photo on the left was my junior year homecoming; the photo on the right was at some point during my sophomore year.
And here is a collage photo; just recognize how much the weight in my face changes. It's so crazy to me!
This photo was taken on Christmas, 2008. I am pictured (middle) with my siblings. I must have been "sober" here. My weight looks heavy.
This photo was taken during the summer of 2011. I'm saddened by how unhealthy I look; I am on the far left.
This photo was taken in August of 2012, the day after I returned from Camp Korelitz. This is Kristin; we were at her bridal shower. I'm healthy here!
This picture was taken in September of 2012, for Kristin's bachelorette party. I'm the 3rd from the left. I am healthy here!
In closing, I hope that each of you can take something from me sharing my story of struggle. A personal world of self acceptance and love is a wonderful place to be, and it took me a very long time to get here.
I am a warrior, and I refuse to let someone else's words bring me down and take me back to that awful place.
I'm not going back.
**If you or someone you know is struggling with an eating disorder, please call the National Center For Eating Disorders, at 1-877-829-2142. Get the help you need, and help save a life.