Monday, August 19, 2013

Facing Old Demons, Part 1

Let me start by saying this: Once you overcome an obstacle, it's always in your rear view mirror. 

In 2000, I was starting my freshman year of high school. I couldn't wait. A brand new school (same school system), new teachers, more kids, and of course: boys.

Diabetes was the last thing on my mind; I refused to make it a priority.

Each school year, my mom would talk to all of my teachers and give them the 411 about my type 1 diabetes. I was able to leave low snacks in their desk drawers, and the school nurse was at my beck and call. Sometimes, she would come and find me to see how my day was going. The school dietician also always found me at lunch to make sure I had "everything I needed."

When you're a freshman girl, the only thing on your mind is boys. 

You wonder, "Will the older boys think I'm cute?" "Will I be asked to wear his jersey to the football game?", and—"Will he ask me to the dance?"

This was what I thought about; I didn't care about testing my blood sugar, or taking my insulin. I didn't want to draw any (unwanted) attention to myself. 

So, after experimenting, I found that by not taking my insulin, I was always thirsty. My blood sugars were high; I wasn't hungry for food, just thirsty for water, although all I drank was Diet Coke.

I weighed myself half way into the school year, which was after the new year (2001); I was 15 years old, and weighed 150 pounds.

I continued to play soccer, and march in the marching band, without taking insulin. I didn't feel good. I was tired, and grumpy, and my thirst was never quite quenched.

But something started happening; older boys noticed me. They thought I was pretty. I could fit into my older sister's clothes (who was smaller than I was). 

I dyed my hair blonde, and wore more make up. I loved that my belly was shrinking. "Soccer is helping me lose weight, too," I would selfishly think.

My mom would always question whether or not I was taking care of myself. Of course, I lied to both her and my father.

At the time, I would see my pediatric endocrinologist every 3 months. I can remember taking my OneTouch logbook to study hall, the day before my appointment, and just writing random numbers all throughout. 178 here, 204 there, oh look, 98 here! All of them were lies. 

My endo would review my log book and look down at me, over his silver rimmed glasses. "Are these really your blood sugars?" He would ask. "Yes!" I exclaimed. "Where is your meter? Did the nurse download it?" He asked. "Oh, I was in such a rush this morning, I forgot my meter." 

Dr. Horner then started sending in his child psychologist to evaluate me. She would ask me really uncomfortable questions, like if I was doing illicit drugs, or if I was depressed. To a 15 year old, these are all embarrassing and "None Of Your Business!" type questions. I wasn't doing drugs, I wasn't having sex, I wasn't depressed or suicidal, BUT: I was involved in self hate that made me neglect my type 1 diabetes. 

After the visit, I would have to go to the lab to get my blood drawn.

I would then get a phone call after my appointment, maybe 2 or 3 days later.

My hemoglobin a1c was 12%. Another three months later, it was 14%. I was lying to my diabetic care team, saying that I had "no idea," what was wrong with me, and that there was "no way," that my hemoglobin a1c was that high. 

I think deep down, they knew. But they were waiting for something bad to happen in order for me to accept my part in self harm.

Freshman year ended, and summer soccer started up. I remember my muscles being so sore and stiff; It hurt to run. I was constantly thirsty, and trying to catch my breath while I ran, because my mouth was so dry. 

I didn't get any sleep at night, because I was always getting up to go to the bathroom, or get something to drink. I was constantly dry heaving and vomiting bile. I was always sweaty.

I lost focus on my school work; my grades were slipping. 

I decided to take 1 shot per day, in order to feel a little better. I chose to take my Lantus; I never used my Humalog. I ate one meal per day, which was usually dinner that my parents would make for our family. 

I spent my lunch money on Diet Coke, which was $1 for a 16 ounce bottle. I had 4 per day, throughout the school day.

No one ever asked me about my diabetes. My teachers never did, my coaches never did, and the nurse and dietician stopped coming to find me. I honestly don't think that anyone even knew I had diabetes.

My parents would get home from work after I got home from school, and I would say that I had already taken my dinner doses, so, let's eat! My parents trusted me, and I was such a good liar. I used to laugh about fooling them.

Come winter of my sophomore year, I weighed 120 pounds. I had lost 30 pounds since my freshman year. 

My wake up call came one morning in January 2002. I was sitting in English class, and felt so sick. I was scared I was getting the flu. Mrs. Napholz called us up one-by-one to pick up our newly assigned reading material for the quarter.

After I went to the front of the class to collect my book from her, I felt lightheaded, and my heart was pounding outside of my chest; it felt irregular.

I remember walking back to my desk, and just slumped onto the floor. I woke up to everyone standing around me, and screaming. I ended up being walked to the nurse's office, who didn't even assess me. She just let me lay on her cot, and called my parents. She didn't test my blood sugar, she didn't ask any questions in regard to my diabetes. She asked me what I had for breakfast, and when I told her I hadn't eaten, she wrote it off as "not having energy," for the school day. 

I felt like I had a fever. I felt sick.

My mom was working, but my dad was laid off at this time. 

Dad came into the office and took me home. He asked what my blood sugar was; I lied and told him it was low. 

He made me soup when we got home; I don't remember even eating it, I just remember laying on the couch and thinking to myself, "I've got to stop this, I can't do this anymore." I could barely function!

My 3 month follow up with Dr. Horner was the next week, and I ended up confessing my tryst. He was not happy, but seemed to be understanding. My mother was heartbroken. She cried. 

Dr. Horner suggested putting me on an insulin pump. I refused. I didn't want to make a spectacle of my diabetes; no one even knew I had it! I would just subject myself to teasing and tortuous questioning.

However, after graduating high school, and worried about subjecting my body to diabetic complications, I informed my endocrinologist that I was interested in starting pump therapy.

I had to wear a continuous glucose monitor (or CGM) for seven whole days. The insertion of the needle under my skin was terrifying—it was about an inch and a half long. It stayed in place under my skin with lots of Tegaderm tape. The receiver was attached with wires, and it sort of resembled a Holter Monitor. The receiver had a strap, which I could tie around my waist, or wear around my shoulder, like a handbag. I had to shower with this particular CGM, and was advised to put a ZipLock bag over the receiver when doing so.

A week later, I traveled back to my endocrinologist's office to have the CGM removed, and downloaded. The downloaded graphs were sent to my insurance, a long with a letter of medical necessity.

Not even a week from that time, a gentleman by the name of Juan from Medtronic called. It was during the family dinner hour, which consisted of homemade tacos. 

Juan provided me with the news, that would change my life—my insulin pump was approved 100% through Medical Mutual of Ohio. I wouldn't owe a dime.

I remember clapping, and screaming, and shouting. I remember tears welling up in my eyes. This is it. This is all I needed to get back in the driver's seat. I wasn't going to let it control me anymore—I would be in control.

My pump class was about 3 1/2 hours long; my dad journeyed with me back to Toledo to meet with Kathy, my nurse and diabetes educator. Initially, I had to fill my reservoir with saline to "practice," and make sure I was comfortable with dosing.

Another week flew by, and I was finally able to draw up my reservoir with Novolog insulin.

The first couple of days were a little intimidating (especially with the insertion of the Quick Set), but I caught on soon enough.

My hemoglobin a1c came down from 12% to about 10% in three months. My doctor was pleased. I never weighed myself at home, so when the nurse weighed me prior to my appointment time, I was flipping out. I had GAINED ten pounds! Ten! This was ridiculous!

After my appointment, I made another one for 3 months out. 

I continued to deprive myself, here and there. I would bolus for half of the carbohydrates I would eat. I never used a temporary basal percentage if my blood sugars were running high, or if I was on my menstrual cycle. Nope. 

I noticed that I was starting to lose about half of what I had gained, and I was happy.

Once I turned 21, Dr. Horner's nurse practitioner, Janet, decided that I needed to "move on" from their practice; I was getting "too old" for them, and they couldn't treat me as a type 1 adult.

I was given office information for a Rick Beeham, MD, who was still in the Toledo area.

Dr. Beeham was nice; I think I met with him maybe 4 or 5 times. He was calm, and didn't judge me. He assisted me in changing my basal rates, and offered therapy classes for "diabetics with eating disorders." I scoffed at that—who said I had a problem? 

In July of 2009, I ended up losing my job as a medical assistant. I worked at Olive Garden as a server. I never wore my pump to work; I didn't want to deal with the questions and my co-worker's curiosity, and frankly, I couldn't afford my diabetic supplies or prescriptions without my medical insurance. I never took my insulin, my meter, or my syringes to work. I got in trouble for calling off twice, due to DKA-like symptoms from hyperglycemia. I almost lost my job! Call off's required a doctor's note.

My grandma Tinker had lost her battle with breast cancer while I was working at Olive Garden, which made me lapse into an even bigger neglect with my diabetes.

A boy I had been dating at the time decided to take me out for a fun, bar-hopping weekend in Athens, Ohio, his college alma mater (Ohio University).

On the journey back home (which did not once include testing my blood sugar, or taking insulin), I remember hearing radio ads for Mount Carmel and Ohio State University Hospitals. I kept those names in the back of my mind—I needed to get out of Sandusky, and back into the medical field. I needed insurance, and stable income to survive. I had tried and failed to find other medical assisting jobs; there were no full-time jobs anywhere.

Around 8 o'clock at night on a Sunday when we returned back home, I got online and applied for Mount Carmel East Hospital, as a cardiovascular medical assistant.

My mother woke me up the very next morning at 8 o'clock. A woman named Phyllis was calling about my online application.

Two days later, I interviewed. I found out on a Friday morning that I got the job! This meant I would be packing up my life and moving to Columbus, Ohio! 

I had to move in temporarily with my sister's friend, Nicky. I paid her with what I could afford, for rent. I bought my own groceries, and I lived off of a 3 month old vial of Novolog and a Levemir pen, until I could establish with an endocrinologist in my new city. 

I ate like crap. I drank too much Diet Coke, and I started smoking cigarettes to deal with all of the stress that I was under.

Dr. Archer, one of my assigned cardiologists, told me to establish with an endocrinologist as soon as possible. He was worried about me, as his medical assistant. I didn't look good; I looked sick. And I felt sick. Every day.

I eventually made an appointment with Romy Basin, MD. He was on my list of covered physicians in my new Aetna insurance network. 

I only saw him twice; he was awful. He billed my insurance as a type 2 diabetic. He never made eye contact with me. He never provided me with any advice, and he judged me with my history of insulin abuse. He didn't get to know me as a person, just as an uncontrolled disease.

Dr. Archer then personally recommended Elena Christofides, MD. I made an appointment—and was seen within the next 7 days, which is unheard of in specialty medicine.

Dr. Christofides saved my life. 

She never judged me. She listened to me. She provided me with insulin samples, and even got me in touch with her Medtronic rep, to provide me with sample supplies for my pump. 

Medtronic contacted me the very next day to order supplies, based on the prescription she submitted.

Dr. Christofides helped me recognize that I did have a problem with abuse. 

She has always given it to me straight; she has never "sugar coated" anything. She told me I would die if I continued to abuse my insulin to lose weight. I was shocked by the reality. 

I had decided right then and there (June of 2010) that it wasn't worth it. My life was worth more to me than my weight.

I then received a job offer with the Ohio State University Medical Center. 

I continued to work for two more weeks with Mount Carmel, and then took my full-time position (with insurance benefits) at OSU as an academic secretary for the Rheumatology department on main campus.

This was the worst job ever. The pay increase was hardly worth it. I answered phones all day, I submitted refill requests for medication to the doctors, I had to cancel their clinics and arrange their meetings.. It was terrible. Those eight hour days dragged. 

The rheumatologist that I was assigned to, Dr. Mehta, recognized my insulin pump and knew right away that I was a type 1 diabetic. However, she opened her mouth a little too much. She would constantly judge my meals and snacks, and tell me that I needed to lose weight. That did it. Goodbye, insulin. 

My co-worker, Theresa, at the time, had always opened her mouth at the wrong times, as well. "Those pants are getting a little tight through your midsection," she would remark. See ya next time, insulin! 

I was back at square one, and back to lying to my endocrinologist.

15 comments:

  1. Your story is very similar to mine, but I'm younger than you. I wrote a post about it, but not near as in detail as this, I just couldn't do it. Glad you are doing well now. <3

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  2. Thank you so much for sharing and for detailing the hiding and lying, which I'm sure was painful to confront. Thank you for being honest and brave :)

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  3. Meghann -
    Thank you for being so honest and brave and I wish I could reach through the computer and hug you tight!
    Xoxo

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  4. I so honor you for your courage. My demons are different, but I certainly have them.

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  5. Love your honesty. I have experienced a much lesser version of what you're describing (I was dx'd in 1975 @ 8yo!) I always got terrified of having to live with some horrid complication from not taking my insulin. I am terribly lax about checking my sugars though & the regular bouts of major depression don't help. Even after being diabetic for almost 40 years now, I just don't think it's possible, or at least it never has been for me, to "stay on the wagon" 24/7/365. I fall off, I get back on... over & over & over. It's hard, it's discouraging, but I have too many loved ones I can't let down, so I keep trying. :) Can't wait to read the rest of your story. God bless!!

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  6. I just want to give you a hug, this brought tears to my eyes. I can so identify...
    xx

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  7. Thank you for sharing your story. I really appreciate your willingness to share and your honesty. I admire it! I went through something similar to this not long after I was diagnosed at age 12. I still struggle with it everyday. It's hard. This disease sucks and so do the people that make rude comments without ever thinking through the impact of their words!! You are so brave. So, so brave.

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  8. Many thanks to all of you. It would be hard to be open, if I did not have such amazing open minded friends like you.

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  9. "Once you overcome an obstacle, it's always in your rear view mirror. "

    This is a truth many do not understand. Thank you for opening up and sharing this. My heart hurt so bad reading this. I am so sorry for all you felt and feel.

    Take care and thank you.

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  10. Thanks for sharing, girl! Diabulimia sucks. I'll probably be fighting it for the rest of my life.

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  11. Thanks for sharing your story so bravely, Meghann.

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  13. I have been struggling since being diagnosed at 23 (am 24 now) - got so bad I had a heart attack. It's the worst psychological mixture I have encountered and I have not led an innocent life! I still battle every day with the idea but I get sick straight away with v.highs (UK. 30-31 on avg each day - i know u.s does diff calc). Me and my partner want to have a baby and I am terrified. Hopefully the idea of creating a life will get rid of these silly thoughts.

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  14. I don't know why I thought I was the only one who neglected their diabetes. Especially knowing full well the damage it would cause. I have gone into DKA a couple times. Even while I was taking the shots. I wasn't counting carbs and was drinking heavily for a few years. I am on a pump now, but I also have been diagnosed with Gastroparesis so my numbers still run a high. I find it hard to trust the pump and wish I could just do it right. Can't wait for the next part!

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