Change Is Coming!

         In July of 2008, my mom and I attended a twelve day program at the Lifestyle Center of America in Oklahoma.  At LCA, they provided a 30 Day Miracle Diet that promised to radically change my diabetes and make my life liveable again.  My mom and I implemented the program from home a good six weeks before heading to Oklahoma.  Good thing we did, because the program was an extreme deviation from the lifestyle I was living.  For one thing, I had to go vegan.  No meat, no seafood, no dairy.  I was supposed to eliminate caffeine and processed foods. Fiber was promoted as being critically important to the type 1 diabetic's diet. Needless to say, it was a lot of changes, but at this point I was willing to do anything to feel better and get myself back on track. It was enormously important that my mom was there with me every step of the way and made all the changes with me. She too became vegan and cut out her two cup a day coffee routine.  I was living at home at the time and my mom was the one who searched Whole Foods for all the foreign ingredients that would help in the transition to vegan cooking.  She cooked the meals and helped me through the tumultuous days and weeks leading up to Oklahoma. 
            For me the changes in my diet were nothing compared to the withdrawal I was going through in terms of my blood sugars.  I was so used to my blood sugars being extremely high that those highs became my normal. It was a big big deal for me to get my blood sugars into the high two hundred range - a good 150 over where they should have been. Like an addict going through withdrawal, I felt horrible starting this program. I felt "low" at 250 and starving all the time. I had headaches all the time and I honestly felt overwhelmed by the physical and emotional changes I was experiencing. My parents rallied around me and became my support system. Every single night we had a "team meeting" and talked about how I was feeling, what was working, and what I felt was the biggest struggle of the day.  Every morning when I woke up and was getting ready for work, my dad would slide an index card under my bedroom door. Each index card had an inspirational message or funny poem that pushed me to try hard and make it through the day. A big theme was "one day at a time." If I could do it for just one day, I was already one day closer to stringing together a week's worth of good blood sugars. I still have every one of those index cards sitting on my dresser in my bedroom and read them from time to time. I also slowly began telling some of my friends about what was going on in my life and the transformation that I hoped would occur. This was tremendously difficult for me as I had been living a lie for a long time and coming clean about that was very revealing.  As soon as I told a few people though, I felt the same sense of relief I felt when I told my mom in March and realized that I have great friends.
            The one amazing difference that became apparent almost immediately after implementing the LCA lifestyle and having my blood sugars slowly slide into the normal range was that I was sleeping better and more soundly than I had slept in close to two years. High blood sugar impeded my ability to sleep because I was up half the night using the bathroom. I would sleep for an hour, wake up to urinate, fall back into a restless sleep and then wake up again the next hour. Senior year of college I could get away with it because I could sleep in very late most days or take midafternoon naps to make it through the day, but by this point I had been "in the real world" for about ten months, and an erractic sleep schedule made the day SO. VERY. DIFFICULT.  I felt the kind of exhaustion that makes car accidents more likely and crankiness commonplace. Looking back, I have no idea how I functioned on so little sleep.  Sleep is something that I don't compromise now, and it makes me sad that I cared so little for and about myself that I would strip away basic human needs like proper eating and sleeping in order to stay thin and feel "in control."
      Soon it was July and my mom and I were about to head to Oklahoma. I felt so happy, grateful, and for the first time in a long time, hopeful that things were looking up.  I had seen visibly results in the six weeks leading up to our trip and could only imagine how much things could get fine tuned with professional help at a world class facility.  I vividly remember the night before we were leaving.  My mom and I were staying in a hotel attached to the airport since we were departing very early the next morning. I remember going to bed thinking about how different my life became when I got out of control in college and how different it would be when I made some liefstyle changes in Oklahoma. Change was coming, and it felt so good.

Two Years Ago Today...(Part Two)

         After my college graduation, I moved back home with my parents and went back to school at night to gain my teaching certification.  I worked retail during the days and quickly realized how detrimental my high blood sugar tendencies were to having a career.  I knew I would only be working retail until I could find a position in a school, but even while working in a department store I saw how hard it was for me to focus and be alert. I would need to use the bathroom two or three times per hour and I was always desperately thirsty.  I take pride in my work ethic and I never let the way I felt interrupt my work and I never called out for diabetes related reasons. It was extremely difficult for me to balance working during the day with taking classes for three hours at a time at night all while feeling like I was at rock bottom.

           I knew I needed help and I was willing to ask for it - but I could not (would not) yet come clean about how deep I was in.  I began seeing a certified diabetes educator (CDE) who was also a nutritionist. I was hoping to find someone who understood the intracacies of diabetes and who could also help me transition out of the way I was eating to something healthier that would help my diabetes control get back closer to the normal range. I found a wonderful woman named Karin who I met with weekly and sometimes even twice a week. Karin was the first person that I told my story to and the first person who made me believe that maybe things could get better. I continued working with Karin for a long time and made progress with her but still struggled mightily.

         In February of 2008, I was working in a school as a special education aide and was having lunch with a co-worker when she casually mentioned that after work she was bringing dinner over to a neighbor whose wife had just died of diabetes related complications. She was in her forties. I was devastated. I vividly remember sitting in that cafeteria blinking back tears and knowing that I finally had to make a serious change - or lose my life in the process. I went home that very day and told my mom that I needed serious help. I came clean about my years of seriously negligent diabetes care and that felt like I was at rock bottom. A lot of tears later, we went online and did some research and found the  Lifestyle Center of America located in Oklahoma, two hours south of Oklahoma City.  Oklahoma changed my life and showed me how wonderful life can and should be if we take care of ourselves and strive for the greatness we deserve.  In my next post, I will talk about the Lifestyle Center of America in Oklahoma and the wonderful weeks I spent there regaining my health and my life.

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Four Years Ago Today...(Part One)

I was missing my college graduation.  I was in the critical care unit (CCU) of the Lehigh Valley Hospital-Muhlenberg. Four years ago today I was a type 1 diabetic, just like I am today and will be for the rest of my life.  Four years ago I was not taking any insulin, was incredibly depressed, and was slowly killing myself.  Most significantly, I was without any hope that things would ever get better. 

            I have had type 1 diabetic since I was three and a half years old.  People usually comment that it “sucks” that I’ve had it all my life, but it’s all I’ve ever known.  Most of my early memories involve life with diabetes:  my initial hospital stay following diagnosis and hanging out with my imaginary friend Geek, my grandparents babysitting me at a young age and my grandmother being terrified to inject me with my insulin, my mom going on almost all grade school field trips just in case anything should go awry with my diabetes, a family vacation to Washington, D.C. that got derailed by a low blood sugar related hospital trip. 

One would think that most of my diabetes memories would be negative, but I have had many amazing experiences as well.  I attended two diabetes camps (Camp Setebaid in Shickshinney, PA and Camp Crestfield in Slippery Rock, PA) for one week every summer from the ages of eight to thirteen with kids my own age who all had type 1 diabetes too.  I then went on to become a diabetes camp counselor at one of these camps and continued this endeavor through my college years.  At these camps, I realized I was not alone, met lifelong friends, and shared laughter at the “black humor” that comes part and parcel with a chronic disease – those little inside jokes that only someone else with diabetes could possibly understand. Freshman year of college, I was struggling through a brutal Biology lab and realized another girl in my class was also a type 1 diabetic.  We instantly bonded over this connection and became immediate friends.  All throughout college we shared diabetes related experiences. We would have been friends even without diabetes, but I know that the camaraderie that comes with sharing a chronic disease really cemented our friendship. Today she is still the person I text when I’m having “one of those days” with diabetes and need to vent or get some feedback.

            Diabetes has always been part of my life and I always did a fairly good job of managing it and still maintaining the life I wanted to lead.  As I grew up my parents were amazing– I played sports, went to sleepovers, lived at the pool in the summers and generally had a “normal” childhood; they made sure I was not inhibited by my diabetes.  My first year at diabetes camp, I learned how to give my own insulin injections and gained a lot of independence with this responsibility.  Life was good.  High school came and I began to struggle with my diabetes.  Some days I felt like I lived in the nurse’s office, drinking juice boxes when I was low and guzzling water when I was high.  There were stretches of time when I felt awful.  Looking back at school pictures from high school, my skin has a greenish tint and I just did not look healthy.  My blood sugars were wildly inconsistent and I gained a good deal of weight from feeding low blood sugars and taking massive amounts of insulin for high blood sugars.  I vividly remember one of the other diabetics in the school, a boy a year or two older than me, who seemed like he had the easiest time with it, breezing into the nurse’s office a minute or two before lunch to check his blood sugar and go about his day.  It was like one of those diabetes commercials where the meter always reads 108 (would love to see a commercial where it was realistic and the meter read 289 or 43). I felt like my diabetes was out of control and it affected the quality of my life.  I was able to maintain As and enjoy social events throughout high school, but I oftentimes felt lethargic and unhappy with how things were going.

            The transition to college was wonderful for me.  I loved Lafayette and made great friends quickly.  I began using the gym at school and started making healthy choices and lost some of the weight that the highs and lows of my blood sugars created.  I decided that the insulin pump was not for me and went back to using Lantus.  I had success with Lantus and my A1c (three month average of blood sugars) was in healthy range.  Freshman, sophomore, and junior years flew by and I enjoyed the typical college experiences.  At the start of senior year, I was uncomfortable with my weight.  I was also stressed with the thought of “the real world” looming and was unsure about what my plans would be once graduation day came.

             By second semester I had spiraled out of control. I was actively diabulimic.  Diabulimia is the condition in which a type 1 diabetic does not take the insulin that is needed to maintain good blood sugars and essentially sustain life.  I started off by just shaving a few units off here and there and saw that I was losing weight without having to watch what I ate and without having to work out. I gradually shaved more and more insulin off until I was taking the bare minimum needed to make it through the day. I felt horrible.  High blood sugar feels like you’re stuck in a desert without water anywhere in sight. You can’t think clearly, you have zero energy, you’re extremely cranky and you generally just want to be left alone to feel miserable and crave fluids.  You also need to urinate a million times a day. I am exaggerating when I saw a million, but it was upwards of fifty times a day sometimes. A lot of the time.

Despite this horrible feeling dictating my moods and energy levels, I was losing weight and I was getting compliments. I felt like I was in control of something when everything else was out of my control. It’s hard to hear, “keep doing whatever you’re doing because it’s working!” when you know what you’re doing is destroying your body and wreaking havoc on your life.  It’s hard to have clothes that never fit before suddenly fit like a glove and not keep going. It’s hard to have guys who were always “just friends” now wanting to buy you drinks and take you out and not try to shave just a few more units of insulin off the daily total. It became an obsession of seeing how much I could get away with.  Some of my friends knew something was going on, but like anyone who has tried to hide a secret of this magnitude, I snapped at them and told them I was fine whenever they mentioned anything. 

Literally every single night I would lie in bed and promise myself that the next day I would get back on track. I’m not stupid; I knew the things that I was doing to my body and I knew the complications I would be likely to face if I kept this up.  So many nights were spent crying in bed because I wanted so badly to give up this vice, this horrible secret that was dragging me down, but I honestly did not think I would ever be able to do so.  It was a vicious cycle of the sweet relief of saying “I’ll start over tomorrow” and then being sick all night and not sleeping and waking up with a horrifically high blood sugar that made me just want to give up and continue on the path that I felt I was doomed to take. It was a very dark time that culminated in being so sick with DKA (diabetic ketoacidosis or extremely high blood sugar coupled with ketones) that led me to be hospitalized for my college graduation.

            You would think that this hospitalization would have been the breaking point, the straw that broke the proverbial camel’s back, but I did not recover at this point.  I did not come clean to the doctors in the CCU or to my parents. I pretended I had no idea why my blood sugars were so high that they literally could not be read on my meter. I came home from the hospital and managed to do okay for a day before I succumbed to the siren call of high blood sugar. I was so used to feeling “high” that it became normal to me. Looking back now it is absurd to me that frequent urination, mind numbing headaches, ridiculous thirst, and general apathy towards life was my “normal,” but it is sad to say that that is what I could deal with and actual normalcy was unfathomable to me.  I was also absolutely terrified that if I even took a unit or two more of insulin than I was taking I would immediately gain ten pounds. It was a very real fear at the time and enough to keep me shackled to this lifestyle post graduation.

         That is a lot for one post, so I will end here and break this into two or three parts. Rest assured that things got better for me and my life in now incredibly different from the way it was four years ago. Stay tuned for part two!