My Diabetes Story
I found out I was diabetic 29 years ago. I was 6 years old.
My first memory relating to diabetes was being THIRSTY. It was torture. I would try so hard to sit through class but it was like a thirsty monster took over my body. I walked into my Aunt’s house after school and I can picture exactly what the kitchen looked like. I also remember what I drank – seltzer with orange juice. I was trying something different that day since I drank so much of everything else. Little did I know the next time I would drink orange juice it would be for a diabetic low blood sugar. I was staying at my Aunts because my little brother was just born so she took care of me and my older brother for a couple weeks to help my mom. My Aunt told my Mom something seemed wrong – between my thirst and my weight loss my mother brought me to the doctor.
The next image I have is in my mother’s Thunderbird driving to the hospital – I remember what I said. I asked her if I was ok and she told me I was ok but I may have diabetes. Of course I asked her what it was. I only remember the part when she said I may have to take medication or I may have to take needles. I clearly remember not having a worry in my head because I was so sure I was going to take the pills, certainly not needles. The thought of needles seemed so horrible it couldn’t possibly be true.
I was a healthy kid whose nickname was giggles. I was a bit shy, loved riding my bike and my little pony. I also loved sweets and I HATED needles. In fact it would take 2 nurses to hold me down when I would get one. So, as you can tell I wasn’t a good T1D candidate to say the least. I got to the hospital and I was diagnosed with Type 1 Diabetes and yes I had to use needles.
Needles were a bumpy start for me. I remember I always used to cry and yell at my mother because I thought she would keep the needle in too long. I didn’t know it was just the sting from the needle coming out – she bought me this spring loaded contraption that would inject the insulin super-fast. I also used something called the Medi-Jector. However, I was a tough kid, not only did I start giving myself my own injections a year later – I was also one of only a few children that were able to go to one of the top diabetic doctors on Long Island. I remember going to meetings, being around other kids with diabetes – the JDRF was my second home. As for the sweets, I was much better than you think a sweet toothed kid would be. I gave them up like I was told and only had them when I had a low blood sugar. In fact I can remember the way it felt when I would eat a cookie – it would take me ½ hour to eat one. Everyone thought it was cute. I was allowed to have one donut every night. I used to wait with my mouth watering at times until I was able to eat it. Those feelings were actually the start of disordered eating but I didn’t know it yet. I didn’t know what a binge was and I didn’t give into my temptations. I honestly didn’t want to at that time. That didn’t come until I was a teen which I will talk about later.
Want to hear something really dramatic? My first low blood sugar – I don’t remember going low I just remember waking up on my bed screaming like I was possessed. My older brother had to run down the block to the neighbor to get juice in the middle of the night. Then they had to shove it down my throat as I kicked and screamed. Speaking of kicking and screaming my poor mother – I would do ANYTHING to not have sugar when I was low including punching her in the face and I am not joking. Every time I think of this the scene from Steel Magnolias pops in my head. It’s amazing how low blood sugars turn you into a crazy person. Then there were the glucagon injections – they used to give me MASSIVE migraines – so bad I can almost feel the pain when I think about it. Whenever I needed to get one I would spend the next day screaming in agony – when I say screaming, I mean screaming – like I was possessed (see a trend forming?) Not only did glucagon cause massive migraines, it also caused me to throw up. So once I got passed constantly ending up in the hospital when I went low (those lights and sirens became an all too normal occurrence) it was uncontrollable vomiting and migraines. Besides all that fun stuff was not being able to walk when I went to low – I used to trip and fall over and over. It was annoying and embarrassing.
Thank god as I got older my body adapted to it. No more falling, now more passing out, migraines, projectile vomiting or punching my mother in the face. Today I just get the usual shakes, sweatiness, blurred vision, nastiness, brain fog and headaches that most of us get.
High blood sugars weren’t as dramatic for me. They made me very nauseous and thirsty. They were mostly just annoying – I remember in camp we had to drink a gallon of water to flush out ketones when we went high. They used to make it into a contest.
I didn’t have any diabetic friends that I hung out with on a regular basis but I did have friends through JDRF, I remember I had “pen pals” and some friends that lived far away that I met through diabetic camp. I got to go one year because Apple and Eve juice sponsored me. I wish I could have gone more but my parents didn’t have the money. That was one of my favorite T1D experiences. I went against my will (like I said I was shy) my parents promised to pick me up after a week – well after that they had to pretty much drag me home! So it wasn’t all bad – I had some good times thanks to T1D! I remember other parents not letting me over the house because they were scarred I would go low. That stuck with me and made me feel very different from other kids – especially when I fainted and chocked at the same time in 4th grade from a low blood sugar. I remember I was so embarrassed. I also would make friends in the hospital. Besides the good and the bad I would say most parent’s had no clue what T1D was and I just kind of did my thing. The same with my family – I don’t think most people really knew what T1D was – they just knew I couldn’t have sugar. This doesn’t bother me at all – when someone tells me they have something till this day I can sympathize but I can’t empathize because I cannot feel what they or feeling.
I want to add something in here. It is the first time I was thankful I did not have something “worse”. When I was little I was in the hospital a lot. I kind of got used to it and would make friends with other kids on the floor. We would do things like sneak around the halls at night to make it fun. One time there was a nice boy who unfortunately couldn’t stop throwing up. Blood. He threw up so much there were no more sheets for the beds. The nurse who became my friend because I would see her all the time – Alice told me he had MS. I remember thinking he was going to die and I was thankful to have T1D. That story never left my heart and even though I wish I didn’t have this –I am happy to be alive.
I switched schools in 5th grade which was probably the worst thing for me because I was very outside my comfort zone. Everyone in my old school knew I had T1D – nobody in the new school knew and I certainly did not want to tell them. I was very impressionable and I was not a leader. I wish I could say I owned my diabetes and was proud of who I was but it was quite the opposite. I hated being different – I wanted to fit in. I used to cringe every single time I had to go to the nurse’s office to test myself. It felt like I was doing the walk of shame every day. This is also when my body issues crept in. I was 5’7 in 8th grade but I couldn’t understand why I wore a size 5 and my friends wore a 0 or a size 1. I was also nerdy, awkward and self-conscious – so I started dieting. This is also the time I started mini-binging – when I would get a low blood sugar I couldn’t control things anymore – I didn’t have that almighty self-control I had when I was little. There was always sugar in the house so I would start eating and couldn’t stop. Between this and dieting I became a full-fledged binger. You can read more about this in my dieting story but for now I will keep it focused on diabetes.
I went on like this throughout my teenage years. Many people didn’t even know I was diabetic. I became less nerdy and people noticed – my new “cool” self started smoking, drinking and other bad things teenaged do. I worked in clubs at night and slept all day – this was all before I was 21. When I was 21 I had my first and only occurrence of ketoacidosis. There’s not much else to say until I was 23 because all I did was binge, treat my body horribly until this time. I even went months without testing my blood sugar (another cringe).
When I was 23 I started to change a bit. This is when I started to develop a passion for organic eating – I started shopping at Trader Joe’s and started attending classes for newly diagnosed T1D’s. I started actually going to the doctor too and I learned about carb counting. At the time I was eating high carb… still had a major eating disorder and it seemed like I never got carb counting right. I guess I just still wasn’t ready at that time. For the next few years I would still try many diets, try to control my blood sugar’s but unfortunately I still had too many demons even though I was trying much harder than before. I changed a lot in my later 20’s. I become more confident and wasn’t as shy as I was when I was younger. As the years progressed my passion for being healthy, traveling and eating well took center stage. I became successful in my career and when I was 31 I met the love of my life. So, this all helped me be more proud of who I was and made a switch go off that made me want to stop abusing myself.
It’s hard to write this without focusing on food – hello Diabetes is all about food. This is where my dieting story and my diabetes story really start to come together in harmony. I had to get passed my disordered eating. I was ready. I read books, when to psychologist’s and started reading A LOT of blogs. I started to realize you can be fit and eat. So first came intuitive eating then eventually I went back to doing what I do best – I started calorie counting and eventually carb counting which led me to low carb living. That my friends is where everything got a little bit better. I now test regularly; I count cals, carbs and have pretty decent A1C’s. I love myself and accept who I am. I have grown from that shy girl to an independent strong woman. I am still learning and I still screw up because life is a journey and diabetes makes everything more challenging. However, when you do something well with diabetes I believe the internal payoff is sweeter (pun intended).
Writing this was hard because I had to re-live the things that make me feel horrible and depressed but I hope to help people with this. This is why I am writing this blog – to show everyone that you can live a healthy life which I do now but also to show that no-one is perfect and everyone has stuff they have been through. So if you are feeling down, different or lonely remember you definitely are not alone. If one day through reading my blog steers someone away from disordered eating, abusing your body or making any of the mistakes I did then I would be fulfilled.
I hope you enjoyed my story – of course this is only part of it because I know the next 30 years will be much more positive and fulfilling. Actually they already are.