Community Voices for Health

By: Rachel Ventura

In this world filled with technology, I feel truly blessed. I currently have two pieces of technology attached to my body that are helping me survive. Here, let me explain…

In the beginning of summer 1992, I was 10 years old and finishing up the 5^th grade. Big things were on the horizon: middle school. It was such a scary and exciting time! The joining of four elementary schools, new people, lockers, changing classrooms. I loved the thought of growing up a bit and having more independence. I couldn’t wait!

As the summer grew closer, I started feeling sick. I remember just not feeling right. My teacher must have thought I was crazy because I was going to the water bubbler and the bathroom more often than anyone else. I just couldn’t quench my thirst and I always had to pee! I would go home from school and just lay on the couch. I didn’t feel like playing outside or seeing my friends, which was very unlike me.

I’ll never forget the night I was so thirsty that I brought a full pitcher of grape Kool-Aid to bed with me. I drank the entire thing and that night, I wet my bed. I couldn’t believe it! I was 10 years old. I didn’t have accidents! I knew something was wrong with me, but I didn’t know what. I was scared, but I kept it to myself. I never even told my mom I had wet my bed.

My parents also knew something was up. I wasn’t acting like myself and I was losing weight – something very scary for a small-framed-to-begin-with 10 year old. The final straw was when my mom took me and a few friends to Dairy Queen the week after school got out. We were celebrating the start of summer! My friends ordered their cones with dip and sprinkles and Blizzards with yummy additions, and when it came time for me to order, I asked for a glass of water. That was all I wanted.

We went to my pediatrician and after taking one look at me, they said I should go to the ER. There, we found out my blood sugar was almost 900. I was hooked up to some IV’s, poked and prodded, and then sent off on an ambulance ride to Boston. I was scared and exhausted and didn’t want any needles or shots (funny, knowing now what I was about to be faced with), but at the same time I was happy to be getting some help. I just wanted to feel better.

Once we arrived at the hospital, I was officially diagnosed with type 1 diabetes. It’s genetic. I knew my Uncle Billy had diabetes. He was also diagnosed at the age of 10. I spent a week in the hospital in Boston, learning all about this disease and how to control it. The worst thing for me was learning it was something I was always going to have; it doesn’t go away. There is no cure. Oh, and shots. I remember the nurses teaching me how to draw the insulin into the syringe, carefully remove any air bubbles, and practicing the injections into oranges. My brother even let me practice on him once! (With saline, not insulin, of course.)

Then it came time. Time for me to give myself a shot. It was so scary and painful, but I got the hang of it. On top of giving myself insulin shots, I had to learn to test my blood sugar, check for urine ketones, and watch everything I eat and how much I exercise. It’s a lot for a little 10 year old to take in!

That summer wasn’t fun. Instead of being excited for middle school, as I had been just a few months earlier, I was completely dreading it. I knew you couldn’t tell I was diabetic from the outside, and no one would know unless I told them, but I knew I was different. And to a 10 year old girl entering middle school, different was the last thing I wanted to be. I was already the youngest in my class, and therefore less developed than all of the other girls in my grade. I became depressed and developed low self-esteem, something I still deal with to this day. We told a few of my closest friends what was going on with me and taught them about any warning signs. Other than that, I tried to be as normal as possible, which was bad news. I just didn’t want to be diabetic.

I spent the next nine years basically pretending I did not have diabetes. I ate pretty much whatever I wanted, never tested my blood sugar, and took my insulin shots only when I felt like it, sometimes skipping them all together. I never felt good. I always felt sick. I was in and out of the hospital for pancreatitis and dehydration. I knew these things were terrible for me, but I didn’t want to be different. I was a stupid, rebellious teenager.

I knew there were many complications of poorly controlled diabetes, and I knew they could start appearing as much as 10 years after diagnosis. This scared me to no end, but I didn’t know how to take care of myself or where to start.

This all changed when I was 19 and got into a bad car accident. I ended up breaking my pelvis in two places and while I was in the ER, I saw a new doctor. I remember he asked what I had taken for insulin, and I replied that I was going to take a shot before bed but I hadn’t had any that day yet. It was midnight. He explained that I was supposed to take my shots before I ate meals – that was the whole point of insulin! I honestly didn’t even know that. Or maybe I chose to not know. Either way, I was in bad shape.

After that day, with the help of my new doctor, I started taking better care of myself (but still not great care). I was taking my insulin at the right times, but not always the right amounts. And I still was not eating the right things. Then two years later, my Uncle Billy passed away from complications of diabetes. He was only 40 years old. He battled the disease for 30 years but never really took good care of himself. In the 10 years before he passed away, he suffered from a stroke, a heart attack, kidney failure and nerve damage that resulted in a full leg amputation, all complications of type 1 diabetes.

I literally saw my life flash before my eyes. I saw this as my future. And that scared the crap out of me. I was only 20 years old and started thinking my life was already half over. I will forever miss my Uncle Billy, but his passing made me wake up. He didn’t have to die so young. If only he had just taken better care of himself… I didn’t want to die at 40. I wanted to get married, have kids, and watch them grow up. I knew it was time that I had to make some huge changes. And I did just that.

The possibility of an insulin pump was always available to me. However, I never wanted the tubes and wires that came with it.

The year after my uncle passed, while at the JDRF Walk to Cure Diabetes, I learned about OmniPod. It’s a tubeless, wireless insulin pump, and the thought of it made me jump for joy! I brought the information to my doctor and he referred me to an endocrinologist to get set up. It took almost a year to get everything in place and get started, but thank God I did. I’ve been on OmniPod now for six years and my only regret is not starting sooner. It’s a small pod, about the size of half a kiwi that sticks to my skin with adhesive. A cannula is inserted under my skin and delivers my insulin, which I prefill the pod with. It wirelessly communicates with a receiver about the size of a small phone. All of my rates and calculations (determined by my endocrinologist) are entered in the receiver, though I can, and do, make changes as needed. I test my blood sugar directly in the receiver, let it know how many carbs I will eat, and it determines how much insulin I need. I confirm and it delivers. Amazing! I change the pod every three days or when it has run out of insulin, whichever comes first. I’ve learned how to count carbs and calculate my basal rates and bolus amounts.

My A1c, a measurement of one’s average blood sugar for 3 months, has gone from 10 (an average of 240) to my most recent, 6.7 (an average of 140). A non-diabetic’s blood sugar should be anywhere between 80 and 120 at any given time. For mine to average 140 is amazing!! I feel good, better than I ever have in my life.

To top it off, because of the OmniPod and better control over my diabetes, I was able to have two perfectly healthy pregnancies and give birth to two beautiful babies!! Before OmniPod, I was not healthy enough to get pregnant or to stay pregnant. My doctor told me that when he started practicing medicine, which wasn’t that long ago, they did not encourage diabetic women to get pregnant. It was just too dangerous for both the mom and the baby. How sad is that? Again, I am so thankful for technology.

I am in control of my diabetes! Actually, I’m kicking its butt! Insulin is not a cure. Insulin pumps are not a cure either, but they sure do help.

Stayed tuned for Part 2 of Rachel’s journey to manage her diabetes, coming next week.