T1D: Coming Out

When I was 18 years old, I went in for a check-up at University Health Services. A few days after my appointment, my blood-work came back. I was on the train when I listened to the VoiceMail. “You blood sugar was elevated – 256 – quite high actually. I’m sending out to get another test and will get back to you.” A few days later in her office…. “Your A1C results came back and it was 8.8%. That’s a measure of your average blood glucose over the course of three months. You don’t have ketones, but you’re spilling sugar in your urine. This looks like Type I Diabetes to me. I am referring you to a specialist at Joslin Diabetes Center, please make the appointment.”

What came next was kind of a blur. I remember crying, and thinking “I can’t have Diabetes, this is a joke.”  As many people, at the time, I was not well-educated about Diabetes (even something as simple as the different types). Having met and worked with very many type II Diabetics at work as a pharm. tech, I always had the stereotypical picture of an overweight, older person in my mind (yes, TIIs, I know it’s a stereotype, and I am sorry). So how could I – an 18 year old college student, at my 120 lbs. have this disease? My family didn’t help – they were just as uneducated and were assuring me that if I just went on a diet and exercised more , my “Diabetes” would go away. Regardless of how WRONG I know that was now, I was more apt to believe in that theory than even beginning to accept that for (likely) the rest of my life, I would have to inject (to me injecting seemed scary as hell and to be avoided at all costs) myself with insulin. My mom’s even more uneducated “insulin will make you gain weight” statement didn’t help that… The physician at Joslin sucked. She did not care at all, leaving me in tears, and no closer to wanting to accept this diagnosis or seek treatment. My C-peptide levels were still normal, which lead to me convincing myself that this was all a mistake, and to ignore this, as it would all go back to normal…

Of course that’s not how it turned out. But it was another 18 months before my first shot of Humulin R… About six months after diagnosis, the symptoms came at me with a vengeance. I will not go into much detail here, as I’m sure you’re all familiar – non-stop thirst and urination, pronounced weight loss, fatigue, depression, DKA, DKA, DKA. I remember feeling like I was going to just fucking drop dead if I didn’t chug that bottle of water. Five minutes later, I would need another…

As I sat in my biochemistry class (getting up to pee at least twice during the 1-hr lecture), we learned about metabolism on the molecular level, and discussed common metabolic disorders like T1D in great detail. It was then and there that I knew – I definitely had T1D, and all those myths I’d been hearing about from my family and other non-Med folks was just that - uneducated banter.  After some point, I think that everyone I knew that cared about me were just working to get me out of denial and into treatment – my mom, my teachers, my doctors…

Finally on April 18, 2008, two days after my 20^th birthday, I checked myself into Mass General Hospital. This occurred after I went into University Health Services to treat a respiratory infection, and they basically told me that giving out an Albuterol inhaler and a Z-Pack to someone with a blood glucose level of over 600 was a huge liability. They got my PCP on the phone and he pleaded with me to go to the ER. I obliged. I knew that this was over, and if I didn’t deal with it now, I would die. Although at that time, I would have taken death over the life I was living anyway. I weighed in at a scary 96 lbs.

Once in the hospital, I was ready to face it all. It was pretty bad: the DKA. My A1C was “over 18%” (:0).

I was there for two days, while the physicians ran test after test to make sure I was/would be OK. I was (and AM) OK. I told myself quietly in my head - “this will take 10 minutes out of your day (tests and injections {haha, I was quite naïve, no?}). You will take care of this and you will feel better. Accept this. Because nothing can be as horrible as the last year. And you will live a full, independent, free, and happy life. {all true}”… Walking out of the hospital two days later on 4/20, I felt as free as I had even felt. My vision wasn’t blurry, I wasn’t thirsty, and I didn’t have to pee. Best of all, I could actually enjoy food again. And on the long train rides to Quincy – I didn’t have to pee.

The injections became less scary and became a good habit – like washing your hands.  A few weeks later my A1C was 10%. Another two months and it was 6.8%. I remember my first low (42, more on that later). Coming out: (all my A1Cs since: 6.9%, 6.3% (2008-2009) – carefree undergrad years =); 8.3%, 7.6%, 7.6%, 7.8%, 7.1% (2010-2013)). Looking back, I probably had more lows in that first few years of treatment than I can expect to have during pregnancy (based on what I’ve read anyway). Today, I test more than ever and have recently started using the Dexcom Seven+ (I love it!). I haven’t had a BG of under 70 for at least 6 months and I see the 300s about once (OK, maybe twice) a month. I know I can do better – hearing (reading) from all of you other T1Ds out there has made me more motivated than ever!

Diabetes certainly presents its challenges. After undergrad, I spent a year in Spain. It was stressful and I lacked strips. When I came back to the states: 8.3%. Graduate school is also stressful. Life is a big balancing act and T1D certainly doesn’t make it less so. Nevertheless, I still believe that it’s (almost?) as much of a blessing as a burden. It has definitely made me much more motivated (and much less stupid) in many ways.

I hope this reaches someone who is/was in a similar place as I once was, because as I have recently learned from the online diabetic community – you are not alone.