((Note: If you’re travelling here from Diabetesaliciousness and want to get straight to it, go ahead and skip to START HERE. If not, read on…)
If you’ve been hanging around the DOC for any length of time, you undoubtedly know who K2 is—Kelly K. at Diabetesaliciousness. Kelly is wise beyond her years and a rockin’ good chick who makes a mean mojito (or so I’m promised). The L1, that’s just me—Lora, with one L. I don’t have a cool nickname (although Kelly did refer to me as Lorabetes, which I thought was wicked fun).
Kelly has had diabetes for a really long time, and was diagnosed as a kid. I’ve had diabetes for a relatively short time, and was diagnosed as an adult. The two of us got together and decided to have a conversation about how different and how much the same our experiences have been with the Big D.
The conversation actually starts on Kelly’s blog, Diabetesaliciousness, and finishes up here (two, two, two blogs in one, errr…one, one, one blog in two!). After you’ve read part one…
Kelly: Your turn to answer: How and when did your diabetes education formally begin?
Lora: Baptism by fire. You know how the doctor said I should go to the hospital if I started throwing up? On Sunday, the day before I was supposed to go back to the doctor and learn everything, I was home alone and started throwing up. Projectile vomiting all over the bathroom, every five seconds. After about 15 minutes of non-stop, I finally caught a temporary break, grabbed my car keys, my bottle of Lantus and drove myself to the hospital.
I ran into the emergency room, threw the bottle of Lantus at the nurse and told her I had just been diagnosed with diabetes. She asked me what my blood sugar was and I told her I didn’t know. She started to lecture me and asked me why I hadn’t checked and I told her I didn’t know what she was talking about. She started to cuss out my doctor for not giving me a meter when I motioned that the vomiting was about to commence again. They immediately threw me in a bed and I spent the next week on an insulin drip in the ICU.
I thank that hospital every single day because as soon as they realized I had no clue what I was doing, they set up appointments with a CDE and a nutritionist and I got a crash course on how to be a diabetic, and some lovely pamphlets to take home for reference.
Kelly: You did go through baptism by fire! Hey, was “Mr. Hypo Is My Friend” one of the pamphlets??
Lora: No. Because I’m sure I would have remembered that one, and probably hung it on my fridge! Let’s talk about shooting up. Did they teach you how to do injections while you were in the hospital? Were you scared? Did your parents shoot for you?
Kelly: I was terrified of needles and would immediately start to shake and cry. I remember one nurse being afraid to give me a needle and saying something like: “She’s terrified. I’m afraid she’s going to pass out if I give this to her. She’s shaking.” I remember trying not to cry when it came time to shoot up. I’d actually stop crying and start shaking. The whole being- afraid-of-shots thing was why I was in the hospital for three weeks after diagnosis—they didn’t want me to leave until I could inject. Which I just realized now. WOW.
When I came home, my parents and my sister began giving me my injections. About a month later, I started doing it myself. My first shot took forever to inject and it was in my thigh. I remember my sister telling me to just stick it in and get it over with, but I did it my way—slow and steady.
After the first one, no one in my family ever gave me an insulin shot again! I realized that when I did it myself, it hurt less. Plus, and this might sound odd, but being able to inject my own insulin at age eight really gave me confidence and freedom. My friends thought I was brave. I remember my friend Theresa being amazed when I tested my urine sans the tape. I used test tubes and fuzzy pills and my bathroom looked like a lab—COOL. Also, injecting meant I could go on sleepovers without having my mother come in the morning to give me insulin. I knew what to inject and the sliding scale for high glucose levels in urine. I was proud I could do it on my own. Looking back, though, it might have been better if my mom had come over in the morning. But this was preglucose testing and the rules were different—and incredibly archaic.
Lora: Sounds like you were able to take control pretty quickly. Maybe there was an actual bit of Quincy in you…
Kelly: What about you? Were you afraid when you first starting injecting?
Lora: Terrified, just like you, even though I was 26 years older! I was the little kid who had to be held down by my mom and two nurses so the doctor could give me my vaccination shots. My first solo shot, I sat on the edge of my bathtub for over half an hour, reading the Lantus instructions and trying to screw up the courage to jab my thigh. I kept shaving off a couple of minutes each night until I could do it in a timely manner. Still not my favorite thing to do, but you do what you have to, right?
And by the way? I agree that’s it’s much easier to give yourself a shot than to have someone else do it. I’ve never had anyone give me an insulin shot.
Kelly: Seriously—you’re my SHERO! SO, did you ever blame yourself for your diabetes?
Lora: At first. I thought maybe if I had eaten better, kept my weight under better control and exercised more, I could have held the diabetes at bay for longer. After all, I had gone 34 years before it reared its ugly head, couldn’t I have gone even longer if I’d made the planets align just so? I was also in a bit of denial. I kept thinking maybe the test the doctor gave me was wrong. Did I have Gatorade that morning, thinking it didn’t count as fasting? Could that have thrown my blood sugar off and caused a misdiagnosis? Then I’d stop myself and remind my brain that DKA doesn’t happen because someone drinks Gatorade.
I could be wrong, but I think as an adult, you tend to look for reasons why and to place blame. As a kid, I think you just accept that’s the way it is, even if you don’t like it. I think my parents were a little more like the kid in my diabetes diagnosis; they didn’t really know what it meant, and they accepted what I told them. How did your parents handle your diabetes?
Kelly: My parents were very much into making me take ownership for my diabetes. They wanted me to be independent, and they set some wonderful examples. Exercise was paramount, as was diet, yet they still allowed me to have ice cream and be a kid. Honestly, Lora, our house was a diabetes pressure cooker. Looking back, I know my parents were under a tremendous amount of stress, and I truly think they were overwhelmed by diabetes and were just doing their best to survive day to day. I think they felt worse about it then I did. To this day, I have no clue how they did it.
Lora: How did you handle your diabetes as a kid?
Kelly: I hated that MY disease hurt my parents so much. I felt so guilty. I tested my urine and yes, sometimes I lied about the results. I’m not proud about that, but I was afraid of my family’s reaction to a high reading. I saw how upset and sad they became when my tests were high. I started lying about my results so I wouldn’t see the pain in their faces. I don’t blame them; they had SO MUCH on their plate. But, I was and am a people pleaser, so lying about my numbers made sense at the time.
I didn’t want my parents worrying about me. I kept a lot in as kid. I’d make them laugh and admitted to nothing. Everything was always fine, even when it wasn’t; I would rather cry in my room at night than worry the people I loved.
I remember getting the flu in the middle of the night and not telling my parents until the morning. I just grabbed the bucket, some ginger-ale and Saltines, and went back to bed. I told them I was sick in the morning. They were so mad—they were afraid of me going into DKA. But I saw how much time my sister being sick took from them, and I just wanted them to get a good night’s sleep.
Lora: Sounds like, as a kid, you felt more accountable about your diabetes to your parents than to yourself… At what age do you think you truly took control of your diabetes, and did it for yourself?
Kelly: There was no real “this-is-all-me” moment. I knew that when I moved out of my parents’ house, and even when I was in it, that my diabetes care was up to me. I didn’t do great with my diabetes in college or immediately after. It wasn’t until I was 25 that I started really owning it. Once I started owning my diabetes, it ceased to own me. I became empowered and I felt great.
I started the pump in my early 30’s, after my endo begged me. Pre-pump, My a1c was very low, around 6.4, because I was working out like crazy at the time. BUT, my stomach looked like a freaking color wheel—various shades of green, yellow, and purple. My endo made me a deal: If I tried the pump for one year, I could get rid of it if I really hated it. I agreed and have never looked back! I love it!
Lora: We’ll definitely have to have the pump discussion down the road. I think I’m as reluctant about it as you sounded. Do you remember life before diabetes? As a seven-year-old… ;)
Kelly: Lora, I’ll answer any pump questions you might have—I know that you’d LOVE it. Life before diabetes barely exists in my memory. Before I was diagnosed, I was surrounded by insulin junkies. I grew up drinking Tab even when I didn’t have to.
Before my diagnosis, I remember Pixie Sticks and Fun Dipp; “The Wonderful World of Disney” on TV every Sunday night; tap-dancing lessons on Saturdays; and gymnastics on Mondays, Wednesdays, and Fridays. Summer days were spent on the beach and going to the Margate Movie House for free whenever I wanted, drinking ginger-ale from a real glass during “Bambi” because my brother was a theater usher.
Those same things occurred after dx as well....sans the Fun Dipp and Pixie Sticks. That pre/post diabetes line is severely blurred, which is probably a good thing...
Of course there were times when I wanted to be “normal,” but diabetes didn’t make me feel not normal or dorky. I felt different because of my looks and my interests, not necessarily because of my disease. I’ve had my F Diabetes moments of course, just like everyone else.
Lora: Sounds just like my childhood, complete with Donald Duck and minus the gymnastics—I’m so uncoordinated. Definitely not gifted in that area…
Kelly: But gifted in others…because of diabetes! What gifts has diabetes given you?
Lora: A true appreciation for irony. I hated shots as a kid, now I have them daily. I hated math all through school, now I have to count, multiply, divide carbs and insulin units every couple of hours. All the foods I love the most are the ones that mess with my sugars the most.
I also have a little more courage than I used to. I’ve always wanted to travel and had just started about three years before my diagnosis. I was afraid diabetes would stop that and I refused to let it. Four months after dx, I flew to Tokyo for vacation, just to prove to myself I could do it, and everything else I wanted to. Without the dx, Japan might still have been on the back-burner, while I explored safer options. I had to come up with that courage and keep it in the forefront to conquer quite a few things.
I’d also have to say I’ve come out of my shell a little more. I can be shy by nature, but I realized really quickly that if I need information and answers about my diabetes, I have to speak up and ask the questions. I also put myself out there with my blog. I’ve kept a personal diary since I was 10 and have always kept everything pretty close to the vest. With the diabetes, I felt like keeping it too close to me wouldn’t do me any good; I would obsess without anyone stopping me and have pages and pages of worries and admonishments if I left it all in my journal. Externalizing everything I’m thinking and feeling and worrying about with diabetes helps me keep things in the proper perspective.
And, of course, I consider the folks of the DOC a gift. I don’t know anyone personally who has diabetes, so it’s nice to read about what other people are doing. I learn a lot about the technical side, and the emotional side. K2, you are an excellent teacher!
Thank you, thank you, thank you (K2 and L1 take a deep bow). We’re here every day on the DOC—you just gotta look for us….
As always, more to come…