One might call it a wake-up call… where I might tend to call it my pass-out call. Living with T1 D for the past 16 years, I have never had such an awakening as a few weeks ago. But first let me tell you a bit about myself, so that you might understand me better (before judging me & my D, thanks!).
My life with type 1 D has been like many T1’s experiences. There’s the good days, bad days, and days where it just feels like you’re riding the diabetic rollercoaster from hell. From feeling like you have a handle on control to feeling hopeless, helpless, & the only thing that truly gets you through the day is that wonderful thing called denial. I’ve never experienced true denial like I have seen with some of my D friends and patients that I’ve treated in the hospital, where they totally fail to give themselves insulin or just didn’t feel like wearing their pump that day (that severity of denial is still difficult for me to understand as it is truly a death sentence). But I’ve been through a lot of stages with my D, through adolescence & teenage years to college and life afterwards. I remember being graded on my blood sugars by my CDE in the first years I was diagnosed & that just encouraged me to “fake” my way through my logs for the longest time. I was never ashamed of my D & enjoyed teaching my friends about the disease & how to take injections & prick my sugars. Many slumber party activities included my friends checking their sugars and my amazement at such normal sugars (Hoping in vain that I could pull off one of those numbers for my log, that could possibly bring my diabetes logbook grade up to a C-!). Diabetes was just such a pain for me, especially before pumpy (yes, not too personal of a name for my pump, but it is a “she“). I was active in sports throughout the years & my stomach ached through most of it, having to shove food in my mouth before (& many times during & after) a meet or practice and dealing with severe nighttime lows. There’s nothing like the zombie like state with a BG of 21 & then coming back to consciousness with a mass of empty food wrappers surrounding you in the kitchen. I never stopped a sport because of my agitation with D, but I was surely jealous of my “normal” friends who didn’t have to do all this extra work (& eating!) that I needed to on a daily basis.
Finally, once in high school I became more controlled with my first pumpy along with being followed by a real Endo (not primary care). I got my A1C down to the 7 range, which was quite a feat for me & my poor Endo. Life was good, but oh so regular. The key to my “low” (yeah, I know it’s supposed to be under 7) A1C was my regular, same old routine life (& fairly boring I might add). I ran in the morning, went to school, worked, ate dinner, ran some more & went to bed. Wash, rinse, repeat (*yawn…*) But then, college happened & my whole D control pretty much went out the window.
College is fun, exciting & a bit stressful. Okay, so a “bit” might be under exaggerated for some people (such as people like me with T1 D who thrive with regular, standardized lives but come crashing down with erratic schedules and new environments. Endless hours at the library typically make for crappy high sugars all day or sometimes when you’re so involved with a project, you don’t realize you haven’t eaten in 6 hours and you find yourself with a sugar of 40 on the 3rd floor of the library with no vending machine or sugar pills in sight! (insert expletive here). Oh, but of course college is not all about studying or striving to obtain that degree you ever so hoped for. It’s about becoming independent, making friendships & discovering yourself. Along with many celebrations, it seems my friends and I found a reason to celebrate quite often in college, which made controlling my D almost impossible. But, man those celebrations are practically a requirement after some of those horrid finals. I made it through college without a complication or scary hypoglycemic event. But I ran what I call the 789 roller coaster. My A1C’s rolled their way from 7 to 9 & back again. I didn’t make the healthiest choices all the time, but sometimes you really just need a break to keep your sanity. I went on to graduate with my BSN in Nursing, but I continued to fail to truly control my D (or demons, whatever you‘d like to blame it on). There’s definitely some correlations I’ve made about nurses & living an uninhibited lifestyle, but I’ll have to blog about that later. On to life post-graduation…
So life after college turned out to be just about erratic as before & I never could get off that damned 789 rollercoaster. It’s not like I was sedentary & out eating candy bars or bingeing on food. I ran several miles a day & went to the gym quite often. But I simply lived my life, corrected my highs, probably over-ate for my lows & tried to live like everyone else. I think that’s been the problem, “trying to live like everyone else.” For the past 8 years, that’s what I’ve been doing and finally my body has told me “no more.” After working as a nurse since graduation, I’ve traveled across the country, working & living in once foreign places and meeting interesting new people. I loved it… my D did not. My D hates cross-country road trips and 12 hour drives. It hates crossing time zones and the stress a new move (new life) takes on the body. Again, I don’t regret anything I’ve accomplished because it‘s matured me & I‘ve learned so much about myself and being independent. But I think my D (& Endo) are a little upset about it, since they‘ve been on the back burner for the majority of my life. So that pretty much sums it up for my ride on the 789 roller coaster for most of my life. I have known that I have the capabilities and knowledge to control it better, but I have been just soo busy with “living life,” I really just didn’t have the time for that stuff. That is until four weeks ago when I had my first wake-up call.
Four weeks ago, I was just living life like usual. Not totally ignoring my D, but it definitely wasn’t first on my list. Doesn’t my doctor know I have so many other important things going on rather than worrying about why my sugar was randomly 269 this morning? I’ll just correct it & move on, failing to look for any reasons other than the usual… you know, the whole diabetic thing. Anyways, one regular night in December I couldn’t fall asleep. Watching “The Office” reruns just wasn’t cutting it & I felt so wide awake. I’ve noticed on some occasions I can’t fall asleep with a dropping blood sugar, so I tended to keep it above 140 before bedtime (otherwise I wake up in a pool of sweat, dizzied with a sugar in the 40’s & since no one likes that… I kept it higher). Anyways, my meter was upstairs so up I went… up, up, up & so did my heart rate. I guess going up a flight of stairs at 1:00AM was a lot harder than I thought. Strange thing though, my heart usually doesn’t pit-patter like that unless I’m super low… better find that stupid meter with no backlight. Found it, checked & “68”.. hmm not bad, guess I’ll have a juice & my PB sandwich then back to bed I go. Grabbed the OJ jug out of the fridge & really contemplated about just chugging from it & putting it back, but in fear of my room-mate scolding me, I decided I should probably get a glass for his germophobic sake. I opened the cabinet & found myself grabbing at air instead of the glass, then next thing I know I’m eye level with the kitchen rug & my precious OJ was running all over the floor. My head felt like a hundred pounds, my body soaked through & through & I could only guess my seemingly short episode of syncope was due to my quickly dropping blood sugar. I failed to recheck my sugar, as I’m sure my liver & hormones had kicked in by now, saving me from the “Gon.” I finally got some OJ, and overcompensated for my low by gorging on food (somehow my hypoglycemic brain/stomach is always so fearful of going low again in the same night.)The next day I vowed to not allow D to control my life. The following is how I’m working on that exact challenge.
In the past month, I’ve seen my Endo, checked my A1C (great, now I’ve upgraded to the 8910 roller coaster) and back to wearing my CGM. I’ve gone from checking my sugars 2-4 x a day to 8-12. I’ve been keeping up with my logs (no fake sugars!) and everything in my life has been written down for the last 28 days. Yes, I’m being obsessive-compulsive and yes, I’m checking my sugar more than needed. But this is the only way I know how to get back on track. My sugars have been too high for too long & I’m ready to get off this horrid roller coaster. I’ve measuring, counting, and weighing all my food (ok, well most). I “CalorieKing” any food that doesn’t have a nutrition label and I’ve kept my snacking to a minimum. Becoming more familiar with “up to date” diabetic information has really showed me that there is need for improvement. I’ve been back at this for only a month and I feel like this “current” information & software is so 1999!
My pumpy lacks so many features that would allow me to gain more control over my D and this carelink software is no more than plotting dots on a graph for the love of God (oh, with hourly averages that I‘m sure any person with a brain could invent on an excel spreadsheet). Don't worry, I'll be blogging about my ideal Carelink software shortly!
I bought the book, “Pumping Insulin” by John Walsh & trying to convince myself that I know nothing and start from scratch. The book has been helpful, but it’s a little outdated & I would really like to see a book for more advanced pumpers, especially those with multiple schedules (varied basal patterns) and more info on the effect of exercise & how to accommodate basal rates, carb ratios, etc. Also, I have no idea why he would recommend such a high carb diet for T1 D's trying to control their post prandial sugars.
I’m back at this for such a short time & I’m already irritated with the lack of up-to-date information and old software….*sigh* I guess I’m already behind on my logs at the end of this post.