Life With Jenny: Type 1 Diabetes & Insulin Pumps

Technology has come so far. I was told at diagnosis that there would be a cure for diabetes by the time I was 18. I'm 36 and that hasn't happened yet.

I was diagnosed with type 1 diabetes in 1992 so just try to imagine the available medical technology we had back then. Type 1 diabetes wasn't really heard of - diabetes at all was not a widely discussed medical condition at that time. So treating type 1 diabetes required multiple daily finger pokes to check your blood sugar level, and then multiple daily injections of insulin. I think it's very interesting how insulin therapy has changed over the years. 30 years ago, I used a short acting insulin called 'Regular' and a long acting insulin called 'NPH'. My insulin regimen was a sliding scale, so basically I had this piece of paper where if my blood sugar was below 100, I didn't take any insulin. If my blood sugar was between 100 and 200, I'd do 4 units of Regular, blood sugar of 200-300 I'd do 6 units of Regular, etc. The doctor would adjust the sliding scale when I'd go for my check ups every 3 months. In addition to the sliding scale for the short acting insulin, I had to take the long acting both in the morning upon waking and before bed. I actually mixed the short acting and long acting in the same syringe. So if I needed to do 4 units of regular, I'd draw that up in the syringe, and then I'd draw up 10 units of the long acting insulin - in the same syringe. Now, I know this isn't really common practice anymore, but it was certainly standard practice when I was first diagnosed. Looking back on it now, I definitely appreciate that I was able to mix those 2 insulins and not have to do 2 separate shots in the morning and at night - not counting any additional shots I'd have to do during the day for a high blood sugar.

I stayed on this regimen until I was 23 years old! This older and probably outdated insulin therapy method mostly worked for me. And for the life of me, I cannot figure out why in all the years I'd see so many different doctors, not a single one wanted to change anything about my insulin therapy! I mean, there had to be better options out there then using regular and NPH. Nobody told me or offered anything new to me. At the age of 23, I was frustrated. I was having trouble with my blood sugars; they were running high far more often than I was comfortable with, and my sugar would spike exponentially from literally eating one Ritz cracker. I had a cracker one day and my blood sugar went from 122 to 388! One. Ritz. Cracker. It was crazy and I felt terrible and I was hungry! I checked my sugar again to make sure it wasn't an erroneous reading, and got 379. So I took some insulin to correct and I called the doctor. Of course, I had to leave a message for the doctor to call me back. He basically brushed it off and said well, crackers will raise your blood sugar. I protested because I had literally had one cracker. I convinced him to put in a referral for me to go to an endocrinologist I'd heard good things about. If one cracker was going to make my blood sugar go up that much, how was I going to be able to eat anything other than lettuce?!

My referral to the endocrinologist was approved by insurance and luckily the office had a cancellation so they were able to get me in pretty quick. I met with my new doctor who'd be managing my diabetes. I explained how long I'd had diabetes and the insulin therapy I'd been on. I was absolutely speechless after this appointment. I learned so many new things. She kept me on the regular and NPH for the time being but made some adjustments to the dosages to better suit what my body needed, which meant I was doing 5+ shots a day; she also explained how many things about diabetes had changed a lot since I was diagnosed. See, when I was diagnosed in 1992, I was instructed to count grams of sugar in food. I didn't do much with that information except be aware of how much sugar something had in it and try to eat things that had under 15 grams of sugar per serving. To my astonishment, the doctor explained how counting carbohydrates is much more efficient for diabetes management because carbs turn into sugar in the body. 😲 why did nobody tell me this?! In all the years I've been diabetic, nobody told me!! Ugh, I was frustrated and excited and speechless all at the same time. The doctor got me set up to get my first insulin pump which I thought was super exciting!

It took about a month, but it was finally time for me to spend an entire day at my endocrinologists office and get set up on my pump, do the training and spend the day being monitored. That was a long day. But when I left I felt like I had learned so much - I felt like a new person! I felt like I was going to be able to take better care of myself, and it was a great feeling!

That first pump I had was an Accu Chek. The funny part about this pump was when you got all of your supplies, you were also issued an emergency back up pump in case of pump failure. This pump actually worked pretty well. I used it for 4 years and had great A1C readings, I felt better than I'd felt in a while, it was good! About 6 months after we'd moved to Alaska, I experienced something super scary that I never expected.

I had recently started a new job. My husband had to get up super early in the morning, around 4:45am, I usually got up around 5:15 or so to see him before he left and be able to have my 'wake up' time before the kids got up and we had to hustle to get everyone ready and out the door to school and work. Well, this one morning I guess I wasn't waking up to my alarm. My husband was still home and heard my alarm going off but I wasn't getting up. He tried to wake me but said I yelled at him (I don't remember any of this) so he left and went to work. I'm not sure how long it was, but a little later, I woke up-sort of. I wasn't fully conscious, but I also knew something was wrong. I stumbled from the bedroom to the kitchen counter where my glucose meter was and managed to check my sugar, it was 38. I have no idea what I got to eat or drink but I know I got something otherwise I wouldn't be here to tell you this story! So my blood sugar came up and I felt better and went about my day as usual. It wasn't until that evening when we got home that my husband told me the details of what happened and how I yelled at him. I felt so terrible. He was just trying to check on me and make sure I was okay, yet I yelled at him. I still didn't remember it, but I felt terrible about it. He forgave me and everything was fine.

A couple weeks later, things were not fine.

It was another early morning, almost identical to the last time. My alarm went off but I wasn't getting up or turning it off. Steven tried to wake me but I yelled at him again. So he went to work. He was in a course that he could not be late to so he had to go - in hindsight, he probably should have taken me to the ER but hindsight is always 20/20. Anyways, this time, I didn't wake up a few minutes later. This time I woke up nearly 6 hours later and I wasn't in the bedroom anymore, I was in the living room on the couch. I have NO idea how I got there. I don't remember walking down the hall, nothing. I woke up to both of our daughters next to me, our youngest, Erica spoon feeding me peanut butter. She was just putting peanut butter in my mouth. Thankfully, some of that peanut butter must have gotten into my system and I started to wake and realized something was very wrong. I had missed calls and text messages from my boss, the girls had missed school, I felt so confused. When I came to, I sat up and ate some more of the peanut butter and then I realized I had to pee so badly it felt like my bladder was going to burst. I stumbled to the bathroom and literally couldn't hold it until I sat on the toilet - needless to say there was a bit of a mess to clean up! I was trying to text my boss back and explain what happened but my fingers wouldn't cooperate. I went to the dining room and saw the cupcakes on the table that we'd gotten the night before - I had to have one of the girls open the package because I just couldn't and then I ate 2 of them so fast. While still trying to swallow the cupcakes, I checked my sugar and it was 29 - that's after I don't know how much peanut butter and cupcakes I was still trying to ingest. How low was my sugar before this? I was literally passed out cold for HOURS.

Once my blood sugar started coming up I felt so scared. I felt like I was having a panic attack. I felt like a terrible mom, the girls had missed school, I missed work, my kids found me passed out on the couch - the terrifying thought is what if I hadn't made it? What if I had died on the couch that day next to the girls? It's an absolutely horrifying thought. Erica was just 5 years old and Ryann was 6. I can't praise God enough for telling Erica's tiny self to get mommy peanut butter, I can't praise God enough for keeping me on this earth that day and every day since then. Thank you, Jesus.

After going through that terrifying experience, I was so scared. I was checking my blood sugar multiple times a day, I was eating more. I called my doctor and asked for a referral to an endocrinologist here in Anchorage. I got in pretty quick this time as well and told him what happened. He said the pump I had was 'okay' but there are better options out there and since I had a loss of consciousness episode, he thought a pump with a continuous glucose monitor (CGM) would be great for me. I got set up with the Medtronic pump and CGM and had really good results with it. It was comforting to know that my blood sugar was being monitored constantly and an alarm would go off if there was a blood sugar related problem. We made a family plan for what to do if I was ever in a similar situation again. Things were better, my blood sugars were more in control.

I haven't had another episode like that thank the Lord! I had the Medtronic pump for nearly 10 years until it failed on me. It failed on me BIG too. Long story short, it wasn't delivering my basal insulin and I'd gone the entire night with no insulin on board and woke up feeling pretty terrible and had a blood sugar of 600. I got my sugar down that day and was okay, but knew I couldn't use that pump anymore and I didn't have any backup insulin therapy methods. I called the doctors office and they had me come down right away and got me all set up with short acting and long acting insulin. I actually took a pump break for 10 months! It was a good break - definitely needed that reset. Doing multiple shots a day was a lot to get used to and some days I really didn't want to eat because if I ate, then I'd have to do a shot for the carbs and I didn't want to do a shot, again. So, while taking a pump break was good for me to reset and be more involved with my diabetes care, it did make it difficult to deal with my undiagnosed eating disorder.

After 10 months of shots, I was ready to get on a pump again. I now use the Tandem TSlim X2 pump with the Dexcom G6 CGM and I cannot tell you how much I LOVE THIS PUMP AND CGM!! The technology of this pump is amazing and I've had my lowest A1C reading to date - 5.6%!!

While the little girl inside me is disappointed that there is not a cure for type 1 diabetes, I am so very thankful for the continued research that has been done so that type 1 diabetics can live longer, fuller, happier, healthier lives. Being diagnosed in the early 90s, I was told so many scary things like I have to do the shots or I'll die, or that when I'm older I will likely suffer from complications of diabetes like blindness, kidney failure and neuropathy. I am incredibly thankful that I have zero complications as of yet and I've lived with this chronic condition for 30 years!

Diabetes is not easy to manage. So many scary things have happened to me and can still happen. The lows are scary and so are the highs. You feel like crap when your sugar is high or low. I personally have anxiety and panic attacks when my sugar gets to be about 60 or lower. I feel like I'm out of control and I can't think straight and I just feel scared which leads to panic/anxiety. Sometimes I have trouble communicating when my sugar is low, sometimes when my sugar is starting to get high, I'm cranky, just out of nowhere. An interesting symptom of high blood sugar that has developed as I've gotten older is when my blood sugar starts to get into the mid 200's, I start to yawn almost uncontrollably! So, if you see me out there yawning like crazy, ask me if my sugar is okay - because I might not realize that it's getting high! 😉

Diabetes is an invisible disease. I look just like everyone else, you can't tell by looking at me that I have a chronic condition that requires constant management. Not many people besides my immediate family know of the struggles, the hard days, the exhaustion, the burnout, the annoyance that I experience. Diabetes is hard and definitely not for the weak! Know that if you're also a type 1 diabetic, I see you, and you're strong! You can do hard things! You are a warrior and can conquer each and every day! I'm thankful that God got me through the many hard things in my life so that I can sit here today and write about all my experiences and share my stories so that others know they aren't alone. I thank God for giving me the boldness to be raw and real and share with the world about me, but especially giving me the opportunity to praise His name through each blog post. God is good!

Thank you for being here. Thank you for supporting me by reading my blog, liking, and sharing. Connect with me! Let's build this community together! Until Tuesday...

xoxo - Jenny