We’re hosting a free climbing event for kids and teens with type 1 diabetes and their siblings on March 12th, 2016, 5-7 pm, Central Rock Gym, Worcester, MA. While kids climb, parents can attend a presentation by Toni Fiori, RD and Nancy McShea, RN, CDE on “Power Food.” At 7 pm, Erin Spineto, founder of Sea Peptide Salties, is going to talk to us about how she uses adventure as a powerful motivator to stay on top of her t1d management. It’s going to be a great evening of climbing and connecting with other families affected by type 1 diabetes. Please register if you plan to attend. We hope to see you there!
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I have always loved data. When I was in 2nd grade, my mom forced me to get a really short haircut because she was tired of trying to get the knots out of my longer hair. She tried to convince me that it was flattering. I decided to prove her wrong by administering a survey to my classmates. I was right. Pretty much everyone hated my haircut. Data do not always tell you what you want to hear, but they do always provide information.
When Dexcom released their Share feature earlier this year, I was ecstatic that I would be able to see Liam’s blood sugar 24/7. I thought it would be reassuring. Yay, CGM data in real time! I did not anticipate how stressful it would be. The first day after we activated Share, my phone registered LOW at just the time I knew he would be boarding the school bus to come home. On more than one occasion, I have sent the school nurse running down the hall with glucagon in hand, and she has found a perfectly safe lad chomping on glucose tabs.
The interesting thing about the Dexcom Share is that it makes Liam both more and less independent. We feel comfortable giving him more latitude in outings with his friends, and we no longer make him check in with the school nurse before lunch and gym class. However, both of his parents are now stalking him every moment of every day. We know every blip on his CGM in real time.
Share creates a similar paradox for us as parents (i.e., stalkers). We are both more confident that he is safe and more anxious about his safety. Knowing Liam’s blood sugar values in real time helps us to ensure his safety. However, what is going on with his blood sugar is sometimes ugly and anxiety provoking.
After the most recent episode of asking the school nurse to check on a boy who had everything completely under control (but wasn’t responding to my texts), we have agreed on a new system of communicating during Dexcom low alerts. Liam has agreed to text me to let me know that he’s taking care of it. If I don’t hear from him, I have reserved the right to sic the school nurse on him.
Written by Susan Ramsey
Our son Liam was diagnosed with type 1 diabetes (t1d) almost 5 years ago. Through a combination of good luck and amazing technology, we have been incredibly fortunate and have avoided the things that we fear most. Most days, t1d is an annoying hassle, but there are days when it takes over our lives and scares the pants off of us.
This past weekend, we were in Boston for a music festival. We took a break from the music festival to climb at a local gym and go out to lunch. When we got back to the hotel, Liam started complaining about stomach pain. His blood sugar was starting to go up after a high carb, high fat lunch. He corrected but continued to complain about his stomach. A few minutes later, he was acting really goofy (not uncommon for our 12-year-old boy). He started to climb onto one of the hotel beds and fell on the floor. We thought he was just being silly until, on cue, all of our devices that receive Dexcom data alerted LOW! Steve picked him up off the floor. He was conscious but covered in sweat. I gave him a bottle of liquid glucose and a tube of glucose gel while Steve mixed the glucagon solution so we would have it ready if necessary. He tested at 30. He then devoured another 40 g of carbohydrate, and his blood sugar started to rise. Several hours later, his blood sugar soared into the 400s. He felt terrible and looked like he had been hit by a bus.
In hindsight, the low probably happened through a combination of an overly zealous correction for the rising post-lunch blood sugar and post-exercise effects (in addition to whatever growth spurt/hormonal factors are currently at play). The incredibly scary thing is how quickly it hit. What if he had been on the school bus at the time? The vulnerability that accompanies t1d is the thing I hate the most.
- Liam’s lows are not always going to have the grumpy, sluggish, spacey presentation.
- Adolescent blood sugars appear to be as labile as adolescent emotions.
- After 5 years, we have learned so much yet know so little about how to be a pancreas.
Written by Susan Ramsey
We’re hosting our 2nd Annual Rock Type 1 Adventure Challenge for kids and teens with type 1 diabetes and their siblings on September 19th (with a rain date of September 20th), 2-6 pm, Lincoln Woods State Park, Lincoln, RI. Come climb on real rock with us (we’ve scouted out a bigger and better rock face)! We are planning lots of other fun activities, including hiking through the woods, bouldering for older kids, slacklining, and climbing on Rock Spot Climbing’s portable rock wall. This event is completely free of charge, and absolutely no climbing experience is necessary.
When our son Liam was diagnosed at the age of 7, the Certified Diabetes Educator who was training us in all things type 1 mentioned a sleep away camp for kids with t1d. I could not imagine that Liam would be ready for a week-long sleep away camp the following summer. I generated about 10 reasons why it wouldn’t work for Liam to go to camp. I contacted the camp director who very patiently addressed each one of my concerns. I relented and registered him for camp. I was a wreck when I dropped him off that first year. Leaving him in someone else’s care for the week was miles outside of my comfort zone, and it was one of the best parenting decisions we have ever made.
For one week out of the year, Liam is with kids who face the same challenges he does. Everyone has to do a blood glucose check before eating. Everyone has to count their carbs and bolus. Everyone has to be on the lookout for highs and lows. There is a level of understanding among his fellow campers that we just can’t provide no matter how hard we try.
I think about that decision to send him to camp every time we’re faced with a new t1d situation that falls outside of my comfort zone. It’s a reminder of how important it is for me to be brave and allow him the space he needs, particularly as he approaches adolescence.
Steve and I now skip across the parking lot when we drop Liam off for camp. We know he is going to have a blast and will stand a little taller (literally and figuratively) at the end of week. As a bonus, Steve and I get time to ourselves and 5 nights of uninterrupted sleep. No alarm clocks set for the middle of the night. No Dexcom alerts. Sleep.
Thank you, Camp Surefire!
Written by Susan Ramsey
When we left the hospital after our son Liam was diagnosed with type 1 diabetes, we swung by our local pharmacy to pick up the supplies that we now needed to keep him alive. We knew that the endocrinologist had placed several orders, but we had no idea what we were getting into until the pharmacy tech handed us a grocery bag full of glucometers, test strips, ketone strips, lancet devices, lancet drums, insulin vials, insulin pens, glucagon kits, and syringes.
I’m sure I must have looked like a deer caught in the headlights when the tech asked me the obligatory, “Do you have any questions for the pharmacist?” I was too exhausted to articulate even one of the 7,000 questions buzzing around in my brain. Instead, I shook my head.
As the tech was ringing up all of our items, the young pharmacist (anyone younger than me is young) who was on duty came out from behind the counter. I braced myself for more information that I wasn’t going to be able to process. Instead, he opened up his white coat and showed Liam his insulin pump. I have no idea what he actually said to Liam. That entire weekend is a bit of a blur. The gist of it was something like this. “I’ve had type 1 diabetes for a long time. It’s not that bad. You’ll still be able to do everything you like to do.” It was a small act of kindness that had a huge impact. I smile at that pharmacist every time I see him. Someday I will have the composure to thank him for what he did that day without looking like a blubbering idiot in the middle of the pharmacy.
Written by Susan Ramsey
Our son Liam was diagnosed with type 1 diabetes four years ago today. I’ve been thinking a lot about things I wish I had known on that very first day and the advice I would give my t1d-day self.
- He’s going to be O.K. He’s a smart, resilient kid. There will be days when he feels completely overwhelmed by t1d management, but most days it will just be a big hassle.
- You’re going to be O.K. You and Steve are going to be more tired than you were before, and you’re going to worry more. However, this post t1d-day world will quickly become your new normal. Similar to becoming a parent, you will soon forget what life was like before the diagnosis.
- Just say no to horror stories. If you see the words “dead in bed syndrome,” do not under any circumstances keep reading. The reality is that you and Steve are going to do everything that is humanly possible to keep your son safe. That is all you can do. Reading about t1d kids who have died in their sleep is not going to be helpful. It will only make you more anxious, and your son doesn’t need a more anxious parent.
- There are people who are willing to help. If it takes a village to raise a child, it takes a metropolis to raise a child with a broken pancreas. There are people who are willing and able to help. Let them.
- Give up the whole perfectionist thing. You are going to have to learn not to sweat the blips. I realize you will want the numbers to be perfect, especially once you get the continuous glucose monitor. They are not going to be perfect even if you are doing everything right. It’s a marathon, not a sprint. Correct, and move on.
- Don’t lose sight of that incredible boy. The boy who houses the broken pancreas is so much more than a series of blood glucose readings. I know you will desperately want to know his numbers. Ask him about his day first.
- There are going to be silver linings. You will always feel incredibly sad that your son has this chronic medical condition; that feeling will never go away. However, you will meet some really wonderful people over the next four years who will make the whole situation more tolerable. That school nurse whose name you don’t know yet is amazing. She’s going to take really good care of your boy. In fact, when he goes back to school next week, you’re going to feel like he’s safer when he’s at school than when he’s with you. Liam’s next school nurse will also be amazing. She’s going to give you a hug even on days when you don’t want to admit that you need one. Liam’s going to make some great friends at t1d camp (Yes, you’re going to let him go to sleep away camp, and he’s going to love it), and you will meet some really incredible people in the t1d community. You’re too freaked out to realize this now, but the endocrinologist who is on call this weekend is terrific. Stick with her.
- Clean out a closet. It’s pretty cute that you think that one shelf in the kitchen cupboard is going to be sufficient for storing all of the t1d supplies. It’s O.K. You won’t be a rookie for long.
Written by Susan Ramsey
Our son Liam was diagnosed with type 1 diabetes when he was seven years old. We knew that it was going to be important for him to remain active, both because of the positive health effects of exercise and because of the empowering effect of pushing himself physically. He was diagnosed on a Saturday morning. He was back to climbing at the rock gym three days later. On that first day back at the gym, I had him test right before he started climbing. His blood glucose level was 150, which is exactly where we wanted him to be before exercise. He started climbing, and I watched him like a hawk. After 10 minutes of climbing, I asked him to test again. His blood glucose level was 50! It was our very first low. I was a complete newbie. I had no idea what was going to happen at 50. I wanted to scoop him up, take him home, and make him sit completely still on the couch. Instead, I fed him glucose tabs and sat with him on the gym floor until his blood glucose level came back up. Then, he got back on the wall. It was a terrible 2 ½ hours. I was a nervous wreck. Liam complained about how much it hurt to climb with the fingers he had been poking for blood glucose tests. It was the first time we truly started to grasp the complexity and difficulty of type 1 diabetes management.
However, we were determined to figure out how to make this happen. It was not acceptable for Liam to believe that his goals in life were limited because the beta cells in his pancreas had stopped functioning. Our smart, capable boy needed to understand that a broken pancreas was not going to alter what he could accomplish.
We stuck with it, and eventually we started figuring it out. We determined that Liam weights his ring fingers less than the other fingers when he climbs. Therefore, we had him start poking only his ring fingers. We figured out that his blood glucose level drops most precipitously when he starts climbing if he has a lot of active insulin on board. As a result, we started feeding him low carb food before climbing. By the time we had figured out how to manage an active kid on shots, we switched to the pump and had to re-learn everything! There have been many, many bumps along the way, but we keep putting one foot in front of the other. That is really the key with type 1 diabetes management. The learning, problem solving, and adaptation never end. There is no finish line. We are never going to land on one right way to manage his type 1 diabetes. Just as we think we have a handle on things, something shifts. He has a growth spurt, illness, more activity, less activity, etc. It’s really hard, but, as we tell Liam, “We can do hard things.” We are going to keep problem solving and adapting, and we are going to keep climbing. That is what we do. We do hard things because we can and we must.
We are certainly not alone in this. There are so many people affected by type 1 diabetes who are doing amazing things while managing this chronic condition. Through Rock Type 1, we hope to shine a light on some of those individuals, and we want to do everything we can to encourage and empower others who might be hesitant to push themselves physically. In the end, it’s all about living life to its very fullest, with or without a functioning pancreas.
Written by Susan Ramsey
Rock Type 1 is delighted to announce the launch of our website www.rocktype1.org and logo! Rock Type 1 is a 501(c)3 non-profit organization dedicated to improving the lives of those with type 1 diabetes through exercise and education.
The Rock Type 1 website contains information about Rock Type 1 and our mission, information regarding future events, and media galleries from past events. Additionally, we will be posting useful information regarding type 1 diabetes and exercise.
We would like to thank Larry Zevon of Zevon Media, LLC for the website design.
Help Rock Type 1 Empower Individuals with Type 1 Diabetes!
Rock Type 1 is a 501(c)3 nonprofit organization dedicated to improving the lives of those with type 1 diabetes through exercise and education. Rock Type 1 is a completely volunteer organization. Your tax deductible donation is very much appreciated!