General blog post

Weekend of Outdoor Climbing for Families Affected by Type 1 Diabetes

Our annual weekend of outdoor climbing  in Rumney, NH will take place July 27-28, 2019. The whole family is invited to participate.  We hike in to the climbing area as a group. Some parents choose to climb; others don’t. Most of the approaches to the climbing areas are 20-30 minutes. The terrain is somewhat steep and requires some degree of fitness, similar to that required of climbing several flights of stairs. Most people are fine doing the approaches in sneakers. The climbs at Rumney start at the very beginner level. No climbing experience is required. We have reserved a couple of large camp sites for the group at a campground that is a short drive from the climbing area, but there are hotels in the area if you would prefer not to camp. Rock Type 1 is covering the cost of the group camp sites. We are able to provide climbing equipment (harnesses, shoes, and helmets) for everyone who wants to climb so that no one has to buy or rent equipment. We will have experienced volunteers to belay everyone and keep everyone safe. Families usually arrive Friday evening, with climbing from Saturday morning through Sunday afternoon (weather permitting). However, some families choose to join us for either Saturday or Sunday only. We are completely flexible. Please contact us at rocktype1diabetes@gmail.com if you might be interested in joining us or would like more information about the event. For safety reasons, we keep this event very small. Please contact us soon if you are interested.

Rock Climbing Event, June 1, 2019, Scarborough, ME

DUE TO AN OVERWHELMING RESPONSE TO THIS EVENT, WE HAVE REACHED CAPACITY AND HAVE CLOSED REGISTRATION. IF YOU WOULD LIKE TO BE PUT ON A WAIT LIST, PLEASE EMAIL US AT ROCKTYPE1DIABETES@GMAIL.COM.

We are very excited to announce our first Rock Type 1 event in Maine, scheduled for June 1st, 2-5 pm at Salt Pump Climbing Co, 36 Haigis Parkway, Scarborough, ME. This indoor rock climbing event is free for kids and teens with type 1 diabetes and their siblings. This is a great chance to climb and connect with others affected by t1d. Space for this event is limited. Please register soon if you plan to join us. We hope to see you on June 1st!

 

Climb with Pro Skier Lauren Salko

Climb with Pro Skier Lauren Salko, March 23, 2019

We are very excited to partner with Tandem Diabetes Care to bring you two (yes, TWO!) Climb with Pro Skier Lauren Salko events on March 23, 2019. This is your chance to meet and climb with Lauren Salko, who competes in freestyle skiing competitions all around the world. Lauren will share her experiences of managing type 1 diabetes while competing as a professional athlete. These events are free for kids (ages 6 and up) and teens with type 1 diabetes and their siblings. Space is limited. Please register soon if you plan to join us and specify which event you plan to attend (Rock Climb Fairfield in Fairfield, CT, 11 am- 1 pm or Central Rock Gym, Glastonbury, CT, 5 pm-7 pm). 

Rock Climbing Event, April 6, 2019, Warwick, RI

WE HAVE REACHED CAPACITY FOR THIS EVENT AND HAVE CLOSED PARTICIPANT REGISTRATION. WE STILL HAVE SPOTS AVAILABLE FOR OUR EVENTS IN CT ON 3/23.

We will be hosting an indoor rock climbing event, 2-5 pm on April 6, 2019, Central Rock Gym, Warwick, RI. Brandon Denson is going to be our very special guest at the event. Brandon is an American Ninja Warrior and is Outreach Manager for JDRF New England. This is a great chance to climb with an American Ninja Warrior and hear about all of the great things that JDRF is doing. It’s going to be an awesome afternoon of climbing and connecting with other families affected by type 1 diabetes. Please register if you plan to attend. As with all our events, this event is free for kids and teens with type 1 diabetes and their siblings. We hope to see you there!

Climbing Mount Rainier: Insulin for Everyone

Hi! I’m Liam Scott. I was diagnosed with type 1 diabetes when I was 7. I am aware how lucky I have been to have access to the supplies I need to keep myself healthy. There are so many people who have limited or no access to the insulin and glucose testing supplies that they need just to survive, especially in the developing world. My family and I are climbing Mount Rainier and are hoping to use our climb to raise awareness and funds for the work that Insulin for Life-USA is doing. They provide insulin and other supplies to the developing world and emergency supplies to areas affected by natural disasters in the U.S. and around the world. They are saving the lives of people with type 1 diabetes every single day. My goal is to raise $10,000. Please donate here if you can. They also accept donations of insulin and supplies. To find out how to donate these items, please visit their website. To date, I have raised $2000 and, with the help of Camp Surefire and participants at our events, I have shipped over $10,000 in supplies to Insulin for Life-USA. Contributions are tax deductible. Thank you to everyone who has supported Insulin for Life-USA and their life-saving mission!

Is Everyone Else Healthy?

I spent Friday night in an emergency department with my daughter so that she could be evaluated after taking nasty fall during a climbing competition. (She’s going to be fine. She just needs to let a neck sprain and mild concussion heal.) When the resident who was taking Grace’s medical history asked about family history of medical conditions, I told her that Grace’s brother has type 1 diabetes (t1d). Her next question was, “Is everyone else healthy?” My response: “Yes, and so is he.” I know. It was a complete overreaction to an innocuous question. In my exhausted, worried state, the question just triggered something.

From the time Liam was diagnosed at the age of 7, he told us that we could not refer to his t1d as an illness or a disease. We landed on the term “medical condition” in our house. The reality is that Liam is a strong, healthy kid who also carries a significant vulnerability. He’s not sick, AND he requires special protections. He has to be allowed to eat on the school bus if his blood sugar is low. He needs to be able to take a math test at another time if his blood sugar is too high or too low for him to be able to concentrate.

This plays out on the larger stage as well. People with t1d do amazing things. They serve on the Supreme Court. They climb Everest. They race Indy cars. The messages of empowerment conveyed by these feats are so important to those living with t1d. However, sometimes t1d results in terrible complications, and sometimes it kills. Conveying both equally important sides of the coin can be tricky. People with t1d accomplish incredible things, AND please please please fund research to cure this terrible medical condition so that it doesn’t take any more lives.

Written by Susan Ramsey

A Common Language

At our most recent climbing event for families affected by type 1 diabetes, we were laughing about how both t1d and climbing have their own language. When we’re out in public and ask Liam if he’s high, we sometimes get curious looks from strangers. Climbing is the same way, with smearing, dynoing, and belaying.

This conversation made me stop and think about how refreshing it can be to spend time with people who share my language. That’s not to say that I mind explaining t1d to people. I’m flattered when people care enough about Liam and our family to want to know more about his medical condition. It’s just that it’s REALLY hard to explain because it is SO complicated. I often find myself saying things like, “…and that works most of the time but sometimes it just doesn’t.”

I like spending time with parents who I know are in the trenches with us. Parents who know what it’s like to look at a meter reading and be totally caught off guard when your child is low or high for no apparent reason. Parents who understand the anxiety and the fear. Parents who share the sleepless nights. Parents who would do anything to take this burden away from our kids. Parents who share a common desire to give our kids lives without limits while keeping them safe.

By Susan Ramsey

Beta Cell Survivor Guilt

Earlier this week, I had the great privilege of attending the MasterLab workshop in diabetes advocacy. A great big thank you to Diabetes Advocates, a component of the Diabetes Hands Foundation, for hosting an inspiring and informative panel of speakers for the day.

Dr. Mark Heyman (who has a website that is definitely worth exploring) presented one of the talks that really resonated with me as a t1d parent. The talk centered on the importance of taking care of oneself. The take home message is that if we don’t take care of ourselves, we won’t have anything to offer others. I think a lot of parents and other caregivers find this challenging. There are a multitude of logistical and other issues that can get in the way of finding time for ourselves. It can become even more complicated when one is caring for a child with a chronic medical condition such as t1d.

Since my son’s diagnosis almost 6 years ago, I’ve gotten better about taking care of myself. The logistics of doing that have gotten somewhat easier as he has become more independent in his t1d management. I also have become more aware of the impact of caregiver burnout on my interactions with other humans. I can be a much more positive influence when I’m taking care of myself.

The other thing that I have realized over the years is that a key part of taking care of myself is being able to check out sometimes. I need to not feel like I have to respond to the needs of others for some period of time. It doesn’t necessarily have to be for a long period of time, and it doesn’t need to happen every day. However, it does need to happen occasionally if I stand any chance of being remotely patient with the rest of the world.

Here’s the kicker. When I check out, I have the luxury of not having to think about t1d. My fully functioning pancreas allows me to eat without estimating the carb count of the food on the plate in front of me. I don’t need to think about my current blood sugar, whether a basal rate needs to be adjusted because of exercise, or whether an insulin pump site is working well. Until there is a cure (please, please, please, let there be a cure), my son will never have that luxury. He and roughly 1.25 million other Americans living with t1d have to be constantly on guard in order to keep themselves safe. I do not want to minimize the technological advances that make management easier. Things have improved immensely in the relatively short time since Liam’s diagnosis. However, even when a closed loop system goes to market, some level of vigilance will continue to be required. Sites will still fail occasionally. The bottom line is that there is no break for those with t1d.

I know it makes no sense, but I feel incredibly guilty when I don’t have to think about t1d. Liam doesn’t begrudge me my fully functioning pancreas. It doesn’t make his load lighter when I feel guilty. However, it does improve his life significantly when his mom is more pleasant, which requires that I be able to check out occasionally. I am grateful to have been reminded of how critical it is to take time to recharge my batteries, for the sake of everyone in my life.

Written by Susan Ramsey

TMI

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 worst diabetes day. Ever.

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.

Lessons learned:

  1. Liam’s lows are not always going to have the grumpy, sluggish, spacey presentation.
  2. Adolescent blood sugars appear to be as labile as adolescent emotions.
  3. After 5 years, we have learned so much yet know so little about how to be a pancreas.

Written by Susan Ramsey