General blog post

Too Many Variables…Swimming in Mustard

I have my cocky days. My days when I believe that if I can just be smart and prepared enough in managing Liam’s T1D everything will be fine. My “T1D is a manageable hassle” days. Then, I get blindsided by blood sugars that don’t make sense and keep not making sense for days. We had a string of those days on a recent trip to the Midwest. Liam’s blood sugar kept spiking, and it made no sense whatsoever. We ran through the usual culprits.

  1. Is it a bad pump site? We changed his site 5 times over 5 days.
  2. Did the insulin get too cold when we went for a walk in the frigid temperatures? We tried a vial of insulin that had not been exposed to the cold.
  3. Is he sick? He had no symptoms except the general crappy feeling of having high blood sugars. He was also negative for ketones.
  4. Is it the weird food he’s eating? (How many grams of carbohydrate are in a cheese curd?) He had a huge spike after a Greek yogurt, which is the same brand and flavor he eats at home without incident.
  5. Is he growing/having a hormone surge/whatever else happens to an 11-year-old boy? We just had to throw our hands in the air in response to this question.

When Liam was diagnosed, a very wise diabetes educator warned me that sometimes the numbers just wouldn’t make sense. I do research for a living. I thought that I could approach it methodically and force it to make sense.  Our recent trip was a reminder of how humbling this condition can be. For now, I’m very happy to be back to confidence restoring blood sugars and nights that aren’t interrupted by the constant buzzing of the continuous glucose monitor.

 

Written by Susan Ramsey

It’s Not That Bad

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

Things I Wish I Had Known on T1D-Day

 

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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

rock type 1 diabetes

We Can Do Hard Things

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 diabetes

Rock Type 1 Website Launches!

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.