Monday, October 13, 2014

Happy Diaversary To Me! Thirty one years with T1

Today on the Columbus Day Holiday off school, October 13, 1983, I grabbed a huge glass of orange juice on my way to the doctor. I was soooo thirsty. Peeing lots too. So headed to the doctor to find out I had Type One Diabetes.

My dad was on a business trip. My mom was awesome on the outside, but inside she was devastated. I know that feeling intimately. I felt it when my daughter was diagnosed. But I remember sitting with her in the doctors office talking and saying how thankful I was that it wasn't some thing more serious. Something life threatening. Cancer.

My week in the hospital was fine. Learned to take shots with oranges. Had syringe water fights with my roommate who had asthma. Asthma is horrible, I would think. Shots are easy compared to not being able to breathe.

My mother also had the bright side in her back pocket, "You eat how everyone should eat! You are so healthy!"

It is true that diabetes sucks. But it isn't the worst thing that could happen. I'm grateful for my mom and her attitude toward diabetes. I'm thankful, I can share that optimistic view with my girl. I am thankful to be completely healthy. Happy. Well.

Sunday, August 24, 2014

CGM in the Cloud & Now On My Watch!

People! It is here! I can see my child's blood sugar all the time!

The Nightscout Project, developed by a group of engineers and hackers with T1 or are parents of kids with Type 1 Diabetes created a way to plug a smartphone into the Dexcom receiver and have it upload to the cloud.

Now I have a website that I can keep up on my desktop, iPad, or phone that virtually mirrors my child's Dexcom readings and will alarm if my daughter is low or high.

I also can upload the info to the Pebble smartwatch, which is what you see on the left.

Now, I don't want you to think this is out of the box easy. I spent a lot of time reading posts on their CGM in the Cloud Facebook page, watched the instruction videos multiple times and spent about a week researching phones, cables and storage containers to carry the "rig."

But, it was easier than I expected. Every time I had a question, I posted on the Facebook group and got an answer, even after midnight.

At first I thought this might be a bit over the top for a teen starting high school. PERFECT for a toddler! But would she want me lurking on her like this, but after talking to her about it, we realized this could be hugely helpful. She is still a growing kid with a brain that is firing at a million times a minute. She is starting high school, in marching band, on the swim team and hardly ever is at home. So this is a win. Plus, she can view her on readings on her phone, which never leaves her hand.

The thought is that I am back up. If I see her numbers climbing sharply around 1:00 pm, I can text her, "Bolus?" to make sure she got insulin for lunch. She can then take care of it before the freight train of highs plague her all afternoon. Forgetting is a big teen problem.

So, here is a screenshot of the website on my ipad.

I'm not going to go into set up, because that is all online at Nightscout and Facebook. But here are the elements of what's needed:

  • Smartphone that can take an OTG cable
  • Specific cables for data transfer
  • Dexcom (extra receiver helpful)
  • Data plan for smartphone (most of us use for about $9/ month and share referral codes that give us $$ credit when someone uses it)
  • Optional Pebble watch, but not necessary.
  • Time

What amazes me is that an engineer and dad like John Costik, one of several founders of the Nightscout Project, made this happen for his own son. He loved the Dexcom, but not having his sons numbers available at a glance was inspiration enough to make what is becoming a very helpful tool for hundreds of T1s or parents of T1s. Six Until Me did a great interview on the process that led to us all having access to this amazing info at our fingertips.

The philosophy behind making it available to all is simply, #WeAreNotWaiting.

#WeAreNotWaiting while our endocrinologist tries to assemble the disjointed pieces of the data puzzle.
#WeAreNotWaiting for competitors to cooperate.
#WeAreNotWaiting for regulators to regulate.
#WeAreNotWaiting for device manufacturers to innovate.
#WeAreNotWaiting for payers to pay.
#WeAreNotWaiting for peace of mind that our children with type 1 diabetes are safe.
#WeAreNotWaiting to get some decent sleep for the first time in years.
#WeAreNotWaiting for our child to be able to safely have a sleepover at friend’s house.
#WeAreNotWaiting to give our child a better chance to succeed at school.
#WeAreNotWaiting for others to decide if, when, and how we access and use data from our own bodies.
#WeAreNotWaiting to build applications that focus on design and usability.
#WeAreNotWaiting to compel device makers to publish their data protocols.
#WeAreNotWaiting to insist that patients have access to their own diabetes data.
#WeAreNotWaiting to allow PWDs to have a choice in how they see their own diabetes data, and not be forced to use substandard software delivered that comes with their device.
#WeAreNotWaiting to make it easier to get data off of devices.
#WeAreNotWaiting to bring together the best and brightest minds from around the world to help make things better for PWDs.
#WeAreNotWaiting for the cure.

Tuesday, August 5, 2014

T1D Diagnosed in my Toddler 10 Years Ago Today

Happy 10 year Dia-versary to my now 13 year-old daughter and Type 2 Dia-versary to my husband.

My daughter was just three when she couldn't stop drinking or peeing and my husband decided to take her blood sugar. It said, "Hi." He didn't believe it, so he took his own. It said, "257." Clearly, the meters were broken.

He tried again with my other meter. Same results. I remember the phone call that drained the blood from my body. The wave of fear that hits like a tsunami. I almost slid under my desk.

My husband asked me when trying to get pregnant what the chances were of having a kid with T1D. I remember that conversation and confidently reporting that it was only a 7 to 10 percent chance according to my endo. Chances are a funny thing.

T1 Traveler...I Had Issues: Part II

We are at the airport in Costa Rica and my blood glucose has been running kinda high all morning. I corrected on the drive (2 1/2 hours), but we also stopped and got snacks. Waiting at the gate for the flight I see the double up arrows and realize I need an infusion set now.

I open my carryon, pull out my supply bag and guess what? No infusion set. I have everything on earth! But no infusion set. So, I quickly decide to go on Lantus. I bolus, give shots for my high BG and everything worked out ok. I still had my CGM connected, so I could monitor the results.

I didn't realize until a few years ago that your dose of Lantus is equal to your total basal rate. Worked pretty well.

So, you can always be prepared, but you also need to be prepared to be flexible!

Monday, July 28, 2014

T1 Traveler...I Had Issues: Part 1

Howdy all! I just got home from Nosara, Costa Rica with my family. It was an amazing trip, but can one ever travel so far from home without incident? Hell, no! One thing I am glad about is that it was me and not my daughter with the problems. I know myself and can judge from the inside what to do next.

So, I was prepared. Really prepared. Tons of supplies and insulin. Blood ketone meter. Lots of back up, so running out of stuff wasn't an issue.

Playa Pelada, Nosara, Costa Rica by Wendy L. Morgan 
My daughter loves to surf. This is partly why we chose our destination. I had to get it all on camera, so I also went out in the surf. We typically checked our BG before going in and typically took an hours worth of basal to carry us over.

One of those days, we had afternoon surf session and I guess I hadn't had much to eat at all that day. Couple corn tortillas and some avocado. It was hot and I wasn't hungry.

 My BG was 130 going into the water, so I didn't bolus any extra as I was worried I'd go low. By the time we got back to our room, I was feeling high and indeed I was about 300 and felt like I had ketones. I had moderate levels and felt pretty crappy for an hour or two. I got my BG down and realized that that was a pretty weird episode. I reviewed my day and wondered if my lack of food and seriously increased activity, along with a hour and a half of no insulin made my ketones spike.

Unfortunately, that wondering didn't stick. Three days later, we had a morning surf session and I did the same things. No bolus for basal. No breakfast. We were also out there longer than I planned.  Two hours later I stood on that beautiful beach wrapped in a towel and felt the ache of ketones spread across my chest, across my shoulders and into my back. I felt nauseous and my body felt sick. It came upon me incredibly fast!

We got back to the room and I began to drink a ton of water. This was hard and it felt very serious. I was in a tiny village in Costa Rica. I checked my BG and it was 250 with 1.2 blood ketones, so I book used. Then 20 minutes later I was 350 and at 1.9.

 I had piled a towel on the table in front of me to lay on because I was afraid to move.  I laid my head down between sips of water. I took a total of 15 units with three different injections, then worried I'd taken too much. I was worried I'd need an IV. I was worried. Period.

I drank and drank and tried to Google (we had wifi in our room) "DKA self care," and got results that indicated I could really be in trouble. That's when I began trying to reach a diabetes educator friend on Facebook messages.

 I typed by desperate plea for guidance and realized I was killing time. As I typed, I think I even wrote that I was waiting for the water and insulin to work and trying not to puke. I needed to be doing something to help myself, so writing to her was it.

She responded promptly! She asked if I had Zofran, the anti-nausea medication, and of course, I did! She suggested I take that to keep from throwing up all the water I'd drunk.

 By the time she responded everything was beginning to work, so I didn't taken the drug, but knowing I was doing everything right was a big relief. I asked her if I should take more insulin, but she said wait two hours and see where I am.

I trended slowly down over the next two hours and my ketones dropped to 0.2. This was great news, but that whole thing scared the holy crap out of me. Ketones from exercise, lack of food and no basal insulin, was new to me.

Most the websites I found during my Google-medical-care-abroad session talked about such basic stuff like don't exercise with high BG or ketones, but nothing described what I had just done to myself.

I ate a big lunch and loaded up for future trips to the water with plenty of food and insulin on board. Lesson learned 30 years into this pain in the ass disease!

Next post, my flight home! Diabetes adventure nĂºmero dos!

Friday, June 20, 2014

New Tool: Sugar Surfing - The Book

I just discovered this book that is set to come out in the near future and thought it might be of interest. It is written by Stephen W, Ponder, MD, who has had diabetes nearly 50 years and is a pediatric endocrinologist north of Austin. I've seen him speak several times and I love his perspective on diabetes care. The project is fully funded, but you all may be interested in picking up a copy. I've learned more than a few helpful things from his Facebook page and blog, The Power Within, and I bet the book will be cool.

One of my favorite tips I learned was when high from a pump occlusion, take your correction plus two hours worth of basal insulin right away, then set your pump at 0% for two hours. It helps you expedite the descent after a high blood sugar and not crash later. It's worked perfectly for me and my daughter.

Here is a link to the Indiegogo site to read more.

Sunday, June 8, 2014

T1 Teen's First Night at Camp with Major Hypoglycemia

I get a frantic text (6 or 7 actually) about 10:00 pm. She is worried about everything. People, roommates, strange environment. We get her to a place where she is calm and says she can go to sleep. Whew! She was 94.

Thirty minutes later, she texts me and is absolutely having a panic attack. She is struggling with her thoughts, worried about her diabetes and about having a seizure, which she has never had, and was worried she'd be low all day the next day. You name it, she was freaking out about it. She then says she is hot and sweating. Shaking. I tell her to get her key and go to the counselor next door. She argues that it is really late and she is probably sleeping, but that only lasted for a minute.

She makes it next door and the counselor welcomes her in. Her CGM says 74 and dropping. I bet she was already in her 40s. She drinks two juices and turns off her pump for 30 minutes. She gets to feeling better. I change the settings on her pump. I'd rather her run a bit high, than low. Dude. She was in a rough place.

She got to feeling much, much better and realized all her thinking was low-thinking. If you have T1, you know what I'm talking about.  If you're a parent of a kid with T1, low-thinking is not pleasant. Your brain isn't working well. You think erratically and things can feel very bad and pretty scary. It sucks.

Anyway, I had her stay with the counselor until she hit 80.

She spends the day tomorrow in the marshes around Galveston. Say an little prayer for safe equipment (pump and CGM)! May the dry bag keep those items and her safe.

Saturday, June 7, 2014

Sending 13 Year-Old T1 Off to Week Away Camp

My girl is a freshman now! Whooo hooo! And the first thing we're doing is pushing her out of the nest. Tons of supplies packed. Two pages tips and notes for counselors and a reminder to her that she controls the destiny for this trip by looking at her CGM every couple hours and acting on the numbers she sees. Wish us luck!

Wednesday, January 22, 2014

Crisis Averted: Flu is not taking us down!

Well, we all got flu shots, but spending an entire weekend with (a non-symptomatic flu carrying) friend in close quarters for four nights and five days, leads to the flu. My daughter, now 13, got a fever yesterday after her BFF got one the night before. Unfortunately, somewhere along the four hours of napping, her pump became disconnected and we didn't realize that until after two corrections for seemingly explainable highs and a bunch of breakfast tacos for dinner.

587 mgdl. Five hundred eighty seven milligrams per deciliter. That was how we found out. Only moderate ketones, but she was feeling sick. I begged her to drink water, but she couldn't. On the phone with doctor, who I haven't called for help since she was 10, she suggested I wait to see if bolus worked and then maybe head to ER. Teenager said she couldn't wait, so away we went.

It wasn't DKA, but it's hard to communicate with ER nurses in a way that doesn't sound condescending. Especially when all you want is a line inserted and saline dripping. It's all she needs and it is the slowest things coming. We had a good experience except for missing her vein and having to try again in her hand. They were good to us, but it just all takes so long. They come to report that her blood sugar is 570 from the blood they drew an hour ago.

Ultimately it took six or seven hours to get get BG down below 300. Her ketones never climbed, which was our reason for coming to the ER. Her fever is still there and she is sleeping with 140 BG and a new CGM sensor on.

I'm so glad we went to the ER. The flu shouldn't have hit her at all, and with T1, it has a whole new level of worry. She mentioned last night one of her T1 buddies from camp was in the hospital with the flu. I hope he is doing well, and am glad he shared his story with my daughter or we may have waited a lot longer to seek help. Humbled by diabetes today.