A Grandmother's Story - Chapter 1

My mom wants to share our story from her perspective, so she'll be guest blogging a series for us. She (Nanny) has been there for everything, even giving him his first bath after coming home from the hospital 21 years ago as a newborn (see picture), to staying with him in the hospital at diagnosis almost 5 years ago. I hope you enjoy her story!  

Early Friday morning August 24, 2012:

The phone was ringing.  Our daughter Cassie was calling to tell us that our 16 year old grandson, Seth, had been taken from the ER of the local hospital to Children’s Hospital in Dallas in ICU.

Seth had been diagnosed with Type 1 diabetes.

What should we do?  Come to the hospital?—(I hate Dallas traffic with a passion!)

Her answer was no, not just yet.  Only two people could be in the critical unit and she and Jason wanted to be with him.

We stayed in touch by phone throughout the day.  By late afternoon Seth was becoming stable.  He would remain in ICU for a couple of days and then move to a regular room.

School was to begin on Monday.  Cassie and Jason are both school teachers.

I could not imagine how school teachers could miss the first day of school.  What to do?

The only plan I could think of was to go to the hospital on Sunday so they could go home and prepare for the next day.

Saturday:

I called Cassie to tell her that her dad and I would come to the hospital Sunday and that I would spend the night at the hospital with Seth when he was moved to a regular room.  (I still hate the idea of Dallas traffic!)

Our son, who lives near us, agreed to take us to Dallas Sunday.

…But there was a problem.  In order for me to stay with Seth at the hospital I would have to come to a short “training session” with the nutritionist.

I agreed.

There was much to consider.  We were all aware that something was terribly wrong with Seth.

He was a summer life guard at the local swimming pool and was also a drummer in the high school band.  He was loosing weight and was tired from all the summer activities, especially with band practice in the evenings in this terrific Texas summer heat.

Seth had completed his Boy Scout Eagle project and his award ceremony had been on Sunday afternoon just five short days ago.  Seth was so thin and pale.  Another grandmother and I were shocked to see how bad he looked.  The Eagle ceremony was quite impressive, but all we could think about was how sick Seth was.

His dad called the doctor Monday.  Seth was misdiagnosed with mono.  We have been told that misdiagnosis is quite common and that even very good doctors make this mistake.

Sunday:

The nutritionist at Children’s Hospital was very thorough.  There would be a very strict diet to follow for the first month.  All food and insulin would be monitored and reported until a regimen could be established.

Finally, it was time for Seth to leave ICU and be transferred to a room.

Cassie and Jason left the hospital to make plans for the school day on Monday.

Our son took his dad home.

It was now just Seth and me in a hospital room with nurses and doctors to help us begin this new way of life.

It takes a few minutes to get situated in a hospital room.  Unpack a bag.  Figure out where to put your extra clothes and toothbrush.  Is there any way to make a bed in this room so I can stretch out for the night?

In comes a nurse.  We must select items from a menu for our evening meal.  There’s a list with carb counts and several pages of with menu selections, numbers and boxed to check.  Meat: ok.  Vegetables:  maybe. Fruit: you have to count the grapes and make it add up to the correct numbers.

Seth makes a few choices and I decide to choose from the same menu and add everything up—just for the practice.

In comes another nurse.  In order for me to leave the hospital with Seth tomorrow I must administer the insulin injection.

Are you kidding?  I don’t think I can do that!

However, I certainly did plan to take Seth with me when I left that hospital.  I took the syringe in hand, and with detailed instructions from the nurse, drew up the insulin and stuck that needle into Seth’s arm.

It’s amazing what you can do when you don’t have a choice!

Our meals are ordered, we have settled in the room (kinda), so what next?

My husband and I had toured the hospital and had seen the amazing train collection.  Seth said he felt like getting out of the room now.  I asked a nurse for a wheelchair so that we could go exploring.  The railroad display at Children’s Hospital is certainly a tour worth taking and Seth seemed to enjoy being able to get out of the room for a little while.

Back in the room, we had our supper (counted grapes and all), filled out the proper paper work and attempted to settle down for the night.  The nurses would take care of all the necessary blood checks, insulin injections, etc.  We don’t have to worry about that until tomorrow.

Sleep came restlessly, but did come.  Praise the LORD for a little rest.

First diaversary #3

Today is my 1st diaversary. Even though I knew 12 days earlier that I had t1d, today was the day a doctor confirmed it. This is the third time our family has experienced the first year diaversary.

During the past year, I've still lived a full life. Here's a summary of my activities since this time last year.

Organized d supplies for 3. This has been a challenge! Diabetes supplies take up a ton of space. 

Watched my nephew compete in state DI competition. 

Said goodbye to our last grandparent. We lost Jason's grandma last April. She was the last grandparent between us.

Dad threw surprise birthday party for me and mom. Our birthdays are 1 week apart. My parents are the best! (That's my sweet friend in the pic, not my mom.)

Swim team had their annual swim banquet.

I went to Chicago on a school trip to check out a program with a team of teachers and administrators. Flew for the first time with d, and the first time in quite a few years.

We attended Type One Nation summit, where I met several people I had only known online.

Got used to diet DP. This was a biggie. I wasn't sure I'd be able to adjust, but the thought of drinking water only for the rest of my life was a terrible prospect. 

Ran concession stand at the pool all summer, with the help of our boys. This us our vacation money. 

Helped with summer swim camp.

Created d supply organizers for our bags.

Started playing Pokémon Go.

Met close friend's kiddo at hospital after he was in a car accident. I could get there faster than my friend, as they were flying the kiddo there by helicopter. 

Helped with a benefit volleyball tournament for a sweet friend with cervical cancer.

Got all of our prescriptions synced on a 90 day refill cycle.

Increased my coaching role for the school swim team.

Started year 22 of teaching.

Celebrated Seth's 4th diaversary.

Endless shrimp with the bestie....a tradition.

Met Laura Wilkinson at a coaching clinic.

Celebrated Jason's 4th diaversary.

Went on Christmas cruise with Jason and the boys. I'm still working on a separate post for that. 

Served on 3 committees at school.

Helped coach our girls and boys swim teams to district championships. 

Celebrated 26th anniversary at regional swim meet, with our annual tradition of DQ after the meet.

Girls weekend....annual tradition with childhood friends.

Multiple vehicles woes. At one point during the year, we had one working vehicle for 4 adults trying to get to work/school in 3 different directions. Thankfully, friends and family helped us get where we needed to be!

Life continued. Nothing around me changed. I had to figure out how to fit diabetes management into my life, not life into diabetes. The first year is behind me. It only gets better from here on out! KDA

Prescription refills made easy?

Our pharmacy is about to make my head spin off my body. It's the pharmacy our insurance requires us to use.  Up until now, we haven't had any problems with them. I have all 16 of our prescriptions on the same refill cycle, and I refill them all at the same time. I can even pick the day that is most convenient for me. One trip to the pharmacy every 90 days. The app tells me when they are eligible for refill, and the pharmacy will contact the doctor for renewal when prescriptions expire. Sounds great, right? It was until this cycle. 

Last week, before I was able to order refills, I got a text that my prescription was ready. Um, I didn't order it yet, but ok. One problem...it was at the wrong pharmacy. Hmmmm, the mystery increases. Not a huge problem, though. It's the store closer to our house. We usually use the one closer to work, but I can (hopefully) work that out later. I ordered the rest of the refills on the app, then checked the next day to make sure they had gotten renewals of expired prescriptions from the doctors. Check.

Yesterday, I was finally able to pick up the one I didn't order. I asked how that might have happened, not mad just confused, but they had no idea. Then I remembered one of the prescriptions said it was on hold. I've never had that happen before. They weren't sure about that either, and suggested I call the other store to find out.

I called the store where we normally fill everything this morning. They really couldn't explain why that one prescription was on hold. The only suggestion was that maybe the doctor sent the prescription before insurance would allow the refill. I'm pretty sure the app won't let me order early, but I didn't feel like arguing. I ordered it, and got a text this afternoon that it's ready to pick up. So, we're just waiting on one more that says 'in process.' Hopefully it will be ready tomorrow, and hopefully this whole thing will go more smoothly in 90 days. This is exhausting! 

This is our typical 90-day order. 

Death of a sensor

The topic of sensor life comes up fairly often in various diabetes-related Facebook groups. One question that comes up is how do you know when a sensor is done? Well, today I have no doubt my sensor is completely done. It was fine this morning...only 4 points off from my fingerstick. Within an hour or so, it was telling me I was 53⬇but I knew that wasn't right. I had just eaten breakfast. Fingerstick showed I was 157, which sounds about right considering what I had for breakfast, time, etc. I gave it a little time to straighten up, but after 4 hours it was still wonky (alternating between ??? and far off numbers) so I pulled it. It gave me 3 weeks of great readings and an abrupt ending. Can't complain too much about that! Here's hoping the new one is just as good.

If I'm talking, I'm fine. Right?

So this happened at lunch today.

This morning we had swim practice. I am helping Jason coach a summer technique class, which has been awesome. Jason had to work until noon at the pool, so I just hung out waiting. We actually decided ahead of time what we wanted for lunch, so we injected our insulin ahead of time to minimize the blood sugar spike (called a prebolus). But then a parent wanted to talk to him at the pool before we left. Then traffic was awful and we couldn't get out of the parking lot. We finally made it to the place we had picked for lunch, ordered what we had already decided on, and had a short wait for our food. My Dexcom showed I was slightly headed down, which I expected and was what I wanted. Just as our food arrived, the shakiness started, followed by the sweating. Jason suggested I test, because Dex was indicating I was in the 70s. I shouldn't be feeling low. Test...39. Wow, no wonder my vision was shaky. I realized I was babbling. I tend to do that when I'm nervous. We decided if I'm talking then I must be ok. Right?

Tips and Tricks - 2016 Diabetes Blog Week Day 5

Due to the fact that the school year is almost over and I fell asleep on the couch Thursday night, Friday's post didn't get written as scheduled. Here it is a day late.

Friday's prompt: Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

We've only been dealing with type 1 diabetes in our house for a little under 4 years, but there are some things that I've done to help keep the chaos under at least a little bit of control. Now that there are 3 of us with t1d in the house, it has become even more important. The rest of the house is a mess, but the d supplies are in order.

1) Prescriptions. I think I've finally gotten all of our prescriptions on the same refill cycle. That means just one trip to the pharmacy every 90 days. It took a while to get them all synced up. The CVS app makes it easy to order refills, too.

2) Labels and Sharpies. I label pretty much everything. The Dexcom sensor packages have the initial of the person and the date it was inserted. Plastic organizers contain supplies and snacks, all labeled. Here are a couple of examples.

3) Opsite Flexifix and Skintac. These are essential for keeping Dexcom sensors on for as long as possible. 

4) Portable sharps container. We use old prescription bottles. Works great, secure and compact. 

5) Snacks/low treatments. We have drawers of snacks that are 15-ish grams of carbs or less. I buy packages of crackers and such when the are on sale. Same with candy to use as low treatments. None of us really prefer Skittles, Smarties, and such just to eat so they work well for lows. No temptation just to eat them. I make sure we have a variety of different carb counts , labeled of course, for different situations. 

6) Kitchen "control center." This recycled wine rack holds all of our daily use supplies. Each of us has a spot for our meters and insulin pens. There is a box of each color of pen needle, as well as a box for trash. To the side is a bottle for sharps. 

7) We also have well-stocked bags that I try to double check every Sunday night, adding insulin pens and pen needles, as well as changing the lancets in all meter cases. Juice, a meter, and pen/pen needles live in our bedroom too. Diabetes supplies are everywhere!

8) Insulin. The extra fridge, which was originally purchased when our boys were just entering the teen years, is now pretty much the insulin fridge. It holds the 90 day supply for each of us. The main fridge has the boxes we are currently using.

There ya go! Those are my tips for organizing 3 people with t1d in the same house. Being organized helps us get able to KDA every say.

Read other tips and tricks here.

The Healthcare Experience - 2016 Diabetes Blog Week Day 4

Day 4 prompt: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

I'm actually pretty happy with my current doctor. He is kind, compassionate, and knowledgeable. I've only had one visit with him, but my husband has been going to him for several years. 

Our insurance through our employer is very expensive  (isn't everyone's?) but the coverage is pretty decent. We haven't yet had to fight for anything we need. We haven't started exploring pumps yet, but I don't think we'll have issues there either.

My biggest issue has been with misdiagnosis. Jason was initially misdiagnosed as type 2 and spent several years frustrated and defeated. Seth was initially diagnosed with a mono-like virus and ended up in ICU in DKA. And even though I was armed with specific information, I was initially misdiagnosed by the clinic PA. He was condescending and closed-minded. I presented him with data (sudden onset of symptoms, blood sugar levels, rapid weight loss, etc) and he dismissed it all. He told me flat out there is no way I have type 1. At my age, it can only be type 2. "You would have known before now." I vowed when I heard those words that I would a) not listen to anything else he said, and b) never see him again. I endured the rest of the visit as best I could. Jason is a healthcare professional, and noted several things this guy did wrong, including the way he listened to my heart and lungs. He was unprofessional and lazy in his exam. He wrote me off as a fat, lazy type 2. Please know that is not at all how I feel about people with type 2; that was the vibe he was giving off. He gave me no guidance on diet or exercise, simply said, "Take this pill and come back in a month." I was livid! If this is how people with type 2 are treated by the medical professionals, then no wonder there is such a problem!  I felt dehumanized and worthless, and I knew he was wrong. How awful must it be for people with type 2 that encounter this type of "professional." My heart just aches for them. I deserved better, and I got it. They deserve better, and I'm so afraid many don't get what they truly need. Compassion, kindness, knowledge, and empowerment. Those are the things that people with all types of diabetes need in order to KDA.

To read how others are responding to this prompt, click here. 

Language and Diabetes - 2016 Diabetes Blog Week Day 3

Today's prompt: There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

I've written about the "second language" of diabetes before. We speak in lots of acronyms and phrases that have a totally different meaning outside of the diabetes world. It really is like learning a whole new vocabulary, and it takes a while to get the hang of it all.

There are also words that are very polarizing. For me personally, using the word "diabetic" is not a problem. It's an adjective, a descriptor. It doesn't explain my whole being any more than teacher, mom, wife, brown-eyed, aging, etc. It's one adjective. At the same time, I try to be respectful of those who are sensitive and view it as a label rather than an adjective. They absolutely have as much right to their opinion as I do to mine. 

In our house, we use check and test pretty equally. I understand why some choose not to say test, and if I had a small child with diabetes I'd likely make that choice as well. 

There are probably many other examples, but none of them are hot buttons for me. The real hot button for me is when people use diabetes as the butt of the joke, blaming people for their diabetes. Those people tend to justify it, saying it's about type 2. That just perpetuates more myths and does harm to the diabetes community as a whole. Now, do we joke about diabetes in our house? All the time. But it's among ourselves, and not in a blaming/shaming way. It helps us cope with our disease so that we can continue to KDA.

To read what others have to say, click here. 

The Other Half of Diabetes - 2016 Diabetes Blog Week Day 2

Today's prompt: We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

Wow, where do I even start? The emotional and mental wear and tear of dealing with diabetes is intense. It is always there, always demanding attention. 

For me, dealing with it as the parent of a child with diabetes is the most difficult. Even though he was diagnosed as a teen, I still worried. Worried about his current health (is he low/high, real people sick), worried about his future (complications, jobs, insurance, relationships), worried he wouldn't wake up. The first year was the most difficult dealing with those fears, because we don't let fear rule our lives. I had to deal with it, learn to push it aside, learn not to let it control me. It wasn't easy!

Dealing with diabetes as a spouse is difficult as well. I worry about him too! We've been married 25 years. We work together, including commuting. Our lives are completely intertwined. I want it to continue for a very long time. Again, I have to deal with the issue of fear so it doesn't rule our life. 

Dealing with it in myself is honestly the easiest of the three. Not that it's easy by any means, but I don't have the same battle against fear. Yes, I have some worries about future complications, but it's easier to push those aside for myself for some reason. Maybe I'm still in some bit of denial. I don't know. I guess time will tell about that. There's so much more going on in my head, but I'm a little bit afraid the dam may burst if I go there. Maybe later, a little bit at a time.

Another mental/emotional aspect is All. The. Numbers. Our lives revolve, in many ways, around numbers. Blood sugar, carbs, insulin, insulin to carb ratios, amount of exercise,  time left until bedtime. We all have access to each other's Dexcom data through Nightscout. It helps us stay on track. We're an extra set of eyes and ears for each other. It can be draining, but I wouldn't have it any other way! If one of us needs a data break, who better than your t1 family member to keep an eye out for you? And sometimes, I happen to catch really cool patterns in our numbers. Lots of instance where 2 of us have the same blood sugar at the same time (twins), and sequences. I haven't caught us all at the same number yet, but it will be really cool when I do. We definitely work together as a team to help each other KDA!

Cool sequence I happened to catch

Message Monday - 2016 Diabetes Blog Week Day 1

I haven't written much lately. Life with 3 type 1 diabetics in the house can be a little overwhelming. I'm hoping that writing for Diabetes Blog Week will get me back in the swing of writing. I have lots to say about my diagnosis!

Today's prompt is:What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

I think my most important message I have is that it can happen to anyone. You really never know. When my younger son was diagnosed in August of 2012 at the age of 16, I never dreamed that my husband would be diagnosed 4 months later. After that, I had the occasional thought of my older son being diagnosed, but didn't dwell on it much. Much to my surprise, I was diagnosed in March of this year. Blindsided? Absolutely. 

While I know the mechanics of taking care of diabetes  (testing, injecting, carb counting, etc) being able to do so in my own body is a new kind of adjustment for me. It's been an adjustment for my husband, my kids, and my parents as well.  I think we're all dealing pretty well, and I'm learning how my body responds to the many variables that affect blood sugar. I will absolutely KDA.