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.

The Blame Game - Diabetes Blog Week 2017

Blame is such a heavy word, and there is plenty to go around in the diabetes community.
Doctor blame patients for not being in "control." I have not experienced this with my doctor; he is great! But I read almost daily of someone whose doctor or cde has shamed them in some way for their management (or lack thereof, in the healthcare providers mind). Might this be why people give up? Maybe some grace and gentle guidance would be more effective than blame and shame?
Patients blame themselves for "mistakes."  We all make them. How could we not? Our pancreases don't make insulin, so every bite of food we eat must be calculated and matched with insulin. Food labels can be off as much as 20%. Glucose meters can be off as much as 20%. Activity, stress levels, illness, and many other things can affect glucose levels and insulin absorption. We make mistakes. We have to treat ourselves with kindness and grace, and move on.
Parents blame themselves when their child with diabetes has high or low numbers.  Imagine having a young child, perhaps young enough that they don't speak yet. Now imagine that you have to guess how much food that child will eat at EVERY meal and snack. If they don't eat it all, their blood sugar goes low. If they eat more, they need more insulin. It's a constant balancing act. Mistakes happen. Parents need to be kind to themselves as well. 
Parents also tend to blame themselves for passing on the genes that cause the disease. I know my mom even mentioned that when I was diagnosed with type 1 at age 45. I stopped her in her tracks....blame does no good.
Society blames us for our disease. This is a big one. Whether the patient has type 1 or 2, or any other variant, we are NOT to blame for our disease. There are strong genetic factors involved, and the experts don't even fully understand it.
One of the saddest and most infuriating cases of blame are when my fellow type 1 folks throw our type 2 friends under the bus. It's not right, and it's not fair. Like it or not, we are all in this diabetes game together. We must be kind to other. Without kindness and compassion, we start treating each other as less than human.

The Cost of a Chronic Illness - Diabetes Blog Week 2017

Diabetes is an expensive disease. Even with insurance, we pay a substantial among each month in copays. I know many families struggle with the cost of insulin and supplies for 1 person with diabetes. We have 3 in our family. I've learned a few tricks to help us use our healthcare dollars as good as possible.

First, we fill everything on a 90 day cycle. This is about a 50% savings just on our insulin. On our particular insurance plan, when we get 90 day prescriptions for insulin, our test strips, lancets, and pen needles are included at no additional copay. I recently learned from another person on our insurance that alcohol wipes are also covered 100% when filled with the 90 day insulin prescriptions.

Next, our Dexcom sensors are filled every month. We could get them every 90 days and save a few dollars, but monthly works better for us. Storage would quickly become an issue, and that's already a big enough issue in our house. We extend our sensors as long as they are reliable, and that helps with the cost as well.

To me, the emotional costs can be greater than the financial costs. The constant drain of dealing with not only my own numbers and supplies, but also keeping up with my son and husband, can be exhausting. Don't get me wrong, they are both fully self-sufficient. But as wife and mom, I keep tabs. I don't micromanage or anything, but it's still on my mind frequently.

Another emotional aspect is how much I am surrounded by diabetes. At least once a week, it seems, someone messages me with concerns about their own child or the child of a friend. I absolutely would not want any of my friends to stop doing this!! But I do have to recognize the emotional drain it can put on me. I have to step back sometimes in order to keep myself in an ok place emotionally.

The physical cost can't be discounted either. My body is covered in tiny marks and bruises from all the injections I take daily.  I have a device attached to me 24/7. I would not want to be without it, but it does get in the way sometimes. My family has always referred to me as the princess and the pea. I've heard others say they don't even notice their Dexcom on their bodies, but I'm always aware of it. I wear it all the time and monitor myself closely in an effort to avoid the physical cost most of us don't like to thing about....complications. Even with tight management, being free of complications isn't a guarantee. We do the best we can and hope for the best. It's really all we can do.

I've shared this picture before, but it is the best visual of the financial cost of diabetes.

Expect the Unexpected - Diabetes Blog Week 2017

Wow, this is almost the motto in our diabetes life!
Probably the most unexpected thing was my diagnosis at age 45....the 3rd diagnosis in our house in less than 4 years.
In everyday life, we have learned to expect the unexpected. We try to prepare for all possibilities. We go through the checklist before we leave the house....insulin, pen needles, snacks, meter, test strips. We're ready for the highs and lows.
Probably the hardest thing to manage is the fact that our 3 bodies sometimes react very differently to the same foods and situations. We are each learning our bodies and how they respond to different things. It's a life long learning process.
Some of the things that keep it fun with so much diabetes in the house is watching for matching blood sugar numbers on our Dexcoms. This is the closest to triplets we've ever been! Maybe one day I'll get that unexpected surprise!

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.