Friday, May 19, 2017

The Storyteller

DBlog week - Day 5
More than Diabetes- Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with. Share an interest, hobby, passion, something that is YOU. If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!

This is not my story.  For now, I am merely the storyteller.  It is my hope that one day Elise will want to take my place, and continue what I started.  If she doesn't, no big deal.  What I do love, is that she is already following in my footsteps of being a storyteller.

My girl is a published author.

At the age of 9 (she was 8 when she wrote it), Elise published her first book; called The Mouse Who Ate the Moon.  It's a children's story about a hungry mouse and what happens to the moon during a lunar eclipse.

So far, she has done numerous readings at schools and libraries. She has also had one book signing, with two more scheduled.

There is so much more to this girl than diabetes.  She is a big sister.  Soccer player. Voracious reader. Best friend. Daughter. Lover of all things Star Wars and Harry Potter. Singer. Loves to sew. On her way to being trilingual.

And now, published author. In TWO languages (English and Portuguese).

If you're interested, you can buy Elise's book here. If you're local, we have a book signing on June 3rd, at 1:00 pm.  Just leave a comment and I can give you the details.

Love this girl... she inspires me so.

Thursday, May 18, 2017

I am Crazy Slowly Going

DBlog week - Day 4
What brings me down- Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

***I'm phoning it in today, and using my post from 2014. With a few changes.***

I often joke that when I gave birth to my kids, most of my brain must of come out too, because I think I've become dumber with each child I've birthed.

Add diabetes to the mix and it's amazing that I remember to dress myself before I walk out the door.  Mentally, I am exhausted.

Over the past five years, diabetes has become increasingly frustrating.  Elise doesn't follow trends.  She requires very little insulin most days her TDD is about 15 units (she usually eats 50-100g per meal).  She goes through periods where we don't bolus her for meals.  Or only bolus by half.  We've never been able to bolus her fully for her dinner.  We do it manually over a period of five hours.  

And then there are the times she's high no matter how much insulin we dump into her.

Mentally, it's exhausting.  It's like an enigma, wrapped in a paradox, stuck inside a conundrum.

Or something.

I don't really have any sage advice on how to deal.  My method is to rant and rage (to my husband, a friend, my blog, or an empty room).

I play soccer.  Like, a lot of soccer.  Some weeks I have 4 games.  Win or lose, soccer makes me smile, and takes me back to my younger days... when I was actually good at something.

I remember all that I'm thankful for; especially that my daughter is here in my arms. It could be so much worse.

And then I go to Target.  Because Target is always good for all that ails you.

Wednesday, May 17, 2017

Here are my shoes. Take a walk in them

DBlog week - Day 3
The Blame Game- Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgment from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us!

Just recently, I was out for dinner with a friend.  She kept asking me questions about why Fred and I don't go out on date nights. Or why when my mom comes to visit, I don't leave the kids with her and get out of town for a few days with Fred.

If you didn't read my first post for Dblog week, I'll sum it up... Elise's blood sugars are wonky after dinner.  Just plain awful.  They follow no trend, and every night is different.  For example, a few nights ago she had 125g of carbs for dinner.  I started off bolusing her for 40g.  And that's all she needed, for the rest of the night. She stayed right in the low 100s.

Until 3 am, when she was 300+. A full 9 hours after she ate.  And no, it wasn't pizza.

A few nights before that, I bolused her for about 1/3 of her meal, because she was going to a 90 minute soccer practice.  She ended up almost 400.

I had only bolused for 1/3, because the night before that, I bolused for 40g of an 90g meal.  We went to her brother's soccer practice where she sat an played with some kids.  She tanked to 52 and stayed there despite 30g of carbs.

Do you see what I'm dealing with?

If it's extremely difficult for me to deal with (and I've been doing this for close to 9 years), how can I expect someone who has little to no experience to handle it?  The times Fred and I have left her, we spend the entire time texting or on the phone trying to handle it from afar.

When my friend said, "I just hope this isn't an excuse you're using", I wanted to scream.  She didn't say it in a mean way, it just showed me that I can try and explain until I am blue in the face, and they won't get it.

It's exhausting.  It's demoralizing. It makes me angry. I feel stupid, because I. Can't. Fix. It.  I've tried and failed more times than I can count.  Sugar Surfing helps, but not every time. The endo can't even figure it out.  You don't think I want to go on vacation with my husband (and no kids)? Fred and I haven't had quality alone time since before Elise was born.. You don't think that's hard on a marriage?  It sucks. All of it. 

My friends have seen me struggle, and they don't understand.

As far as turning it around... I don't know what I want them to say.  Because they don't get it.  They never will.

This post was written after another hard night.  It's not always this difficult, but lately it has been.  And this post reflects that.

Tuesday, May 16, 2017

The Other Costs of Diabetes

DBlog week - Day 2
The Cost of a Chronic Illness- Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

My friends are  always astounded at just how much it costs to keep Elise alive.  I don't share it with many people, but there are times I get worked up about the cost of insulin, which makes them curious as to how much a vial of insulin costs.

After they goe over their inital shock, they always ask, "WHY?" Which leads to a rant about pharmacutical companies, insurance companies, and how the whole THE WHOLE DAMN SYSTEM IS BROKEN.

At which point, the friend is sorry they ever aksed.

But as broken as it is, my family is lucky to have good health insurance.  It's still not cheap, but we can afford what we need.  Even to so-called "extras" like a CGM.  And we have access to all the latest and greatest technology.

But, as some of you know, my husband and I are not from the U.S.  And some days we dream of moving to another country, just for a new experience.

And, if I'm being completely honest, diabetes gives us (well, me) pause.  Because there are so many "what ifs" when it comes to diabetes.  What is we can't get the supplies we're used to?  And how expensive are the "extras". What if the standard of care is not what we expect? What if it's even harder to get what we need than it is now? 

Because, like water flowing down a hill, I would much rather take the path of least resistance.  Living here is not bad, but it IS known. And therefore, not scary.

The unknown for me? Very scary.

I can't heap all of the blame onto diabetes.  It gets trickier when there are kids involved.  Our older two are in a great school; where they're involved in a wonderful GT program, dual language and STEM. Not to mention we have the BEST school nurse in the world.

So here we stay.  Provided for and comfortable.  Happy, even.  But still curious to what the rest of the world could hold if diabetes was not a part of our world.

I just wanted to add that I get the whole "don't let diabetes stop you from doing anything" thing. I just wanted to be honest about who I am, and how sometimes, diabetes can make it easy for me to say no. I'm getting better... Elise has been to two (!!!) sleepovers in the last few months. I'm doing my best, despite the fear, to not let diabetes rob her of any experiences.  It's a constant battle, friends.

Monday, May 15, 2017

Expecting the Unexpected

DBlog week - Day 1
Diabetes and the Unexpected- Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? 

Elise has always had dinnertime issues.  Even back when she was on shots, dinnertime was difficult.  Her problem is this; give her all her dinnertime insulin in one bolus (no matter what she's eating), and she goes low.  

When she was on shots, as long as we gave her diluted insulin at dinner (u-50), it was fine.  But now that she's on a pump, we have  to just watch her CGM and bolus as needed.  

It's exhausting.

The hardest part is that it's not always the same.  There are rare nights when she needs everything up front.  Sometimes it only takes a few hours.  And sometimes, it can take up to 5 hours to dole out her dinnertime insulin in little micro-boluses.  And if I slip up and get distracted, it can get ugly.

And yes, I have messed with I:C ratios, basals, and extended boluses.  Nothing works.  Except watching.  And bolusing.

We've been doing this as long as Elise has been on the pump.  Unbeknownst to me up until a few years ago, this is actually a thing.  It's called Sugar Surfing.

Dr. Stephen Ponder (a pediatric Endo, and T1) has written a great book about it, and also has a Sugar Surfing talk that he gives.

Reading his book, and going to his talk (twice), has helped me fine-tune my evening sugar surfing.

As an aside, Dr. Ponder is going to be at FFL this year!  Make sure you check him out... his talk is engaging, funny, and full of great tips!  I might even go for a three-peat!

I may not have an answer to why Elise absorbs her food more slowly at dinnertime, but I am thankful that through some (or a lot) of trial and error, I've found something that somewhat works for us.

And that seems to be how you do it with diabetes.  Keep trying stuff until you figure it out.

And learn to expect the unexpected.