Tuesday, August 12, 2014

Rainbows and Unicorns: Behind the Fluff

Rainbows and Unicorns: the most common response to many diabetes-related questions.

 But there is so much more beyond the fluff and the clouds. 

Actually, life with T1D is crazy:

It's a fact. 

Life with Type One Diabetes multiplied by three is that much more crazy!

It hit me this past week that I really haven't had Type One all that long. Our family hasn't known Type One all that long . . .  we haven't even reached five years with T1. We haven't had an opportunity to really settle down into a "new normal." Every time we were close to "taking a breather," it seemed like another child was diagnosed.  

The emotions and pressures of diabetes can act just like our blood sugars . . .  One minute we will feel on top of the world (because sugars are somewhat under control), and within a mere 24 hours it can flip to the opposite extreme. Not only does this happen to one of us, but it seems more of a domino affect in which all of us take a simultaneous nose dive.

The best part is when people can see we are struggling, they love to add their much needed advice. 

"At least you all have the same disease so it's easier to manage!"
I get that input much too frequently. I don't know if this mentality helps people feel better about our situation, or if it is just the same perspective that says we "get used to needles, and they don't hurt".

Either way, I have found that people will be people. Their curiosity and self-confidence drive them to speak things they really don't mean. And often we are left in a sticky wicket in which the "Rainbows and Unicorns" reply fits best. 

Sure I would love to stop and explain how crazy numbers are, how many nights we are up with one of us three, how long 4 years of diabetes seems, and how big of a journey is ahead of us. But that is really not their problem. 

I don't think many people could handle knowing how difficult some days are! This is a challenge that is God-given. A daily battle that we have to fight. 

So between you and me, diabetes isn't all rainbows and unicorns, but we all are adjusting - doing our best. And (thanks to Frederick Banting) we are all living too! ;)

Tuesday, July 29, 2014

T1Trio Outreach

This past month has provided awesome speaking opportunities for the Type One Trio! Though we couldn't get all three of us together, we were able to participate in separate events!

The first of these entailed Hannah, Daniel, and Dad flying out to Minneapolis, MI. They are part of a study group that gathers information on contrasting views of a T1D patient and their health care provider. Out of 40 people in the group, it was pretty cool to see them chosen for this trip. Although I wasn't able to attend, I was told that the trip was a great success! 

(Not to mention getting to fly, staying in a crazy big hotel, and sight-seeing in Minneapolis was a big bonus!)

(Sorry this is the only one I have)

On July 18th, I was able to attend Camp Endeavor in Madison, WI. It is a diabetic day camp for  newly-diagnosed families. I was part of a six member panel that would answer questions, whether preset or brought up by those attending. It was an absolutely incredible time, and getting to meet newly-diagnosed families was pretty awesome. Though I myself am rather new to T1D, I found that being able to share my humor and our family's story was very helpful for some overwhelmed families. It was truly inspiring to see these new families doing so well! The beginning is definitely the hardest.

As for the lack of posts this summer, I apologize! It's been hard to even get to my laptop with the hectic craziness of work and activity! I have found that college is more conducive to blogging than summer! ;) I will try to post more here in the upcoming weeks!

Sunday, July 13, 2014

So Much More

Before our family lived with Type One Diabetes, 

We didn't have to bleed our fingers,
We didn't have to give insulin, 
We didn't need to wear an insulin pump,
We didn't have to stick ourselves with a needle every three days,
We didn't have to worry about a bad site,
We didn't have to worry about hitting capillaries,
We didn't have to experience a low blood sugar,
We didn't have to feel the sting of insulin, 
We didn't have to carry sugar,
We didn't have to inform those around us about glucagon,
We didn't have to give the glucagon,
We didn't have to monitor our blood sugars, 
We didn't have to track blood sugar trends, 
We didn't have to worry about our bodies rejecting ports,
We didn't have to understand hypoglycemia,
We didn't have to understnad hyperglycemia,
We didn't have to test for ketones,
We didn't have to worry about DKA
We didn't have to draw blood every 3 months,
We didn't have to order supplies,
We didn't have to carry bags of supplies, 
We didn't have to give shots in the middle of the night,
We didn't have to worry about insulin-resistance,
We didn't have to worry about sugar in our urine,
We didn't have to consider long-term complications,
We didn't have to count carbs,
We didn't have to worry about bad A1Cs,
We didn't have to worry about hurting our pump,
We didn't have to change our infusion sites,
We didn't have to eat sugar at 2 A.M.,
We didn't have to constantly use needles,
We didn't have to change out lancets,
We didn't have to think like a pancreas, 
We didn't have scars on our fingers,
We didn't have to constantly explain our disease,
We didn't have to worry about night time lows,
We didn't have to worry about running out of insulin,
We didn't have to worry about insulin spoiling,
We didn't have to worry about not waking up,

We didn't have to depend on insulin for life.

With T1D, there is no easy path- no quick way out- no alternate route. It is not a cured disease that is easily managed . . . it is so much more.

*Inspired by "Before I Was Diagnosed," by Ellie Huckle

Monday, June 30, 2014

Learning to Limit

Sometimes Type One can be very overwhelming. I know this as a fact both in our life with diabetes, and many other T1Ds that I've communicated with.

This put me to thinking . . . What are some ways one can limit their diabetes?

First, let me establish an important point. Limiting one's diabetes has nothing to do with diabetic care. When we quit using insulin or we neglect to monitor our blood sugars- it a simple fact: we (any Type One Diabetic) will die. T1Ds are not insulin-resistant, but insulin-dependent. It makes a big difference.

Okay, so now for my "limiting diabetes, live-life somewhat normal" idea.

The first step to limiting the diabetic overload: "Do what you love".

For me, this is running. I know that sounds simple, but it ends up being rather complicated. When I go for a simple four mile run it entails 4 blood sugar tests, eating an average of 12 glucose tabs throughout the run, suspending my pump, and closely monitoring my blood sugars for the rest of the day. I love running! It helps me think, helps relieve stress, and helps me feel normal. Though it takes a lot of extra management, it's worth the effort. 

Second step to limiting the diabetic overload: "Take it one day at a time"

When you look ahead of today, you will be overloaded by the enormity of the disease. It's lifelong, difficult, and painful- both mentally and physically. Learning to take diabetes one day at a time will prove to help in "stress-management". All you have to get through- is today.

Third step to limiting the diabetic overload: "Never stop Hoping"

This past week I have heard a good bit about new advances in endocrinological research. Some people see the new bionic/artificial-pancreas as functional within three years, however, other researchers see that as a full lifetime before it can truly be realistic. Frankly, I have no idea who to believe. Whether it is a cure- or a bionic pancreas, one thing I do know is that miracles do happen, God is in control, and that nothing is impossible. 

Sure, some researchers say such feats of science are impossible- but so did the critics of Frederick Banting . . . 

and he discovered insulin.

Friday, June 20, 2014

It isn't skin deep

Many people view Type One as a disease that has already been cured. 

This is an unfortunate mishap that we have encountered, and now live with. I would like to believe it is in my imagination, but the "mishap" was told to me by a pediatrician.

A major part of Type One that people often miss is that there is more than what we see on the surface.

Type One isn't skin-deep. It's not something you "get over" and it's not something that "goes away."

There is no simple fix.

T1D isn't just blood testing, shots, new sites, fresh insulin . . . those are obviously a vital part of "being a pancreas," but diabetes management far surpasses these externals. 

There is a emotional side and a mental side: continual stress that never ends.

Every day living with Type One is full of repetitive tweaking and adjusting insulin dosages, rollercoastering blood sugar levels, and adapting to the physical affects of bad blood sugars.

There is a constant dread of a low blood sugar during the night, a high blood sugar when taking a test in college, a low or high blood sugar while driving a car, constant ketones that threaten to hospitalize, bad sites that skyrocket blood sugars, warm insulin from being in the sun - the list goes on and on . . .

My point is: Type One isn't cured. Insulin is an incredible tool, just like
a meter or pump - but it can't end here. 

One day I hope to be able to say the same thing as 3,000,000 other T1Ds,

"I had Type One Diabetes."

Monday, June 16, 2014

A Daily Choice

Type One takes away from you . . .  it is natural. 

Type One would like to consume our hopes, ambitions, plans, future, happiness... the list is endless. 

Every day is a choice.

Every time we bleed a finger, insert a port, give a shot, or correct a high or low - we are in a place of decision.
Every time we are discouraged, hurting, overwhelmed, or emotionally spent - we are in a place of decision. 
Yet, Type One can be both positive or negative.

Type One can provide the fuel to help others - to reach out. It provides the purpose to meet other incredible humans who battle the same disease every day!

What I mean by "fuel" is to give energy and motivation to do more! It can either fuel one to reach out, or prevent them from taking those steps to go forward. Diabetes is the fuel that can make one stronger or weaker. It is fuel that can provide empathy towards other hurting people, or sometimes hurt you.
The choice is simple, yet complex;
daily, yet lifelong.
The choice. . . is yours.  
 A bit of inspiration ;)

Monday, June 9, 2014

The Gift of Today

So here is my first guest post! How fitting that it be written by the one who never stops giving to the Type One Trio. My mom is truly amazing! I hope you enjoy her post as much as I have! :)

Four years ago, if someone would have told me I would be writing about type one diabetes- I would have laughed.  That I would be writing about my 3 type one children would have been shockingly unbelievable. 

And yet here I am…here we are.

I am the mother of 5 precious children; four boys, and a girl at the end. 
Our three youngest were diagnosed with type one in three years.  More of my children have it, than don’t.  A statistic that is still overwhelming.

This is a “club” that no one wants to join,

A road no one would choose to go down,

A new normal that never goes away and is constantly changing.

So how do we do it?

We do today.

This is our life now.  It is our story.  Most importantly it is God’s story.

As a mother, I want to protect my children from pain. To shield them from the weight of life… at least until they are older. To fix what is wrong.

Diabetes has shifted my thinking.  I can no longer protect them from pain- it is now a constant companion. 

I can’t delete diabetes from their lives - it is here to stay.

I can’t make this road an easy one - because it stinks.

How do we do today, you may ask.

One step at a time- One finger poke at a time- One blood sugar reading-  One treatment of lows or highs . . .

One day at a time.  One hour at a time.  Sometimes, even one minute at a time.

There is only enough grace for the next step.  If we shine the light to the future, we would all crumble. 

It is too big.

We show love minute by minute. 

You see- love bridges.

It carries the one that is down.

It changes our perspective.

It laughs at things that used to cause us fear.

It believes in a higher purpose.

It is thankful that you have a child that is living, even with a chronic life long disease.

Love is seeing purpose even when surrounded by pain.

It is reminding us that God is good.  Even when He chooses things we don’t understand.

Today is a gift.  One to cherish and be thankful for- no matter what the circumstances. 

That is how we do today.

We take the next step.

And we don’t look back.