Tuesday, July 19, 2011

Feeling frustrated

"I cried unto God with my voice,
even unto God with my voice;
and he gave ear unto me.
In the day of my trouble I sought the Lord...
I complained,
and my spirit was overwhelmed.....

It can be very comforting to know that the frustrations you feel are not unique to you.
It's days like these that I find strength and a different perspective on my daily challenges in reading the Psalms.
I also find myself remembering those stories of folks who are suffering through things WAAAAAY beyond what I experience every day.

Yesterday was one of those days......
It was Ashlyn's quarterly visit with the endocrinologist.
I suppose some people find doctor check-ups annoying and inconvenient, but I appreciate the regular life-line it gives us for advice and information.
I also like to hear that she's growing and we're managing things just fine in the midst of everything else.
Yesterday was not one of those visits.
I went hoping to find some solid answers and good resolutions to why Ashlyn's blood sugar numbers have been so difficult to control lately.
Literally, it feels like we're playing a game of cat and mouse.
Super high blood sugar number.
Medicate with lots of insulin.
Check later......better, but still high.
Now she's low.
Oops....back high again.
More insulin.
Adjust Lantus.
High when she wakes up.
High at lunch.
Low in the afternoon.

I mentioned to the doctor yesterday, that it was like we're chasing highs all day.
His basic response was..."Welcome to my world."
We talked about all the usual stuff......puberty {which he said she hasn't hit yet}, diet {which I've beat myself over the head trying to figure out for all 8 of us within an extremely narrow food budget these days},  using the insulin pen correctly, staying on a schedule, the lack luster cons of a continuous glucose monitoring system {i.e. the Dexcom 7}.
I told him about the incident at camp this week.

For all intents and purposes, he looked me square in the face and told me I was negligent for letting her go to a camp where the camp nurse is really only prepared to be putting on band-aids all day.
"Unless it's a camp that's certified in handing Type 1 Diabetes, these nurses aren't trained to know when to scale back on their doses, and to do extra checks during the night if they have been low, and to monitor their food/carb intake, and how to deal with emergencies, and where to give the glucagon shots if necessary."

He didn't really say it all that horribly, but believe me, that's the impact I felt as I listened to him.
He really brought it home for me that what happened could have gone horribly wrong and ended up much worse than it did.

He finally sent in a diabetes educator to us to communicate that we would be continuing through the process of pursuing the Dexcom CGM {continuous glucose monitoring system}.
Then we sat with the nutritionist to help us figure out how many carbs Ashlyn should be eating at each meal.
Because we're not ready to switch our entire lives over to the insulin pump and get her all wired up and basically shackled to this little device, we're going back to the old-school.
Using ratios while sticking with a set number of carbs per meal and limited carbs for in between snacks.

"......I am so troubled that I cannot speak...."

Yet another wake-up call to the reality of what this disease is and how confining it can be.
To look at her you would never know.
That's what is so frustrating!!
She looks and acts like every other beautiful, healthy, vivacious, fun-loving 11 year old.....
but there's a monster lurking inside her.
One that can cause the cold fingers of anxiety to crawl up my spine and take a strangle hold of my throat.
Faced it yet again yesterday.

"Hath God forgotten to be gracious?
hath he in anger shut up his tender mercies?

But I'm forced to look around me and remember that so many have so much more to struggle with.
As we walk down the hallway to the elevator, we pass a little boy in a wheelchair.  
He is sitting straight up with a halo device screwed into his scalp and held suspended by wires to a frame above his head.
I can't imagine the anxiety and stress his parents feel every day.
He was sitting at a video game in the waiting room of the urology clinic.
When we exit the elevator where we descended from the 4th floor, more children in wheelchairs.
A young man who had obviously had some kind of head injury wearing a helmet, laying his head on the shoulder of his mother {I'm assuming}.

"And I said, This is my infirmity:
I will remember the years of the right hand of the most High.

I will remember the works of the Lord.
surely I will remember thy wonders of old.
I will meditate also of all thy work,
and talk of thy doings.

Thy way, O God, is in the sanctuary:
who is so great a God as our God?"
Psalm 77

Going to be taking some time today to just write down God's gifst to me recently.
I need to refocus not on what I DON'T have, but all that I do have.
And all the ways that God reveals Himself to me and shows me that He is right here....with me....through it all.

#122.  God's protection of Ashlyn while at camp
123. All funds raised for 3 children to attend camp!!
124.  Funny camp memories
125.  Access to glorious pool on sweltering summer afternoons
126.  Friends to swim with us
127.  Yet more VBS fun
128.  Cool fans on sultry, hot July evenings
130.  Early morning walks and ability to listen to scriptures at the same time

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