Saturday, November 5, 2016

National Diabetes Awareness Month: The Frustrations and Fears (of the Diagnosis)


**Continuing to repost some journal entries from back in 2009 when our daughter was diagnosed with Type 1 Diabetes.***


This last week has been one of the most troubling since
Ashlyn's diagnosis in February. [originally written in the summer of 2009}



One of the things that I knew was going to be so difficult for our family
was keeping track of all the stuff you need to care for someone
with Type 1 Diabetes.
So when we got home from the hospital, one of the first things that I did, was find a container for all the extra supplies we would want to keep on hand, as well, as something nice, for the things we would be using every day.
I call them the "Extra" supplies and the "Working" supplies.
I also put together a bag of supplies and things we needed to take every time we go out
the door in case of emergencies. In that bag, as well as the "working supplies" basket we have a glucose meter. I was so thankful that we were given two meters, because it is so much easier not to have to remember to grab the meter from the kitchen when we're trying to run out the door.
Well, the week before this last one, we lost our kitchen meter.
We've begun to slip a little in our routine somewhat, 

so the meter doesn't always get put back
into the basket as soon as we're done with it, like we used to do at first.


So we tear the house apart looking for it, and I'm getting more frantic as time goes on.
We have another one, so it's not an emergency, but I was frustrated that we would be down to one meter,

 and the one we lost had a couple important things with it that I really didn't
want to lose or have to replace.
Besides, a meter isn't teeny tiny so I couldn't figure out how we could lose something
like that.
We did eventually find it under the couch (which I had shoved back in an effort
to find it, but it was stuck to the corner leg so it didn't come out from under the first time we looked), and that was a relief to me.
THEN, on Father's Day, we lost a vial of insulin. 

 On Father's Day....Sunday.
Again, we tore the house apart and went through the trash twice.
I had to step back from this one because I thought I might lose my mind
over how we kept losing such vital things. Why does this keep happening?


I've tried so hard to be organized and get us all in a routine, and developing good habits so we WOULDN'T lose these things!!!!
As the time kept on clicking away and we weren't finding this, it began to become an emergency as Ashlyn needed to eat and have her insulin.
So I call the endocrinologist on call (remember this is a Sunday NIGHT now)
and he said he would call in a prescription to another pharmacy for us because our regular pharmacy was closed at this time.
So when I get over to the pharmacy I have to give them all the information for Ashlyn and I wait for the prescription to be filled.


Needless to say, an HOUR later I still didn't have the insulin in hand.
Our insurance wouldn't cover the new vial because I had just picked up a new one the previous Friday evening, and our prescription is for one vial a month. It was too soon to pick it up, come back on July 12th. 

 ARE YOU CRAZY???
So, at 9:30 pm on a Sunday night, I'm told to find numbers to our insurance to get an "emergency override" to cover a loss of medication. Do you know how difficult it is to reach a live person on a Sunday NIGHT?? I could NOT believe that there was this much red tape to cut through to get the medication that my daughter needed to stay ALIVE!!!

 I sent up a "flare prayer to the Lord to help us!!!
Fortunately, the pharmacist saw the problem and finally took matters into her own hand.
Kudos to CVS because this lady told me it was "unethical for her to let an 8-year old go without her insulin"!!

 She got somebody on the phone and played like she didn't know why the doctor called in an emergency prescription for us, but that it must be legit.
So instead of paying $109 out-of-pocket, I walked out of there at 10 pm with our insulin and only the $25 co-pay!!! Praise the Lord!!!


By Tuesday of this week, we encountered another problem we were warned about......
ILLNESS.

For the first time since her diagnosis, Ashlyn has been really, horribly sick.
She acquired "gingivostomatitis" from a younger sibling which started with a very high fever and malaise.
So I'm checking her blood sugars and her ketones every couple hours,

 and pushing the fluids.
Within a couple days, she develops the canker sores in her mouth and stops eating all together. There is NOTHING she can eat without pain.


As time goes on, I'm starting to feel a bit of panic because I'm worried about her getting enough carbs, and all the what if's involved with illness and diabetes.
So I'm on the phone, facebook, and in the pharmacy trying to find something, anything, to relieve her pain. The doctors say it's a virus and there is nothing to treat it, but I don't have much to go on in the way of comfort measures except for Tylenol and crafts that take the edge off for about 4 hours. 

 I find something called "Pink Magic Mouthwash" but notice that after a day or so of this, her teeth and tongue have black something on them. I went back to CVS yesterday and talked to another pharmacist, who was so helpful and understanding, and directed me to some mouthwash called Biotene.

Oh, the relief I felt when I saw her face light UP when she first cautiously poured this into her mouth!! It has given her some measure of relief

 though certainly hasn't minimized the problem. 
 Today, she is worse. 
 More canker sores, more pain, more aimless roaming around the house with a look of exhaustion and weariness in her eyes.
The only thing she seems to like in her mouth is 7-up. 

 So that is where her carbs are coming from for the most part. 
 She can barely tolerate popsicles, frozen go-gurt yogurt, fudge pops, applesauce, ice cream, etc. 
 Soup is okay, but not enough carbs.
I just want her pain to go away.

 She has enough to endure on a daily basis ANYWAY. 
This is about to put her and me over-the-edge. 
 We're back on the phone tomorrow with the
pediatrician and possibly the dentist (as she can't even look at a toothbrush!) to see what
they might have to offer. 


"I had fainted, unless I had believed to see the goodness of the Lord in the land of the living.
Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say on the Lord." Psalm 27: 13,14 (KJV)

"When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee....For I am the Lord thy God.....thy Saviour.." Isaiah 43: 2,3 (KJV)

2 comments:

Jim, Guacamole Diet said...

I don't use CVS because there's not one near me, but I've read stories on other blogs about CVS pharmacies going above and beyond the call of duty to help people in emergencies.

Jill said...

What type of meter do you use?

Shoot me an email at mom2knkc@inna.net

I think I recall seeing OneTouch test strips in your pics. Ive got several of those (still in box...brand new) that I will mail out to you at NO COST if you want them?

We use all Freestyle stuff since thats what Kacey's pump takes.

You are more than welcome to them! It's always nice to have spares for the car, your purse, her room...whenever you need them!