pictures

Living out of a box

I have heard the term before, people say it when they move... "we have been living out of boxes for weeks until the furniture arrives" and such.
But I realized yesterday that some of us actually DO live out of a box, in a different way.
The mail man had come and gone, the dog had his barking fit that lets us know that the mail will soon be here, and after the mailman leaves the neighborhood, he calms down.
But yesterday, as he does sometimes, that dog started in again later, and barked like a freak until I almost wrestled him to the ground.
Then I heard something ruffle by the front door, The kids looked out the window, "THE U.P.S GUY!!!"
We never got a delivery when I was a kid. My parents would never have paid shipping costs for anything.
Once, when I was maybe nine, my aunt and uncle sent me a birthday present in the mail. It was a miss piggy doll, and I was really, really confused about that. They had never sent me a birthday card or anything before, and never acknowledged my birthday ever since. It made me feel funny. I..... I really didnt like miss piggy.
But the with Ebay, and Amazon.com, and all of the other ways you can get goodies over the internet, my kids know the U.P.S. guy by name.
But, yesterday it was a 12in cubed package. That meant only one thing.
And it is always much more fun to open than miss piggy.
Diabetic supplies.
I am always excited to see if the insulin is actually cool, or if it burns my hand... I always inspect and count the infusion sets, and the lancet devices, and the test strip vials, check to see if they all have the same code, so I know if we are going to be able to go a month without recalibrating, (when it works out that way, I always whisper a loud, "YESSSS!" and even my youngest son will hear me and say, "oh are the test strips all the same number again?")
Sometimes I get a surprise, like IV 3000, or more alchol swabs than you can shake a stick at. (like we really use that many ever) and infusion pump syringes... all sorts of goodies.
It is pretty fun. Getting all of the medical supplies, as, I think that people who deal with medical conditions become sort of conissuers of supplies.
But as I fold the box tops back together and set it aside, because we have to get going soon... I think about it.
In this box is everything my son needs to stay alive for one more month.
What if they stopped sending it? What if his insulin was not available? What if the FDA did a recall on insulin, or pumps, or both?
These things.... This box of supplies that I am so happy to open every month is only life support.
And somewhere out there in this world, there is a kid who can't get the supplies he needs, or his insulin is rationed. There is no package, there is no pump, no alcohol swabs to clean his skin so that when he uses an old, dull syringe to inject his insulin, he pushes infectious bacteria into his skin... perpetuating the disease.
Somewhere, there is s kid with no test strips... and no faith that he will have what he needs the next month, let alone the next day.
Puts things into perspective for me, as I carefully put the box aside, and put my arm around my son, and realize that he is one of the "lucky" ones.
And I say a little prayer to all that is good that he stays that way.

Guessing game

I GUESS I started a little controversy with the advocating blog. I am getting a little annoyed by posts telling me NOT to be angry about my sons treatment at a program he attended... And is has become all about religion to this lady.
All I want to do is blog about Diabetes, because, I like to read from other D people, and get feedback, and advice. This is supposed to be a place where I feel like I am understood.
I guess there will always be some folks that take offense to something.
Many thanks to Denise and Angela, for their eloquent ways of pusing to point to places that I, for emotional reasons and not able to put it.
Love to all,
and to my D friends, Good luck, Good numbers.

Things not to do with a quickset inserter

Catchy title, I know, Though perhaps this blog may be more aptly titled, "How to lose your childs trust and cause great emotional disturbance in less than one second"
I know I pretty much gave the whole blog away with that. But, still, if you could spare a moment, read on, and see what a jerk of a mother I am.
My son Nolan has done all of his own shots since day two of having diabetes. All of them. I have had to sneak up on him as he sleeps do do lantus, and now, as he pumps, I dont even get that joy.
A seven year old boy with sandy colored hair and hazel-green eyes took his first syringe in hand, holding it carefully, wonderously, and dreadfully between little tan fingers with white nails bitten to the nub, he touched the surface of his flawless child-skin with the tip of the thin needle. He turned it, as I looked on, Biting my tongue. Seconds passed. Seconds turned into minutes, as he turned the needle around and around in both directions, and pinched the skin.
His fingers released the syringe, and gravity slowly sunk the hub of the needle into the epidermis, and slightly into the dermis where his nerve endings gave him reason to pause. Twisting once more, he began to bite his lower lip. His eyebrows cinched and he slowly forced the hair-fine needle into his subcutaneous layer. Very audibly he let his breath out, and climbed his fingers carefully up the syringe and pushed the plunger down.
And every injection, and every site change has been the same ever since. He never let anyone do his injections, he never let anyone change his sites.
My son is a control freak, and likes to do his sites alone, with nobody breathing down his neck..
He does them slowly, by hand, in a very painstaking manner.
It hurts to watch.
I just want him to do it fast. I just want the stress to stop and for him to just get over it and get on with it and then with life. But he is not like that.
And I cant accept it.
I got the big idea that he should start using an insertion device after seeing how many kids at camp have no pain with it.
I helped a girl use a Sil serter for the first time and she said, "OH MY GOSH! THAT IS SO MUCH BETTER!!!" Her parents never bought one for her, and since I had an extra one, that I gave to somone who had one already, just for a spare, I asked for it back and gave her that one.
She walked home so happy that she had found a new way to insert her sites.
I thought that I could get Nolan to try it and see if he liked it better, instead of spending so much time with his ritual, he could just push a button and...."POP" it would be over.
Now, I would not try to get him to do something that I had not done, I have tried a site inserter to put a site in my own arm, and the insertion did not hurt one bit. However, after a few minutes the site started feeling really.... crappy, (for lack of a better word) It was tender, and annoying. I took it out. I am a wuss. But I get it now.
So, I took it into my head to buy an inserter for the quick set, and had it shipped with the next batch of sites.
There it came in a little box... all blue, and harmless. Looking like a tiny alien spacecraft. I loved it. I was going to help Nolan see that insertions did not need to be such a prolonged trecherous thing.
They could be fast and easy and something you could do in a heartbeat.
So, I showed it to him, and offered a reward for trying it.
He said, "OK" but he wanted to go do it himself in the bathroom.
He has been afraid of inserters SO much that he has hidden under a chair in the educators office, in tears.
But this time would be different. I would show him how his diabetes could be a little easier.
But I thought, if I let him alone, he is going to do it by hand, and just say he did it.
I followed him into the bathroom, saying, "I want to watch" He said no, I ignored and pushed on, because, Hey, he is going to like it!!!!!
He held it to his stomach and whimpered, and tried a little, and I sat by, prompting him on, encouraging him, reminding him of how good squash cakes were once he tried them...
Soon, he was crying, and I took the inserter from him, and he sat with his head in his hands, crying... the pressure, I suppose.
So, was I sympathetic?
Of course not.
I looked, and thought, and stared at his shirtless torso. I cautiously moved my right hand toward his abdomen as his head remained in his hands. I tested to see if he could see, by making a few fast motions. He could not see. He had his eyes covered.
I looked at the inserter, and at his side skin, and in less than a second I pressed it on his skin and pushed and the site was in.
Now... what was supposed to happen is tha the would say, "NOOOO-- dont!!!! leave me alone!" and then I would point out that it was already in, and he would look at it, smile, and say. "OH!"
But that is not what happened.
He screamed immediately, a scream, not of pain, but shock, horror, and hurt. He screamed like I just sold him. He screamed, and he ran, as tears flew from his eyes, he ran to his bedroom, where he screamed and cried for another ten minutes.
So, maybe not the best Idea I had.
I had so wanted to make him see that this was better.
And really, is it?
I know now that I only wanted to teach him something cool about D,
But I realize now, as I hold him in my arms and apologize to him for breaking his trust... That is is always him that will teach me.
As it always has been, it is HIS diabetes. Not mine.
Also, I am up for mother of the year award, so... go ahead and cast your vote my way....

RUT

Sometimes you get stuck in a diabetes rut. Your kid wakes up, checks the blood sugar, tells you an either unfortunate or frightening number, ex. "its 201" or "it's 47". You wake up, make breakfast, or tell them to get a waffle and skim milk, and they do it. The bolus or they forget to bolus. Mostly they forget to bolus and they tell you they did anyway.... You finish showering and drink a half cup of coffee, which for some reason has lost its flavor to you.... Then you check the bg an hour later and it is near 400.
"Did you bolus?" you ask,
"yeah" they say, and roughly translated from school aged kid to english this means, "no, but I dont want you yelling at me, so I am just going to say I did."
You correct, you send him out to play.
You call him in to check.
The other kids watch silently while their friend runs home to make himself bleed.
And you realize... it is his diabetes... not mine.

I knew my grandma well, for a grandkid, which means, of course, I knew that my grandmother loved me, made killer root beer floats, and made me special ballerina sandwitches any time I asked, ( wonder white bread, peanut butter, lettuce, and hidden valley ranch powdered seasoning, of course, that is what ballerinas eat!!!)
I did not know much about my grandma at all.
I knew she was a nurse, that she grew up on a farm in Ponca, that she wanted to be a red cross nurse when she was five years old.
I knew she had survived cancer, once, before I was ever born, and twenty one years after I was born, it tore her from her living family once more.
What I did not know about grandmother is a thousand times greater that the small pieces that I can say, though the tiny snippets I had were enough to make me love her completely.
I did not know that my grandmother was the Charge nurse on the medical floor at the same hospital I work at now. (I knew she worked there, but not that she was charge)
I did not know that my grandma used to work holidays and weekends, because young nurses she worked with had families to be with (this was when my grandmother was older, her kids had left home, her husband had passed... )
I did not know how much it meant when the whole nursing community of sioux city respected her. And they did.
When I did my first clinical rotation, my instructor, Judy Turner, was talking about her many years at that hospital. I took a chance, and told her, "My Gramdma worked here when it was St. Joes" Judy looked at me, doubtful, "what was her name?" I told her, "Marion Johnson" and Judy threw her head back, shook it back and forth, and said to me the only words I needed to ever hear about my Grandma, "What a lady..." she said, with a dramatic voice of reminisscence.
I almost cried.
That sums it up about my grandma. WHAT A LADY, and that she was. Professional, wonderful, so full of.... Grandma Johnson-ness.
One thing I did know though, from the time that I was young... seven, I guess, was that my grandmother was passionate about Diabetes.
She was the first "Diabetes Educator" in Sioux City. She had left Mercy to help her husband at Smith Villa grocery that he owned, back in the day when a corner grocer could make a buck, and she came back when he died. She was asked back, to start a diabetes education department.
I remember her talking to my mother, excitedly, about how they used oranges to teach people to give shots. She was sitting with my mother teaching her, and my mother, several times, drew water into an insulin syringe, and injected it into an orange. I was not too interested, I turned to watch Hee Haw. But, my Grandma, for one reason or another wanted my mom to know how to do this, she was smiling though, excited.
There was no diabetes in our family. Type one or Two... But my Grandma was teaching.
She took me to her office once. I remember walking through a parking lot. My grandma in her white dress, her white stockings, her white hat, and me.... We passed a sign that only recenty put up. It said, "Marian Health Center" They had been St Joes only weeks before.. I looked at my grandmother, her name being Marion, I gasped, "Grandma!!!! They spelled your name wrong!!!"
"Dont tell anyone, they'd feel bad" she said. She held my hand and walked me into her work where there were tall filing cabinets, desks, and lots of doctors office type of things.
*
When Nolan was first diagnosed, the very first image that came to my mind was that of my grandmother showing my mother how to inject into an orange.
I had a life changing diagnosis on my hands...
and still I felt strangely protected.