After a long hiatus, we’re talking about putting the blog back together again. Watch this space for our upcoming changes!
I was going through the stack of papers Hannah brought home from school today and came across a paper she wrote regarding her weekend. I asked her if I could post it as she’s been wanting to do a ‘guest” blog and she said yes.
The other kids at the party were also diabetic and we made Danny really happy. He was recently diagnosed. We made him happy by letting him use one of my sites for his saline trial cause he didn’t like the site he was using now and it made me feel really good.
It’s DBlogDay and this year’s topic is 6 Things Hannah and I’d Like People To Know About Diabetes.
2. I would like the parents of those kids to know that I can teach you what you need to know to allow my child to come to your house for the afternoon to play. (And to those parents that have openly taken on that responsibility, I love you!) For the most part, Hannah’s friends come here because her diabetes is overwhelming to the vast majority of them. Believe me, I know just how scary and overwhelming it can be. I had no choice but to face it head on, you just get to borrow her for a few hours AND you get me as backup! What a deal!
3. Hannah is not sick nor do we treat her as if she was. She is an active, normal, healthy kid who happens to have diabetes and needs to be very in tune to her body. We should all be this in tune to our body actually now that I think about it.
4. She can eat what she wants. Please do not give me the you’re a rotten mom look when you find out I fed my diabetic kid pancakes for breakfast. She can have them, I happen to know to the gram what the carb factor is on those pancakes. Why? Because I weighed out the whole mess the first time we made them just like I do with everything we bake or cook for the first time. The running joke in our household is it’s really easy to tell if we’ve made a recipe recently. If we have, it has pencil scratchings of carb counts of all the ingredients in the margins. This then corresponds with the spreadsheet taped to my fridge which both of my kids practically have memorized anyway.
5. Hannah (and I) would like our insurance company to know that she (and I) really want her to have a CGM. This BS about children not needing them is just that. Her glucose is in such flux due to hormones and growth that I can’t think of a better candidate. Seriously.
6. Your questions are welcome! I relish your questions and I will talk to you all you want about diabetes. Let’s discuss rumors, myths and old wives tails. I’ll debunk what is debunkable and present you with the truth from science and research. Knowledge is power and if we can educate one more person on truth vs. rumor and speculation about diabetes, I’ll be very happy.
Was me, falling off the wagon. I started the month out with the grandest of intentions but I just couldn’t keep up over the weekend with a post a day.
Which gives me guilt because I whine about typing a little bit every day (it’s more like whining about being creative, the typing is the easy part) and Hannah just keeps doing what she does without any break whatsoever.
I have no right to complain so I’m going to suck it up and keep on posting for the two people that read this. My mother and my lawyer…ya gotta love that.
Today was a balancing act that started about 2am while she was still at her dad’s with a phone call that her BG was 395 mg/dL. Correct and wake up at 250 mg/dL. Text from Hannah mid morning at school, she’s clocked in at 410 mg/dL
Awesome. Her text is muddled, you can tell she’s not feeling right. A site is changed and shot administered. Next text tells me it hurt so bad she cried.
(Hannah wants to have a chat with, Ms. Kern and explain to her about the cluster of nerves laying just below the surface of the skin and how the odds play themselves out every time you start poking at yourself with sharp things.)
Anyway, I digress.
I pick her up from school and bring her back to work with me so I can monitor her myself. She didn’t drop that fast this afternoon and spent most of the day feeling, in her words, barfy. Ketones, upset tummy and high numbers. Hate it when we hit the trifecta.
We come home and I went ahead with the planned dinner of spaghetti and Hannah was feeling well enough to spend some time outside burning off energy with her Skipit.
Took herself right down to a 49 mg/dL. After spaghetti!! Not frustrated. Not one bit.
Sent her to bed at 10:30 with a BG of 98 mg/dL and I’ll be doing rounds at midnight and two am to stave off the inevitable rebound.
A member of our local JDRF chapter forwarded this video out to our mailing list this morning and I will admit to tearing up at work while I watched it.
It is so hard to explain to parents whose children don’t have diabetes, don’t have any type of chronic issue that causes concern beyond the normal broken bones, colds and flu that affect every child, everywhere. Remember when they were babies and you’d listen intently on the baby monitor for sounds of breathing? Sneak into their rooms and lay a hand upon their tiny body, warm from sleep, waiting for that reassuring movement that they were still breathing?
For us, that phase never passes.
Every night I worry and I check. This is why I can’t fathom not doing 2am checks. I’m trying to get it into her head that when she wakes up in the middle of the night, check her BG. Sometimes, you just have to pee. Sometimes, you’re just thirsty. For our kids and for adults with Diabetes, more often than not it is indicitive of a larger problem.
If I could take it away, I would. I would lift the concern, the fear and the worry and place it square on my shoulders for me and me alone. Let her be a kid, let her only concerns right now be school and band, fighting with her brother and playing with her cat.
But I can’t. I can however, teach her to be strong and smart. To advocate and to face this monster full on, fight it and eventually, hopefully be able to say…yeah, I used to be a diabetic, but they found a cure.
We live in a small town and our pharmacist is approximately three blocks away. Lou isn’t a franchise, he’s a small store with a huge heart that takes care of my family when a need for medication arises.
When you have diabetes that need is a constant. While I was thrilled to have Hannah start pumping, I was saddened to have to order pump supplies from Animas. I was truly hoping that Lou could handle that for us. I want to give him business, it’s not easy trying to keep a business afloat in the best of times, let alone in this economy.
Now, to make matters worse, with some recent insurance changes I am forced to use a mail order company for our test strips. This past month I called Lou for our standard order and to give him my new insurance number for Priority Health only to find out that Hannah is restricted to 200 test strips a month regardless of Doctors orders.
Let’s do the math on that one. Using a 30 day month, that is allowing Hannah 6.6 times per day to test.
2am check, breakfast, lunch, snack, dinner, bedtime. Six times at the barest minimum.
No allowances for highs or lows. No taking into consideration those long nights where we battle a resistant low, watching the Swedish Chef on YouTube (börk!) to pass the time. Zero thought for the need to basal test (a blood test every hour for 24 hours to make necessary adjustments to her insulin pump) They’ve never seen the look on my daughters face when she says, mom, I need to test, I feel really low. What do you say to that? No, I’m out of test strips? Wing it?
On average, that child tests between 10 – 12 times PER day. Not 6, not only when she’s hungry, 10 – 12 times per day. Her A1C proves it too, at her last checkup with her Endo, her results were 6.75 which makes me very happy considering her age and the myriad of other crazy things her body is going through right now, all of which affects her glucose readings. We can’t possibly get by on 6 tests a day, Hannah’s health depends on doing more.
Here’s the rub, they will do more, they’ll fill that script exactly as the doctor wrote it but only if we order mail order. Now, I’m sure the very nice lady on the other end of the phone has a family to feed as well but she’s not Lou. I can’t walk into that tiny little store where they know my name, know my kids, ask how Hannah is doing and genuinely want to hear the answer.
This makes me sad and I see it as a kick in the teeth to small business. I was never so embarrassed as I was this past weekend when I had to explain to Lou that I wouldn’t be ordering test strips from him any longer. For Hannah’s sake, I have no choice and the insurance companies know it. I’m curious just how big that discounted rate is to make it all worthwhile for Priority to make these kind of demands. Something tells me it’s more for their billing convenience than anything else, and that’s just wrong.
Voting stresses me out. I never feel that I know enough about a candidate and bluntly, I don’t believe half of what they spew to the media anyway. As far as I’m concerned, voting is the best example of choosing a lesser of two evils.
But I queue up every election day regardless, armed with information and a list of candidates that I can only hope will do half of what they say they will. I typically don’t talk politics with people unless they gave birth to me or I gave birth to them. (Significant others not withstanding) I’ve had some engaging debates with close friends and have come close to loosing friendships because we let politics take a front seat. Politics and religion folks, know who you’re discussing it with.
That being said…to the not terribly nice grandma type at the voting booth tonight that was responsible for taking my big piece of construction type paper that was (until I gave it to her) neatly slid into its cardboard folder…I saw you sneak a peek at my voters card and the more I think about it, the more I am coming to the conclusion that I am going to rat you out tomorrow. Not once, but twice and you weren’t as sneaky as you’d like to think you were. When you handed it back to me and it was pulled out of its holder with my top choice (Hello, Governor’s election this year) exposed I didn’t quite know what to say. I don’t believe anything she saw could compromise an election, I’m not wearing a tin foil hat nor am I that full of myself. But, it was an invasion of privacy and trust. I trust that the volunteers are there because they are willing to do a job of that magnitude and are capable of being given the responsibility of maintaining privacy. It wasn’t an ineptitude issue, it totally came across as pure curiosity.
This is a woman that would come into your office and read the letters on your desk and the fact that I walked away and said nothing makes me really irritated with me.
Once I’m done kicking my own hieny for being a door mat, I’m going to call the village offices tomorrow and tell them what I saw.
A post a day during the month of November.
No biggie…right? It is not only a biggie, it’s downright intimidating.
This is it, my kick off to NaBloPoMo and my personal promise to do my best to update on a daily basis no matter how many times I second guess what I type. I’m kind of good at that actually, the second guessing part so I feel this will be good for me, good for the blog and hopefully good for the blogosphere in general.
It’s late as I write this, almost 1 am to be exact. Hannah did her trick or treating earlier with a girl friend and managed her diabetes on the run as well as could be expected tonight. She even compensated for all the running around by giving herself a small treat without bolusing at the Fire Department’s open house and clocked in at 129 mg/dL when she got home. Bolused for pizza and a few pieces of candy and within 2 hours had dropped like a rock to 52 mg/dL. It took a half an hour to get her to 116 mg/dL and I’m staying up, waiting on that lovely rebound that is sure to happen long about 2 am.
And they wonder why I stagger into work some mornings, eyes glazed over as I trudge for the coffee pot?
I told Hannah the other night that I was sorry, she could have been cured by now but I’m obviously a rotten mother. According to the email I received from Prevention Magazine, if I had just given her the right combination of herbs I could have regenerated her pancreas and have it kicking out insulin once again.
What about the cinnamon? Or the avoid all sugar at all costs diet, even in fruit? How do I do this, are you supposed to arrange the herbs around her and light them on fire while sprinkling cinnamon on her head all while chanting to a full moon?
I could let this stuff depress me but honestly, I don’t have time. Between work and school and playing artificial pancreas to an incredibly active and increasingly more independent soon to be 12 year old, I just can’t find the time to care.
But occasionally, I lose that battle and I get mad and I get upset. I don’t always want to advocate and am tired of explaining once again but I understand that people are desperate to believe. We’re a society of take a pill and it’ll make it all better type of people. Medication has it’s place, we all know that but there is no magic cure. When we finally do have a cure, it’s not going to just poof out because some hiker discovered an odd looking plant in the desert and ate it, it’s going to be born from research and testing and clinical trials with proof of more than just one person with positive results.
I refuse to give up hope. I teach my daughter to manage her health and her care. We listen to our doctors and I read and research. I revel in every improvement we are granted that will improve her quality of life and I allow myself to hope that someday we’ll add Diabetes to the list of diseases that we have eradicated.
Lee Ann over at The Butter Compartment has declared September first, Diabetes Art Day. What an awesome concept! What’s bothered me for some time is the amount of waste we generate with infusion sites and test strips and plastic wrapping to name just a few. We’ve saved test strip vials pretty much from the beginning and have re-used them for multiple situations. Hand cream in the purse, aspirin containers, even for geocaching!
I just knew we could come up with a creative idea for the insulin vials though and it hit me one day in the store looking at of all things, a set of twinkle lights made with 22 shell casings. Seriously, they put just about anything on a twinkle light these days, so why not insulin vials?
What you see below is my prototype for a fund raiser for next years JDRF walk. There is no way I can get enough made to make a difference this year but I think by next year it will be a viable option.
If anyone knows of a way to find strands of 10 lights cheapcheap, I’d be very interested in hearing about it! Hope you like our little burst of creativity, thank you Lee Ann for getting us off our collective rear ends and giving life to an idea.