Tag Archives: insulin pumps

May 18 2013
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It Ain't Always Pretty...But It's My Life

The Mind is a Terrible Thing to Waste

Today’s topic: Diabetes Art

“This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play”.

I used to be a really creative person. But then I had 3 children, a full-time job and a child diagnosed with type I diabetes.

Now my brain looks like this:

Mush

Or, maybe more like this:

brain mush

The old me would have been doing stuff like this:

Resevoir earrings

Or this:

plunger earrings

But I just don’t have it in me anymore.

Creativity…

Just another thing stupid diabetes has taken from me.

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May 20 2012
3 Comments
It Ain't Always Pretty...But It's My Life

Did I Ever Tell You You’re My Hero?

Today’s theme: Diabetes Hero

“Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??”

All of the above.

Really.

I am almost 4 months into my journey as a mother of a child with diabetes, and I can ‘t believe how many amazing new people I now know because of it. (And some people for whom I have known a long time but now have a new-found respect).

We have an AMAZING diabetes educator. I wish I could just keep him in my pocket and reference his brain whenever I need to. Medium’s pediatrician and endo are awesome too. All of the staff at Children’s Mercy Hospital are at the top of their game.

Medium’s school nurse has gone above and beyond in making me feel at ease while he is at school all day long.  His teacher, the principal, all the school staff have rocked.

A woman, whom I had not met in person until today actually, hooked us up with a scholarship for Medium to go to diabetes camp this summer. How awesome is that?

The women of the DOC that I have met this week alone through Diabetes Blog Week have been nothing short of inspirational. And not just the one’s who have multiple children with T1D and husbands with cancer and other children with horrible diseases besides T1D, all of the women who are brave enough to put their inner-most thoughts and feelings; the good, the bad and the ugly, out there for the whole world to see and learn from.

My sister-in-law who, although she has lived with this disease for close to 40 years, doesn’t let diabetes define her. I have known her for twenty years and only in the last 4 months have I realized what all she has had to endure. And things are so much easier now! Even though my own sister-in-law has T1D, I never knew how serious or complicated it was because she made it look easy. It is a part of who she is, it is not her identity. She is a very creative, artistic person and is a great writer. She has always worked in publishing, and now she works for the ADA. She is a huge advocate for diabetes and is an amazing role model to Medium of what it looks like to live with type 1 diabetes. (Plus she doesn’t make me feel bad that I don’t change the lancet on the poker as often as I should!)

My mother-in-law, who went through everything that I am going through, 40 years ago when they used pig insulin and didn’t have glucometers, and didn’t even know what a healthy blood sugar was. I know that if she was able to raise my sister-in-law to be the smart, creative, kind, successful person that she is with virtually no tools to help her, then I can certainly do the same now with all of the advanced technology out there.

Everyone who gets up every morning and goes to work or school, who cleans their house and does laundry, takes care of their kids, runs corporations, plays professional sports, contributes to society and doesn’t let this disease tell them they can’t.

But most of all, my Medium. He does not complain. He does not ask why. He counts his carbs. He gave himself shots. He sticks a needle in his finger 10 times a day without so much as a whimper. He knows how to navigate his insulin pump. He gets A’s in school. He plays soccer. He plays basketball. He plays football. He loves his dog. He tolerates his brothers. He hates taking showers. He loves peanut butter crackers. He gives the best hugs. He is 10 years-old and is scared about what diabetes is going to do to his life.

But you wouldn’t know it.

He is my true hero.

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May 16 2012
2 Comments
It Ain't Always Pretty...But It's My Life

I Am Kicking Ass Over Here!

Today’s theme: One Thing To Improve

“Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!”

This week has been so busy with school year-end activities: field trips, awards ceremonies, concerts and the ever-so-prestigious-and-totally-necessary (enter eye-roll) Pre-School graduation (hey, I am all for celebrating my kids and their accomplishments, this is just one that I think is a little silly and self-indulging, but what the hell….) that I have not been able to get my posts for D-Blog Week up until almost 11 p.m. We were done with all activities by 7:00 tonight so I thought I would be able to post sooner but alas, here I am, the late night poster again. But the reason for my tardy post is a good one. I have been overwhelmed with the amazing and totally supportive comments from all of my new friends! Just think, on Monday, no D-friends. Two days later, so many I have lost count! What an amazing community that is the DOC! Someone said it is the greatest club you never wanted to be a part of! Ain’t that the truth! I have never been so easily accepted into a group before. If you have or care for someone who has diabetes, then you are in, and in with love! Simply amazing!

Well, after all that sticky-sweet (pun intended) talk, it’s time to trash myself. I told you yesterday that I am much more comfortable at finding my faults. Actually I don’t have to find them at all, rather I try to hide them. Sigh.

So grab yourself a cup of coffee, (or vodka, I don’t judge) and pull up a comfy chair because here goes….

I need to be a better, wife, mom, sister and daughter. My family bears the brunt of most of my flaws.

I need to eat better, exercise and loose weight.

I need to stop buying bags and purses.

I am addicted to McDonald’s fountain diet Coke.

Oh wait, this is supposed to be something I could improve on related to my son’s diabetes…..sorry, I am so well aware of my flaws that they just roll off the tongue!

Hmmmm…….let’s see….something to improve on….um….well, there is….no. Well, what about….huh, no. Okay, okay how about…. hmmm……well this is awkward. I can’t really think of anything. It’s ironic. I am keenly aware of all of my personal faults, but when it comes to Medium’s diabetes, I AM ALL OVER THIS SHIT!!! Don’t get me wrong, I make mistakes, there are too many moving parts of diabetes care for even the long-time veterans to not make a mistake now again, but for a rookie such as myself, I pretty much ROCK! (Anyone else find it interesting that in the post where I was supposed to praise myself, I could barely do it, but here where I am supposed to call myself out on something I am calling myself a ROCK STAR?) But seriously, a carbohydrate doesn’t enter Medium’s body without me knowing about it, we have test strips, glucose tabs and snacks with us at all times, we have glucometers and cake gel in every level of our house and in both cars, I download Medium’s pump and pour over his numbers every 3-4 days, I buy home A1c kits so I won’t have to wait 3 months to know how he is really doing, I talk to the school nurse daily. Actually at Medium’s three month check up the other day the diabetes educator was almost irritated that I already knew everything he was going to tell us after downloading the pump; when Medium tended to be high, how close his CGM was to his meter BG’s, what his A1c was.  I am telling you, I AM KICKING ASS over here!

But it is exhausting, draining, paralyzing and all-consuming and my personal health and relationships are suffering because of it. I need to learn how to let up a little bit. I need to understand that I can’t be in control of this horrid disease at all times. I need to remember that I have two other kids who need me, too. I need to praise Medium more often for being such an easy diabetic kid to take care of. I need to remember to breathe.

Huh, look at that, I do have some things I could work on!

(You didn’t really think I was that conceited, did you?)

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May 13 2012
1 Comment
It Ain't Always Pretty...But It's My Life

Happy Mother’s Day

Medium had his 3 month endocrine appointment the other day.  We got an A+ from our diabetes educator.  He liked our numbers  and what we were doing with adjustments and such. His A1C was 6.5–at diagnosis it was 11.4–a “normal” A1c is between 4-6, they don’t actually want it much lower than 6.5 because that probably means that we are having too many lows. So we are doing great! I say we as if I am the one with diabetes, but diabetes is a team sport. And I am the captain. Both the diabetes educator and the endocrinologist asked Medium if he had any questions or concerns.  They asked how he was doing with diabetes and if having diabetes was miserable or if it was ok.  He looked at them like they were speaking Japanese. He has taken all of this very well and is relatively unbothered by it…..for the most part.  There are times when he is frustrated, like yesterday when all the siblings of Small’s baseball team got to have the extra juice boxes and he couldn’t have one. Or when everybody wants to go to Sonic after a game and he can’t have a slushie. But he gets over it almost immediately. One of the best things about Medium actually is that he has virtually no short-term memory, he gets mad about something (REALLY mad sometimes) and then poof, he’s moved on.

I’d like to think that part of why Medium seems unaffected by diabetes is because I am doing such a good job of keeping his sugars in tight control and making sure he is leading as close to the same life as he was pre-diagnosis, as possible. But it probably is really because he just goes with the flow. That part of him has me in awe. I wish I could be more like that.

In any event, he is doing well.  We are kicking some diabetic ass over here! It’s hard work, but so worth it. I would move heaven and earth if it meant my kids would be healthy. There is no greater Mother’s Day gift than three thriving kids!

So a happy Mother’s Day out there to all the great mom’s I know.  Especially the ones who sacrifice everyday, go above and beyond, never have time for themselves, endlessly worry about their kids’ futures and then get up the next day and do it all over again.  In short, happy Mother’s Day to every mom!

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Apr 08 2012
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It Ain't Always Pretty...But It's My Life

Reason # 1,723 Why I Hate Diabetes

It is robbing me of my brain.

Our diabetes educator keeps talking about not letting diabetes run our life, but rather work our life around diabetes. Well, that is really hard to do…..especially for a control freak like me.  Caring for a child with a chronic illness is, in short, exhausting. Round the clock blood sugar checks, carb counting at every meal or snack, lots of math….I hate math.  Having to always be two steps ahead of diabetes is draining. Boy scouts would make good diabetics, you always have to be prepared.  Prepared for highs, prepared for lows, prepared for pump malfunctions, etc. And then there’s the constant worry. They have a continuous glucose monitor for diabetics, they should have a continuous worry monitor for us moms of diabetics that automatically dispenses Xanax, caffeine, wine….whatever your drug of choice is based on your reading.  Yeah, I’m going to invent that….in my spare time.

But that invention will have to wait.  I can barely remember to put shoes on before I leave the house these days. I forgot to account for Small after school one day and had to leave work abruptly and race home to meet the bus (overlooked the fact that no one was going to be home to get him off the bus). I have mailed bills and forgot to put stamps on them. I forgot about a meeting at work. Small has not had his library book on library day, ever this year. (Okay that one I can’t blame on diabetes, it’s been happening since the beginning of school.)

But today was the mother of all blunders. Today I did something that twelve years ago when I was a naive new mother, I would have been downright appalled at witnessing. (Although it should be noted that as a naive new mother, lots of things I witnessed of other parents appalled me. Like picking up a pacifier that had fallen on the ground and putting it back in the baby’s mouth without boiling it first, or letting a 2 and 4 year-old have soda, or leaving a restaurant table looking like nuclear war had descended upon it during your dinner with your children–all things that I eventually did, when I wasn’t so naive anymore!)

Today I forgot to be the Easter bunny. (Enter horrified gasps here.)

Yep, not my proudest moment as a mother hearing my 5 year-old say, upon realizing the Easter bunny stiffed him, “I hate the Easter Bunny!”

How the hell could I forget to be the Easter bunny?  And I didn’t just forget to put the stuff out, I didn’t even buy anything.  Nothing. Nada. Zip, zero, zilch.

Now, you should know, Large performed as Edmund in Narnia the Musical at the beautiful, brand-new Kauffman Center for the Perfoming Arts this weekend, (which, coincidentally, is one of my proudest moments as a mother) so I have been a little pre-occupied with that, but still. How the hell do you forget to be the Easter bunny?

I’ll tell you how.

Diabetes.

There is only so much room in this noggin of mine to worry and remember things and now that diabetes has moved it’s big butt in, there ain’t much room for anything else.

But in true Warrior Mom fashion, I (and CVS) saved Easter.  The Easter bunny was running late this year and came by while we were at church. And I will say, the Easter bunny did a good job of putting together diabetic friendly Easter baskets for the whole family. Sure there was some chocolate and some Peeps (I’m sure I will regret that one), but there was also sugar free gum, lots of nuts, beef jerky and cheese and cool bottled water and Crystal light.

So you can suck it, diabetes. I win this one!

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Mar 24 2012
4 Comments
It Ain't Always Pretty...But It's My Life

Happy Anniversary!

Seems odd to think of an anniversary of being diagnosed with type 1 diabetes as “happy”, but we have real reason to celebrate today!  No, we didn’t discover the cure, and no, I didn’t figure out a way to turn back the clock to a time when Medium didn’t have diabetes.  But our lives have been altered, the path of our journey has changed course and we have a new normal, so different things make me happy now. Like Medium having an A1C of 6.8.  Oh yeah baby, sweet! The hemoglobin A1C test is the litmus test for diabetics to make sure they are staying in range.  A diabetic only knows what their blood sugar is when they test it and who knows what it is doing the rest of the time.  The life of a red blood cell is 90 days, so the test is able to look back and tell you what your average blood glucose was over the last 3 months.  A healthy, “normal” A1C is between 4-6.  When Medium was diagnosed and in the hospital his A1C was 11.4 which told us that his average blood sugar for the 3 months before diagnosis was in the low 300’s.  I bought a home A1C kit which had two tests in it and we took one at his one month mark and it had gone down to 8.6 and now at  the 2 month mark it is 6.8.  Now, I don’t know how accurate the home kits are, but most research I have done says they are accurate within 20%.  We will get an official A1C at the endocrinologists office when he goes for his 3 month follow up.  I will probably do a home test before we go to compare it to the doctor’s office test and check for accuracy.  But none the less, I am so excited that his A1C is so good.  It is almost in normal range and that is even with one month of pre-diagnosis, non-medicated blood cells on board!  So basically we are kicking diabetes’ ass, even without a pump!

And speaking of the pump…..that leads me to my next reason to celebrate today.  I found out yesterday that the insurance company paid the claim for the pump! They denied the claim for the continuous glucose monitor but after a few phone calls, I am fairly certain that will be paid, too.  (They only cover the CGM for one diagnosis code and they must have overlooked the code on his script because it was on there).  So we are spending this weekend going through the all the instruction manuals and taking the online lessons so I can call on Monday and we can schedule our pump training.  Woohoo!

We spent the evening with some of my oldest friends (they aren’t old, I have just known them for a LONG time).  One of the families lives out of town and the other family lives about 25 minutes away and we just don’t get together very often.  There are 8 kids between us and they are all between the ages of 5 and 12, all boys except one girl.  The kids all had a great time together and Medium was right in the mix, hoopin’ it up having a great time.  And I couldn’t help but get a little choked up watching him.  Because while we still have a long road ahead of us and a lifetime of managing this disease, I took comfort in seeing just how far we have come in 2 months and watching Medium having a normal, happy Saturday night with friends.

But I still hate diabetes.

Me and "My Savior".

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Mar 21 2012
2 Comments
It Ain't Always Pretty...But It's My Life

Alarm Clocks, Finger Sticks and Fear

Yesterday I got my new iPhone in the mail and today I got Medium’s insulin pump, continuous glucose monitor (CGM) and My Sentry in the mail.  And I’m not sure which I am more excited about!  Ok, I do know.  I am much more excited about Medium’s pump (although the iPhone is going to help me manage his diabetes, too with apps that I couldn’t get on my android phone).  There are basically three front runners in the world of insulin pumps.  The Medtronic MiniMed, the Animas Ping, and the OmniPod.  We eliminated the OmniPod right away because we felt like it would get knocked off too easily with Medium being so active.  So we met with representatives from both Medtronic and Animas.  Both of the reps we met with were very nice and knowledgeable about their products and there were features on each that we really liked.  But ultimately we decided on the Medtronic, mostly because we really wanted the continuous glucose monitor which, if you choose to get it, integrates with the pump.  Animas doesn’t have the CGM, instead it is compatible with the Dexcom CGM, but then Medium would have 2 devices to keep track of, and the Dexcom is not FDA approved for use with kids.  We have heard that even though it is not FDA approved for kids, sometimes you can get your doctor to prescribe it and your insurance to pay for it, but that seemed like a headache waiting to happen.  And having worked in the medical field for 10 years now, I trust Medtronic as DME (durable medical equipment) company.  But probably the biggest reason that we went with the Medtronic is the “My Sentry” device, or as I am calling it the “My Savior” device.  I am trying really hard not to get overly excited and get my expectations set pie-high in the sky, because it may not work the way it is supposed to.  And it is so new (it came out the week before Medium was diagnosed) that I can’ t find any customer reviews online.  But the concept behind it is AMAZING!  http://www.medtronicdiabetes.net/products/mysentry  Basically how it works is this. Medium wears his pump and CGM all the time. The My Sentry device remotely monitors his blood sugars, in real time, and then alarms on a device that we can have on our nightstand.  So when he is sleeping and his BG goes low, his pump will alarm and it will alarm on our device also.  No more setting my alarm for midnight and 3 am and then going in and poking his fingers and saying a prayer while I watch the count down on his glucometer until the number pops up.  If I wake up in the middle of the night, I can just look at the monitor and it will tell me his BG.  The CGM reports his BG every 5 minutes.  OMG! What peace of mind!  Can you imagine???

While all diabetic parents worry about long-term health effects of diabetes on their children, probably the number one worry is nighttime lows.  When you and your child are sleeping, who knows what is going on with their blood sugars and if it goes too low and he doesn’t wake up……..well, you get it.  Up until now the only choices we had were to pray and leave it in God’s hands, or get up two or three times a night and check blood sugars.  Unlike many families who have been doing this for years, we have only been doing this for two months, but I can tell you it is exhausting.  What if we just took a night off and turned off the alarms?  We would never forgive ourselves if something bad happened.  Risking your child’s life for a few hours of sleep, seems awfully selfish.  But thank God somebody is working on the technological advances in the tools that manage diabetes while others are working on a cure for the ugly disease.  Cue, My Sentry from Medtronic. My big worry is that it will not be as accurate as we want it, or need it, to be and will therefore render itself useless.  And then not only will we have spent $2000 on it (insurance doesn’t cover it) but worse, we will be back to alarm clocks, finger pokes and fear every night.

But here is the real kicker. We will have to wait and see how accurate it is, because we can’t get a straight answer from anyone at our insurance company about whether or not we have a six month waiting period for the pump and CGM to be covered.  So we had to order it and then wait for a claim to be generated and if it turns out we do have a waiting period then we will have to send it all back, or pay for it out of pocket.  So here in my front room with me sits $10,000 worth of life-saving medical devices and supplies and they have to stay in their little boxes until someone in a suit sitting in a leather chair in a corner office in a 50-story building, ten states away, says it’s now okay for my son to have an easier, less painful and more accurate delivery of his life-saving insulin. Really? I wonder if it was the suit’s son?  Make no mistake, I have made every phone call, sent every email and filed every piece of paper that I can at this point to get an answer, and I already know what my next steps are if the claim is denied.  But for now, I will have to wait to find out if My Sentry really does turn out to be My Savior.

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