Monthly Archives: March 2012

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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I Hate Diabetes

I hate diabetes.

It scares me and it makes my heart ache for Medium. It makes me mad and sad.

Medium is a rock star.

He rocks.

He doesn’t complain and he takes it all in stride.

I think sometimes that makes it harder, sadder for me.

Sometimes I want him to get mad.  Sometimes I think he just needs to get pissed at diabetes and pissed at the world who gave it to him.

I worry that he holds it all in.  But I know him, and really, I just think that is his personality.

Thank God.

Ironically, I have thanked God more since having a child diagnosed with a life-threatening disease than I ever did before.

Thankful that Medium is so easy-going.

Thankful that Medium likes to snack…..even at 3 a.m.

Thankful for the development of synthetic insulin.

Thankful for technology.

Thankful for caring doctors, nurses and researchers dedicated to helping people manage this horrid disease.

Thankful for a school nurse who is all over it.

Thankful for babysitters and caregivers who are willing to take on the extra challenge of caring for a kid with a serious health condition.

Thankful for friends and  family members who love me during my times of stress and support me no matter what.

I worry about Medium’s future.

I worry about when he goes off to college.

I worry about how all of this affects his brothers.

I worry about how all of this affects my marriage.

I love Medium.

I hate diabetes.

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Uninvited Evil Twin

If you want to try and understand the highs and lows of diabetes, this might help.

Medium’s BG’s on Monday:

7:18 am-116 Good morning perfect number!

10:18 am-120  Hello outstanding after breakfast number, nice to see you!

12:17 pm-102  Time for lunch, who wants a perfect blood sugar number?  Not me, I already am one!

2:48 pm-75  Ok, so we played outside, but still within range. We’re doing great!

4:39 pm-118  Perfect number after a free snack!  (woohoo, we love “free” snacks!)

6:19 pm-73  Yep, more playing outside, it’s the last day of Spring Break, but we are still in range, we are golden.

9:32 pm-103  How about another “free” 10 carb snack, just for good measure to keep us up during the night?  And our 4 units of Lantus, of course.

11:56 pm-271 WHAT???  Two-hundred and seventy-one!!!!  WTH??? It was 10 carbs of honey roasted peanuts for God’s sake!  And we just had Lantus!

2:57 am-217  Really?  Only 54 points in 3 hours?  Why so stubborn?

7:39 am-109  Oh, good morning  perfect blood sugar, where were you last night?  Your evil twin, hyperglycemia stopped by, uninvited.

And this is just a little snapshot of what really goes on.  Every day is a rollercoaster filled with either squashing highs or chasing lows, or, if you are really lucky, BOTH!  Diabetics (or their caregivers) have to think about their every move when deciding insulin delivery.  What am I going to eat?  When am I going to eat it?  How long will it take me to eat it?  What is my BG now?  Will I be exercising later?  Is it bedtime?  Am I stressed or nervous about something?  Do I have a cold?

Aren’t you glad your body just does what it’s supposed to?  I know I am.

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It has been two months since Medium’s diagnosis of T1D and my husband and I thought we could go out for a quick dinner by ourselves.  Medium’s brother, Large is a very responsible seventh grader and Medium is all over this diabetes stuff.  So we felt okay to leave them all for a quick bite to eat down the street.

Medium’s BG at 6:30 was 113.  He ate a 54 carb dinner and was bolused two units of insulin. (He is on a 1:30 carb ratio.  Meaning for every 30 carbs he eats, he gets one unit of insulin. So in this example he was just a teeny bit overdosed, he should have eaten 60 carbs to make it a perfect 1:30 ratio.)

We left the house at 7:00 after Medium had finished eating and gave them explicit instructions to check his BG again at 7:30 since the drug peaks at 81 minutes and he was just barely overdosed and it was a new insulin pen (new insulin tends to have a bit of a “kick”).  Plus Medium and Small were on their way down to the basement to play a rousing game of indoor basketball when we left so we knew with all of those factors, he could go a little low.  And we told them that if he is low at 7:30 when he checks that he should then have a snack.  Medium is well-versed in snacks.  He is very insulin sensitive and very active and tends to run on the lower side more often than on the higher side.  So he gets “free” (meaning he doesn’t have to dose for them) snacks all the time.  In fact, we rarely ever dose for snacks.  He doses for his three meals a day, and that is usually it.  If we do dose him for a snack, it tends to send his BG’s all out of whack so we try to just give small snacks without dosing when he is lower throughout the day.

So here we are, thinking we are so smart and thinking we have thought it all through and have all angles covered, and we have a plan and everyone knows the plan and so we are leaving for date night.

So much for having a plan.

We hadn’t been gone 5 minutes when Large calls and says, “Medium is thirty-one”.

ME: “I’m sorry, what did you say?  One thirty-one?”

LARGE:  “No, thirty-one.”

ME:  “Shit!”

Medium gets on the phone and asks what he should have.  I tell him he should have 4 glucose tabs and then some peanut butter crackers and we turned the car around and headed back home.  By the time we got there he was on the couch, pale and sweating.  I got him a cold wash cloth and Brian and I sat with him and watched him eat.  We retested him and he was up to 76 ten minutes later.  Thirty minutes after that he was 132 and an hour and a half after that he was 210.  Brian just checked him again, five hours after he was 31 and with nothing else to eat other than the 4 glucose tabs, peanut butter crackers and several pieces of cheese and he is now at 319.  From 31 to 319.

Tonight’s score: Diabetes-1, Rawlings family-0

I hate diabetes.

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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!  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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Rants About Ants

I seriously hate ants.  I know they are tiny and relatively harmless.  But I hate them……H-A-T-E them.  And we get them every year now.  And really bad when it rains.  And it rained today. A lot.  A lot of rain=a lot of ants.  YUCK!  We found some really great ant traps that usually work really well.  But even those aren’t working this time.  There are still several stray ants crawling around my computer desk.  This is where I spend most of my time at home.  I am either checking email, paying bills, researching diabetes, Facebooking, blogging, etc., etc., etc., so it is especially annoying.  It’s like they are taunting me.  Running around my desk, across the keyboard (pretty sure there is a family of ants camped out between the “w” and the “e” key), across the screen of the laptop  and I am sure in my diet Coke.  I can only imagine how many of the tiny buggers I have consumed.  And even when I’m not sitting at the computer desk I feel like they are crawling on me, probably because the other night I got into bed and there was one crawling on my arm.  BARF!  And if those aren’t enough reasons to hate them, I have one more reason….. they sent me to Wal-Mart.  And there is only one thing I hate more than ants and that is going to Wal-Mart. (Okay there are lots of things I hate more than ants, like racism and bullying and diabetes, but you get my point.)  And my friends and family know this.  My sister called me one time and when I answered she asked me where I was.  I replied, “hell”, and she said, “oh, Wal-Mart”.

Yes, I am pretty sure Wal-Mart is a form of hell.  Or at least it is a stop on the way to hell.  But at least you can get everything you ever wanted there on your way to hell.  This is one of the things that annoys me about Wal-Mart.  Most people think it is convenient that you can get anything from shampoo to shotguns at Wal-Mart, I find it obnoxious.  Because they sell so much stuff, the store is huge.  There is no quick trip in and out of Wal-Mart.  And if you get to the register and then remember that you forgot to get milk, well forget it. The next ferry to Milkland doesn’t leave for 30 minutes and you’re going to need one as far away as they put the milk from the check-out registers.  And it’s like nothing is sacred anymore.  I mean seriously, you can get anything there. Salon-only hair products, specialty sports equipment, I swear I saw a pair of Manolo Blahnik’s in the shoe department!  They have a whole section of “As Seen On TV” crap.  Well I guess it’s not just seen on TV when you pimp all your stuff out to Wal-Mart now is it?  And yet, with all this stuff, (stuff I never knew existed, therefore I didn’t need it or want it until I got to hell), ends up in my cart.  Today I had to physically restrain myself from putting a Baby Bullet into my cart. (It’s the smaller brother to the Magic Bullet-which I already have- that you use to make your own baby food!  So cute!)  And when you have this much crap in your store, you are going to attract a lot of people….and not all of them good.  (May I refer you to exhibit A, )  There are other people there, too, like 2 year-olds at midnight and my kids’ teacher when I am yelling at them, and my neighbor whom I told I couldn’t play BUNCO because I had a terrible headache.  Ugh. I just want to go in to the store, get what I need and get out.  I don’t have the tolerance or self-control for Wal-Mart.  Which is why I usually make my husband go.  But I was fed up with the ants.  Me and the ants needed to have a “coming to Jesus” talk.  So I ventured out, in the rain, to hell because come hell or high water, I was getting rid of those ants!  And now if you’ll excuse me, I need to go evict a family of ants from my keyboard with a can of air….that I bought at Wal-Mart.

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Wow!  I just wanted to say a genuine thank you to all of you who have made such nice comments about my blog and are supporting me.  My sole purpose in starting this blog was to vent my feelings and share my experiences as a parent of a newly diagnosed child with type 1 diabetes.   And I enjoy telling a funny story from time to time too.  I don’t know how many other parents of D-kids have found my blog, but I know that a lot of my family and friends have been reading and hopefully you have found something you can relate to.  You all have been my sounding board.  I set out to make myself feel better, and I guess I am making some of you feel better too.  I am addicted to writing now and  I try to write everyday, but I don’t always have the time.  But I promise that when I do write, it will be from my heart.

So thank you, thank you, thank you for being there for me.  Everyone needs to feel like someone is listening and for me, it is you guys!


What You See Is What You Get

Yesterday I posted something very personal, a little too personal according to some.  I do my best to be kind and responsible, thoughtful and respectful.  I am a passionate person so I have to keep myself in check and make sure I am making rational decisions and not emotional ones.  My decision to be transparent yesterday was actually very well thought out.  You see, I am very confident in who I am.  I am confident that I am not perfect and have lots of flaws.  And that is just the way it is.  I am too tired to try and pretend to be something I am not, to act one way with certain people and then another way with others.  With me, what you see is what you get, good or bad.  And I’m not going to lie to you, sometimes, it’s bad.  But I own it.  When I make mistakes, I apologize for them and do what I can to fix them.   I think if people understand where you are coming from and they don’t have to guess what your intentions are, then they respect you.  That doesn’t mean they like you or agree with you, but they respect you.  So I hope that whether you like me or not for publishing my post yesterday, whether you agree with it or not, hopefully you at least respect me. But if you don’t, that’s okay too!   🙂

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Just Another Manic Tuesday

Today is a good day.  It is gorgeous outside, 75 degrees and sunny.  I am home with my kids today and Medium’s blood sugars are in range and he is feeling good.  We met with an insulin pump company and have made our decision.  I just had a good meal and am sipping on a diet Coke.  I am feeling, in a word, manic.  Yes, I said it, manic.  As in manic-depressive.  Does that make you uncomfortable?  Now, let me set the record straight right now.  I have not been diagnosed with bipolar disorder.  And I am not pretending to be a doctor, a psychologist or an expert in any way, and none of this is intended to be medical advice.  These are simply my opinions and interpretations of myself and my moods.  While I do not think that I have the clinical diagnosis of bipolar disorder; depression, anxiety and mental illness run in my family.  And I think I am on the spectrum somewhere.  I don’t believe mental illnesses are just black or white, that either you have them or you don’t.  Instead, I think there are varying degrees of them and I think people have a varying ability to control them.  Just like one person might have slightly high cholesterol and can manage it with diet and exercise, another person might have very high cholesterol and might need medication to control it.  Or how a brittle diabetic has a very difficult time controlling their blood sugars despite their best efforts, while someone else’s body responds well to their insulin therapy.  Much like the sullen teenager dressed in all black, mental illness is misunderstood because of its face value.  We hear the word “mental” and we think the mind has some kind of control over the situation, and sometimes it can. Psychotherapy has proven very helpful to many people in managing their varying degrees of some mental illnesses.  But what most people don’t understand is that many “mental” illnesses actually have physiological roots.  They are chemical imbalances in the brain.  We have no more control over developing  those imbalances as Medium had over developing type 1 diabetes.  Society has made it shameful to admit that you suffer from some level of mental illness, because it is deemed as controllable and therefore you are weak or crazy if you don’t control it.  And talking openly about your mental illness makes others uncomfortable, so most people just don’t talk about it.  Well, I am not most people, and I talk too much so here it is.  I suffer from mental illness, or whatever some people want to call it.  I battle depression and anxiety in varying degrees sometimes. I am a germaphobe and am probably a little OCD, too (I like all the labels in my pantry to be facing out, I can’t sit with my back to a door, I wash my hands, A LOT, am addicted to hand sanitizer, stuff like that).  Some people would argue that these things do not qualify as true mental illnesses.  That only if I was not able to function on a daily basis because of these things could I claim to suffer from mental illness.  Whatever, call it what you want.  But like I said, I believe it is a spectrum and I feel like most people I know are on it somewhere, so I don’t know why we are so afraid to talk about it.  I do not take anti-depressants although I have tried them before.  I just don’t think I saw a real benefit from them, so for me, it is not the answer.  But I believe for some people, it is absolutely necessary and vital to their health and wellness.  I am not going to pretend that I know or fully understand the complexities of mental illness.  I just know that some days, (like today) my mood is great and I feel like I can take on the world, and some days I feel like I am tumbling down a deep, dark hole of despair.   And sometimes, I stay in that deep, dark hole for days or weeks.  I always find my way out of the hole with a combination of love, patience and understanding from my family, a visit to a therapist and an occasional Xanax.  These are my tools.  But just because I can control my depression, anxiety and mood swings with these tools and not anti-depressants, doesn’t mean that others should be expected to manage their disease the same way.

A diagnosis of any life-threatening chronic disease with no cure will no doubt bring on a firestorm of emotions, but diabetes especially so.  The days of a diabetic are filled with highs and lows, literally.  One minute you are in range, and the next you are not, and that can be hard to deal with. Diabetics (and their caregivers) should be monitored for developing depression.  When Medium’s BG’s are in range, I am much more likely to be in a good mood and when they are not, well, that’s when I have to use my tools to keep me out of the deep, dark hole.  The first two weeks of Medium’s diagnosis, I was in the hole. Big time.

I do a pretty good job of managing my mental illness.  As I do with most things, I use humor to deal with it.  I joke about my mental state, call myself crazy or neurotic, because if I do it first, then it takes the power away from the words and others can’t use them to tear me down.  It also makes people laugh and relax and it opens up dialog about a topic that needs a lot more awareness.  Some of my favorite conversations are the ones where I am trading stories of neurosis with someone else.  We both walk away feeling like we are not alone, and ironically, like we are NOT crazy!  And chances are that someone who suffers from some level of mental illness is a stone’s throw away from you right now.  So if you are ever given the opportunity to help raise awareness and peel away the shame of mental illness…..JUST DO IT!

I am not a doctor, or a nurse, or a psychotherapist and this is not intended to be medical advice.  This is my blog, and these are my observances and experiences with mental illness.  Your experience with mental illness may be very different from mine and you may disagree with my take on the situation.  Please seek the advice of a medical professional if you have questions or think you may be suffering from a mental illness.

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Things to Ponder at 3 a.m.

As I laid in bed last night listening to the deep, rhythmic breathing of my husband sleeping next to me, two questions were on my mind.  Number one, why did I have that mocha frappe’ at 5:00 at night, and number two, how can Brian lay here and sleep so soundly when Middle’s blood sugar was 326 at bedtime?  THREE TWENTY-SIX!  It hasn’t been that high since week two of diagnosis.  While Brian slept like a baby, no doubt dreaming of sugar plums (or KU winning the national championship this year), I was wide awake googling “causes of hyperglycemia in type 1 diabetics” on the iPad. I was so worried that I couldn’t sleep (well, the coffee might have also been a contributing factor-I NEVER drink coffee and I have had two frappe’s this week!) yet here he was, sawing logs, sucking the curtains in.  How could this be?  The answer is simple.  We were made for each other. Whoever came up with the theory that opposites attract was right on the money.  Brian is a get-up-early-and-go-do-something kind of guy, whereas I am a sleep-in-and-then-when-you-do-finally-wake-up-lay-around-in-your-pajamas-all-day kind of girl.  His family is from the country, I am a city slicker, he is very laid back, not much into details and I am wound tighter than a drum and can recall, verbatim, a conversation that we had two months ago and tell him what he was wearing when we had it.   He is the yin to my proverbial yang.  And thank God.  Because there is no way that I would have gotten through the last 6 weeks without him.  He keeps me calm (well, calmer).  Sometimes, he is a little too laid back, sometimes a situation calls for a little more attention and that’s where I come in.  I do have wee bit of an anxiety problem that gets the better of me sometimes, but most of the time I operate with a level head.  But I do let things spiral out of control sometimes and if he got as worked up as I do about things, we would both be in the nuthouse and no one would be able to care for Medium.  Instead, when I get all worked up and irrational, he tells me everything will be fine.  We meet somewhere in the middle, and that works for us.   So, while Medium’s high blood sugars last night turned out to be nothing (he was back down to 136 when he woke up this morning), I was prepared with Ketostix, car keys and a cell phone in case it was something.

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