Diabetes doesn't get a vote...

Sarah loves theatre. Loves it. To her core. It's what she's about FARRRRRRR more than needles, and insulin and ketones and carb counting. In fact, I'd say that theatre grounds her. Theatre makes her happy from the tips of her toes to the end of her long hair.

I honestly think theatre is one of the main reasons that diabetes has so little affect on her.

So I have to tell this story, because Sarah will never forget this night as long as she lives. Last night was one of those experiences that you can't plan for, can't create, you can only hope that once in a lifetime something like this will happen and you'll be ready.

Sarah is currently playing in a local junior version of Willie Wonka. She's one of the ensemble members, so she plays a "candy kid" and an "Oompa Loompa". There are probably about 40 of each, so it's a large ensemble and they sing and dance primarily between the main scenes with Charlie Bucket, Willie Wonka, and the bratty kids that accompany Charlie to the chocolate factory.

I was at work when I got a call from the producer of the show at about 2:30pm. The girl playing Veruca Salt is at the ER, might not make it to the show. Can Sarah prepare to play Veruca? - Of course I knew Sarah would do it, she can't tell Anne-Marie no. But I also know Sarah is a planner, and does like her time to get into a role and make it her own. Those who have experience with Sarah being "on the spot" know what I mean!

I called Sarah and explained the circumstance. Her first worry was for her cast member, of course, a delightful and talented young girl who Sarah has been in several shows with. But of course Sarah agreed to take her part for the show that night if needed. She started pouring over lines and music, and I rushed home from work early to get her to the theatre so she could learn her blocking and dancing.

By the time we got to the theater at about 4pm, Sarah had nearly all the lines committed to memory (yeah, pretty sure no one is EVER going to excuse you not being off book early in the show, ever again...). She started working on learning the blocking and dancing. She had her game face on like I've never seen, and was all business.

I was a little worried about her blood sugar. Extra anxiety and adrenaline can do strange things, and as Sarah is usually very calm and prepared, we haven't seen many anxiety/adrenaline issues. 1.5 hours prior to the show her bg was 131 with no IOB. I put her on a -50% temp basal (which means I turned her background insulin to half of what it normally is), and an hour later she was down to 75. I instructed the director to instruct her (I was selling snacks) to turn her basal off entirely for the show, and give her a little snack.

And that was it. Sarah went on with the show and if the producer hadn't told the audience about the cast change, no one would have ever known she hadn't been preparing for 10 weeks, but for 4 hours.

I've never been more proud of my little girl.

This video shows Sarah learning the dance about 2 hours before she would perform to a sold out house:

And this video shows Sarah performing it for the audience:

All I can say is "WOW"! I don't think many people could have done what she did. And I am beyond impressed with her ability to focus and learn this and perform it under these circumstances. 

And no, diabetes didn't get a vote.

12:37am

12:37 and I've stayed up watching Grey's Anatomy simply because I know if I sleep I might not hear the alarm.

She was a perfect 129 an hour ago, with no food insulin working, or so I thought. But now she's 82, and it's kind of funny because I'm probably around 82 and that's completely and perfectly healthy. I check the meter to see the amount of extra insulin she has; i.e. the amount that would have brought her from 129 to 82 for no apparent reason. 0.46 units.

Okay. Math time...

She gets .65 per hour this time of night to keep her blood sugar stable, through that lovely blue insulin pump that both keeps her alive and constantly reminds me that my baby girl's life is in my hands.

I'm her personal physician. I should get a degree, a white coat, a little black bag (do they still carry those?).

Is there any other disease that turns ordinary moms into doctors overnight? Is there any other disease where parents are handed a drug (technically insulin is a hormone, but whatever) that is so potent it can kill? Seriously, what's up with that?

Of course, what's our other choice.

And so I get hooked on one show after another so I have something to keep me from falling asleep so soundly I won't hear the incredibly annoying alarm I installed on my phone.

And I do math at 12:37am.

.45/.65 = .70.

And so I reduce her basal insulin to -.70 for one hour.

And then I blog because watching another episode of Grey's anatomy while I wait seems like gluttony. Am I rambling? I think I might be.

Eh, it's all good. I got to hold my teenagers hand at 12:37am. Okay, so I made it bleed, but still. How many parents of teens get to hold their child's hands while they sleep? So I guess I'm a lucky doctor, er mama.

Sleep is for weenies anyway...

Novalog to Humalog. Oh joy...

Back in January I went online to order insulin for Sarah, and the website told me that we were no longer eligible to purchase Novalog, and would instead receive Humalog. Okay, good to know. A little warning from Kaiser might have been nice. So I asked people who have previously made the switch if I was likely to see any difference. The responses were basically:

"No, they're identical"

"There's a slight difference"

"There's a huge difference"

"Humalog is like water, doesn't do a thing"

I had a stash of Novalog in the fridge, so we started with the Humalog on 3/13/2013. And here's our experience, based on the first week of the month and the last week of the month, so a week before we started Humalog, and our full second week on Humalog.

Glucose in range

• Pre-Humalog: 76% in range with 15 over and 9% under
• Humalog: 68% in range with 38% over

Average Glucose

• Pre-Humalog: 142 average
• Humalog: 177 average (and keep in mind that this required a LOT of extra insulin)

Average Insulin

• Pre-Humalog: 29.1
• Humalog: 35.5

And in case you're a visual person...

Pre Humalog (on Novalog) - 3/1 to 3/8/2013

 Change to Humalog - 3/25 - 3/31/2013

So our conclusion? Humalog definitely isn't working as well. We have been CONSTANTLY increasing both basal rates and IC ratios, and I've reduced insulin sensitivity twice. I reduced duration from 3 hours to 2.5. We're still dealing with highs, no matter what we do. 

Clearly, there's really no difference...

...5:30 this morning...

My interpretation of Scout this morning when he woke us up around 5:30…

“Mama, something woke me up and now I’m hungry. Mama, mama, mama, mama, mama…"

The nose goes up and I can see the wheels start to spin faster…

“Emergency Mama! My girl is HIGH!

MAMAMAMAMAMAMAMAMAMAMAMAMAMAMAAAAAAA!!!!!!!”

And now he’s practically bouncing on the bed.

“FIX IT MAMA! FIX IT FIX IT FIX IT FIX IT FIX IT FIX IT FIX IT!!!!!!!

…and then give me a party because I’m a good doggie…”

And she was 207, which is definitely not the norm for morning numbers for her. I’m starting to get annoyed with our switch to Humalog…

Shout or whisper...

One of the first items I purchased after Sarah was diagnosed with diabetes, was a charm bracelet. It's one of those cute Italian charm bracelets with lots of space for fun charms that represent Sarah. Oh... and it has a medical alert symbol on one of the charms. And as cute as it is, it was a mistake to think it would serve the purpose of a medical alert bracelet.

1. It comes off far too easily.
2. It pinches her arms a bit, and is a little heavy, so she took it off within a few days.
3. It pretty much just looks like a traditional Italian charm bracelet.

The purpose of a medical alert bracelet is to ensure that if you are not able to speak for yourself and tell the paramedics or doctors about a serious medical condition, that they'll be able to figure it out without your help.

Paramedics are trained to look for medical alert bracelets.

Sarah's bracelet

If they're even looking in the first place, you are probably unconscious, and they're trying to save your life - Gulp! If you can't speak, you want your choice in medical alert jewelry to SHOUT for you. "Hey Mr. Paramedic! This person has [insert illness here]!".

The truth is, a medical alert bracelet is like insurance in case of emergency. Most people probably don't end up using it, but it's there if needed. For my fellow mama's with kids with diabetes, there are few times where our kids are out of our sight. Sarah's either with me, or with people who already know she has diabetes, 24 hours per day. Even if she had a severe low at school, at theater practice, at a friends house, the first thing they would tell paramedics is that she's a type 1 diabetic - I have no doubt.

But... (and I hate even writing this, but it needs to be stated) what if she was with me or a friend, and was in a car accident? What if I, or her friend, were not conscious? What if she was unconscious? What if she was unconscious because the stress or adrenaline or circumstances resulted in a dangerously low blood sugar?What if the paramedic who arrived didn't see that she had a medical alert bracelet identifying her as a type 1 diabetic and didn't even know she needed an immediate shot of glucagon?

I love the cute medical jewelry out there, I really do. And I think if your child likes it, and it gets them to wear it, awesome! But keep in mind that the goal of the jewerly is to be seen in case of a serious emergency. What if they're 95% likely to notice a traditional bracelet, but only 70% likely to notice a beaded bracelet. What if they're only 25% likely to notice a woven bracelet?

I don't know why, but it bothers me to think that there's even a CHANCE that a paramedic might overlook Sarah's bracelet, or any other child with diabetes or other illness. So I just urge you to look at your child's jewelry from a paramedics perspective. Is it obviously a medical alert piece? What if it was turned around, would the paramedic know to check the other side by looking at the visable portion?

That's all I wanted to say. This has been bothering me all week since I saw a picture of a bracelet which was totally adorable, but only had one small bead with a medical alert symbol. Please just think about this, and consider whether at that most serious moment, when a paramedics actions could mean the difference between life and death - will your bracelet

SHOUT

or whisper...




In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

Enough is enough - we need to stop the need for burning candles

I try hard not to dwell on the negative. But as I sit here in a hotel room about a bazillion miles from my sweet girl, I can't help but ponder. Truth: a small percentage of type 1 parents are members of the diabetic online community. Truth: Since I joined the community far too many children in this community have died. How many more pass by us unnoticed?

I can't dwell on this. All I can do personally for my "daughter is to help her manage her bloodsugar closely. But we are a community, and there's power in that. Why have we not DEMANDED of JDRF, ADA, and of any doctors and reasearchers who will listen, that this needs attention. Look it up. There are ideas, loose theories, but no one knows why this keeps happening. I read something the other day that one theory is that a low sugar could result in a heart irregularity. Okay... so Mr. Researcher, why have you not selected a hundred kids or so and put a heart monitor on each to see if there's any irregularity during hypos? And while I understand how much pain these families have to be in, has anyone done research to determine as many facts as possible; MDI or pump? Activity, food, insulin in the hours before the death. Insulin in the blood at time of death. Is there any way to confirm long/short acting? Are there any corrrolations with age, race, geography, length of time since diagnosis, other health problems?

I suspect part of the problem is that it is hard to ask these questions. As a D parent myself, I know that diabetes makes parents feel more responsible than probably any other disease. We aren't just responsible for making sure the kid takes a pill each day, we are responsible for their health 24/7/365. How could we not feel responsible when something goes wrong, even though each of us intellectually know that we can't control D as much as we'd like to think.

So here's my plea to anyone who will listen. Let's make this a priority. Even if this takes a small amount of money away from research towards a cure, I want.... We NEED these deaths to stop.

Thank you

Does it mean I'm becoming a zombie if my brains are leaking out my orifices?

Wow, it's been a week. Of course when isn't it? Sunday always seems to turn into Monday, then Tuesday...

One of my methods of coping has always been to take the "problem" and deal with it as a "challenge". I dunno, it just sounds better. A problem is dealt with whereas a challenge is conquered. This was a week of challenges, triumphs, and moments where I just really wanted to blow a deafening raspberry.

We had a week of pretty awesome firsts actually. My oldest, Devon, is working on something very cool and top secret; my middle child, Amanda, started her first job this week; and my youngest, Sarah, had her first real public speaking opportunity.

Diabetes land offered some of this week's challenges, as I continue to fight with Kaiser to get a CGM, as summertime blood sugars are making Sarah's CGM look like a never-ending ride on the Giant Dipper, and as Sarah's nighttime basal (which cost many hours of sleep to get right) seems to have gone ca put - "Hello sleepless nights, I haven't really missed you!"

At home I'm generally feeling disorganized. I seriously want/need to have a garage sale, but can't find the motivation to organize the ridiculous amount of STUFF that I want to get rid of. If anyone out there is a spectacularly wonderful organizer, I will pay you to help me...

Other random notes from this week...

1. Dishonesty doesn't pay, is really stupid, and doesn't end well - so just don't go there, k?
2. If you think I talk about diabetes too much, please feel free to ignore me but before you do, consider reading this post and try putting yourself in my shoes for just a couple of minutes and ask yourself - If it was your baby, would you handle it differently?
3. Friendship is where you find it; sometimes it's at home, at work, or inside your PC. Sometimes you have to be your own friend, and find a quiet moment to just zen out.
4. If you sit under giant lights, you're going to be accosted by giant bugs. And when your child is a pre-teen, telling her that they're on their way to the Ugly Bug Ball just doesn't cut it anymore.
5. I really like teenagers who can still have fun like kids.
6. It's time to take a nap when you get all sappy and sentimental in a costume shop, start reminising with the woman who made from scratch your baby's first costume (red riding hood cape), only to find out that the cape that was so darn sweet on your baby is very popular with big girls who are trying to look sexy/sleazy. Ew...just ewwwwwwwwww.........

And now I'm hanging out at my PC rambling on waiting for IOB to come down to 0 so I can go to bed. I'll let you know if I start having a hankering for brains...

Oh, and if you made it all the way to the end of this, won't you consider leaving a comment to let me know what you think? I enjoy writing for myself, but it's pretty cool to hear what others think. Thanks!

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

The quarterly report card

Tomorrow is Sarah's appointment in the Children's Specialties clinic at Kaiser. She'll see a nurse, doctor (Endocrinologist), nutritionist, child-life specialist, and a social worker. The whole appointment takes about three hours. They talk to us about diabetes management, read through her bloodsugar readings for the last three months - and give us the much anticipated A1C result.

The A1C is our report card. The A1C measures the amount of glucose that has built up in her red blood cells over about 90 days, so it gives us a fairly accurate view of her average bloodsugar.

A "normal" A1C is between 4.0-6.0 (though the Mayo clinic considers an A1C of 5.7 or higher pre-diabetes). Most diabetics aim for an A1C under 7.0, but this is not always easy to achieve. Sarah's last A1C was 6.5 - which is pretty good. But at the time she was having quite a few lows, so our goal this time was to keep the A1C under 7.0, while significantly reducing the number of lows she has.

Pre-game statistics

In the week prior to her last appointment (November 2):
4 - bg readings below 70
114 - Average bg
37 - Average carbohydrates in a meal

This past week:
0 - bg readings below 70 (her lowest was 77)
142 - Average bg
35 - Average carbohydrates in a meal

As you can see, Sarah hasn't had any serious low bloodsugars in the last week - this is a very good thing because low bloodsugar is dangerous. Her average is a little higher than I'd like to see, as her goal is 120. However, this number is somewhat inflated because it only takes into account the tests we perform, and I often have Sarah test an hour or so after a treat just to see where she's at and if she's going to need a correction. If I only tested at mealtimes, this would be lower.

Why do we care so much about her A1C? A good A1C significantly reduces the risk of future medical complications. "the Diabetes Control and Complications Trial (DCCT), ... found that for every one percentage point a patient reduces their A1C they lower their risk of microvascular complications 37%. The study also found that keeping blood sugar levels as close to normal as possible slowed the progression of diabetes-related eye, kidney, and nerve diseases."


So it's not just about keeping bloodsugar from becoming dangerously high or dangerously low. We strive to keep her bloodsugar as close to "normal" as possible. In a Type 1 diabetic, bloodsugar can swing wildly. A small snack, such as an apple juice or handful of crackers, can drive her bloodsugar up well over 100 points. Once I gave Sarah a bag of fishy crackers when her bloodsugar was around 70 - and an hour later she was near 250! Can you imagine? And she feels every swing in bloodsugar. She might feel shaky and sweaty at 60, and develop a bad headache over 250. So we walk a fine line, balancing carbohydrates and protein carefully to try to keep her bloodsugar as level as possible.

And every three months we walk into the Endocrinologists office and await our report card.

Edited on 2/2/2011 - The result? 6.5

Managing diabetes is a lot like dancing on a tightrope

Here's where I try to explain why diabetes is so stressful and time consuming.

I don't think it's something that can be imparted fully without experience, but what the heck - I'm gonna give it a shot. My hope is that my friends who don't have a child with diabetes will understand me a little better, because my friends who do have experience will know exactly what I'm talking about.

My eleven year old daughter has now had Type 1 Diabetes for 10 months. Type 1 Diabetes is frustrating to explain, partially because my daughter is the epitome of health. She's bubbly, energetic, enthusiastic, and outgoing. She always has a smile on her face, and has an amazingly carefree way about her. So when I try to explain why I need to stick close as she's exercising, hiking, under hot stage lights, or just wanted to eat a snack that no other kid would think twice about - I'm sure I'm seen as overprotective.

Okay, so maybe I am a little overprotective.

You must understand that managing diabetes is a lot like dancing on a tightrope. Control is critical and the slightest misstep can cause a disastrous fall. In fact, you don't even need to miss a step. Just as a gust of wind might blow a tightrope walker off balance, any change can affect a diabetics bloodsugar; heat or cold, adrenaline, stress, mismatched socks. I'm not even kidding. Any parent of a diabetic child will tell you that a good percentage of the time when things go badly, there's no reason for it. It just happens. And when it happens, as a parent, I want to be there because unless you live diabetes day in and day out, you won't care for my child as well as I do.

If she's in a class or group of kids, will you notice if she begins to look pale or sweaty? Will you remember that this is a sign that she needs to test her bloodsugar and get carbs into her system NOW? Will you remember that there's an emergency tube of frosting in her backpack in case she isn't physically able to drink juice? Will you be the one to open the orange Glucagon shot - which requires mixing powder with liquid - and give her a shot if she's unconscious? If you don't do all these things, and at least call 911 - how long will it take them to arrive?

Welcome to my world. The world of worry, of unknowns, of feeling like I constantly have to explain why I need special consideration for a kid who looks perfectly healthy. Where my enemy is complacency; mine, yours, everyone else's; because Sarah has never yet had a bloodsugar low enough to render her unconscious. She has had 3-4 that were scary low (40's - 50's) where I had to push a lot of carbs into her system to get her bloodsugar back up to a safe level. ANY of those could have led to something much worse, but didn't because I was there, poking her finger based on mama instincts and catching dangerous lows before they became ultra dangerous lows.

So, the next time you meet the parent of a child with Type 1 Diabetes, remember that if that child looks healthy, happy, funloving - it's not by accident, it's because loving parents and a responsible child are closely managing the child's bloodsugar, 24 hours per day, 7 days per week, 365 days per year. That healthy child is poked 5-10 times each day and receives insulin injections (through shots or a pump) 4 or more times each day.

It's not as easy as it looks folks. Truly.

When life gets you down - pull out the pictures!



Hubby and I in 1992

I've been stressed out lately, no doubt about it. Between Sarah's diabetes, practicing for her part in Mulan, a ginormous school project, preparing for my son's February wedding, planning a trip to DC in March, work, life...
I've been stressed. Last week my son's fiance's mother asked me to send a bunch of pictures of my oldest, Devon, growing up to use on a board she's preparing for his upcoming wedding. I'm home sick with a viral infection, so as not to waste any time (because I have none to waste), I figured this was something I could do without making myself sicker or infecting anyone else.



So I delved into the boxes and albums of photos going back nearly 22 years. You know what I realized? There was a time when life WAS simpler, when I didn't feel like I had the world on my shoulders. And I started to think that I need to find that carefree person I used to be. That even with the craziness that is my life and responsibilities, she's got to be in there somewhere, right? Just because I've had more life experience doesn't mean I need to stop enjoying life.

So now what?

Halloween party with baby Devon 1989

• Step one: Take a nap - seriously. I don't feel like I've been paying much attention to myself and my health lately, so I need to catch up on rest.
• Step two: Go replenish my vitamin supply. I ran out a couple of weeks ago and haven't gone to the store to buy them.
• Step three: Find at least 30 minutes each day to exercise - whether it's walking at lunch or Wii Fit at home. I need to get my body back into shape!
• Step four: Renew my relationships. Undoubtedly my focus has been on Sarah's health more than anything else lately. I haven't spent much time with my husband, and when I have, I haven't felt much like communicating. I'm worn out. I need to relax, trust that Amanda can take perfect care of Sarah while we go out on a date, and enjoy spending time with my husband.




Date at Great America, 1988


• Step five: Find time for myself. I'm sure if I ask my husband to take over one of Sarah's nightly activities, he'd be happy to. She currently has classes Monday, Tuesday, Wednesday, and Saturday, with an occasional Thursday, Friday and/or Sunday mixed in. If I could just come home at 5pm on either Monday or Wednesday instead of 7:30pm, I'd have 2 1/2 hours to myself!

I'm sure this all sounds familiar to a lot of parents out there, especially moms - and not just those with kids who have health issues. We moms run ourselves too hard trying to make everybody else happy, healthy, and fulfilled.

But in the end, won't we be better prepared to love, nuture, and attend our families if we take better care of ourselves?