Tag Archives: carbohydrate counting

Seasons

Three months; twelve weeks; eighty-four days; two-thousand sixteen hours; one hundred twenty thousand nine hundred sixty minutes; seven million two hundred fifty-seven thousand six hundred seconds–how do you measure a quarter of a year? Even though I loved it, this post has nothing to do with the Broadway musical “Rent” (it was the first show I ever saw on Broadway, and these words resemble, albeit badly, words from one of my favorite songs from the musical, “Seasons of Love”). But diabetes has nothing to do with “Rent”. “Rent” is the story of a group of young people trying to survive under the shadow of a horrible, incurable disease…….hmmmm.

Medium was diagnosed with type I diabetes three months ago, in the winter. Now it is spring. A season seems an appropriate amount of time time. Appropriate amount of time for what? I feel like people think I should be “over it” already. That enough time has passed that things should just be back to normal now. That a season should be enough time to figure out how to live our new lives and just accept that “life goes on”. And it does. Life does go on. The cool, rainy afternoons of spring will, no doubt, make room for the hot, lazy days of summer. And certain things have gotten easier. I know how to count carbs, I know how to handle lows, and I can change out the reservoir set on Medium’s pump in less than 5 minutes. Diabetes doesn’t consume my every waking moment (and most of the sleeping ones too) anymore.

But you know what? No matter how many winters melt into spring or summers fade into fall, Medium doesn’t get better. If anything, he gets worse. Elevated blood sugars over time will wreak havoc on his body in the years to come. No matter how much time passes, we will still have to check his blood sugar 10 or more times a day, we will still have to count carbs and deliver insulin with every meal, we will still have to check his blood sugar overnight (or worry about him), we will still have to see the endocrinologist every 3 months, we will still have to bring snacks and rescue supplies with us wherever we go, we will still have to teach every caregiver, teacher, friend, school nurse, or coach he ever comes in contact with about his disease and what to do in case of an emergency. It never ends. The worry, the fear for his long-term health, it takes it’s toll on us.  All of us. We are exhausted; mentally, emotionally; physically. The stress it has put on this family is immeasurable, yet palpable.

But most people think that we are “fine”. We are still going to work every day, the kids go to school and keep up with their activities. We are going through the motions. Everything seems “fine”. We don’t really have a choice.

But we are not “fine”.

We will never be “fine” when the health and well-being of one of our kids is threatened. So until there is a cure, we are not “fine”.

So feel free to keep asking us how we are doing, or if there is anything you can help us with. Feel free to continue to pray for us and for a cure. Remember that as the seasons change, our efforts to keep our son healthy don’t. Feel free to let your heart ache for Medium and what he has to go through.  Because no kid should ever have his life threatened and his innocence ripped from him. And no family should have to helplessly stand by and watch it happen.

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Am I Weird?

I was talking with a coworker of mine today who is a nurse. She mentioned that when she was 18 her 9 year-old sister was diagnosed with T1D and she talked about helping take care of her. Another coworker asked if that is what made her want to be a nurse. She said that it was part of the reason, the other reason was that her own daughter was diagnosed with Leukemia when she was 7 and that taking care of both her sister and her daughter made her realize that nursing was her calling. And then she said something that struck me as odd. She said that taking care of a chronically ill child changes you, it makes you weird.

Now, I agree with the first part of that statement. It has not even been three full months since Medium was diagnosed, but I am definitely a different person. Most notably, I am exhausted. Actually, I am beyond exhausted. I am exhausted on steroids. I am almost non-functioning exhausted. I keep dragging my butt in to work every morning and saying, out loud, as if anyone really cares, “I don’t know how much longer I can keep up this pace”. I sit at my desk and think about whether I think I can make it through the whole day without going to the parking lot on my lunch break and taking a nap in my car. I pump myself full of caffeine and I trudge through the day. It feels like I am walking through quick-sand, like I am in slow motion. Somehow I am making it work, keeping up with my responsibilities at work and, for the most part, I feel I am pulling my weight. I know that I am capable of doing more, being sharper, going above and beyond. But I don’t even feel bad that I’m not because I am giving all I can right now. I am all tapped out. That which doesn’t kill us makes us stronger–if that is true, I am IRON WOMAN. But I still don’t get what she means by the “it makes you weird” part.

I don’t say these things so I can get sympathy. I am not the only tired woman in the world, not by a long shot. And I am keenly aware of how, even though things are pretty rough right now, they could be so much worse. On my daily prayer list are so many other families that are going through far worse. But the fact remains, that right now, life is hard. And I am trying my best to get through with my sanity and dignity in tact (incidentally,bursting into your bosses office and announcing that you have to leave because you forgot to pick up one of your children does not help this plight).

Besides being beyond exhausted, I have changed in other ways, too. I carry needles and glucose tabs everywhere I go, I can divide by 30 in the blink of an eye, I know the carb count of a plethora of foods, I stab my child with needles frequently, I no longer make jokes about being in a diabetic coma, I buy home hemoglobin A1C tests, I have insulin pens in my butter dish in the fridge, I know what basal and bolus mean, I regularly inspect my son’s feet, I stab my non-diabetic children with needles on occasion, I have Skittles and Kool-Aid in my underwear drawer, there are smears of blood all over my son’s sheets and some other random places around my house……

Huh, I think I know what my coworker meant now.

At least I don’t have a zipper on my tongue.

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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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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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Thirty-One

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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Lesson #1: Type 1 Has Nothing To Do With Eating Sugar

Admittedly I have become somewhat of an expert in the field of “parenting a child with type 1 diabetes”, out of necessity, of course.  But it still amazes me how misunderstood type 1 is.  I can’t believe how many people make comments about how Medium can’t eat sugar anymore, or how much healthier we are going to be eating now.  But my personal favorite is the person who said, “Medium always did have a sweet tooth”, as if to imply that Medium did this to himself by eating too much sugar.  It is hard not to get angry. I so wish that I could have prevented this somehow or that I could take it away from him or turn back the clock, but I can’t.  No one can.  Medium got this because he was genetically predisposed to it (his aunt has it, too).  Then one day, while his immune system was busy fighting off some kind of cold/virus, it decided to also attack the islet cells that live on his pancreas and produce insulin. Type 1 (also called juvenile diabetes, but not as much anymore because adults can also get type 1) is an autoimmune disease.  So, now he has hardly any islet cells left that are producing insulin.  Without insulin, the carbohydrates that he eats (which turn into sugar) cannot get out of the bloodstream and into his cells where they can then be used for energy.  The carbohydrates (sugars) stay in his blood and makes his blood sugar levels too high.  Without sugar to use as energy, his body burns fat.  As fat is burned it produces toxic acids called ketones which poison the body when present in large amounts.  What happens next is bad, real bad.  It is called diabetic ketoacidosis or DKA for short.  DKA is a medical emergency.  So, type 1 diabetics have to give themselves the insulin that their bodies do not produce.  They give themselves fast-acting insulin with every meal based on how many grams of carbohydrates they are eating, (this is called a bolus) and they give themselves a slow-acting insulin once a day so they always have some insulin working in their body (this is called basal insulin).  They constantly have to check their blood glucose levels to make sure they are in a safe range, because the wonderful, amazing bodies that God gave us know exactly how much insulin to produce to cover the foods we eat, but diabetics can only guess.  So if a diabetic is managing his or her disease very closely, they are logging their blood sugars before and after meals and activity and logging how much insulin they are taking so they can find the right balance.  And the extra fun thing about kids (*sarcasm warning*) is that as soon as you find a good balance, they have a growth spurt, or get sick or go through puberty (all things that affect blood sugar levels) and then you are back at square one, making adjustments.  And a type 1 diabetic has to do this everyday, for the rest of their lives or until my prayers are answered and a cure is discovered.

Type 2 diabetes (also called non-insulin dependent or adult-onset diabetes) is very different.  Type 2 diabetics still produce insulin, their bodies just do not use it correctly/efficiently, this is called insulin resistance.  This is the most common form of diabetes and thus more people have heard of it and thus, thus people innocently confuse type 1 and type 2.  Low activity level, poor diet and excess weight are risk factors, so in some type 2’s this was preventable.  One of the biggest differences between type 1 and type 2 is that with a change in diet and exercise and lifestyle, type 2 can sometimes be curable.  Type 1 has no cure.  Type 2 diabetics can also sometimes manage their disease with just diet and exercise or a pill, no injections.

Whew!  That was kind of long and boring.  But while you are now half asleep, I feel better that I am doing my part to educate people.  And after all, it’s all about me!  Hee, hee.  And, believe it or not, I have oh-so-much more that I could tell you about, but boring people with long-winded stories about sugar is actually my dad’s department. (Sorry dad!  I just couldn’t resist!  Love you!) (My dad has worked for a sugar company for more than 25 years and he likes to tell detailed stories about beets vs. cane sugar……zzzzzzz).

So if each of you would take what you learned here today and tell 2 people and then they each told 2 people, and so on and so on, then everyone in the world would understand what type 1 diabetes is and then I don’t have to get angry at anyone. Plus that would get us closer to a cure, too!  Could you do that for me, please?

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