ketones | WifeMomPancreas

Apr 16 2012

It Ain't Always Pretty...But It's My Life

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.

Tagged A1C, auto-immune diseases, carb ratio, carbohydrate counting, diabetes, family, humorous, hyperglycemia, hypoglycemia, illness, immune system, insulin, ketones, kids with diabetes, type 1 diabetes

Apr 01 2012

This Is Not A Joke

I’ve learned a couple of things about blogging in the last month.

#1 It’s kind of a lot of pressure once you know people may (or may not) be reading what you are writing.

#2 I cannot write when I am exhausted and stressed (which coincidentally is all the time now). This past week has been especially bad as I have been working crazy hours all over the city supporting a go-live for work and I was on-call this week. So I could barely form spoken sentences, let alone string together a series of meaningful, coherent words for a post. Even as I write this my eyes are feeling heavy. Small has been trying to come down with something for a few days and last night he succeeded. He came into our room at 3 am barking like a seal and on fire. This is exactly the same thing he had 2 months ago when Medium was diagnosed with T1D. In fact, the only reason I took Medium to the doctor the day he was diagnosed was because I was already going with Small so I thought I would have this little “peeing” problem looked at.

Now Small is sick again. And illness in this household is a whole new animal. For starters, when Medium gets sick now we have to refer to a new chapter in our diabetes book called “Sick Day Management”. I won’t go into details, because frankly, it confuses and scares me and I am floating down the river of denial thinking he will just never get sick and we won’t have to deal with it. Think about it, if Medium gets insulin to cover food but then vomits the food, now he has too much insulin. But if you stop giving him insulin altogether he will go into DKA (which if you remember is B.A.D. bad). So what do you do? Other illnesses jack with BG’s too, usually make you run high so you have to make adjustments in your insulin doses and constantly check ketones to make sure you are not going into the dreaded DKA. It’s just a mess I don’t want to deal with. So, if I pretend it won’t happen then it won’t, right?

And as scary as it is for Medium to get sick, I think what scares me more right now is when either Large or Small gets sick. It is believed that a person is genetically predisposed to developing T1D and that it happens as a result of the body’s immune system being called upon to fight an illness in the body and then it also decides that the islet cells (the cells that produce insulin) are intruders too so it attacks them. When enough of those islet cells are killed, very little insulin is being produced and the next thing you know, you are very sick and someone in a white coat gives you the life-changing diagnosis of type 1 diabetes. But when the body decides to do this, no one knows. So now when Large or Small gets sick, I am freaking out wondering if this is the illness that is going to send their immune systems to battle with the wrong enemy.

Large and Small are more likely to develop T1D now that their brother has been diagnosed. There is no way to know for sure if they will ever develop it. I mentioned in an earlier post that they can test them for the auto-antibodies. If they test positive for them, then it is likely they will develop T1D at some point in their lives. If they test negative for them, it means that, for right now, they are not likely to develop T1D. But they could develop the auto-antibodies at any time so a”no” isn’t really a “no”, it’s more of a “not right now”. So I still have not decided if I am going to have them tested. I know I could not handle finding out one of them tested positive right now, so for now, we are not testing. Maybe someday, when Medium’s diabetes is like second nature to us, I will feel strong enough to hear the news, whichever way it goes. But now is not that day.

So in a way, I worry less about Medium. His cards are on the table. We know what he has and we are dealing with it. With the other two it is like a riddle that I have to solve. Will they get it? If so, when? Can we prevent it? Will we be ready for it? Will we catch it early or will they get really sick? How will they handle it? Are they worried that they might get it? How could I possibly handle another child with this horrible disease? This is not a joke, this is my life. Someone solve the riddle for me.

Tagged anxiety, auto-antibodies, auto-immune diseases, diabetes, diabetic ketoacidosis, family, health, illness, immune system, insulin, ketones, kids with diabetes, sick day management, type 1 diabetes

Mar 10 2012

3 Comments

It Ain't Always Pretty...But It's My Life

Set The Plates Down

One of the more frustrating things about diabetes is learning how to do things all over again. It really is like a rebirth. The moment your child is diagnosed is when they are reborn. You spend a couple of days in the hospital, and then they send you home with your new child. Those first few days in the hospital are filled with adrenaline and exhaustion and family and friends are calling and visiting and you aren’t really thinking about how daunting the next few weeks are going to be, you are just focused on learning what you need to know to go home (changing a diaper and how much formula to give or giving your child an insulin injection and how many carbs they can eat). Then you get home with your child and you and your spouse look at each other, like, “I can’t believe they just sent us home with him. We don’t know what we are doing. How are we going to keep him alive?” Then you spend the next several weeks or months getting up several times overnight to check your child and sometimes feed him. And the interior decor of your home has drastically changed. Now you have diapers, wipes, bottles and pacifiers stashed in every room (or you have glucometers, insulin pens, alcohol wipes and glucose tabs strategically placed in every room). Now it’s been a few days and you are feeling brave and ready to leave the house. You know the drill, pack a bag. All of those supplies that you have in every room in the house, now have to be portable as well and go everywhere you go.

Your new life with your “newborn” is full of firsts. First time she rolls over, first smile, first time he sleeps through the night. Or, for your reborn diabetic child, first time you let her to go to a friend’s house without you, first time going to the movies (how many carbs does movie theatre popcorn have, and exactly how many pieces of popcorn is in a cup?), and the first time you let him sleep all night without checking his blood sugar. First time parents (of newborns and reborns) have so many questions and are so uncertain of their abilities to care for their child. There is a reason that we talk about how valuable experience is. Because it is. I remember with each passing week when Medium was a baby that I gained more confidence in myself as a mother and trusted my ability to care for him more. It has been the same with his rebirth. It has been 6 weeks since diagnosis and I can’t believe how much I have relaxed about his care. I spent the last 6 weeks feeling like I was running around with a 10-foot tall stack of porcelain plates in each hand and I had to keep a perfect balance between my right hand (blood sugars being too low) and my left hand (blood sugars being too high) and my arms were getting really, really tired and holding on to all of those plates paralyzed me from being able to do anything else but worry about letting the plates get out of balance or, worse, dropping them all. But six weeks of experience taught me that Medium would be okay if the stacks weren’t perfectly balanced all the time. So I set the plates down and now my arms are free to do more important things, like giving Medium a much-deserved hug for being such a rock-star!

Tagged diabetes, family, health, ketones, kids with diabetes, type 1 diabetes

Mar 06 2012

2 Comments

It Ain't Always Pretty...But It's My Life

Ketostix, Curve Balls and My New BFF

As is commonly the case when dealing with diabetics, especially newly diagnosed children with diabetes, today got totally derailed. First of all I forgot that my husband had to leave early today and he usually does the morning routine at our house (yes, I know, he is a saint, blah, blah, blah). You know, that brings up another thing that irritates me (referring back to my Ground Rules and Disclaimers post). My husband wakes up early. Always has, always will. He tries to sleep in, but he just can’t. It’s his natural circadian rhythm. I am a night owl and loathe, LOATHE, getting out of bed in the morning. So this works for our family. But I get so tired of people thinking that he is a saint, and I am some kind of slacker, loser who is so LUCKY to be married to him. I mean, I am lucky to be married to him, for lots of reasons, and although we have been through some rough times, I love him. But why should he get some kind of award because he gets up in the morning and takes care of HIS kids? What, is this 1952? Oh, and you know what else? He does laundry, and dishes, too. And, most of the cooking falls in his department (although microwaving hot dogs and making Bosco sticks in the toaster oven isn’t EXACTLY cooking, but I will take it). (Neither of us is very good at cleaning. I “pick up” a lot and clean toilets daily, but the rest of the house…..well, just don’t come over unannounced please). But do you know why he does all of this? BECAUSE THIS IS HIS HOUSE AND HIS FAMILY, TOO, AND WE BOTH WORK FULL-TIME AND I DO A MILLION OTHER THINGS THAT HE CAN’T BEGIN TO ACCOMPLISH BECAUSE THEY ARE NOT HIS STRENGTHS!!!!! Housework is not my strength and he complains about the way I do laundry. So, I pay all the bills, go through all the mail and kids backpacks, schedule everyone’s appointments, make sure everyone has their permission slips for field trips and are signed up for soccer and have their order forms for school picture day, make sure to refill everyone’s prescriptions, keep in contact with all 3 kids’ teachers about their grades, homework and projects, check-in with the diabetes educators and talk to the school nurse several times a day, etc., etc., etc., and he does the household chores. That is what works for us. GET OVER IT EVERYONE! Now, all that being said, I AM very thankful that he realizes that he should take some of the responsibility in keeping this household running, as I know that some husbands still think it is 1952 and that their wives should do it all. But this is the bain of my existence, of most women I’m sure. No matter how hard I try to “do it all” I just can’t. And all I want is for someone to acknowledge what I do get done and appreciate me for it.

WOW! I really needed to get that off my chest. Whew, now where was I? Oh yes, my day got derailed (much like this post just did)! So my husband left early and I had already let my exhausted self sleep a little more this morning so now I was going to be late to work since I had to take care of Medium and all of his medical issues this morning. I needed to jump in the shower, but instead I had to go downstairs and count carbs and stab my child with a needle. Then stalk him to make sure he ate all of his breakfast and then have him wash it down with his ADHD medicine (oh yeah, did I mention that along with having T1D, Medium also has ADHD. He was diagnosed the summer before first grade and we tried everything we could to keep him off medication but nothing worked and we started him on meds three years ago. I HATE, HATE, HATE him on his ADHD meds and we have tried different meds and doses over the years, but the fact is, that he needs them. With them he is a self-controlled, respectful, straight A student (albeit without any personality-the part I HATE), without the meds he is an out-of-control, flight of ideas, jibber jabberer who makes impulsive decisions and disrupts his classroom. The idea is that he will learn what self-contol feels like on the meds so that one day, we will be able to take away the meds and he will still be able to control himself. Yeah, that’s the idea. I don’t buy it.) Anyway, back to the derailment of my day. Of course he misses the bus so I have to take him to school and of course he is late so I have to park and walk him inside. But that’s okay, it gives me a chance to say hello to my new best friend, the school nurse. Now I am late to work. Ugh. I manage a couple of hours of work before I get an email from my new BFF, the school nurse. “Medium’s blood sugar is 310”. Whoa! We haven’t been in the 300’s since right after diagnosis. This information along with the fact that he told me he was super thirsty when I checked him at 3 a.m. had me a little worried and I thought it best that we check his ketones. But of course we don’t have ketostix (the strips you use to test for ketones) at school. So I left work, drove home to get the ketostix and went back up to see my new BFF, the school nurse. Medium peed in a cup, I dipped the stick in, and 30 seconds later, ta-da, no ketones. Big sigh of relief. My boss let me work from home for the rest of the day instead of driving the 30 minutes back to the office. I was able to work in peace and quiet all afternoon and get my day back on track…..until the next curve ball anyway.