I should be asleep right now, but I've been buzzing all night, knowing that I had to test Afton's blood at 3am. It's done now, but due to my own ineptness with the meter and arguing with a very sleepy child, it took much longer than it should have, woke up her sister, and I had to poke the poor kid twice. I suppose the bright side is that she clots well, right?
Anyway, here's a little sample of what I've learned so far:
There are two kinds of diabetes, Type 1 and Type 2. Type 1 is juvenile diabetes and is permanent. The pancreas shuts down and no longer produces insulin, which is why someone with Type 1 diabetes is insulin dependent for the rest of their life. Diet and exercise won't make the problem go away, and there are definitely no pills available.
Symptoms of Type 1 include frequent urination (Afton would wet the bed every night and was using the potty every 1.5 hours during the day), excessive thirst (Afton was sneaking drinks at night--I thought that she just thought it was fun), excessive hunger (Afton would eat a snack or a large meal and then declare "I'm even more hungry!" in a rather plaintive voice), listlessness and vomiting (that would be what I mistook for the flu), and weight loss (we thought she was going through a growth spurt).
The symptoms are vague, but when you put them together like that, it's easy to see what's going on.
Type 2 is different in that it's a "disease of luxury", according to the literature the diabetes education nurse gave me. Often triggered by a lack of exercise and being overweight, Type 2 diabetes is when the pancreas produces insulin but the body resists it. Thus, Type 2 diabetes patients can control their diabetes with exercise, diet, and pills that make them more receptive to insulin. This is the type that often strikes older adults and overweight adolescents.
In a way, Afton is not on a special diet. She eats everything she used to eat--nothing is completely off limits. However, we have to be strict about the number of carbs she consumes, which limits the amount of "fun stuff" she can eat. Take, for instance, a peanut butter sandwich. Say we have a 45 gram carb limit on her lunch. The slice of bread is 15 grams of carbs, the jelly is 5 grams per teaspoon, but the peanut butter is free (of carbs). So her sandwich is 20 grams of carbs, which leaves me 25 grams to play with. A serving of fruit is about 15 grams of carbs, so that leaves me 10 grams to give her. An 8-ounce glass of milk is 12 grams of carbs, so if I give her 6 ounces, we're fine. HOWEVER, Afton will be the first to tell you that a one-slice PBJ is not enough food, even with a serving of fruit tossed in. So then we look to the free foods. In this case, I would toss in some cheese and maybe a sweet pickle (anything under 5 grams of carbs is 'free', as long as you don't eat too many at once).
Understandably, Afton's a little confused and upset by this change in her life, but between blood testing and insulin shots, she's once again our happy little girl. I've been nervous all day today, mostly because I don't have a nurse behind me telling me that I've put the insulin in the syringe properly or adjusting the insulin according to her glucose reading. And I'm going to explore the flexibility of our finger poker--the instructions say that just about anywhere I can pull up a pinhead's worth of blood is an acceptable draw site. With Afton's tiny little fingers, she's getting tired of the pokes. I am too--it's hard to aim for the right spot away from the cuticle but not on the pad of the finger.
There are several ironies of this situation, but several blessings also. The ironies include the fact that I have to go in for my 3-hour glucose test "as soon as possible," according to my OB, because my 1-hour test results were "way off". I may be joining Afton in finger poke land very soon. There is also the fact that I've always shuddered a bit at the thought of joining the medical profession because I don't like dealing with bodily fluids. Whee. Though, since this is my daughter, it's different.
But the blessings have been amazing. The sense of peace I felt in the ambulance ride over as soon as the EMTs figured out what was wrong was amazing. The fact that Mat was able to take most of the week off because he had accrued so much personal time, and that his clients mostly chose to cancel on him anyway, is also a blessing. And since this trial obviously had to happen at some point, it happened at just the right time where I'm not too sick to help Afton, but I'm not so busy with a newborn baby that I'm overwhelmed. (It also happened at a time when I was pregnant, so I couldn't just say that I wasn't going to have any more kids. Trust me, I would have been very tempted.) The Lord has definitely had His hands in the details, and I've felt His peace and been given the strength to cope since we got to the hospital.
This is a very long post, but I've been meaning to do a brain dump since we left the hospital. I'm starting to get sleepy. A few last words, however: I am striving to avoid pity, but I will be posting about the downsides of our life adjustment as well as the upsides. This is a lifelong change that will take more than a little getting used to, and as I'm in the first week of it, there will be a lot of dumping on the blog. It is cathartic and you, my friends, have always been a great support.
Also, don't send me any JDRF (Juvenile Diabetes Research Fund--or something like that) literature. I got plenty at the hospital and their attitude really bugs me, as it reads something like: "I may be living a normal life with diabetes, but it really stinks and won't get better until there's a cure." If a cure happens to be developed within Afton's lifetime, great. But having a lousy attitude and pinning your hopes on something that's still a nebulous dream as an excuse for said attitude makes me want to smack some people. (Remember, this is 4am--I have no filter at the moment.) Having diabetes just means finding a new way of staying healthy.
All right, I think I've said enough. Peace out, for the time being.
8 comments:
Karie, I'm so sorry about all of this. We're leaving out of town (and I'm sneaking in a few blog-reads before we go) but I just want you to know that you and Afton are in my thoughts and prayers. I know through close relatives that type 1 diabetes can be a really hard thing to deal with. I love your attitude and I know you'll do everything in your power for Afton. I don't mind the dumping at all - please dump away!
I feel for you through and through. When we found out about Peanut I felt guilty that I'd given it to him somehow, terrified that ANY mistake/mindless slip-up on my part could kill him, and not wanting any more kids to do this to them as well (hence why this one coming of her own accord was really somethin' else).
I hear you on the overwhelming thing. You'll get into a rhythm soon enough, even though after a year of doing the same stuff day after day here, I still hate it. I hate that my kid has to suffer and I hate seeing other people's kids getting to play anywhere they like and eat anything on earth without fearing a trip to the ER or death. The anger and frustration is still there, but I'm getting more used to it. I hope you don't get angry about Afton's situation; you didn't do it, you didn't cause it. All you can do is deal with it. I'm so sorry.
As for the finger pricking, my OBs accused me of having diabetes with my last pregnancy and I had to finger-poke four times a day at least. I found that the forefinger and middle finger are the toughest skinned (and thus hurt far less) and the side (facing into the body, not outward) of the fingertip hurt the least, too. It sucks now but she'll get used to the feel of it. And you'll get pretty darn quick with the glucose monitor, too. I pity her the insulin shots, though.
Best of luck to you! Thanks for sharing your journey.
*hugs* I think b/c I can't mentally wrap my mind around the thought of having to stick my child repeatedly with needles (its 2 am and I just finished feeding Caleb... again), the part of this post thats making me shudder is the thought of doing a 3 hour glucose test. The 1 hour was hideous and they made me do that TWICE. I am SOOO sorry honey that they're gonna make you do the BIG one.
Upside- the bed wetting should get better now! See silver lining! Yes, yes I'm reaching but hey you gotta find the upside where ever you can.
I'm so glad that Afton has a smart Mommy who doesn't fool around with medical stuff and knows when to get help. You did good Mom.
And I hear you on being grateful for the EMT's who figured out the problem. Medical personnel who know what they're doing and are open to the whispers of inspiration are worth their weight in gold.
Diabetes sucks but if you have to get a currently incurable illness at least its a treatable one... I know right now all the literature and everything you're having to learn is seriously overwhelming but I promise it will eventually be second nature and you won't even think twice about it and Afton is little enough that with in a year she won't even remember that things used to be different.
*hugs*
OH my goodness. I can't believe it all. You seem to be doing so well. It's interesting how we suddenly become experts in the area we have to be at the drop of a hat. Wanna know about Autism? I'm your girl. If I need to know about diabetes, i'll give you a call. I hope she adjusts to the changes soon and everything gets into a good rhythm.
Wow Karie, what a journey you've begun. Thank you for sharing your thoughts and experiences...as we all go through difficult yet different challenges, it's also nice to hear about others' challenges and how they face them.
I think blogs are for this exact kind of brain dumping! If it's not what anyone wants to read, then they don't have to. In the mean time, I'm very interested in hearing the details. I remember when I was in 5th grade and we did a week-long project where we were paired off with someone else from the class and had to pretend we were running a household. We had to budget, plan meals, etc. And, at some point (or several points) during the week, the teacher would inform us that some life crisis had happened--such as a fire, losing a job, having a sick child, etc. For some reason, hearing about the current lives of various friends reminded me about this project. Sometimes, things just happen that we aren't expecting--and while there's a learning curve and probably a great deal of frustration that accompanies those changes, it's nice to know that Someone is watching out for us. He never allows us more than what we can handle. And, what a blessing that is because we know we can handle the situations that arise in the course of living.
My neighbor and dear friend went though this very thing ten years ago with her daughter. Last fast Sunday, she talked about it, about how it had been a devastating thing at first, and how hard it had been to make the adjustments, but how much she has learned from her daughter through the experience.
Life is just so weird. Just = wham. But I like very much what you have written. It is sound. It makes you seem sound. And that's good.
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