Friday, May 17, 2013

Better The Devil You Know…

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

I've been wincing and cringing at today's blog prompt all week.  It makes me uncomfortable.  I kept thinking I'd weasel out and go with another Wild Card topic.  It is definitely a loaded question.  Choose any other chronic condition, and aren't you sort of saying, "I have it harder than those guys?"  Not that this is criticism of the prompt. Quite the contrary, things that make us think; things that provoke us, help us grow.  They are far more interesting to read than Pollyanna Sunshine.  But even though I gave it a lot of thought, I still wouldn't trade my daughter's diabetes for another chronic illness.  (Can I trade it for good health? I'd gladly do that!)

I have rheumatoid arthritis. I have a close family friend with a son with Cystic Fibrosis. My niece is a Leukemia survivor, and I wouldn't trade Eleanor's diabetes for any of those, and truthfully, I doubt they'd trade with me.  (In fact, I was suspicious that Eleanor had leukemia when I took her to urgent care for the visit that ultimately resulted in her diabetes diagnosis… I was relieved that it was not leukemia, but that's a whole'nuther blog post.)

I mentioned today's topic at the breakfast table, and my husband said, rightly, "Well at least with diabetes you're the one in control." True. Sort of… I don't feel very in control after a week lows-run-rampant. But what he means is you are the one who manages your care for the most part.  He's right about that, and he ought to know since he himself also has LADA diabetes.  You do have more control when caring for a PWD, especially when I compare it to my own very stressful visit with a doctor this week in regards to my own arthritis.  I was referred to a new doctor who was supposed to use imaging to help me diagnose and identify a source of pain, but instead, he freaked out about the pain medications that I'm already taking, you know, the ones my other doctors had prescribed (all of which are above board, on the up and up and filled at the same pharmacy, by the way.) As a result, he refunded my co-pay and sent me home refusing to treat me, and even suggested I needed an addiction specialist.  (No, what I need is pain relief and then I'll stop taking all this crap)  Pain medications are a pain.  All medical care is a pain because of the cost, the dependency on doctors, insurance approvals, denials, appeals, etc.  But, pain medications carry the extra burden of the DEA.  Oh joy! So, Michael is right about that.  At least with Eleanor's diabetes, we don't have to worry about getting access to schedule 1, 2 and 3 drugs and all the rules and hassles that come with them, and that does make it easier.  I certainly wouldn't wish that on her.

The other thing I've thought to which to compare her diabetes, is my 9-year-old son Reid's food allergies.  In fact, this morning, I read another blog that did just that.  Robin, at Keep Calm & Carry On, suggested that she'd like to have her two children trade chronic health conditions for the day.  It was an interesting read.  But my situation is a little different.  Right now, her having food allergies instead of diabetes feels like a good trade, because we've been living with food allergies for 7 years, and they are just background noise, so it feels like a better deal… but you know what that is?  That's just another example of: Better the devil you know, than the devil you don't.

And once we get to know the Devil Diabetes, it will become background noise too, and that seems like a goal to work toward.

One more thought. I read another blog, Tom at Diabetes Dad wrote about giving your child's diabetes back to her: In Death She Taught Us Our Greatest Accomplishment.  I've been thinking on this for a while now.  It's actually quite difficult to separate in my head to whom the diabetes happened.  She is so young that we are having to manage so much of it for her right now.  I've worried about the entanglement in my own mind.  Whose diabetes is this anyway?  In fact, sometimes when I write this blog I use all the wrong pronouns and I talk about "our" CGM, or "we" were low.  When I proofread it, I always change it to "her" CGM, and "she" was low, but it says a lot that I write it the other way first.  That seems a little weird.  Am I taking on too much ownership of it for myself.  Am I taking the ownership away from her?  These are interesting questions, because I never had those ownership concerns with Reid.  Perhaps because he acquired his food allergies at 2, an age when of course, the problem was mine to manage.  At 6, it's a little more complicated.  She's in between dependent and independent.  At 2, Reid wasn't even potty trained! I did literally everything for him.  If she was 14, I'm sure she'd take on more of the responsibility from the start.  (Although, I'm glad she's not 14, I've read that kids cope with a diabetes diagnosis much better if they are a bit younger, oddly, you'd expect the added years of syrupy blood running through their veins to mean MORE complications, but no, kids who are diagnosed as tweens and teens have more complications than kids who are diagnosed younger.)

Even as I've been sitting here typing, I have calmed my addled brain. I realize that my worry may be unfounded.  I'm not still managing Reid's food allergies.  He does that himself.  I send him to parties and camps, and co-ops and lunches and he fills his own plate, and I trust him to know to ask about foods.  He carries his own Epi Pen (I keep another in my purse just in case he forgets.)  I'm putting him on an airplane to fly alone across the country this summer to go to a week long camp without me.  That's pretty much independent. Yep.  We got him there just fine.

So what that tells me is that I've done a healthy job of turning over the responsibility to him at an appropriate rate.  I can see that he's doing fine and eats independently, I can cut myself a little slack and realize that I'll almost certainly do the same things with Eleanor.  Two months in is too early to let go.  But since I've done it before I know that I can, and I know that I will.


  1. I do think kids deal with illnesses at a younger age differently. We have a friend now on dialysis and he is having to make major life changes in his late 50s, not an easy task! Kids are more resilient, in my opinion!

    1. Yeah, I totally agree, they do adapt more easily than we do, but I try to remember that it still isn't easy. I have to work at giving her room for it to back up on her. And it does! Boy we've seen some serious tears. It feels like a weight way too heavy for a six year old to sob and say, "why me? Why not one of my brothers? Why do I have to have diabetes?"

      Growing up, I had a good friend who was deaf. I still remember the anguish I felt one afternoon, when I was visiting her. Something had happened between her and the other cheerleaders on the squad, and she was excluded. She wasn't part of a conversation and she was feeling left out and deeply hurt. I was in another room, trying to be invisible, but I heard her wailing to her mother, "why me? Why can't I hear? did you do anything wrong when you were pregnant? how did you let this happen to me?" and many other painful awful words that weren't really meant for me to hear. It had a profound effect on my teenage soul, and those words have echoed with me even before I became a mother myself. Just knowing, that something will not be perfect, no matter what, and it's all too easy for kids to cast the blame at mom and dad. It probably feels safest and easiest to do so.

  2. When I first started having symptoms, docs thought I had MS. They were sure that was what it was. I was having most all the classic symptoms. Four years of poking and prodding and pain that morphine laughs at (but makes me not care and sleepy), they settled on mild lupus or mixed connective tissue disorder.

    I hate summer. I live in Texas. I can't be in the sun. Heat and I do not get along. Stress sends my body overboard. I have allergies. I have other crap. I do not have diabetes, and I am thankful.

    To answer your prompt, no, I would not trade. I at least know what it is I am dealing with. I've been doing this for fifteen years now. I know most of the patterns. I know what sets me off (usually), and try to avoid them (sometimes). I pace myself. I know just how far I can go most days, and what the consequences will be if I don't. Those consequences get scheduled in.

    I think it is much more difficult when it is your child. Only trade I would make is health.

    1. I have had a few people say something like, "Well, at least you already know something about diabetes, since Michael has it." and I guess that's true, but it's only okay for me to say that kind of thing… not them. It's almost like someone saying, "you can handle this, but I can't." or worse, "It's easier for you than it would be for me."

      It isn't easy for anyone. None of these chronic conditions are easy, but they do become the status quo. We met my dad and his wife at one of the kids theater performances a few weeks ago, and I walked across the lobby greet them. He said, "are you limping?"

      Well… yeah, Dad, I am… I have arthritis, remember? But he doesn't remember, and maybe that's okay too, because it means it isn't center stage 24/7, it isn't all I talk about.

  3. I agree that letting go comes in stages and diabetes becomes a part of the big picture of life rather than all consuming as it is at first. I think when they are little it does feel like we as parents are suffering from it too and maybe suffering more because we can't do anything about it but support them. Ultimately it is their challenge to face. I think it's hard (at least for me) to realize I can't win this battle for my child. I mean we can do trials and advocate for the cause but on a day to day basis, they must still live with it. And I found this prompt hugely disturbing. You did a great job with it!


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