One of the most frustrating things about diabetes is that often times there are no answers. No explanations. No matter how hard you try to figure it out, examine it, investigate root causes, use your experience, knowledge, history, there just sometimes is no explanation.

Case in point. We have been having issues recently with what we think may be insulin effectivity. We use a pump. In theory, one of the benefits of pumping is, instead of multiple injections a day, you inject 1 inset every 3 days. You load up a reservoir with insulin, and change out the insulin and inset every 3 days. That assumes everything goes well.


What we think we have experienced the last couple of weeks, is the insulin getting warmed up and losing it’s effectiveness. Could be due to the heat and humidity we had this month. Could be due to my daughter sleeping on her pump at night. Could be due to a bad batch of insulin. There are multiple scenarios, and we can’t figure out exactly what is happening, and it could be a little of all of those things. This leads to more set changes more often, wasted insulin, and extra shots (or more frequent) for our daughter.

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We had another slightly different but related issue yesterday. We noticed the overnight numbers creeping up on us (that is normally where we have been noticing the issue above) when we have to bolus at every check, and she STILL wakes up in the 200’s. So first thing in the morning (a typical site change day has us changing sites before dinner) we changed the site. This has rectified our problem the last couple of weeks, we had no reason to think this would be any different.  She was still high through her horseback riding lesson. Normally she burns off BS while riding. But yesterday she stayed in the 200’s. Here is where diabetes really gets confusing. During a normal lesson, Stella burns off blood sugar. But yesterday she was riding a new horse. He was a little more advanced horse, so she was nervous. That will cause BS to rise. So, was the high BS due to a new horse, stress/anxiety/nervousness? Or was it an issue with insulin going bad? Or, since we just changed the site, was it due to a bent cannula/kinked hose? Are you confused yet? We bolused her again and waited. At lunch time she was still not coming down, so I left the pump alone as it had been refilled with insulin, new tube, new reservoir earlier that morning, and just inserted a new site in case the cannula (the tube inserted into the body) was bent. And we waited again.

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While this was going on all morning (at this point it was now around 1:30 pm, and we started with the site change at 7am), the dogs were alerting. The highs tend to agitate the dogs more so than the lows, and they take longer to fix. So the dog is exposed to the scent for a long time. Raven alerted to a high initially at 2am. So they were pretty spent. After lunch, both dogs alerted. She was 318. That isn’t totally unheard of after lunch, and she had a lot of insulin on board. So we waited. 30 minutes later they alerted again. Stella was 350. At this point, we decided to pull the insulin out of her pump and replace it. I even threw out the old bottle and started fresh. To get things kick started, we decided to give her a shot instead of going back through the pump. It has been a long time since she had a shot, and she freaked out. Lots of crying, screaming, and anger. It was devastating. This disease is always horrible. Sometimes it is even worse.

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Here is the good news. We fixed the problem. Here is the bad news. After all of that, we still really don’t know what the hell the problem was to begin with. It could have been any one of those things that we did, or it could have been several of them all together. Or it could have been a growth spurt or hormones kicking in, and nothing was going to fix it until that worked it’s way through and all we had to do was wait. Type 1’s and their families deal with these issues ALL THE TIME. It is always something. And just when you think you are in a groove, you got it all figured out, this disease throws you a curve. We are playing with lives, and quality of life here. Not shit you want to mess around with, and it causes tension and anxiety for everyone.

I hate this disease. We need a cure.

Team Blackdogsrule

 

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6 Comments

  1. Frank, thanks once again for putting into words one of the things I have felt so often about this dang disease. I tend to be pretty analytical, and will mull over BS logs and carb numbers and recent activities for days trying to make sense of an unusual string of my daughter’s levels – it’s maddening. My wife and I still (about 20 months post diagnosis) will find ourselves taking a level, looking at each other, saying, “hmmm…that’s weird,” and then laughing because weird is actually normal.

    It also breaks my heart to see the image of your daughter getting the injection – I vividly remember being in the hospital after my daughter was diagnosed – she was 10 and had always been petrified of needles and shots. The doctor was explaining the disease, and was telling her that she would have to take “medicine” now, which was not great in her eyes, but manageable,…and then I had to explain HOW she had to take the medicine, and how often she had to do it, and that’s what finally got to her. Not a good day.

    On the plus side (if there is one), she’s not afraid of needles anymore. We need a cure.

  2. I just started following your blog and our daughters seem so similar, it’s scary. My daughter is 7.5 years old and her numbers often rise during horseback riding, when I would normally expect them to go down. But my husband often reminds me that there is nothing “normal” about diabetes and I need to stop stressing over trying to figure out/understand every situation.
    The scenario you described above sounds just like our household – trying to figure out highs and changing the site a few times in a 24 hour window. And the photo of your daughter crying is the same as my daughter (just add brown hair). We had to do a shot recently and it broke my heart because she fought it so much but I just needed to get her numbers down, before the ketones started spilling!
    Here’s to hoping for a cure for both our daughters and all of those with T1. Thanks for sharing your story.

  3. Lorraine Chadwick

    I hate this for you, Stella.

  4. I know what you are going through. Insulin is not a cure. The pump is not a cure. It is just a way of getting the insulin into our children’s bodies. Insulin, injections, pump, etc. are life support for our children. Why can’t other people “get” that? We need a cure!

  5. I am an adult with Type 1 and have had it for almost 37 years. I still can’t figure out what is going on a large part of the time:)

    I own a black lab Abby who periodically writes posts on my blog. Abby at age 7-1/2 has absolutely no training in detecting lows or highs and I have never once noticed her react to them. So I don’t have a DAD in the making.

    I don’t normally advertise my blog in comments, but Abby wrote a blogpost recently that I think you would enjoy: http://testguessandgo.com/2013/09/19/the-great-divide-in-the-doc/

  6. Oh the joys of the rollercoaster. I too went through the same thing last week. Mine were btwn 43 and 342! For all the same reasons as Stella, but add in all the “girl” issues pre and post period and then look forward to pre and post menapause! I have to remind myself that nothing is perfect, diabetes or not. But after 40+ years of this, I also don’t know any different, so there is a weird kind of solace in that. I’m also better off reacting to it on a pump than injections. Unfortunately, I feel that we won’t have a cure as long as insulin and pump and test strip companies are making money. but that’s just my 2 cents. Stella, keep at it. you can, an are, able to do anything!!

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