Tuesday, October 11, 2011

A D Disconnect

I am feeling a bit disconnected with Bean's D care.

It's an odd thing to say because I'm still counting carbs, weighing food, doing basal adjustments, changing IC ratios, waking up in the middle of the night to check her BG...all the D care stuff.  Everything I've been doing for the past 16 months.

It's the 'school care' part that I'm feeling most disconnected from at the moment.

That's another odd thing to say since I'm AT Bean's school now.  But, I'm out in a portable, not in the main building.  And that's actually a good thing because she's going through this weird, clingy phase at the moment and I think it would be really difficult for her if I were more accessible.

There's a disconnect because I'm not always the first call or text when something's up with Bean.  And with her doing more of her own care in the classroom, my main point of contact (the secretary, because we still have a nurse only a few hours a week) doesn't see her as much as she did last year.

I'm thankful that Bean is able to do more of her own care in the classroom...especially being on the third floor...but it makes for some gaps in information that are driving me a bit nuts.

Thank God for Wilma (our dexcom 7 plus CGM).  She is helping me fill in those gaps.

I can see the horrible post breakfast spike that I still can't figure out.

I can see her dip low (far too often lately) in the afternoon for no apparent reason.  And then the lovely bump from the trusty apple juice.

I can see her sky rocket when she feels she's too low to dose for lunch and then forgets to dose at all until she's in the 300s.

But even seeing all that data, I feel so disconnected with what's going on with her.

The BG numbers tell one story, while the CGM graphs tell another.

I'm adjusting basal rates to try to ward off the highs only to end up with lows instead.

I'm adjusting IC ratios to try to ward off the super spikes with no success.

Even though I am still a full time pancreas, I feel disconnected.

I look at the numbers, the graphs and it's like I'm looking at something completely foreign.

Not that I don't understand, there's just something that's keeping me at arm's length.

Like I just can't focus.

Almost like I'm looking at someone else's kid's numbers.  They mean something, but don't mean something to me.

I'm frustrated.  Not just with the disconnect but with the issues Bean is having because of the disconnect.

I think it's going to take a appointment with our NP and CDE to bring some clarity.

I'm hoping they can see what I'm unable to see no matter how hard I look.

There has to be a reconnect...for my sake and for Bean's!


  1. Ohhhhhh. I hear ya! If we dont do it ourselves and have notes to go by we have no idea why something is what it is! Its so hard! ((HUGS)) I hope you see the light soon!

  2. I am having a bit of the same with Joe's situation right now too. He is doing more of the care in the classroom...I do have a log that goes back and forth to school and home with him...that is partially filled out daily. It is hard to keep track of when he is "boosting" and for what...I hear you. Love to you. You will get it figured out. xo

  3. This malady is seasonal, I think. The return to school, a new job, daylight waning . . . . I can only imagine how disconnected you must be feeling. Having met you, however, I have absolutely NO doubt you will match up again quickly and be fully pancreatic by Thanksgiving ;). So happy to hear of Bean's independence, however, even though that doesn't surprise me wither! ;)

  4. I'm sorry to hear that things aren't going as smoothly as you'd like it to. Hang in there, it will get better!

    On the breakfast side, have you tried to eliminate sugar? For Andrew, I can't feed him sugar and keep cereal limited. We have to stick with eggs/toast, hashbrowns/egg whites, wheat free waffle (Sugar free syrup)/turkey bacon. He has celiac so I have to use gluten free cereal (Rice Chex). Since the Rice Chex doesn't have much fiber, he will spike everytime even though we use Splenda to sweeten it. I hope this can be of help to you.

  5. being a full time pancreas is hard work, i feel like i go in and out of cycles of being motivated and totally connected with D care, and other days im like a zombie going thru the motions. I see the numbers, treat but cant invest, i think its self preservation, so you dont burn out. The physical distance could be a barrier, because in some ways what happens while you arent there isnt within your control immediately. i have no idea how i will cope with things like you are experiencing.

  6. right there with you my friend. I think today is the first day in at least a week (probably more like 2) that i finally feel connected again and back in the saddle...like i have an idea of what the heck is going on. Hang in there and you will find the groove again! Sending hugs and love your way!


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