A Diabetes Blog to Stay Connected with Us

I'm going to use this blog to keep family, friends, and the occasional visitor up to date on how we are doing managing Grace's new diabetes diagnosis.

Tuesday, October 18, 2011

Oh What A Week

Sorry I haven't updated in a while. It's been an exhausting week of fighting with the insurance company.

Here's what's been going on:

At our last doctor's visit, we discussed the idea of ditching the syringes in favor of the "pen system." Grace receives at least 6 shots of insulin a day. While she's doing better with the insulin, the pen makes it a little less painful and much more efficient. Know what stinks? Being out in public trying to use a syringe to draw an insulin shot. We usually do it in the bathroom (yuck) or the car, or, people just stare at me and wonder what the heck we're doing.

The pen is preloaded insulin. It looks like a pen with a twisty knob at the bottom. You twist the knob to the dose you need and you're ready to go. No drawing up a syringe and much more discreet. Originally, the pharmacy filled the script, no problem. We used it 2x and it went well. But then the next day we realized it didn't have half unit doses (which we need). When we went to get a different pen, the insurance company denied us. Our office has called repeatedly and each time insurance says "no." We are now taking up the issue with Tom's benefits manager. This is flat-out exhausting. Each day is filled with new people to call, more information to retrieve from people who never answer the phones, etc. I've had it.

In better news, Grace is making wonderful progress in therapy. We had a few rough times of sobbing and crying. She frequently asks why won't it go away, I don't understand why my body is doing this, and the "it's just not fair" statement. It's heartbreaking. No way of getting around it. In therapy we've been working with the idea of getting Grace to "own" her diabetes. The upcoming JDRF Walk has helped with this. We went door-to-door on Sunday collecting donations and a few times she actually spit out "I have diabetes." Then at school yesterday, she spoke to her whole class about life with diabetes. The kids were making posters for her pretzel sale and lots of them had questions about diabetes. With her teacher's help, Grace explained what diabetes is and answered all kinds of questions from her classmates.

When Grace told me what she had done, I was stunned. I tried to not make a big deal out of it because she's starting to be of that age where any reaction from me is really annoying. So I played it cool, high fived, and moved on. The relief I felt inside was simply overwhelming. Our therapist said progress would come quickly but, wow. I think Grace still struggles with her diagnosis but it's only been since July and we know it will take time. But this is an excellent sign that she is moving forward.

Speaking of moving forward, we have the JDRF Walk this Sunday. "Team Grace" is hitting West River Drive and we're tickled to have raised almost $1300. I'm excited for Grace to see all the families out there dealing with the same stuff we are. I know she must feel lonely so to see other kids *just like her* is something so important. I also think it will be an emotional day for us. Honestly, I feel pretty lonely and isolated. Diabetes management is something that takes over your life. If you're not on the phone dealing with some problem or another or filling out paperwork and talking throughout the day to the school nurse, you're planning meals, counting carbs, evaluating supplies, studying numbers, talking to the school nurse again. It has essentially become my full time job. I think it is also important for *me* to see how many moms and dads are sharing the same struggles. Note to self: no eye makeup on Sunday.

If you're a part of Team Grace, you have no idea how much it means to us that you have committed to walking with Grace and our family. Seriously. I feel like we have an army behind us. If you can't be there (many of you have other commitments or geography in your way), we know you are with us in spirit! I'll try and snap lots of pictures from the day and post next week. Hopefully we'll also have some good news from the insurance company. Thanks for everyone's continued support and prayers and intentions. They are very much appreciated!

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