Wednesday, October 10, 2012

Again with the Roller Coaster

So all last week I wanted to find time to blog because things were going great!  I wanted to quick write about it so that I could remember the good feeling before things came crashing down again.  Of course, I did not find time and of course, we are having one of those weeks when diabetes sucks even more than usual and I desperately wish I could get back that "feel good" feeling!

Taya had an appointment this morning.  She was excited to go as she got her new meter and she has been really careful this past two weeks to be taking good blood sugars so we would have information to present to our educator.  Well, we get the print off and it seems her pump has been malfunctioning on and off and we weren't aware of it.  The printout had several rows of clocks- meaning the time was somehow off and so blood sugars and boluses didn't upload.  The days that it did work were great, however.  She only had two reading above 200 in the 5 days that showed up.  Unfortunately her A1c was not great at all.  She cried, I cried, the educator cried.  I am so frustrated for her.  It has always been harder for her to maintain a low A1c.  She never has the drastic highs and lows of her sister, which to me should be a good thing- but she is just never able to get it down where we want it.  We have tried monthly appointments, uploading every two weeks, various pump settings, on and on.  We have not tried sensor because she does not want to be hooked up to one more thing. She is active in sports and I don't blame her at all.  I just want to make it better for her.  She recently did a research paper on T1 for English and while the complications seem light years away for her, she was made much more aware of how devastating they can be.  When I leave appointments like that I am so angry.  She is 15 years old and has been dealing with this for 11 years.  I just want her to get a break somewhere, sometime.  It makes me sad that a hug and a kiss won't take the pain of this away as if it were a skinned knee.  She works so hard at school and sports and diabetes and just being a teenager.  I tried to tell her that it's impossible to balance all the balls all of the time and she needs to be proud of the little things and we will keep working on the rest.  But, I see her frustration, her anger and her sadness in her eyes.  I so wish I could take it away.  I don't think she has any idea how her real, genuine laugh brightens my day- mostly because it's such a rare thing.

Meanwhile, I got a call from TJ's school.  His blood sugar is over 400.  No rhyme or reason there.  It was normal when he had breakfast and I sent venison jerky for morning snack so there was absolutely no reason for a spike.  Got a call a few minutes ago and it is still over 300.  Guess we will be doing a change and hoping that he is not getting sick. He told me the other day he would keep his diabetes if he could just get rid of Celiac.  Most people who aren't aware of T1 believe that the diabetes would restrict his diet more than gluten.  Not that I promote junk food, but how is he going to feel when he is 15 and can't even go through the McDonald's drive thru?  You can always correct for carbs but you can't take the wheat out of a bun!

My friend posted something about it being easier to nail jello to a wall than manage diabetes.  Yep, totally having one of those days.  At times like this it is easy to let my mind wander to all the things that can happen.  We are touring another college next week for Tenley.  There comes another set of worries.  Taking care of people with chronic illness is hard work and there are times I feel completely weighted down by it all.  But, putting myself in their shoes I am so amazed at how they persevere.  I can take a night off, they never can.  And even in the mist of a bad day like today, I see their optimism.  Tori wants to work in the medical field.  She wants to make this better for others.  It broke my heart when TJ came home the other day and asked me if Diabetes was a disability.  I am not sure who told him such a thing but I wanted to kick their ass! He wants to teach his friends about T1  and Celiac and tell them that they all have special things about themselves.  He is a bigger person than me!   Tenley is ever hopeful in her view of the future that includes travel and big cities and adventure.  The same friend told me today that there will be curve balls and we can't be perfect all the time. We just do our best.  There is hope in that statement and I guess the bad comes with the good, right?

Oh, the good news from last week- insurance approved new pumps for the girls,  Tylie and Taya were elected as officers for DECA (treasurer and VP respectively) and Taylor got elected to student council.  I really am proud of my kids- all of them!

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