Life for a Child

Wednesday, April 6, 2011

When Your Life is Ruled by Numbers

Not only have I Found the Cure, I've got all the answers!! So if you couldn't get to that tree moss or you can't get ahold of the healer- you have come to the right place!!

NOT!!

I should have known better than to post that cgm pic. D is always looking for us to open the door and I did just that. "Oh, you think you THAT was a petty picture.... How about THIS?".

I really didn't want to post this. I really don't want to tell this story.

I'd rather pretend it didn't happen. Drown my sorrows in a McDonald's coke and some Peeps.

But...

You need to know. I don't have all the answers. Not even close.

I'm not a doctor. I just play one in real life.

I'm a blogger. I tell our story because I know we are not alone. I tell our story because I hope that it helps someone out there feel like someone else gets it. To feel like they are not living this life in isolation.

I'm not an expert. I may not have been living with Diabters any longer than you. There's a good chance I don't know any more about Diabtetes than you do.

I'm a mom. A mom who is trying desperately to be a pancreas. A mom who, at times, feels like she is failing miserably.

Today we went to the endocrinologist.

You know where this is going...

Sweetpea's A1c 3 months ago was 7.1.

Today is was 8.0.

I am not happy. I am disappointed. And I am confused.

I know some of the possible reasons...

The doctor we saw last time felt that 7.1 was too low. She felt that Sweets had too many lows. And while I was thrilled with that A1c... If I'm being honest- she DID have too many lows.

LOW lows. Like 30's... Or 28.

We have fixed this. The lows she has been having recently have been in the 60's and 70's.

So that's GOOD.

But apparently, I underestimated the power of those lows.

Also, I know Sweets has been sick a LOT this winter. A couple rounds of strep. A bad stomach flu. All with ketones and high bg's. Not to mention the slow bg rise due to colds.

AND.... The dawn phenomenon. She's grown BIG TIME! She has grown 2 inches in 3 months!! (No weight gain- still at 35 whole pounds!) That growth hormone has been in full effect raising her bg AND her height in the wee hours of the morning.

So I get that there are reasons WHY.

And I realize that 8.0 is good for a child her age. In fact, the ADA recommends 8.5 for a 5 year old.

Still...

It stings.

As I sit in front the computer tonight I'm not sure I can remember the last time I felt this lost about what to do next.

Because even with all the crazy that has been thrown at us the past few months, I thought we had responded to it effectively. I felt like we had been making good progress with prebolusing. I thought we were headed in the right direction.

And I feel like I just found out the direction I've been walking in was totally wrong.

I know you can't live your life based on the numbers. I know the numbers are just a guide to tell us where to go. I know that it's just a number - and in no way a reflection of my pancreating ability.

Still...

It's a number that means so much.

It's a number that tells me that my daughter's eyes are safer.
It's a number that tells me that her heart is safer.
It's a number that tells me that her kidneys are safer.
It's a number that tells me that her limbs are safer.
It's a number that tells me that her life will be longer.

How can THAT be just a number?

How can we not feel a little sad when it's higher than we'd like or joyful when it shows tight control?

We can't.

All we can do is pick ourselves up, dust ourselves off, and keep on plugging away. Keep on reading and researching. Keep on blogging. Keep on advocating. Keep on putting one foot in front of the other.

And keep on working on those carb counts, or basal rates, or carb ratios, or ISF's...

Because when you live life with Type 1 Diaberes, you DO live a life ruled by the numbers.

Like it or not...


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30 comments:

  1. Hallie, I'd choose you to be my parentcreas any day! Keep on keepin' on!

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  2. Very true! Our lives are ruled by numbers, no matter what anyone says...

    I totally get what you are saying, and I know how you feel right now
    :( but brighter days are ahead with numbers that will settle!!

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  3. So glad you kicked those low lows to the curb even if it brought the A1c up a bit! You're doing a fantastic job as a pancreas!

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  4. I know how you feel...Charlotte had a higher A1c than what I expected (and would have liked) at her last endo follow-up...I had a sinking feeling in my gut after I heard it. I hate that we are truly ruled by numbers (carb counts, BG readings, A1cs, etc)...it stinks! Despite it all, you're doing a great job as her pancreas!

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  5. Aww..we all have those every now and then. It'll be better next time. Just think, you had to worry a *little* less about her waking up every morning. Doesn't that put it into perspective? : ) Sorry..don't stress yourself. We rate you a 7.0 for effort! : )

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  6. We had our endo appnt today too. Bryce's a1c went UP to 7.9 & even though the dr was thrilled and didn't want to make any changes, it bummed me out. I really felt we were doing better (except for those dang colds!)

    Apparently the long term risks associated with high bgs is low in young kids (really not an issue till puberty). The low bgs is what they worry about because the potential for brain damage. That is why we run them high. I try to keep this in mind when I see numbers I don't like.

    So like you, I will keep putting one foot in front of the other and do whatever I can to be the best pancreas for my kid.

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  7. Sadly we always judge ourselves by these numbers. Buuuut you got those bad lows away! Thats amazing mama, so even though its higher that 8 is healthier than that last 7.1 because of all those lows.

    Just look at yesterdays pic if need be...cause you need to remember how awesome you are!

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  8. I loved the part where you described the lower A1C number:

    "It's a number that tells me that my daughter's eyes are safer.
    It's a number that tells me that her heart is safer.
    It's a number that tells me that her kidneys are safer.
    It's a number that tells me that her limbs are safer.
    It's a number that tells me that her life will be longer."

    You said it perfectly Hallie. And, I know you are doing the best you can...And, I know the 8 is a fine number...And, I know that it stung. Been there...same-same. (((HUGS)) You are one heck of a pancreas sistah!

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  9. You are awesome Hallie! In addition to your awesome pancreating skills you are doing so much to make us all better D-moms and dads. I have learned so much from you and have been really inspired to do more. I always think of you on the days that I just kind of feel like existing. I think Hallie would be taking this opportunity to advocate about T1 or educate people who don't understand. Just wanted to say thank you for all of that and let you know I appreciate it. And your Dex pic does show that you are a rockstar pancreas. And congrats on getting rid of the LOW LOWs. Those are so scary! (((hugs))) to you this morning!!

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  10. You are doing a great job!

    An A1C is just a second opinion on how things are going. It helps us step back a make little adjustments that we didn't even realize we needed to make.

    It's hard to embrace them as information, and not a grade, but they are just that. One little piece of the big picture.

    You rock! :)

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  11. I think you are doing an awesome job... remember D doesn't always play fair. But I do understand feeling badly about athat number, especially when you feel like you've done everything in your power to try and achieve good results.

    And look at the positive, you got rid of those scary lows which are so much worse for her than highs at this point.

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  12. Looks like you and I were both blogging it out this morning! I felt the disappointment yesterday myself when we got our a1c of 8. I have to work really, really, REALLY hard to keep it all in perspective and remember that I AM doing my best and that an 8 is nothing to feel badly about. You are a fantabulous pancreas, don't you forget it!

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  13. Hallie -
    I agree with Rayna - 8 is a fine number! Much better than 28!
    You do so much right and your daughter has grown 2 inches to prove it!
    Be proud of your accomplishments as a pancreas. Diabetes or not, striving for perfection doesn't make us better, it makes us feel worse!
    Embrace the 8, be happy you've prevented all those nasty lows, and give yourself a break - You desdserve it!!

    GREAT JOB

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  14. hallie-

    you are doing a fantastic job! it is just a number, albeit an important one. keeping a steady a1c for a kiddo is damn near impossible. too many variables.

    just do the next thing. hugs!

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  15. I think you are right - you can't not feel sad, but:

    - you know the reasons why and less lows isn't good, it's GREAT!
    - let's put this sicky winter behind us and move forward without that added obstacle in the D regime
    - As you said, 8 is just fine and you addressed the issue you were supposed to. So now, just slowing chip away at things, one at a time and you'll see the 8.0 decrease little by little. You are in a great, safe position.

    Not what's with this you don't know what to do next thing? Weren't there any recommendations on a place to start from the doc?

    Lastly, you are doing everything you can for your little sweetheart to keep her safe and healthy and you are indeed doing a rockin' job. Don't forget about that recent graph! Let's focus on that!

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  16. Hallie, I SO feel you. Last week, when Liam was in the hospital (for the SECOND time this month related to a respiratory virus- go figure- we found out that his A1C was up from 7.4 three months ago to 8.5, and I just about threw up.
    I *know* he's been sick non stop for the last two months with high BG's and needs that change drastically day to day, I *know* he has grown 2 inches in the last 3 months, and I knew it was not going to be pretty. It didn't make it any easier to swallow.
    I kept feeling like they were judging me, not wanting to listen to what I knew he needed in the hospital because it doesn't seem that I am taking care of him very well. I kept wanting to scream "I'm not that mom!" When it is so important, and it does consume so much of our lives, it is so much more than just a number. Hugs to you.

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  17. I totally understand your disappointment, I really do. Bee's last A1C was 8.2 and I cried right there in the office. But I was reminded by so many of you amazing moms that we are doing the best we can! You are doing an awesome job and getting rid of the lows is a BIG deal! You're doing great! You are a wonderful mom and pancreas. Just remember that.

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  18. Wow we could be living parallel lives. My little one's went up fro 7.5 to 8.2. I just sat in the parking lot and cried. I felt like I was failing her. We work so hard and diabetes always has the real control... Or so it feels this week. Hang in there and we will too!

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  19. Please don't beat yourself up. We all do the best we can. Our nurse practitioner gave me the best advice after Hannah was diagnosed. She said, "Don't stress over the numbers. They are pieces of information that tell us what to do next." Still, it is hard because the numbers do have meaning and purpose. You are doing a fantastic job and I think you are a great pancreas in real life!

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  20. The thing is, Hallie . . . you are right! And, so is your Endo. There is no balance and THAT is what we seek. Well, taht and peace of mind, but I am much more likey to give up on peace of mind than I am on balance. We seek. We strive. We hope. We pray. We write. YOU are awesome at all of these. The number is a benchmark . . . repeat . . . . repeat . . . . repeat . . .

    love you - amy

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  21. I'm knew to the being a parentcreas & I have felt all of those emotions so much, over the last few months. The first few, I was trying to get used to everything & kept thinking as soon as we got the hang of it everything would be "controlled perfectly". Only... it hasn't and it's hard for us Mom's not to have it reflect directly on us, it's so easy for me to stew over it & wonder where I counted wrong when she's high, how did I do it wrong? Those numbers directly affect our life and you're right when there's so much riding on those numbers. Thank you for your post, it's nice to know that others are going through the same thing & makes me feel... not so crazy after all. :D

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  22. Hallie - You're doing a great job!!

    Our last A1C's were 8.0, 8.1 and 7.9. It was pulling teeth to get that 7.9 with all the colds and growth spurts. We even went on the pump in there, everyone said we ould see a big drop in the A1C, not.

    The only 7.0 we had was during our honeymoon when we had a lot of lows. It is hard work.

    Hang in there.

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  23. My thoughts... You have ONE A1c at 8.0, after eliminating lows in the 30s; your norm is in the 7.0s. Which reflects ONE three-month period of time. And the growth spurts during the 4am thru 7am period of time, when most of us do finally get to get some shuteye, after the 2am or 3am checks. The increase is perfectly understandable and TEMPORARY. Stress on the word "temporary." It will be lower, I know it. If your daughter generally trends toward the low to mid- sevens, I think she will continue to hang out there, for the most part. Next time Dawn phenom rears it's ugly head, set an alarm for 4:30 or 5am but if you are like me, that is the one time period you will find difficult to cover. If Dawn P keeps up, though, I know, like me, you will get up and cover it, once you are sure of the pattern. You are doing a great job; but since you are not a robot, you do have to sleep sometime. Next time will be better, you'll see :)

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  24. We had an 8 not too long ago also, so I know the sinking feeling. Even the Dr. reassuring me didn't do much to make me feel better. Now we're dealing with low lows and need to do something, but I'm dreading a swing in the other direction. In other words.... I know how you feel.
    Yvette

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  25. You are doing great! We only hope to get into the "8's" at our next endo.

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  26. We're in the exact same. oat as you. Three months ago we had a "decent" a1c, but at the cost of too many lows. Tue is our next appt, and I have no idea what we'll see.

    Sometimes all we can do is keep on keepin on. You're doing everything right, and it will pay off for your daughter.

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  27. I'm missing you. Are you sick? Are you out of town again? You have to post soon! ; ) Heehee Hugs! Holly

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  28. I feel your pain, like so many other Moms that have posted before me. I was in emotional pain after our last quarterly appt because I felt like I've done everything to stay on top of it...CGM, pre-boluses, post meal boluses when I didn't like her 2 hr post sugars, and an insulin pump. Then, I highly analyze blood sugars. My former job job was a financial analyst for heaven's sake. I set myself up for a 7.0% going into that appt and was I sadly mistaken...but we are human and ultimately I realize that I can't play God, and instead I'll put my trust in Him that he will allow me to do this to the bet of my ability and with a super toddler that is very understanding. All of that to say, I know what you mean, but isn't it nice that we can vent to each other? In fact, I was on Facebook chat that night after my daughter's qtr appt, with Laura from, houstonwehaveaproblem, and I am so grateful for her. You cant help the illnesses and growth spurts. I admire you for how you handled the stomach flu! You are amazing!
    Amber

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  29. Everyone has already said everything that I wanted to say. I love you, I love Sweets and I love your blog! You are such a great mommy, pancreas and writer.

    I'm so behind on blog reading and am really enjoying catching up on yours.

    This was a great post and I am so happy you've kicked the lows to the curb.

    Heart You!

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