Got some things to ask…

Ok, I gotta ask.

What is up with the A1C secret?

How come NO ONE EVER SAYS WHAT THE A1C WAS AT THEIR APPOINTMENT?

When I read all 30 or so of the blogs that I have come to love…I never see the number? Oh! I get it, the grade card theory, the ego…I am right along with the D masses on hiding Dexter (CGM) when she’s flying at 300 or above. The graph from the last 6, 12, or 24 hours that looks like my 1-year-old son just scribbled all over the face of it!

I’m learning soooo much from all the bloggers, mammas, daddy’s, Type 1’s themselves. But I most learn from the “information” that is hidden in the stories. Joe running into the school…out of character and Mrs. Awesome catching on. Laim’s mom just flat venting, verbatim what I have run through my head many times since January. Hell I’m pretty sure it was Caleb on You Tube that gave me the confidence to put the first pod on my daughter by myself.  Sweatpea’s mom throwin’ numbers around like a champ, play by play giving me a visual of what next year may be like…and that it’s ok if it’s going to happen that way, because sometimes it just does.  Justin’s mom is good at descriptive writting…I feel like I’m there.  The Houston Family, need I say more?  Grace’s mom who says it VERY well on every post and we MUST NOT forget Reyna and Joe (again). Throwin’ it on the table all ugly and real…LIKE IT SHOULD BE! (I’ll stop here with the examples, 30 examples is excessive I think and I’ve already circled back to Reyna!) 
Now don’t get me wrong. I don’t expect everyone to suddenly divulge the A1C’s of their loved ones, but I have to admit sometimes the details of such things can make those who are new and old a little more reasonable in the expectations of the daunting D. Even Kerri only put a number out there when she was down to 6 during her relentless, perfection of blood sugars for the baby B-sparling! and she’s the TMI queen!
I was talking to a girlfriend the other night and mentioned how it is taking me some time to figure out why it is that people hide that they have diabetes. How for me…the more people who know that Ellie has it, the safer I think she is. The more we/she throws it out there…the more acceptance and protection she will ultimately receive. But it’s different for me I’m beginning to realize (I think). I don’t have it, I don’t experience it. I am protecting my child and everything I do relates to that premise. When she becomes of age, will she hide it? Will she be mad at me for letting everyone know? I HAVE NO IDEA! Being a mother of a person with Type 1 Diabetes changes everything I ever thought of being a parent…for the good most of the time. I appreciate more about her and my son. I value my marriage more, our family as a unit means something more than I think it may have. I complain only when there is pain and when I laugh I really mean it.
So I ask, what is the secret and why is it a secret?

Again, for me to just flat blurt this out I feel I must add some failures of my own, some of the things I would have never thought I’d admit or share with anyone.  Things I’m pretty confident you all will at the very least relate to. (I hope, otherwise I’ll look for the D SRS people to come knocking on my door?!)
When Ellie was getting shots, there were times I forgot to dial in the units and ended up poking her with no insulin to give…having then to remove it and start over. Not cool by the way. For the first 2 months that Ellie was diagnosed I sat on her sometimes to get the insulin in her, while she screamed no mommy repeatedly. When Ellie asks me why she has diabetes I tell her I don’t know, that no one knows. (that answer makes me feel like crap by the way) There are nights that I just trust what the DexCom says instead of actually testing…because I’m tired. Almost every day I want to quit my job so I can follow her around and make sure her numbers are in range…not necessarily for her, but because when I’m with her MY stress level is down.  I go almost no where without Ellie with me, and it’s justified in my head over 99% of the time.  I have tested the blood sugar of my son one time, when he was sick for the first time and I couldn’t stand to “not know”.  I have not shared my blog page address with one single family member or friend because I don’t know if they will understand.  (my husband has it, but I don’t know if he reads it)  Oh, and I smoke.  (leave it alone, I didn’t know that part of starting was having to quit…they didn’t say it on the side of the packages back when I started…I’ll get there!)

 So I guess really, no one has to give out their A1C number, but I would like some sort of feed back from those who know and those who think they may know.  This information may help me learn. Maybe learn about our future and the feelings of my little girl that I love more than life itself. Maybe learn about what I’m feeling too. 

So there it is my burning question (WAY overstated but with care I promise!)

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18 Responses to Got some things to ask…

  1. Reyna says:

    OMG!!! Read my post from today…I am laughing. Don’t worry, I’ll share when we get home from Endo, but Joe is usually a “high 6er”…a little low… Dexter has been helping us catch a lot of lows over the past few months, so I am hoping for a 6.8% to a 7.2%. I think Lora (from My Diabetic Child) has a running list of Justin’s A1C’s on a side bar. Some one else has them posted too. Do you think it would be a good idea for us D Mama bloggers to post them openly to help others? I would definitely do that…Maybe I should do a poll?

    I too feel like the more people that know of Joe’s diagnoses, the safer he is. Joe does not hide his “d”, but he does not really “advertise” it either. Any adult that comes in contact with him at school should be aware of “d” and should know “when in doubt, check it out”…

    The part where you had to hold Ellie down for shots…got to me. I have been there too. I have also had to cram sugar into Joe’s combative, low mouth and then hold his mouth shut while the sugar absorbed. This is not an easy life. Luckily, D’ mamas got each other’s backs.

    Great post.

  2. Too funny – We just got ours back! I’m posting ours today. And if you are on Facebook – people post freely on there! Usually right after the appointment. Also on Facebook I have been known to post the horrid 3, 6, 12 and 24 hour pictures of Nate’s DexCom. It isn’t pretty! I often compare it to a liar, liar pants on fire taking a polygraph!!

    No worries – – – I put it all out there.

    Ummm and for the record . . . The Houston Family, need I say more? Is that a good thing or a bad thing?? 🙂

  3. I posted a series of three posts this spring/summer about a very disappointing A1c (I thought for sure it had come down), what we did to improve it, and the result at the next visit. We brought ours down a whole 0.9 in 4 months. Our endo still wants us to work on it though.

    Maybe some people don’t share because they will feel judged. And we have to remember too that not everyone started at the same spot. If a child was at 7.0 when diagnosed, then maybe it’s been easier to keep them at a comfortable number. If a child was diagnosed with a 10.0, then that family may be working really hard to try to bring it down. Maybe the child is still producing a little insulin. Maybe the child has been sick. Maybe the child is going through puberty. There are so many variables that determine the A1c at any given time and that is why we shouldn’t compare ourselves to others or feel judged if someone else’s numbers are “better.”

    We don’t hide our daughter’s diabetes and she herself seems to announce it to the world. I know a few teens (who were diagnosed much later than my daughter) who hide it, but maybe it’s because they knew a life without it?

    I too tell my daughter I don’t know why she got diabetes. I tell her we didn’t have a choice in the matter.

    Seems like you are working through some things…know that we are all here for you and know what you are going through.

  4. Lorraine says:

    I think sharing one’s A1C is like sharing one’s weight. It subjects you to judgment. Nevertheless, I’ve seen lots of them out there and I agree that it’s valuable information to see how everyone is doing. How their doctors are counseling them. It’s like getting a 2nd, 3rd, 4th…opinion.

    I publish Caleb’s A1Cs and have given them to anyone who was interested. I have his history tucked on my TuDiabetes page.

    Thanks for mentioning Caleb. It always makes me feel good to know that people are watching them and they may even be helpful.

  5. Lora says:

    I do have a list of Justin’s steadily RISING A1C’s on my sidebar. I believe Tracy has the Superhero’s listed also(I think). I also post about some of them… but the title may not be obvious OR it is buried in a post that is much more fun to talk about 🙂

    Thanks for the mention BTW… you also had me tearing up about that last part. I wish we had a wise answer to the “why me” question. Unfortunately, we just don’t know.
    Also, please know that you are not alone with the sharing of your blod. I also avoid family knowing the name and address of my blog. They wouldn’t know I had one at all if it weren’t for my husband(he shared b/c he was proud… I, on the other hand, could have killed him). I wish they had no clue(not that they care) because then I would be free to post a lot more than I do… it would be great to loose the “filter”.

  6. Joanne says:

    I think I’ve posted Elise’s A1C each time we’ve had an appointment, mostly because it helps me to look back and see where we’ve been. I understand that some people may feel judged by that number, but as long as I know that I’m trying my best to keep Elise’s numbers “in range”, then it doesn’t really matter to me what people think.

    For example, one of the CDEs from our endo’s office got on me when she found out Elise’s last A1C was 6.6. She told me that it was way too low and we must be missing some low BGs. I told her it wasn’t possible because we test Elise at least 12 times a day (this was before the Dexcom), and usually 3 times during the night. She went on and on about it, but I knew that her low A1C was due to tight control and NOT missing lows. It still made me want to throttle her though.

    BTW, I sometimes go by what the Dexcom says instead of checking too… sometimes this Momma pancreas needs a break.

  7. Reyna says:

    OK, I added a box on my sidebar for Joe’s A1C’s. Today’s was 6.7%. A few of us shared them on FB (I did it in honor of your post and Heidi Timm posted hers…and Laura Houston too!). You started a revolution baby! 🙂

  8. OMG!!! Reyna! How did we basically post the same thing? Ha! Thank you ladies for the words…apparently I need to dig a little more in all the blogs (sorry ’bout that). I think the reason I’m curious is the reason Lorriane said. I have no problem questioning my endo. To a fault sometimes. But when you hear that there is a “too low” A1C and “we are shooting for this number based on her age”. One sort of wonders what up with that…why is ok for her now but not in 10 years? I think it’s that awful reality that you have to face. She has diabetes and she will have repercussions for that. Period. At our last appointment I asked him why her target was 180. (I mean did he just pull that one out of his butt?) Why not 170…or 167? He said that it was a safe number, that the body begins to “spill sugar” at 180. This hasn’t really been sitting well with me. I believe this man with all my heart, he knows what he is doing and he is well known and respected around our parts. He also treats Ellie and I special…that matters, a lot. But now I have these visions of her spilling, killing her kidneys, overworking her body’s system every time she is over 180 (which have been constantly for the last 5 or 6 days. BAD! I like her at 140, he is a bit hesitant though and I try to follow his lead, he’s been doing this a lot longer than me! But when I read the mama D blogs I get a wider picture, it actually helps me ask more questions and get more useful details from him. Guess the information from everyone is about the old saying, “Know what you don’t know!” When you know what you don’t know you can ask better questions and get the answers that are valuable instead of just sitting around like deer in headlights hoping your doing it well!

    • Question everything!! We left Children’s Hospital because they wanted Nate’s A1C to be something like 8.5 – 9 and at first I was like ok. BUT then I was like WTH – – – no way. He’s 2 and his target range is 90-120 during the day and 160 at night. We have DexCom so I am good with letting him ride a little low because I know I will almost always catch the lows with Dex.

      After we left our 1st practice – Nate’s A1C has dropped over a full point.

      Nate was 14-months when he was dx – – – he is going to have this damn disease his ENTIRE life. I can’t let him be high – – that’s my choice. I totally respect all the different D styles out there — we all have to do what we feel is right for our own children.

      BTW – so happy to have found your blog. I need to dig around a little more to get to know you a little better. 🙂

  9. Sarah says:

    I think because my husband as a T1d doesn’t like that people who aren’t t1d hold so tight to that one number as an answer to what is or isn’t going on that I feel it’s not that important. I know that there are so many other things to watch for than just an A1c. That said, my husband’s A1C’s have rocked…Isaac’s are where his need to be for his age…but again, I just think it’s not important for others to know it. My husband once explained that it felt like a number was printed on his forehead that others then would assume meant something. As if a 6 meant he had it all under control and if he had a 9 that would mean he was a mess….know what I mean. I think for him he wants people to hear him without thinking of a number, hearing how much work it is for him but how it hasn’t effected his abilities to do whatever he wants…
    Not sure if that makes sense. But for our family publishing A1C’s would be like publishing weight, BMI, blood pressure…etc. Only necessary if we need additional guidance.

  10. Pam says:

    It’s funny, I noticed the same thing when I started reading these great d-blogs. The thing with me is that Grace’s A1c is just a number. I try not to celebrate too much when it’s good (though I do admit a LARGE sense of relief) and I don’t get too down when it’s bad. The crazy thing is that her last 2 A1c’s have been vertually identical: 6.2 and 6.4. But the second number came after 3 months of horrible numbers. It was not at all a refection of her daily control. It just meant that she had an equal amount of lows to balance out the highs (not good).
    That being said, I may consider putting the widget on the side of my blog as well. May as well put it all out there!

  11. Heather Brand says:

    I agree, we shouldn’t hide them. I usually post them on Facebook. I know I wrote about our last endo visit last month because we lowered it so much. I like reading about other D Mamas experiences because it helps me learn from my own, even if they are different.
    I’ll add a tab for mine. Now lets hope I can find all them back to Lovebug’s diagnosis 18 months ago!

    I wish my family didn’t know I had a blog. Then I could complain about the lack of support they give me, but I can’t because they see it. Boo.

    I’m so glad us D Mamas have each other for support!!

  12. Heidi says:

    Good question!

    Before I get to my answer, I have to tell you that we had to hold down a screaming Jack for injections way back when, too. That was so awful, but what’s a D mama to do?

    Also, I am like you in that I think the more people who know about Jack’s diabetes, the better off and safer he’ll be. But, I have told very few friends and family members about my blog. I also like to keep Jack with me as much as possible, because it’s easier for me. I’m less stressed and then I know for sure that his diabetes is being managed properly, which leads me to your question…

    I know Jack’s diabetes is managed well and is under control. I’m the one controlling it, and I’m a type A perfectionist. I’m on top of his D care, day in and day out. His A1C, however, seems fleeting. It’s like Reyna said in her post, you get the A1C and then the slate is wiped clean. You start over, but day in and day out, nothing really changes. I’m always chasing numbers, always testing, always logging numbers, always analyzing, always doing my best. I work my tail off to achieve the best A1C possible. As long as his A1C is within a good range, then I don’t dwell on it. I move on and keep taking care of my little guy.

  13. Jen says:

    Addison’s A1C is not a secret, but honestly, I haven’t felt like I wanted to publish it either. I don’t mind sharing my defeats as well as my triumphs on my blog but for some reason the A1C is different for me. Since the beginning I was told the A1c is just a number and that I should not let it rule my life. And for the most part I don’t. I suppose not focusing on it when I write my blog helps me to keep it in the back of my mind! I don’t remember exactly what Addison’s past A1C’s were but I can tell you he has consistently been in the mid 7’s until we went on the pump and then he was running high for a while. His last A1C was 8. It felt like defeat especially after a very frustrating beginning with the pump and seeing high after high after high. We have an Endo appointment this week, tomorrow in fact and I may just do an A1C post – good or bad!

  14. Meri says:

    I posted this on Jen’s blog…but I will here too. I haven’t posted my boys A1C’s lately because they have been in the 6’s. I know that it (usually) isn’t possible for a newly diagnosed child to have those A1C’s. It is very unrealistic, (at least it was for us,) and I don’t want a mother or father to feel like they are failing if their A1C’s are higher. Most of the people who read my blog are newly diagnosed, (within 1-2 years into this.) We have had high A1C’s, hell, my first son was diagnosed at 8 months old and for the first 6 months our goal was to keep him between 200 and 300! Everyone’s diabetes is different. Some childrens blood sugars are easier to control than others. There are so many factors! For example: My oldest is hitting puberty. I’m ready for the glucocoaster…things are going to change. I don’t judge. I hope everyone feels safe to divulge their numbers. But like Lorainne said…it is a bit like showing your nakedness. For some, sometimes the number is just too personal to share.

  15. Wendy says:

    Thanks for this post!

    When I first began to connect online, I found myself feeling as if I was the WORST pancreas possible for my daughter. It wasn’t until I actually PUT IT OUT THERE that she was 8.9% and I didn’t know what to do that I realized I wasn’t alone.

    That’s when people came out of the woodwork to help me. I felt incredibly loved. When it was down a full percent 3 months later, people cheered. When it was under 7.5% for the first time, I was surrounded by cyber Hi-5’s…..we did it!!!! She hasn’t been over 7.5% we made it to that threshold.

    I do post A1c’s from time to time…when I think about it. I usually always post on FB since I can do it from my phone while we’re still in the office. It’s been over 5 years for us….sometimes it feels like just another routine number…..but sometimes I also feel like throwing it out there could make another D Mama somewhere feel as if she’s letting her kid down if their number isn’t in the 7’s.

    I want my blog to uplift, encourage, love, and support D Mamas everywhere….I’d feel awful if someone felt defeated.

    Maybe I’ve got a topic for a post next month, after our next appt 🙂

  16. At my last endo’s appointment my A1C was 7.6%, up from 7.5% earlier in the year. I’d had some horrendous lows earlier in the year, so I don’t mind it being at this level. Closer to 6.5% tends to give me lows that are hard on all of us.

    Welcome to the D-OC (Diabetes Online Community). I’ve added your site to my Diabetes Search engine. You may find this useful as you search for information relating to diabetes. It only searches on sites that I’ve chosen and I look at each one carefully beforehand.

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