Wednesday, April 6, 2011

endo appnt

Walking out of the doctor's office, I looked outside. The weather was a direct reflection of how I was feeling. Everything was gray, wet, cold...overall miserable.
I am sick of this weather! I am sick of how everything is turning green (and I don't mean the things that are supposed to be green like the trees,etc. but things like the roof, the driveway, our car) I am sick of the mud, sick of jackets, sweat pants, rain boots.
Gloomy and depressing.

This appointment snuck up on me. I can't believe it had been 3 months already.

We were running late. I couldn't find parking. When I finally found a spot, I hear "MOM, I feel LooooWWW!" coming from the backseat. We are already late and I really just want to run up to the doctor's office (afterall, Dex says 79 and straight) But seeing Bryce's limp body try to get out of the minivan, I stop and test him. 49. CRAP! 2 glucose tabs and we make our way to the clinic. Late but we made it.

7.9

I feel like giving up....what is the point?? No matter how hard we analyze his numbers, we just can't get it right. He gets a cold and his numbers raise, he recovers and we can't get his numbers high enough. One day he is bouncing off the walls, the next he is building with Legos or reading all day. Even if he did the same thing each day, ate the same foods, did everything identical...it STILL would not be predictable!!

My head hurts. I can't think straight anymore. I think all my brain cells have retired. I swear, I used to be really smart. I excelled in math and science. Now my head is filled with carb counts, bg numbers, trends, insulin to carb ratios, basal rates, glycemic indexes, combo boluses, meal times...and it is getting all jumbled so NOTHING is making sense.

Excuse my blank stare.

What I need is a vacation. But of course THAT won't happen because we have a child with D....nobody wants to take on that responsibility for us. It makes me sad. Very sad...and ENVIOUS of those that can get away (those that really don't NEED to get away but CAN, so they do.)

no changes

So our A1c increases but the endo has no changes to make. He feels we are in the range we need to be for a boy his age...under 8.5%. But that isn't good enough for me. I want him to look at our logs and say, "YES, you need to change this and this" and voila, all is perfect! The "good job" and pat on the back just isn't cutting it...I am not buying it.

What to do now?

rant over


18 comments:

  1. We were higher for our A1C. I think 8.2, and still they thought that was great. My son's 4. I know it's hard on the blogs not to want the best, esp. when you see so many moms doing everything to get those good numbers. But, what I think is that this is a time to work out the kinks. From what I understand, the kids aren't doing damage to their bodies with high blood sugars at this age. So, it gives us some time to get things right. Thank God for that, right? This sounds kind of rambling -- sorry!

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  2. ((hugs)) I know how you feel. I want answers too. I want a SPECIFIC plan on how to get there. I want tweaks, changes...I WANT SOMEONE TO TELL ME WHAT THE HELL TO DO!

    And unfortunately, there isn't much for us to do most of the time. We are at the mercy of their little, pancreatic-impaired bodies. I get the feeling you are/were a high achiever like me in high school - always got good grades, etc. Dealing with this is so hard because it's something, no matter how hard we try, we won't be "perfect" at it. Heck some days we won't even be good at it! It is so frustrating to know that we can't fix it.

    If it makes you feel any better, our endo appt. is in 2 weeks and I KNOW we will be higher than our previous 7.6. I've been looking at the averages adn I think we'll be hitting the 7.9 range as well.

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  3. No a1c number is ever going to be 'good' enough for us stand-in pancreases. Nope. We just can't do as well as teh body can on it's own. Nope. All we can do is to take that next step forward and move on . . . . steadily . . . lovingly . . . purposefully . . . until a cure is discovered.

    Spring has sprung and all the muck along with it. So sorry your mood is as gray as the skies, hon. Tomorrow is another opportunity and WE will all be moving along with you :)

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  4. I'm so sorry, honey. Tho I haven't a clue what all this is that you're going through, if you ever need an ear to scream into or a shoulder to lean on, call me or come by. :) I'll be there for you any way I can.

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  5. Oh yes the weather is getting to me too! Today we have had hail and thunder. I think that our Endos are pretty good at what they do. You are doing a great job and if there were something you should change he would have told you. I am praying that you find just the right person to watch the boys so that you can get away for a weekend. (hugs)

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  6. UGH...same-same...I know these feelings all to well. It is hard to not have reliable, stable effects from all of our pancreating abilities. You are doing a great job. I totally understand your frustraions.

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  7. Unless endo was on call 24/7 to analyze patterns, endo can not do as well as you can, who are attentive to his BGs every three or four hours round the clock. What patterns there are to be seen, I'm sure you can see them. You can't see all the random high and low BGs that are going to happen, regardless of the usual daily pattern. And, speaking of "daily patterns," wouldn't it be great if those patterns remained the same and only had to be tweaked by the endo every three months? But we all know that won't ever happen. So trust in yourself; trust in your abilities. It takes a while to learn this. That you are good enough. That endo can give you suggestions, but you will make the determination. Because you do know best. Believe it! P.S. Yes, that is a good A1c for an active growing boy that age. There are times he will be more stable; times less. You do your daily and weekly analysis and adjustments and respond to the many random BGs over which you have NO control. You are doing a great job, and don't tell yourself otherwise.

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  8. I can't tell you how many times I've written this exact post. You are not alone. We all go through times when we feel like giving up. BUT you are an amazing mom who is raising three beautiful boys and you are kicking ass at it.

    That is a great A1c btw. Justin's "goal" is 8.0 and he is 10 years old. Bryce is young and unpredictable. Hang in there mama... you can do it :)

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  9. Oh my gosh, you can read my mind! I have felt this way so many times. I can't think clearly about anything anymore...and once I would have considered myself a very organized person. Diabetes just plain stinks. It is something that I WANT TO MANAGE. I WANT TO ORGANIZE. But it is impossible. It doesn't allow us to do that. Just when we think we have it organized...it scrambles itself and we are back to the drawing board. You are not alone my friend.

    Give yourself a pat on the back for all of the hard work that you have done to keep your sweet boy alive in the last 3 months. That A1C is just a number!

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  10. I think we all feel the same at one time or another. I cried right in the office at our last Endo visit because the stress, constant worry, micro-managing to stay on top of things and serious lack of sleep resulted in an A1C of 8.2. I felt the same way you do right now. What's the point? But we keep on doing what we are doing and trying our best. We have to work through illnesses and, in my case, impending puberty (gah!!!) and we just try as hard as we can, even if it doesn't always come out the way we hope. Just know you are not alone with your feelings. You have a HUGE support group in the DOC and we all understand how you feel. Big (((HUGS))) to you. You are an awesome pancreas. You really are.

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  11. There is no perfect! Show me a perfect parent pancreas and I'll show you a liar. Children and bouncing numbers are par for the course. All you can do is what you are doing. Look forward and focus on what you are doing right. You are putting a lot more effort in than most of the parents with children with diabetes. Your endo is happy with that number because he/she has scores of other patients not even close to that! Give yourself credit where credit is due...you are doing an amazing job of taking care of your son. You totally are! All my love to you!

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  12. We are a1c twinikies!! Seriously - I just posted about this in February so I KNOW just how you feel. What got me out of my funkiness was the wonderful comments from the DOC. D Mamas rock and we are here to cheer you up!!

    I seriously know how you feel - - - nothing ever stays the same over here either. I get it.

    And honestly 7.9 is a good a1c for our boys. It's just that we have higher expectations of ourselves.

    I too envy people that can 'get away' --- I vaguely remember what that means?!?!?!

    Love you, girl!

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  13. yea that's supposed to say TWINKIES not twinikies! :)

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  14. I read this post earlier today on my cell phone and left you a comment, using my cell phone. But I don't see it here! If this is a duplicate, I apologize!

    Been there, felt that! I can relate. Our last A1C was higher than I'd expected. I felt so defeated and exasperated. Sometimes, a good A1C seems elusive...no matter what I do, I can't achieve it. Other times, with the same effort, I achieve an awesome number. I just don't get it...

    Keep doing what you're doing! You're taking excellent care of your little boy! Don't let one number make you think otherwise!

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  15. I am right there with you Denise! I just posted about this myself as Addison's A1c rose to 8 from 7.4. And, as much as I really am ok with him being in the appropriate range for his age there is no doubt it makes you feel like all your hard work was for nothing! 7.9 is nothing to be ashamed of..in fact you should feel proud. You are doing an amazing job!!

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  16. Boy do I feel you! Our last A1c- 8.0. WHAT?!? I was NOT expecting that. To go from 7.1 to 8.0..... Crushed. I headed the same things- it's good for a child her age.... But I want better. And it's so frustrating to not be able to figured out the secret.

    I so relate. My brain is on overload. My brain is mush. What the hell happened to me?!? I need a vaca, too. And get away??? Ohmygosh.... Even just for a day.... So incredibly jealous.

    ((hugs)) no advice - just "I get it".

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  17. Has the pump given you anymore freedom to "get away"?? We have been dealing with D over a year with my 6 year old daughter and nobody has bothered to learn how to take care of her so that we can go do anything at all. I know they are afraid and it is a lot to absorb, but I am still hurt that our family has not stepped up. Should I be??? Maybe nobody else has this type of support either? Not that we want to run around all the time without the kids, but once in a while would be nice.

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  18. that's how I have been feeling too. I was starting to feel confident and not being as diligant with carbs and then started feeling like I was letting her down and being sloppy. still adjusting but feeling like not many understand the extra burden added to our already full plate. you are not alone!!!! www.type1diabetic3yearold.blogspot..com

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