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Just a vent

Discussion in 'Parents of Children with Type 1' started by DsMom, Jun 19, 2012.

  1. DsMom

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    I'm tired...diabetes tired.:( Just going through one of those phases when I feel like I'm not doing anything right. Things that worked before are not working. We've had lots of events with cake lately...I used to be pretty good at bolusing for cake...but the past couple of times he ended up in the 300s. Seeing 200s and even 300s way too much. Keep fiddling with his settings...can't get things right. Have had several rollercoaster days of overbolusing for highs, and then having to treat lows.

    Sigh.:( I'm just tired of thinking about it all the time...thinking that I have the answer and getting proven wrong. And my son pays the price. I know it's just a matter of continuing to try until I find that "sweet spot" where his rates all align and all is right with the world.;):rolleyes: I'm not asking for technical advice. And I feel so selfish because I know I'll only have to deal with this for a limited time...and my son will deal with it until there is a cure. So I feel bad, and then feel bad about feeling bad.:rolleyes:

    And then, we're so far into this (4 years in September), that everyone figures that I have it all figured out and we've settled into this a long time ago. They figure I am the "expert" with all the answers. I was so shocked a week or so ago when visiting my mom...who has 3 grandchildren with type 1, AND had a sister with T1. Daniel had a low, which wasn't that bad and I treated with the usual no fuss and matter of fact manner. My mom said, "Shouldn't he be evening out by now and be more steady?":eek: Granted, my mom never learned how to take care of her grandkids with T1...and her mom and sister I don't think EVER knew how to manage it. I was pleasant and explained that there is no real "evening out" for T1 and there are constant ups and downs you are always managing. Which was met with an "Oh."

    Just so discouraging. People, even those close to you, assume you have it all in hand and are just breezing through every day blithely doling out the right answers and keeping your child's BG at 100. And they really don't expect that you could still be upset or confused or angry...because it's been so long. That adjustment phase is WELL behind us...right??:rolleyes: So no one asks how you're doing or feeling about D...because you should be FINE with it by now.

    Sorry to be a downer. But, as you all know, this is the only place I can come and know that people WILL get it. And it helps just to get it out. So thank you if you read this far.:cwds:
     
  2. Melissata

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    I get it for sure. The way that we manage diabetes these days is far different than what people did before, and no one knows how difficult it is unless they have done it. I know that there are certainly times when I feel like nothing that I do is working. And then I get it right and all is well for a while for the most part.

    I struggle all of the time about what is going to happen in the future for my daughter, because she is not capable of doing any of it on her own. I'm just now starting to try to really try to convey it to the people that would be overseeing her care, if something were to happen to us. Everyone thinks it is all a piece of cake, because we know what we are doing and have everything possible to help manage.

    On the other hand, my son has had diabetes now for over half of his life, he is 32. He has a great job, and travels all over the world. He lives alone, and manages to make his diabetes a small part of his life.
     
  3. TheLegoRef

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    It's nice to be able to vent once in a while. :) Let it out. :) And *hugs*.

    I know how you feel. The last two months of school, about every other day, my DS would drop low about an hour before lunch. Fine at breakfast, fine at 2pb (or even high or too high!), and then 1.5 to 2 hours later, he's low. WTH? He'd be like 140 at 6:30am, 150-290! at 8:30, then, with no correction, but still the same 19 carb snack he's had every morning the whole school year, he'd be in the 60's by 10am. Finally I had to tell my poor son to try not eating between breakfast and lunch. Unfortunately that worked. So for the last two weeks, unless there was a party, he didn't eat. I'd tried everything. Changed basals, boluses, made a snack bolus ratio, changed the ratios again. Breakfast went from like 1:8.8 to 1:12. Snack went from 1:11 to 1:20. Basals went nearly .250 for the morning at school. I'm convinced he was running 10 miles in the morning! *shrug* Whatcha gunna do? :) I'm not going to worry about it now, because by September, something will have changed, and we'll figure it out then.
     
  4. danielsmom

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    I'm right there with you..these last few weeks of school...pizza party after pizza party......daniel says he's doesn't want to be my experiment as I work on those two shots for those foods...sometimes it works, sometimes not and our numbers have been yuck poo!...I try to tell him I can do it all perfectly but Diabetes doesn't play fair ever!!...But so long as I see he is happy...I will keep trucking ahead. Just yesterday my husband, mom and I had lunch with family from Texas...the lates addition to the family is Michelle, married to my cousin, 26 and T1 20 years..we spoke last year when Daniel was first diagnosed..But yesterday I bombarded her with questions...she showed me her pump, how it works, I asked, she answered.....she is happy, healthy....just got her PH.D in Chemistry and moving to South Carolina for a new job...he husband adores her.. she looks forward to kids...She is in a good place and happy with her life...no regrets... She inspires me.....hang in there...and just know we're all here to give you support and extra strength when needed..
     
  5. anna-bananna

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    Hugs and well-wishes for getting out of the slump! :cwds:

    I have an idea of how you are feeling. I feel like I am in the need for a good D-rant, myself, but I don't even know where to start! :rolleyes: And we have only been doing this for 2 years! :eek:

    Part of what I have done is to slack off a little on record-keeping. I will get back to it after her quarterly appointment tomorrow, where I am dreading what her A1c will be. If I can just keep breathing through the appointment, hopefully all will go well, and I can get back to it with (hopefully) some renewed energy. I decided that we can't take a break from Diabetes, but I can slack off a little bit every once in a while to avoid total burnout. :eek: I hope. :cwds:

    Right now, I wish I could just flush D down the toilet and never think about it again. But I know that's not a choice, so I'm hoping it's just a phase that will pass! :rolleyes:

    Good luck and know that we are all in this too! We can do this! Yes, our kids will have it for life, but right now, WE are the ones who are carrying most of the burden for them so that they can have part of their life back! So, while they still need some encouragement and sympathy and understanding...so do we!!! The rest of the world doesn't get it, so we have each other to encourage and support us. :cwds:

    I hope things start looking up for you soon! :cwds:
     
  6. DsMom

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    Thank you all for your kind words of support. It really is amazing that just reading how you are all going through these days at times too can help me take a deep breath and feel better and ready to keep plowing ahead! That's what I miss in "real life," and I'm so grateful that I can get that support here.:) Even having a sister who is a D mom is not the same. Her daughters are grown now, and I'm sure she has different D worries, but is not going through the day to day management anymore.

    Being able to see my nieces with D is always helpful. D does not hold them back or define them in any way...both are happy, successful, and wonderful. My son is so lucky to have them as role models...and so am I!

    Thanks again!
     
  7. Turtle1605

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    I also found that backing off on all the journaling, spreadsheets and record-keeping for a while helped too (like the previous poster said). It's funny that it should be an obvious way to reduce some of the stress but I didn't think of it until I read it here!
     
  8. StillMamamia

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    I'm sorry. Sometimes it's all too much, people all too annoying, and we're all too tired, overwhelmed and and and...

    Hopefully you can step back and handle 1 thing at a time. Don't try to change everything at once. I always suggest (and, trust me, I'm no expert:eek:) to try to work period of the day at a time, starting with the nighttime, and working your way up to the daytime. It helps to not feel so helpless.

    As for people annoying you, well, that's just one thing I don't know how to deal with. I used to try to explain things, then I just started "hmmm, hmmm" and smiling and trying so hard to let things roll of my back (and I'd have a good cry at home or whatever:().

    Hang in there! D is a beast but we can kick it's backside sometimes. THAT feels good!
     
  9. Sarah Maddie's Mom

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    All I know, is that around our 5th year it just got harder. :( Hard to say why: her age, the absolute end of "honeymoon", puberty ... to this day I don't know, I just know that I felt clueless again and unable to keep her numbers steady at all for a while.

    Breathe. You adjust - start over - try new things. It's just not an easy task this, just not easy...
     
  10. JamieP

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    We have only been at this a short time as my 13yr old son was diagnosed at the end of April, but it is amazing how alone you can feel even among your friends. No one truly gets it unless they are living it. I have explained and passed on info to try to help those closest to me understand, but I'm still getting emails back with links to how coconut oil can control glucose,etc. I'm already tired of explaining and find myself not wanting to be around those in the nonT1 world. These on-line groups really do help.

    Also, I noticed that your T1 son has ADHD. My does too. He was diagnosed when he was 4yrs old and we have been through it all in that department too. Please let me know if there is anything I can do to help in that area.

    Finally, you should not feel guilty. It's a fact that right now, it is MUCH harder on us than on our kids. And I have already figured out that the answer you think you know might have been right when you thought it, but the problem is that we are chasing an ever moving target. I feel like we are like dogs chasing our tails around and around! It sounds to me like you are doing a great job- just the fact that you are thinking about it all the time proves it!! Hope you feel better soon!
     
  11. MomofSweetOne

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    I find the very loneliest D-times are during the nights when I'm feeling so far beyond exhausted and just wanting to sleep, but D throws a curve ball and I'm up for hours warding off lows or up every two hours chasing highs. Those are the times I just want to sob from the misery of it.
     
  12. MomofSweetOne

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    I find the very loneliest D-times are during the nights when I'm feeling so far beyond exhausted and just wanting to sleep, but D throws a curve ball and I'm up for hours warding off lows or up every two hours chasing highs. Those are the times I just want to sob from the misery of it. I have bad days sometimes, but nothing compares to the isolation of the nights.
     
  13. deafmack

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    You just reminded me that is something I need to do. Doing so can really help solve the mysteries of blood sugars that make no sense.
     
  14. DsMom

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    Funny you say that, because that is exactly what has been depressing me. I sit at the end of the day and look at the notebook where I keep his BG numbers...and those 200s and lately the few 300s are just staring at me like accusations! I really rely on that record keeping to spot trends and keep things in line...but I never thought of it as a source of my stress. Very good point...thank you!

    So true...for D and now the ADHD, too! Good point!
     
  15. JamieP

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    I think I felt sorry for myself more dealing with ADHD. It is very stressful and every time things had been stable for a while I would start bracing for it to fall apart again. We always stepped our way up to greater than the max dose, stayed steady there for a while and then had to change meds. Concerta was very good to us for a few years until we maxed out and now Focalin XR has been good. Interestingly, we have just reduced my sons dose for the first time ever! His friends told him that he was "less annoying now that he has diabetes". We, too, noticed an improvement in his behavior after diagnosis and then getting his sugars under control. Makes me think his behavior issues could have had an element of high blood sugar for quite some time. Maybe your sons behavior deterioration is tied to the higher blood sugars?

    Anyway, good luck and vent anytime!!
     
  16. FloridaMom

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    Ugh! I have a friend who has asked me SEVERAL times since Ryan was diagnosed if he will "grow out of it." I understand asking once - she doesn't know anything about T1D. After the THIRD time I just wanted to SCREAM, "NO! HE WILL NOT GROW OUT OF IT! YOU DON'T GROW OUT OF THIS!"
     
  17. Joretta

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    Amen! I need occasionally need to be reminded I am not alone. Someday's the frustration, sense of failure, and being tired is too much. My friends try to be supportative but they don't get it. Here is my only common link place for D. It is hard enough raising a child, but add in illness and my being a single parent it is a big rethink even though I would not change having my child as she is so tough and tries to be so good.
     

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