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Your biggest problem with diabetes....

Discussion in 'Parents of Children with Type 1' started by StillMamamia, Nov 23, 2007.

  1. StillMamamia

    StillMamamia Approved members

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    Besides everything....

    Just curious to know what's your toughest challenge in dealing with diabetes:

    Mine is not knowing my son's bg pattern....we test often, but his bg changes from one day to the next...maybe because he's still young.

    We still are not on a CGM, by the way...it will come, and hopefully help!

    Thanks for your comments!

    StillMamamia
    Proud Mom to a VERY BRAVE 3 year-old, dx 10/2006
     
  2. Beach bum

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    On top of the usual stuff, I think my biggest frustration right now is that Abby is so insulin resistant in the am. We've tried so many different scenarios, and she still hangs up high, then comes down by 11. The worst problem is that in the am is when she has more of her challenging assesments/assignments at school. Thank goodness her teacher is T1, and fully understands the situation.
     
  3. frizzyrazzy

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    mine right now is trying to get a proper basal. I'm toying with going for 40% basal/ 60% bolus to see if that would work. Overall coverage and averages are spot on - we're in range about 70% of the time. BUT, he still needs to snack in the morning or he goes low. He still needs to snack before bed or he goes low. I'd love to conquer those.
     
  4. ROVERT81402

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    Mine is night time highs. I mean, they haven't been too high, but whenever he is over 220, he wets the bed. He is such a sound sleeper, I don't think he relaizes he has to go :(
     
  5. wilf

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    Thankfully our biggest problems to date have just been:
    - finding the big amounts of time needed to learn about and manage the diabetes
    - the fact that we seem to know more about D management than the doctors and nurses who are supposed to be supporting us.

    We have not had any really bad lows. The only highs that we couldn't get down right away were due to the insulin going bad (from getting too warm or cold), and each time once we figured it out and switched to a new insulin we were fine. The good thing about being on injections is we never have ketone/DKA issues.
     
  6. Mama2H

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    Ours, it seems. is a bit different. Our biggest problem is the emotional impact. The wanting to go to how it was before. Not wanting to have to worry about it any more. My daughter still feels isolated from her peers. Just being tired of being tired. I think this is one of the biggest chalenge since my daughter is old enough to remeber what it was like to not have D :(
     
  7. emilyandkevsmom

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    I would also have to say the emotional impact. I worry so much. I worry who will take care of her if something was to happen to me. I have absolutely no support from husband, family, friends, etc. I have tried to teach/educate them without shooving it down their throats. I think part of it is they are scared. I do not mind one bit all it takes to learn and take care of her. What if I get sick, injured or even worse????
     
    Last edited: Nov 23, 2007
  8. Tori's Mom

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    The unpredicability. I am a "bit" compulsive and I want to "master" Diabetes and there is no "mastering" Diabetes because there are too many variables and inconsistencies!!
     
  9. StillMamamia

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    Your biggest problem with diabetes...

    Thank you everyone!

    The emotional aspect is probably the most difficult one to surmount...all the worries, the anxiety, the fears...

    I fully agree with 'Who'll take care of my son when and if something happens to me....' ! No matter how much I try to keep my head held high, it's just too much sometimes...but I have to, for my son's sake, so he'll know I'm fighting this stupid battle for him, and so he'll learn to do the same when he's ready to assume it by himself....

    To the mom who's not getting any support from the husband and family...my hats off to you...cannot imagine how tough it is for you! Bravo!!!
     
  10. Treysmom

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    The fear of something happening to me. I am the main caregiver for Trey. NO one else knows how to take care of him enough to do it all of the time.
     
  11. Twinklet

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    For us, it's also the emotional impact. Emily is getting tired of testing frequently, DH and I are getting tired of getting up at night to check her. For awhile we were able to sleep through many nights, but the past few months have seen many nighttime swings that can only be explained by hormonal issues. Perhaps we're seeing the onset of puberty, I don't know. But we are tired. :cwds:
     
  12. tiredmommie

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    Mine is the stress of worrying. I worry that my teen (19) who no longer lives at home is not taking care of herself like I would. You know is she dosing, eatting, correcting? All those things. For my youngest (9), I worry that she may never have the mental ability to take care of herself or learn how to count carbs. Since she has so many learning disabilities right now it is low on my list.

    I cannot image not having the family support. We are blessed that I do have the 19 year old who will always take care of her sister and then we have my sister who began this journey with her daughter being dx at 5 years old seven years ago.

    I applaud you that don't have family support, you are amazing mom's.
     
  13. Mojo's mommy

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    This could have been written by me,,,this is also my biggest issue with D
     
  14. hold48398

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    My biggest fear/issue is burnout. Both for my daughter and for us, her caregivers. There just never is a break from D. I wish we would just have one day a year where we could take off from it.
     
  15. DustinsDad

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    For me its got to be the constant vigilance needed - can't just relax and enjoy the day to its fullest without D creeping in and dictating whether we can have a normal day or not. Also the worry about all the impacts D has in his life or WILL have if something doesn't go right.
     
  16. czardoust

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    My biggest pet peeves with D are how it affects Katerinas siblings. I have heard from them, everything from "we cant go trick or treating anymore because of Kat" to "why do you give her what she wants all the time, just because she's diabetic?" (like thats true anyway). "We dont buy chocolate hearts on valentines day because of Kat." "Why cant we get easter candy?" Truth is, we get each child one small chocolate heart box every valentines day, they get candy from school for all holidays, and we stopped trick or treating before D entered our lives! (the griper was too young to know this Im guessing). What I really want to say to my kids is, "you get diabetes for just ONE DAY and see how YOU feel..." but I dont. :(
     
  17. Abby-Dabby-Doo

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    I am angry that my daughter can't be like every other kid out there, is normal the right word? Of course my daughter is normal. The world is tough enough without having to be different, so others can pick on you or not understand it. Yes, I do everything I can to make her just like everyone else. I am on a constant watch for products that hurts less, take less time, work better, make things easier for her or me, and so forth. I'm not vain, so don't think that. I just mean the every day stuff to the odd stuff ...field trips, dresses (the pump), sleep overs, birthday parties, treats at school, enough time at lunch to eat, p.e., a very active sport, 8 hours straight of sleep, bad teeth from lows at night, the finger tips, the possible complications, how she feels, I can't make it better, I can't take it away, the list just goes on and on.
     
  18. twodoor2

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    I have several:
    1) That my husband does not have the common sense to be a backup
    2) I'm a bit distrustful of the drug industry in this country. I think they are more concerned with money than providing better technology or a cure (diabetes is a billion dollar industry). I think we should have bloodless testing or implantable CGMS devices. The idea that we're still poking fingers to gage blood sugar levels in people seems archaic to me considering the technology we do have. :mad:
    3) My doctor's office, and all doctors in general.
    4) The uncertainty of knowing when she will by hypoglycemic and future concerns for her school (she's only 4) and when I'm not around.

    However, in light of the above, Elizabeth is doing great with the shots and myriad of finger pokes, and my waking her up twice a night to check on her. She is really an awesome kid, and I think that be just being the kind of person she is, this will help me be stronger for her.
     
  19. LJS118

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    The hardest is the rest of the world for me. Doesn't ever seem like anyone truely understands. Nobody understands the fear of Ryan getting sick, because for the normal kid its just a cold or a stomach bug, but for Ryan its worrying about ketones, blood sugars and possibly going to the hospital. Nobody understands that its extra hard to let him go on playdates and the extra things he needs to do just to play a soccer game. Nobody understands except for YOU GUYS((thanks))
     
  20. lisalotsamom

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    I'd say my biggest challenge right now is just the day.by.day--hour.by.hour--minute.by.minute vigilance. Some days I feel like I'm going to burn out from it. Other days it's no big deal. I'm constantly afraid I'll let my guard down and Tessa will either have a serious low or go into DKA. We've had some nights with unexpected lows, and others with highs from sites going bad. It's gotten so every time i wake up during the night (frequently, since I'm a very light sleeper the last few years), my first thought is "what is her blood sugar?"
    Honestly, no one except those of us that have gone through it can even start to understand the physical/emotional/financial toll this disease takes. Yesterday at a friend's house celebrating Thanksgiving, a woman saw me giving Tessa a bolus on the pump, and said, "Isn't it wonderful how easy it is to manage diabetes these days?" I just said something like, "Yes, I'm very thankful for the medical advances." True, but inside I was thinking that she has no idea ---- there is no break from this. That is my biggest challenge.
     

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