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I Feel Like I'm Just Waiting... Always Waiting...

Discussion in 'Parents of Children with Type 1' started by SandiT, May 24, 2013.

  1. SandiT

    SandiT Approved members

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    I feel like I'm just always waiting for the next blood test, watching the clock to be sure I don't miss it. Today she has a doc appt. so now I'm just waiting for that.

    I feel like I'm just waiting for the next snack time--dare not miss it!

    I feel like I'm just waiting for the next midnight telephone alarm. The next 3 am phone alarm--and what if I sleep through it??

    When she has school (none today; parent-teacher conferences)... then I'm just waiting (and waiting) to find out if I must go over and give her a shot.

    I know that, with the pump, it will be less necessary for it to be so rigid once she's on the pump; but I'm just waiting for that, too... Always just waiting...

    It's uncomfortable and my anxiety level right now is so high since she's sick and the doc appt isn't for several hours. My stomach is in knots, for no really good reason except that I'm so worried about her having another low (the last few days, 4 of them, and that with no basal insulin!).

    Ugh. I'm a mess.

    How do you deal with the "just waiting for the next meal"?
     
  2. StillMamamia

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    It takes time, and you have to get there one way or another (either by yourself with with some help). One day you just have a lightbulb go off and you realize there is life to be lived in the "waiting" times, and you go into a routine of going about your stuff and integrating diabetes into that.

    The best advice I can give is don't lose yourself in the anxiety. Get some help, find some time to go for a walk, to go out with friends, etc.
     
  3. tammy82

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    I know its hard the first few months but with time it will be like second nature. I just do it without too much thinking about things these days. We have been doing this now for over 7 years so when you do it for so long you are very used to it. My husband usually does the early morning checks since he goes to work early and will do the late night checks since he stays up late. Thank goodness for that or I would probably go crazy. I think maybe once your child is on the pump there may not be as much anxiety. I felt very anxious with the needles for the first 3 months and then moved onto the pump and everything worked themselves out nicely after that.
     
  4. kirsteng

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    Don't discount the anxiety if it's getting to you on a regular basis - talk to your doctor. DH went on anxiety medication a couple of months after our son's d/x, and feels so much better for it now. I think I'm more anxious than he is now.. and I've always been the laid back type! ;)

    I know what you mean though about the waiting.. it does feel like the day is made up of a bunch of tests, meals and snacks that need to be done. For me, it really reminds me of what it was like having a newborn.. the constant nursing and inability to leave the house without a bag full of supplies and a plan for when the next feeding/changing was going to happen. But even with a newborn, at some point you just start to keep your diaper (diabetes) bag by the door, and grab and go regardless of the time. That's what we all have to learn to do with diabetes too... not let it dictate the plans. maybe the schedule to some degree, but not the plans.

    ((hugs))
     
  5. shannong

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    Oh, so many days I am right there with you! Especially if you throw in any other issues like sickness. I do try and keep in mind that if I want my son to not let diabetes stop him from living his life, then the same goes for me. Moms and Dads need to stay healthy too. Hugs to you.
     
  6. hawkeyegirl

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    In time you won't be "just waiting" for the next D task any more than you feel like you are "just waiting" to tell your child to brush their teeth the next time. It's hard to imagine right now, but it will happen.
     
  7. nanhsot

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    These are early days yet. I know that 6 months seems like a lifetime in D years and you've learned so much, immersed yourself in it...but really and truly, you are still in that crazy curving road that is diagnosis.

    It will get better. You will have days where you barely think of it, or at least not any more than you think about what's for dinner and did I remember to lock the car. It'll be a chore of sorts, an important one, clearly, and one that matters more than most chores, but it will take on a status of normalcy. But right now, what you are feeling, experiencing, worrying about is all very normal, expected.

    My advice is to just look at the next step. What's the NEXT right thing to do. Prepare for the steps after of course, but don't stress about them. Just do the next right thing. Then the next. Etc. Pretty soon you're just walking, one step at a time.
     
  8. SandiT

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    Thanks all.

    She seems to be just "normal" sick, which is good. I think if I had a better alarm system, this would feel less constant for me. But as it is, I have to keep checking the clock just to be sure it's not time yet. *sigh*

    On the other hand, I don't want to fall into the "it will get better when..." trap. Though I feel like I might already be there at least a little.

    But this, too, shall pass.
     
  9. cdninct

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    NPH really was a "waiting game" with us too, and I found it very exhausting. Diabetes really did rule our lives until we started on the pump (although I don't think I realized how much of a difference it would make until we had made the switch). Hang in there!
     
  10. Ellen

    Ellen Senior Member

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    NPH really puts you on a clock/schedule where you have to fit life into diabetes care rather than fitting diabetes into your life. There are other alternatives to get freedom from the clock. Have you explored those options with your endocrine team?
     
  11. SandiT

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    Yes. We've done the preliminary steps for getting the pump, but now the nurse endo is dragging her feet about the saline trial.

    On the 30th, we go to see the doc in Boston. We're changing to Boston from a local place.

    I don't know what impact that switchover is going to have in all of this. :(
     
  12. Ellen

    Ellen Senior Member

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    The more knowledge you go in with, the more you will feel capable of advocating for exactly what you want. Read and understand how the pump will benefit your child so you can advocate for why you want this ASAP (if that's what you want) (read a book on pumping like Pumping Insulin or others), or ask for Lantus instead of NPH so you can have more freedom from the clock ASAP if you want that. You can have it your way - as long as you understand why you want what you want for your child. We are here to support you in your decisions.
     
  13. joy orz

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    When I graduated college, my aunt gave me a copy of "Oh the places you will go." By Dr. Suess. It sat on my bookshelf for years until I had kids and read it to them. It hit me like a ton of bricks. Reread it, and you'll see.

    But there is this...

    "Somehow you'll escape
    all that waiting and staying
    You'll find the bright places
    where Boom Bands are playing."

    I also used to blast Steve Songs "If you want to fly"
    "you've got to get up before you do any walking, you've got to crawl before you even try."

    Both written for kids but have a whole new meaning when you are tackling the big D.

    Hang in there!
     
  14. Charmed7

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    I remember our first year. In hindsight I call it the year of crisis. It was like every little thing was amplified and stressful and anxiety ridden. Just planning on going to my cousin's house was so hard.

    This too shall pass. You will get in the groove. The other day my son's sugars were elevated during a meeting with some teachers. Without missing a beat, I gave him a correction shot and just kept on talking and everyone was like, "wait, what did you just do?" It just becomes so second nature and you learn to go with the flow.

    For now, just try to keep calm and maybe find a way to set reminders for those daily things like the snack time etc. so you can give yourself a break from worrying you'll miss it.

    Good luck and hang in there. Hope Boston works out for you.

    C7
     
  15. SandiT

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    Thanks.

    It's very stressful right now. Last night, Kira said, "I'd rather be dead than have diabetes". This morning, I talked with her a little bit again, and she said, "Life is just so hard with diabetes." :(
     
  16. Nicole N

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    That is what my son often says...absolutely breaks my heart.
     
  17. SandiT

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    It's hard to hear anyone say it. It's harder still when it's someone that you love. Hardest of all to hear from a child, whose life should be carefree as much as humanly possible.

    I reminded her at that time, "Hey, you like going to school, right? A person with diabetes can do that... but they don't let dead people go to school." She scowled and said it wasn't funny, but she was obviously laughing. I reminded her of other things she loves in life...

    But what do you do? I think we're going to need to get her some help. It's too hard to know how to help her. :(
     
  18. Nicole N

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    It is so very hard to know how to do and say the "right" things. We acknowledge his feelings, we acknowledge that having d is not easy, we point out all the fun things he does, we talk about the fact that other kids he knows have challenges too - just different ones (although he tells us their challenges are much easier than his - and he's right), etc. etc.
    Christian did see a psychologist soon after diagnosis and then briefly again over Christmas. I'm not sure how helpful it was. Now when I ask if he'd like to talk to her again...or even our priest at church...he says no, "when I'm sad I don't feel like talking".
    Dealing with his emotions is almost as hard as dealing with the disease.

    I just keep trying to learn...keep trying to understand how to manage this better...keep trying to keep his life as normal as possible.

    Nicole
     
  19. Helenmomofsporty13yearold

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    I am really not trying to be mean here, but she sounds like she is imitating you. Our kids get their cues from us. If you have not accepted this yet, how can a 6 year old? We saw a child life specialist every chance that was offered to us when DD was first diagnosed and for years later. As a teen, she saw the social worker. She will not go now, but I am really glad we went when she was younger. I got lots of help for myself, also.

    The amount of learning one has to do and the new habits one has to develop are overwhelming at first. It never gets "easy", it just becomes your life.

    Even with the pump, I feel like I am always thinking about the next meal because she is always hungry and I feel it is important to have decent food available to her. Life was a little more structured on NPH, like supper had to be at 5 pm, but now she is looking for food at 3:30 because she has to go to work and more at 9pm when she gets home or 6:00pm when she had a game after school or 5:30 because she has a game at 6:30.....

    DD has often said that given a choice, she would choose to have D again because of all the wonderful experiences and people it brought into her life. (Of course, she would love a cure any day now). I hope you have some of these "good times" soon.
     
  20. missmakaliasmomma

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    Maybe you need to talk to someone, or your dr about getting some anti anxiety meds.. It's very stressful in the beginning and can be stressful at times years after diagnosis. My daughter was diagnosed at 1 1/2 and she's almost 5 now and I'd be lying if I said it didn't bother me all the time. I don't let it get the best of me. I always tell myself that diabetes is NOT the end of the world and it seriously could be so much worse. Diabetes is not a death sentence, you just have to be more careful with things. Telling myself that keeps me in focus. My daughter is my #1 priority all the time and the diabetes just comes along with her.

    Being on the pump does not mean you have to be less rigid in my opinion. My daughter went on it about a month ago. During the first few months its a lot of testing and talking to the dr especially with getting the basals right. It's not a walk in the park. I wake up to test her probably about 3 times a night (the least). I get no sleep. I've gotten used to it and if that's what I need to do to make sure shes ok, then I do it.
     

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