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It's not all life threatening

Discussion in 'Parents of Children with Type 1' started by Sarah Maddie's Mom, Mar 23, 2011.

  1. Sarah Maddie's Mom

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    This thread may not make me any friends, but I am dismayed by what I think is a new trend on CWD to frame every aspect of D management in hysterical language. Not every low, even a serious low, is a "life or death" moment. Not every carb count needs to be exact lest it result in a "life threatening" high or low.

    We as a community set a tone through our language, and lately it seems that we're collectively and simultaniously raising the volume on the "code red" stuff and lowering the "code red" bar to include nearly every mundane event.

    Yes, living with D is stressful, but unless it's our goal to prove to the outside world that, "yes, it really is that bad!" then, personally, I think we're doing ourselves a disservice.

    Like I said, this probably won't be all that popular, but I think it often enough to feel compelled to say it "out loud".
     
  2. StacyMM

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    That's interesting to read. I haven't been here long - took me a long time to find you guys :) - but I do feel more laid back than others about quite a few things. But other things, I'm more vocal.

    I think everyone has things they are passionate about or more focused on. If we are on a forum, we probably respond to posts about those things first. So...if I only post 4 times a week, it will be 4 things I find more important *to me* and not include the thing I am less concerned with. The result of that is probably seeing lots of passionate, concerned responses on posts :) It's the variety of opinions that make it seem more extreme.

    For instance, I think I reply on every post about ID bracelets because that's something *I* consider important. Posts about fat spikes and problems with pasta I typically don't even read...they aren't an issue in my house so it's completely off my radar. The next reader may have great solutions to handling pasta but think bracelets are a sign of over-cautiousness. Such is life :)
     
  3. buggle

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    First, I want to separate garden-variety T1 from kids who have it and other serious complications or associated autoimmune illnesses, because that's another thing altogether.

    But for regular type 1, I completely agree. My kid isn't deathly ill. He isn't frail and incapable of being a regular kid. There are professional football and hockey players with T1. Let's get real. People get huffy with Scribe, but in many ways I love this attitude. The way we treat our kids' diabetes is the way they're going to view it. My child is not handicapped and I don't want him to feel that way about himself.

    Carol's thread about food allergies vs D (the wishes thread) should clue us all in about how most kids view diabetes -- an annoyance.

    Am I terrified that my kid could die in his sleep? Yeah... probably way more than I should be. Am I hovering and need to let go and let him do more without me? Yeah. That's my issue and I'm trying not to make it his.

    We're three years in now and maybe things become a little different the longer you're at this. But I don't want sympathy from people for my kid. In fact, I'm to the point where I want people to forget he even has this. I wish I'd felt this way all along now. I'd love for people to think about all of his other attributes and when something reminds them that he has diabetes, I want them to say, "Oh yeah. I forgot he has that."
     
  4. hawkeyegirl

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    Oh, geez. Yes! Exactly!

    The last thing I want is for people to be looking at my son and thinking diabetes first and Jack second. I frankly downplay the role of D in our life to others, because I don't want people's pity or sympathy, and I don't want him to be the "sick" kid.

    As long as it doesn't endanger his safety, I couldn't give two hoots if people "get it" or not. As I frequently remind myself, diabetes is a small, small, small price to pay for getting to keep my amazing son.
     
  5. buggle

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    I think we all need a pity party sometimes. But that's what this place is for and our fellow D parents. I admit that for a quite a while, I wanted non-D people to get how serious this is, how horrible it was to be constantly sleep deprived, how difficult things were for Brendan, etc, etc, etc. I don't understand why I felt I needed that. But I want to reverse that now. And I want to smack myself upside the head for acting that way.
     
  6. selketine

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    I think the first few months (to maybe a year) after diagnosis, every day feels overwhelming and many situations do feel life -threatening.

    I remember the first time (shortly after he was dx'd) that I realized that he could go too low and die in his sleep. CWD only had the "chat room" back then and I was an absolute 5 star basket case. I was unconsolable and could not reason my way out of my panic. I just wanted someone to tell me that "no - he will wake up if he goes too low" but of course we can't never guarantee that. I wanted a guarantee. (I apologize to those poor parents who had to deal with me those first few months - you know who you are!). I couldn't even go to sleep that night. NO ONE holds a candle to me in how afraid I was of him going low for awhile there.

    It is really hard to remember back to that time and how it actually FELT - but I am a really laid back, level-headed and reasonably intelligent person and I was just blown out of the water.

    I don't know what posts prompted this discussion but I personally haven't noticed the "threat level" has risen. I think also that as we parents face our kids growing up that there are moments when the panic can come back over a certain situation (first sleep-over, driving the car, going away to college, etc). I'm personally ok with that. I also think the recent tragic passing of one of our member's children in her sleep has caused many of us to take another look at what "safe" is or is not or what we could do - or can we do anything?

    I do agree that, for the most part, diabetes eventually becomes a mostly manageable disease and one that you learn to adapt your life around (at least as a parent). The scary things ARE scary but we have to do our best, keep calm and carry on and all that.:cwds:
     
  7. hawkeyegirl

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    Oh, sure. I'm not saying that I never feel sorry for Jack or even myself. This is kind of a $hit sandwich. But if we spend too much time bemoaning our lot in life, we run the risk of becoming like the people that we complain about who don't "get it" - completely oblivious to everyone's problems but our own.

    Everyone has their own $hit sandwich to deal with. Ours is worse than some and better than a whole lot of others, and it doesn't hurt to remind ourselves of that frequently.
     
  8. DsMom

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    Yes, it definitely depends on where you are on the post-dx timeline! (And sometimes, for me, it depends on the time of the month!:p) I agree that, immediately after dx, everything seemed life-threatening to me. 70 on the meter--OMG he may pass out!:eek: 250 on the meter--ketones, akkkk!!!:eek: I have definitely calmed down in the past year and can handle the D lows and highs with more poise and less sweat.

    I do, however, think we need to remember how it felt in the first weeks and months after dx for those who are new here and to validate their feelings. Those feelings of panic and sometimes terror are real--and they don't really know what is or isn't an emergency. Like I said, I thought 70 meant imminent crisis. You live and learn. You are right that a calming influence here WILL help to calm the fears of those new to the disease. I wasn't here after dx and wish I had been.
     
  9. buggle

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    I agree, Karla. I have some friends dealing with the worst nightmare imaginable and it helps me keep things in perspective in my own life.

    And it is horrible at first, as we all know. Brendan didn't have to go to the hospital, so his endo increased his dosing very slowly. He was mainly in the 300's for the first week or so. It took ages to get him into range. And I remember how terrified we were of the first low. When it happened, Brendan felt like he was dying and I completely panicked. I also panicked when I learned about Dead in Bed Syndrome not too long after diagnosis. It was a Saturday night when I read something here on CWD and I emailed our endo at about 10:30 at night. She answered back right away (because she's the best endo on the planet), but I was still afraid and still am. So, we do need to remember that how intimidating and scary it is at first and that people have different personalities and ways of coping.

    But, I also think this is a lot like bringing a new baby home for the first time. It's also scary and you don't really know what to do. You're exhausted from lack of sleep and you have to do stuff constantly to take care of the baby and it's always on your mind every minute. But after about 6 weeks, you get the hang of it and it's not so overwhelming. I think it's similar with diabetes and then everyone has their own path. I don't know what I'm rambling on about or what Sarah's point really was, so I think I'll take myself off to work where I can't post anymore. :eek:
     
  10. 5kids4me

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    Can I borrow this???? I really need to read this daily. :D
     
  11. DsMom

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    I soo felt like this when coming home from the hospital after dx. Just like when I brought my first child home as an infant, I thought "You are really going to send me home and expect me to care for this child all on my own???? Are you kidding?" And just like a new baby, it gets easier and less scary.
     
  12. caspi

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    I completely agree! But I have to wonder if it perhaps has to do with the person's past experience? For example my son has been so low that it registered low on the meter, but he was acting fine and we were able to get him back up quickly enough. Others have had to use a glucagon when their child was in the 50's, so they're a bit more freaked out about going low. Same thing with ketones - my son doesn't get them very often but others do and they end up in the hospital. So when my son had his first sickness with ketones, I had a lot of people telling me to rush him to the ER right away! In their experience, it's what they had to do.

    What I have learned is to look at the big picture when I'm reading things others have written. What works for one doesn't necessarily help another. But the fact still remains that we have this great place to come together! :cwds:
     
  13. StillMamamia

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    I think that had I started posting here right after dx, I would be the same. I was afraid of everything, from going grocery shopping to a walk to the playground. It was a good thing I started posting way after that (or maybe not such a good thing, depending on who you ask:eek::D).

    Anyway, my point is we are seeing a lot of new dx and they are introduced to CWD very early on (which is a good thing, for support and all), so we are seeing very raw emotions, and the need for empathy is probably greater at this stage than later on, maybe?

    That said, I really want to stress something - make things work, don't take no for an answer, find a way out, a solution is there, you just have to look for it, sometimes you have to work your tush off to reassure others that it will work, and be prepared to meet obstacles halfway...then kick them down.:p

    And above all, don't expect perfection. You'll be hitting the burnout wall soon if you do.

    ^^^^ spoken by an experienced D-manager....not. But I mean well.;)
     
    Last edited: Mar 23, 2011
  14. swimmom

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    Agreed Sarah. I try to see whether the person posting has a toddler or very young child because I'm sure managing d in an non-verbal child is much scarier. And I look for diagnosis date because those early days are so difficult.

    But there sure are some folks who tend to stay on Defcon 1 at all times.

    And as long as you've brought it up... I wish some of us could learn to let annoying comments from the uniformed (especially non-family members) roll off our backs a little bit better. Feathers seems to get ruffled quite easily.
     
  15. Dmama24/7/365

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    I agree and disagree.

    There IS so much more to us than Diabetes. No doubt about it. I dont panic over every low or high, but I do act diligent in giving Justice best control possible. For me that means lots of basal testing, exact carb counts etc.

    I also am a blogger. So the things I wouldnt say here I may write there. I want to spread awareness, I want people to get IT.

    And while we dont want people to think our kids are crippled or fragile, we want them to know this IS a serious disease, you CAN die from it. If we dont educate people, than its only our fault when they not only make ignorant comments but perhaps dont act when they see a type 1 in need.
    Someone may read my blog and now know how to treat a low, and save a strangers life. To me thats important.

    BUt on the flipside I need to find ME again which is why I started a blog where Diabetes isnt even allowed to be mentioned! And GOD IT FELT GOOD!

    I think we need to remember just like YDMW so do the parents, we all cope, deal, educate in different ways. We just need to support each other no matter how different our ways may be.
     
  16. SarahKelly

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    Good point Alexis. I think blogging for me has done similar.
    Also, my view is different in that I see my husband with t1d for over 20 yrs and know that all will be okay. I know it takes hard vigilant work and at times it's daunting, but overall it's not "end of the world" either. He is a constant reminder to me that despite where I may miscalculate or over analyze things will turn out fine :)
     
  17. gerry speirs

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    Too true....
     
  18. Lee

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    Honestly - I think I get where Sarah is coming from...newly diagnosed folks are not even included in the equation because, well, there is just no equation for handling a new diagnosis.

    I guess I started to selectively read when a parent who had been dealing with this for a while posted about how awful it was that the kid was in the 250's fro an hour! OMG - his feet were going to fall off! I read this about 5 minutes after the meter told me Hi!

    And that is when I stopped reading most posts. It rankled.

    Also, having to watch some wonderful people, truly great friends, go through the worst - well, it has 100% changed my perspective. I remember, when we were first diagnosed and people told me it could be worse - well, I would blow my top. I thought this was as worse as it gets. Now I know. This is EASY compared to as worse as it gets. I would take D any day, comparatively speaking.
     
  19. Connie(BC)Type 1

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    Good thread Sarah,

    My parents always kept things in line, no pity parties allowed, deal with it, get on with life. I know they were scared at times. My Dad was terrified of Diabetes, we never talked about it. Mum was the strength and the one to smuck me upside if I decided to pull the "burnout and self pity aspect". She still does if I need it.
     
  20. Dmama24/7/365

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    Agree, and agree! I do wonder sometimes if it isnt that there not really educated? I have seen people post how their kid was in the 80s for 3 hours and theyre freaking out. Where as unless its at night, or hes being active Im love seeing that trend!

    Does that make sense?

    I also agree it COULD be worse, I just spoke with my son about this the other day. It would be a great world if while we realize yes it could be worse, people still dont belittle what we DO go through daily.
     

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