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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. tandjjt

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    Wow - I haven't had time to get on the forums much at all recently and come on here tonight and this is the first thing I see - Wow

    Most of you who know me (I am a senior member after all ;)), know my southern AL charm, golden rule, kill em w/kindness ways and that I absolutely never want to offend or hurt anyone - so remember that and read on :)

    While I partially agree with the OP - It does concern me that some (esp newbies) might read and be hesitant to post for fear of seeming overly dramatic or belittled for what some might consider as over-reacting. Sure, lots of things now don't freak me out like in the beginning, but I can still get my cage rattled from time to time and if I can't come here to LET IT ROLL, then its not a very supportive place (and I do believe it is, don't get me wrong please). In fact, even the little things build up from time to time and make me feel completely insane! And OK, I admit that ketones really push my panic buttons - I hate them, they scare me!

    All of us have different levels of "control freak" and "panic button pusher" traits in our personalities - its normal - but we all need to respect each other's feelings whether we feel the same or opposite. OK - end lecture now :rolleyes:

    I do believe, however, that bringing awareness of all the bad and scary stuff has its place. Fundraising is one place we SHOULD use every bit of it - I will throw the world's biggest pity party if it gets us even 1 small baby step closer to a cure. Also, awareness comes into play for everyday situations at times in cases like -- If someone sees me reacting to a bad low - I surely would be extremely po'd (and possibly knock their lights out) if anyone made light of it or brushed it off as an over-reaction... or if someone sees me pitching a "fit" because a school nurse or teacher did something completely ignorant - I do want people to understand that I'm not some crazy woman, but just a Mom who is dealing with a serious situation and doing her best to support, care for and advocate for her child.

    KWIM???

    One last thing - this one is pointed at Frizz -- girl, you know I love ya and your avatar made me giggle, but it really could be taken in a "not nice" way, ya know:p
     
  2. lisab

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    I think yes at times....some can appear to be overly dramatic or stressed by lows or highs more so than others, or stressing about being absolutely accurate in every aspect of carb counting, weighing or whatever....most of the time we just wing it as best as possible and deal with whatever come what may, with similar results as if we had...but with less stress. Although as others have suggested, it depends on how newly diagnosed, or how often they have dealt with lows previously....everyone has their own comfort level. I suppose it would also depend on how their child reacts to lows or highs, both physically and mentally which is usually the reason behind parents being overly stressed about striving for perfection with management which in turn can lead to more stress as perfection just does not happen very often with diabetes...if ever.

    When Yasmine was first diagnosed every low (due to hypo-unawareness) resulted in her on the ground, floppy, eye rolling, barely there type lows....regardless of constant bg testing to try and avoid lows and constant supervision...this kid could drop like a rock. On the outside...I was probably cool, calm and collected, on the inside I was shakin in my boots. As time went on...we became more confident in 'picking' lows a mile off...due to slight change in facial colour or the glassy eye stare or the ever so slight change in the pitch of her voice. Yasmine eventually was able to tell us if she felt funny or shaky or sick. Hypo's have been a regular occurrence in this house, mostly we treat and move on with little fuss. Then there are the one's that are stubborn and hard to treat and just go on for way too long. Then there are also the times that we have had no choice than to use Glucagon or Mini Rescue Dose. It takes a lot to rattle me now....but I have had years of experience of dealing with the day in day out 'dramas' of having a child with diabetes and all that comes with it.

    I think any cry for support is justified if a parent is not coping with dealing with lows or highs....to offer support will only serve well in that they will eventually get to the point of coping by having been given comfort, needed at the time. Part of offering support is providing the lift needed to give them the confidence in knowing that over time they will handle those situations without feeling as though they are 'falling apart'...they will eventually not over react to a mild low or stressed over the occasional highs.

    Yasmine had a very prolonged honeymoon for nearly 3 1/2 years.....we had never dealt with those stubborn prolonged highs that didn't seem to budge.....but once we did....OMG....how frustrating....to be that far in this journey...I felt like a newbie, didn't have a clue how to deal with them...what I had always done just was no longer working. Took a while to get the hang of it again.....it knocked my confidence in a big way...that I just couldn't get things on track and had to change what I thought I knew.

    Everyone has their frustrating moments....which some may feel...better after posting and venting....is this not what this forum is about?? We are all in this "D" journey together....we are all at different stages of this journey....and all have different ways of coping with the day to day stuff. Some may post 'while in the moment' - whilst emotions are raw....give a couple of hours....they may not have posted in the same manner or with the same level of emotion....this too should be taken into account.

    It is by reading posts and the responses or of other's similar experiences or the words of wisdom from those more experienced, that will bring them to "that" place where....you don't sweat the small stuff...roll with the punches....correct up or correct down, move on..... and just get on with living life.....of which "D" just happens to be part of.:)
     
    Last edited: Mar 24, 2011
  3. StillMamamia

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    I posted about Spam recently on FB. Corned beef to be exact. I did not know it was Irish.

    Anyway, what can we learn from the OP? IMO, that there will come a time when not every low or every high is a "OMG, this sucks" issue. There will come a time when one starts to go "Low, tabs/juice/Skittles" or "High, crap, I underbolused, let's fix that" all the while as you are doing your grocery shopping and performing a multitasking feat - trying to keep your youngest from taking all the gummy-bears bags and feeding your kid with D, while your shopping-cart takes on a life of its own and bumps into the oncoming family, who then look at you like you truly must be the most disorganized person on Earth and above all, feeding your kid in the middle of a grocery-store. Geez, people, "OMG, this sucks", but hey it'll happen, life goes on, some days you're doing fine, then some days you just biatch at whatever cross your way, including innocent trees.

    I didn't get the blogging fight either. I didn't see any reason for one, but glad it's fixed now. I blog. A very sorry blog, which is the humble abode of spiderwebs for lack of maintenance. It wasn't even to get D out there. It was my way of letting go of so many emotions. It really helped, but it's not a good blog, LOL.
     
  4. FloridaMom

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    ....and this may not make me any friends either, but....

    I agree that a lot has to do with our history. I know I've said this before, but my dad passed away from a hypoglycemic event. Yes, he had Type 2 and yes, they are very different. However, I spent my childhood in hospitals with him while he had a kidney transplant and both legs cut off (multiple surgeries). Before the kidney transplant, I watched him go through 3 years of dialysis. I picked him up and put him in my car as a teenager and drove him to prosthetic appointments, nephrology appointments, vascular appointments, etc. I could go on and on, but you get the idea.

    Again, I know what Type 1 is and I know what Type 2 is. However, I am very aware that these are things MY CHILD could face without good control. Forgive me if it scares the sh!t out of me.

    I've gotten a lot of great advice here. I've also gotten out of left field snarky replies to my posts. At first, I have to admit, they upset me. Now I just wonder what the point was and move on. I still come here every single day.
     
  5. Sarah Maddie's Mom

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    This concise post got buried in the avalanche of ego, but it's spot on imho and besides, who doesn't like the name "Lulu"? :cool:
     
  6. Becky Stevens mom

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    Yep, I knew that was Monty Python before I even saw that part! Was that the one about Spam? I would like Spam,spam with spam:)
     
  7. caspi

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    Well said! (I missed this post last night as well, lol!)
     
  8. Becky Stevens mom

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    Oh Ive got a good one! About 3 or 4 months after Steven was diagnosed he woke up in the morning and was 260-something. I freaked out:eek: tested for ketones, he was negative. Then called the endo on call as it was a Saturday morning. She called me back and I told her in kind of a breathless, panicy voice that Steven was 260-whatever it was!!! He had never woken at that high of a # before. She asked if I had tested for ketones, I replied in the affirmative. She then said to give him a little extra insulin for the higher number, then chastised me for calling her about that on a Saturday as it wasnt an emergency. I felt extremely dumb:eek: Now if he wakes at 260 or even 360 I go Oh s**t! give him a correction and get on with the day figuring theyll be more testing the next night;)
     
  9. caspi

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    Eating in restaurants. At first if they didn't have a carb count list, I wouldn't dare step foot in the place and I would be so annoyed at said restaurant for not having this information, lol! :rolleyes:

    Now we go, we guesstimate, we bolus, and we enjoy ourselves! :D
     
  10. nanhsot

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    I have to really work on this aspect of it as well, I work in a rehab hospital as a therapist and see a LOT of what you describe above. Just last weekend I had 4 patients on dialysis...all diabetic. I saw a man with gangrene who lost his leg then had a stroke. I could go on and on as more than half of my patients have Type2 and do a horrible job with it. It's disheartening to then come home and see that my son was riding in the 200's all day or whatever. It's frightening in the extreme.

    Yet...there IS a difference and I work hard to keep the right frame of mind and not teach and/or react in fear. I've seen exactly ONE Type 1 in the past year, and our agency (I also work home health) saw another. The 1 I saw unfortunately also had MS (which is autoimmune and not uncommon, which also scares me) but she had grit and determination and was healthy and well despite all her challenges. The other, well, he abused drugs and was doing horribly.

    I often ask the folks who are doing horribly how long they've had D and 90% of the time they shrug and clearly no NOTHING about managing it. They clearly haven't been educated or chose to ignore it.

    This IS NOT going to happen to our kids, technology is better, our kids are being educated and cared for in ways that wasn't possible just a decade ago.

    Yes, it's scary as heck, knowing so intimately what you know. And I fight like you do keep the images of that type of devastation from rooting in my brain when it comes to my son.

    I have no idea what the point of this post is, sorry!! I mostly wanted to stand next to you and support you. I fight like heck to stay positive but all in all, I truly do believe that our kids are going to grow up healthy and happy and have wonderful lives. I agree with the OP, it's not all life threatening, because we know more, we have more ways to deal with it, and we're dealing with it.
     
  11. frizzyrazzy

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    I think the point is - we all freaked out when we were new - over lows and highs. We all did. But eventually we have to adapt and move beyond that sense of utter panic and fear and sadness. Because we don't do our kids any favor, 3 years after dx, by regarding EVERY high bg and every bout of ketones and every vacation and trip to a restaurant as a life or death situation.

    I mentioned to someone the other day - about willow trees. When they just stand there, they're fairly ugly, weepy looking, but when the wind blows...then they are beautiful. The one thing that has the power to adversely effect them is what makes them beautiful. We can all stand and be rigid and fight against diabetes or we can let it make us beautiful.
     
  12. txmom

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    We are a little more that a year into the D journey - my attitude has changed significantly along the way. I too used to freak out when numbers were out of range, we never ate out, I cooked a lot of chicken with vegetables, bread and other white stuff left our house. OMG I was a food nazi. My 16 year old thought nothing of going to chipotle and having a HUGE burrito with his friends and guessing the carbs.

    Now we all roll with the punches, we have ice cream night as a family again, we eat out, we eat off schedule, we sleep in, we live again.

    None of my friends really understand D (my mother just told someone in an email he was type 2 and they called to ask my when his diagnosis changed).

    The worry is still there in the back of my mind, but I love to see my son become so confident at handling his D. He refers to it as sh*t happens, we correct, we learn, move on.

    We no longer try to guess what caused every out of range number - sometimes we counted carbs wrong, sometimes exercise is to blame, sometimes hormones......if we see patterns we change, otherwise we don't spent too much time in the analysis mode.....everyone is much happier
     
  13. SueM

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    I think that a lot of this has to do with different personalities in general. With or without type 1 d in their lives, people are different.

    Some are more open with their fears, concerns, "issues" and some are more private and/or let things roll of their backs more easily. Neither way is wrong. Just different.

    Personally, I fall more into the rolling off the back type of thing when it comes to type 1 diabetes... By looking at my FB page, you wouldn't even know that I have a child with type 1... That's just the way I am. I know that in the past when I have mentioned something about type 1 to an acquaintance of mine (not a friend), it seemed as if she brought up type 1 diabetes on subsequent talks after that. For example, I had said something to the effect of ... "Tough time with Lauren this morning, couldn't get her blood sugar in range, she's probably going to be exhausted at school today". It seemed as if for the next few times after that she would ask about Lauren's blood sugar. "Is she ok today"? That type of thing. Ugh. I have learned over the years to keep the diabetes talk to a bare minimum. Again though, that's my own preference. Everyone is entitled to do what they want in terms of that. :)
     
  14. kimmcannally

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    LOL! We ate out more than ever right after dx. Of course that was because I was trying to change my pantry over to things that had a diabetic could eat :rolleyes: and we were out all the time getting supplies. It was so easy to go to a restaurant, find the carb count, and bolus for it. I wouldn't have considered going to one without carb counts! :eek:
     
  15. Ashti

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    That tickles my funny bone. :D:p:)

    Good thread.

    D is like driving a car - it is not all life threatening - but the risk is there.
     
  16. mom2ejca

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    For me, it's more about teaching my child where the biggest dangers are. If I lump every low and high into the same *OMG* category, then I'm afraid we might run into "the little boy that cries wolf" at some point. Soon it all becomes equal and I would fear that I'm risking her not taking any of it seriously.

    Do I get concerned when she's vomited 3x, bg's are hanging low, and ketones are creeping up? Absolutely! That's a situation worthy of my concern, and I think it's ok for her to see that and know that we need to be on our toes. If I treat every low in the 60's with an equal response, then there's no weight given to a situation that could truly go south quickly.

    She's not going to be a child with diabetes forever, sooner than I would like she's going to be a teenager and then an adult. Teaching her that she's in peril every day, from every high and low, isn't going to do her any favors.

    FWIW, I don't give a rat's behind what the outside world thinks. Many people are going to form their opinions based on half-baked assumptions anyway, and I've got more important things to do than trying to fix that mess;).
     
  17. jules12

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    I agree with your statement because I do downplay the nitty gritty of D to my ds's friends and families at school because I want him to get those invites, etc.

    However, I do stress over carb counts being off by 2-3 carbs and getting .4 instead of .5 of insulin - right now my kid has a sensitivity level of 300 and it's been 4 years since his dx. His endo calls him carb and insulin sensitive. It's why I paid to upgrade to the Revel so we could have the tiny doses, etc. Another child I know can be off by 8 or more carbs and still be in range... When people talk about carrots and other veggies being free - I think how lucky for you because we have to count everything!

    I guess what I am trying to say is you may not really know the background for why someone is "freaking out" over something that may not be an issue for you. I think on this forum if no where else, you should be able to share those fears, freak outs, etc.

    And yes - I will confess - in the beginning, I freaked out over a bg in the 80's - now I think it's wonderful and am trying to feel the same about the 70's.....
     
  18. Sarah Maddie's Mom

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    I agree. What we do and what we say, both here amongst ourselves (though to a lesser extent) and most importantly in front of our kids, sets a tone. We can have it be a blaring, high volume tone, or one mediated by and relevant to the event.
     
  19. sisterbeth43

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    I came back this morning to catch up on this thread. Still very interesting. And as for eating out, we did it all the time and guesstimated the carbs.

    And I don't remember who used this word in their post, but I thought it was cute--horriblize.
     
  20. Alex's Dad

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    I have to say I don't agree with you at all. and here is why?

    Would you tell the parents of the kids that lost their life in recent years because of diabetes that it is not life threatening?

    To me it is , I know more kids die from other causes yearly than from diabetes, but they still do, so it is basically life threatening.

    I have to agree that not every carb needs to be exact, and that a 200 won't make my daughter loose a limb. But I do worry a lot about a low at night and about "dead in bed syndrome". Why? well because is my daughter and because it could happen, she will not be the first or the last. Maybe I worry because we are newly dxd maybe because is my nature. Every newly dxd parent is scared, how good you feel about the way this condition is going to play a part in your family life takes some time. Some people get over the fear pretty quick others don't.

    We need to make our mind on how are we going to portrait Diabetes to the outside world that doesn't get. There are two kind of people, (1) the ones that think diabetes is no big deal, once you have it under control is piece of cake and (2) the ones that think that your child will die if he/she eats a piece of cake and if you give him/her one you are a bad parent. I understand that we as a parent don't want our kid to be label a handicap because we know they are not. But at the same time we need to educate people on how severe this disease is and how things can turn ugly in just a few hours, and how to respond to symptoms. If you are interested in creating awareness of your child's condition, it is up to you, but please don't look down on those that want to do it for their child, we all have different ways of doing things, as we have different methods of dealing with D on a daily basis.

    Some people here have said in multiple occassions "My child can eat everything he wants as long as he gets insulin for it." and they will fight with whoever says otherwise. Turns out its not that way and a recent thread was prove of it. Now are we being hypocrites or we just want to portrait something different to the outside world?


    Not everyone is lucky enough to have the "almighty CGM" that tells you everything.
    Not everyone is lucky enough to have an older kid that knows when he/she is low or high.
    Not everyone is lucky enough to have the "almighty pump". If you are don't look down on the ones that still do multiple injections.
    Not everyone have been dealing with D for many many years and care less for it.

    Going back to the first statement, it is life threatening for me, and that is
    something I have to educate my daughter as she grows older. She has to know that if she makes poor choices they will have a negative impact on her health. Not to live in pity or fear, but know the consequences of neglecting her D care, knowing that she can live a "normal" life, but Diabetes will always be part of her, she can't take a vacation from it.

    We either want people to get it and contribute to funding for a cure, or we don't and don't really give a crap about it.

    I think your thread is very unwelcoming to every newly diagnosed parent that come to this site for advice and support. Just my 2cents.
     
    Last edited: Mar 24, 2011

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