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Thoughts on using CWD to your advantage

Discussion in 'Parents of Children with Type 1' started by Sarah Maddie's Mom, Dec 4, 2012.

  1. Lee

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    But we all have different styles of communicating. And if one person types 'Why on earth...' they are not being snarky, they are being genuine.

    I would rather take genuine and authentic over having to watch every word typed anyday.
     
  2. caspi

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    I agree. Those that are so quick to judge aren't the ones that are here day after day to see just how helpful people are here. As I said in a previous post, I truly would have been lost without CWD in my early days and I still learn new things 6 years into this.

    Here's a perfect example - in the early days my endo practice told us we didn't need to use blood ketone strips, that the urine strips were fine. It was Jeff that commented and said if they won't give me the blood strips, to find a new endo. I was grateful for the advice, stood my ground and they gave me the rx. If that was to be said by someone else nowadays, they'd be called snarky for being so blunt. I think people need to lighten up a bit. :cwds:
     
  3. nanhsot

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    My point was/is we need to remember that the newbies, particularly, are very sensitive. I don't get easily offended online, but in those early days where every little thing made me weep, anything and everything did send my emotions crazy directions. So if my knee jerk reaction was that my kid shouldn't eat candy or he'd shoot up into the 500s in minutes (as my mistaken brain might assume back then) and I asked for advice, to be treated so harshly would make me feel like I was stupid, and I'd likely not return to this site. That bothers me greatly.

    I see it quite often actually, and I do believe and realize that the person means no offense and truly IS being helpful. But often I cringe when I read it through the eyes of someone just trying to find my feet again on very rocky, very scary, very emotional ground.

    I guess what I was trying to say is not to watch every word, but to remember your audience, tailor your words when it's someone new and fresh and raw you are responding to.

    I just personally believe a little grace goes a long way, both in life and online.
     
  4. Lee

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    Maybe I am just so far away from being a newbie now that I have a hard time relating to them. But if anything and everything send them over the edge anyway (which no - it never did me, I was always incredibly happy that people reached out to help me), then no matter what is typed will be taken wrong.

    EVERYTHING DOES SUCK when you are newly diagnosed, but would you rather have a real answer or a fluff answer? To me, this is not necessarily a newbie thing; rather, it is a personality thing, and what is right for me may never be right for you. That is my point.
     
  5. nanhsot

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    Ok, but did Jeff say "stand your ground, you need a blood ketone meter, they are the better than urine strips because of xyz. If this Dr. won't help you get one, consider getting a new Dr. who will listen to your concerns."

    OR "Why are you listening to your Dr? He sounds like an idiot, I'd demand what I wanted and I'd tell them I'd fire them if they didn't give me what I wanted."

    A bit dramatic and no I actually have never seen anyone say that, but it's the point I'm trying to make. A little change of wording can make a point heard and received differently.

    I can remember being new, and thinking every move I made had to be approved by my Dr. She literally was my lifeline (well, the CDE was actually) and nothing or no one could convince me they weren't the experts. I slowly over time realized that parents are the experts, and Drs are resources/Rx writers!

    When you are new, to hear you shouldn't listen to a Dr. is scary. But to be empowered to question your Dr, to arm yourself with knowledge and approach them intellectually, and ask them to listen to your input, that is a step in the right direction.

    I see people give advice about finding new Drs all the time, and I've never thought it snarky.

    It's all about approach, wording, and tact.
     
    Last edited: Dec 5, 2012
  6. nanhsot

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    I'm similar actually, and have very thick skin online. But I do often see new folks come and get offended, and I just hate to see that happen when a simple change of wording might have been received differently.

    I don't see that I am advocating a "fluff" answer. Honest, real, wisdom filled advice is clearly what must happen. Being very blunt is fine and often necessary. But sometimes the words come out more harshly than I think people realize. The difference between "why on earth" and "you could..." is pretty significant. And it could be the difference between the truth being heard and driving someone away.
     
    Last edited: Dec 5, 2012
  7. StillMamamia

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    Yes, a signature would be great, as well as a more specific title - it doesn't need to be long, just "High ketones - Help".

    As to how to make a signature:

    Click on User CP (up left hand)
    Choose Edit Signature
    Type your signature on the box
    Scroll down and you'll see "Save" or "Preview"
    Make any changes you want
    Don't forget to "Save" at the end
    :)

    Just a word on why a signature helps - for ex., I have zero experience with Lantus, so if I see a thread about "Help - messed up basal insulin dose" and the post nowheres mentions it is Lantus, I may go on and on about something I have no experience with, though I could probably figure out from checking out past posts if you're a newbie, therefore you may NOT be yet on the pump, so mostly likely using a long-acting insulin, perhaps Lantus...see what I mean?:p A liitle info goes a long way.

    And try to avoid run-on sentences like mine above.:D Just kidding.

    AND, if you post at odd hours, you may not get that many responses, but someone somewhere will try to help you, so don't hesitate.:cwds:
     
  8. caspi

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    He actually said to fire my endo if he wouldn't give the blood ketone strips. Period. Some people would call that blunt. I thought it was helpful. ;)

    I honestly believe that some people that come on here have a preconceived notion that people are rude and are ready to pounce if the least little thing is said. And THAT is sad, because they are the ones losing out on a lot of extremely knowledgable people with a lot to offer. :cwds:
     
  9. Fixee

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    Well, I think I did most of what the OP suggests in my first posts here (less than a month ago at dx time). It took me longer to make a sig, so I was deliquent slightly on that count.

    I too was a bit taken aback at some of the responses I've received here. I considered leaving the site (and did stop visiting for a few days). I'll paraphrase the posts (and probably make them sound worse than they were) but it was something like:

    Me: "I'm freaking out because my son is showing low signs and I can't keep him awake while driving."
    Respondent: "There is no logical or medical reason for what you did."

    Which I read as: "You are an idiot." Even though he probably meant: "Calm down."

    Another example.

    Me: "My son's weight gain is alarming me and I'm not sure if it's unhealthy."
    Respondent: "You seem obsessed with weight and fitness. And before dx you were pushing your son for being 'lazy.' Maybe now you'll now better than to disregard and invalidate his feelings."

    Which I read as: "You are an awful person." Even though he probably meant: "You are an awful person."

    :)

    The lesson here: Diabetes may grant you a honeymoon period, but Children with Diabetes will not.
     
  10. caspi

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    To be totally honest, comments like this piss me off. You've been on this site for less than a month and to make such a blanket statement is uncalled for. You came here looking for support and advice and were given both. However, you also made a few controversial comments regarding your son and his weight gain and were questioned about them. For people to care enough to question you isn't a bad thing. You might not agree but instead of looking at it as "I'm right and they are wrong", keep an open mind. It will get you a lot farther in life. :cwds:
     
  11. Fixee

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    Caspi, I'm sincerely sorry. I thought it was a funny remark (in fact, I used a smiley to indicate I was trying to be lighthearted).

    But I have to asked you something, because I am perplexed. There are at least 3 or 4 other posters in this thread who made "blanket statements" about how harsh this site can be on new members. For example:

    You did not jump on this person for her characterization. She went on to say

    This person is about as new as I am. All I did was to agree with her (and with her friends who warned her about CWD). But you chose to attack me rather than any of these other users?! Why did you choose my "blanket statement" to single out and none of the others? I don't see it as any more or less provocative. You didn't say to her post "how dare you say it's harsh and rough... you've only been here 3 months!" Nor did you say, "how dare your friends warn you about cwd... they're not even on the site!" You just attacked some guy on page 3 instead...

    Please refer me to the controversial comments I made?! I am not disputing what you say. I just don't know what you're talking about. As a newbie, I probably don't realize when I say something that's "controversial."

    I was "questioned about them??" Someone reminded me of my poor job pre-dx in recognizing T1D, in a different thread, and said something to the effect "I hope you've learned your lesson." I didn't take it as a question.

    So, to sum up, I agree with the several people above in this thread that this forum can be harsh for newcomers. Was your post above intended to disabuse me of this perception?
     
  12. Jason's mom

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    My thanks to Nancy for extending grace and for sticking with her effort to get her point acrosss. :)

    I learned 19 years ago to have pretty thick skin with comments that some people seem to think are appropriate (see my sig). I'm not easily offended. I tend to believe that most people mean well even if they don't realize how a comment may have come across. That said, I do agree with Nancy.

    Here's an example I'd point to... Another mom with a newly diagnosed toddler was told a number of things, including a comment that said basically "you should do x, but if you don't want to, then, whatever - it's your kid's health". Of course that new mom was concerned about her child's health. And, of course, the poster probably didn't mean that they really believed she wasn't. In the end, though, that mom found a Facebook group instead and decided to leave CWD behind. (I don't mean to imply at all that her decision was based on that one post.) I just think it's sad that some people feel like they are not welcome, because there is a wealth of knowledge here.

    I tend to not post questions. Perhaps that's a bad decision on my part. It just seems easier, sometimes, given some of the conversations I've seen here. Bottom line, though, here's my situation... I'll be doing all of the D stuff forever. Jason will not be able to take on any of his own care. The folks here have the potential to teach me things that Jason won't be able to tell me. I'll work to be more willing to stick myself out there while assuming the best of everyone. It would be nice if folks could also work to sometimes filter a bit and remember back when they weren't the experts they are today. :cwds:
     
  13. caspi

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    Fixee, I am truly baffled that after posting here for just shy of a month, you are so critical of a place that is just simply trying to help you. I looked back at your posts and I didn't see the negativity that you claim here....

    Me: "I'm freaking out because my son is showing low signs and I can't keep him awake while driving."
    Respondent: "There is no logical or medical reason for what you did."


    That thread about your child falling asleep in the car had 29 comments that were all supportive. However, this is all you took away from it?? Really? :confused:

    And your other example....

    Me: "My son's weight gain is alarming me and I'm not sure if it's unhealthy."
    Respondent: "You seem obsessed with weight and fitness. And before dx you were pushing your son for being 'lazy.' Maybe now you'll now better than to disregard and invalidate his feelings."


    I searched and couldn't see where anyone said anything close to that. :confused:

    I also couldn't find any reference to this..

    Someone reminded me of my poor job pre-dx in recognizing T1D, in a different thread, and said something to the effect "I hope you've learned your lesson."

    After going back and reading your previous posts, I just don't see where all this negativity is coming from. You have received a lot of great support and information.
     
  14. Melissata

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    I also agree with Nancy, and know a few people that have come and gone from here as well because of the tone of some replies. I see it myself all of the time, when i just cringe that some people are so blunt, especially with newbies. Maybe some people treat these forums completely different than if they were actually meeting and talking to the person, but I think that maybe we should try to do that. I have met people that really don't seem to know what they are doing, and I may try to educate them a bit, but I try to do it in a way that doesn't make them feel like they are bad parents or stupid.

    Maybe some people that have been doing this for so long have forgotten how far they have come, and rush to answer without thinking much about how their answer will sit with the person asking. I also see people asking questions of the op that were already answered in the post, so that is what makes me think that people are answering in a rush. There have only been a couple of times where I felt someone was snarky with me, but I have read other posts that I knew where going to be hurtful to someone.

    I come here because the people on these boards seem to keep up with the latest news, and I have learned more here than any other boards that I have visited. I also send people here when I see them posting about things that I have seen here. I hope that this thread can stay civil, and really make a difference here. If even one person has felt bad because of how they were "talked" to, then isn't it worth thinking about instead of justifying it. That one snarky post can cancel out 20 that were helpful.
     
  15. Amy C.

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    This post has me thinking that I may be one of the folks who is contributing to the problem.

    My son is in college now and this website is for children with diabetes. Not many post on issues their child is having in college, although, based on what my son is going through, I am sure it is a struggle of a new type.

    I often see where I can offer information, but I am not wordy in my reply, nor do I try to assess the emotional state of the OP. My replies may come across as less than conciliatory.

    In truth, it takes time to write a longer, thought out reply. Some are quite excellent at doing this. I am not. 15 years of living with diabetes makes one develop a bit of a shell and an attitude.

    I plan to step back a bit. If I can't take the time to answer fully, I shouldn't say anything at all.
     
  16. Mish

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    Might I suggest that it isn't the tone of replies but the constant back and forth bickering that wears people down and sends them screaming, pulling their hair out? If you think someone has said something offensive, fine, but once you've made your point there is no need to keep up the back and forth crap.

    This thread had many good intentions behind it. Sadly, it's devolved into a he said/she said bout of irritation. Another good thread gone bad.
     
  17. Lee

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    But that shouldn't matter to us folks who have been here a while, right? I mean, it isn't like experienced posters disappear hand over fist because they are SICK of being reprimanded for the slightest imagined offense over everything they type.
     
  18. danismom79

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    Good grief. :rolleyes:

    My bit of advice for newbies is to (1) introduce yourself, and (2) unless you have an emergency or are otherwise very eager for some advice, take a little time and lurk for a bit. See how people interact, use the search function, familiarize yourself with people's posting styles, realize that not everyone is a virtual "hugger" and some people are way more straightforward than others.
     
  19. Sarah Maddie's Mom

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    Amy, it would be a mistake for you to "step back" :cwds: Too many of the people who actually reply have stepped back and the proportion of those who contribute, to those who don't, is already out of balance as a result.
     
  20. MamaC

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    Thread of good intent + people with residual knotted britches = missed point.
     
    Last edited: Dec 6, 2012

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