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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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    There have been some really interesting comments and they have made me realize that much of my OP has been spurred by reading things on CWD AND on FB and people's blogs.

    I guess when people blog about D they are trying to reach beyond the D community. I understand wanting to "get the word out", but somehow I can't help but feel that in ramping up the "Danger, Will Robinson!!" stuff that we run the risk of making our kids look "sick" and fragile and in all honesty that bothers me.

    And too, I can't imagine that those who don't live it ever get it. Rather, I suspect that they just see us as sort of neurotic and hysterical.
     
  2. Lee

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    Stop talking about me like that...If I have told you once, I have told you once that I am only slightly neurotic...and completely hysterical.
     
  3. hawkeyegirl

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    Yeah, but if you take the alcohol out of the equation, you're not THAT hysterical. (But probably more neurotic, so I guess it balances out.)
     
  4. Dmama24/7/365

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    I can only speak for myself of course. I do blog about the "realness" of it. But I also discuss how hes still top of his class, still swims, still does track BUT I mention how much work entails.

    Theyre not sick and fragile but they cannot just go the park and play for 4 hours straight without the worry of a low, or the management of a temp basal. It takes work, and I guess for me thats the important point I want to get out.

    BUT I have seen the posts on FB you speak of, drives me nuts!! "Omg he hit 76 I hate diabetes, my life is awful", those kill me.
     
  5. hawkeyegirl

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    If you don't mind, I guess I'd like to ask you why it's so important to you for people to know how much work it is? And piggybacking off of a post you made earlier, why is it important for people to know that he could die from D? (Aside from caregivers, obviously)

    I'm not being snarky here. I'm truly curious.
     
  6. caspi

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    Yes, yes, yes! I will admit I used to post D-related things on FB from time to time and then realized, after reading so many other D-related posts on there, that I needed to stop because I was sick of reading it all, lol. And if I am sick of it, what are people that DON'T have children with D feeling reading my posts?

    I wanted to add that I was talking about the "gloom and doom" D posts...
     
  7. colebenmom

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    Yep, this.

    I have a couple of very good friends that spend a lot of time with me that probably "get it" but I don't think I ever could have if I didn't live with it.

    That aside - I do want some people to "get it" like my parents, and maybe my brothers because a break would be nice and I don't think people that don't realize how hard it is think you need a break. I'm working on asking instead of waiting for offers :p and my mom has finally taken the kids overnight for the first time since dx.

    Other than that, I like to panic, for the most part, on the inside.
     
  8. Dmama24/7/365

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    Well the he could die from it part, Im usually referring to lows as they are an immediate cause for concern. I want people not just my friends or family but others to know what the signs are and how maybe they could save a life one day.

    Ive actually heard stories of PWD having an extreme low and no one helped. No one knew what to do. Just like I would like to know what to do if I encountered a lost autistic child, or person with epilipsy I think its important for people to know what to if they encounter a type 1 who NEEDS help. I actually was told before "so if theyre low give insulin". WHAT?! To think if someone decided to do that, they could kill that person. So I feels its my duty as an advocate for this disease to educate as best I can.

    As far as how much work it is? Well thats complex. People have asked, people have assumed you bolus, or eat some sugar and all is well. Well thats not the case. Friends have asked why is he sitting down? I want them and again strangers to understand things that things may be simple for non D kids such as swimming or running in the yard arent always for our kids. Thats why they see us do a, b, or c.

    I blog to vent, but more so to spread awareness of 1) the difference between the different kinds of diabetes 2) to maybe help a newly dxed family 3) to bust those myths that are perpetuated by the media.

    Did you know Oprah said "I pricked my finger, didnt really hurt. Not a big deal". Are you kidding?

    I truly believe if we want a cure, awareness is key. People will not donate, advocate or see it as a NEED for a cure if they dont truly understand the complexities of this disease.

    But again to each his own. I have my blog, have done radio and tv spots and work in the community educating as well. I feel its important. Doesnt mean that everyone has to do the same.

    Not being snarky either, just very passionate :)
     
  9. Flutterby

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    I agree with everything you said, Sarah. I remember going through all the different stages people have talked about.. you DO get to a place where it is what it is, you don't freak over every little thing, you go with the flow, and you could give a flying fig what Joe Shmoe down the street thinks.
     
  10. frizzyrazzy

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    The people that "get it" ..got it about 2 days after dx. The people that didn't get it then, still haven't gotten it. So I could probably talk till I'm blue in the face and try to 'educate' people but it does no good. So..I no longer care if people don't understand diabetes. There are a lot of things I don't understand; dogs, kids that dance in 30 different dance troupes, people who don't vacation, etc; and yet I maintain friendships people people who are like that. IT's ok for them to not understand diabetes because it's simply not important in their lives. That doesn't mean I am not important, or that my child is not important, it means that diabetes holds no real meaning for them other than it's something my child has. Period.

    And so for me, I've got more important things to do than to run around like a chicken with my head cut off. Or waste one more bit of breath trying to make people notice that I'm not sleeping at night because I'm checking BGs.

    I'd much rather be known as "hey, that Michelle, boy she has a lot on her plate but she manages to keep it all together you never hear her complain" vs "Boy, poor Michelle, she's got it SOOOOOOOO bad...."

    But that's just me. I suck it up and go on.
     
  11. caspi

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    Well said, Michelle!
     
  12. hawkeyegirl

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    Okay. I understand where you're coming from on this. I have never heard of anyone dying from an unassisted low (except at night, where people's awareness isn't really going to do any good), but I understand what you're saying. Personally, I'm afraid that no parent is going to want my kid at their house playing if they think he's at risk of keeling over any second, but maybe that's just me. Basically, if my son is so low that he can't eat, really, the best I can hope for is for someone to call 911, which I hope is just common sense.

    Okay. I guess I just don't care if people think it's easy or not. Difference of opinion here. ;)

    My understanding that the number one issue doctors have with type 2s is getting them to check their BG. They simply don't want to do it. I think Oprah's quote was aimed at them. Basically, "Check your BG. It doesn't really hurt. Do it. It's not a big deal." She wasn't saying that D isn't a big deal or really making a comment to T1s at all.

    Well, that is probably true. JDRF certainly trots out the sob stories with their pictures of sad little children in their literature, and it works. It is hard to convince people to give money without telling them how hard this all is. I think that's actually the most compelling argument for "awareness", and it's the one I struggle with the most. It is not in my nature to ask for sympathy or talk about how hard this actually is, and I probably am failing "the cause" in that regard. :cwds:
     
  13. obtainedmist

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    Great thread! We are very matter-of-fact about it to others (but we have that luxury also because Molly was 17 at dx and is a smart cookie who can handle the complexities very well). In addition, I have an in-law and parents who are in their 90's and 80's respectively and are world class worriers. We usually down play EVERYTHING so that they don't horribleize things and make themselves sick with worry. And we have a firm rule in our extended family that only one person can fall apart at a time! So far, so good! :)

    I think the best reason to educate others is to get more interest in type 1 which translates to more resourses, inovations, etc. I can talk about the mechanics of type 1 and the way the pump works ad nauseum because I'm really interested in the biology and technological improvements. But for support, I know who to go to and don't waste an ounce of energy trying to get others to feel my pain!
     
  14. Dmama24/7/365

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    I totally get that! Its great that we can "live the same life" but do it differently.

    The great thing is it works for me and other D mom bloggers and thats ok if it doesnt for you. We all cope differently in life, D or not.

    With all my blogging reasons explained while I may post an occasional FB update on a BAD BAD day, I dont do this all the time and I understand the whole "dramatics point". But again we all react differently, as do our kids. So we dont know that persons situation.


    As far as "sucking it up" I dont feel like this makes me less strong or my son appear weaker. Just the opposite actually :)
     
  15. BKKT10

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    I have some friends on FB that are strictly "D" friends and to be honest, even I get sick of their posts about D. And I live with it 24/7 and can relate most of the time. I can only imagine how annoying it must be to their non-D friends. Seriously, your kid woke up in the 200s. Give them some insulin and move on! It's not the end of the world!

    I agree, it's not all life threatening. It's diabetes, it's the nature of the disease. Our CDE tells us we do a good job with our daughter because we kinda "roll with the punches" and make adjustments as necessary. Yes, low blood sugars s*ck and they scare the crap out of me, but they also make me more aware and more cautious and probably a better caretaker for Kaylee.
     
  16. Dmama24/7/365

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    I dont complain I educate and explain.I thinktheres a big difference. Not saying this was directed at me, just that, just because some of us do takethe time to do those things doesnt mean we are playing the victim card. Although I do know those who do ;)
     
  17. swellman

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    I agree with the OP that it wouldn't hurt to sit back and take a breath and reflect if the situation is really all that critical and zOMG!!!!!! worthy.

    There are times I have read posts and I think to myself "Really?!? They came here for advice/help instead of 911?" Maybe the situation wasn't that serious but it was written as if it were.

    On the other hand, if someone has no where else to go we can't criticize them for coming here.
     
  18. RosebudMama

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    Hello :)

    I'm a blogger, so I thought I'd drop a quick reply to this discussion. I don't post very often here, so bear with me. Thanks :)

    IMHO, "T1D Dramatics" isn't anything new. Social media popularity is. My daughter was dx almost 6 years ago and it took about 2 years before I started seeking out online connections. At first I just lurked around -- trying to figure out if I was validated or just a "loser" for feeling defeated all of the time.

    Once I started seeing that other parents were dealing with the same issues that I was struggling with, I began to feel more comfortable participating in various online forums.

    Today, when I see FB blowing up with highs, lows, and drama...I reconcile in my mind that it's the same drama that's always been there. It's really the same stuff I read over and over when I was just a lurker. The difference is that it appears more abundant because it's all clumped together and moving at a fast pace. Does this make any sense?

    Anyway, onto the blogging thing...I started my blog in 2008 in an attempt to remain connected with loved ones far away (note: I changed my URL in 8/10 so my current blog doesn't appear 3 years old). You see, I'm alone here. Well, not completely -- I do have a very loving, involved husband. But he's gone 14 hours a day and he's a full-time student working towards a career change. I don't have family nearby and my friend's are too busy with their own lives to be concerned about the details of T1D.

    Initially my blog was a venue to share updates and pictures...after other bloggers from the DOC found it and started leaving comments, I realized that it was becoming a way to gain the support I felt I needed through sharing similar life experiences.

    To the DOC, my blog may appear as though my entire life is wrapped up in diabetes. The truth is that I actually have 2 FB accounts -- one for the DOC and the other for "real life" friends/family. I also have 2 blogs -- one that focuses on life with D and the other that focuses on the joy in my life (and, yes, sometimes D finds it's way in there as well.)

    http://ayearofroses.blogspot.com/

    Why do I blog about diabetes? Honestly? Because I want to. I'm passionate about it and I enjoy the friendships I've made through blogging.

    Some people knit, read books, play sports, or get into online gaming...I blog. It's my hobby.

    Along the way, if I can help another mother find the support she's looking for...or help advocate for a cure...or dispel media myths, or help spread awareness and gain support for the estimated 100,000 children who are in need of assistance to access insulin (http://www.candyheartsblog.com/p/life-for-child.html)....then all the better.

    I would encourage anyone who doesn't like the way T1 is being portrayed in social media to start your own discussions (such as this one!), create your own FB pages, and start your own blogs! I believe there is an entire parent population out there that needs you...you're the support they're looking for. And, just because you may not agree with (or even like) my blog content, doesn't mean it would be necessary to jab at each other...it just means we're different.

    And I'm okay with that, because there's plenty of passion to go around :)
     
  19. joan

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    I can't agree more with the original op. I am trying to articulate my feelings in a concise post but I am having a hard time because I feel so strongly about the subject.
     
  20. lilysmom

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    I am also a blogger and a mom and a full time career woman and a girlfriend...and a pancreas. I never get on CWD although I have a serious love for Laura and Jeff and everyone that puts this amazing conference they do together. The reason I don't is that I feel like it can be a very judgmental and opinionated place. When I was faced with something I knew very little about...like a diagnosis of type 1 diabetes for my then 3 year old...I wanted to find other people to talk to. I live in a city of 5 million people and it took me three months to find ONE. The first year of diagnosis, I could barely keep my head above water but my attitude and positive outlook never changed. Things occurred though that I found very unnerving such as a friend being afraid to come over due to fear that her daughter would "catch" diabetes. This got me thinking, during the whole second year, that there was not enough awareness for type 1. Unfortunately, money is what brings a cure and awareness is what brings money. People are not aware of what life is like with diabetes or what the signs are. So, I started blogging. It is therapeutic and it is fun.

    Everyone knows the pink ribbon. Everyone knows the red ribbon. Everyone knows the yellow bracelet. Those organizations have enough money to find cures for every disease known to mankind. And everyone knows what all of these stand for whether they have a direct connections or not. Yet when I went to register my child for Kindergarten, the nurse who had been there 10 years had never cared for a diabetic. It's unsettling. The EMS folks don't know the signs and they do NOT what a pump is frequently. I have friends who are firefighters and they suggested I put flyers in firehouses with the signs of type 1. So, I would highly suggest NOT relying on 911 being called to save your child.

    I educate, I vent, I complain at times...but I also talk about how bright, how happy, how full of life and how loving my daughter is. We are not just about diabetes but it is a huge part of our lives. When I am at work, in the back of my mind, I am wondering what her numbers are doing. She goes to playdates alone but there is always a fear that she may get so low she will start seizing...she may not DIE but a seizure is no joke and can do serious damage to your brain. Luckily, we haven't encountered this but I have PLENTY of friends who do frequently.

    Point is...we all do things differently but how unfortunate that someone that has walked in your shoes would ever pass on judgment on ANYTHING we do. We are all just trying to live our lives and do our part. That's all.

    Kimberly
    www.mealmommy.com
    www.mealmommy.blogspot.com

    Mom to Lily, age 7, dx'd 10/07 and Abby, age 5, non D so far!
     

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