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JDRF describes Type 1.... very negative

Discussion in 'General Discussion' started by BrokenPancreas, Jul 25, 2010.

  1. BrokenPancreas

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    As horrible as they make this sound, then they should fight that TYPE 1 should be considered a disability, like depression.

    There are many Type 1's that really need this, and since there "quality of life" is so bad, then why should they NOT GET it, and someone with a "back problem" get it!
     
  2. emm142

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    Eh.. I'd rather they said this, got money and cured us than that they made out it was all wonderful. Who would donate to them then!? New JDRF message: "Children with diabetes are happy and healthy, and if they get the right amount of insulin they will live long lives like everyone else, with no negative impact on life quality."

    I suppose the only other option would be describing everything: "Children with diabetes have to test their blood sugar many times a day, and recieve multiple injections each day or wear an insulin pump." It doesn't seem quite so powerful, though.

    Not quite sure what you're getting at here... Type 1 IS considered to be a disability, is it not? That's why you have 504s, etc.?
     
  3. hawkeyegirl

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    I agree with Lisa 100% on this. (Well, I wouldn't call her fat or old, and I'd be pretty cranky if JDRF called her that, but the rest of it, I'm on board with.)

    There's something so loaded about the phrase "significantly reduced quality of life" that just kind of raises my hackles. Diabetes makes Jack's life harder, and at this point, it makes MY life a lot harder, but do I feel like our quality of life is significantly worse than it was before diagnosis? Not in the least. We are happy, healthy, and have generally great lives. Yesterday we took the train into Chicago, had a picnic in Millenium Park, went to a bunch of activity tents, came home, swam in the neighbors' pool and all went to bed tired and happy. I wouldn't trade our quality of life for anyone's.

    I understand why they do their "doom and gloom" dog and pony show for fundraising, but I agree with others that that particular phrase is, at the least, not applicable to this type 1 family.
     
  4. swellman

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    Maybe we are different but I would never purposefully communicate my true feelings for the disease to my child. Up front we're very positive and convey the message that he can do anything he wants - it's just a few more steps and a little harder but, privately or secretly as you call it, we keep most of the cold, hard facts to ourselves. Maybe if and/or when he becomes non-compliant we might start mentioning all the possible complications but, for right now, we feel he's better off not having to worry about them. Our family is happy, fun-loving and engaged in life but it appears we have differing definitions of "quality of life". Maybe I'm the oddity here but I would have laid down a significant sum of cash to bet that if you asked any Type 1 if their life would be better without the disease they would answer with "yes". That, in my opinion, defines a "lower quality of life".

    As for the OP as someone else mentioned it's hard to get funding if the message is all rainbows and unicorns.

    I apologize for the "heads in the sand" comment - it was a result of D moment momentum. Diabetes was particularly sucking at that moment.
     
  5. BrokenPancreas

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    What Karla said!
     
  6. BrokenPancreas

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    In America, some people get a nice amount of money every month for being "disabled".
    They also get medicaid, or medicare, not sure which one.
    This would really help lots of Type 1's who don't have insurance, or who need money to buy insulin, healthy food, etc.
     
  7. Lisa P.

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    Yes, I was having an emotional reaction myself. I get the swellman style so I got over it, but trust me, I know what I'm dealing with here, no rainbows. No unicorns.

    Yes, we're awful different in our parenting styles. My kids certainly know I wish Selah didn't have diabetes. They certainly know I think it's rough, hard, painful, and invasive. Do they know I'm scared? A little. You know why? Because Selah is a little scared, too. So are my other kids. And when you pretend that you are unafraid of a real danger in front of your children, all they learn to do is hide their own fear. I don't want any of us to hide our fear. I want us to deal with it. I don't want to be positive about diabetes. I want to be brave. And I don't tell any of my children that they can do anything they want to do. Why would I tell them that? It's not true, is it? I tell them they can be the best of who they are, if they choose to, which is better than anything they can imagine. But life's not a cafeteria buffet.

    No, I would not tell my three year old about amputations. But if my ten year old met someone with an amputated toe from diabetes, I wouldn't pretend that wasn't the case, we'd talk about what happened and why and how it fits in with our world view. I would personally also never use the term non-compliant, because by the time a kid could be labeled that he shouldn't have to "comply" with someone else's standard about how he takes care of his body. He doesn't comply or not, he chooses. And I would definitely not introduce the idea of complications as leverage in that situation.

    Circumstances of life are not within our control, most times. Quality of life we have some choice over.


     
  8. hawkeyegirl

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    I get what you're saying, but I kind of look at it this way:

    If I won the lottery tomorrow, I'd be happier. No mortgage! No worring about college tuition for the kids! An in-ground pool and lots of fancy vacations! All sorts of awesomeness going on at the hawkeyefamily house.

    But then, we'd settle into what our "new normal" was, and I think we'd end up at the same baseline quality of life we had before. The kids would start fighting over the pool toys. My husband would want to take an Alaskan cruise and I'd want to go to Cabo. The maid would steal from us.

    The same thing strikes me with diabetes. If it was cured tomorrow, I'd be happy. Deliriously happy. I'd take a sledgehammer to the meters, have a huge bonfire to dispose of the rest of the crap, and sleep entire nights. Jack's little fingers could heal, he could spend his days not attached to a machine, and could run and swim and play without the constant checking and adjustments.

    But time would go on and the delirium would fade. New problems and joys and sorrows would come along, and I think we'd again settle back down into our default level of happiness. The same thing happened to us at diagnosis, but in reverse. The crushing blow of finding out your child was diagnosed with an incurable disease. The heartbreak, the tears, the struggles. But as time has gone on, it just IS. Our life is not worse than it was before - just different.

    I don't know. Maybe I'm just in denial, but it truly is how I feel. Jack may feel differently someday, and I will respect that.
     
  9. emm142

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    Ah, I see. Over here, parents of kids with D do get disability allowance to make up for time missed from work for appointments, to care for kids etc. (or to pay for a carer whilst they are doing these things).

    I don't think adults with D should get disability allowance, unless they have other stuff going on. Treated T1 is not debilitating in the same way that severe depression or serious back problems can be... it doesn't stop you from working, so you shouldn't get payments to make up for that, IMHO.
     
  10. BrokenPancreas

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    Hmmm... according to the JDRF it drastically affects your life.:rolleyes:
     
  11. emm142

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    I'm not sure why you're treating that statement sarcastically... It does drastically affect my life. That doesn't mean I can't work.
     
  12. BrokenPancreas

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    Treated T1 is not debilitating in the same way that severe depression or serious back problems can be... it doesn't stop you from working, so you shouldn't get payments to make up for that, IMHO


    Sorry, don't know how to quote.
    I didn't mean to sound sarcastic.
     
  13. StillMamamia

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    I didn't find the description offensive, as this is the reality of many people, I think. I also think this is what works to get donations. Paint a brighter picture and, well, who would really care to donate to people who don't have any problems, really, kwim?

    As for the quality of life issue, well, that's totally subjective. Personally D is a frigging burden but we make do with it and march on. I'd give anything for my son not to have it. It is exhausting, physically and mentally. But do we lead good lives ? You bet. We have the luck to get most of our D stuff paid for. We have access to the modern management tools. We don't let D stand in the way of anything. It's a burden but we have broad shoulders. So, we do have a good quality of life, so does our son. But the burden is always there.

    For some, the burden weighs heavier than for others. For that reason, I don't find the description offensive.
     
  14. Skyefire

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    I think the biggest thing we need to realize is, the JDRF are not pointing fingers at our kids, this is not a personal attack against our kids and how we raise then, or how we deal with this disease, but the disease itself.

    I think they are 100% correct! We need the governments and the powers that be, to know that this is serious, life changing illiness. If we sugar coat it, the funding will end and then where will we be!!

    I have grown up with my mom she has been Diabetic for over 35 years, and she has never had it easy, there are times with it does 100% effect the quality of life, as ANY auto immune disease does, and not just the person with it, but the whole family.

    That does not mean that our kids will grow up having the worst life ever, what is does mean is...no matter how hard we try there life is different and not the same quality as someone without an auto immune disease.

    Just yesterday, DS (unknown to us) pulled a site, because of it, he has spent the last 24 hours since fighting high bg, fighting ketones, having site changes and injections. He is of course cranky and moody. He has a major headache, you can feel the veins in his temple throbbing. He keeps breaking down in crying fits because he just feels so gross. He missed out on swimming yesterday, because of Diabetes, he had a horrible night sleep, because of Diabetes. The poor boy has not a normal day in the 2.5 years since he was dx'd, and until there is a cure, he is never going to have a normal day again!

    That being said he is still growing up and having a great life, he is taught that he can do anything he sets his mind to, and most times we can find a way to get around D so that we can have a "normal" life!
     
  15. Becky Stevens mom

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    My son doesnt remember a time when he didnt have diabetes, when he didnt have to have his fingers poked several times a day or have to count carbs or have to have insulin injections so if you asked him if his quality of life were diminished he would look at you confused somewhat and say "whatta ya mean?"

    He threw a coin in a wishing well recently and made a wish. I asked him after what his wish was. He replied " to get all the fireworks I want" I said "Oh I thought you'd wish for a cure for diabetes" (thats what I always wish and pray for personally) He said "nah I dont care about that" I dont think that we can project our own feelings on our children. Is it difficult for me? Heck yeah! Has it made my own life harder? yep! But I cant say that its diminished Steven's quality of life because that would be taking on too much and saying that he doesnt have a right to his own feelings and thoughts.
     
  16. Lee

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    I think I am on Swellman's side here - I DO think that Type 1 has greatly affected not only my child's quality of life, but MINE as well!

    First, this is not something I would ever tell my child - this is my hidden, inner dialogue. While it is inner dialogue, it is incredibly important to acknowledge it, at least to one's self.

    I f'ing hate this disease. I despise it. It makes me want to puke when I think about it. When I think about the first time post diagnosis that Coco was playing in the dirt, and I saw all those holes poked in her fingers, I cried then, and I want to cry now.

    When I think of the hoops I had to jump through, the stress, the emotional nightmare just to allow my daughter to go to her friend's camp and spend the weekend at the lake, my quality of life is diminished - greatly.

    When I think of how my child will test at night when I am not around, my quality of life is diminished.

    When I listen to her tell me that she doesn't want to wear her CGMS because it hurts, my quality of life is diminished.

    When she starts crying because her belly is so scared from pump sites, my quality of life is diminished.

    When I get to experience the joy of forgoing my doctor appointment so I can buy my child's insulin - my quality of life is diminished.

    When I think of all the sleep that I have missed, all of the bad decisions that has led me to, all the work that I space out on and do half haphazardly...

    When I call her my cyborg baby, looking at her hooked up to all this stuff, I secretly cry inside - yes, my quality of life is diminished.

    And if it is like this for me, the mom of a diabetic...

    But if you want, I can list all of the ways my 12 yr old's life is harder and more difficult when compared to her 14 yr old sister...
     
  17. TheFormerLantusFiend

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    I think Lisa's point about how the term "quality of life" is used is very important. Quality of life is discussed in deciding who should live and who should die. I would be VERY uncomfortable with somebody saying "You have diabetes therefore you have a reduced quality of life."
    When reading the JDRF's paragraph, I wasn't sure if they were saying that living with diabetes itself is necessarily a reduced quality of life, or if they were saying that diabetes can and often does lead to things that reduce quality of life (which I might also take issue with).

    And I do think that it directly hurts us when diabetes is portrayed as awful. Have you ever had somebody say to you, "That's so awful, I would kill myself before taking shots"? Where do you think they got the idea that diabetes is that awful? Where does the hesitancy come from when people don't want to be around us? It's this ablism that insists that disabled life (diabetic life, whatever) is reduced life.
     
  18. hawkeyegirl

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    That is fine for you to think that, but I believe my son's life IS the same quality as it would be without type 1. Different does not equal worse for us.

    I respect those who feel differently, but I'm tired of people telling me how I should feel about my son's life.
     
  19. Mom2Kathy

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    I agree with this 100%. :)
     
  20. Mom2Kathy

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    And I agree with this 100%. :)
     

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