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Re: [diabetesinsipidus] help with "Why do I have NDI?"

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  • Earl Carlo Lazaro
    Nina Clock wrote:Jody, I read some of the tales from you parents with small children that have some form of DI and my heart just aches
    Message 1 of 6 , Dec 11, 2003


      Nina Clock <ninaclock@...> wrote:
      Jody,
      I read some of the tales from you parents with small children that have some form of DI and my heart just aches for the little ones.  As an adult who was diagnosed with CDI when I was seven, I can only share my feelings and tell you how my parents seemed to convince me that having "just" CDI is only a little bump in a very long road.  Looking back, I wouldn't have changed anything my parents did for me.
       
      I am an only child and so had no other syblings to compare myself to.  I do know that my mom worked overtime to educate my teachers about my condition in order to help them to understand why I was urinating and requiring fluids all the time.  In the early years of my diagnosis, regulating my CDI was quite a chore.  I was tired ALL the time and falling asleep in class as well as requiring frequent trips to the bathroom (every 15 minutes).  Early on teachers thought I was goofing off and would refuse me a trip to the restroom which resulted in wetting my pants.  Once the teachers were "on-board" I was less of a target for ridicule.
       
      My parents made sure that I participated in everything other kids participated in including overnighters and trips to Girl Scout camp in the summer.  Thank goodness a registered nurse was available and she was thoroughly aquainted with my CDI and the administration of my shots.  Getting me in the mainstream and allowing me to participate in everything else other children participated in made me less likely to focus in on the "woe is me" attitude and instead, made me forget I was "different".  My parents made me feel I was special because I was their one-and-only and not because I had this weird disease. 
       
      With my peers, I concealed my disease as I feared criticism and non-acceptance.  I found this worked well for me and only until I knew I could completely trust anyone would I share my disease.  As an adult, most of my associates don't know I have CDI and only my close friends know I have it.  When I take out my DDAVP to take a "snort" the common response by people is I must have allergies, to which I politely nod and move onto the next subject.
       
      I am not completely aquainted with NDI, but do know we share the same sypmtoms with completely different medications.  All I can tell you is try to make him as comfortable with his disease and help him realize that there are far worse conditions that one must deal with.  Yes, he's different, but then so are so many of us.  It's important that he knows NO ONE is perfect in this world and that whatever imperfection we may have been dealt, it only makes us stronger and more interesting individuals.
       
      Wishing you and your little one all the best,
       
      Nina

      elisoneditor <elison@...> wrote:
      Eli, who is now six, is asking about his NDI. Not the particulars (he
      understands pretty well for his age the symptoms and details about his
      kidneys), nor about the physical reason why he has NDI (he accepts
      that he was born that way), but lately he's asking the "Why do I, of
      all people, have NDI?" His little brother does not have NDI, and he's
      expressed some resentment that he's the only one in the family that
      has to deal with it. He's definately entered a 'life isn't fair" stage
      of thinking, and as a parent, I'm clueless as to how to respond to
      this wisely. I'd love to be able to guide him into a pragmatic
      acceptance of NDI without diminishing its impact on him ("I've got
      NDI, it sucks, but let's move on"). Is that even reasonable?

      As a parent of a child diagnosed with a medical condition, I went
      through a why me stage, and came out with only guilt for feeling sorry
      for myself when here's my child who will have to live with it as a
      reality. As an adult, I'm also able to rationalize that things just
      happen, for no particular reason, and that's what life is all about.
      But that's a hard philosophy to teach to a child. Do I stress that
      others are worse off? That's he's pretty lucky to be living in a
      country with adequate medical care to ensure a healthy life?

      What should I tell my son? I'd love any suggestions anyone can offer.
      Thanks,
      Jody



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      Thanks for the words. But I am not the parent of a diagnosed DI patient but I am the DI patient and I did this so that I could be informed on how to deal with this problem of mine.  Because I can't even buy my own medication just the drug called "diabenes" that surely costs less than that drug that you are using right now. All that i do is "control my drinking habits or put it a limit so that I won't urinate too much". And when I am in for a long ride, I don't drink any liquid for 1 hr. before the ride, just chewing gums and candies so that my thirst would fade away and I carry my own water canteen so when I am half of the way to my destination, I will drink it all up and then I reach for my candies again. If you could help, please, just PLEASE help me of carrying this burden of mine that's all long giving me sufferings.


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    • Earl Carlo Lazaro
      Magneto9@aol.com wrote:Hi Jody, six is a tough age, so very young, and it s hard to know exactly what he is dealing with. My son was around 12 when we first
      Message 2 of 6 , Dec 11, 2003


        Magneto9@... wrote:
        Hi Jody,
        six is a tough age, so very young, and it's hard to know exactly what he is dealing with. My son was around 12 when we first had to deal with it. I never told him others are worse off, I firmly believe that we all know that, but no matter what the issue, we need to grieve, so to speak. I just always agreed with my son that it sucked. I don't think it is a let's move on thing. I think he will, in my opinion, probably go through the why me, and this sucks, stage, repeatedly as he grows up. I think just letting him talk about it and listening is the key, as it is with all kids no matter the situation. Heck, adults too! I also want to stress to keep an eye on his mental health along the way. A lot of people with lifelong illness deal with depression. And unfortunately no age is too young.
        Yeesh, that was my two cents!!!

        Vicky


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        Another one, I am not the parent but the DI patient. I join this so that maybe I could find cure of my disease my own way. That is because my parents don't take my disease much because I am not taking any medicne that would cure me. Alll in all, it's just SELF-CONTROL. And if you could hel[ me in someways... please lend me some information that would help me.

                                                                                                 Earl Carlo Lazaro


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