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It sucks, but...

Discussion in 'Parents of Children with Type 1' started by TimO, Oct 21, 2008.

  1. TimO

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    I know it's easy to feel sorry for ourselves, and it sucks that our kids are being cheated out of a "normal" childhood, but I can't imagine what it was like for kids just 20 years ago. If anyone has reason to be pissed at D it's parents who were dealing with infants/toddlers/adolescents just 20 years ago before the pump and meters giving blood glucose readings in only 5 seconds. What a dream these things must have been. And celiac is a constant concern of mine, and I know many of you deal with it, but I don't believe it wasn't even diagnosed in the 80s. Think how many of those kids were in constant pain not knowing what a gluten-free diet was or the relief it could give.
    I know, it's not fair, and I hate poking my kid constantly and making a 6 y/o boy be repsonsible and account for his snacks, etc. But it could be worse. As much as I hate paying the medical insurance premiums of $800/mo, deductibles and all of the prescription costs, I'm thankful it's 2008 instead of 1978.
    Sorry, just had to slap myself into reality. It's the hand our kids have been dealt. We can fold, or we can hang on to every last bit of hope...
     
  2. nymomof3

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    You are right TimO,

    And hopefully in 2028, some people will be saying the same thing you just did about our kids!:)

    "Remember back in 2008 when kids with Type 1 diabetes had to use bg meters and pumps and so on..."

    Just think how far things have come in such a short time. Our sons are young
    and will see great advances in their lifetime.

    I smile everytime I see the picture of the man wearing that giant insulin pump on his back - because that technology led to the very small pump my son wears on his waistband!

    Thanks,
    Peggy
    Mom of Dan 14 non-d, Erin 13 non-d, and Kevin 11 dxd 3/11/08 pumping with mm522 since 10/02/08
     
  3. twodoor2

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    I'm grateful it's not 1908, only 100 years ago, before the invention of synthetic insulin.
     
  4. grantsmom

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    Tim,

    You are SOOOOO right on. There are many days I ask why why why.

    When I read the book, Think Like a Pancreas, I was SHOCKED to hear how the author treated his D in 1984. (The year I graduated High School). All I could think to myself was oh my gosh...what if I had been diagnosed at 12 way back in 1978...what would me and my parents have gone through... and then I am grateful for all the advances that have been made that help my son.

    There has been such great strides made...I gives me and my family a lot of hope.
     
  5. Jordansmom

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    I often think back to my SILs experiences back in the 80s and how difficult managing her diabetes was for my MIL. It blows your mind how little info and technology she had. It was really all crisis management. And getting up at night to test is no fun but it beats lying awake all night just listening for a low seizure (which is what my MIL did all during the hormonal teen years).

    My MIL expresses to me now all the time how lucky I am to even have the amount of info and knowledge I've acquired over the last few months. Let alone the technology. We complain about meters and the amount of blood we need. My SIL wasn't told to test very often but when she did, it took a huge drop of blood that had to drip off her finger onto the giant pad. Then the pad had to be put under water for a period of time, blotted and pushed into the meter. Then a 5? minute wait. If you didn't do everything just right, you'd have to start all over. The lancets were little razors that cut more than they poked.

    I see a big increase in the amount of "work" required on MDI and pumping, but so much better quality of life and management. I feel very fortunate (if you can use that word with D) to be dealing with it now.
     
  6. sam1nat2

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    I agree!!
    Our mm rep was telling us that when he was in school to test bg, he would have to pee in a cup and add tablets to it, only to get a range 60-150. Then his wife was telling me about how when he was on NPH, how she had to have dinner at the right time.

    Now we are complaining that companies won't cover CGMS, I can't wait to hear what is next!!
     
  7. Jordansmom

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    Not only did my SIL have to eat at exactly the right time she had to eat a certain amount and she would cry all the time to my MIL that she was still starving and all she was allowed to give were "free" foods at the time which were cucumbers, lettuce, celery. And anything with sugar was forbidden. We complain about having to say "no" or "You'll have to wait" once in awhile. All my MIL ever said was "no" all day everyday because it's what she was told she had to do to keep her daughter alive.
     
  8. jcanolson

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    I totally agree. The advances in diabetes care in just the past few years are amazing. But, it is still tough, and this is one of the few places where I can whine every once in a while and somebody gets it. That doesn't mean I'm about to throw in the towel. It just means I'm a mom who's frustrated and dealing with issues that not many people really understand - except for my friends here at CWD.
     
  9. miss_behave

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    The sad thing is that some people still treat their diabetes like its 1984- using antiquated insulin regimes and having strict meal plans, not testing very often and often having seizures and DKA. Sadly, not everyone has the money or even the intellect or the access to education that we have and I'm not just talking about people in third world countries. :( I'm shocked to see how some people I meet treat their diabetes. Your kids are so lucky they have parents like you :)
     
  10. StillMamamia

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    Yep, things have sure come a long way. I cannot imagine how it was before.
    Still sucks that our kids (any kids) have it though (or any of the other diseases).
     
  11. deafmack

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    Diabetes care has sure changed. I remember taking care of a little girl back in the early 80's with type 1. She was friends with another girl I was babysitting for. No meters. Urine and tablets. Hoping that one did not see bright orange. It was guesswork at its worst. She was on a strict eating schedule and strict food allowance and MDI which of course was regular and NPH. Boy times have changed. When the first automatic lancing device came out it was called the guillotine by many people who used it, but it was a great improvement from the razor blade lancets one was required to use.
    Knowing this makes me so grateful for the new technology out today that makes living with D so much easier.
     
  12. MyAngelEmma

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    Just wanted to say thank you for the reminder that things could be worse. I try to remind myself of this but it is easy to focus on the negative of things we deal with on a daily basis with D in our kids lives. I appreciate the post. It is just what I need to remind me to be thankful for what we have every single day. :cwds:
     
  13. Mama Belle

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    My dad reminds me of this regularly. In his life span he will have gone from boiling and reusing glass hypodermics (and re-sharpening the same needle for use over and over and over again) to using an insulin pump. He has used every kind of insulin imaginable and was told he wouldn't live to see 21 when he was diagnosed. When he was young he was really poor and refused to buy himself a pair of nice shoes until he was married to my mom and almost 30 because he was convinced he was still going to die and a dead man doesn't need fancy shoes. Things have definitely come a long way.
     
  14. czardoust

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    Mom was dx'ed in 1960 (age 11), her sister also in 1950 (age 8), and they remember boiling the big, glass syringe (the one and only syringe which was like 15 gauge) before each shot, using beef insulin, which made them nauseated every time. And you had to guess the dose, which taken once or twice a day because urine test strips werent even available to them at the time. Insulin shock was common, my aunt had so many more than mom did because she dx'ed at a younger age. They got urine strips in 1965 and in 1980, BS testing came along, then 1982, the "home BS testing kit" came out. I remember mom getting hers in 1986 when I was 16!

    I just cried. Mom was told her lifespan would be 40, and that pregnancy would be not in the picture. Well, she did have one miscarriage before me, but she made sure she had me when she was young (20) because she was afraid she would not be able to see me grow up if she waited. Thats so in the dark agers now a days, and so tragic that our parents had to think that! :(
     
    Last edited: Oct 22, 2008
  15. Aidan'sMom

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    A few things that I remember when I was a little girl and staying with my T1 great grandmother.....she would check her BG with a razor blade type lancet and put her blood on the end of a huge strip that gave her a color, not a number. No meter. And she only checked her BG about 2 times a day I believe. The insulin needle was huge and her supply case was about the size of a tackle box. I don't remember if she had to boil the needle then or not. I remember she had to roll her insulin in her hands a bunch. Every dessert was made with equal (yuck). We ate breakfast at 6:30 sharp, lunch at 12:30 sharp and dinner at 5 sharp. This would have been in the 80's. Probably '85 or so. I am not sure how far back I remember.

    Just want to add that she was dxd at age 11 and just passed away last year at the age of 94!!

    ETA: Did the math, she was born in 1913 and dxd in 1924. Wow. Wonder how she felt from 1924 to the 80's??
     
    Last edited: Oct 22, 2008
  16. clb1968

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    I have been diabetic for 18 years and I have seen all kinds of change.
    I was an adult when diagnosed, so my mother did not have to deal with a child with diabetes.
    My aunt did. My cousin was diagnosed at 4 yrs old around 1971, I barely remember her, but I do remember seeing her test her urine , give herself shots and also spend alot of time in the hospital , very brittle , unstable ,diabetes.
    My cousin did not have the advantages with her diabetes that anyone diagnosed today does. She passed away in 1978, at 11 , she slipped into a diabetic coma and never came out.

    I am very thankful for all that has come since that time, even when I was first
    diagnosed, my meter took about a minute total to get the bs reading, but at least I knew what is was, besides what I was feeling at the time.

    It sucks that anyone has to have diabetes and at times it is just not fair.

    I have a great life though and would not change much, I have two great kids ( one that I had after my diagnoses) and a loving spouse.


    I am starting to ramble , so I will check my blood sugar.

    5 seconds later a perfect 100:cwds:
     
  17. clb1968

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    I think I still have my quillotine in a box in the closet , I gave the first meter to another diabetic , when I got my first one touch, so that I dont have.

    I was on NPH /Reg until about 6 years ago and on the strict eating scedule.
    3 meals and two snacks to cover the peak in the NPH and I still had some nasty lows.:eek:
     
  18. TimO

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    Man, I forgot all about those "razor blade" lancets from my youth ('84 hs grad - actually not long ago they were still using them). Those hurt so bad you wanted to smack the nurse, and I had it done maybe once a year. Charlotte, and everyone else who's been living this for years, you are the inspiration and hope for me as a parent. If you could do it and still have such a positive outlook, I can do it with the modern day medical devices we have to assist us. Thanks!
     
  19. LJS118

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    I once read an old old book of my late grandmother's from a bit before 1900 and it said the life expectancy of a person with d was about 3weeks :eek::eek: that's right...there was no insulin then
     
  20. czardoust

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    I believe it. My grandma Brown has told me about when she was a girl living in the cotton mill village, she had a neighbor who was a young teen in love with her young teen boyfriend, her parents told her they could get married because "she had gotten sugar" (was probably recently dx'ed) and wasnt expected to live to age 20, and they wanted her to experience as much out of life as she could before she died.:(
     

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