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Prior to dx, how much did you know about D?

Discussion in 'Parents of Children with Type 1' started by sam1nat2, Sep 18, 2008.

  1. czardoust

    czardoust Approved members

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    I had a better than average knowledge of it but actually living it, makes you realize that back when you were "educated" you knew nothing. Tell me if this isnt pathetic?

    1) my grandmother Winchester helped first bring the American Diabetes Association to Alabama in the 1970's, she opened the first diabetic wing in Huntsville Hospital (which was back then the first in the state), and wrote a book that was published in 1978 on how to manage diabetes mellitus. (Its still sold, I found it on amazon.com the other day while just googling her name for fun, I was like OMG this info is so outdated!). She started educating doctors and nurses about D in these southeastern regional conferences so they could take care of their patients better. (Kats endo Dr Creech says he attended one of her seminars in 1977). Why was my grandma so bent on D education? 2 of her 3 daughters were Type 1's and she was D with Type 1 when she was 41. Essentially, their house was bombed with Type 1 all at once. :confused:

    2) ok, with that history of myself, my mom raised me from the time I could toddle around how to fetch a sugary thing for her when she was in insulin shock. When I was in my tweenie yrs she taught me how to draw up meds in a syringe, what the difference between NPH and R was and how much she took. By the time I was a teen, and an EMT, I already knew all the signs of highs and lows and how to treat them. My mom started to go blind when I was about 9-10.

    3) but here is the most pathetic I think of all. Grandma warned me yrs before I ever even had my first child, that my 4th child would be diabetic. She was a pyschic fortune teller in her youth and I ignored this. :eek: She told me this when I was 10, she died the next yr, and I had Kat 20 yrs later. Yet when I began to see the signs of D in my own child, I tried my best to justify it as "she has a stomache bug, shes reverting to bedwetting because we just moved and her homeschooled siblings are now gone all day in school." Of course it was not until Kats 3rd day in the ped's ward of Huntsville Hospital that I recalled her great-grandma's prediction.
     
  2. hurrayupmom

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    The only thing I knew about Tl was what was said in the "Steel Magnolias" movie:eek: When Tori was dxd, I told them "No, she has strep throat" she did have that, but it was obvisously more. I do triy to help people understand the difference, when they say my grandmother etc, has diabetes.

    So many kid experts out there now---Nick Jonas Fans:eek:
     
  3. vettechmomof2

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    I knew much more than then average I guess.
    Friends of mine since Junior high has type 1 and I was comfortable helping them in school with it.
    I knew about the eating and that it does not need to be sugar free, finger sticking, lifestyle of dealing with it, etc.
    So I guess I was experienced???
    Allene
     
  4. miss_behave

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    Yeah they think they're experts. You should read the comments people leave on gossip blogs and youtube about it. I refuse to read them anymore, they just leave me furious! :mad:
     
  5. momtojess

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    I knew absolutely nothing about it, except I knew my grandmother had it and her leg was amputated when she was in her 60s/70s.

    I dont get offended by people who dont know about D, or even those who think they do.. I get annoyed with those that don't know about it and then want to argue with me about the care I give my kid (like she cant eat that cookie.. I try to explain nicely and they still argue).

    I do find myself more interested when I hear some has xyz disease. I ask about it, even if I think I know about it, so I can be told correctly.
     
  6. Mody_Jess_Pony

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    My dad has had diabetes (type 2) for over 13 years. I'd sit on his lap while he did his insulin. Finger sticks I witnesed daily. Ive watched him take pills as well. As a child I didn't relieze that not everyones daddy did not have D. I have been exposed to it for so long when I got it I did know a bit more than a lot of other people but not much more. I even knew about insulin pumps because my dad had looked at one once upon a time.
    I knew that when daddy ate half a thing of ice cream and didn't take his insulin that it was bad. I knew he could eat anything he wanted as long as he took his insulin :)
    SO I knew a bit.
     
  7. jvoyles

    jvoyles Guest

    I knew nothing about diabetes. I had heard there were 2 types and I thought that one type caused high blood sugars and one type caused low blood sugars.

    It does not irritate me that people do not know about diabetes.

    It irritates me when people THINK they know about Type 1 and make judgements based on their "knowledge" when they really do not know ANYTHING.

    What also irritates me is when medical "professionals" THINK they know about diabetes but do not. This is dangerous and there is truly a need for more accurate professional education for medical personnel.

    It also irritates me when "journalists" write about diabetes and are not accurate. And reporters report incorrectly. Those "professionals" have a great deal of influence and have a responsibility to report accurately but it really is rare that they get it right.

    So I feel the everyday clueless person can go on that way and be happily oblivious. I would love to be one of them again.
     
  8. 4.my.son

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    My great Neice Has D . I knew about it but never had to physically treat it myself. Basically I knew Jack squat.
     
  9. Tigerlilly's mom

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    What did I "know" about diabetes prior to Tylers diagnosis? (basically nothing)

    - You had to have shots
    - Couldn't eat sugar
    - Juevenile diabetes was for kids only (maybe they grew out of it)


    I think that was all I "knew" about diabetes, BUT I never tried to tell anyone anything about the disease since all I knew was from the impressions that I had from tv etc.

    I think that is why people's STUPID comments about diabetes don't bother me.
     
  10. goochgirl

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    Not that much. I was paranoid that I would get it, so every time I was thirsty at night, and when I suddenly lost weight I worried. (just moved, climbed up and down stairs all day, and forgot to eat... wonder why I lost weight?)

    My last job, I was working in an office with two married MD's. Their 8YO daughter had been Dx with D the year before, and they sent one of the nurses from the office to her school every day at lunch to check her BG. I remember getting annoyed and wondering why, at 8YO, the child couldn't check herself. (ok, I still wonder that) Now, I realize that she was probably MDI.
     
  11. zell828

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    I knew about Type 2 since my husband is Type 2. I knew that there were some Diabetics who took insulin, but I had no idea why, how much, or the carb counting method. I didn't know Type 1 affected so many children or it was "juvenile diabetes".

    Basically, it was an eye opening experience for us. I don't fault people who don't know now either. If you don't have to know, you don't usually take the time to learn. The most asked question I get about my SD now is "will she outgrow this?".
     
  12. hold48398

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    A boy on my swim team had T1 D, so I knew a little bit about it as I saw him testing his blood sugars at times and injecting himself. I knew he couldn't eat a whole lot of sugary things and if he ever passed out, we were to shove a hard candy in between his cheeks :eek:. I also recall my Dad saying that we had to watch my sugar for drinking so much water (I was always a thirsty child)... I would have never imagined the intensity of the disease. :rolleyes:
     
  13. TheFormerLantusFiend

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    I had read a bit about diabetes, including the babysitter club stuff, Sugar was my best food, Long Time No See, and the "what is diabetes" parts of the CWD and ADA websites.
    But when I was sick, I still thought that I could rule out diabetes because I was skinny, 17, and had been sick for over a year, and everything I'd read suggested that if you developed type 1, the onset had to be quick- you got a cold, that triggered it, and BOOM you had diabetes. And if you developed t2, you didn't have to be fat, but you had to be fat or have some really rare gene, or be on some medication that caused t2, or else be really old. And I didn't figure I was any of those things, so ta da! I didn't have diabetes:rolleyes:

    I also didn't know I could still have sugar except in the form of honey and lifesavers when hypo, so on the way to the hospital after we got the phone call that went "OMG, I was wrong you don't have t2, you're in DKA" I complained to my father that I was really going to miss chocolate milk.:rolleyes:
     
  14. frizzyrazzy

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    I knew nothing. I knew Mary Tyler Moore represented the people with the "bad" type of diabetes, Juvenile diabetes. And those people did "shots" though I had no clue if it was one shot or twenty shots or one shot a week, I just knew 'shots' and I can't even say for sure if I knew that the shots were insulin. And I knew that older people got type 2 diabetes. In my head I knew that they were not the same disease, so I guess I knew more than some people, just in a very limited scope. And I also had images like Steel Magnolia's in my head. And I had an image of this little boy in grammar school who would often leave the room to eat an orange or drink juice. I figure he must have had type 1 but no one ever talked about it. And I had this image of this little boy who's grandparents lived down the street from us. His mom was always "sick" and many times he had to call 911 for his mom. His mom died when we were kids. His mom of course had diabetes. These were all things that went through my head at dx.

    I remember one of the first things I said to a nurse was "well, Ian doesn't really like candy anyway, so that won't be too hard" and then she told me it was all about the carbs. And I said "but we eat pasta every day!!!!!!!" OMG..I was almost crushed thinking that we were going to never be able to eat pasta again. And at the time Ian was a super picky eater and had a very limited menu of foods that he would eat, so I was almost hysterical.
     
  15. Tigerlilly's mom

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    When I heard about the carbs, I think that my heart stopped for a moment - Tyler doesn't eat pasta - but tons of carbs - chicken nuggets, fries, pizza, sandwiches, waffles, cereal etc etc etc... I was thinking he was never gonna be able to eat again!!!! When the hospital dietician came in with his meal plan without even meeting with me first, I took it from her folded it up and said "Let me tell you what he will eat and you then work out a meal plan for him" - Thankfully she was able to do this - guess she should have spoken with me before spending the time doing the other plan.:rolleyes:
     
  16. frizzyrazzy

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    oh God! I would have fallen over. We had a very nice dietician and she said "list Ian's favorite foods" I listed pb sandwich. Cookies. Grilled Cheese. pasta. Milk. Juice. She said "we can work with that" and we were even doing NPH at the time and she made those foods fit. He never had to change any of his favorite foods. I am so grateful for that. (that's how we came up with pb sandwich with no crusts - 16g, 1 cup milk, 13g, 2 cookies 16 grams = the perfect 45g NPH lunch. LOL.
     
  17. Emma'sDad

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    D knowledge before DX... well, my father is TD1, so I basically saw him go from being stiff from being high to violently drunk from being too low and refusing to drink his juice. So to me, if somebody said that they found out last week that the the doctor said that they had become Diabetic, that they had to deal with what Dad has to deal with. I knew there was T1 and T2, but didn't really know why. My father was always on fixed units in the morning, lunch and supper and had to eat this that and that. Carb counting wasn't heard of growing up.

    When Emma was Dx, I was 260 pounds, and I put it into my mind that OMG, if this can happen to Emma, this can happen to me!!! So I immediately starting to watch what I was eating and started doing exercise and immediately lost 10 to 20 pounds. (the easy weight to lose). Then I started understanding what happened to Emma and that my effort for fighting the same Diabetes that Emma got was useless, but I had lost all that weight and was very proud of myself! So I kept at it and I am proud to say that I am down to 210 with a goal of 200 by years end. So net loss of 50 pounds so far. And if I can get myself to 190, I'll be quite happy.
     
  18. Kaileen

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    I knew a whole heck of a lot about type 2. My grandma and mother were both T2: my mother died in a coma after having her second leg amputated. I knew absolutely nothing about type 1.
     
  19. Caydens_Mommy

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    I can honestly say that I didn't know as much as I thought I did.. DH is Type 1 also, and I realize now that I had no idea what was really going on or how to handle things till DS was dx'd.. I don't so much mind the people who don't know, I mind the people who insist they know everything but really have no clue what they are talking about..
     
  20. MyAngelEmma

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    Not near as much as I thought I did! My only prior experience with diabetes was a great grandmother with Type 2, Gestational Diabetes during my pregnancy with Emma, and a former co-worker with T1 that had terrible control and filled my head with lots of untruths about D.

    When Em was first diagnosed the only think I could think was, “Oh no, she will never be able to have children.” because that is what this co-worker repeatedly told me that her doctor’s advice was to her. I just assumed this was for all women with diabetes but now have come to understand that it is usually the advice given to woman that have really bad control and are not willing to take the steps necessary to improve that before and during pregnancy.

    I also thought that my daughter was doomed to have a life of complications due to diabetes and that is just the way it was because that is how it was for my greatgrandmother. Now I know serious complications can often be prevented if the proper steps are taken to maintain good control and today’s technology makes that so much easier than years ago.

    I never had any idea how much effort it took to keep a child with diabetes in good control. It really is a lot of work. I used to think it was easily managed with a finger prick here and there and a little insulin and cutting out certain things from the diet and that would result in perfect numbers. If only it were that easy…NOW I KNOW!:(

    I do have to say though, even though I thought I knew something about D, I would NEVER have tried to give advice to someone that was actually living with D everyday. I think it is quite arrogant for a person to assume they know more than the person that actually has been diagnosed with it.
     

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