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74 Responses

  1. Cara
    Cara November 28, 2007 at 5:45 am | | Reply

    You know, they seem to forget that children with type 1 do grow up. And the diabetes doesn’t go away. I grew up. I had no one to talk to about diabetes until I found the OC. But I think we do need to work harder at supporting adult type 1 diabetics. It’s almost like we don’t exsist sometimes.

  2. Allison Blass
    Allison Blass November 28, 2007 at 8:02 am | | Reply

    AJ:

    Honestly, yes. For most people, different foods affect blood sugar different no matter how perfect your ratios are. Also, there is sometimes an issue with knowing exactly how much you are eating.

    Also, come back to us in ten, fifteen, twenty years of sticking a needle in your side and tell us how you feel, ok?

  3. Sarah
    Sarah November 28, 2007 at 8:15 am | | Reply

    While I’m with AJ on the carb issue (yes, it’s fine for most to eat treats in moderation, that IS what carb-to-insulin ratios are for), it’s more of the day to day long term isolation that people here are referring to.

    After 23 years with T1, it’s a huge drain no matter WHAT you do or how well you take care of yourself. Trust me. It gets harder to keep myself alive each passing year. And I don’t even have complications. But I now NEED to wear a pump and test 12x day just to not have a seizure. Lows and highs feel the same to me. Sometimes I don’t know I’m low unless I see the number.

    It’s either risk my brain with lows with tight control, or risk my heart, kidneys, nerves, eyesight, and limbs without it, not to mention my poor quality of life from being so brittle and insulin sensitive.

    We as adult T1′s (adult OR Juvenile onset) get frustrated at the fact that all diabetes groups for adults are filled with Type 2 diabetics whining about having to take a pill or test 2x per day or that they can’t gorge on donuts anymore. Well, most of them have had the past 50 years to gorge on donuts diabetes free. The vast majority sit around in their grossly obese bodies, not realizing that I would KILL to be able to have near normal blood sugars by following a healthy diet and exercising (and perhaps a pill or 2).

    Then we have ignorant people always asking us why we have diabetes since we’re “so thin” and young, and why did we let our diabetes “get so bad” that we need insulin, and scold us for not “sticking to our low carb diets instead of turning to shots”.

    Give me a break!

    After a lifetime of T1, and 7 years as an adult T1, sign me up for the damn camp. And I don’t regret my attitude at all. When I was 10, and only 8 years into T1, I also thought “diabetes wasn’t a big deal”. I also thought there was a Santa Claus…

  4. Kelly
    Kelly November 28, 2007 at 9:36 am | | Reply

    Do I feel displaced? Nearly every day. I realize that Type II is the majority of diabetics out there, but it gets tiring to click on a news link regarding diabetes only to discover that it’s regarding Type II and doesn’t remotely pertain to me, etc.

    I do agree that a Type I support group is a lovely idea. Care to start one? I’d sign up.

    (((hugs)))
    Kelly
    Type 1 for 31 years and counting

  5. Terry Keelan
    Terry Keelan November 28, 2007 at 10:47 am | | Reply

    LADA here, diagnosed three years ago at age 48.

    It would be nice to hang out with other Adult Type 1′s. I wonder why we are so easy to find on the Web but so hard to find in the 3D world?

    After getting over the initial surprise, the biggest surprise to me was the way insurers treat us when we appear. It’s as if they string garlic around their necks and make a cross with their fingers to keep us away. I recently spoke to my agent about replacing a term life policy and had to reveal that I’m T1. I got the usual remarks about not being overweight, not being a child, are you sure it’s type 1? yada, yada, yada. Then the bombshell – we’ll see what’s out there, some companies will accept ‘high risks’ like you. Criminy. Don’t even ASK about disability insurance. To have other ears to listen to me when I gripe about insurance would be wonderful.

    Oh, AJ? Carb ratios seem to be a magic bullet for you and maybe they are for others too. But before I had this disease I didn’t even have to THINK about carb ratios or counting carbs or estimating carbs and THEN figure out how much fluid to inject into my belly. Now I have to think about it every time I put a piece of food in my mouth.

    We’ve all learned to deal with it and work it into our lives, but, deny it if you want to, it’s still a royal pain in the ass. I’m also wondering if and how you manage to make your carb ratio calculations work precisely every time all the time. Share that secret with us.

    I will agree that there sometimes appears to be a ‘poor me’ demeanor among us T1′s, but consider this – if we were all perfectly happy with having our conditions and in perfect control we wouldn’t be seeking each other out for support and comfort. We have to put up with something most other people don’t and if we want to bitch a little there’s nothing wrong with that.

    When you find us tugging on people’s sleeves and bitching out loud to non-diabetics on a constant basis about how bad we’ve got it or how misunderstood we are, THEN you can call us cry-babies. Otherwise we’re just our own little club with our own language and concerns. Let us have our whiny fun.

    Terry

  6. Anna from Montreal
    Anna from Montreal November 28, 2007 at 12:00 pm | | Reply

    I have been a Type 1 diabetic for 40 years since age of 7. I just recently started using an insulin pump – not because my diabetes was out of control before with multiple injections, etc. etc. – but because I wanted a change – to see if a pump was all it is supposed to be – as I have friends who have become diabetes later on in life – and they think it’s the cats meow – using the pump. For now – being on the pump I am feeling like a newly diagnosed diabetic – I feel for adults who get Type 1 after having lived life as a nondiabetic. I used to carb count with my multiple injections – but I did it without thinking – and A1C’s were usually in the 7 mmmol (sorry don’t know the American version) – but 7 mmol is good – but for me I wanted to be better – in the 6.5 range. So, this is the reason I am using the insulin pump for a trial period (no big bucks have been paid for it yet – am trying to figure that one out – the pump alone costs $8K CDN – wondering if it’s cheaper to purchase in the US). Basal rates seem to be alright but still require tweaking as I’m running abit high – so at the moment I am having to eat like a saint for a few more weeks – e.g. 3 meals a day – no snacks inbetween (not allowed to do correction boluses). I miss my little snacks during the day and my evening espresso and cookies!!! It’s a small price to pay tho’ for hopefully more freedom with being on the pump I hope. Anyway, if ever there was a conference with Type 1 diabetics – pumpers or not – that would be fantastic!!! We are all our own best doctors IMHO – and the little things that may work for us in dealing with this little glitch in our lives (having a dried up raisin for a pancreas just sucks doesn’t it?) – may also work for others that we talk to or at least give them hope that life can be better.
    So, good luck with the next feast of the season – Christmas. Here’s to having good health and much happiness!!!

  7. Steve
    Steve November 28, 2007 at 3:11 pm | | Reply

    Thanks you for this blog. It is one of my best sources of diabetes information.
    I am essentially a Type 1 since I lost a good part of my pancreas to pancreatitis. I don’t recommend it as a way to become a diabetic. I just have to remind myself that I am lucky to be alive. Another positive is the fact that I now have to very carefully watch what I eat so that my weight is much less than before I got sick. Before I was sick, pizza and pasta were two of the major food groups. I am also very lucky to have good health insurance. I can’t imagine what it would be like to have to deal with this if you were paying for every test strip. My insurance stupidly does not cover seeing a diabetes educator. I pay for this myself because I find her such an excellent source of information. In the crazy way of insurance, I pay her about 3 times what my insurance company pays my diabetes doctor.

  8. Karen
    Karen November 28, 2007 at 5:02 pm | | Reply

    After 23 years with T1, it’s a huge drain no matter WHAT you do or how well you take care of yourself. Trust me. It gets harder to keep myself alive each passing year. And I don’t even have complications. But I now NEED to wear a pump and test 12x day just to not have a seizure. Lows and highs feel the same to me. Sometimes I don’t know I’m low unless I see the number.

    Well said Sarah

  9. amyliag
    amyliag November 28, 2007 at 8:58 pm | | Reply

    Amy,
    This post hits home for me. Though I was diagnosed with type 1 at age 11, I am now a 30 year old woman and it seems like the world forgets that those cute little kids with type 1 diabetes grow up to be adults, and that we are still around–with limbs, with lives, with concerns and needs. Grrr…

    No one in my family ever asks about my needs as a diabetic around the holidays. My grandma just says “No pie for you–take the strawberries,” and will carb-load me to the high heavens with rolls and beans and stuffing and potatoes and all the rest. Even my own parents seem to forget. It’s infuriating sometimes, but I digress…

    I really love the idea of a conference or a camp. I hope that these things happen and I’d volunteer my time to help, as needed.

  10. Meg
    Meg November 29, 2007 at 8:37 am | | Reply

    About diabetes not being mentioned during the holidays, I’ll take a holiday meal without it being mentioned a hundred times over before I want to listen to comments like “should you being eating that?” from some overweight relative. I always have to bite my tongue not to reply “should YOU being eating that?”

  11. Dara Sundberg
    Dara Sundberg November 29, 2007 at 1:48 pm | | Reply

    You guys are amazing to read. I came over here from Lemonade Life and agree 100%. I’ve had T1 for over 10 years now, was diagnosed at age 16. Now as an adult I feel like there’s nobody to talk to about my diabetes who will understand how I feel. I finally went on the pump this year and got my a1c to 6.6 (woo!) and my husband and I are planning a family. While I do feel quite fortunate that my team at the Saint Mary’s Center for Diabetes and Endocrinology here in Grand Rapids, MI are forward thinking when it comes to diabetes, I need someone more than them to talk to.
    On that note, I can’t ever stress enough how important it is to have a health care team that works with you for your best interests. My doctor recognizes me even when I’m not in to see him specifically. They have never told me I can’t do something. “Want a baby? Sure! Here’s what you need to do…”. They work for you, get everything you need from them and if they don’t work for you, fire them and find someone else!
    I’d go to an Adult T1 camp or conference in a heartbeat, name the time and place! And thanks to all of you, I’m so glad I found you. -Dara

  12. Albert
    Albert November 30, 2007 at 7:38 am | | Reply

    I posted a response to this on my own blog. But here’s most of it anyways:

    Terry makes an interesting point.

    As a non-diabetic, I never ever cared to know what diabetes even was. But stumbling upon Diabetes Mine and countless others has opened my eyes to something that’s actually a BIG deal. Do you think people would care about the AIDs epidemic if they didn’t talk about it all the time in the school system? Do you think that finding out someone had Cancer would have the same shock if it wasn’t always perceived as so “deadly”.

    There’s a problem with diabetes awareness because it is both an epidemic and a very deadly disease yet it hardly gets the attention something that is either.

    All it took was 1 guy traveling the world with a drug-resistant strain of Tuberculosis to grasp the nations attention in fear. Yet something like diabetes doesn’t even need to be spread, it doesn’t discriminate, and can affect vitually anyone.

    People just don’t seem to care if they don’t think it ever affects them… and that’s a deadly misconception about diabetes. I’m always grateful to have found the online diabetes community and everyone’s contribution in helping me learn more. Your every day stories are reality. That’s a reality that helps remove the ignorance that keeps the rest of us oblivious (until it’s too late).

    So until a real cure comes around… keep sharing, crying, laughing and whining to your heart’s content.

  13. "honey sweet"
    "honey sweet" November 30, 2007 at 11:00 am | | Reply

    Amy Tenderich ask What about isLADAs?

    Amy,
    This thought has also been bouncing around me skull.
    Since I was diagnosed at the ripe old age of 37, I hanker for an organization that focuses on adults with Type 1. Where is the place for us? Other than here on the Internet, of course? There …

  14. "honey sweet"
    "honey sweet" November 30, 2007 at 11:00 am | | Reply

    Amy Tenderich ask What about isLADAs?

    Amy,
    This thought has also been bouncing around me skull.
    Since I was diagnosed at the ripe old age of 37, I hanker for an organization that focuses on adults with Type 1. Where is the place for us? Other than here on the Internet, of course? There …

  15. "honey sweet"
    "honey sweet" November 30, 2007 at 11:00 am | | Reply

    Amy Tenderich ask What about isLADAs?

    Amy,
    This thought has also been bouncing around me skull.
    Since I was diagnosed at the ripe old age of 37, I hanker for an organization that focuses on adults with Type 1. Where is the place for us? Other than here on the Internet, of course? There …

  16. Jan
    Jan December 1, 2007 at 12:48 pm | | Reply

    Amy, you have a very good point. I am not an adult T1, nor do I have T1. But I spend most of my time caring for my niece who was dx’d with Juvenile Diabetes at the age of 8. To call dealing with this disease on a day-to-day, night-to-night basis “challenging” is an understatement. I would like to see the support and good medical care she receives from Pediatric Endo teams (with CDE, nutritionist, endo, eyedoctor) on board continue after she turns 18! I would like her to have support groups she can turn to as an adult. As far as adult diabetics having it easier than children, as per one of your poster’s comments. Diabetes is progressive. The longer you have it, the more your chance of complications, even with good control. Hypoglycemic unawareness is also a big issue. It is vital for her health in the future to have these kinds of supports in place for when she becomes an adult. Thank you for starting the ball rolling.

  17. kb
    kb December 5, 2007 at 9:02 am | | Reply

    Diagnosed at age 34, all the classic symptoms, a1c was 11.2. I had no idea what I would face. Endo was 3 months out and I was a mess. I was alone. Family doctor told me I was type2 and gave me pills. (M_tf_rm_n made my eyes blurry.)

    Now 38, confident, eat well, exercise regularly. Last 3 a1c was 6.0, 6.4 and 5.6. The endo calls me poster boy!

    I feel great, but I’m still alone. I’ve never met a type 1, but I bet we have a lot in common.

    Thanks for the web site, and the ability to meet people in writing! I would love to take part in an event and share with others.

    (Oh yeah – skipped Thanksgiving and went camping. It was great! Just my beautiful wife and two wonderful kids. And no one was pushing desserts my way!)KB

  18. Cesar
    Cesar December 5, 2007 at 11:31 am | | Reply

    Even thou I am a kid with type 1 dia, I feel that they should make it more fair for the adults, the adults like you Amy and everybody else, have been with diabetes for a much longer time and need encouragement.
    Let us know if you guys get anything worked out. :) Cesar

  19. Katie Lynch
    Katie Lynch January 12, 2008 at 7:32 am | | Reply

    The Diabetes Society on Lincoln Ave, at the “Old Garden Theater”, has a great TypeI Pumper’s meeting! Its the third Tues of the month, 7pm. Lots of info for Type I’s. Please join us!
    And the DS IS a great resource for TypeI info, (NOTHING like the ADA). I’m a 5yr pumper, diagnosed at 29, 29yrs ago! Katie Lynch

  20. Katie Lynch
    Katie Lynch January 12, 2008 at 8:09 am | | Reply

    I’m a 5yr pumper; diagnosed at 29.
    Lots of support in San Jose at the Diabetes Society on Lincoln Ave, in the new “Garden Theater”.
    The pumpers group meets the 3rd Tues of the month at 7pm. All ages 13-80′s, usually 20-30 people at a meeting. Next meeting is Jan 15 2008. see you there!

  21. Catherine
    Catherine January 13, 2008 at 6:46 am | | Reply

    I was diagnosed as a Type 1 at the age of 26. There was lots of information aimed at children and teenagers but not for adults. My then (now ex) husband was totally unsupportive and treated me like a Leper. Remember feeling very isolated. Even now, almost 16 years later the only other type 1′s I know are from online communities.

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