Comments

1. Yep. It’s easy to feel displaced as a Type 1 adult. I was also diagnosed with Type 1 at 37. Mother of two kids, and a full-time job, its been a challenge. Once a doctor told me that because I was skinny, I did not need to worry about complications. What was he smoking?

   When everyone was eating pumpkin pie this past Thanksgiving, my own mother offered me a slice with whipped cream, “Just this once”, she said. Well intentioned but misguided, its this kind of temptation that gets me into trouble!

   Posted by: Jodi Makovsky | November 26th, 2007 at 7:17 am

2. I haven’t given up hope on the conference yet! I just sent an email to TCOYD and hopefully I will hear back from them soon.

   Posted by: Allison Blass | November 26th, 2007 at 7:41 am

3. I hope that the right person finds their way to this post and gets the inspiration to start something.

   I’m certain there will be plenty of support behind it.

   Posted by: Albert | November 26th, 2007 at 7:57 am

4. I know what you mean, Amy. With the online community, I don’t feel quite as alone, but for the first few years after diagnosis I felt like some kind of oddball. Didn’t help that my doctor told me he had never seen a case like mine (onset at age 27, normal weight, active, etc.). My family tries to help and is supportive, but they get confused sometimes about what I need (insulin or carbs), and don’t truly understand what a guessing game a day like Thanksgiving can be. My mom kindly made a chocolate pie out of sugar free pudding and other assorted ingredients, but I had to ask her what all was in it and try to do the mental math and guesstimate a bolus. And then there was the dressing, which she “makes a little different” each year. Maybe this conference or camp should be held on Thanksgiving!

   Posted by: carol | November 26th, 2007 at 8:10 am

5. I 32 when I got diagnosed with type 1 diabetes. An easy to read 250 page book for what to expect and what info I need to know would have been nice. Now I am well versed but I have to thank you, my great endo, and the rest of the internet for my knowledge.

   Dave

   Posted by: Dave | November 26th, 2007 at 8:19 am

6. Thanks again, Amy! I know how you feel. Thanksgiving was a disaster for me, glucose wise. I really did limit myself too, and tested every hour or so too. Being recently married, we had to do two Thanksgiving dinners. I really did limit myself: one small serving of potatos, one roll, one serving of stuffing, and one piece of pie. I thought I shot correctly for it. Nevertheless, 300’s ruled the day. And it seems it takes an enormous amount of insulin to finally come back down, leaving me feeling drained and cranky. My dear wife worries about me, and asks me frequently what my numbers are, because she likes to know how I am. I really do try hard to keep on top, and no matter how diligent I am with shots, diet, and testing, sometimes things just get out of whack, and I have what seems to be a week long high of 200-300’s. She’ll ask why I am high, and I have no answer many times, because I thought I did everything right. It is so frustrating and draining some times. My last A1C was just above 7%, which is higher than last time, but not too bad.

   It has been a year now since my Type 1 diagnosis, I’m now 28 years old. I feel like you that there is no advocate for Adults with Type 1. There seems to be no one who will speak for us.

   I must say, I learn more from this blog and others (Kerrie’s SixUntilMe, Scott’s blog, etc.) than any doctor, magazine, or book.

   Thank you Amy, and all the other bloggers! You are a lifeline for us PWD’s!

   Posted by: Clinton Cooper | November 26th, 2007 at 8:21 am

7. Dear Amy,

   You had a good youth.
   Your diabetes came at an age when you are able to manage it yourself.

   It came at a time new techniques make it so much more easy.

   You can work, play, eat, love as much as you like.

   If nobody asks about your diabetes, it is because nobody needs to. That’s good news, not bad.

   I was diagnosed at the age of 45.
   I have the same luck as you.
   I’m so happy I didn’t get it earlier, as a child or as a teenager like most type 1’s.

   I wish you the same.

   Posted by: paul from France | November 26th, 2007 at 8:21 am

8. I could not agree with you more. Not a single person at my Thanksgiving dinner bothered to ask about my diabetes as they all devoured the double chocolate cake and pumpkin spice pie, and apple pie, while I ate the fruit salad.

   I think the idea of a Type 1 camp would be great. Tell me where to sign when you find one.

   Posted by: Chris | November 26th, 2007 at 8:42 am

9. Count me in on whatever we can get arranged!

   Posted by: Scott K. Johnson | November 26th, 2007 at 8:43 am

10. I hid out at the Salvation Army as a volunteer this Thanksgiving. I made a brief appearance at the meal at home and before anyone could offer me leftovers I left to go ice skating. It was a lonely day but the only way I have found to stay in control – stay active. I was diagnosed at 27 and am now 32. I still don’t have one friend here in town who is also diabetic. It’s a lot of lonely guesswork.

    Posted by: Grace | November 26th, 2007 at 8:44 am

11. Dear Amy,

    I’m giving BIG thanks these days to wonderful people like you who are blogging about dealing with T1 as an adult. The frustrations and tribulations are somehow easier to take when I know I’m not alone. As I’ve shared with you before, and even though I financially supported your bike ride, I do not believe the ADA looks our for our concerns at all and I will not give money to them again. For such a long time I thought I was overreacting to doctors, family & friends who just didn’t seem to get it, but reading about other’s experiences, thoughts and suggestions I don’t feel so adrift. We can seem so normal and look so healthy that our closest people think their whipped creme offer is a kindness, leaving one to feel even more alone, because it’s just another little double-edged torture. Do you let it slide or try to educate? A fine line. What’s the best way to deal with a sadistic doctor who treats you like a random number without looking at you as an individual human? These are issues for us adults. It is so great when someone we know communicates their understanding of what a constant struggle we can face but it really seems the only people who understand TI are those who live it. Ater 43 years of experiencing being both a child & adult with T1, I understand fully that we alone are responsible in the day to day control of this challenge, but the generosity of bloggers such as yourself, and the community the internet offers is as life changing and reaffirming to me as the first blood testing kit I got over 20-plus years ago. THANK YOU for being a leader in the revolution of talking about and dealing honestly with this disease! We (I) hear you! Sara

    Posted by: sara myers | November 26th, 2007 at 8:45 am

12. I am also very frustrated with being a T1. I was diagnosed in 1970 at the age of 7. While there have been incredible changes in the treatments, they still remain treatments. And there have been no major changes in treatments for quite a while.

    You always seem to hear announcements about this “potential” treatment or that one, but then nothing ever seems to come of them.

    The ADA has become more of a political group, IMO, than an advocacy one. With that many T2’s in the country, it is no wonder that their focus has been on that type.

    I am feeling very cynical today, so in my humble, yet ever so correct opinion, we Type 1’s are just not a big enough market to really garner the attention we need for advancements. And, what will a cure do? It will remove sales of a lifetime of treatments from pharma companies.

    You can see that with the reaction to adding c-peptides to insulin.

    As with anything, when it doesn’t look right, follow the money.

    Posted by: Scott | November 26th, 2007 at 8:49 am

13. Not having any support as a type 1 adult is one of my biggest frustrations. If there were an organization or conference or book for us, I would sign up for it in a minute.

    Posted by: Erin | November 26th, 2007 at 8:54 am

14. Amy, today you really hit home! When I was diagnosed as a Type 1 in 1981 at the age of 31, I thought I was a freak. As time went on I discovered there were more and more people in my situation, and today with the internet, we are everywhere. Keep up the good work.

    Posted by: Mark Reitkopp | November 26th, 2007 at 8:58 am

15. Doing the JDRF Ride to Cure Diabetes this past September was amazing. Almost all of the people riding either had type 1 or were riding for someone with type 1. The community was amazing and for a few days, the mental burden of diabetes was lifted. To me at that event, I never got the feeling that this was just an organization just to support kids, even though it was originally started by mom’s of kids with type 1. I would highly recommend that anyone looking for support to participate in one of the JDRF rides.

    Posted by: Anne | November 26th, 2007 at 9:03 am

16. i was diagnosed Type 1 at the age of 44 on July 11, 2007. until i found the D-OC i was lost. books about Type 1 were about children. i’m almost at menopause!

    thank you for the heads up on the book.

    it is people like you, that is making this so much easier for people like me!

    Posted by: landileigh | November 26th, 2007 at 9:31 am

17. one more comment… Although I am more interested in supporting the JDRF these days, I have to give the ADA credit for getting me started on my diabetes control back when I was diagnosed in the late 80’s. I used the food exchange notebook for years and it helped me to have excellent control as a teenager. I also think their advocacy has helped to make more low-sugar foods available. (Of course they have done many other positive things for diabetics.) I imagine there are many people (if not most) who work for the ADA who have a sincere desire to help people with diabetes. These days, those are mostly type 2, which is why I don’t identify as much with the ADA.

    Still, Amy, I understand how you might feel, not having had diabetes since your childhood/teenage years and not feeling really connected to these groups. I didn’t really do anything with the JDRF until the past couple of years, though. It is a fabulous community.

    Posted by: Anne | November 26th, 2007 at 9:35 am

18. I was dx’d LADA at age 55… Thanks to the WSJ I found you and your blog fairly quickly – and so, haven’t felt quite so alone.

    Posted by: Colleen | November 26th, 2007 at 9:57 am

19. Amy: This post has produced a great idea — a T1 camp or conference. It is desperately needed. I was diagnosed T1 when I was 19 — 25 years ago. Since then, I have met two other T1s, both of whom were only peripherally in my life. Whenever I talk about being diabetic, the first reaction is “But you aren’t fat, can’t that be cured now?” ADA and JDRF are not really patient-oriented anymore. Adult T1s need an outlet, a way to raise awareness of living a long time with T1, regardless of when we were diagnosed. Thank you for being one of those outlets.

    Posted by: Jonathan | November 26th, 2007 at 10:09 am

20. I SO understand where you are coming from! I was dx’d on July 7th of this year at age 29, and I’m still in shock.

    My first holiday party was a disaster. If it wasn’t for all the wonderful people in the DOC, I don’t think Thanksgiving would have been much better. It’s hard when you have nobody who understands, or even wants to for that matter. Where do you learn from? The 15 minutes the doc gives you at appointments? HARDLY.

    If there is ever a conference or retreat, I’m in.

    Posted by: Mandy | November 26th, 2007 at 10:38 am

21. Displaced is unfortunately a very good word to describe living with Type 1 as an adult. I have been begging, pleading, asking, advocating for Type 1 Support Groups for Adults where I live. They are simply nonexistent.
    There is a HUGE gap between 18 and 50 let’s say….
    Seems around 50 or so it is about Type 2 of which there are many support groups.
    So this displacement gap…. on my agenda…. my dream…. my goal… to last my lifetime.
    I hope to create something, no details yet, I am a long way off, where Type 1 Adults can get together and simply…. be.

    Posted by: CALpumper | November 26th, 2007 at 11:11 am

22. Hi Amy,

    I hope you had relatively stress-fee Thanksgiving. This post was very interesting and I have had similar thoughts about the same subject for years. The only thing I have ever come close to in terms of having a sense of belonging and an intimate understanding of others and they of me has been at the Joslin Clinic in Boston. I have attended their “Do-It” program a couple of times and, although I learned a good deal, it was more exciting to be with a group of other type 1s for a few days.

    I would like to attend the AADE annual conference, but not being a certified Diabetic Educator, I cannot attend. For 2008 it’s in the first week of August in DC. There are more than 350 exhibitors, classes, seminars, etc. The downside is it focuses on the clinical aspect of diabetes. It chaps my ass when clinicians (especially those who do not have diabetes) tell me what I should be doing, based on formulas, ratios, math, etc. We do not live in a vacuum. We have varied schedules, families, emotional highs and lows, travel issues, etc. My diabetes is a full-time gig, where I don’t earn vacation days. Then I have another full-time job that pays my mortgage and my bills.

    Indeed, it would be nice to have a social support network……just like AA does for folks in recovery. They meet and discuss life issues and how to cope on a daily basis with a disease they will never be cured of. Same as diabetes.

    - Stu Davidson

    Posted by: Stu Davidson | November 26th, 2007 at 11:25 am

23. Too true, Amy. I tried to join some Type 1 groups online, but we couldn’t really relate to each other because they’d had diabetes for 20 or 30 years and weren’t that interested in what I was going through. I felt like an interloper. The only support groups around here I could find are for Type 2s. Before I discovered the OC and the forums, I felt like I was alone. I would love a conference. As far as camping goes, have you looked at Wilderness Inquiry? A group like that might be willing to help with a camping trip for diabetics. (I guess I’m not allowed to post links.)

    Posted by: Lili | November 26th, 2007 at 11:50 am

24. After having T1 for 32 years and not knowing another T1 in all that time, I met my first fellow T1 in a local support group after making the effort to find a support group. You’d be amazed how they’re practically non-existent in NYC after funding was pulled in the ’90’s. Should let people know in this area though, Gerald Friedman Institute just opened, a diabetes facility in Manhattan.

    If you can find a support group with some T1s it makes a difference. Changing my career to diabetes writer and lecturer, I’ve interviewed over 100 people w/diabetes. That’s been another source of bonding. While I don’t expect you guys to go out and do that, you may find my blog of interest, http://www.diabetesstories.com/stories_blog/. I’m interested in how we live with diabetes more than the medical treatment.

    I was at the Children with Diabetes conference this past summer and while it is for kids, being diagnosed at 18, I felt some kinship – most actually with the speakers. I actually think you don’t have to be a CDE to go to AADE’s conference. JDRF and ADA don’t cut it for T1 social support.

    I’m ready to sign up for the T1 camp, and I’ll know when and where it is following your blog, Amy, which is the other nutrient for my T1 heart.

    Posted by: riva | November 26th, 2007 at 11:55 am

25. Hello everyone,
    One of the main reasons I started TCOYD is that I had the same emotions and issues as many of you out there living with type 1. There is a paucity of accurate and up to date information out in the world for all of us living with type 1 on a minute to minute, day to day, year to year and decade to decade basis. TCOYD is dedicated to making people with diabetes feel informed, motivated and most importantly normal both physically and mentally. At many of our conferences we have type 1 tracks but will work harder to address the concerns of people with type 1..hang in there..Steve Edelman

    Posted by: Steven Edelman | November 26th, 2007 at 12:22 pm

26. I was diagnosed with Type 1 diabetes at the age of 35. Because there was nothing available for adults with T1, I was sent to classes for Type 2 diabetes, a completely different disease that I don’t have. Those classes were useless. In fact, the majority of new-onset cases of Type 1 are seen in adults, and this is not new. I have a book published in the 1950s that discusses the prevalence of T1 in adults as being FAR more common than in children (of course they didn’t use the term T1, but described insulin requiring thin adults that didn’t respond to pills).

    So much information about T1 diabetes needs to be updated. The percentage of T1s is much higher than the oft-quoted 5 to 10% (it’s more like 20 to 25%) if you include all the adult T1s and LADAs (which is slow-onset autoimmune T1). Sadly, adults over 35 (or 45 in some cases) are excluded from most of the T1 clinical trials, another practice that needs to change.

    I’d love a camp or group for T1 adults. Regarding the pies, I baked them all this year and just didn’t tell people I used Splenda. Nummy! Thanks, Amy, for all you do.

    Posted by: Melitta | November 26th, 2007 at 12:47 pm

27. I agree with the comments above, and want to add that if you think it is hard to find support as a T1, try finding information/support/advice about being pregnant and diabetic. Everything is directed at gestational diab. If I had not found the web community I would not have found pump therapy and may never have conceived and delivered a healthy baby.

    Posted by: Chris | November 26th, 2007 at 12:50 pm

28. Good Morning Amy,

    I read your blog this morning, and it hit a spot. While I wasn’t diagnosed at such a mature age in my life, I have grown into diabetes and am feeling the pain of there not being enough around for the adult diabetics (and somehow I missed there being anything for me as a child). I can say I understand, perhaps? (I know how we all feel about people saying they understand.)

    So, here we go, what I was thinking. You know I ride in various tour de cures, or at least you know of it, I didn’t really ever tell you exactly what it is I’m up to. But after your bit of writing, I’m inspired. So, about me and the tour de cure: It started back in march after a war with my diabetes and me not being able to participate in sports for the last 15 years. My heart was broken because I wanted to be athletic. I had always liked biking and when I was told about the TdC I was all for it. I started riding so that I could go to Long Beach CA after graduation and do something for myself and my diabetes. CA is a long way from home for me to be riding but I couldn’t ride in the NM ride because it was the same day as my college graduation and I was going to CA on vacation, so I killed 2 birds with one stone as they say. After my CA ride I was so excited to have done it that I decided I was going to do a ride in every state. I thought it would be cool. It was really cool to ride in CO because the diabetics were highlighted, we were all wearing special jerseys, we had something in common, I was far from displaced. TX sucked because I didn’t know anybody, I couldn’t point out the diabetics to save my life. So here I am, a cyclist (a novice if you will) riding in an attempt to do something for this G-D disease feeling displaced among other people riding for the same reason. It sucked.

    Enter your post this morning. Beyond the general displacement that you were feeling on turkey day it goes beyond that often times (as you well know I’m sure). Then some great writer comes along and writes about it and I get an inspiration. I want to feel not so displaced as a diabetic. I’d like to meet the people whose blogs I read. You being one of them. I want to expand my personal group of diabetics that I know. If it’s possible, I’d like to meet you in May, there’s a ride in Napa Valley. I know it’s 6 months out from now, but the ride is May 4th, a Sunday. Would it be possible for us to get together?

    Courtney
    ridetoremedy.com

    Posted by: Courtney B | November 26th, 2007 at 1:06 pm

29. I agree also. Being dx at just shy of 36 years old, it hit me like a ton of bricks. Just living my life and all the sudden, wham!! The only other person I knew with D was Susan back in grade school 25 years ago!I did meet an educator that also was a T1D dx as an adult, but she did not take me under her wing as I hoped.
    To make matters worse I wanna have a baby. Talk about NO information.
    I have also volunteered at the local JDRF and it’s always me and all the families with children w/ D. The Outreach Coordinator at the local JDRF and I have talked about getting something together for adults, but we’ll see if it comes to be.
    I also joined a pump group which I was thrilled about at first but now not so much. I was called a newbie and my opinion was discounted by many of the long time diabetics.
    By the way, there is a camp for adult Type 1s, though it’s geared toward the athelete. It’s called Stroke, Spin, Stride. It looks really cool.

    anyway, keep the faith everyone. Amy you are awesome.

    Posted by: ljckidsrn | November 26th, 2007 at 2:13 pm

30. Like some of the other commenters, I wasn’t diagnosed with type 1 when I was older, but I did grow up with the disease and now that I’m an adult with type 1, I’m thrust into that demographic that is often overlooked. This post struck a chord with me as well.

    I do feel that online communities, like TuDiabetes and dLife, offer up that support for me, though. I’ve learned about so many other adults with type 1 that I don’t feel so isolated.

    Hang in there, Amy. I know how you feel.

    Posted by: Kerri. | November 26th, 2007 at 4:05 pm

31. Your blog was the first one I read after my dx on August 6 07.I’m 57 and this was quite the shock…
    I’m a faithfull reader of yours but there is so little out there for me that It really does feel lonely.
    I don’t know anyone with type1 and living in a small town it is unlikely I’ll meet one.
    I try to remain postive and I do what is needed of me for great control.
    Sure would be nice to have a camp or the like…
    I will be onboard for something like that.
    I hope you keep up your work on this site,and I too hope to do the omni pod real soon.
    Thanks for being there.
    And just as an FYI…
    I don’t even think of a cure…there is way too much money in keeping us just on life support. IMHO

    Posted by: Debbie | November 26th, 2007 at 7:12 pm

32. I have been type 1 for 41 years and have been alone with it for most of that time until I talked to people on line and have even met up with them in Chicago and FL. I have one pumper friend in OH who I met and he meets yearly with other diabetic adults where they do their own diabetic camp for a week.

    I understand how you feel about not having others to converse with. At my last endo appointment I was told that my endo was only going to see pediatric patients with a waiting room full of ped patients and their parents listening on while I pitched a fit to the receptionist that no one informed me of this and I was not going to again see this foreign endo that was clueless. She said you are going to deny peds patients of seeing “Dr. Black”, omg how she made me feel like $#i+, I was once a peds patient. I am a Juvenile Type 1, who now was 49. Well bottom line and her caving in and giving me the MD I wanted to see, I so understand how alone we are being an Adult Type 1.

    Oooo at Thanksgiving no one asked how I was doing, and I really don’t want them to, because they don’t understand anyway and one guest saw me testing my bgs and said how awful, and I said yes it is and then she stated well you are probably use to it and I told her you never get use to it, ahhh!!!!

    Oooo by the way, so far there are five of us meeting up in April for the Chicago Diabetic Expo, 2 from CA, 1 from RI, and another from OH, if any of you want to join. May even skip the expo.

    Posted by: Karen | November 26th, 2007 at 7:35 pm

33. A Health 2.0 Overview, Through the Eyes of a New Diabetic

    Last Monday I found out from my doctor that I have Diabetes (probably Type 1), which basically means high blood sugar. It was quite a surprise, as I have no family history of diabetes and it is relatively uncommon to…

    Posted by: Read/WriteWeb | November 26th, 2007 at 7:39 pm

34. Your points resonate with me. I was diagnosed as T1 at the age of 38. The strange thing is that I do not have LADA — no antibodies found. I may fall into that odd category of ideopathic diabetes.

    There are so few resources targeted toward T1s, let alone adult with T1. It is a challenging and lonely haul.

    Your blog is great. Keep on going with it.

    Posted by: Doogie | November 26th, 2007 at 7:51 pm

35. Well, I’d certainly support a book, a gathering, a camp, ANYTHING — aimed at LADAs like me. I was diagnosed 10 years ago at age 60. This came out of left field, totally. BIG SHOCK! After I went online and learned about the GAD antibody test and suggested my doctor order it for me, I had to really lean on him to do it. But the results were definitive and I started on insulin immediately after that.
    So it’s 10 years with insulin and doing just fine, no complications in sight. And I’m trying VERY HARD to keep it that way.
    I hope he learned something

    Posted by: whimsy2 | November 26th, 2007 at 8:12 pm

36. Amy, I know what you mean about Thanksgiving. Big meals with family you don’t see often are hard. On the one hand, you don’t want them to see you as sick. On the other hand, you really do need their support.

    Posted by: mollyjade | November 26th, 2007 at 9:29 pm

37. Displaced is right. What about us folks who live in rual areas ? The only other T1’s that I know are on the internet. Yes my local hospital has diabetes education meetings but there is no way that I can attend because of my work schedule. Having T1 for 31 yrs its been so long that I have felt “abandoned” or just out there floating around that I cant remember how long its been. How sad.

    Posted by: Joanna | November 27th, 2007 at 5:34 am

38. Amy

    I’d like to help in this project if I can. I have a younger sibling who was diagnosed in his late 20s. He and I are the only two Type 1-ers in our entire family.

    Posted by: Bernard Farrell | November 27th, 2007 at 6:35 am

39. I too was misdiagnosed as a type 2 when I was 25, and then was on insulin within just a few months. You wouldn’t believe…well, maybe you would believe, how many people think I am “making it up.” A guy that’s a friend of a friend was just diagnosed type 2. He’s 25 years old, great physical condition, no history of type 2 in the family, etc. I just faxed him your link to LADA. I hope it convinces him that the metformin is doing more harm than good.

    Posted by: Nick | November 27th, 2007 at 7:14 am

40. One thing that gets to me about being an adult with type 1 diabetes is the statements people make when they find out I have diabetes. Often it is “you’re not fat” and “you’re young and healthy”.

    Posted by: Erin | November 27th, 2007 at 11:14 am

41. Regarding the issue of people around you not understanding diabetes, I suggest you make it your assignment to gradually educate your friends so they WILL know about it.
    My experience is my friends ARE interested in being educated, BUT you need to be able to make it interesting for them, and don’t overload them with too much at once.
    One thing I do is to “wear my diabetes on my sleeve” in that I openly test myself wherever I am, and take my insulin in the open as well. This creates natural opportunities for a dialogue.

    Posted by: Dan Fahey | November 27th, 2007 at 11:29 am

42. Hey! What about a camp or a community for an adult with “autoimmune disease chronic illness”? I know that it’s great to find kindred spirits but there’s a lot more commonality out there among anyone with an AD than you might think. The diabetes world has a lot more bloggers than any other disease — but why limit this? I’d love to see a community around being in the “Working world” living with auto immune disease….I might just create it. Would diabetes folks come?

    Posted by: Rosalind | November 27th, 2007 at 11:50 am

43. I’m 26 and have only had type 1 for a little over a year, but I seem to have a very different attitude about it than you Amy.

    Correct me if I’m wrong, but we have carb-to-insulin ratios for a reason. If you want to eat 200g of mashed potatoes and pumpkin pie, then ratio accordingly and dose the proper amount. Check an hour or 2 later to be sure and re-dose. Problem solved. Quit whining.

    Diabetes to me is a chore. Some people brush their teeth after they eat, I stick a needle in my side. It’s not some huge life altering condition (yet).

    What exactly is the problem with 1 slice of pie, if you have the freedom to give yourself the proper amount of insulin.

    What happened to that fancy wireless pod pump you wear? Isn’t that what it’s FOR?

    Posted by: AJ | November 27th, 2007 at 2:13 pm

44. I’m glad it’s all so easy for you, AJ. But if it is, I wonder why you sound so angry?

    Posted by: AmyT | November 27th, 2007 at 5:16 pm

45. Diabetes Camp for grown-ups (even as a weekend retreat) is a great idea, and probably money making idea for somebody so inclined.

    And AJ, please take a deep breath and count to 10 before you write another rant like you did above. It was really uncalled for.

    Posted by: Steve RRR | November 27th, 2007 at 6:14 pm

46. AJ,

    You are clueless.

    Posted by: Karen | November 27th, 2007 at 8:20 pm

47. Amy,
    First, my son is T1 (10 years now – he is 14) and has spend a week every August at Camp NeedlePoint @ Camp St. Croix in Hudson, WI. It would seem reasonable based on your blog that they could host a week there for Adult T1, just like they do for the kids. Like other camps, everyone there – staff, etc. has T1 along with 2 who do not. And for that week, each kid lives in that world where everyone is the same. My son counts on this as part of his health plan. I would think that it’s a no-brainer to do this for adults.

    B/c he was only 4 when diagnosed, we (his family) are an integral part of his care routine and we all benefit as a result. We don’t restrict what he eats, we balance the food with the dose ratios – yes, its a constant juggling of activity, testing and insulin but it only takes a few minutes and eliminates any deprivation. I can’t imagine him not living here with us – his physician team tells us to do as much as we can for him, 5-minute daily meetings, so he doesn’t feel the burden of self-care at his age. At some point he will and he knows this. And never once, has he ever said “why me” or felt sorry for himself. Why would he? This doesn’t mean he loves having diabetes – he doesn’t. But it is what it is.

    I also live with my own un-curable, chronic disease of addiction. For 28 years, only one day at a time. Maybe this was a gift as it made caring for my son easier to grasp – the concept of living with a disease which you can’t touch, feel or cure. And the management is physical, emotional, mental and spiritual. The two are often paired as being “most similar”, that require proper care and maintenance – no vacations. No breaks.

    But I would trade with my son in a heartbeat if I could. I have 12 steps and tools to manage that don’t require quarterly clinic appt’s, finger pokes and insulin to live. But what I want my son to see are the possibilities. There are possibilities for his future, to create his dream life.

    I showed him the “charmr” video and watched him light up – he wants to know where he can sign-up. You’ve given him a tremendous gift Amy. One of possibilities.

    Thank you.

    Kelley Loughrey (Alex’s mom)

    Posted by: Kelley Loughrey | November 27th, 2007 at 9:16 pm

48. I’m not really angry, I’m just kind of tired of the “poor me” attitude that seems to float around the diabetes “community”. Life is what you make of it. I have chosen to minimalize diabetes’ effect in my life by shaping my perception of it.

    I’m sorry if it came off as harsh, but I thought a little slap in the face might make some people realize that your attitude shapes things more than you think, and focusing on how hard it is rarely helps.

    Posted by: AJ | November 27th, 2007 at 10:32 pm

49. And by the way, no one countered my point that you’re dosing insulin anyway, and we have ratios for a reason. I mean, if I’m wrong… correct me, but in my experience so far it doesn’t matter how many carbs I eat, so long as I dose properly.

    Is there honestly a huge issue with carb-heavy foods?

    Posted by: AJ | November 27th, 2007 at 10:44 pm

50. Hi. I guess if you put it that way. It’s natural anyone would want to be in a place there are most understood, I know I am. That would be nice to have. Why don’t you organize an organization and pool members ideas on how to do the camp. Im sure if you put enough effort into it, it will materialize. Good luck.

    Posted by: Ben | November 27th, 2007 at 10:47 pm

51. 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.

    Posted by: Cara | November 28th, 2007 at 5:45 am

52. 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?

    Posted by: Allison Blass | November 28th, 2007 at 8:02 am

53. 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…

    Posted by: Sarah | November 28th, 2007 at 8:15 am

54. 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

    Posted by: Kelly | November 28th, 2007 at 9:36 am

55. 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

    Posted by: Terry Keelan | November 28th, 2007 at 10:47 am

56. 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!!!

    Posted by: Anna from Montreal | November 28th, 2007 at 12:00 pm

57. 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.

    Posted by: Steve | November 28th, 2007 at 3:11 pm

58. 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

    Posted by: Karen | November 28th, 2007 at 5:02 pm

59. 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.

    Posted by: amyliag | November 28th, 2007 at 8:58 pm

60. 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?”

    Posted by: Meg | November 29th, 2007 at 8:37 am

61. 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

    Posted by: Dara Sundberg | November 29th, 2007 at 1:48 pm

62. 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.

    Posted by: Albert | November 30th, 2007 at 7:38 am

63. 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 …

    Posted by: "honey sweet" | November 30th, 2007 at 11:00 am

64. 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 …

    Posted by: "honey sweet" | November 30th, 2007 at 11:00 am

65. 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 …

    Posted by: "honey sweet" | November 30th, 2007 at 11:00 am

66. 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.

    Posted by: Jan | December 1st, 2007 at 12:48 pm

67. 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

    Posted by: kb | December 5th, 2007 at 9:02 am

68. 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

    Posted by: Cesar | December 5th, 2007 at 11:31 am

69. 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

    Posted by: Katie Lynch | January 12th, 2008 at 7:32 am

70. 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!

    Posted by: Katie Lynch | January 12th, 2008 at 8:09 am

71. 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.

    Posted by: Catherine | January 13th, 2008 at 6:46 am

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