Type1 for 30 Plus Years

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Type1 for 30 Plus Years

For those who've had Type 1 diabetes for a long time. I don't really care how long. Just long.

Members: 287
Latest Activity: 6 hours ago

Discussion Forum

Our role (8,520 years w/ diabetes at minimum) ?

Started by Stuart. Last reply by Stephaniebeth May 12. 5 Replies

I am in stunned awe of the profound diabetic experience(s) which this 30 plus years group possesses. 8,520 years presuming only 30 years.Many (most?) appear to have significant diabetes experience…Continue

Tags: 8520, 1000, serious-experience, diabetes, experience

Symlin?

Started by ANTONIA RETMAN. Last reply by Robert Yancey May 9. 6 Replies

Any other long time Type 1's on Symlin? And how is that working out for you? I'm 40 and was diagnosed at the age of 3. Thanks for any infoContinue

Tags: Symlin

Memories I'd like to forget

Started by Marion Mifsud. Last reply by Mike May 2. 16 Replies

I was diagnosed at age 6 and am now 59. Trying to keep from losing kidney function 30% left. I remember the glass needles with the thick needles that could have a bard on it. I don't know if this…Continue

T1D - Discrimination or Not?

Started by Robert Yancey. Last reply by earthling Apr 23. 7 Replies

Hi All, After recently joining Emily's awesome interview with the CEO of Dexcom, I realized that I missed associating with fellow T1D'ers. So, I thought I would share with you a recent experience…Continue

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Comment by melindalaw on April 2, 2012 at 8:38am

I know the feeling. I am 56. 51 years ago I was diagnosed. I was told I would not live really past 25.. I celebrate every birthday with relish. People who do not have the Big D cannot understand my feeling about celebrating a birthday. When you are told as a child that you do not have a long time on this earth, it changes everything, forever. Happy Birthday

Comment by melindalaw on April 2, 2012 at 8:35am

Comment by Baby Peanut on April 2, 2012 at 8:27am

haha, good for you & keep it going, another 40 at least!

Comment by Sam I am on April 2, 2012 at 8:02am
I am happy to announce that I just turned 40. This is huge for me because as a newly diagnosed child, we never thought I would live that long. So, to all those doctors 33 years ago....in your face! Here's to another 40!
Comment by MikeO on March 20, 2012 at 11:56am

Liz – They’re right that there is no point in sending claims to Medicare, because they haven’t gotten coverage approved yet. They have to apply to Medicare for it to be covered as a regular Medicare benefit. Dexcom is a little company and maybe doesn’t know the Medicare system, but Medtronic (the other big CGM manufacturer) certainly does. There’s nothing magical about getting Medicare to cover something. It’s hard, but not magical. They have to provide the data that the CGM really works and really reduces A1c and that it’s not prohibitively expensive. They have clinical trial data that shows both those things.

The companies and JDRF are the ones that got the non-Medicare insurers to cover CGMs for the non-Medicare population. They just have to realize that there are more Medicare Type 1’s than they think and they need to help them get CGM’s covered by Medicare. You did the right thing by calling everyone you did. If more people do what you did, things are much more likely to change.

Mike

Comment by Baby Peanut on March 20, 2012 at 9:39am

mike o., regarding cgm's & medicare-i've been in touch with jdrf, cgm manufacturer's & finally my congressman(didn't want to touch my medicare hmo)! his office actually got back to me very quickly, got some info & said they will look into it & get back to me. i don't expect anything to come of it, when i spoke to a dexcom rep, he told me that medicare told them not to even bother to submit claims, they don't recognize cgms. i will let you know if i hear anything, liz

Comment by Jason Casey on March 13, 2012 at 11:12am
To Spanishrose9668, I check my BG 10-13 times a day and it is a bit annoying. My best response to 'painful fingers' is use the side of the individual finger, not the tip, and use the outside, left-side on left hand / right-side on right hand. I also switched to a guitar with nylon strings and I am learning the piano. No matter what lies they tell you re: Type 1, it doesn't ever FEEL any better, but there's only one way to know...
Comment by Richard157 on March 11, 2012 at 5:39pm

Alan, are you talking about proof needed to get the Joslin medal? My hospital keeps patients records for 0nly 10 years. You do not need proof from a hospital. My parents and doctors from my early years had died, and a medalist told me that I could have a couple of people who knew me at the time, or near the time I was diagnosed, write letters. My sister and a cousin wrore letters telling some of the things they remembered from that time. The letters were sent to Joslin with my application. They were accepted, and they mailed me the nedal. When I participated in the Medalist Study they were easily able to see that I had been a type 1 diabetic for a very long time. Only medalists are permitted to take part in the study.

Comment by Sam I am on March 11, 2012 at 4:25pm
Sorry, I jumped in and started a discussion without introducing myself. I've been diabetic for 33 years now. This web site is something new for me--I had no idea folks could live so long with diabetes, and now, reading this group, I still feel pretty young. I've never taken great care of myself, happy to have A1c's under 9 as I've been a lot higher. No significant complications, although my hands now get tingly when my blood sugers drop. I have recently in the past couple of years become more unaware of low BG. I was on the pump in the very beginning (less my first year), then stopped after I graduated high school and could no longer afford it. Started back up again in 2007 with the Cosmore, and now with the minimed and a CGM. I was told in the beginning that I was "brittle", but now I am starting to wonder if that really exists. I am trying to remember that no matter how long I have had this, that there is always something new to learn.
Comment by Richard157 on March 6, 2012 at 1:16pm

I'm pleased to hear that, Shoshana. I am anxious to read about your getting the medal. Maybe you can post a picture of it here.Let us know when it arrives. It can take awhile.

 

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