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: 351
Latest Activity: Sep 9

Diabetes Forum

You Did Not Take Good Care Of Yourself???

Started by Richard157. Last reply by Marie Torregrosa Sep 7. 20 Replies

Those of us who have been type 1 for a very long time have probably dealt with a lot of ignorance from people giving us bad advice. Has anyone ever told you that "You Did Not Take Care Of Yourself"?…Continue

Joslin Medalist Program

Started by Emily Coles. Last reply by shoshana27 Jun 8. 55 Replies

Hey fellow D long-timers,If you've had diabetes for 50 years or more, you're eligible for a…Continue

Tags: medalist, gold medal, Joslin

Our minds, our thinking... ???

Started by Stuart. Last reply by Stuart Jun 5. 25 Replies

Consider with this much experience, how has diabetes fundamentally effected the ways you think about & filter things?!?!How has our diabetes changed our psychology whether we are aware of it or…Continue

Tags: effects, mental-diabetes, floss, psychological, behavior

Osteoporosis meds?

Started by Marypat. Last reply by Sue R. Feb 27. 3 Replies

Are there any T1s who are taking meds for osteoporosis? What is your experience? I have seen 4 doctors and have 4 different opinions and still no treatment plan.Continue

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Comment by ShelbyH on May 16, 2012 at 6:08pm
I'm freaking out in a good way! Shelby, my name is Shelby also! We can be the Diab Shelby's!
Great to meet you & Ben also.

Don't know too many other Shelby's & you are my first partner in diabetes crime! Yeay!

Take care message anytime!
~Shelby
Comment by Rene on May 16, 2012 at 5:56pm

How about 46 years. Does make me feel like an old lady. Oh well better old than the alternative.

Comment by shoshana27 on May 16, 2012 at 5:50pm

TO SHELBY & BEN I'VE HAD TYPE 1 SINCE I WAS NOT YET 3...AM 78+ NOW...GOOD LUCK & DON'T GIVE UP.

Comment by Richard157 on May 16, 2012 at 5:46pm

Hello Shelby and Ben, welcome! Both of you have been type 1 a very long time, and you must be doing something right to be here with us today. I have been type 1 for 66 years, and am very healthy.

Shelby, I had some retinopathy in both eyes several years ago. My ophthalmologist told me he would have to use laser treatment if the problem remained. I had appointments every four months. It did not get worse, but not better. In 2007 I started using an insulin pump and after a few weeks I was having fewer highs and lows. The trauma caused by a roller coaster control had apparently caused the retinopathy, and also some neuropathy. With a more stable control the retinopathy completely disappeared and the neuropathy rarely bothers me, but it is still there. A good A1c combined with stable control was the secret for me. Some diabetics can have that stability without using a pump, but I found it much easier with pumping.

I hope both of yo will get the Joslin medal after you have completed 50 years with your diabetes. Meeting in Boston with many other long term medalists is a very wonderful experience.

Comment by shelby on May 16, 2012 at 5:20pm

I've had type 1 for almost 43 years and I'm now 54. I, too, have never met anyone living with DM this long so I'm glad to talk to someone who knows what it's like. Every day is a challenge that's for sure. I do have retinopathy in my one eye for the last 3 years. For me, it's difficult to deal with. I get tired of reading articles of what to do to prevent complications but no articles to tell you what to do once you have one. It kinda makes me really mad as I'm sure there are some hints out there that could be told. I'm using the pump now which make my sugars more stable but sure have to put a lot of work into it. Testing sugars 10-12 times a day, changing set ups every 3 days, warning signals go off in my opinion way too often - it never ends but I guess.... things could be worse and all in all I'm pretty lucky. Would love to talk. I'm also new here.

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

 

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From the Diabetes Hands Foundation blog...

Where are you Medicare? The elephant was not in the room

  This was the question burning in people’s mind and passionately talked about yesterday and today at the General Sessions of the AACE/ACE Consensus Conference on Glucose Monitoring, an event to bring together in Washington, DC all relevant stakeholders to Read on! →

#MedicareCoverCGM Panel Discussion

If you follow the diabetes online community, you know that #MedicareCoverCGM is a big deal. We have continued to raise awareness on #MedicareCoverCGM because we believe that ALL people living with diabetes should have access to continuous glucose monitors (CGM). With Read on! →

Diabetes Hands Foundation Team

DHF TEAM

Manny Hernandez
(Co-Founder, Editor, has LADA)

Emily Coles
(Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Development Manager, has type 2)

Desiree Johnson  (Administrative and Programs Assistant, has type 1)


DHF VOLUNTEERS


Lead Administrator

Bradford (has type 1)


Administrators

Lorraine (mother of type 1)
Marie B (has type 1)

Brian (bsc) (has type 2)

Gary (has type 2)

David (dns) (type 2)

 

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