Tag Archives: DOC

Silly Hats and Caps Update!

Last April I wrote about how some of our friends and I had decided to form a sort of advocacy group called the Silly Hats & Baseball Caps.  Well we’ve been meeting for breakfast every Tuesday Morning since then and have we been busy!

With Bob’s surgery and all, I am way behind in filling you in on what we’ve been up to.  But it is high time I start sharing some of the things we’ve accomplished!

  • First of all we have shortened our name to “Silly Hats & Caps”!
  • We have a purpose:

We are trying to make a difference

While having fun

Chatting, Laughing

and finding a Cure for Diabetes

  • We have a face book page http://www.facebook.com/pages/Silly-Hats-Caps/230127823715355  We would love for you to “like us”!
  • We hosted our First Annual Garden Party  http://wp.me/p1qABL-iT
  • We organized and held our First Annual Peanut Butter & Jelly Golf Tournament  http://wp.me/p1qABL-hD
  • We held a bowling get together for family and friends with diabetes  http://wp.me/p1qABL-ko
  • We have made 40 centerpieces for the JDRF Walk Kick Off Luncheon (and are also using a version of them as “leave behinds” for the JDRF Promise to Remember Me meetings with our congressmen http://bit.ly/GA8DWj
  • All of us Silly Hats got together for a wonderful Holiday Party
  • We met at the beach for a little exercise and a great lunch on the Pier
  • We collected favorite recipes from family, friends and JDRF Advocates and put together a Cook Book that we are selling with all proceeds going to JDRF!
  • Our local chapter did a write up on us in their monthly newspaper.  You can check it out here:  http://wp.me/p1qABL-iH
  • We volunteer at health fairs and other events sharing about JDRF and the need for a cure for Diabetes

In the next few days I hope to get you all caught up with more of the details of some of these things we have done!

I have to tell you that not only have we, as a group, accomplished so many things, it is wonderful to be able to meet every week with friends and know that you can laugh  and cry  and hug and share with others just because!!  Just like the DOC, but in person!

When Bob was in the hospital…they were all there, right by our side, laughing, chatting, and praying!  We are eternally grateful for our wonderful SILLY HATS & CAPS!

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Filed under Advocacy, Government Day 2011, JDRF Walk to Cure, Promise to Remember, Silly hats and Baseball Caps, Spreading Awareness

With a little help from a Ninja!


August 1, 2011 was the start of JDRF’s Promise to Remember Me Campaign.  The purpose of the “Promise Campaign” is to make sure that all of our legislators remember us and our loved ones living with diabetes when they are making important decisions that will affect anyone living with Diabetes.   It is our hope that by meeting face to face with each of our congressmen and women and senators and telling them how diabetes has affected us and our families, they will be able to put a face to the disease and vote for issues that will make living with diabetes easier, healthier and safer and bring us closer to a cure.

As the advocacy team leader for our local Orange County Chapter, it is one of my responsibilities to make sure we secure appointments with both of our California Senators and all 5 Congressmen.  As with the Promise Campaign, I always feel it is better to do things in person whenever possible.  So my husband and I decided to have a get-together at our home, provide a simple dinner, talk about the Promise Campaign and develop a strategy to accomplish meeting with our representatives.

We sent out the invitation to the advocates from all 5 congressional districts in our area.  We had 25 passionate JDRF advocates join us.   We all shared our stories with each other while eating dinner.  After eating and visiting,  the OC’s and DOC’s very own Ninjabetic, George Simmons gave a great presentation about his journey with diabetes and why advocating for JDRF, diabetes and the DOC is so important.  We then had someone from each of the 5 districts volunteer to get in touch with their congressman and get a meeting with them scheduled!

That was back in the last part of July…Today I am so happy and proud to say that the OC has the most awesome advocates around.  As of this Friday we will have completed 100% of our Promise meetings, 5 for 5 for Orange County!!  Each meeting was attended by awesome advocates who shared their stories of how living with diabetes has affected them and their families.  They have given faces to Type 1 Diabetes and hopefully when these representatives return to DC and cast their votes on issues that affect diabetes care and cure, they will remember these awesome advocates, young and old!

One of the congressmen we met with has a friend who has some major problems because of diabetes.  He “gets it”!   He has seen first hand, why it is so important to find a cure.  He told us that even though there is no money and things are really tough in DC, he is still going to try and get an increase in diabetes research funding next year!!

Two years ago we had a promise meeting with one of our representatives and that person lumped all diabetes into the same pot…saying that the reason for so many new cases of diabetes was because of people’s diets today….Well, this year..you could tell some serious homework had been done…When one of the children was showing how her pump worked, the congressperson shared with us how her parents have the “other kind” of diabetes!  She is starting to “get it”!

We left this bouquet of flowers with pictures of some of each congressperson’s advocates pictures on them and asked them to “PLEASE REMEMBER ME”!

If you had not had the opportunity to attend a “Promise to Remember Me” meeting, I would highly recommend that you contact your local JDRF office or me, to see how you can attend a  meeting in your area.  Whether or not you agree with the Congressman’s political views is not important…but building a relationship with them is.   Putting a face on diabetes is the first step in getting them all to “GET IT”!!

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Filed under Diabetes online Community, Promise to Remember, Spreading Awareness, Uncategorized

Meeting with some of my Hero’s!!

As most of you know..I am a grandmother and a Type 3 (once removed)!  That is..I do not have diabetes, my children do not have diabetes, it is my oldest grandson that was diagnosed with  Type 1 Diabetes!

As any of my friends and family will tell you, I am the definition of a Mother Hen!  Not necessarily a good thing, but none-the-less it is a part of who I am!!   “D” showed up 7 years ago and threatened a member of my family..  “D” did not just come in and  steal a part of my grandson (his pancreas), it took a piece of all of us and forever changed our family!  I HAD TO do what I could to make “D” give it back!

I volunteered with JDRF (Juvenile Diabetes Research Foundation) and started out just participating in the Walk to Cure Diabetes every year.  Then I became a JDRF Advocate and periodically wrote to my congressman asking him to please do what he could to make sure that diabetes research is funded so that a cure can be found as soon as possible.  And 2 years ago I was asked to be the Advocacy Leader.  Saying “no” is a very hard thing for me to say and thank goodness.  Being the JDRF Advocacy Leader I was invited to attend their Government Day in Washington DC.

And so it began….

At this year’s Government Day, I was introduced to the Diabetes Online Community.  Something I didn’t even know existed!  Listening to all of those young men and women talk about the DOC and the support it gives to its members , I knew I had to learn more.  I think it kind of started as a joke, but somehow this old gramma (thanks to Scott and Kerri) left DC that week with my own blog site and twitter account!

The DOC not only offers support to each other that is beyond description, it is so much more.  It is, in almost every sense of the word, FAMILY!  The members of the DOC laugh together, they cry together, they educate each other, they all love unicorns and cupcakes, they advocate, they vent their frustrations without being judged, they are there for each other 24/7, they encourage each other during tough times and they celebrate the victories!

They live their lives, day in and day out, 24/7 with no vacations from “D” and shout “YOU CAN DO THIS!”  with pride!  Each and every one of you living with diabetes are my heroes!

I am so grateful to George http://ninjabetic.squarespace.com

for inviting me to a D meet-up last Saturday. He is going to be speaking to some of our advocates next month about the DOC and I am so excited!

I got to see Scott http://scottsdiabetes.com/

and not only thank him again for setting me up with my own blog and twitter accounts, but I got to get one of his famous “BIG HUGS”!  He is for sure, one of my biggest heroes!!!

And I got to meet Jenny and her husband http://web.me.com/wyldceltic1

who loves Mac’s, her dogs and music!  She definitely has all things “APPLE”!

and last but not least…..

Brad Slaight aka “Meter Boy” http://www.captainglucoseandmeterboy.com/

who kept us laughing the whole time!  (Not to mention he is “half the man he used to be”!)

Thank you all for your courage, commitment and dedication to the DOC and  for making me feel so welcome at your table!

3 Comments

Filed under Diabetes online Community, Government Day 2011, Grandchildren, JDRF Walk to Cure, Spreading Awareness, Thank you, Uncategorized

Diabetes Etiquette for Type 3’s!

Diabetes Etiquette

My last post was about the awesome event that our local chapter put on called A Day of Hope and Health!   One of the presentations from that event was on the psychological effect diabetes can have on, not only the one with diabetes, but their loved ones as well!  Susan Guzman of the Behavioral Diabetes Institute gave a great talk and both my husband and I really enjoyed listening to her and what she had to say.

There was  literature available about her institute, as there usually is at these types of events.. one of which  was a very small  (business card size) brochure that really hit home for me!  It was called “Diabetes Etiquette for people who DON”T have diabetes”!

Since, as you know, I don’t have diabetes, I read it and after reading it, I knew I had to share it with my friends on the DOC!  If you all have seen this before, I apologize, but if not, I thought you might be able to share with your friends and loved ones.  It, once again, sheds more light on how what we say and do affects those of you that have to live 24/7  with Type 1 Diabetes.

  1. Don’t offer unsolicited advice about my eating or other aspects of diabetes.  You may mean well, but giving advice about someone’s personal habits, especially when it is not requested, isn’t very nice.  Besides, many of the popularly held beliefs about diabetes (“you should just stop eating sugar”) are out of date or just plain wrong.Go to fullsize image
  2. Do realize and appreciate that diabetes is hard work.  Diabetes management is a full-time job that I didn’t apply for, didn’t want and can’t quit.  It involves thinking about what, when and how much I eat, while also factoring in exercise, medication, stress, blood sugar monitoring, and so much more – each and every day.View Image
  3. Don’t tell me horror stories about your grandmother or other people with diabetes you have heard about.  Diabetes is scary enough, and stories like these are not reassuring!  Besides, we now know that with good management, odds are good you can live a long, healthy and happy life with diabetes
  4. DO offer to join me in making healthy lifestyle changes.  Not having to be alone with efforts to change, like starting an exercise program, is one of the most powerful ways that you can be helpful.  After all, healthy lifestyle changes can benefit everyone!
  5. DON’T look so horrified when I check my blood sugars or give myself an injection.  It is not a lot of fun for me either.  Checking blood sugars and taking medications are things I must do to manage diabetes well.  If I have to hide while I do so, it makes it much harder for me.
  6. DO ask how you might be helpful.  If you want to be supportive, there may be lots of little things I would probably appreciate your help with.  However, what I really need may be very different than what you think I need, so please ask first.View Image
  7. `DON”T offer thoughtless reassurances.  When you first learn about my diabetes, you may want to reassure me by saying things like, “hey it could be worse;  you could have cancer!”  This won’t make me feel better.  And the implicit message seems to be that diabetes is no big deal.  However, diabetes(like cancer) is A BIG DEAL.
  8. DO be supportive of my efforts for self-care.  Help me set up an environment for success by supporting healthy food choices.  Please honor my desiciion to decline a particular food, even when you really want me to try it. You are most helpful when you are not being a source of unnecessary temptation.Temptation
  9. DON”T peek at or comment on my blood glucose numbers without asking me first.  These numbers are private unless I choose to share them…  It is normal to have numbers that are sometimes too low or too high.  Your unsolicited comments about these numbers can add to the disappointment, frustration and anger I already feel.Bart Peeking
  10. DO offer your love and encouragement.  As I work hard to manage diabetes successfully, sometimes just knowing that you care can be very helpful and motivating.First summer love

If you would like to learn more you can visit their website at http://www.behavioraldiabetes.org

Behavioral Diabetes Institute

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Filed under Diabetes online Community

We Will Stop You!

I really, really have a hard time giving diabetes credit for anything.  However, that being said….

Because of this insidious  disease that sneaks into our homes and  steals our pancreas, our innocence, our time, our money, our health, our sleep, our blood, our peace of mind,  and on and on……

  • I have made lots of new friends
  • I have been uplifted by the generosity of people
  • I have learned that one person can make a difference
  • I have learned that if you don’t ask…you probably won’t get
  • I have been to Washington DC twice for JDRF’s Government Day
  • I have learned to blog
  • I have learned I can still speak to a room full of people
  • I have fallen in love with the DOC
I do thank you, Diabetes for these things you have left in return for what you have taken, but we WILL find how you get in and STOP you in your tracks very soon and you will have to return everything you have taken from us.  I PROMISE YOU THAT!

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Filed under Diabetes online Community, Uncategorized

Breath Test for Diabetes

Blog post #2 

Dear Dr. Galassetti,

Back in 2008, my grandson participated in studies you were conducting at UCI Medical Center.  That research was being done in hopes of eliminating skin punctures for people with diabetes.

As you know, our loved ones, who have diabetes have to test their blood sugars 5 to 10 times a day by pricking their fingers.  You believed that you had the answer to making that process less painful.  This method of measuring blood sugar levels would be one more step in making life just a little easier for them while they wait for their cure.

You collected breath samples from young diabetic athletes while blood sugar levels were high and again as levels fell after insulin was administered. Using a technique developed to test air pollution, you and your researchers detected high concentrations of methyl nitrate — a byproduct of the damage to body tissue — when blood sugar levels are too high and as the blood sugar was corrected, the methyl nitrate levels in their breath went down.

Your technology would allow all people with diabetes to be able to test their blood sugar levels by breathing into a device rather than having to draw blood!  You were encouraged by your results.  But you also said it may take up to 10 years to bring this to market.  UGH!!

Please let us know where you are at in this exciting technology and also let us know if there is anything we can do to help bring it to market and made available for our loved ones!  Do we need to give the FDA another push?  We are getting pretty good at that!  Last month we (JDRF and DOC Advocates) banded together and successfully convinced congress to sign a letter to the FDA urging them to approve outpatient testing of the Artificial Pancreas as quickly as possible!  We’re hoping that out patient testing of the Artificial Pancreas will start this summer!

While certainly not a cure, your device would make the wait for a cure just a little easier and perhaps convince people to test more often.  Just think…   No more test strips!  No more Lancets!  No more calloused fingers!  No more punctures!

Thank you,

Type 1 Advocate Gramma

If you would like to see the short video telling about that research testing, which(by the way) features my grandson, along with bit parts from my grand daughter, son and daughter-in-law..please follow this link.

Breath Test For Diabetes

I’m sorry I can’t figure out how to bypass the advertisements…but it is only 15 seconds and then goes to the feature.

4 Comments

Filed under Baseball, D-Blog Week, Grandchildren, New Technology, Sports

D-Blog #1 Admiring Our Differences

Since I was introduced to the DOC a little over a month ago, I’ve not found many (in fact, I haven’t come across any)blogs by grandparents of anyone with diabetes of any type.

That means that every post I read from each and every blogger is coming from a different perspective than mine.

I do not have of diabetes.   I am not a parent of a child or adult with diabetes.   I am not a spouse of a person with diabetes.  I am not in the medical field.  But I am the grandmother of a wonderful young man with Type 1 Diabetes and I desperately want to do what I can to help make his life easier until a cure is found!  I want to understand how his body works without a useful pancreas and I want an insight to what he might be feeling, but not sharing with us.  I want to make sure that what I say and do, will be a benefit, not add to his struggles that come with living with this disease that never lets you let your guard down or let’s you take a day off!

I have learned that sometimes, no matter how hard you try, or what you do,  your bg #’s are not going to cooperate!

I  have learned that what works for great bg #’s today might not (and probably won’t) work tomorrow.

I have learned that there is no good type of diabetes.

I have learned that many in the medical field have a lot to learn about diabetes!

I have been reminded that our children with diabetes, grow up to be adults with diabetes.

I have learned that the Diabetes Online Community (DOC) is made up of some very incredible men and women willing to share many of their struggles and innermost thoughts about diabetes and living with it.  They do this so that no one suffering with diabetes, of any type, will ever have to feel alone, they do this to enlighten those of us who do not have diabetes and along the way, they have made friendships that will last their lifetimes!  They do this day in and day out, through bad times and through good times.

I have learned that what you say can stay with someone a lifetime.

I have learned that effects from a single high or one low can impact your body for days…not just hours.

I have learned the incredible power of social media.

I have learned about the band, Blunt Lancet!

I have learned about the unicorn!!

and the power of a cupcake!!

Thank you all so very much for making this grandma feel a part of this most inspiring community!!!

You are all my HEROS!

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Filed under D-Blog Week, Diabetes online Community