What is the Promise to Remember Me Campaign?

The JDRF Promise to Remember Me Campaign asks Members of Congress to "promise to remember" those affected by diabetes when making decisions regarding diabetes research.

JDRF's Outreach Manager in Los Angeles contacted me and asked if I would meet with Congresswoman Karen Bass to ask for her support of JDRF and diabetes research as part of the Promise to Remember Me campaign.

This campaign is important as it develops the relationships between federal legislators and JDRF advocates. This year, the focus is on research for diabetes, in particular the artificial pancreas.

To learn more about the artificial pancreas, here are two great videos from CNN.

"'Bionic' Pancreas Gives Patients A Break"

"Artificial Pancreas Is A Game Changer"

The only way, as of now, to have access to the artificial pancreas is through clinical trials. Being chosen for one of these trials seems harder than winning the lottery! I have continually signed up, but to no avail. Although, the FDA is stating that this Artificial Pancreas should be available to homes in five years. A glimmer of hope! The Promise to Remember Me meetings are necessary in order to get the proper funding from the government so more people can have these types of technologies available to them. When I get to try out the Artificial Pancreas, the first thing I will do is drink a smoothie! The whole thing. And not the light kind with Splenda. As of now, I would never do that. That is unless I wanted to visit the hospital.




I felt very honored to be chosen to attend this meeting. It can feel so helpless as a person with Type 1 Diabetes just waiting for a cure or the next best technology. It is events like the Walk to Cure Diabetes and these meetings that make me feel like we can create a difference. It was meetings like these that got the contiguous glucose monitoring system on the map and I hope we can push for more technologies that will improve the lives of everyone with diabetes.

The event was very educational. I felt so insignificant in a room full of educated and important people. Yet, Congresswoman Karen Bass was personable and kind. Representing JDRF was the Outreach Manager who contacted me (Her husband is a Type 1 Diabetic), a Nurse (who also was a Type 1 Diabetes) and myself. After she spoke beautifully, there was a long line to speak with her. Once we got to the front of the line, she made us feel like we were the most important people in the room. Her eyes were full of warmth and she listened to our every word. Here is a picture of us showing her our pumps and me giving her my card for this blog.



Right after this photo, Congresswoman Bass told us that her mother had Type 1 Diabetes. As sad as it is to hear that another person has diabetes, it's also nice to know we have someone in congress who understands our struggles and is on our side.

She had agreed to support us, and that promise was captured with this photo.



The most powerful portion of the evening though was in meeting Albert (far right). He was the person who had invited JDRF to this event. Albert told us the very sad story of how his son, a type 1 diabetic, at ten years old, had passed away due to a diabetic coma. Our eyes filled with tears as he told the story. I often forget, how life can literally slip away from us so easily. He stressed the importance of taking care of ourselves and how he wanted to become very involved with JDRF in his son's memory.

There is no sorrow like the loss of a child. Any time I hear of a death due to type 1 diabetes, of course I get scared and I am reminded of how serious this disease is. In honor of Albert's son and all the others, we MUST make a different and we MUST fight.

You can help by clicking ‘Continue NIH Research like the Artificial Pancreas’, asking you to send an email to your Members of Congress and remind them of the important contributions the Special Diabetes Program (SDP) has made towards diabetes research.

Help break misconceptions about diabetes. Join the DOC blog list for Socks4Life!

During the summer before second grade, a new family moved in on my street that had two kids, one of which was my age, Michael. He was a really nice kid and after getting to know him, we soon became friends. Living on the same street, we were on the same bus and would often meet up and play basketball, soccer, or some other sport after school. For about a month, he never mentioned to me that he had diabetes. The day I found out, we were playing basketball in my driveway and we had a close game going. We were only a few points away from ending the game when he said that he had to run home. Although I reiterated that we were almost done, he insisted he would only need a couple minutes at home and then he’d come back.
After we finished our game, I asked him if everything was ok. That’s when I learned that he had diabetes and he showed me this gizmo that was attached to the inside of his pants (I now know it was a pump). He explained to me what the pump was and that he had diabetes. As any curious 7 year old would do, I asked him a lot of questions about the pump and about diabetes. He opened up and told me everything about the disease, answering every question I had. He told me that he had to leave because he wasn’t feeling well and needed some juice. He then explained to me how he needs to test his blood sugar levels, keep track of everything he eats, take his medicines, etc… This sounded very complicated and a lot to handle, but he made it seem like it was nothing at all.
To this day, we are still friends and I’m yet to see him allow diabetes to get in his way of accomplishing anything. When we play football or basketball, I’ll tackle him to the ground and contest every single shot he takes (and we’re not afraid to foul either). He also played on the soccer team for his college for 2 years. I was a little shocked when he told me he was the first player with diabetes his coach ever had on the team. We talked in depth about this and he told me that many coaches are reluctant to accept players with a disease such as diabetes due to liabilities risks with the school. We both knew this was ridiculous and that patients with diabetes can play sports just like anyone else! Great athletes such as Jay Cutler, Ty Cobb, Walt Frazier, Jerry Stackhouse, and Jackie Robinson led outstanding careers while fighting the battle against diabetes.
Michael also told me a rather chilling story over the winter vacation for the reason he and his girlfriend broke up. They had been together for almost 6 months, and things seemed to be going well. He told me out of nowhere, she called everything off because she didn’t want things to get more serious between the two of them. When he asked why, she said she didn’t want to date someone she couldn’t eventually have kids with. She thought because he had type 1 diabetes, that his kids would have the disease. Although we know this isn’t true, she still believed this hurtful myth.
For reasons like this, my company has been working with the American Diabetes Association and the Diabetic Online Community to create this diabetes guide and info graphics to de-bunk common myths and provide facts behind the disease. If you have a blog and would like to help us with our mission to provide the truth behind diabetes, join our DOC directory so that others with the disease can join you and your community!

Bio: As the philanthropy and outreach coordinator for Socks4life, I have truly been blessed to have the opportunity to give back to the diabetes community. Whether we donate diabetic socks to those with neuropathy or sponsor our local Step Out walk, my team is dedicated to doing our part to improve the lives of those with diabetes. We won’t stop our efforts until a cure is found! To connect with me, feel free to email me at abruk@socks4life.com.

I'm not sure why it took me so long to find this program. Lately, I have felt the need to refresh myself. Sometimes, even with diabetes for so long, I feel like I can know nothing, then one minute I am am a specialist...


If anyone has heard of this program and has any feedback, I'd love to hear, as I am seriously considering this but I know it's very expensive.


After some advice from a doctor, I decided to investigate and I loved what I found. I was quickly provided with lots of information after emailing the contact person. This is what they sent me and more. If you'd like me to forward you info you can email me as well. authoroftheld@gmail.com

Diabetes Outpatient Intensive Treatment (DO IT) Description

Tune-up your diabetes management at Joslin Clinic’s DO IT Program

Whether you were diagnosed years ago or just recently, whether you have type 1 or type 2 diabetes, you know that with good strategies for nutrition, exercise and medication, you can enjoy better health, experience far fewer medical complications, and significantly increase the quality of your life.

This popular 4 consecutive day comprehensive program of medical care, personal training and group seminars is designed for people with type 1 and type 2 diabetes. Included in the program is a physical assessment as well as small group and individual sessions with a nurse educator, registered dietitian, exercise physiologist and social worker.

If you have a challenge, such as a physical disability we need to be informed.

The DO IT Program is usually conducted Monday through Thursday and is conducted exclusively in our Boston location.

What You Will Do in DO IT
Assessment

On the first day of the program (Monday), you are assessed individually in one-on-one appointments by the DO IT team, which includes a staff endocrinologist, a nurse educator, a registered dietitian and an exercise physiologist. Although you will have laboratory work done on the first day, please do not fast on the first day of the program. Follow your regular routine on the first day. There is also an introductory meeting for all participants and their guests, conducted by a member of the Joslin Mental Health Department.

On days 2, 3 and 4, individual consultations with the DO IT physician, lectures and group exercise sessions are scheduled from 7:30 a.m. to 4:00 p.m. On each of these three days you eat breakfast, lunch and snacks at Joslin Clinic.

We strongly encourage you to bring a guest (spouse, relative, and friend) who can learn about the challenges of managing diabetes and become part of your support team. Other than meals, there are no additional costs for your guest. Included in the program is a support group for all guests conducted by a social worker.

Participants also receive digital imaging of their retinas for diabetic eye disease using the Joslin Vision Network (JVN) technology. This does not take the place of a comprehensive eye exam.

Consults
A comprehensive eye exam with a staff ophthalmologist experienced in diabetes eye care, is available upon request. Any other consultations may be ordered by the DO IT physician, if deemed necessary. We try to schedule any additional consultations around the DO IT schedule so that you will not miss any lectures or exercise sessions.

What Is the Cost?
While many insurance payers cover much of the cost of the DO IT program, we advise you to call your individual insurance carrier about your plan’s coverage. There is, however, an out-of-pocket expense of $500 for each participant for non medical services within the program that are not billable to insurance. A list of these services follows on page five.

Patients are responsible for:
• The $500 out of pocket fee
• Co-pays required by your insurance, which may include one co-pay for each MD office visit and each day of education
• Deductibles or co-insurances assigned by your insurance.
• Services not covered by your insurance





Education Fee~ Diabetes Self Management Training
This fee is based on the intensity of your medical needs and includes the services of the DO IT nurse educator, registered dietitian and exercise physiologist. 18 hours of diabetes education using billing codes G0108 and G0109.
Estimated educational charges are $2274.

Total DO IT charges for medical services generally are $3200.

If you have insurance coverage, all of your medical services will be billed to your insurance carrier. You are responsible for co-payments, deductibles, and balances after insurance. Managed care plans require referrals and co-payments for medical office visits as well as education classes. We strongly advise that you contact your insurance carrier to verify coverage for this program.



DO IT Program Non-Medical Services and Fees (May, 2005)

The following non medical services are not billable to any insurance carrier and are included in the out-of-pocket expense of $500:

• Meals $90.00
• Books $92.00
• Research Lecture $26.50
• Support Groups Session (including guests) $69.00
• Official Joslin Clinic DO IT Tote Bag $15.00
• Pedometer $20.00
• Stretching Bands $37.50
• 6 months telemedicine $150.00 (6 months at $25 per month)
Total $500



What You Will Eat
Please follow your regular routine before coming into Joslin Clinic on your first day. Please have breakfast and please take all medications. We will provide lunch. You should be prepared to eat dinner and your evening snack on your own each day.

Participants have breakfast, lunch and snacks on Tuesday, Wednesday and Thursday at the clinic. If your guest joins you for your DO IT meals, there is an additional fee of $155.

What You Will Leave With
At the conclusion of the program, you will receive a summary letter, one for you and one for your physician at home and/or Primary Care Physician (PCP), detailing what you’ve accomplished in the program, any changes made to your regimen, as well as any other significant findings. You’ll also receive a laboratory summary for you and your PCP.




DO IT Program Tuesday through Thursday Schedule
Your Monday schedule will be sent to you with your confirmation letter.

Tuesday
7:30am: Patient Lab on 2nd Floor
Check-in with DO IT Team nurse
Choose from Buffet Breakfast
Exercise Video
8:00am: Matching Insulin to Carb: Per MD order
8:40am: Introduction
8:45am: Diabetes…the Facts
10:00am: Food for Thought
11:00am: Exercise Session in Fitness Center
12:00pm: Lunch
1:00pm: Medications
2:00pm: Exercise Your Heart
3:00pm: Skills Training/Check out with Case Manager

Wednesday
7:30am: Check –in with DO IT Staff~3rd Floor
Choose from Breakfast Buffet
BGAT per order of MD
8:30am: What Goes Up Must Come Down (part 1)
9:00am: Research Lecture
10:00am Research Tour
10:15am: Muscle and Bone Tune–up
11:15am: Making Healthy Food Choices”
12:15pm: Lunch
1:15pm: Responding to Blood Glucose
2:15pm: Exercise Session in Fitness Center/Family Support Session
3:15pm: Skills Training/Check out with Case Manager

Thursday
7:30am: Check-in with DO IT Staff~3rd Floor
Choose from Breakfast Buffet
8:30am What Goes Up Must Come Down (part 2)
9:00am: Exercise Session in Fitness Center
10:00am: Eating for a Healthy Heart
11:00am: Ways to Invest in Your Health”
12:00pm: Lunch
1:00pm: Jeopardy
2:00pm: You Did It! Bringing it All Together
3:00 pm: Check-out with Case Manager

Even if you haven't heard of this program before, what are your thoughts on it? Does it sound worth it?

To me, it sounds like exactly what I need.

They have a convincing list of "WHY DO IT?"

In following up on people who have gone through the DO IT program, we’ve found:

* Their A1C results have improved by an average of almost 1.5 points. Those with the greatest risk of complications—with A1C readings greater than 10—reduced their levels an average of 2.75 points in the first 3-6 months.
* The number of their emergency room visits and hospitalization was cut in half the first year.
* The time lost from work or school was reduced by 43 percent the first year.

There are lots of books, brochures and articles filled with diabetes advice. But your path to better glucose control is going to be unique to you.

Is this the answer I've been looking for?

As a 23 year old Type 1, I think I've done pretty well with my life. I graduated from a great University, have a great job, great boyfriend, great friends, loving parents and amazing brother.

But sometimes, Diabetes manages to make me feel like I have nothing to celebrate.

Sometimes I feel like this:


And sometimes sometimes like this:


And then like this:


I sit here writing this with blurred vision as my blood sugar was high this morning. I am so frustrated with diabetes. The thing that bothers me the most, is I don't win. I guess I win by trying to act as normal as possible with my blood sugar. Great, "Congrats! You get to work really super hard at something most people just get and don't have to think about!! Hooray!"

I can't wait for a cure. I wouldn't even know what to do with myself. Imagine That man not carrying that bag he carried for most of his life, or how much better that truck would run without all of that stuff on top of it.

That's what I want. A world where my truck is a convertible. A fast, sexy, light convertible. Able to make tight turns and drive down PCH without a worry of complications.

Sometimes I need to remind myself, that my truck is still a good ol' truck. It gets me from point A to point B and I have a few dents but I still am loved and lucky.

My father sent me an article from the Wall Street Journal about a new meter from Telecare that sounds very exciting to me and is launching next week.



After reading the article, here are what I believe to be some pros and cons.

Pros
I like the idea of having my numbers instantly transmitted to a data base base online that can be accessed with a password or an iPhone app. I think it would make things much easier to address current problems vs when you actually get to the doctor weeks later. This technology also allows the doctor to respond to your readings, which is very cool.


I agree with this author in that with real-time sharing, people with diabetes will be held more accountable for skipped readings and I think it will bring better numbers overall.

I love the idea of a large color screen! I hate when I'm in dark places, i.e. in a movie or in bed and I have to balance my cell phone as a flash light.


Cons
It's expensive! When most meters are free these days, this one will cost you!

"The Telcare meter costs $150 for a starter kit that includes the meter, a wall charger, a case and accessories. The cost drops to $100 if you subscribe to a one-year supply of test strips. The strips cost $56 for a container of 50, or $36 with the subscription. Insurance may reduce these costs.

"

I would never have thought about this, but BATTERY LIFE. I change my meters battery maybe once every few months, this meter needs to be plugged in, much like a cellphone.

"The company says if you turn it off between readings, a battery charge should last for 200 to 300 tests. If you leave it on, it will go to sleep between tests and need to be recharged every two or three days. In my tests, doing three readings a day for four days, I didn't need to recharge it, but I turned it off when not in use."

It is larger than most other meters out there, which I don't love since I already hate carrying a bunch of supplies around town with me.

And on a last final annoying note, the meters and strips, are only available from the company, though they hope to sell in drugstores soon. I hate to admit this, but sometimes I forget to order supplies in a timely manner, and I can't image waiting for shipping vs the 15 minutes at CVS.


NOW THE REAL QUESTION

It seems that I listed more cons than pros, but still I am very interested in this meter. I think the real time transmitter and screen sound exciting enough to me to give it a try.

What are your thoughts??

Having Type 1 Diabetes is not the same as having a friend with diabetes. What to say? How to say it? It can be hard and confusing. Luckily, Joe Morris, who offers people relationship advice on Best Online Dating Sites has written a couple of tips to help those people who have friends with diabetes.

Thanks Joe!

How to Support a Friend with Diabetes
If you have a friend with diabetes, naturally you want to be there and help with any struggles that they are going through. However, helping isn’t always easy. To really be supportive and show your friend that you want what’s best for them, be sure to follow the tips below:
Learn about diabetes. To better understand what your friend is going through, it is important for you to understand what exactly the disease is. Throw any myths you’ve heard out the window and get the facts. Head to the web to research credible sites and don’t be afraid to talk to your friend, doctors, or family members you know who have diabetes. Everyone’s diabetes is different and those who have the condition also manage their medication, diet, activity and blood sugar monitoring differently. Finding out the specifics of your friend’s condition will make it easier for you to truly support them.
Don’t label your friend. One of the most important aspects of helping a friend with diabetes is recognizing that diabetes doesn’t define your friend and it doesn’t make them a person who isn’t “normal.” Your friend’s condition is not the center of their lives, so do not make it the center of your friendship. Of course, it is a serious disease, but the millions of people inflicted with it are still able to enjoy full, active and happy existences. If your friend has a difficult time accepting the disease, just try your best to be understanding and a shoulder on which to lean.
Encourage healthy practices. So that your friend can have an easier time managing their blood sugar, help by encouraging healthy habits that involve activity and the limitation of foods and drinks that are chalk-full of extra sugar. To not come across as a nag (and to improve your health as well!), try making healthy choices together. Leading healthy lifestyles doesn’t have to be boring—have some fun by cooking meals with one another, going for walks/runs, joining fitness classes, and by just encouraging each other to be healthier in general.
Know how to react. To be able to help your friend, it is crucial to learn how to respond should your friend’s blood sugar level fall. Talk with your friend so that you can come up with a plan if a problem happens to arise. If you notice that your friend seems very dazed, weak and tired, there could be a problem. Explain to your friend the signs you’ve noticed and ask if they might need to do a blood sugar check or eat something to raise their blood sugar levels. Remember to stay calm, and notify someone if the problem is serious. Your friend will appreciate the fact that you are able to help in a scary situation.

Joe Morris is a guest post author who shares with us his ideas for supporting a friend with diabetes. Joe also spends his time working for Best Online Dating Sites where he offers his advice for successful relationships.

Happy Holidays everyone! A lot has happened and I have been meaning to fill you all in.

The holidays started with my friends having our 10th annual Gingerbread House Party. These are the same friends I've had since high school and everywhere we still continue this festive tradition. Since I have Jewish, this is really my only "Christmas" tradition and I enjoy it so much :)

My boyfriend and I built, "Santa's Outhouse" that had actually started out as a London telephone booth lol. The picture is at the top. Let me know your thoughts! Every year we try to do something creative and I love what everyone comes up with.

Gingerbread party does bring lots of obstacles for a diabetic though. Did I mention tons and tons of candy? Beyond any candy lover's dreams. I had a hard time resisting and unfortunately ended up with a pretty high number. :( Next year I NEED to have tons of more number friendly food choices. Do you all have any that work for the holiday time?

This year we added a new element to the party and I LOVED it! A white elephant gift exchange. I ended up with a FANTASTIC gift of a pink dog snuggy!


My little puppy looks so cute in it! lol

What are some fun holiday traditions you all had this year? Any new ones?

~~~~~~

One of my favorite gifts this year was from my boyfriend. I have been wanting a supplies bag from Stick Me Designs.

I had always loved their bags, in particular the owl one since I love owls. Here is the outside:



And here it is with my supplies inside:


I would say the only draw back is I wish the elastic was a little tighter. My supplies tend to fall out of the little places meant for them. Other then that, I love that I can find my bag much easier than when it was just black and I love that I have so much space to have all of my supplies in one place.

What were you favorite holiday gifts this year? Any of them diabetes related?

Happy 2012!!!