Monday, August 17, 2015

Type No Type

(C) Diabetes Ramblings
There are times in diabetes advocacy that it feels like we're fighting ourselves. "That's the other kind of diabetes" should not ever come between us and diabetes advocacy.

During last month's MasterLab, I heard several times the sentiment that we need to put the "types" aside and focus on *everyone* with diabetes.

We need to take that energy that is wasted in arguing amongst ourselves and channel it in helpful ways. 

We need to work together for better access to the treatment and supplies each of us needs to manage our diabetes. Even people with the same type have different needs. I may only need a glucose meter at this time, but my mom needs a meter and medication. We both have Type 2, but our needs are different. 

Even if we get the tools we need, like a glucose meter, we may not receive necessary supplies to go with it. Giving someone only one test strip per day does not give him/her the ability to adequately use that meter for diabetes management. 

When my doctor prescribes what I need to manage my diabetes, the insurance company shouldn't be asking what type I am. They only need to know that I have diabetes and this is what I need to manage my disease. Why shouldn't a Type 2 diet and exercise controlled elementary school teacher who can't stop to test while teaching six and seven year old children receive a CGM (continuous glucose monitor)?

Since each person's diabetes management is unique, it really doesn't matter what type the person is when determining what is needed for successful diabetes management. Let's look at the person and the needs, not the type. This is not a one size fits all disease. Not for diet, not for test strips, not for medication. 

To borrow from a made for TV movie, "We're all in this together!"

Thank you to Mike at My Diabetic Heart for designing this No Type image and Lizmari at The Angry Type 2 Diabetic for artistic input.

Friday, July 17, 2015

Rant Time!

Many times we try to show the positive side of diabetes. The amazing diabetes community. The joys of low carb eating. The world full of sunshine, rainbows, and unicorns.

Then reality hits. I get doughnuts as a special treat for my second child's birthday to celebrate her last year as a teenager. I really want one. Just one. Oh here's a small one. I'll just eat that. Then a little while later I start having that high glucose feeling. It's hard to explain but others with diabetes know what I mean. I kind of feel hot on the inside. My head feels funny. My body feels funny. My belly feels funny. It's not a feeling that can be put into words. I'm only in the 160s right now (two hours later) but it's somewhat hard to concentrate.

I'm usually pretty conservative with my words. I rarely curse. I even feel uncomfortable with words like stupid and sucks. However I'm cranky and fed up. Diabetes isn't fair! It isn't fair one bit. It downright sucks!

It sucks that I can't have more than one doughnut. Even that one makes my glucose go up.

It sucks that I go to 200 from a simple bowl of cereal.

It sucks that I have to watch what I eat.

It sucks that I can go low from cleaning the house.

It sucks!

I could end here with a change of heart talking about what is good about diabetes. Normally I do when I write these ranting posts. Not this time. This time I'm going to say "It sucks!" and let it sit there. Too often we're told it will be ok and to smile. We need to acknowledge the sucky parts of diabetes!

Sometimes we don't want to smile - and that's ok!

Thursday, July 16, 2015

The Faces of #MasterLab on Twitter


One of the resources I was introduced to during MasterLab was the database created by Symplur. They have created what they call the Healthcare Hashtag Project. You can search for Twitter hashtags based on tweet chats, conferences, various diseases, etc. What a wealth of information! I can't even begin to explain this resource, but if you head over to their site and play around a bit, I'll bet you'll be amazed like I was (and still am!).

According to Symplur, these were the faces of the MasterLab hashtag on Twitter between July 5 and July 10, 2015.  (Screen shot taken on July 11, 2015.)


Now to put some names (or Twitter usernames) to the faces. The first column are the top ten people mentioned with the hashtag MasterLab while the second column contains the top ten people tweeting about MasterLab, using the hashtag. It was lovingly brought to my attention that I tweet a lot. For those of you not on Twitter, yes, I am @rfamsramblings. You can tell that I am passionate about MasterLab! (Screen shot taken on July 11, 2015.)



Some of these people were attending MasterLab while others were following along from home. Some represent businesses or non-profits, while many are individuals who live with diabetes as part of their daily lives. (I'll admit that I know that there's at least one "bot" in the first screen shot above which automatically retweets sporadic posts.)

Regardless our role in the diabetes community, we share a common goal: access for all until a cure is found!

Monday, July 13, 2015

Diabetes Advocacy Has an Easy Button

Do you want to get involved with diabetes advocacy but just don't have the time?

As a busy mom of five, teacher, and recent masters graduate, I understand this completely!

Please let me introduce you to Diabetes Patient Advocacy Coalition! This is the diabetes advocacy easy button.

As stated on their site, "Join Diabetes Patient Advocacy Coalition to easily help keep policy makers’ attention on people with diabetes. Once you've joined, we'll keep track of issues, opportunities, and how to contact officials. We make it easy to for you to advocate while giving you the opportunity to tell your own story."

It doesn't matter what type you are. Type 1? Type 2? LADA? MODY? Diabetes issues affects us all. This site makes finding the issues and who to write to easy. Add a little personalization to the letter and hit send.

As a famous office supply store likes to say, "Well that was easy!"

Friday, July 3, 2015

The Two Faces of Diabetes

My diabetes seems to have two faces, or sides. The side I like to show in public, and the side I like to keep secret.

The public side of my diabetes shows the world that their misconceptions about Type 2 are all wrong. I exercise, I'm a healthy weight, I check my blood sugar on a regular basis, and I watch my carbs. This is the side that I like to present to the world. This is the side that shouts out, "Colas full of sugar didn't give me diabetes, so there!" The side that says that genetics is to blame more than anything else.

However there is the other side of my diabetes. It's the side that wants to get comfy in the recliner and eat a whole bag of chips in one sitting. The side that wants to eat chocolate chip cookies with milk until I have a tummy ache. The side that says "Not today!" to exercise. The side that thinks maybe I did something to "earn" the diagnosis of diabetes. The side that shows that I am human. The side that shows that I am not perfect. The side that wants to curl up in a ball and cry.

Honestly this is very close to how I feel as a mom of five kids. The public side is a very organized mom with five amazing kids. The other side is my cluttered house and lucky if I know what day it is sometimes.

Unfortunately our society only sees the side that I want to hide. The media portrays Type 2 diabetics as older, overweight individuals with unhealthy lifestyles. Where are the young, healthy Type 2s with some bum genes? I know we're out there. I've met many through the DOC and other advocacy work. Where are those who develop Type 2 due to other medical conditions such as PCOS? Why doesn't the media talk about that?

Why doesn't the media show us the side of diabetes that takes the blame off the patient and admits that sometimes things happen no matter what you do? When are we going to realize that correlation does not equal causation?

When are we going to stop shaming people who live day to day with a life threatening chronic illness?

Thursday, June 25, 2015

Countdown to #MasterLab

On Monday, July 6th, I will be on a plane to Orlando, Florida for MasterLab. I've posted about my anticipation again this year, but what is MasterLab exactly?

According to Diabetes Hands Foundation:
MasterLab is about building a sense of what is possible in Diabetes Advocacy. If you are called to advocacy MasterLab will connect you with people, resources and skills be be a better advocate. The best way to get a feel for Master Lab are the slides and video archive from the Diabetes Advocates MasterLab from the summer of 2014 at the bottom of this page. It was presented by the Diabetes Hands Foundation in collaboration with Children with Diabetes.
Last year's MasterLab involved a single day. This year, the event covers a day and a half. I love that it has expanded. Personally, I would like to see it grow even more as the interest in advocacy grows. Although an exact schedule isn't available as of yet, here is what we're looking at so far:
Tuesday, July 7, 2015 – 7:30am to 4:30pm
Presentations and panel discussions 
Wednesday, July 8, 2015 – 8:30am to 12:20pm
Focus Groups
(Edited to add: I just got a copy of the agenda. See it here.)

There is an "after hours" adult only networking event on Tuesday night that participants can register to attend as well.

I'm counting down! My flight and room have been reserved as well as registration for MasterLab completed.* Yesterday I scheduled a taxi to and from the airport out here. All that is left is my online check-in for the flight the day before and packing my bags. Oh what to bring! I'll need to make sure I have rooms for souvenirs for the family (and me!).

It's not too late to sign up. Go to the MasterLab registration page to join us. If you would like to try to win a free trip to MasterLab, Medtronic is having a contest. Go here and fill out the form by Sunday, June 28. I hope to see you there!

*Disclaimer: I have been offered a scholarship by the Diabetes Hands Foundation as part of my participation in the Diabetes Advocates program to attend the MasterLab. My travel, conference fees, and hotel are being covered by the scholarship, but the opinions and ideas (as well as excitement and anticipation) I will report on are my own.

Thursday, June 18, 2015

Ph.D. Candidate Needs Type 2 Help

Dianne Palladino, a Ph.D. candidate in Social and Health Psychology at Carnegie Mellon University, is seeking people to take part in an online research study for people with type 2 diabetes as part of her dissertation. 

It is completely anonymous, takes about 30 minutes, and those who participate will have the opportunity to enter a drawing for one of four $50 money orders. The survey is open to adults over 18 years old living in the United States who have been diagnosed with type 2 diabetes. 

If you are willing to help, more information and the link to the survey can be found here:  CMUDIabetes.

Let's take this opportunity to help her and the diabetes community as well.