Moments of Wonderful

…rather than a lifetime of nothing special. A diabetes blog.

Moments of Wonderful - …rather than a lifetime of nothing special. A diabetes blog.

Petition

A few weeks ago when I picked up my personalized plates at the DMV, there was a guy sitting under a tent out front with a petition. There was nothing under or around the tent advertising the cause for which the man was soliciting. All that anyone who passed by the area could see was a pop-up tent, a six foot table, and a guy sitting behind the table in a folding chair looking at his cell phone.

I couldn’t drive away without putting the new plates on my car, so while I was working I was able to observe the man for a few extra minutes. Every so often, he would yell at the people passing by to sign his petition to (fill in the blank). He never stood up. He never explained WHY anyone should sign the petition. He just sat back, reclined as far back in his folding chair as possible, and yelled at people to sign his clipboard. Not a single person stopped by his table in the time that I was there.

Now I realize it’s summer in the desert so it was pretty hot out that day. I have no idea how long the guy was there or how engaging or excited he may have been earlier in the afternoon. Advocacy can be exhausting. However, having no perspective on any research the man may have done for his cause or any background information on why he wanted me to sign his petition, the last thing I wanted to do that afternoon was respond to his shouts.

In order to avoid becoming “that guy” for causes related to living with diabetes, I am excited about the information provided in the Diabetes Action Hub contained on the Diabetes Advocates website, which I heard about for the first time at MasterLab earlier this month. It has information about the latest advocacy efforts available for people related to the diabetes community. This includes information about legislative action, the sponsors and supporters of the bills, and the position statements of major diabetes organizations regarding the legislation. The site also includes information about how to continue to engage in the diabetes community (online and offline) and how to become a better advocate.

Diabetes Action Hub

I never want to be the person holding a clipboard yelling in a parking lot who everyone ignores. I am hopeful that the Action Hub will help the voices of people with diabetes not only become louder but also connect with the stakeholders (policymakers, pharmaceutical companies, insurance providers, people with diabetes, etc.) necessary to move the efforts forward to our goals.



Disclosure: I was able to attend MasterLab and the Friends for Life conference this year as a result of a scholarship from the Diabetes Hands Foundation offered to the Diabetes Advocates. The scholarship covered my airfare, hotel, and conference registration. All opinions continue to be my own.

Lucky Dog*

secret nascar fan

Side note: Not Ryan Reed. Not Junior either (*swoon*).

Most people don’t know about my appreciation for a good stock car race. For the first few years of my life I lived much closer to my extended family. I don’t remember much about that time, but I do remember watching NASCAR at my grandma’s place.

During my job in Florida, there was one apartment that I lived in where I wasn’t able to get cable TV reception. The only shows I could watch was what I was able to capture on the antennas and so I got back in the habit of watching the Sunday afternoon races. During a conference that brought me to Ohio several years ago, I even watched a few of my favorite drivers in an exhibition on a dirt track.

Some people with diabetes might get their inspiration from an Olympic level cross-country skier, from an American Idol finalist, or from a world-class triathlete. I like that there’s a guy out there on the oval relying on his pit crew to give him fresh insulin when they give him fresh tires (top off his insulin when they top off his fuel? Insert other NASCAR slang here).

* This is also a NASCAR term. When a caution flag goes up, the first driver who is a lap behind gets to catch up to the lead lap.*

I should be sleeping

I should be sleeping
I should be sleeping [1] instead of keeping
These late hours I’ve been keeping [2]
I’ve been pacing and retracing
Every step of every move [3]
Even though I’m feeling so right [4]
I’m so happy [5] still I know
I should be sleeping
Instead of dreaming
About you [6].

***********

[1] Like that furry mess (#notbes) hogging my space, making me sleep diagonally, and not even helping me treat my low.
[2] Middle of the night lows on Sunday and Monday night. Not a pattern I want to continue.
[3] Did I bolus too much for dinner? Are my basal settings correct? Is it because of the hotter weather? Is it because of the alcohol at dinner?
[4] WRONG. Typical low symptoms.
[5] At least I know my BG is finally coming back up. I don’t know if it’s happiness, but there is certainly comfort in the diagonal arrow.
[6] Dreaming or thinking about diabetes in the lyrics of a country song.

CGM in the cloud for the adult T1D

I saw the first example of CGM in the Cloud data when Scott came down to the lobby one night during the Friends for Life conference.

CGM in the Cloud basically refers to data from a continuous glucose monitor being stored somewhere other than just the receiver. Once the data is in the cloud it can then be viewed from basically any other place with just internet access.

Immediately the idea completely intrigued me, but I wasn’t sure if it was something that I personally wanted or needed. I can easily see the benefits for the parents of children with diabetes and the peace of mind from being able to see their child’s numbers when the child is away from them at school or a friend’s house. I can see the benefit for an adult with diabetes with a partner who worries while one of them is away.

But what is the value of having your data in the cloud without the idea of sharing that data with anyone else?

Before I decided to take the project on, I asked many people that same question. I specifically harassed Scott and Kerri and I appreciate their patience. I questioned those in the CGM in the Cloud Facebook group and they are beyond helpful.

#wearenotwaiting

It took me a few hours of driving around town to gather the necessary pieces – most of the time at one specific store looking for one specific cable with four separate sales people. It took me another few hours to get everything set up at home. I’ve now been running the system on and off (mostly on) since late Friday night.

A few initial impressions:
* Much like the first few days after I got my first CGM when I couldn’t stop pressing the button to look at the number, I find myself looking at my wrist quite frequently to check the number there.

CGM in the cloud - dual screens* As I was originally typing this post I started to feel fuzzy – one of my initial hypoglycemia symptoms. I was actually charging the phone that powers my system at the time so I was not using the system. When I checked my CGM I noticed I had been trending down for a little while but was still ONE point away from hitting the 70 mg/dL alarm threshold. I confirmed on my meter and was greeted by a 55 mg/dL. I wonder if I would have noticed (and been able to treat) the impending hypoglycemia sooner if I had been able to watch the trend easier. On the other hand, do I want to be THAT tied to my data? Is it information overload that will quickly lead to burnout? I’m not sure yet.

* I am using a receiver from my previous insurance coverage to run the system and still using my current (in warranty) receiver separately. I am not sure I would risk the integrity of my receiver and its sensitive USB port if I only had access one.

CGM in the cloud - on the road* This past weekend I took a short road trip with some diabetes buddies. Being able to see both my number and the rate of rise or fall was especially helpful as the driver. However, an unintended consequence of being left-handed was wearing the display on my right wrist in full view of the d-mom riding shotgun.

* Wendy is one of the great treasured friendships I’ve found because of our mutual connections to diabetes. Right now, I am loving hearing the updates about her bionic daughter, and I am sharing about my cloud experiences with her. I provided her with the way to access my data, so I suppose I should have been surprised when I woke up and saw a text from her yesterday morning.

wendy CGM in the cloudIt was a rough night that night and woke up two separate times to treat lows. One of the concerns that a lot of people have with sharing the data is the reaction other people will have when they are out of range, so I asked Wendy what she thought when she saw my morning graph.

“My first thought was that I wondered if you were awake… and, if so, did the low wake you up, or was it your usual wake up time. I was going to call, but then decided to wait a few minutes. If I didn’t see a change in 5 min, I’d call then. Turns out you had it all under control :)”

Figuring out a balance of how and how much of our information to share is something we all will have to figure out as options like this become more available.

I am not waiting.

CGM in the cloud - we are not waiting

We are not waiting.

Lifeline

MasterLab quoteIt’s been two weeks since I got back from MasterLab and the Friends for Life conference and I haven’t yet sorted through the pictures I took and these are the first words I’m writing about the experience. It was a good break but a bit longer than I originally intended.

That doesn’t mean I’ve been totally disconnected. I’ve been busy with some local advocacy activities. Additionally, the You Can Do This Project had a booth at the Friends for Life conference again this year and I’ve been busy editing the pictures and prepping the videos to share what we captured during the conference (see last year’s videos here 1, 2, 3). I am excited for the first video from this year to be published in the next few days.

One of the main speakers during MasterLab was Mike Manganiello. He described a five-step model for advocacy.

  • Attention: putting a face on the cause/action
  • Knowledge and Solutions: a group of people who are REALLY smart and can speak the language of the researchers, politicians, game players
  • Community: connecting individuals working together
  • Accountability: holding stakeholders’ feet to the fire as a solution is pursued
  • Leadership: Allowing great leaders to be great leaders because they know they have people supporting them. Manganiello believes leadership is grown, nurtured, built, and taught.

The entire diabetes community has a place in each step of the model but I think we each have an obligation to also figure out where the skills and talents that each of us possess can best bring the diabetes community and our advocacy efforts forward. I think the area of community is where I thrive.

Manganiello described community as getting “lifelined to individuals working together.”

There are 30 millions people in the United States who have diabetes. That could be an incredibly powerful force working together. It is also an incredibly large group of people who need education and support. The diabetes community that I have found in person and online is my lifeline and I am motivated and passionate about helping other people find that lifeline as well.

First things first

I have plenty of awesome stories and pictures from MasterLab and the Friends for Life conference this year, but I have to share about a decidedly not awesome thing that happened first.

As I mentioned, before the conference I was in New York for my cousin’s wedding. This required packing for 10 days away from home – a lot of clothes and a lot of diabetes supplies.

I remote bolus - when I had insulin in the pump.

I remembered to bring my meter remote so I could bolus on the dance floor during the wedding reception.

I did a full site change and filled my cartridge with insulin last Thursday morning right before getting picked up for my ride to the airport. I change my infusion sets and cartridges separately depending on timing, so I only changed my infusion site Sunday morning because I still had insulin left in the cartridge. But by Monday morning, it was finally time for an insulin refill. And that’s when I noticed.

I had not packed a single insulin cartridge for my pump.

I also did not have the blue plunger that attaches to the base or the syringe cap that fits on top.

I had a vial of insulin and no method to get it into my body.

My first step was the same thing any other grown adult would do – I told my mom (we were sharing a hotel room). She asked how I could forget something so important.

I reminded her that while I did forget cartridges, I did remember: multiple infusion sets, two Dexcom sensors, two types of tape, three different meters (every day use, meter remote, ketone meter), ketone strips, BG test strips, glucose tabs, lancets, lancing device, spare batteries, gluten free snacks, and I even managed to fit some clothes in my suitcase.

The next thing I did was check to see if I could purchase syringes over the counter in New York state, and was happy to find I could purchase a package of ten. Now I knew I could take insulin once my pump ran out.

Still in the parking lot of the grocery store, with syringes in hand, I went online to see if there were any members of the diabetes online community near by.

I tried Twitter.

The request was shared on Tumblr.

The call went out on Facebook.

I called the local JDRF chapter. No supplies available.

I called the local ADA chapter. No supplies available.

I called the local Joslin Clinic. No supplies available.

I called Animas customer service. There are no local representatives near my location. I received several phone calls from various levels of the support team as they tried to do anything they could. They offered to overnight me supplies to my hotel. The only problem with that offer was that I was leaving the hotel at 5 AM the next morning.

makeshift MDI

And that was the best part. I knew I just had to get to Florida. If I could just make it to Florida, I knew that there would be a plethora of cartridges available to me.

The first few hours of MDI went better than expected but by the middle of the night and through my time on airplanes and in airports the next day, I just could not get ahead of my missing basal and keep my blood sugar down.

The happiness I felt when I finally got to the hotel and saw friends I hadn’t seen in a year or more was overwhelming when added to the happiness I felt when I saw the pump cartridges one of them was holding in her hand.

Diabetes Advocate – Revisted

As I make sure I have enough clean clothes and bug spray for my upcoming travels, I thought it would be a perfect time to revisit some old posts. Considering I am headed to Florida to participate in a few different advocacy activities, it is important for me to review my personal definition of diabetes advocacy. This post originally appeared on my blog in April 2011 (and has been edited slightly to reflect changes in dates and other related timeline accuracy issues. Other than that, no content has been changed). Another post from January 2014 explored a similar topic after the Medtronic Diabetes Advocate Forum.



Advocacy.

I have been thinking a lot lately about what it means to be an advocate.

A group of people recently traveled to Washington DC to advocate for diabetes among our Congressmen.

Another group of people were invited to California to advocate for the causes of people with diabetes to interested parties at Medtronic.

There was a press release for an episode of True Life on MTV that was reworded in response to contact from the diabetes community.

Even Reader’’s Digest, – my source for quality jokes when I was a kid, – was recently targeted in social media forums by people with diabetes who were upset about an upcoming special edition.

In 2009, a group of people touched by diabetes traveled to Indiana to meet with a pharmaceutical company and share their thoughts and opinions on how best to work with people with diabetes. In 2010, I joined the group in Orlando and together we spoke with the American Diabetes Association and the American Association of Diabetes Educators about how to navigate the world of social media without alienating their audience. This summer [2011] I will be with the group again as we meet in San Diego.

There is a Twitter chat on Sunday night on healthcare communications in social media and another one on Wednesday nights about diabetes and social media advocacy. You can even listen to blogtalk radio shows on the same topics the next day.
There are countless blogs, vlogs, tweets, forums, message boards, and even books all about diabetes. I even am a member of a group called Diabetes Advocates.

So, what does all that mean? What is an advocate?

First of all, a definition is important, so let’s consult the dictionary.

An advocate has several related meanings

  • To speak or write in favor of; support or urge by argument; recommend publicly.
  • A person who speaks or writes in support or defense of a person, cause, etc.
  • A person who pleads for or in behalf of another; intercessor.

I find it interesting that there is even evidence of the usage of the word advocate in the New Testament of the Bible. When Jesus is explaining the Holy Spirit that will come to the people after he returns to heaven, He describes the Spirit as an advocate and the word in Greek particularly means

  • “one who pleads another’s cause, who helps another by defending or comforting him. (John 14:16; 15:26; 16:7, Easton’s 1897 Bible Dictionary)”

As a Christian, it is encouraging to me to find that the idea of being an advocate is not a new concept, but even more so, that being an advocate is not always about fighting on behalf of someone but can mean actually being a comfort.

If you look through my archive you won’’t find a copy of the e-mails I sent to Reader’’s Digest or MTV. If you search through my tweets you won’’t find more than one or two with comments to share with the people at Medtronic and not an @readersdigest in the bunch. The controversy about MTV barely hit my radar except for reading the expertly written post by someone whose name rhymes with shmabby shmayer.

I usually participate in my local JDRF walks and had a meeting (that went nowhere) with the local representatives about increasing the adult Type 1 involvement, but that is the extent of my connection with them. [NOTE: GOSH THIS HAS CHANGED IN RECENT YEARS! WHAT A DIFFERENCE A CHAPTER MAKES! New walk link.]

Regardless,

I am an advocate.

I advocate by sharing my life. Not just my life with diabetes. I used to feel guilty about that. Not anymore. This is my life.

I advocate by sharing about all the aspect of my life.

You may think that someone with diabetes can’t go skydiving. I have.

sara 007

What about traveling to countries where the temperature reaches over 100 degrees, or those described as “third world” by some? Done that too. Since diagnosis I’’ve been to Mexico, Israel, Jordan, and Haiti.

My Indiana Jones Moment
Clayson and me

Snorkeling? So far, in the Red Sea and in the Caribbean.

Red Sea
Aquapac 2

Do people with diabetes heal slower and should avoid piercings and body art? Better not tell the ear I got pierced this weekend about that.

IMG_0328

I advocate for the fact that diabetes cannot stop you living your life.

Diabetes is not your life.

Are you an advocate?



Disclosure and additional thoughts: Similar to Kim’s recent uniquely worded disclosure, I am attending the MasterLab and Friends for Life conference on a scholarship from the Diabetes Hands Foundation. A beautiful side benefit is that I get to promote the You Can Do This Project in the exhibit hall during the conference. Diabetes Hands Foundation is covering my airfare, room, and conference registrations.

In the scholarship essay, I actually wrote that I wanted to attend because my advocacy voice often differs from others and I wanted to be there to present a different perspective from what people normally hear. Everyone’s voice matters, and I will happily stir the advocacy pot to make it happen.

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