Thursday, July 31, 2014

What A Difference A Week Makes: Finding Diabetes Support, Online & Off

What a difference a week makes. Last Thursday I wrote about my Endo appointment, my less than wonderful A1C, how burned out I was feeling from diabetes and how both my Dr. & CDE were amazing. Also, between you and me, I think I was also going through some CWD FFL withdrawal. 
Anway, last week my CDE Cheryl, invited me to an Insulin Pump Support meeting she was having. At one time I attended those meetings on a regular basis, but due to budget issues there hasn't been an Insulin Pump Support Meeting in years - until this past Tuesday. Here's how it went~
My drive to Philly was shorter than expected and as I inched towards the Walt Whitman Bridge, I started to feel really good about things. 
My excitement finally bubbled to the surface in the parking garage elevator, as soon as I stepped in and realized that the woman next to me was wearing an insulin pump. 
And I knew exactly where she was going. 
Me: Are you on your way to Cheryl’s meeting?
Her: Yes, yes I am!!
And simultaneously we both grabbed our pumps, giggled and started talking. 
Together we walked towards our shared destination and we talked about our endos, how great the practice was and how amazing Cheryl the CDE was. 
And when we walked in the building, past the security guard and towards the room where the meeting was held, we saw Cheryl. 
And at that moment I was so grateful to Cheryl for being such an amazing type 3, for always being there for her patients and for getting the group up and running again after such a long hiatus... and for asking me to attend. 

And I’m not going to lie - I was really grateful that Cheryl procured food from Panara Bread, which included a variety of tasty sandwiches and cookies with the carb counts written out. 
FTR: A Panara big chocolate chip cookie is 58 grams of carbs - And it’s worth the bolus.
But I digress. 

I could write how amazing it was to be in a room with people who “got it" and how everyone said “OMG, that happens to me, too,” whenever anyone mentioned something D related. 
I could wax poetic about how people shared their feelings of being alone sometimes - even if they knew they weren’t. I understand that feeling very well -  I know you do, too. And I mentioned the Diabetes Online Community multiple times to the group - who wasn’t even aware that the DOC existed until: 
  1. Cheryl told them about my blog as we were going through the group introductions
  2. I told them about the DOC and give them twitter search terms like #dsma, dsma twitter chats, #doc #diabetes, Blog Rolls, Facebook groups and communities and how there is indeed a D Tribe out there online in the room we were sitting in, not to mention The Diabetes Unconference that's happening next year.
And they were really excited to hear that the DOC existed.
But this post is supposed to be about the awesome Insulin Pump Support Group meeting.  

I’ll admit to being blown away by the fact that some of the group members had been living with diabetes for decades, and by decades I mean 60 years, 53 years, 50 years and 40 years  - They inspired me and I wanted to hug them and hold them tight. 
There were were people who were recently diagnosed as adults with t1 - or who’d who came to their t1 status by way of a pancreatectomy. All of them were doing what they needed to, even though change can be difficult - Especially when your pancreas is the one that decides to make the change, and after it's been working just find for you &well into your adult life. They reminded me about life throwing us curve balls just when we think everything is peachy. They inspired me and I wanted to hug them and hold them tight. 
And there were also people like me there. People who weren’t 50 years in, but who’d lived with diabetes longer than they hadn’t. And they inspired me and I wanted to hug them and hold them tight. 
In each of them I saw bits of myself. As I was, as I used to be... And as I hoped to become. I was grateful to each and everyone of them - just like I'm grateful for each and everyone of you. 
Whenever I think of the Diabetes Online Community or finding other's in our D Tribe in real life, expected and or by kismet, I ALWAYS think of the following quote by C.S. Lewis that I found on TwistedSifter. 
Yep, sums up the DOC perfectly!
Photo with quote courtesy of TwisterSifter
This thing called community - Of being there for one another - It's so important. 
If you're part of the DOC, you get that. 
And I know Cheryl gets that - She's always been so supportive and she asked me to present at  a future meeting on DOC resources. 
If your Endo's office doesn't offer a support group, reach out to them and suggest that they start one - And bug the crap out of them until it becomes a reality. 
And I know I don't need to tell you this, but I will anyway. 
If you know of any PWDs (people with diabetes) off-line who might be feeling alone, reach out to them and tell them about the DOC and then ask them if they'd like to grab a cup of coffee or a glass of wine - And then bug the crab out of said PWD or PWDs (and in the nicest way possible,) until it actually happens. 
Peer support for every single person living with diabetes is so incredibly important - And a little red wine, or coffee, or cupcakes between PWDs every now and then doesn't hurt either ;) 


Rhonda B said...

Sometimes the best kind of injection for diabetes is the injection of people in real life who "get it." The support and love from the diabetes community, both online and offline, is something I greatly treasure, and desperately need to keep me on track.

Cara said...

Crying. (((Hugs)))

Laddie said...

Once again coming to your blog through Feedly on my iPad did not play nice with comments. I should just go straight to Safari and not try commenting on Blogger through Feedly. I have learned to copy comments before submitting so if they're lost, I don't have to rewrite, But if this is a repeat, please delete!

As always, wonderfully said. If I ever need to explain the DOC to anyone, I'll send them to this post. Like you, I'm lucky to also have in-person diabetes friends and acquaintances from local meet-ups. The bonds are powerful for sure and make the burden just a bit lighter.

Janine D said...

As the woman who was on that elevator with you, I want to say that I share your sentiments. All of my family and friends asked how my pump group was and it was so hard to put into words how great it was to be surrounded by people who get it. Thanks for sharing this.

StephenS said...

Kelly, I'm so glad I waited until Friday to read this. Just the pick-me-up I needed for the weekend. Thanks!

Minnesota Nice said...
This comment has been removed by the author.
Minnesota Nice said...

Yeah, funny, isn't it, that one of our local groups meets at Panera - must be something in the genes.
Scott Johnson, that dear sweet lad, gently and persistently kept inviting me to local meet ups, starting about 8 years ago. Well, it took me 4 years to get convinced, and, even though I'd been hit by a car that day and unknowingly had a ruptured spleen, I made it to my first one. An instant and complete sense of belonging....