Thursday, July 5, 2012

The wind beneath my wings....


My fellow 'betes bia, Cassie Giesberg, CDE is up to her shenanigans, again. She blew me away with this post she wrote on my behalf. I am so lucky for every single one of you and the endless support I have recieved from the diabetes community.
Yadda yadda yadda, sniffle, sniffle



An Open Letter…



To Whom It May Concern (insert interested party here):


Kelley Crumpler (Mrs. Crump, or “Crump”, as I like to call her) did not ask, goad, or threaten me at gunpoint to write this follow-up. I’m going to do it anyway, because I like Kelley and what she’s about, and I think she deserves to know she’s not alone here.

I “met” Crump after she “friended” me on Facebook a year or two ago. Since that time, I’ve come to know and really like the work that she does. In fact, I admire her for it. I admire her sticking out her tongue at diabetes every day, and saying, “eff you”, and letting others know that it’s okay to do that—as long as you get back on the horse and keep going after you’ve had your moment. I love that because she’s been a card-carrying member of the D-Club, she’s made a life effort into learning the science of diabetes and giving validity to the feelings that go along with having a chronic illness. And I love that she has never given up—even when it’s much easier to do so. She is passionate—a girl after my own heart. And she is not alone.

I, too, am very passionate about diabetes education—particularly with kids and their families. I firmly believe that education equals success. In my three years as a diabetes educator, I’ve seen countless kids and their families take a diagnosis that inspires fear, anger, and other negative emotions, and become empowered; these families are ready to “fight the good fight.” Likewise, I’ve seen kids who’ve given up on themselves—and everyone else has, too—and realize that they can do this. Not everyone is a success story, and I always knew that would be the case, but I definitely do think I gave these families something to think about.

I love being an educator. I love that feeling when I see the proverbial light bulb switch on, and people realize that they can be successful, but they’re also free to have their feelings about this condition—that those feelings are valid. I absolutely believe that with almost 30 years of personalT1 experience under my belt, I had a perspective that many educators don’t have the “advantage” of possessing—and that made me able to connect. Being an educator gave my life a lot of purpose; I realized that I could answer “Why me?” Because these families need someone who’s “been there, done that, bought the t-shirt, and lost it” and come out on the other side. I was happy to be that champion.

Unfortunately, even in the world of chronic conditions, there are politics. These politics are less concerned with education and its benefits, and more concerned with dollar signs. And when that happens, it’s not the providers, the administration, or even me that is directly affected: it’s the patients. This makes me furious.

In my own situation, I had been a devoted educator for almost three years. I don’t think that I, along with a few others, brought a new energy to an environment plentiful on low morale. I wanted to start support groups. I wanted to implement classes. I wanted to help people learn to take charge of their care so that when they entered the big, bad adult world, they would be prepared. I was shut down at almost every turn. It was one excuse after the other: “we don’t have the staff”, “we can’t do _______”, “we can’t bill for that.” The list goes on an on. The focus became such on turning a profit, that my life became a living hell. My health finally succumbed.

Long story short, I finally resigned. When I handed in my resignation, I was thanked for all my hard work, and asked to contact a local agency and let them know that I left of my own volition, “so we can have a working relationship”with said group. I did so with the knowledge that people aren’t stupid.

So I guess Kelley and I aren’t allowed to have any space to express our feelings—either about work or our own trials with diabetes or health issues. It’s not enough that we put in a workday dealing with diabetes, only to go home to deal with diabetes. I don’t say this is a self-pitying way, but only to put some perspective on the issue, and say how ludicrous it is that we can’t have our own space to vent in order to be healthy. What’s even worse is that people who have no idea what we do are more concerned with their own egos than what’s right for the people they serve. And there’s no amount of blood, sweat or tears that Kelley or I put in that can make up for the fact that those people are the ones who lose out in the end. My heart bleeds for them, a) because I feel like I failed them by giving up, and b) because I don’t know what they’re going to do for support.

For what it’s worth, Kelley, I support you. I’m proud to call you a colleague, and more importantly, a friend. I know you’ll keep finding ways to fight the good fight. If you need someone on your team, I’m here.


As you like to say, peace, love, 'betes,

Cassie

Monday, July 2, 2012

Sometimes, it ain't so sweet


Some of you may not know this, but this summer would have been my 6th year working at the camp I also attended as a kiddo, where I learned to give injections and that I could grow up and be "normal". Anyone that knows me knows my love for camp, and I speak of it often...to friends, patients and colleagues. 
So consider me flabbergasted to find out that said camp doesn't want me back this year. They don't want my expertise (there are usually only 1-2 diabetes educators, 1 Endo, and many MANY trainees that know NOTHING about type 1 or pumps) or experience. They don't want the relationships I have formed with campers or families, or the med staff volunteers I recruit. All because of this. My blog. My outlet. My huge branch into the diabetes world. They don't want parents associating me or my views with their camp.
I was heart broken, it was handled piss poor, and I'm also effing pissed. I speak for local clubs to recruit donations for said camp. I hang posters and fill out applications for campers to go. Shit...I had already allotted a percentage of my book deal as a donation for a new infirmary on camp grounds. So. Very. Sad. And the uneducated individuals responsible for these decisions have no idea about me. No one cared to give me explanations , no one went to bat for me, or cared to challenge these decisions, despite positions of power. My heart has a hole the size of Kerrville because of it, and I have truly learned who I can, and can't ever, trust.
The diabetes Gods look out for those who represent, though. Without my blog, I never would have met Cassie Giesberg or been invited to speak at Camp BlueBonnet, near Austin. It was love at first sight, and I can NOT wait to go back next summer to offer my services, expertise and donations. The sugar Gods smiled upon me when they sent me to Camp BlueBonnet!
This brings up another question. Those of us that blog, and dare to say the un-sayable, are we just sitting ducks? Waiting to get shat upon, just for our beliefs and vocabulary? When I worked for Company X (Schmomni Plod, for new readers) I was straight up told that if I posted 1 word on this blog, I could face instant termination and legal implications. WhatThaFructose. Just for preaching the good word?? That was one of the MANY reasons I left Company X, and haven't regretted my departure for one, single, Medtronic loving day.
Why do we put ourselves out here? These are my inner thoughts...these are things I implement in my practice...why do I share them with you? Because...it's the right thing to do, and if I can make one diabetic person laugh on a shitty sugar day, my job is done.
I truly love what I do, and do what I love. I will not quit until everyone knows my name, the true definition of type 1 diabetes, and until we are all walking around with new artificial pancreases, that are covered 100% by insurance. I won't quit until kids and adults stop receiving quack-ass diagnosis and treatment plans, and I definitely won't quit until everyone is an ambassador for their disease state. I want to advocate for those that can't, and educate for those who aren't as fortunate as I have been in the diabetes world.
Ok.
Good talk.
Now...go change someone's life..or recycle or something.