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Posts tagged ‘DOC’

Diabetes Privacy?

I was thinking about diabetes privacy this morning while I was poking through the archives, and came upon this post from Diabetes Blog Week last year.  (Here’s a full list of the contributions generated by that prompt.)

What do you share about your diabetes? And what is on your List of Absolutely NOT Sharing, diabetes-wise?  For me, I don’t share my A1Cs with any regularity. Because as thick as my skin is in some respects, it’s admittedly very thin in others.

But hell yes I’ll post a photo of a 24 hour no-hitter on my CGM graph, because I’m proud of that accomplishment and I want to document it for my own sake.  Sometimes I feel a little creepy about posting a photo like that because it does not illustrate a true “day in the diabetes life,” but it’s nice to freeze frame a moment that I feel proud of instead of looking at a graph of Ms and Ws and throwing up my hands* in frustration.

Diabetes doesn’t always play nice, and I don’t always have a calm head.  Sometimes I go full Veruca Salt-rage when the effort into diabetes management doesn’t produce a stable flat line but instead reduces my glucose meter to what feels like a random number generator.

Diabetes goals feel really personal to me.  Back in 2009, when I shared that my A1C wasn’t under 6.5% when I conceived my daughter, I received criticism for not having my numbers under “good control.”  What gets lost in translation is the why of some decisions, like I was aiming for a slightly higher A1C earned without a pile of debilitating low blood sugar events.  My medical team and I had reasons for making specific decisions, ones that I don’t feel the need to constantly have to defend.

So I remain quiet about a lot of diabetes specifics.  I’ll share what medications I’m taking and what devices I’m wearing, but where my high alarm is set at on my Dexcom receiver might not be publicly shared.  I have my A1C taken regularly, but I don’t post a running tally of it anywhere.  The specifics of my data – blood sugar or blood pressure or weight or CGM values – do not define me as a person and do not dictate my ability as an advocate.

But seeing diabetes in context, the real juggling act that takes place to take a crack at making proper sense of this disease, is what I appreciate most about our community.

To revisit a thought from years ago:  “diabetes isn’t a perfect math where you can just solve for X.  Usually, we’re solving for ‘why.‘ And part of that equation is acknowledging, and appreciating, the sum of our community and what we document, every day.”

 

 

* this phrase has always grossed me out – “throwing up my hands” – because it’s hard not to picture someone throwing up their hands, vomit-style.  

Ten Things About Things.

I do really hate those “Ten Things About Things” sort of posts, but in this case, I’ve screwed it up even more by intending to write a list of ten things, then realized I only included nine things.

Whoops.

This spring will mark eleven years of sharing my diabetes story on the Internet, and over the course of the last decade plus, there’s been a steep learning curve. Here are ten … um, nine things I’ve learned about diabetes and social media.

I wish one of those things had been to learn to count, but I’ll work on that.

Looking Back: Of Cocktails and Community.

Today, after a lovely morning at the dentist (once again fixing this issue), I’m recovering from a half-droopy novocained face and, as a result, am looking back at a post from 2013 about search engine optimization, diabetes, and cocktails … sort of.

* * *

“So what you should do is see what people are searching for and then carefully tailor your posts to draw in those searches. Pick the search engine terms that there isn’t a high competition for, giving you an advantage in Google’s search algorithm.”

The example he used was pretty simple: “10 Best Cocktails for People with Diabetes”

In a discussion during the European Bloggers Summit in Barcelona (running alongside EASD), a search engine optimization expert gave a presentation about seeding blog posts with keywords in order to cast a greater net for readership. The SEO strategist was helpful, and had wonderful advice for people who were churning out content to get it read, but my body had a tangible reaction to this kind of advice. I felt myself prickling with frustration because is this really what people are writing for? Page views?

No freaking way. Not in this community.

So the top ten best cocktails for people with diabetes? Fucking sure. Let’s do this, social media-style:

  1. The #DSMA: Take 140 characters, a hashtag, and equal parts honesty and humor and mix them thoroughly in Twitter. Tastes best on Wednesday nights at 9 pm EST.
  2. The Blogosphere: Start with a URL or a Feedreader and slap it into the search bar on your mobile device, tablet, or computer, or Google “diabetes blogs” for a list of ingredients. Mix reading these blogs throughout your day for a boost in diabetes empowerment and community.
  3. The Flaming YouTube: Search through YouTube for diabetes, or “diabetes math,” or “breaking up with diabetes,” or “changing the song on my Animas Ping” and you’ll find a slew of video combinations to add to your playlist. (Title the playlist “Cocktails for Diabetics” and you’ll probably get a lot of search returns, but you’ll also find people who want to be found.)
  4. The Instagrammed: Take your phone, photograph any ol’ diabetes bit or piece in your house, and mix with Instagram to create a frothy, fun mix of Dexcom graphs, race bibs, brave new infusion set sites, Halloween-candy-casually-pretending-to-be-hypo-treatment, and friends who understand.
  5. Facebook Your Face: Take your Facebook account and stir gently with groups, hashtags, and posts about diabetes. It may take a while for this mixture to fully set, but once it does, you’ll have a shot of community you can take in one sitting, or something you can sip on and scroll through for hours.
  6. The Friends for Life: Take one part people with diabetes, one part caregivers, one part educators, one part inspirational athletes, one part Disney World, one part green bracelets, and a billion parts love and throw into a salad shooter and spray that stuff everywhere because in-person diabetes meet-ups and conferences will break your heart and mend it within the course of a week.
  7. The Group Text: No specific ingredients, but a drink best shared with many. And at 3 am.
  8. The Call Me: Best served when low, because a phone call to another PWD who understands is the best way to keep from over-treating.
  9. The Honest-Tea: Equal parts empathy and honesty, this cocktail is a must for people with diabetes who are looking for confirmation that they aren’t alone. It’s not about enabling, but empowering. (Goes really well with a side of Communi-Tea.)
  10. The Hug: Social media is great, but nothing is better than a hug between two people whose much-loved pancreases have taken an extended leave of absence. There is no set ‘best time’ for this cocktail – serve immediately and enjoy.

The one in the middle looks like pee, to me.

People in the diabetes community don’t communicate with one another for page views or Google search prowess. Of course, not everyone’s intentions are the same across the board, and there are people who immerse themselves in a community looking for things that aren’t as altruistic, but the majority of interaction in the DOC, from what I can see, is between people who need each other. That’s why so many of us started doing this, and it’s why so many of us continue.

Because when Google redoes its algorithm and there’s a new system for search engine optimization, when there’s an upheaval in what’s considered the “it” platform for social media, the song remains the same for the DOC. Diabetes, for many, isn’t just in your body but also resides full-time in your head, and managing emotions and support is as essential as insulin (and with a significantly lower copay). It’s not about where the discussions are taking place; it’s about the discussions that are taking place. So “drink” up!

Guest Post: Let’s Talk About It.

Diagnosed with type 1 at age 15, Kimberly Hislop has been living with diabetes for 18 years. She’s been an insulin pumper since 2009.  Kim is currently studying psychology with hopes of one day working with people who have been diagnosed with chronic illnesses. She’s been a guest speaker for pharmacists, nurse practitioners, and physician assistants, teaching about diabetic complications from a patient’s perspective.  Her writing can be found at Deniabetic, and today she’s rounding out my week of guest blogs with a really important topic:  diabetes complications and learning to live well despite their diagnosis.

*   *   *

Being diagnosed with diabetes is scary. We quickly learn that we can overcome our fear of needles as we do what is necessary to survive. In my opinion, the hardest fear to conquer is the fear of the unknown. As a person living with diabetes we hear the terrifying word “complication” and our thoughts run down the black hole of “what ifs.” This black hole can be depressing and paralyzing for some. I truly believe that the diabetic community needs to start talking about complications. Most of us can name them but that is where it ends. If we could understand what the complications were and how to treat them it could possibly lower the fear factor.

Seems simple enough, right? So why don’t we talk about it?

To me, people with diabetes are truly afraid of three complications:  retinopathy, amputation, and kidney disease. I have had to deal with all three of these. I think it is so important to talk about these for a few reasons. When you can find someone who has SURVIVED these complications it gives you hope. You can see that there is life after complications. Also there is treatment out there. When you diagnosis complications early, there is a possibility of reversing it or at least stopping the progression. It is not necessarily a “done deal.” We need to talk about these things so that we can learn to be an advocate for ourselves. If it is a new diagnosis, you may not know what treatment is out there or even feel that you can ask for a second opinion.

My first complication was neuropathy. It came on five years after my diabetes diagnosis, when I was 20 years old. I did not know anyone who had this complication. It was incredibly painful and debilitating. I spent six months in a wheelchair and had horrible side effects from the medication. I felt shame, guilt, and really misunderstood. Mostly, I felt alone. I followed what the doctors told me to to but like with most complications, they can’t tell you for certain that you are going to be alright. I became suicidal because I couldn’t handle living with the pain. I spent a few days in a treatment program and from there started talk therapy on a regular basis.

For me, when I am diagnosed with a complication my first reaction is to figure out what I need to do to treat it, if it is an option. I think it is overwhelming to deal with my emotions while dealing with going to doctors and figuring out treatment.  And after a complication diagnosis, I always wonder why. Why me? Why did this happen? What caused it? The problem with diabetes is that it is a self-managed disease. Sometimes the only answer I can come up with for the question “Why?” is “because of me.” I think of all the things I did wrong such as,

I didn’t test enough.
I didn’t count my carbs right.
I didn’t cover with enough insulin.
I skipped my shot.
I didn’t exercise enough.

The hardest complication to face was my chronic kidney disease. I did not want to talk to anyone about it. It took me a year before I made it public and really I was forced to when I realized that I needed to find a live donor for a kidney transplant. I did not want pity from anyone. I did not want anyone to ask me if I was ok because in truth, I was not. I did not have the energy to fake it for the sake of others. I also felt like it was my fault. If only I had taken care of myself during my college years, instead of living with an A1C of 19% for two years. I felt like maybe I didn’t deserve a new kidney.

I was also incredibly freaked out about having someone else’s organ inside of me. I was sure that I would feel different. I wouldn’t be myself anymore. I even had pictures taken professionally about a month before my transplant as a reminder of who I once was. My guilt and shame kept me from reaching out to others who were transplant recipients. When I would go to the doctor’s office it would be filled with people 20+ years older than me.

I felt alone.

I know I am not the only one. The problem is that we feel such guilt and shame that we don’t talk about it. I don’t want to talk about my kidney transplant because I know that people will assume that I didn’t take care of myself. I don’t want to share about my retinopathy because clearly I caused that myself. If you have ever felt this way, raise your hand. The truth of the matter is … diabetes is not your fault. There are some people who take the best care of themselves and they do not suffer from any complications, some take the best care and do. There are those that ignore their diabetes completely and yet are never diagnosed with a complication. Sometimes there is just no explanation for any of this.

It is so important for our community to talk about complications and the fears associated with them. Instead of feeling shame and guilt, we need to stand together. When you are diagnosed with a complication it is imperative that you connect with someone who has gone through it. It can take away some of the unknown fear.  Every time I have been diagnosed with a complication I have felt “this is the worst thing that has ever happened to me.” In the moment, that is what it feels like. But somehow, you survive. It takes hard work both mentally and physically.

We need to discuss the importance of mental healthcare in all of this. It is only natural to feel depressed when diagnosed with a complication. The fact is, you can’t take the best care of yourself if you are not feeling good about yourself.  We need to figure out how to take the stigma of “it’s my fault” if you are diagnosed with a complication.

Complications suck but there is a life after being diagnosed with a complication. So … raise your hand if you want to talk about it. Let’s get this conversation started.

*    *   *

:: raises hand ::  I have written before about my own experiences with diabetes-related complications, and I know that sharing that information was simultaneously terrifying but also empowering.  By talking about the thing I needed the most information about and the most support with out in the open, I was motivated to move past fear and step towards positive actions to improve my health.  If you are dealing with complications, or simply scared by the thought, please raise your voice.  You are not alone.  And with early detection, early intervention, and good mental health support, we can find a very good life regardless of the road we’re on.  Thanks for sharing your story, Kim.  It’s an important one to share.

 

Interview: Anna Norton on the Future of Diabetes Sisters.

Organizations that bring people touched by diabetes together have a special place in my heart, because peer-to-peer support checks that “whole person care” box on the mental diabetes management to do list.  The Diabetes Sisters organization is a group that brings women with type 1 and type 2 diabetes together in an environment that fosters open discussion, camaraderie, and learning.  Today I’m talking with Interim CEO Anna Norton, who is helping transition the organization into a new era.

*   *   *

Kerri:  Thanks for taking the time to talk today, Anna!  We’ve known one another a long time, and you’ve been part of the Diabetes Sisters organization for years.  Can you tell me a little bit about how you got involved with DS?

Anna Norton:  Thank you, Kerri, for taking time out to interview me! I initially became involved with DiabetesSisters in 2011, when I attended my first Weekend for Women Conference in Raleigh, NC. That was the first time I had ever experienced being in a room with 99 other women with diabetes. I never realized how much I needed their understanding and support until that weekend; before that, I just managed on my own. Following that event, I was asked to join the planning committee for future conferences. In 2012, Brandy asked me to join the DiabetesSisters’ staff full time as Operations Manager, where I oversaw the National PODS Meetup program (our monthly support group meetings), the Weekend for Women Conference Series, online contributors, and other programs. Over the last four years, I’ve gotten to know so many people with diabetes, so many “movers and shakers” in the diabetes community, including you!

Kerri:  What is your personal connection to diabetes?  How does your personal experience color your involvement with Diabetes Sisters?

Anna Norton:  I was diagnosed with type 1 diabetes in 1993, when I was 18 years old. Initially, I had a few years of okay management, followed by years of noncompliance, depression and poor medical care. Eventually, I faced the reality that diabetes was controlling me and holding me back. Once I realized that, I was able to make changes in my management, starting with finding a new endocrinologist and going on a pump. Then I fulfilled my personal dream of getting married and having a child, which so many people told me I would never be able to do.  It’s been 15 years since I “transformed” my diabetes care and I’ve never looked back. Over the years, I have met so many women through DiabetesSisters, all at different stages in their diabetes care. I see myself in so many of them: a younger version of myself struggling to figure out how diabetes plays a role in her future, a mom managing both diabetes and a young child, a professional figuring out how diabetes will affect her career. I am inspired by every woman I meet living with diabetes, thriving with it, each with her own story of success. It’s important to me to have these women in my life, to support and guide me, and in turn, for me to do the same for them.

Kerri:  With Brandy leaving the organization (and she will be missed!), how do you see yourself stepping up and taking charge of this amazing group?

Anna Norton:  Brandy really did an excellent job in building a strong foundation for DiabetesSisters and for that, we are grateful. Over the last three years, she and I teamed up to create more programming to serve our online population and train more women to lead our PODS Meetups – monthly support groups that meet in over 30 cities throughout the US, including an online meetup. Over the years, Brandy entrusted me with the care of DiabetesSisters on so many levels, all the moving parts became very familiar to me. When Brandy decided to step down, the Board of Directors asked me to step into the Interim CEO role and continue the work. In my new role, I have the opportunity to meet supporters and funders that have helped shape the success of DiabtesSisters, and I get to share our member stories with them, as well as represent their needs. It’s important our funders to know how much their support helps change lives.

Kerri:  What are you most excited about, as CEO?  What scares you the most?  And how can the DOC help as you transition?

Anna Norton: I am definitely excited about continuing on this great path, growing our programs and services, adding more topics to our webinars, and reaching as many women as we can. I’m excited about adding some services for underserved populations, such as African American and Hispanic women. I have a busy summer ahead of me, representing DiabetesSisters at various conferences. The biggest challenge, though, is our small staff, although we’ve had some key volunteers step up to plate to help out, which is fantastic! During this time, I’d love for the DOC to reach out to me, introduce themselves virtually or in-person, and learn more about how the organization can serve them or ways we can partner up to impact more lives. I’d love to see women in the DOC step up as leaders and create more PODS Meetup groups in their communities, share their stories with the community through our website blogs, and provide online support through their own blogs.

Kerri:  Will the PODS meetings still continue?  How about regional conferences?

Anna Norton:  Of course! We just completed a weekend Leadership Institute for our PODS Leaders, which focused on more training for them. This program is, by far, our largest in-person, serving over 1,200 women annually, with a balance of education and support once a month.

Our national Conference Series – Weekend for Women, along with the Partners’ Perspective Program – is still alive, although we took this year off to focus on the Leadership Institute. It’s always a challenge with limited funds, so we’ve tried to provide the best programming in 2015.

Kerri:  What’s next for Diabetes Sisters, and how can the DOC get involved?

Anna Norton:  Our future is bright – and I’m glad to be a part of it. This is a time of continued growth for DiabetesSisters, and for all diabetes-related organizations. There’s so much to learn, so many treatments to trial, so much support to be provided. The DOC can move mountains with its influence, and encourage their audience to learn more about DiabetesSisters, read our website (www.diabetessisters.org), subscribe to our e-newsletter, listen to our webinars, and most importantly, get the word out about how we are a one-of-a-kind organization focusing on the emotional and social well-being of all women living with all kinds of diabetes.

Kerri:  Where do you see Diabetes Sisters in six months?  A year?  Five years?

Anna Norton:  That’s a great question! I definitely see DiabetesSisters continuing on the path of growth. With a great Board of Directors leading, there’s no doubt that will happen. In the near future, we will continue to build upon the foundation that is set, growing existing programs, trialing new ones, listening to our members and providing for their needs. Over the course of the following years, I see great partnership being forged with other organizations, maximizing our potentials in the diabetes support world. Eventually, I envision DiabetesSisters as the go-to for women living with diabetes to learn more about every stage of life including the years of young adulthood, relationship, pregnancy, parenting, peri-menopause and beyond, advance duration, etc.

Thank you, Kerri, for allowing me this opportunity, for being a DiabetesSisters’ cheerleader and for giving so much of yourself to the organization. I am excited to expand my role in the DOC and contribute to the support of our community!

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