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Posts tagged ‘DOC’

Voices Carry.

There’s no generation assigned glibly to me – not a millenial, not a Gen X’er, but I seem to be an “xenial,” according to this new write-up.  I identify completely with “experienced an analogue childhood and a digital adulthood.”

My journaling has gone from paper journals to blog posts, too.  I used to keep volumes of chaotic ramblings as a kid, before switching over to blogging.  I’ve written over 2,760 entries on Six Until Me, chronicling my diabetes since May of 2005.  And recently, I’ve wondered what keeps this pen to paper (or, more accurately, these hands to keyboard).  What’s the point in sharing my story?

Even my diabetes has made a transition from analogue to digital.  When I first came home from the hospital after my type 1 diagnosis, my mom used a urinalysis kit for a month before gaining access to a glucose meter.  (Note:  Glucose meters were available, but we didn’t have one for four weeks)  My glucose meter was an Accu-Chek Brick (not the real name but could very well have been) and my lancing device was this wretched thing.

Glucose results were not stored in my meter but instead were logged by hand.  I didn’t count carbs; I followed the ADA’s exchange system.  Two starches, a protein, a fat, a fruit … and a headache with each meal.  My insulins were NPH and Regular and yes, the bottles had little cows and piggies on the side.

Thirty years later, the touchscreen insulin pump on my hip delivers fast-acting insulin without uncapping a syringe.  A continuous glucose monitor offers up glucose results every five minutes.  My meters download and upload to the cloud consistently and even my prescriptions can be refilled using an automated service.  My diabetes has gone entirely digital.

… except.

That it remains diabetes.  All of the technology is truly amazing and life-changing, but this body still doesn’t make any insulin.  Still experiences blood sugars above 200 mg/dL and under 60 mg/dL.  Exercise is still an exercise in planning and perseverance.  Still doesn’t process food physically the way that people without diabetes do.  Mentally doesn’t process food the normal way, either.  Or the concept of longevity.

Diabetes is a raging back burner that is on all the time, despite going digital, because it is still NOT CURED.

And that’s what keeps me sharing my story, and sharing stories from other PWD:  it’s still not over.  We’re surviving and thriving and kicking a tremendous amount of ass but we’re still doing this with diabetes dragged behind us, a weight that is light as a feather some days and heavy as an A380 on others.

Our voices carry.  Sharing your personal diabetes experience helps it reach the ears and eyes of someone who needs that affirmation that they aren’t alone.  Stories change over time, too; and diabetes has been a part of all of those experiences.  When I first started writing, it was about college and dating and finding a job.  Then it became planning a wedding and cultivating a career.  Now, twelve years later, it’s a lot about traveling, expanding my writing, and raising my children.  My life has changed, is changing, and sharing these experiences shows one small version of what life with diabetes might look like.

That yeah, it’s diabetes and it’s not over.  But my life is also not over.

So cheers to you, all of you who are sharing all the triumph and chaos that comes with chronic illness.  Our collective cadre of storytellers – the ones who write about incredible feats of strength and conditioning their bodies.  The ones who write about creating life.  The ones who share the mental health perspectives.  The ones who influence policy.  The ones who talk offer a moment of “me, too.”

The ones who change minds.

The ones who change hearts.

We keep going because we don’t have a choice to leave diabetes behind.  But we do have a choice to bring hope forward.

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.

 

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