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Guest Post: Someone Who Understands.

Part of what drew me to the idea of creating a diabetes blog was the search for, and the hope of finding, people who understood.  Google was a dark abyss of bad news and depressing statistics; what I needed was to connect with others who were living life, with diabetes along for the ride.  That same connection still feels necessary, now almost a decade later.  This morning, fellow PWD Heather Gabel has offered to guest post about the search for and the becoming of Someone Who Understands.

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Holidays are meant to bring family, friends, and loved ones together. It is the nature of holidays to feel warm feelings, give hugs and thanks, and to eat all the treats you can.

I would be fibbing if I said the ‘Holiday Spirit’ didn’t consume me each year. I start preparing for December 25th on November 28th. The giving and the hugging and the loving fills me with a sort of joy that I don’t find as readily accessible in other times of the year.  However, ever since diagnosis, which for me was at 11, there has always been something missing. One piece of the puzzle that until last year I could not seem to find.

Pardon this cheesy attempt to convey the overall sentiment, but to feel complete during the holidays, all I want for Christmas is … Someone Who Understands.

I want someone who knows what it is like to wake up in the morning on Christmas and do diabetes things before joining the family. I want to talk about what it feels like to miss those moments of laughter coming from where you would have been if diabetes didn’t take those minutes away.  I want someone who has been through the “Should you be eating that?” and that saddened glare when mom sees that you have stolen one of Santa’s cookies.

Connecting with someone who understands is so powerful during the holidays, when what makes you different feels isolating and you really get the FOMO (fear of missing out) going on.

Last year I stumbled upon something that filled that gap. What was it you ask? Why, the DOC [Diabetes Online Community] of course.

This outstanding community of individuals, via Twitter, Facebook, blogs, TuDiabetes, Glu, Children with Diabetes, or other social networking site, has connected me to a SWU (Someone Who Understands). And, to even more capture the holiday spirit,  the DOC allows me to be someone else’s SWU.

The DOC is a birthplace of friendship. Year after year, you get to know your DOC friends more and more.

I was talking with Mike Lawson about this recently and he described something I hadn’t really addressed before. He said that before he started going to conferences and meet ups, it felt like he had two distinct groups of ‘friends’. His “friend-friends” being those he physically spent time with and his “online-friends” being those in the DOC. When he started going to conferences and meeting face to face with the people he knew so well online, the groups began to merge. The lines between them became fuzzy and overlapping.

As a PWD (person with diabetes), and a PWD who has now attended four diabetes conferences, I couldn’t agree with Mike Lawson more.

Meeting people you know well through online platforms feels strange and almost backwards. You know their secrets, their fears, their hopes and dreams, and then you meet them and begin small talk because you don’t know much about their home life, their job, responsibilities, their family.

Relationships develop online, but they seal in person.

As a PWD who is 23, the holiday gap is not entirely filled by the DOC, and this is why: finding a Someone Who Understands who is close to my age is incredibly difficult online.

I don’t always feel a need to talk to someone in my exact same boat, usually if you have diabetes that is sharing waters and thus close enough. But there are times when I want to connect with a PWD who is wondering what to do after college, how to land a entry level job that offers good enough insurance, how to wear a bikini with both CGM and pump sites hooked in, etc.

There are programs out there bringing together 20-somethings with diabetes. There is College Diabetes Network, Friends For Life, Students with Diabetes, Facebook groups such as Females w/ Diabetes, Diabesties, etc. There are mentor programs like Insulliance via Beta Connect and fundraising young adult groups such as JDRF YLC chapters. BUT, there still seems to be something lacking.

It is a feeling of solidarity.  Where is a core group of PWD’s going through life post college?  Where do we meet up? How do we stay in contact?  I am certain that there are groups of friends with diabetes in the 20 something range who would completely disagree with me. You interact constantly and feel supported by your peers. That is wonderful! Where do I sign up?

If this is your circumstance, I urge you to grow your group.  Find ways to connect with others who are blogging and tweeting and Facebooking. Make a blog, yourself, and invite others your age to read it.  (A great example of someone who recently started this process is Walt. He is a 20-something who has yet to meet another PWD in person. He couldn’t find the voice, so he started it.)

During this holiday season, the DOC could become greater, more powerful. We could reach out, and welcome floaters and lurkers and plan to meet or attend the same conferences. We could inspire them to begin sharing their vital voice.  It could be a merrier year in the DOC, if we collaborated and sought out a 20-something group of advocates, writers, athletes, innovators, students, shakers, and makers.

I feel certain that there is complete openness for something like this to develop within the DOC. We just have to begin moving in that direction.  (Hey veterans, any ideas of how to begin?)

If you are a 20-something and write a blog, leave your URL in a comment below and share if you are interested in forming a solidarity group. How can we better support each other?  Moving forward through life’s many stages would feel more safe if we could all experience it together.

If you are interested in reading some diabetes blog’s by 20 somethings:

Walt’s Blog
Courtney’s Blog
Heather’s Blog
Elizabeth’s Blog
Jen’s Blog

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After graduating from UC Berkeley with a degree in East Asian religion and philosophy, Heather Gabel joined the Diabetes Hands Foundation team in fall 2012. While working there, she has become greatly involved in the diabetes community, both online and off. Heather founded an organization called Beta Connect that inspires positive language practices in people with diabetes through the implementation of mentorship programs at hospitals and healthcare centers.

And please, if you’re a 20something blogger living with diabetes and you want to find, or be, that Someone Who Understands, please leave a link to your blog in the comments.  Make the search easier!

HCPs and the DOC.

My type 1 diabetes is managed on a day-to-day basis by me.  I do my blood sugar checks, I make insulin decisions that correlate with the food I’m eating or the exercise I’m doing.  I have decided to make an insulin pump, a glucose meter, and a continuous glucose monitor part of my diabetes technology arsenal.

My endocrinologist helps manage my diabetes from a distance, but her input is important in the decision-making process I fumble through every day.  Her recommendations, education, and advice color my choices in debating things like Symlin, having children, clinical trials, etc.  She prescribes the drugs and devices I need/want/should have.  My endocrinologist went to medical school and, in any given week, sees dozens of patients living with diabetes (all types).  She’s (sorry for going full Rhode Island’er on you here) wicked smart.  And she helps put her more global perspective on diabetes in play with my myopic view of this disease, giving me a slate of smart options to think about.

Last night’s #dsma chat was a tough one because it seemed to inadvertently set up healthcare professionals as the “bad guys” and people with diabetes as the “wicked smart” ones.

Whoa, what?  I’d like to assume (and I think correctly so) that the question was more poorly phrased than poorly intentioned.  The discussion should have been about gaps between HCP and PWD communication and about building better HCP/patient relationships, not pitting one side against the other.  But, like it or not, it did open up a heated discussion with Tweets and emails and texts flying.  Paraphrased examples:

“They doesn’t listen to me.” 
“They dismiss the things that I say.”
” They judge me.”
“They don’t care about me.”
“I know more about diabetes than they do.”

Funny thing is, I’ve heard doctors and patients ALIKE say these same phrases.

I have had my share of excellent doctors in my life.  Compassionate, smart, reasonable healthcare professionals who have helped me maintain good health.  Ones who have encouraged my patient empowerment and who have celebrated with me the health I’ve achieved and have maintained.  I’ve also had my share of crummy doctors – apathetic, arrogant, uneducated healthcare professionals who didn’t do anything to move the needle on my well-being (except to potentially push it back).  It’s frustrating as fuck to be under the care of a medical professional who doesn’t seem to care, or who make you question the depth of their diabetes knowledge.

And I’ve been an excellent patient a lot of the time.  I’ve been on time for my appointments and armed with the data my doctor needs to help me make decisions.  I’ve had lists of questions and expectations, and my current medication list handy, and my goals outlined.  I’ve also been a crummy patient plenty of times, one who fuddles through the creation a logbook in the waiting room, with a chip on my shoulder already about the A1C result I know won’t be in-range, frustrated by the fact that my insurance company only covers therapies I don’t like, hating on diabetes and the fact that it makes me sit in more doctor’s office’s than I’d like, and arrogantly viewing my perspectives and needs on diabetes as the only one that’s “right” in that moment.

People are people, doctors and patients alike.  And, like all people, there are good days and bad days and good people and bad people and all the in-between people and moments not carefully structured in this sentence but you know what I mean.

The doctor/patient relationship is a delicate one, and isn’t easily housed by 140 characters, or within the confines of one disease state.  What seems to be missing, from my admittedly oscillating perspective, is respect for all parties on all sides.  I need to be more respectful of my doctor’s time, education, and opinion, and they need to be respectful of the exact same things for me.  One doctor doesn’t make or break my perspectives on how healthcare professionals conduct themselves, just as one patient doesn’t speak for us all.  I am the expert on MY own diabetes care, but there is no way I can claim to be the expert (or even remotely knowledgeable) on all things diabetes.  I have made many mistakes along the way, both in how I manage my diabetes and how I interact with my medical team, but I have to allow myself the chance to learn from those mistakes.  Same goes for my doctor.

This is life with diabetes.  My healthcare team AND I work together on my health.  There’s both an “I” and a “team” in “my diabetes,” and that’s the way I like it.

Photo-A-Day: Past.

Three months after I was diagnosed with type 1 diabetes, I went to my first sleep over birthday party.  My friend Jill was turning seven, and even though my pancreas had just gone on its permanent sabbatical, I was still able to go to the birthday party. (Thanks to my mother, who drove over and spent a few hours hanging out with Jill’s mom, then tested me and dosed my insulin for dinner, then checked me again before she drove home, then went home and most likely didn’t sleep a wink only to return at 6 am and check my blood sugar again.  At the time, I didn’t realize how scary that must have been for my mom, but she knew how important it was for me to have normal childhood experiences, even if she became an insomniac by default.)

I’m thankful for how my diabetes was handled in the past.  It helped shape how I handled my diabetes in the future.

I’m slightly less thankful for my fashion choices.

[my photo-a-day guide is here]

Of Cocktails and Community.

“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!

The People in the Computer.

Who are the people in your computer?  (In your computer … in your com-puuuuuter …)  For me, a whole community of people with diabetes live just a click away.

Going Solo.

Seven weeks is a long time.

It’s a lot of garbage days (I hate, hate taking out the garbage, especially since we have a crew of vindictive raccoons who have made it their agenda to bust into the garbage cans of everyone on our street, spreading trash all over the place and laughing maniacally whilst wearing hats).  Seven weeks is a lot of grocery store visits and pharmacy trips.  It’s a ton of bills.  Seven weeks is so long that your brain turns to inoperable mush.

Chris came home yesterday, after being away for seven weeks on a film shoot.  I don’t discuss much about his job here because it’s his news to share, but for the last two months, it has been hard not to discuss his absence, since it was affecting everything about my life.  Normally, our respective business trips are short.  For me, being away for a full week is a tremendously long time, and that is an anomaly.  For Chris, his travel jaunts are less frequent but usually longer, sometimes dipping into the eight – ten day away range.  This is something we’ve learned to handle, as a family.

But seven weeks?  Eff that.

Seven weeks is a long time to spend thinking about single parents and to build up even more respect for them, as the experience redefined “challenging” for me.  And I only experienced simulated single-parenting, my husband away but with a timeline for return.  It was while he was gone that I revisited the post-pregnancy feeling of not knowing whose needs to tend to first:  mine, or my daughter’s?

Unless I was away for work, I went to sleep every night with Birdy sharing a bed with me.  (Which was fine, except for the nights when she had a nightmare and would wake us both up, hollering about “the lemons are watching me!!” or the mornings when I’d wake up with the help of her tiny hands prying open my eyelids.  “Good morning, Mawm!”)  Every morning kicked off with a Birdy focus, unlike regular mornings, where the first thing I do is test my blood sugar and then go retrieve the kid, knowing I have Chris as back-up.  Good diabetes habits that I have forced (and then enjoyed) for the last year or so went a bit pfffft as Birdy became the focus and I was flying solo.

“But your health needs to come first, so that you can best care for your daughter.”

Shut up;  I tried.  Everything was a circus.  For five of the weeks of Chris’s trip, I was finishing up final edits on a book I’m writing (submitted to the publisher two weeks ago – more on that later!), which meant that once Birdzone was in the sleepzone, I was up until all hours, combing through pages to tweak content.  And the last two weeks of Chris’s trip included two trips for work, leaving my daughter under the capable (and so appreciated) watch of my mother.  “A good night’s sleep” was a laughable goal.  “Exercise” became either chasing my daughter while she rode her bike at a breakneck speed or brief stints on the ellipmachine in the basement (because going to the gym/for a run while she was awake wasn’t an option, and most times I was so spent that I couldn’t eek out much in terms of exercise).  Emails went unanswered.  Deadlines were pushed.  Pigtails were installed at uneven angles.  Bananas ripened and rotted due to neglect.

(But we always had gluten-free banana bread baking, because that has become a favorite past-time of the Bird’s.  So there was that.)

Diabetes became like a second kid, only one I don’t want to snuggle with.  It needs to be walked.  Fed.  Checked on and monitored.  It’s a needy little sucker.  When it whined and needed tending to, I had to explain to my daughter why we needed to wait a few minutes.

“Do you have whoa bwoodsugar?  Your Dexcom is howering [hollering].” Birdy asked me when I was popping glucose tabs into my mouth, car keys in my hand.

The term “whoa bwoodsugar” took on a whole new meaning when I was solely responsible for my daughter.  Being a parenting soloist for seven weeks made diabetes management pretty freaking tricky.  I’m thankful Chris is home now, because for the duration of his absence, my target blood sugar went from 150 mg/dL instead of 100 mg/dL, in efforts to avoid hypoglycemia while I was the only adult in the house.  My meter average followed suit, which was a frustrating increase after so many months in a comfortable zone, but I knew it was a temporary fix.  My job was/remains to take good care of my kid, and that’s hard for me to accomplish when I’m low as all hell.  It was an enlightening (read:  WTF) experience, and one that, for all of its challenges, I’m glad I proved to myself that I could handle, thanks in large part to friends and family, and the blessings of a flexible job.

But, for a dozen different reasons, I’m so glad Chris is back.  Because, at the end of the day, he’s the one who gave those hats to the raccoons in the first place, so he should be the one doing battle with them.

 

How to Have Sex with an Insulin Pump.

Don’t.  For the love of god, do not have sex with your insulin pump.  It’s an expensive insulin delivery device, and it’s not to be trifled with.

But if the Google search you made was to find out how to have sex with the insulin pump in the vicinity, then that’s a whole different take.  Because that topic comes up a lot in the women’s discussion groups that I’ve taken part in, and it was a particularly hot topic at the Diabetes Sisters conference earlier this month.  The same sorts of questions come up every time, from new pumpers and people considering adding a diabetes device to their management plan:

“How do you deal with wearing a device when you’re trying to be, like, naked?”
“Do you disconnect during intimacy?”
“Does it get in the way, physically?”
“Does it get in the way, emotionally?”

(And, for the record, I love that these questions get asked.  And the best part is, they’re asked in rooms full of women who have either met for the first time that day or haven’t even formally met yet.  Diabetes, for all its chaos, does bring a certain level of discussion comfort and camaraderie, and I love that.  Love.)

Insulin pump = sexy time?

“How do you deal with wearing a device when you’re trying to be, like, naked?”

This was a tough hurdle for me, because I went so long without wearing any devices.  Diagnosed as a kid and not pumping until 2004 or CGM’ing until 2006, I spent a big part of my diabetes life without any external “symptoms,” so to speak.  Initially, I needed to be comfortable with my device(s) before I could expect anyone else to be, and that did take some time.  But I like the “no big deal” philosophy to these moments.  If I give the impression that these devices aren’t a big deal and should be taken as a small part of the bigger whole, then I hope my partner will follow suit.  For the most part, wearing a pump and a CGM isn’t something I feel self-conscious about, but being honest, there are days when I want to rip them both off and throw them across the room in pursuit of feeling truly ‘naked.’  I don’t like having these artificial bits and pieces stuck to me all the time, but I try to keep tabs on the bigger picture, which is my overall health.  Sounds cheesy, but it’s the truth.

“Do you disconnect during intimacy?”

Personally, I do.  I don’t like having anything connected to me during those moments, because it becomes a distraction.  I like feeling like diabetes is a back burner issue in the bedroom, or at least as much of one as I manage.  When I first started pumping, disconnecting felt awkward because I didn’t know how to make it feel sexy (“Oh, let me just slip out of my medical device and into something more comfortable,” never had the right tone to it.) and it took me out of the mood a little bit.  But once I was comfortable pumping, in all capacities, I was comfortable with this part, too.  Disconnecting is kind of like my “mating call” now, which is a bit strange but also ‘no big deal.’

“Does it get in the way, physically?

Not for me, because I’m already disconnecting.  And I take care to keep my devices as out-of-the-way as I can manage, keeping infusion sets on the back of my hip and sensors on my thighs, leaving my abdomen feeling “normal.”  Sometimes it gets in the way in the initial moments, like when it’s being disconnected and I’m trying to figure out where to stash it for the time being (bedside table? under a pillow? on the floor? It’s a tough device, but I’m not willing to throw a six thousand dollar medical device onto the floor with reckless abandon.), but for the most part, once it’s disconnected, I forget about it.  The trouble is sometimes remembering to reconnect afterwards.  Some women set the alarm on their pump to remind them, but I’m not even close to that organized.  Others set reminders on their phone.  I’ve never gone to bed without reconnecting, so I’m going to pretend that I will always remember?

“Does it get in the way, emotionally?”

Yes, at least enough so that I can’t outright say no.  Can’t lie – not being able to be completely naked (sans pump site and CGM transmitter, for me) is a weird feeling, and I always feel like I need to give Chris a head’s up as to where my devices are currently connected.  “Be careful of the site on my right arm,” or “My sensor is on the left,” sort of directions feel anti-intimacy, for me.  But that’s where the relationship with my husband comes into play – he makes me feel like diabetes is something we can openly discuss, so it makes device topography easier to disclose, knowing he’s not creeped out by this stuff.  The emotions about this sort of thing ebb and flow, just like emotions about diabetes in general, but it’s most important for me to be able to talk about it with Chris.  Being part of a team that allows for the emotional highs and lows helps keep devices from getting in the way, mentally.

You can have sex with your insulin pump … by your side.  Or on the bedside table.  Intimacy with diabetes requires a little forethought in addition to the foreplay (terrible pun), but it can be done.  Just don’t shag your actual pump, or you could end up with a different set of issues entirely.

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