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Posts tagged ‘type 2 diabetes’

So Much of the Thanks.

On the eve of Thanksgiving, I’m thankful.

Thankful for two, daft gray cats who rotate around this house instigating trouble, but who happily curl up on the couch with us at night.   For job opportunities that fill my life with meaning.  For family and family.  For the husband who tolerates, with amazing patience, all of me.  For the all-in hugs that Birdy issues in the morning, with her hair a stratosphere-tickling tangle and feet shuffling, but her eyes wide open, ready to experience everything.

And I’m thankful for access to insulin.  As a person living with type 1 diabetes, I depend on insulin.  Without access to insulin, I would be dead.

But tomorrow, and every day, so many people who need insulin do not have access to it.  The global diabetes community needs our help, and Insulin for Life can serve as the compassionate conduit between those who can give and people with diabetes around the world who are in need.    You can donate through their website by clicking here.


Give yourself another reason to be thankful:  be thankful that you have the opportunity to save a life.

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.

Stigmatized Secrets.

I’ve spent the last few weeks keeping watch on the My Diabetes Secrets Tumblr account (a version of Diabetes PostSecret – more here) and these two submissions keep leaping out at me:

The submissions as stand-alone pieces make me feel like I’m trying to shove limitless emotions into a Ziploc bag, but what kills me is that these were submitted anonymously.  There’s still something about diabetes, and the fear and stigma associated with this disease and all its iterations, that keeps people from feeling empowered/supported enough to say this shit out loud.

This week, I received an email from some PR company professing that diabetes is a disease of numbers and control, and when lab work is “in range,” the disease essentially melts away into insignificance.

Oh yeah?

It’s high time for the psychosocial impact of diabetes to be acknowledged.  People living with diabetes aren’t ruled entirely by our pancreases … there’s a lot of heart thrown in there, too.

For more anonymous secrets, check out My Diabetes Secret.

What A Low Blood Sugar Feels Like.

What a low blood sugar feels likeAcross the board, a low blood sugar seems to be considered as anything under 70 mg/dL.  Revisiting the American Diabetes Association’s website this morning offers up a list of symptoms of low blood sugar, like:

  • Shakiness
  • Nervousness or anxiety
  • Sweating, chills and clamminess
  • Irritability or impatience
  • Confusion, including delirium
  • Rapid/fast heartbeat
  • Lightheadedness or dizziness
  • Hunger and nausea
  • Sleepiness
  • Blurred/impaired vision
  • Tingling or numbness in the lips or tongue
  • Headaches
  • Weakness or fatigue
  • Anger, stubbornness, or sadness
  • Lack of coordination
  • Nightmares or crying out during sleep
  • Seizures
  • Unconsciousness

(As with most diabetes-related lists on the Internet, the further down the list you read, the worse shit seems to get.)  The “what happens if a low blood sugar goes untreated” answer is short, and to the point:  “If left untreated, hypoglycemia may lead to a seizure or unconsciousness (passing out, a coma). In this case, someone else must take over.”

When my daughter hears my Dexcom beeping, she understands the difference between the alert signaling a high blood sugar and the alert signaling a low.  If the high alarm goes off, she doesn’t react, but if the low alarm goes off, she perks up immediately and asks me if I need a “glupose tab.”  The immediacy and seriousness of low blood sugars is noticed by my three year old because she’s seen me go from normal, functional Mom to confused, sweaty, and tangled-in-my-own-words Mom in a matter of minutes.

The symptoms of low blood sugars don’t just vary from PWD to PWD, but often vary within the PWD’s own lifetime.  When I was very small, my low blood sugar “tell” was when my mouth would go numb and my face felt like I’d had Novocaine hours earlier and it was just starting to wear off, with that tingly, prickly feeling.  Over the years, I’ve had a lot of lows with varying symptoms:

“My brain is fully functioning.  I know words.  I know sounds.  I know exactly what I need to do and what the number 42 means but my body has betrayed me and won’t move as I have asked, like I was a robot who had been over-oiled.” – Sad Robot

A video during which I went low.

“My mouth isn’t even mine.  It’s just this thing, this portal to shove giant sugar tablets into.  I can’t work up the saliva to chew, so the tab sits in my mouth until it starts to dissolve a little, and then my body remembers what to do with it.  ‘Chew the damn thing.’  Tragedy of a low – no saliva.  Nothing to help mince these tabs down into something useful.” – Bullets

“‘Thanks, and could I please have a small orange juice, without ice, as quickly as you can?  Thanks so much,’ I said to the host in one breath, hypoglycemia filling up all the space around my head like the Radiohead video for No Surprises.  A minute or two later, a glass of orange juice was on the table.  I drained it in a few gulps.” - Reduced to Rubble

“I remember my mom sitting on the kitchen floor with me, breaking graham crackers into smaller bites and putting them in my mouth, dinner burning in pans on the stove.  I remember my mom’s eyes being very wide but she wasn’t crying.  I remember a glass of juice.  I remember it was hard to chew because I was crying but I wasn’t sure why, and then there’s a sharp edit in my memory, where I don’t have any recollection of what happened next.”  – Memories

No two lows feel or look the same, but a few grams of carbohydrate (plus the willpower to wait) can swiftly save the day.  With quick recognition and treatment, lows pass as quickly as they come on (most of the time) but they are always in the back of my mind.  When it comes to diabetes concerns, the fear of hypoglycemia has been constant for the last twenty-seven years.  My purse is never (okay, rarely, but never without on purpose) without glucose tabs, and I’ve had the “this is glucagon, and here’s how to use it” conversation with more people than I can count.

What are your low blood sugar symptoms?

 

National Diabetes Awareness American Month Diabetes … Month?

It’s National Diabetes Month, according to the President.  And American Diabetes Month, according to the ADA.  It’s Press Release Inundation Month, according to people who work for companies looking to connect with the diabetes community.  But for people living with diabetes, November.  And it’s also our chance to raise more awareness for our health condition/disease/whatever you’d like to call it.

This month, I’ll be making an attempt to take a photo-per-day to highlight the regular ebb and flow of life with type 1 diabetes, and I’ll be (hoping to) follow this guide:

diabetes month photo a day

Diabetes is every day.  And for this year’s Diabetes Month, I’ll be working to remind people that we still need awareness, research, and funding towards a better quality of life and, eventually, our cure.

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 Friday Six: Poutine Edition.

I have some very useful, informative links to share today, but before I do, I have to admit:  I don’t like poutine.  It looks like discarded fries that someone fished out of a garbage can.  My husband loves the stuff and is trying to convince me that it’s a delicacy, but I’m not converting.  Being in Montreal this week for the Canadian Diabetes Association conference has shown me that my opinion on poutine goes against the grain, though, and I should keep quiet about my disdain (even if it rhymes).  I wish I liked it, though, because it’s found easily on the menus up here.  What’s not found?  American cheese.  (Carey, Wade, and Sandy:  If you’re reading this, you’ll be happy to know I did not order American cheese on this trip.  I’ve learned my lesson.)

Okay.  Links now.  And this Friday, I finally have an actual “six.”  –>

  1. There’s another TCOYD conference taking place in a few weeks, this time in the ABQ.  If you want to break bad with the TCOYD team, you can sign up here.
  2. The Big Blue Test is taking place now!  All you need to do to participate is check your blood sugar, exercise, check again, and then share the results.  “Each Big Blue Test entry you log between now and November 14th triggers a donation on your behalf to nonprofit groups that are providing life-saving supplies, services and education to people with diabetes in need.”
  3. The mySugr Junior app is ready for downloading, and this kid-friendly version of the Companion application is gorgeous.  I’m looking forward to taking it out for an extending “revisiting my childhood” spin in a week or two, but for now, just wanted to make you aware that it’s available in the US, and looks awesome.
  4. If you’re in the Boston area, you can catch two fantastic writers (and advocates) at the BBF [Boston Book Festival] Unbound: Writing About Health session taking place on October 19th (this Saturday).  “Cheryl Alkon (author of Balancing Pregnancy With Pre-Existing Diabetes) and Laurie Edwards (author of The Kingdom of the Sick) will offer strategies for those looking to begin telling their own medical stories, including: how to combine memoir and personal narrative with research; how to navigate issues of translation and accessibility in medical writing; and insights about the importance of social media, whether to self publish, and what happens after publication.”
  5. Also, there’s a study taking place about diabetes and romantic relationships.  Here are the details: “Announcing the ROAD Study (Relationships of Adults with Diabetes)!!  Researchers at Carnegie Mellon University are studying how young adults with type 1 diabetes navigate romantic relationships.  If you are involved in a romantic relationship (dating, living together, married), are between the ages of 18 and 30, and have type 1 diabetes, you are eligible to participate in this 30 to 40-minute phone interview.  Please email Dr. Vicki Helgeson at vh2e@andrew.cmu.edu for more information.”  I’m not involved with the study, but am helping to pass along the research information.
  6. And this post, I love, simply for the last request that we “be gentle.”  Thanks for sharing this, Meri.  (Almost called you “Merci.”  Which stands, as well.)

 

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