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Posts from the ‘Diabetes Complications’ Category

Spare a Rose.

They’re so often a symbol of love and romantic relationships, but lovely as they are, roses wilt within a week or two, and eventually end up discarded.

Five dollars per rose, sixty dollars for a dozen. But the cost of those roses can provide life-sustaining insulin for a child with diabetes for an entire year.

Through the Spare a Rose, Save a Child campaign (February 1 – 14th), as a community we can raise awareness and donations for Life for a Child, an International Diabetes Federation program which provides life-saving diabetes supplies, medication, and education that children in developing countries need to stay alive.

Spare a Rose, Save a Child is simple: buy one less rose this Valentine’s Day and donate the value of that flower to children with diabetes. Your loved one at home still gets flowers and you both show some love to children around the world who need it.

One rose, one month of life. A dozen roses, a year of life for a child with diabetes.

Life for a Child









To learn more about the campaign, please visit SpareARose.org .  For specifics on how we can work together to make the biggest difference possible in the next two weeks, download this one-sheet.  You can grab a rose image from the image list, or the embeddable donation form that goes directly to IDF.  You can even download a “thank you” card for your loved one, explaining why their bouquet may be a rose short this year … or might be missing entirely.

We, as a community, often talk about helping one another and trying to make a difference for people with diabetes.  Let’s see how many lives we can change – how many we can save – through this year’s efforts.

Thanks for your participation, your support, and your love for our global community.

How Real Do You Want It?

Over the last few weeks, I’ve been watching the articles about Lisa Bonchek Adams circle, ranging from the New York Times opinion piece by Bill Keller to the one written by Emma Keller (his wife) for The Guardian (which has been removed from The Guardian site but lives on in the archives), to the response piece written by Brian Loew at The Healthcare Blog and analysis by Susannah Fox on the Pew Research Center Fact Tank blog.

(That’s a lot of links in one paragraph.  I’ll wait while you click.  And please note that none of those links go to any dancing gerbil .gifs.   But this does.)

Lots of discussion about a patient who is sharing raw and unfiltered details of her experiences with cancer through social media venues.  For better or for worse, this is the new scrutiny of health on the net, and of real life chronicled on the Internet.

“Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? … Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?” – Emma Keller

For me, chronicling my experiences with diabetes, it’s not for the “outsiders” who are looking in; it’s for the people who share that same condition, same disease, same struggle and who learn, thrive, and persevere through the power of common community and understanding.  Readers may have the option to “turn away,” but for those who live with chronic illness, we have no choice but to look directly into it.

Is there a right way to deal with illness?  A wrong way?  How real do you want it?

 

I learned about living with type 1 diabetes, and the “forever” journey that it is, through other people who had it.  Blogging wasn’t the first time I came into contact with other people living with type 1 diabetes.  Community came through the Clara Barton Camp in North Oxford, MA, where every camper had type 1 diabetes and almost every staff member does, too.  But there was a lonely, isolating gray area between aging out of camp and the coming-of-age of the Internet where diabetes was difficult for me.  Being a teenager, and then becoming an adult, was a tough transition, and even though I had a good support system through my family, friends, and medical team, I was lost in a sea of people who didn’t understand how light diabetes could feel on some days and how heavy it was on others.

Some people are uncomfortable with the idea of sharing so much private, personal health information on the Internet.  Hell, I totally understand that sentiment, as I was fumbling through Facebook yesterday trying to figure out how to delete people I hadn’t interacted with in years.  It’s not a flippant decision, the one to advocate for your own health and to share your story.  Scrape past the hesitation and the fear, however, and you’ll find people who are empowered by sharing, and lifted up by a community that has intrinsic knowledge of the places that hurt the most.

Over the last few years, I haven’t felt the “diabetes won’t stop me!” mentality I unwittingly held close for the first two and a half decades with this disease.  Though my health is still good and I am grateful, I’m seeing the emotional and physical manifestation of years with type 1 diabetes in sometimes small, and other times enormous, ways.  Patients with diabetes are writing about climbing mountains and running marathons and giving birth, but we’re also writing about complications like depression, eye disease, and eating disorders.  Even if it makes you feel uncomfortable, it’s real.

Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet.  While it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.

To quote Morgan Gleason, the fifteen year old who contracted meningitis while getting an infusion for an autoimmune condition:  “I am the patient.  I need to be heard.”

Half a Juice Box.

Turn on the light.

Fall back asleep.

Press the button on the CGM to make it stop BEEP!ing.

Fall back asleep.

Unzip the meter case and take out my glucose meter.

Lapse back into sleep again; was it sleep or was I passed out and what’s the difference when it’s 4 am and your blood sugar is under 40 mg/dL?

Opting for a juice box instead of the open jar of glucose tabs on my bedside table, I fumbled with the straw and once it hit the foil-covered mark, I drank as though my life depended on it.  Because it felt, in that moment, like it did.

I was 98% sure I would be completely fine in a few minutes, with no lasting effect of the severe low except maybe a hypoglycemia hangover.  But until the juice hit my system and my brain stopped panicking, the remaining 2% of doubt invaded every bit of me.

“I wasn’t afraid I was going to die,” I told Chris, explaining the next morning why I was so tired.  “It was more like I was really aware of how close I was to a dangerous physical state, and I needed to make sure I didn’t cross the threshold, whatever that might be.”

“I wish I had heard the alarm.  We need to do something about that – you need to keep it in a glass even when I’m home, so I can hear it when you don’t.  I need to be able to hear it, too,” he said, giving my shoulders a squeeze.

“Yeah, but what’s weird is that all I could think about, as I was waiting to come up and feeling pretty awful, I kept debating whether or not to drink the rest of the juice box instead of just drinking half.  I wanted to drink the whole thing, and then fifteen other juice boxes and maybe a sandwich, for good measure.  But instead, I was sweating and shaking and confused and at the bottom of the well, you know?  And the only moment of clarity I had was limiting myself to half of a juice box, knowing it would bring me up just enough and not too much.”

Having the first half saves my life, and having the wherewithal to not drink the second half saves me high blood sugars when I wake up.  It’s a humbling moment, realizing what hangs in the balance of half a juice box.

Macular Edema and Pac-Man.

I had been sitting in the darkened waiting room where people sit patiently, waiting for the dilation drops to take effect on their eyeballs.  The room is quiet and dim, with a television set at the front and chairs for people to ease into and watch the DVD menu screen (it was for a Discovery channel documentary about deep sea life – we watched the DVD menu load and reload a dozen different times, until I couldn’t take it anymore and asked a passing receptionist for help finding the remote).  Most people wait alone, holding their jackets and scarves and not making much small talk.  The folks who don’t wait alone are those who need assistance due to compromised vision, or other health issues that make movement difficult.  It scared me to see those people who, for whatever host of variables, were dealing with eye issues.

Dilated diabetic eyeball.  Oh yeah, this eyeball has its very own diabetes.

I thought about my daughter’s face, grateful it was clear in my mind and through my eyes.

For as long as I can remember, Joslin never scared me.  But the eye clinic always did, because it seemed like once you were a patient there, you are never released.

My eye doctor came out to retrieve me, and we briefly discussed my visit a few months ago, where the macular edema was diagnosed.  He pulled up my scans from the summer on my computer.  When I first saw those scans of my swollen, lipid-dotted retina, it reminded me of Pac-Man.  Or a  bunch of white Christmas lights along a gray, licorice-esque rope.   If it hadn’t been my diseased retina, it would have been almost pretty.

“That’s the scan from the summer, and this is the one from now,” my eye doctor said, pulling up the scans taken a few minutes earlier.  It looked as though Pac-Man came through to gobble up the majority of the dots.

“That one there?  The big one?”  He pointed to the screen, edging his fingertip against a larger, round smudge on my retinal scan, then pulled up the correlating scan from over the summer.  “That’s what it used to look like.  And now it’s still there, but much smaller.  I’m hoping to see it shrink more, but we can’t ever be too sure.”

The swelling is very minimal, but still there.  The lipid deposits are also still there, but fewer in number and smaller in size.  “Is this better?  It’s not gone, but better, right?”

“It’s better.  This is encouraging progress, but it could go either way in the future, so I still want to monitor it closely.”

I remembered what the technician had said before putting the drops in my eyes – “Your doctor is really good.  He knows exactly what to look for and how to react to it.  You are in good hands.  But he’s kind of all business.”

The eye doctor turned his chair around to face the computer again.  “I do think we can ease back on the scheduling, and do every six months instead of three,” he said.  “You’re off the immediate ‘watch list.’  Let’s schedule another exam for June, and in the meantime, keep doing what you’re doing.”

I was released to the too-bright regular waiting room, where Chris was sitting and waiting to drive us both home.

And I felt relieved, relieved, relieved and even more determined, determined, determined.

Talking About Diabetes Burnout.

Diabetes is every day, but burnout doesn’t have to be.

 

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.

Filling Back Up.

It whispered in my ear two January’s ago, when a low blood sugar came too close to becoming terrifying as I felt the whoosh of that bullet go by. I’d never felt anything like that before, that aftermath of fear and numbness.  Then I marked twenty six years with type 1 diabetes, and I just wanted to outrun this disease, to stay ahead of it, to pretend that it can’t ever possibly catch me.

Then there was this weird feeling, one I’ve never felt before.  It wasn’t depression, I don’t think, because it didn’t feel … I don’t know … like anything I’d ever read about or been warned about by my doctor.  I didn’t feel uncontrollably sad, and I didn’t have thoughts that would have concerned my family.

There was this emptiness, though.  And I can’t put my finger on where it came from or what its role was in my life.  Not an all-consuming feeling, but it did strike me at the oddest times, like during a conference when I was hoping to be more social, or during a movie that was supposed to make me laugh, or like when I would be in the car by myself and pull into the driveway of my house, and I’d feel lost.  And empty.   Coming into the house and seeing my happy daughter and my husband filled me back up, but for those brief moments before opening the car door and letting the sounds from outside come rushing in, the quiet was overwhelming.  I’m normally a happy person – quick to laugh, and happy to be surrounded by people – but I suddenly wanted to be alone, only being alone made me feel better, for a few minutes, then ultimately worse.

I talked with some people, including my husband and my closest friends, trying to understand why I felt this way and how to keep the feelings from becoming everyday.  It wasn’t all diabetes-related, but there was something about having had this disease for twenty-six years that made me feel trapped.  I started doing destructive math in my head, about how nothing had been introduced into my life that I’d had longer than type 1 diabetes.  Diabetes has been part of my life for longer than school, longer than any romantic relationship, longer than any hobby, longer than any car or t-shirt or memory. I thought about life’s milestones and the influence of diabetes on each one, sometimes just a light touch, not enough to leave the smallest mark, other times a heavy-handed drag of claws.

A few months after marking the twenty-sixth anniversary of my diagnosis, I turned 34 years old and felt convinced that I was having a mid-life crisis.  I feared death, actively and aggressively, nervous to go to sleep at night because of the low blood sugars that sometimes crept in.  I started feeling nervous about unreasonable things.  Panic attacks, like the ones I had back in college (when my parents split and my immediate family life was very unsettled) revisited for a few weeks, making my chest feel tight and making me wonder if it was indeed panic or was I having a years-of-type-1-diabetes-induced heart attack.

But then I started filling back up, emotionally.  While marking a diabetes anniversary was the catalyst for darker times, acknowledging the feelings that made me feel unsettled made healing easier.  I didn’t see a therapist (though I would if these feelings were to resurface) and I didn’t add medications to my list (though I would have, were they necessary), but I did ease myself into things like family trips, private (non-blog) journaling, and finding time to dedicate to quiet jogs that stopped my brain from going into panicky overdrive.

One afternoon, I realized it had been days since I’d felt empty.  Weeks went by, turning into months, and then the emptiness started to become harder to remember, harder to pinpoint the “why” of, and life felt more like I remembered before my twenty-sixth diabetes anniversary.

I don’t miss feeling that way – all that emptiness – but I’m not surprised that I felt it.  Diabetes is intrusive and touches everything, like a kid with grubby hands.  For decades, I didn’t mind wiping away the fingerprints that were left everywhere, but last year, I reached not so much a breaking point, but a moment when I couldn’t bend things any further without snapping.  I didn’t want to deal with this disease.  I was mad.  Overwhelmed.  And then that empty.  It was a strange grieving process for a disease that wasn’t going anywhere and for a life that wasn’t over.

It was raining a little when I started running this past Tuesday morning, September 10th, but I decided to go anyway.  I set out after sticking my Spibelt underneath my shirt instead of over it, to protect the Dexcom receiver from the rain.  Sneakers worn from a year’s worth of logging miles and my pump clipped to the top of my pants, I ran.  I’m not a pretty runner – I slog and huff and puff and probably resemble more ‘laboring pug’ than ‘actual human’ while I’m on the trail, but I made the decision to keep going.   With each step, it didn’t get easier.  I wasn’t riding endorphins during my run, and I felt the strain on my muscles and my resolve, but I kept going because it’s good for me to run.  It’s good for me to try.  It’s good to feel healthy and to look healthy and to be healthy.

The following day, Wednesday the 11th, I marked my twenty-seventh anniversary with type 1 diabetes.

I wish I had a more gracious outlook on my experiences with diabetes, but I don’t.  I wish I felt that it was some kind of blessing, but to me, it isn’t.  It’s a thorn in my side that digs in deeper with every passing anniversary, but fuck you, diabetes.  I’m tired at times, but I’m not stopping.  I’m afraid, but I’m still going.  Diabetes has brought me to some of the edges of life, daring me to look into the abyss and wonder just how long I’d know I was falling before I hit the ground, but there’s power in that.  I’m living with diabetes, with all the accompanying ugliness and arrogance, power and determination, all the perspective and perseverance and bitterness, all the fear and fearlessness that comes with any life, but is micro-scoped and magnified by a disease that never, ever takes a breath and doesn’t leave my world until I do. 

Yesterday, my daughter and I baked a cake, but I didn’t eat it, or explain why or why not.  She wanted to make fancy treat, and I wanted to see her smile because she fills my soul.  We put candles on it, hummed a sort of tuneless ‘happy birthday,’ and blew them out, marking a celebration of absolutely nothing and at the same time, everything.

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