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Posts from the ‘Diabetes Complications’ Category

Video: Diabetes Complications.

I feel like when people are diagnosed with diabetes-related complications, all of a sudden they feel like they have to hide somewhere and they aren’t allowed to talk about it, so they’re not able to get the support that they need to deal with this new diagnosis.

My macular edema diagnosis didn’t mark the end of my life as a healthy person; it just marks the beginning of a new journey with a new health condition.

You owe it to yourself to live the best life possible.  Even with whatever you’ve got.

Looking in the Windows.

Following through on these eye doctor appointments at Joslin’s eye clinic usually means carving out 5+ hours in the day.

Even though Rhode Island is assumed to have a short commute to Boston proper, with traffic it can take two hours to get into the city.  Which means that for a 1.30 pm appointment, we had to leave the house at 11 am to ensure that we arrived 15 minutes before the appointment time, then the hour and a half appointment (including dilation and exam … and waiting), and then the two hour ride home.

I could find an eye specialist closer to my home in RI, but I believe in the care team at Joslin.  They’ve been caring for me for almost 30 years, and when I was diagnosed with macular edema last year, it was caught so early that no one panicked, but everyone was ready.  They were ready to do all the close monitoring required to track this eye disease, and they were also prepared for any medical or surgical intervention, should things progress to that point.

I trust them.  My complications are “common” to them, in that they see long-established people with type 1 diabetes all the time, and they treat macular edema all the time.  My eyeballs are run-of-the-mill to them.

I have some anxiety about macular edema because it’s new to me, and scary, and I find it comforting that my eye disease is something the Beetham Eye Clinic cares for every day.  It might feel like unfamiliar territory to me, but it’s just another day at the office for them, and for whatever reason, that comforts the hell out of me.

The staff at the eye clinic are very personable, and the technician who put in the dilation eye drops and tested my vision prior to the exam was extremely kind.  Their compassion helps put the feelings of trepidation to rest.  I don’t particularly care for the personality of the doctor, but in these appointments, we don’t really talk about “the whole patient.”  The focus is on the whole eyeball.  In this instance, I am willing to give on the relationship side of the HCP/patient equation in favor of his expertise.  Besides, it was easier to feel less aggravated by a doctor who speaks more to the computer screen than to the patient because this time, the news continued to be good.

This screen is how your eye looked in December,” pointing to a swollen optic nerve and a bright, obvious fat deposit on that nerve.  “And this is how it looks today,” pointing to a screen showing significantly reduced swelling and a barely visible fat deposit.  “This is better.  Much better.”

“So I’m still moving in the right direction?”

“Yes, this is good progress.  We can continue with appointments every six months.”

Last year, I had no idea I had this complication.  The symptoms of macular edema are hard to detect unless the eye damage takes a significant turn.  I had no idea something was brewing in my eyes until it was detected – and early, at that – by a dilated eye exam and a team of excellent doctors.  Eye-related diabetes complications unnerve me, but I’d rather know about them and track them aggressively rather than be surprised by them and experience irreversible damage.

We spent hours in the car getting there, considerable time in the waiting room, and then hours in the car on the drive home.  But I’d do it all over again, and will in a few months, in order to keep close watch on this diabetes complication.  My doctors can only help me with the things I let them know about by way of routine exams and screenings.  Informed doctors make me an informed patient, and everyone being well-informed helps me stay healthy.

I’d rather hope to regain good health than to fear the unknown.

D-Blog Week: What Brings Me Down … and Then Back Up.

Diabetes has made my body broken in ways I don’t readily admit, but I am sometimes forced to acknowledged.  People talk about my daughter’s chances of developing the disease and they always give me what they think is a comforting comment – “At least it would be the devil you know,” – but that doesn’t ease my boxed-away fears and I usually end up saying, “Yeah,” through gritted teeth because I don’t know how to explain that this disease isn’t the devil I know.  It’s the devil that I think I know, but it still tricks me and the road takes unexpected turns.

Last night, before bed, I kissed my husband goodnight and tested my blood sugar.  The second-to-last thought I had before bed was how thankful I was to hug my daughter and my mother on Mother’s Day.  The last thought I had filled a fleeting blink of a moment – “I hope I wake up in the morning.”

Diabetes isn’t just in my pancreas.  Or on my lab work printout that gets mailed alongside my electric bill and the leaflet about lawn service.

Diabetes gets right into my head, into my mind, and frays the edges of my emotional health.  I feel happy and healthy the majority of the time, but diabetes does play a huge role in the moments that make me feel vulnerable.

It’s not a “set it and forget it” disease.  It touches every moment of every day.  It impacts decisions I made decades ago, and I worry about its influence on my health decades from now.  Even something as simple as lunch isn’t “just lunch.”  The food on my plate looks more like a paint-by-number set than actual food.  It’s not a hamburger and fries – it’s 90 grams of carbs that I need to calculate insulin for.


To be honest, this Diabetes Blog Week topic makes me uncomfortable.  Not because it’s bad, but because it’s hard.  It makes rational thoughts tumble down the rabbit hole until I’m in so deep that I’m grasping at roots to pull myself out.  It’s hard to admit that, even though I don’t feel sick, I’m not entirely “fine.“  It’s hard to talk about the parts of diabetes that make me feel sad or depressed because that’s truly not how I feel the majority of the time.

But I have felt long jags of it.  Long periods of emotional confusion where, whether I’d care to admit it or not, the root cause was diabetes.  Even though I don’t want to be defined by this disease, it does explain some of my sadness.

As I wrote last September:

“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.” 

Perspective is a funny thing, though.  Sometimes people with diabetes don’t give themselves enough credit for achieving the baseline that others may take for granted. Knowing I live with a disease that has aggressive moments and many bodies in its wake, the bad days can be really bad.  But the good days are magnified, and magnificent.  I don’t know what it’s like to be pregnant and not have diabetes, but I do know that the moment I gave birth to my most treasured Bird, the joy was indescribable because I felt like I had defied odds en route to motherhood.  Small victories fill my soul because I know they are the result of my hard work.

This is damn hard work, with the reward for a “job well done” being the opportunity to do it all again tomorrow.  On some days, this relentless cycle can bring me down. But it doesn’t take much to fill me back up.

And I am grateful for a body that, despite not making insulin, still knows how to make joy.

 

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.

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