Animas

Prepping

kmeiser3 — Mon, 08 Apr 2013 18:21:02 +0000

As I sat and typed this, five more inches of of snow had fallen overnight. Five. On its own, this isn’t a big deal or a notable accumulation of winter wonderland, but this was only a few days after winter storm Nemo came ripped through New England. You know, after over twenty-five inches of snow came down on the little state of Rhode Island.

Thankfully, my family lives in a town where the road crews are predictably prompt, and our roads have remained well-plowed throughout this aggressive winter. And despite rampant power outages in our area, our home didn’t lose power for more than an hour or two.

But in other parts of the state, people were stuck without power for up to a week, with roads that were impassable for several days. And this made my husband and I reassess what our emergency plans were for these kinds of situations.

“What do we really need to sustain us, and you, for about two weeks?” my husband asked.

“Like if the power goes out? Like it did during the hurricanes?”

“Yeah. The power going out, the roads being impassable … what do we need to take care of your diabetes if we’re trapped in the house for a week or two? Realistically?”

This is the point in our relationship where we tapped our inner “preppers,” aka the people who plan and prepare for worst-case scenarios.

“So you want what’s on the ‘must-have’ list, and then the ‘want list,’ for a week without escape?”

It’s amazing how easy I can list off my medical must-haves, and how long the list of ‘wants’ is. I can exist on very little, but to rein this disease in and feel my best, there are a lot of medical accoutrements on tap. Diabetes, by its very needy nature and unpredictable core, makes preppers out of all of us who are living with it.

“I must have insulin, both long-acting and short-acting. And syringes. Test strips, a working glucose meter, and glucose tabs. That’s my absolute must-have list.” I took a sip of coffee and watched as the snow fell relentlessly outside, piling up on the deck. “The want list? That’s a lot longer. I’d want my pump, so I’d need infusion sets, insulin cartridges, and short-acting insulin. But we’d also need a few insulin pens and pen needle tips, in case of an emergency. And my CGM, so I’d need sensors and the transmitter, and hopefully the receiver is charged if the power goes out. Glucose meter and test strips and maybe a few clean lancets would be good. A few jars of glucose tabs because they’re indestructible and could survive an apocalypse. And a stash of water, in case of high blood sugars and the need for hyper-hydration.”

My husband paused. “So your whole want list is basically the contents of your purse on any given day.”

I laughed. “You’re right!”

I don’t walk around all day long expecting to be stuck in elevators or on subway cars that break down or trapped in three feet of snow , but I am prepared for them. Diabetes preppers prepare for the worst, hope for the best … and exist somewhere in between.

Basal Thinking

kmeiser3 — Thu, 01 Jan 1970 00:00:00 +0000

Three days ago she was in the 60’s, just before school let out for the day. It happened again yesterday, and once last week.

Tuesday, to be exact.

As I’m sitting here, I’m acutely aware that twenty-six minutes ago, she was due to the office for her lunch check and bolus. I haven’t gotten a call from the nurse, so I’m assuming everything is okay. Three hours from now, I’ll know if the basal change I made to avert those afternoon lows is showing signs of helping.

Basal Thinking: It’s how my brain works.

Whether life is swirling around me at 100 mph, or plodding from one day to the next, this baseline thought process is constantly running through my mind. Much like basal insulin...it’s there, in the background, regardless of anything else.

Sometimes I have to stop myself from speaking my basal thoughts out loud. When ordering lunch, “I’d like some chicken salad on a bed of greens and a correction, please” might cause a little confusion. Likewise, “I’m going to the grocery store to pick up some milk, bread, and 40 carbs” could make a friend pause during a telephone conversation. “Yesterday we had the best time at the park and 123mg/dl is a number that makes me happy” (which is completely true, by the way.)...I can already envision the blank stares. “You’ll need to increase the oven temperature and the basal” when sharing a favorite recipe? Nope.

When my husband had a shoulder surgery scheduled for 1 pm, I sat in the waiting room wondering how we’d manage diabetes if she couldn’t eat or drink anything for thirteen hours. While in labor a few months after her diagnosis, I watched my baby’s heart beating around 140 bpm on the fetal monitor, and hoped the friends who had graciously agreed to help us with were seeing the same numbers on her glucometer. Recently, I had an outpatient surgical procedure, and the first thing I remember after waking up in the recovery room is that I was asking someone to tell me how my daughter’s blood sugar was doing.

It’s just there – in my subconscious all the time.

To be honest, I never meant for my brain to think like this. It just happened. Day after day, number after number...slowly something was changing on the inside. The things that used to monopolize my mind were quickly replaced with acronyms like “ISF” and “IOB” and “TDD”. Before long, I found myself anticipating how I would manage her next glucose reading while pondering what to make for dinner. I can tell if two hours have passed since her last bolus without even looking at a clock, and I may not be able to tell you the date our milk expires, but I can tell you how many juice boxes are sitting in the kitchen cabinet.

In this day and age of endless distractions, I find myself having to make a conscious effort not to let my mind wander into the abyss of blood sugar patterns, pump settings, and a million variables that affect glucose levels. When my phone alerts that an email has arrived, it takes effort not to interrupt what I’m doing to see if it’s the school nurse. There’s an inner turmoil that remains unsettled when I find myself troubleshooting an unexpected high or low...a turmoil that will nag at me, wherever I am, whatever I’m doing until I figure out the cause – or at least until I manage to chill out, and accept the fact that, sometimes, there just aren’t any cut and dry explanations.

Basal Thinking has become part of who I am. There was a stretch of time when it dominated my every thought, and I felt suffocated by the constant chatter in my mind. Over the years, I’ve learned how to channel the white noise into a productive thought process instead of the confusing babble it used to be.

So Many Adjectives

kmeiser3 — Tue, 12 Mar 2013 15:50:28 +0000

Have you heard the myth that the Inuit people have a hundred different words for “snow?” (I Googled this endlessly one afternoon, trying to find out how many words for snow they actually had, but the reports were conflicting. The most consistent answer I saw was fifteen, but I saw numbers as high as a hundred.) Regardless of how many words they have for snow, there’s more than one version in play. It’s hard not to assign different subtleties and nuances to something that surrounds them every day.

Sometimes I wish I had a hundred words for “diabetes.”

Diabetes is the same thing every day, only not in a predictable way. It’s the same thing in terms of testing blood sugar, calculating and administering insulin doses, counting carbohydrates, managing exercise, emotions, and other assorted variables, but it doesn’t always play out the same way. Even if you do the same thing – exactly the same thing! – each day, you can still have bafflingly different outcomes.

Noting a trend here? Nothing is consistent about diabetes except diabetes. Which is why I do love the English language, because there are so many adjectives that hit the mark for this unpredictable noun known as “type 1 diabetes.”

On any given day, diabetes is frustrating. Testing my blood sugar after a breakfast of scrambled eggs and an avocado and seeing a number in the 200’s? What the what?? Or when I’m calling insurance companies to ask why my glucose meter test strips, once covered in full, are now only covered 80%, and are suddenly reduced to four “approved” strips per day?

Diabetes can also be scary. Low blood sugars in the middle of the night where you wake up, damp with sweat and confused, chomping on glucose tabs as quickly as you can to bring some relief are very scary. The list of diabetes-related complications that crop up when you think about high blood sugars are also scary. Worrying about the future can be scary. (There’s a lot of scary.)

But diabetes can also be strangely empowering. When I pull my headphones out of my ears and hit pause on my running playlist, to see that I’ve clocked a few miles on the treadmill and my blood sugars haven’t bottomed out, I feel like I’ve won a prize. Or when I realize that I’ve worked a long, hard day and diabetes was merely a blip on the radar, that makes me feel like I’ve seen extra hurdles that day that my coworkers have no idea about, but I cleared those hurdles without issue.

Diabetes can also be a blessing (albeit one I would happily give back, if given that option – let’s be clear). Living with a chronic illness can sometimes make other frustrations seem smaller and more manageable, by comparison. There’s a perspective gained from living with diabetes, and that perspective helps keep me from sweating the truly small stuff. And diabetes also makes every call from my mother, every kiss from my husband, every big hug from my daughter that much sweeter.

Mostly, diabetes is diabetes. Some days, it’s frustrating and trying and scrapes at my last nerve. Other day, it’s quiet and dormant and borderline well-behaved. But every day, it’s diabetes. There’s only one name for it, but that one name plays host to a potluck of different definitions and emotions, changing and swirling with the ebb and flow of each day.

Take that, snow.

Twenty Leaps of Faith

shouliha — Thu, 01 Jan 1970 00:00:00 +0000

I sat at my kitchen table waiting for a few other mothers and their toddlers to show up for a play date. My little girl wandered back and forth between the kitchen and the living room, carrying her blocks and stuffed animals. She could tell we were having friends over. Watching her made me wonder if the past two weeks had just been a dream. She seemed to fall right back into place – lining up all her toys where she knew the children would play, and pushing the box of toy instruments to the center of the room.

Meanwhile, I stared at the little bowls of sugar-free gelatin and whipped cream I had decided to offer in lieu of cookies. No juice boxes for the kiddos today. Just water. And...I didn’t have any cute matching paper cups and napkins. It was more of a hodge podge of whatever I could find, leftover from cookouts and birthday parties gone by. Baskets that had once donned my bay window for decoration, now held syringes and lancets. Emergency doctor phone numbers were in big bold writing next to the telephone. Piles of papers and books and pamphlets were scattered on the countertops for quick reference.

We had been home from the hospital for about a week, and it was my turn to host. I was pretty sure word had gotten around about our recent hospitalization, but wasn’t sure if anyone actually understood how drastically our lives had been turned up-side-down.

“She has Type 1 Diabetes.”

I was repeating it to myself over and over again. I would need to be able to say those words without crying, and secretly hoped that I’d be able to remove the emotion by turning it into a robotic statement.

One by one, they arrived. Smiling, happy mommies with their smiling, happy babies. We passed the time chatting about this, that, and whatever. And then...it was time. I needed to check her blood sugar. The proverbial elephant in the room was about to move.

Mostly they just stared.

No one really knew what to say.

Me included.

It is estimated that forty children in the U.S. are diagnosed with Type 1 Diabetes every day. That’s forty sets of friends, family, neighbors, and loved ones who don’t know what to say. Forty rooms full of elephants. Forty sets of stares.

So, if you’re somehow connected to one of the forty children from all the yesterday’s gone by, today, or the tomorrow’s yet to come...here’s twenty things you can say RIGHT NOW that will help:

1. I made you dinner. Here are the nutritional labels, and a list of the ingredients I used.

2. I want to have {name of child} over for a play date. When can we talk about how to make that happen?

3. You’re doing a wonderful job.

4. I’m proud of you.

5. I’d love to help with the other kids so you can {insert whatever -- go on a field trip, attend a meeting at school, run some errands, go to a doctor’s appointment, etc.}

6. It’s okay to cry.

7. I’m sorry you had such a long night. How can I help make your day easier?

8. How are you?

9. I’m here to listen.

10. It’s not your fault.

11. Breathe.

12. I believe in you.

13. I want to help.

14. Teach me how to test a blood sugar.

15. I’m not afraid to learn how to give a shot.

16. Show me how to count carbohydrates.

17. Where can I learn more information about Type 1 Diabetes?

18. There’s a diabetes walk coming up in your community. Let’s organize a team.

19. Do you have everything you need to take care of {name of child}? Is there anything I can do to help make sure you have the supplies your family needs?

20. You can do this .

Friends for Life

shouliha — Thu, 10 Jan 2013 05:42:22 +0000

“For life.”

It’s one of those little, prepositional phrases that means so much for a person with diabetes, because that’s the trajectory of this disease; it’s chronic. We have it for life. And that can be a very heavy concept to carry, not just for the people who have diabetes, but for the people who love and care for them.

Which is why I take so much comfort in a conference that takes place every summer in Orlando, Florida. It’s put together by the Children With Diabetes organization, and it is a gathering of families who are living with diabetes in one way or another.

It’s called “Friends for Life.” And it casts a new light on what “for life” might mean to this community.

A few weeks ago, I was at the annual Friends for Life conference, making my fourth trip to Orlando for the meeting. (For the last few summers, I’ve been part of the conference as a member of faculty, which means I have the honor of leading and co-leading some of the sessions.) Every summer, for the last few years, my family has laughed at me for “choosing to go to Orlando in the thick of July.” But every year, I’m so grateful to have access to this kind of community (regardless of the unrelenting heat and humidity).

This conference is like my beloved Clara Barton Camp, brought to life for adults. With meals that are carefully carb-counted (and tables of gluten-free options for PWDs rocking both type 1 diabetes and celiac) and people who don’t ask, “Can you eat that?” when you take a cookie from the dessert table. This conference has sessions where you can learn about the most recent developments in diabetes cure research, from some of the researchers themselves. And it also has sessions where you can connect on an emotional level with your peers (read: sit in a circle together and cry, if you need to), nurturing the psychosocial side of your diabetes management needs.

My mom and I have talked, at length, about how this conference makes me feel, as an adult with type 1 diabetes.

“I wish it had existed when I was a kid, because then I wouldn’t have felt like I was the only person who had type 1 diabetes,” I explained to her one afternoon. “I really think my perspective on diabetes would have been a lot happier, if I had access to some kind of community.”

My mother nodded. “I agree. I wish this had been available to me, as a parent. I felt so alone. Those parents, who get to attend that conference? They know right off the bat that there are other parents doing exactly what they’re doing, worrying exactly what they’re worrying about.” She paused for a minute. “Can I go with you next year?”

“Absolutely, Ma. Let’s do it.”

This conference is not perfect. It won’t heal all that ails you. It doesn’t make diabetes “go away” for the week, but it makes the idea of “for life” a little bit easier. Because if these friends are for life, it makes life with diabetes just a little bit easier.

That can make all the difference - for life.

Obstacle Course

shouliha — Thu, 13 Dec 2012 05:42:49 +0000

There has only been one time – ONE TIME – that I used diabetes as an intentional excuse. One time. And I was always so adamant about not letting diabetes ever keep me from doing anything … irony, anyone?

I was in seventh grade. The way the gym at my middle school was set up was such that the gymnasium floor was at the base of a high walled, enormous room. Bleachers lined the incline on all sides. It was set up like a basketball arena. Very easy to see the victims, … er, participants on the floor.

My classmates and I had changed into shorts and t-shirts and were filing in to the gym. And there, spread out before us like a gladiator coliseum, was An Obstacle Course.

The unforgiving pommel horse was there ,rearing its ugly head, sneering at us all. The parallel bars mocked us. As did their uneven friends. And the nefarious rope climb was set up at the dead center. The only thing missing was a spotlight, fixated on the participant.

“Line up, please? Girl, boy, girl, boy.” Gym Teacher put one hand on his hip, the other gesturing towards where we were to form a line.

I felt my pulse quicken. A bead of sweat emerged from my hairline and made way for my brow. I felt disoriented and confused. What was happening?

“Am I low?”

No way. I was panicked at the idea of performing these physical feats in front of my classmates. In school, my confidence stretched from academia to social settings, but I had ZERO faith in my athletic abilities. I fall over my own feet on a regular basis. I was notorious for slipping while standing still. My legs have the steadiness of a newborn colt on a banana-peel-laden floor.

At 13 years old, I couldn’t find a way out of that gym fast enough.

“Gym Teacher, Gym Teacher.” (Of course I didn’t call him that, but there is no way I’m blowing my cover now, after all these years.) “I don’t feel very well. I need to go to the nurse.”

Being the only diabetic in the school and having experienced a true hypo the week before during dodgeball (I kicked butt at dodgeball), Gym Teacher dismissed me with the flick of his wrist. And I trotted, churning with a mix of guilt and relief, to the nurse’s office.

To the credit of my integrity and ever-plaguing conscience, I didn’t actually lie. It was more lying by omission. Just by saying “I don’t feel well,” my need for medical attention was never questioned. But it is the only time I’ve ever let diabetes play the role of crutch.

Sure, I’ve forgiven myself. And even now, as I write this, I laugh a little bit. But I can’t forget it.

And even now, a pommel horse makes me break out in a cold sweat.

Child-Proofing Diabetes

shouliha — Thu, 31 Jan 2013 05:43:16 +0000

When Birdy was a little baby, I didn’t have to worry too much about what she was able to get her little mitts on, because she was either happily in my arms or happily napping in her crib pretty much all the time. Keeping my diabetes bits and pieces out of her reach was easy, considering how limited her reach was. My main concerns were keeping my pump infusion set and my tubing away from her sometimes-flailing limbs. (There was a time that I was feeding her and she kicked my site loose from my abdomen with her teeny toes. Powerful little thing with well-aimed kicks!)

Once she was crawling and exploring her world a bit more, I became hyper-aware of how many test strips were littering certain parts of my home (somehow, there is always a cache of them right next to the garbage cans, as if I can only get so close to tossing them in properly) and tried to keep my daughter from putting them in her mouth. Pump supplies were discarded into a sharps container, for the most part, but there were moments when she’d grab the freshly “installed” pump tubing before I had a chance to tuck it away, sometimes forcing me to redo an infusion set change. Sharps containers were locked away in bathroom cabinets and meter cases weren’t ever left on reachable countertops.

But then came walking. And with walking came climbing onto stools and exploring kitchen countertops. The floodgates of exploration were opened at that point, and I frantically tried to protect my daughter from all of the diabetes daily bits and pieces. (The day she learned to unzip my glucose meter case was a fun one – “Hi mommy! I found your blood sugar!” and all the used test strips came raining out.)

And this is when I really needed to childproof my diabetes.

Like when she wakes up in the middle of the night and cries out, “I’m havin’ a nightmare!” and my husband goes downstairs to bring Birdy up to sleep in our bed. Even in the middle of the night, I have to remember to lock the screen on my pump to keep me and technology safe from the inquisitive toddler fingers that love to press buttons.

Or when she asks to “help with check-a your blood sugar,” and asks to press the white button on the lancing device to deploy the lancet. I need to remember that she knows how to work the lancing device, making it unsafe for me to leave anywhere she can reach.

Or her most recent diabetes moment, where she figured out how to disconnect my infusion set from the site. “Birdy, you cannot touch mommy’s infusion set, okay? It needs to stay connected. It’s important.” She nods. “But it’s fun! I can make it go in and out!” (Now our reasons for time-outs include not listening, throwing toys, or disconnecting mommy’s insulin pump.)

Thankfully, with this new need to child-proof my diabetes also comes the evolution of my daughter’s ability to understand my diabetes. When my CGM beeps and alerts to a falling blood sugar level, she pats my hand and asks if I need to test my blood sugar. When she helps me prick my finger, I get a kiss on the cheek for being “brave.” And when I tell her that we need to wait a few extra minutes before we leave to go play outside, she sits patiently and counts the glucose tabs in my hand as I eat them. “One, two … three glupose tabs! Oh, now two glupose tabs! And then we go outside.”

Sometimes I feel like I’m busy protecting my daughter from chaos of type 1 diabetes in our home, but other times, I know my daughter is the one who is safeguarding me.

The Wheels on the Bus

shouliha — Fri, 25 Jan 2013 05:43:39 +0000

“The wheels on the bus go ‘round and ‘round, ‘round and ‘round, ‘round and ‘round! The wheels on the bus go ‘round and ‘round, all through the town!”

Her little voice rang out from the car seat in the back of my Honda as she kicked her yellow rain boots with glee. “Wheels on the bus, mama!!”

“I know, Birdy. Mama is having a low blood sugar, so we need to wait a minute before we drive.”

The car was running, but in park in the shopping center parking lot. I had my seat deliberately pushed back from the steering wheel so that my feet couldn’t touch the pedals – a reminder that I should not be driving until my blood sugar was above a certain threshold.

My meter had me at 49 mg/dL, and I knew it was going to be a few minutes before the glucose tabs hit my system and made me feel like a human being again.

“Low blood sugar, mama? How ‘bout a glupose [her verbal take on “glucose tabs] tab?”

“I’m eating them right now! Don’t worry – I’ll be fine in a minute. But we have to wait until I feel better before I can drive us home, okay?”

“That’s fine,” she said, examining the bottom of her boot. “We can wait.”

“Thanks, kiddo.”

I wonder what she thinks about diabetes, now that she is a little bit older and a wee bit wiser. She likes to press the button on my lancing device to deploy the lancet when I test my blood sugar, and she reads the number back to me from the screen of my meter. (“Five … four … three … two … one … nine and then nine, Mama! You have two nines!”) She’s fascinated whenever I use a syringe (“You get your shots!”). And she knows that the pump on my hip has insulin in it, for my “diabeedles.” The bits and pieces are starting to come together for her, but as bits and pieces only. She doesn’t have much to draw from in terms of how diabetes can derail something as simple as our ride home from the store.

She colored in a coloring book for a few minutes while I had a few more glucose tabs.

“You feel better now, mama?”

“Not yet, kiddo. Soon. I promise. Don’t worry – we’ll be home and then we can play outside.”

“I like outside.” She paused, absently coloring an elephant with her bright purple crayon. “And you feel better soon. Have some more glupose tabs and then check your blood sugar, then we drive home and play outside.” She nodded her head. “You feel better soon. Don’t worry.”

She sees me do this every day, this diabetes thing. She’s tuned in to so much more than I could possibly recognize. Learning moment by moment, bit by bit, my type 1 diabetes will become part of the tapestry of her life simply as part of it.

“Thanks, Birdy. Love you!”

“Love you, too. Sing the Wheels on the Bus?” Without waiting for me to respond, she launched into a high-volume version. And as the glucose tabs started to hit my system, I leaned back against the seat and listened to my kind, little daughter serenade me through a low.

Running for my Life

shouliha — Fri, 01 Feb 2013 05:41:03 +0000

I hate running. (I know, I know – don’t say “hate.” You don’t “hate” it, do you?)

Actually, I might. Since I was a little kid, I wasn’t ever known for my grace. I was known for imaginative stories and silly games and being an all-around goofball, but athleticism and I weren’t well-acquainted. (When I was about ten, I played in a round-robin soccer tournament with my team. Somehow, I scored a goal for the wrong team and we were knocked out of competition. It’s the only goal I’ve ever scored, to date. And I’m sadly a small bit proud of it.)

So back to running – it’s not something I ever thought I’d do, willingly. My body knows how to run, but until recently, it was something I did to escape harm, like if I needed to rescue my daughter from the top of the swingset. Or if a bear was chasing me. (Hasn’t happened yet, but I’m prepared, mentally and now somewhat physically.)

But for some reason, I decided to give it a try a few months ago. The weather was cooling down in New England after an exceptionally hot summer, and I was enjoying walking a few miles at the gym every day. One afternoon, I decided to see if I could run a little bit. And a “little” was all I could do, because after about five minutes, my body was begging me to take a break and maybe hyperventilate.

There was something about NOT being able to do something that made me want to do it even more. I don’t like feeling limited by my body. I don’t want to be the kind of person who says, “Well, I can’t because I can’t.”

Which is why I’ve decided to become a runner. Only I don’t feel like a runner. And I’d never call myself one. Technically, I’m an awkward trotter.

What makes someone a runner? Do you have to have running shoes? Do you have to bang out fifteen mile runs without breaking a sweat? Do you have to have a collection of those numbers people who compete in races pin to themselves? Do you have to be good at it? Fast? Graceful?

Nope. You just have to try. Running isn’t something you have to be good at, but more something you just have to do.

In the last few months, I’ve gone from not being able to make it through five minutes of a jog on the treadmill to being able to go four or five miles without taking a break. (Okay, so most often four miles, but I did make it to five a few times. That counts, right?) But I don’t consider myself a runner, because I still feel awkward and slow and like everything I feel self-conscious about, physically, is on display.

I must be some kind of sadist, though, because that’s exactly why I keep doing it.

It’s uncomfortable. It’s hard. Running makes me feel exhausted and sweaty and sometimes makes my blood sugars plummet. I don’t like it. I kind of hate it. But every time I hit my goal for the day, or for the week, I feel proud of myself. When I can watch my blood sugars holding steady while I work hard, I’m proud of myself. And on the days when I’m feeling lazy and sluggish, and I still make myself clock a few miles, I feel even prouder. Running was once something I hated and shied away from, and now it’s something I feel like I have taught myself to push through and own.

Much like diabetes.

Why Personal Stories Matter

animasSadmin — Mon, 15 Oct 2012 05:53:31 +0000

People have asked me, “Why do you write about your personal diabetes life stuff on the Internet?” And my response is usually pretty simple: “I felt alone with diabetes for the longest time; now I don’t. Sharing stories makes diabetes easier to handle, for me.”

Why do personal stories matter at all in the life of someone with a chronic illness?

While a person with a chronic illness is so much more than their illness, sometimes their illness is more than just “following doctor’s orders.” Personal stories – real stories – about life with a chronic illness can provide the hope, encouragement, and community that a person needs to keep at it. The Internet, and all of the personal stories found there, provide resources to help take care of the whole patient, not just their lab work or their medication lists.

Diabetes looks like one thing when you read about it in text books and discuss it with medical professionals who aren’t steeped in a life with it. It’s entirely different when you see how this chronic illness fits into real situations.

When I was first diagnosed with type 1 diabetes at the age of seven, the support network for my family and I was limited to who we knew locally, and at that point, there was only one other family we knew of who had a kid with type 1 diabetes. All of our medical information came from our doctor, and all of our, “Okay, so how do we actually do this, in our home?” anecdotal sort of information came from that one other family. They helped my family make proper and realistic sense of how to manage this disease.

Fast-forward to now, where the Internet has become a constant, real-time source of anecdotal information about life with a disease, and you find diabetes patients in particular sharing best practices, tips, emotional support … everything about life with diabetes. The patients who are sharing their stories aren’t doing it to replace the advice of medical professionals, but instead to supplement it. And there’s no better endorsement of a treatment or drug than hearing another patient who you trust say, “It worked for me, and I’d recommend it.” Their opinion matters so much, because they’re in the trenches of life with diabetes, right beside you. Patient advocates can be so important in understanding a disease and choosing treatment options.

When I’m on the hunt for health information, I’m guilty of Googling. And clicking on the first link I see, sending me down the rabbit hole of fear. But then I remind myself that not everything you read on the internet is true, and that it takes more than one or two words in Google to ferret out what you need, so I take a step back and consult government sites and educational sites, then call my doctors and fire off my questions to them. I’ll read anything, but I trust very little implicitly.

This is why personal stories matter. They change how people perceive a health condition, both people out there in society at large and for people with that health condition. Community, kindred spirits, help patients cope with whatever a condition may throw at them. Empowerment comes in many forms, but most effectively cloaked in this.

Hope. And it's hope that keeps so many of us testing our blood sugar every morning, working with our doctors to best-manage diabetes, and monitoring this monster closely.

Patient stories, told honestly and without fear, provide that hope. That community. They show us we aren’t alone, and that there’s something worth continuing towards. That hope is what keeps us working towards better health.