Diabetes Blog Week: Continuing Connections

I was so good at keeping up with #DBlogWeek until the last day. Technically it’s over but here’s my contribution to the last topic, mainly because I would like to shout out some cool D-bloggers!

The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year. So let’s help foster and continue those connections as we wrap up another Dblog Week. Share a link to a new blog you’ve found or a new friend you’ve made. Or pick a random blog off of the Participant’s List, check it out and share it with us. Let’s take some time today to make new friends.

New to me is Polina of T1D and Gluten Free. She’s a D-mom who reached out to me as a fellow runner. I salute anyone out there who raises a kid with diabetes and celiac. Sometimes I think having celiac would be even more difficult (socially) than diabetes. Together?! That’s a feat of serious love and effort.

During #Dblogcheck a couple months ago, I found Nerdy April’s Space Adventures. April is trying to become the first Type 1 diabetic in space. She recently became certified as an ACDO, meaning she’s one of the pilots of the International Space Station. HOW COOL IS THAT?!?! Go soak up the nerdy goodness.

Finally, I have known about Celine at Running on Carbs for a while, but it was nice to go back and catch up on her athletic achievements and blogging. She does five bazillion sports (Triathlon! Curling! Golf!) and it’s fun to read about.

That’s it for Diabetes Blog Week 2015! Karen at Bittersweet Diabetes is a champ for organizing this….and reading ALL the posts. That’s…..maybe….the word count equivalent of all of Game of Thrones so far. Perhaps with just as much blood??

You can read more Day 7 posts here.

Diabetes Blog Week: Favorites and Motivations

The week is nearly over, and here is Saturday’s prompt: If you have been blogging for a while, what is your favorite sentence or blog post that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?  (Thank you Laddie of Test Guess and Go for suggesting this topic.)

I think it’s fun to write, so that’s why I started blogging.

Thanks to this topic, I went to the Wayback Machine and found the very first webpages I made……a few Expages sites back in 1999. I read HTML books and ran contests and had this whole network of fellow teenage nerdy girls. I’m not linking because my 13-year-old writing skills….do not deserve to be on here. (SO. MUCH. “KEWL.”) But it was hilarious.

I kept a Livejournal for many years as an older teen, another place filled with humor and angst. Someday I’ll go digging for the best writing there.

I was a guest blogger on ACT1Diabetes for a while. The site is down; hopefully only temporarily because most of my posts on there don’t seem to have migrated to the Wayback Machine. Here’s one, and one of the best…..not for the writing so much as the memories. Simonpalooza, Big Apple Edition.”

But it occurred to me, as we were sitting around at the bowling alley noshing on special-edition Simonpalooza cupcakes (thanks to Tina) and shooting the breeze…..that this gathering was all about love. Usually diabetes meetups occur because of a larger event: World Diabetes Day, the rally for the UN Summit on Non-Communicable Diseases, even dinner after an ACT1 support group. But that day was the first time for me that we were gathered simply to share the love and power of community. To meet new friends and greet old ones again. To talk for hours about everything besides diabetes, but to not bat an eye when a CGM starts alarming or somebody needs glucose tabs. And an opportunity for Simon to share with all of us his profound gratitude for being, in his own words, his “closest allies through a period of near blindness and extreme disability, nurs[ing] me through erratic and unpredictable blood sugars….”

“I consider some of my ‘online’ friends closer than family, for without their support and understanding of the diabetic journey I shudder to think where things might have ended in my spiral into depression and isolation.”

As for Chortling Towards Bethlehem, I’m most pleased with the research I did on the subtle science of racism. If you want something funny, there’s also that time I fell while running, bled everywhere, broke my Dexcom, and met the weirdest tennis player ever.

I’m excited to read other people’s responses to this one! We can read more Day 6 posts here.

Diabetes Blog Week: Cheese and Other Things I Eat

In honor of Katy and her birthday, today’s prompt is hers:  Taking a cue from Adam Brown’s recent post, write a post documenting what you eat in a day!  Feel free to add links to recommended recipes/shops/whatever.  Make it an ideal day or a come-as-you-are day – no judgments either way.  (Thank you, Katy of  Bigfoot Child Have Diabetes for this topic.)

There’s only one thing I eat almost every day.

CHEESE.

 photo cheese halo.jpg
I actually found this image on a site for vegan cheese, SSHH DONT’ SPEAK OF THE ATROCITY

I love cheese. Diabetes plus Scotch-Irish guts means that I can eat pounds of it and be the happiest camper. I love hard cheese, soft cheese, packaged deli cheese, fancy cheese that gets paired with wine, fancy cheese that gets paired with beer, gooey melted cheese on sandwiches, string cheese in cute packages, stinky cheese from France, an entire plate of fried cheese that’s meant to be an appetizer but really I can devour it all myself…..

I’m salivating just writing this.

 photo cheese medley.jpg
PARADISE

So I’ll eat cheese and deli meat for breakfast if I wake up with a high blood sugar. I eat cheese on sandwiches for lunch. 75% of my life, lunch is a sandwich from Subway. Because it’s tasty and moderately healthy and carb-countable. Coworkers make fun of me but HATERS GONNA HATE, PANCREAS NOT GONNA PAN-CREATE INSULIN ANYTIME SOON.

I eat cheese as a snack when I get home from work because I always want something to nosh on then, even if I’m not hungry.

Sometimes when I get home late from choir rehearsal or running practice, I’ll eat a snack beforehand and just have cheese and crackers for dinner.

As for Actually Cooking Food, I’m not blessed with much talent or interest in that department. I do it so my dude and I can have dinners together. Bless my lucky stars, he LOVES to cook and will often whip up delicious Asian food for us to eat.

Or we just get noveau-Mexican delivery from up the block and veg out.

I really like food, I’m just bad at planning for it, making it, or eating the leftovers of it before they start to go bad in the fridge. To inspire creative use of food, and also because I LOVE CHEESE GUYS, here is a picture of a cheese dress.

 photo cheese dress.png
Dress courtesy of http://www.facepalm.com

Read more Food on Friday posts here.

Diabetes Blog Week: What Should Change About Diabetes?

Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

This one is easy.

I’d change the lopsided power structures and unjust systems that keep poor people sick.

Multiple scientists agree that social class is the biggest determinant of health. Being poor increases your risk of obesity, diabetes, asthma, cardiovascular disease, and certain types of cancer. (I’ll give you studies, upon request.)

Both adults and children across the world die every day from poverty, corruption, and lack of insulin.

This is not a matter of “this could use changing.” This NEEDS changing.

Read more Day 4 “Changes” posts here.

Diabetes Blog Week: Let’s Face It, Sometimes We’re All Idiots

Wednesday of Diabetes Blog Week brings us this prompt:

Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)

I’m airing a potentially unpopular opinion here.

Many people join the DOC flock because they find a group of people who “just get it.” People who understand the difficulties of diabetes. People who don’t judge you for your problems with it.

It’s an essential function for the mental and emotional well-being of many. I can’t tell you how many testimonies I’ve seen of people who feel renewed, accepted, understood, and embraced wholeheartedly when they start talking to other PWDs. I felt that way too when I first found online and in-person support around 2010.

Sometimes I wonder if it goes too far.

Sometimes I cringe when I see comments saying, “It’s TOTALLY okay that you skipped a workout because of a low!” or “Go you for eating that giant fudge sundae!”

Sometimes I think we’re too quick to say, “Diabetes just doesn’t make sense!” when really…..we just made a mistake that we can’t figure out.

Can we all ‘clear out’ our ability to talk about D-mistakes honestly? All things being equal, a diabetic has way more decisions to make on a daily basis than a non-diabetic. With all those pathways just in the course of a typical lunch, of course we have a higher chance of borking something. It happens.

Can we ‘clear out’ our tendency to blame the mysteries of D? I do this an awful lot, but Marcus at Sweet Victory got me thinking. “What you’re dealing with is fourth grade math and eighth grade chemistry,” he says. Ginger Vieira, in her book Your Diabetes Science Experiment, is a big proponent of this too, and outlines various exercises for that eighth grade chemistry in her book. I know if I put in more effort, I can figure things out better.

Can we ‘clear out’ our lackadaisical side and be more supportive….by way of positive accountability? Look, if you really want that hot fudge sundae and you accept the resulting blood glucose atrocity, dig in. If you’re intimidated by starting a Couch to 5K program, I would be too if I had never run before. I wonder if we as a community can both accept people wholeheartedly as they are AND help each other be better. I know I’m inspired by PWDs who are kicking ass at life. I could do better at a lot of things, from doing planks to changing my pen needles to giving more cash to Spare a Rose.

Now that I have ‘cleaned out’ this thing that has been bugging me for a while, time to change my lancet, floss my teeth for the first time in two weeks, and actually get eight hours of sleep. And then log my BG response to all that tomorrow.

success kid photo: success kid 1246405349165.png

Read more “Clean It Out” posts here.

Diabetes Blog Week: Is My Business…Your Business?

It’s day 2 of Diabetes Blog Week, and here is the prompt.

Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)

When I say “business” above, I mean literally.

Diabetes and healthcare became my career path when, as a soon-to-be-unemployed college senior, I started looking at job and volunteer postings with gusto. I didn’t know what I wanted to do, or where I wanted to live. The economy was in the tank. Well…., I thought to myself, what am I passionate about? What do I care most about?

While I wish I could be a professional U2 groupie, I also have at least a scrap of logic. So I started searching for listings that included “diabetes.”

Lo and behold, I found an Americorps position in New York City through Community Health Corps. I applied, got in, moved to the Big Apple, and…it stuck. Six years after those Google searches, I still help patients with diabetes, through counseling or encouragement or concrete services like yelling at insurance companies for not covering test strips.

My business life has given me great insight into issues facing the diabetes online community and my personal life with the big D. I try to chime in when there might be useful information to share. Before the Affordable Care Act passed, I shared info about patient assistance programs for insulin and test strips. I’ve waded into conversations about clinical guidelines for newly diagnosed T2s, and whether or not they need to see an endo. (Answer: generally not right away! Usually a PCP works with a T2 patient to manage diabetes, and refers to an endo if their A1C remains persistently high.)

But there’s a world of patient stories that I don’t have the right to share. There are my own feelings of burnout, both with healthcare and with my own diabetes after talking D all day at work. There are worries about our broken healthcare (sick care) system that nag at me, and especially the ways in which hospitals as we know them are very bad at fixing the root causes that make people sick– namely, poverty and social inequality. I’m bad at talking about that last point as much as I should.

For privacy I try to stay semi-anonymous about my work, although I’m sure anyone with a certain amount of google-fu could figure it out. There are two sides to my diabetes life, business and personal. If you read here, you’re much more likely to get the personal. Most of the professional stuff…..I’m keeping to myself for now.

Read more Day 2 posts here.

Diabetes Blog Week: I Can….Train for Ironman with Diabetes

I’m participating in the 6th annual Diabetes Blog Week. Bloggers write posts about a specific prompt related to diabetes for a week in order to share and connect. You can learn more from its founder, Karen of Bittersweet Diabetes.

Day 1: I Can. In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)

The main reason why I started blogging again was so I could document Ironman training. Even though I knew other athletes with Type 1 had successfully completed Ironman triathlons, I could never find blogs or tips about blood sugar management on the run, where to keep a Dexcom while swimming, or how people adjusted their basals during training. In my experience, fellow T1 athletes are often an even better source of wisdom than endocrinologists, CDEs, and exercise physiologists.

So I’m writing because I like to hear myself talk, sure, but also because I hope this can help someone in the future.

The first day of D-Blog Week fits perfectly for dispatch #1. How is training going?

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Thanks to Ginny Weasley and hello_lovee_x3 for the GIF

This is how I feel:

  1. Every time I look at my training calendar
  2. The first eight times I got on my new bike because it has clips and OH MY GOD MY FEET ARE TRAPPED WHAT IS THIS FEELING
  3. Waking up at 6 AM on a Sunday to get a run in before the weekend goes down the drain
  4. When lunch at work gets delayed….TRAINING HANGER
  5. Whenever I tell someone, “Hey, I’ve done all the individual components of an Ironman before….I just have to….do them all together now…..in one day…..”
  6. Oh hell, pretty much on a daily basis

Out of my comfort zone, indeed.

Some of these things are outside my control. After the Shamrock marathon, I took 2 weeks off from any kind of serious exercise because I had minor surgery and the incision was open. I still haven’t been able to swim because of that, although I recently got the all-clear from the doctor. My preparatory training was somewhat unconventional, too, given that I was training for a spring marathon and mostly running, not cycling.

Some of it is probably pointless anxiety. I do have times when I feel confident that I can do this– both the race itself and the massive training leading up to it. It just flip-flops between confidence and despair on a daily basis. Sometimes hourly.

And the rest? Well, I’m taking a deep breath and pushing my boundaries. My dad was very generous and gifted me his old Cannondale Synapse road bike when he upgraded to a new one. My heart was pounding the first time we practiced clipping and unclipping. When it came to Brooklyn and I was finally able to take a regular spin with it, I….chickened out. My blood sugar was 278 after a luxurious brunch, so I played the diabetes card and took a nap instead.

Nuh-uh. I could have totally taken a shot and done some gentle exercise. But careening around NYC traffic and potentially falling headlong into a taxi because I couldn’t unclip in time struck me as far from gentle in that moment.

So the next day, I put on my fancy new shoes, clonked down the stairs, snapped into one pedal, and pushed off. “Okay, now turn your foot….good, good…..you got this,” I told myself at every stoplight. Once I shouted “YES!” when I came to a particularly smooth stop, but the pedestrians didn’t even blink an eye. (New York, ladies and gents, where everyone has always seen worse than you.)

Two weeks and several rides later, I feel much more at ease with the clips. I’m stopping without clacking my shin with the pedals or braking too abruptly. I haven’t fallen over yet…although I’m sure it’s coming. I encourage myself constantly by reminding myself of the new skills I’m practicing on each ride– even something as simple as grabbing the water bottle while riding.

I’m pushing my boundaries when it comes to diabetes, too. After my BG-and-bike flakeout, I decided that if blood sugar was messing up a workout, then my motto should be, “Something is better than nothing.” It’s been ages that I’ve had a blood sugar so dangerously high or low that I absolutely couldn’t work out. Even some squats and planks are better than flopping on the couch.

So when a patient came to the office and presented me with pizza and coffee as a thank-you gift, and my blood sugar exploded as a result (see #4 above), I went to the gym anyways. The prescribed workout was an intense run with hill repeats, but I took my tired ass to the weight room instead and finished with 20 minutes of easy spinning on the bike.

 photo 62e849f4-720c-4931-adfe-4214d4c0d18e.jpg
Sooooo thrilled to be here.

Against my expectations, my blood sugar has been running high lately. Usually when I ramp up a training regimen, it drops like a rock. Increasing my daily Levemir by 25% appears to have helped– my fasting numbers yesterday and today were 86 and 97.

So I CAN do this– test new (to me) athletic waters with diabetes and emerge successful. Someday I’ll have an Ironman finisher’s medal on my wall. Some day I’ll look back and think, “Man, remember when I was too scared of clips to ride my bike??” Let’s hope, anyways.

Read more Day 1 posts here.

 

Things I love this week (5/7/15)

      1. It’s amazing to watch this video of the recent Chilean volcano eruption.
      2. Scully talks candidly about diabetes and anxiety. Read part two of her courageous step forward here. I don’t love the combo of physical and mental health conditions….but I love that she writes so directly and compassionately about a usually hidden topic.
      3. Forget relationships, Psychology Today says– you may benefit more by cultivating “emotionships.”
      4. Twitter is full of lies and misinformation, but also sources of wisdom. I have been learning a lot from following @BmoreDoc Lawrence Brown in the midst of the Baltimore uprising. Highly recommend reading his timeline even if you aren’t on Twitter.
      5. Woman does a 180-lb snatch lift in the gym. Everyone’s reaction (including hers) is fantastic.
      6. And upon Mark Hamill’s recommendation….puppies and kitties celebrating Star Wars Day.

 photo star wars dog.jpg

Tuesday Tunes: Shy Girls, “Second Heartbeat”

Do you like your music smooth? Like, Michael McDonald spreading butter on toast wearing velvet lounge pants smooth? Then you should be listening to Shy Girls.

Shy Girls is Dan Vidmar from Portland Oregon, with various musicians as support. Stereogum describes it as “the exact midpoint between How To Dress Well and the Weeknd”. I’d describe it as slick, soothing, sexy, and of course……smooth.

How did I first find Shy Girls? Dan and I actually went to school together, kindergarten through high school. I remember participating in our high school charity dance marathon my senior year and watching his band play. At that time they were called Lemonsoul, and they played southern rock. Everyone was having a great time, and people were even crowdsurfing in the gym. I watched them and thought, “This is star quality. I’m going to be able to say I saw these guys before they were famous.”

Dan went on to change genres and create Shy Girls, along with another Lemonsoul member Ingmar Carlson. And tomorrow I’m seeing Dan in his SOLD OUT show at the Bowery Ballroom. How thrilling!

Shy Girls’ EP Tmeshare and full album 4WZ are available on all the formats you’d expect: iTunes, Amazon, CD, etc. etc. Let me know if you get Michael McDonald to sing any of it to you. While wearing velvet pajamas.

Everybody Dies

Working directly with patients in health care, in its most distilled form, is being a sentinel against death. Stand in the threshold, ward off Death as long as you can, make a patient’s time in the house of life as easy as possible until Death finally swoops through the door past you. As it does for us all, including one of my patients this week.

This guy—I’ll call him Diego*—crossed my path last summer. He was sent to our case coordination/social services department for a number of reasons. He had a long history of diabetes and heart disease. He lived in government-sponsored housing and didn’t understand the letters he got from Section 8. He had been hospitalized in a psychiatric department several years ago for crippling anxiety and threats of harm, but was calmer now with medication.

We worked together often, chipping away at his problems as much as possible. Sometimes I felt pleased with myself that I could make a difference, like explaining those Section 8 letters and derailing another panic attack. His A1C was dropping and he was happy with this progress (and the praise we lavished upon him for it). But years of poverty and stress can’t be undone by a cute girl telling you Buen trabajo, me alegro mucho que se cuide tanto. He was still sick.

He was sick enough to be sent to the emergency room during a recent specialist appointment, after a doc noticed some worrisome lab results and wanted him to be admitted for monitoring. The admission stretched on. He had stents put in his heart. I stopped by his room many times, although he was often doped up on meds and not really aware that I was there. I talked with his family and did discharge planning with the medical team. He was on the path to going home with visiting nurses and at-home physical therapy. He was set to get better.

Until I checked the RN notes after a couple of days of radio silence and saw that he went to the ICU for cardiac arrest. I called the nurse. “Poor prognosis,” she said matter-of-factly. “He’s on a vent and we’re talking with the family.”

I had other patients to attend to for the rest of the day. I knocked on my coworker’s door and asked for a prayer. “Just pray that he holds on tomorrow so we can say goodbye, okay? That’s all I want.” My colleague, a devout Baptist, folded my hands in hers and started to say, God our Father, we ask for your healing presence for this man, that you bring him into your kingdom when he is ready. Comfort him and his family during this time, and give them strength. We know it is not our time, but your time that orders our lives…

I went to the ward at 9 o’clock sharp the next morning. “Diego…” the nurse said. “He expired yesterday.”

Expired is always a little jarring. Like we’re cartons of milk.

“What time?” I asked.

She checked her record book. “4:12 PM.”

It was while we were praying.

You enter health care, you sign up to be on the death watch. Fact. We do our work on a scale, of course. I don’t know the adrenaline surges and crashes that ER docs or interventional cardiologists experience. I don’t have the deep wellsprings of compassion that hospice nurses need.

But mortality and decline are in my face every single day. Just a couple weeks ago, we had a department meeting on how to cope with patient death. Many of us shared our stories, and a few more experienced coworkers confided in me that they couldn’t because they were just exhausted by summoning up those memories, of loss after loss after loss.

So I find myself on shaky emotional ground right now. It is not death itself that bothers me. It’s 100% inevitable, so better get used to it (unless you’re Voldemort, who clearly had some issues getting used to the idea).

What I’m having a hard time with is striking the balance between acknowledgement of a natural process that I fully signed up to witness to….and acknowledgement of my feelings of grief and fear in the midst of it. I must keep working and tend to my other patients. I must allow myself to be sad to lose the company of a guy whose presence I generally enjoyed.

It’s walking the line between “I accept this” and “I accept this, with grief.”

Working in a supportive environment helps. After I found out, I told another coworker who had known him for years. Together, we went to our boss’ office and had time to utilize the Kleenex box and talk about how we felt. She told me some funny stories about Diego from before I met him. My boss shared her experiences of patients dying in the ICU. We made space for the sadness before getting back to everyday life.

Space is too often a luxury, though. Did you see that photo that went viral last month, of the ER doc crouched in a parking lot after the death of a teenaged patient? This article by Dr. Pamela Wible on KevinMD reflects on why it struck such a chord with the public. Doctors are not allowed to cry or feel grief, she argues, often to the detriment of their own health and well-being. The public, expecting doctor as automaton, was shocked to witness a moment of raw pain.

Listen, some medical professionals are cold and analytical by nature. But some create emotional distance as a way to cope when they are expected (as one Reddit commenter pointed out) to go from, “What do you mean, little Johnny’s not going to make it?” to “We’ve been trying to get ice chips for Grandma for TEN MINUTES and nobody listened to us, you’re a terrible doctor, we’re reporting you to the Department of Health!”

I was lucky that my more demanding patients left me alone for the rest of that day. The grief was compounded by two facts. One, this was the first patient death I had dealt with in a long time. Two, this week is the one-year anniversary of my mother’s mother entering hospice and dying. I barely said goodbye to her because she was so incoherent by the time she decided to “go upstairs.”

Diego was pretty incoherent the last time I saw him, too. Luckily, he was aware enough to wake up, smile, hold my hand, and say, “Carolina.”

One hopes that he greeted Death just as sweetly.

*Identifying details have been changed to protect patient privacy.

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