Another Time Warp Closes

When my best friend called me from the other side of the country to tell me she just found out she had gestational diabetes, I wasn’t surprised.

It wasn’t that her health history made it predictable.  She’s the healthiest person I know, works out regularly and consumes kale, quinoa, and kombucha like they’re actually enjoyable.  We became vegetarians in high school, and while I survived off of potato chips and cheese pizza she took vitamins and ate vegetables.  Years later she’s still a vegetarian and I’m (cough) not so much.

Maybe I knew something was wrong because we’ve been best friends since grade school and I have a sixth sense for what she was feeling.  Maybe her unusual silence in the days after I knew she was going in for testing was a giveaway. 

Either way I should’ve been prepared.  I understand what it’s like to get the news that you have diabetes; I don’t know what it’s like to hear it when you are carrying another human life inside you.  It seemed like an illness with an expiration date that was more complicated in many ways than regular diabetes, because she had to learn fast and in the middle of so many other weird things the body does during pregnancy.

I wanted to tell her that it’s not as bad as it sounds.  I wanted to reassure her that everything they tell you seems daunting at first, but it is entirely manageable.  I wanted to assuage the guilt in the back of her mind that it was somehow her fault.  I wanted to tell her it was not a tragedy but another challenge and that no matter what we would figure it out together.

But when she told me about the diagnosis and the tear-filled weekend that followed, all I could do was listen and offer encouragement.  I never got around to saying “me too.”

It seems like every time the opportunity to disclose comes up like this it’s like a time travel warp in a 90’s movie that will close forever if you don’t jump through in time.  Every moment after that window feels like it’s irrevocably too late. 

The next phone chat is the second best time to tell her, but even when we talk about her struggling with the new diet and routine of blood testing I offer my support but not expertise.  The calls after that, the text when she loses a relative, the days approaching her delivery date...with every new occasion it feels more and more awkward to say it, like it’s at the worst selfish and at best irrelevant.    

And with the passage of time, what you didn’t say becomes what you can’t.

But this is truly not a irreparable state, and I will tell her, because I know simple candor will cut through the awkwardness that accumulates each day I continue to hide it.  I have faith in the Chinese proverb, “The best time to plant a tree was 20 years ago.  The second best time is today” and the countless other adages that guide us past a view of the past as quicksand prohibiting progress and cementing mistakes.

The Vacuum Epiphany

For 30 years of my life I’ve loathed vacuuming. 

Technically I shouldn’t count the years before I could walk, talk, or you know, understand the concept of vacuuming, but the hatred I harbored in the comprehending years more than made up for it. 

I don’t know what it was that spawned so much disdain.  ( I’m a clean person, I swear.)  Maybe it started because it was one of my almost daily chores as a child, though that certainly didn’t ruin dishwashing for me.  Maybe it was the years I spent as a waitress at a local restaurant where it took at least 15 minutes to vacuum up the fries and chew spittle at night.  For most of my life I’ve attributed my hatred of vacuuming to an inherent aversion to either floor chores or physical exercise itself.

So I avoided it.  At the last townhouse I lived with a roommate—hold your dinners people if you vulnerable to queasiness—I vacuumed probably three times in two years.  It disgusted to me sit on the floor, look at it, or even think about it, but I wouldn’t bother to vacuum. 

For one, it seemed pointless.  It never seemed to get clean, and like all the other vacuums in my life, I believed the one available at the time was more likely to start on fire than suck up the dirt and grossness.

At my new apartment though where I was finally reunited with my cat I realized I had to do the unthinkable: buy, and potentially use, a vacuum.  The cat fur was rolling through the place like tumbleweeds in the Wild West before the end of the first week.

So I bought a vacuum.  And realized everything I’d believed about vacuuming in the previous decades had been wrong.

I found I enjoyed it.

It was easy, and best of all, the results were clear.  The carpet looked as if it’d been fluffed, but best of all I could see all it had picked up.  At work I thought about it, even looked forward to it.

And realized that all along what I had hated wasn’t the practice or concept of it.  The equipment I had been using was consistently ineffective; choosing the right tool made all the difference.

I should’ve known that, because it’s clear in diabetes care that choice in supplies matters significantly.  I feel I’ve never recovered from my insurance company’s decision to stop carrying a small portable meter and rarely take the new one with me as a result.  The #AccessMatters / #MyPumpMyChoice debate this spring hit home because even though I don’t use a pump, I completely understand how access to the right tools for each individual determines attitude and practice towards proper care.

It’s not just a piece of equipment.  It’s an experience, reinforcement or recreation of a mindset.  

Tools, it seems, change everything.

Mental Health and Diabetes

As Mental Health Month comes to a close I wanted to share my thoughts on what mental health has to do with diabetes management.

In short: everything.

I believe it’s fair to say that the treatment of diabetes lends itself to behaviors that mimic or lead to the development of actual mental health disorders: eating disorders, anxiety, depression, you name it.  The personal responsibility for day-to-day management combined with the often-aired doom-and-gloom warnings of dire complications, significant cost of medications and supplies, lack of social understanding, and isolation is difficult to process into positivity.  Having diabetes can feel like walking an endless road full of deadly perils alone while armed only with a map written in Sanskrit.

The irony is that if you let all those things get to you, everything gets worse.  Ignoring the disease to save your sanity can be disastrous.  That’s why we need support to keep going. 

Maybe that comes from the online diabetes community, where we can be inspired by the encouraging voices and ambitious people living with diabetes.  Maybe it’s the annual conferences and workshops on diabetes that, among other benefits, showcase just a sampling of the sheer number of people involved with diabetes in some capacity.  Maybe it comes from friends or family members who listen when we vent on a bad day, gently ask us how it’s going when we’re quiet, and laugh, eat, and spend time with us with acceptance of who we are and whatever health conditions are a part of us.  Maybe it comes from local support groups that introduce us to other people with diabetes and their stories, where we can talk about our current challenges or topics not related to diabetes at all.

Finally, we can find that support from mental health professionals, because the truth is that the totality of the above options are sometimes not enough without the foresight to sort through and connect them.  It’s like a scatter plot graph of support—you get opinions and facts here and there, but it’s more helpful to understand the trends by drawing a line. People trained in mental health can help you sort through the mess of conflicting ideas, see the bigger picture, and find the back door to circular logic.  Those thoughts that accumulate in our heads like extra glucose in our veins—you’re not doing enough, you need to try harder, you're failing.  We’re in the trenches of diabetes management every hour of every day, and it’s eye-opening to get an outside view.

But even in the 21st century the relationship between mental and physical health still struggles for validation.  Research seems to recognize it more and more, but the stigma is still prevalent.  Perhaps a holistic approach to diabetes would mean people get the care they need to achieve better outcomes, saving health care money in the long run.

I wish that when people are diagnosed with diabetes they would be referred to a therapist as well as an endocrinologist.   I wish counseling was offered as readily as visits with nutritionists and diabetes educators when numbers aren’t where they should be.

The Healthcare Experience: A Clash of Experts

Throughout my time with diabetes visits to the doctor have undeniably improved.  As a teen I used to cry and scream in the car at my mother after every consult (God bless all the parents of diabetics).  I committed all the biggest sins: made up my numbers, told any lie to appease my doctor, and pretended to commit to new plans without the slightest consideration. 

I feel like I’m in a good place now: I like my doctor, feel like I can be honest with him, and sometimes actually don’t want to wait for three months until the next visit.  Crazy, I know.  After 15 years I finally established a doctor/patient relationship that worked like it was supposed to: as a team.  The post-doc dirty martini tradition I started a couple years ago is a reward, sometimes a celebration, and rarely a somber distraction.

But there are still troubling issues I can’t figure out.

The last doctor visit was one of the best I’ve ever had.  He used words like “tight control” and said my A1C didn’t need to be lower—probably the closest I’ve ever come to a compliment from a doc.

More prevalent though were words like “safety.”    The theme of this visit seemed to be lows even though they were far outnumbered by highs, and I hadn’t had more than a few or any severe ones.  My A1C had been steady for a year, and the last result had actually gone up a smidge.  But the conversation and according medication adjustments hinged on safety and lows, in my belief, because the student/resident doctor’s “focus du jour” was on lows. (She had asked me with incredulity during our one-on-one consult if I drove.  I was, and still am, irked by that question.  Does diabetes mean you’re supposed to be relegated to taking public transit and cabs?)

The most lasting effect of this visit was an increased paranoia of going low, “cheating” more, and higher BS.

In conjunction with the talk about lows I was also gently pushed to consider a pump and/or CGM and set up a meeting with a diabetes educator to learn more about the products available, which I balked at but pretended to consider in the future, kicking the can down the road.  I am profoundly averse to change; I refuse to use the bank drive thru, still use a typewriter on occasion, and was a late adopter of smartphones. 

Both of these recommendations—the medication adjustment to err on the side of highs instead of lows, and the consideration of switching from MDI/insulin pens to a pump—are absolutely legitimate.  One hundred percent.  I just didn’t know if they were right for me.  I kept asking myself: if things are going good, why do we have to change anything?  I didn't have a problem with using pens or having the occasional low because I over-corrected from a high; why did they?

On the other hand, what if I was just being stubborn?  I challenged my reluctance to embrace what I knew could be a very positive change.  I likened the switch from multiple daily injections to a pump as the same hesitation I felt when going from pills to insulin—a change I wished I’d made sooner.  I have an inkling I’ll feel the same about a pump when I try it.  I’m trying to figure out what’s right for me and if it’s personal preference or fear that holds me back from switching.

That’s the hard place I can’t seem to escape in the doctor/patient relationship: there are two experts in the room with often differing views on the best course of treatment.  The doctor has formal education and vast knowledge on the disease, and you have an intimate understanding of your body and its day-to-day management.  It’s good for one to challenge the other with ideas, but hopefully the ending place is not so far apart.  

In the end, patients should leave with plans that are actionable and leave them empowered.  We should feel we have the agency to chew, and not just swallow, our doctor’s orders.

The Other Half of Diabetes: You Know, the Mental One

It’s not possible to measure the effect diabetes has had on me emotionally.

There’s the endless tasks of a day-to-day routine.  There’s the guilt over highs, panic over lows, and frustration over the numbers that don’t make any sense.  There’s the worrying about how much my loved ones worry about me (meta-worrying? J).  There’s the bad days where everything seems hopeless.

Mental health doesn’t get enough attention in diabetes management.  They loudly broadcast the possible side effects on your kidneys, eyes, heart—everything but your brain.  Nobody in the doctor’s office (or elsewhere) encourages you to pay the same attention to your mental health as they do your numbers.

But treating the emotional/psychological side of living with a chronic disease is just as important as keeping the numbers under control.  People with diabetes can have all the information and resources available to them, but it won’t help unless they’re willing to use them.  A doctor can prescribe medications all day, but they won’t do anything if the patient doesn’t take them, and the patient won’t take them unless they believe it matters. 

When I my A1Cs used to be in the 10s, 11s, 12s, my doctor used to always conclude that I needed to visit the diabetes educator again, as if education and not attitude was the problem.  As if I needed to see the plastic pork chop again to understand the proportion size for meat.  I knew; I just didn’t care.

Attitude is everything.  So is hope.

As a wise blogger wrote today for #DBlogWeek (I’m sorry I can’t remember who it was, I read more than a few today J), it could be worse.  It’s true.  We’re alive today, and our blessings only increase from there.

I recently started a new mental exercise, fill in the blanks style: 

_______ today as if _______ was a gift

Because it is. 

Message Monday: What I’m doing here

I’m stoked to take part in Diabetes Blog Week for the first time this year!  Thank you Karen (@KarenBittrSweet) of the Bitter Sweet Diabetes blog for doing all the work to make this a wonderful week to learn from each other and discover new D voices!  Read them here.

I set up this blog in 2014 because I had known for a long time that going it alone wasn’t working anymore.  I’ve lived with diabetes for 16 years—most of them poorly controlled, the last few well managed, and all of them alone.  I could count the people who knew about my diabetes with two hands and the people I’d personally told on one.

When I emerged from my “dark ages” of diabetes and got back on track I realized my numbers were fine, but mentally the disease was still wreaking havoc.  My A1Cs were the best they’d ever been, but I still couldn’t talk about it.  I had neglected a key part of diabetes management: the psychological need for support.

So I went where the experts, my diabetes peers, were: online. 

Finding the online community was invaluable.  I found people I immensely respected who were following their dreams, having families, and advocating to make things better for people with diabetes.  

Why online?  For one, you get to connect with, learn from, laugh and cry with people.  Two, you don’t have to wear pants or makeup while doing it. 

When I moved to a smaller town from the metro area I sadly had to say goodbye to my local diabetes support group and hadn’t been able (read: hadn’t tried) to round up people to start a group in my new area, so I went online.  Like in the support group I sat back, listened to some stories, and slowly joined in, ever appreciating the courage and resiliency of the people who made me proud instead of ashamed what made us different.

I also hoped to add my voice, because so many times while reading a book or a blog by an author with diabetes I got that feeling that screamed, “ME TOO!”  I wanted to share the hard-won lessons I’d learned from my mistakes, the facts that changed everything I felt about diabetes and still rely on daily, in hopes they are of any use to others. They are:

• You Can Do It

People living with diabetes are incredibly strong.  We practice many skills throughout the day: constant math for carb calculations and insulin doses, medical equipment troubleshooting, coping skills to deal with constant strain and unpredictability, and on and on.  We’re awesome, and we need to acknowledge that.

We’re often reminded by well-intended people, organizations, and media that dangers and dire side effects are possible with diabetes, but only in the diabetes community is it made clear that your life is more full of possibilities than it is of limitations.  When I diagnosed I thought I had to give up my dreams for the future.  Now I realize that that misconception, not diabetes, was what stood in my way.

You can do it!

• It’s Easier with Gratitude

Everyone with diabetes knows it’s no cake walk.  While the numbers go up and down they sometimes take your moods with them, and either one can go off the rails without provocation.  Diabetes is a party that never ends, even when you get tired. 

It’s expensive too.  I’ve left the pharmacy a number of times with tears in my eyes.  After indulging in self-pity for a while I try to remember that I’m incredibly blessed to have access to life-saving medicine, even if it costs me dearly. 

On days when I’m mentally stuck in muck, when I’m ready I remind myself I’m lucky to have made it this far and to have today.  I’ve found blessings are way more fun to count than carbs.

• ...And People

It’s also easier with people in your lives who support and accept you.  I used to fervently defend the belief that you could do it by yourself and didn’t need anyone to be successful at diabetes management.  I suppose in some ways that’s true, but it’s lonely, and for me at least, emotionally damaging.  I still love me some independence, but engaging with people about diabetes is empowering, educational, and inspiring.  I’m encouraged to challenge myself and do better.  It’s gotten easier to talk about it with other people in my life and support those I know who live with diabetes, which is a wonderful feeling.

Thank you for that.

Good Gravy: The Impact of Dieting

A conversation today turned to diets, and it wasn’t long before the word “guilt” came into play.

Food is a never-ending quagmire for diabetics.  We're coached on the proper foods to eat and shown plastic food to demonstrate appropriate portion sizes at the same time we are cautioned with vivid examples of the consequences that follow non-adherence to restrictions.  We think through every meal, consider every bite. 

We compare what we eat to what’s in the diet plans, consider what our specialists would say about the pizza we had for supper, and wish it was as easy as it seems to be for our extreme-health friends and people in the media.  We get referred to the dietitian over an over not because we don’t know what we should be eating, you know, all the time, but because our docs aren’t quite sure how else to change our behavior in response to high A1Cs. 

What we don’t acknowledge often enough is that it is asking a lot.  I wish we were more cognizant of our strengths: that we may not always say no to sweets or yes to exercise, but we’re human and doing the best we can while faced with unending demands.  We are asked to do what everyone should be doing—eating mindfully and focusing on healthy foods—but for the rest of our lives and without fail.  There’s a study that covered the psychological impact of a restrictive diet on otherwise healthy guys that validates that point: it takes a lot to cut back on calories, even more so in today’s food-soaked culture.

So please:

•  Give yourself more credit. 
•  Forgive yourself for past mistakes.
•  Keep trying.

They say diets fail because people cheat and then assume all is lost.  It’s not.  Keep going.

We can't let the guilt narrative repeat in our heads, the one that says you failed; you could've done better.  I’m still trying to shake an addiction to chicken nuggets, but for now I’m appreciating how far I’ve come.