Tuesday, October 30, 2012

Anatomy of a low.

He was peaceful.

His long blond eyelashes framed his round eyelids. 

Pink cheeks.  Full, soft, relaxed lips.


As I picked up his black freckled fingertip, I paused to give him one more moment of calm.

His breathing was slow and shallow.  His entire body relaxed in its slumber.


I pricked his fingertip, laying another dot on the landscape.  A bead of bright crimson blood appeared. I quickly pressed the test strip against it and watched it suck up most of the red.  I smeared away the remaining blood from his finger, wiping it on the inside pocket of my jeans.  The countdown ensued...the result was a surprise.

It is always a surprise.

59.  With insulin on board no less.

This meant a couple of things.  First, a temp basal.  I followed his pump tubing with my fingers, only to discover the pump rested securely beneath the weight of his body.  I adjusted my position.  Teetering on the edge of the mattress below him I immediately questioned my decision to let him have the top bunk.  Retrieving the pump meant moving my 8 year old son and disturbing his respite from the storm. 

I hoisted his arm towards me, and the whole of his torso followed.  Fishing blindly in the blankets I finally retrieve my prize...a blue Medtronic pump.

He stirred only slightly, turning his head to a more comfortable position.

My fingers found their familiar rhythm on the pump buttons.  It took seconds to change the settings.  I made my way down from my perch and walked purposefully towards the kitchen.

Opening up the low cupboard door, I let out a big sigh.  Which carb to pick?

Apple juice?

Fruit Snacks?



I grab an apple juice box and a banana and head back to the bunk bed.  Breaking the seal on the apple juice box, I slip in the straw and touch the end of it to L's lower lip.

"Drink, baby."

His body goes into survival mode as he anxiously grabs the box and takes a long, encouraging sip.  He pushes out the straw with his tongue and rolls over the opposite direction of me.

I rub his arm.  "L, you need to drink sweetheart."  I gently turn his head back towards me and press the straw to his lips again.

He takes a small sip and turns his head away again.  We repeat the process a good six times before I give up.  He's drank 3/4 of the box.  We'll move on to the banana.

I break off half of the banana and rub it against his full sleeping lips.  He anxiously takes a bite and chomps contentedly in his sleep.  His hands grasp the air as if trying to find another bite of the banana.  He eagerly eats what I offer him, and when I am finished he brings his hands to his face and continues to eat the imaginary banana in his hands.

I gently hold his hands to make the charade stop, and rub his forehead to relax his body and help him return to his deep sleep.

I check the other two boys and find them to be in range with no IOB.  A battle won within the war.

Gently closing the door to my room I turn to knell at my bed to pray.  I offer an earnest prayer, praying for joy.  Praying for understanding.  Praying for peace. 

And most importantly...praying for my boys safety until I check them again in a few hours.

Dream my dear boys.  Dream and escape your diabetic life.

I'll live it for you, for now.


Relish your escape while you can.

Monday, October 29, 2012


When you are having a bad time...

When you are lost and trying to find yourself...

When you need something to look forward to...

When you need to talk, but with someone who you know understands where you are coming from, because they know where you have been...

When you need a friend...

When you are struggling to sleep...

When you're stuck on pause...

When blood sugars reign and routine saves the day...

When you are looking for your smile...

There is no better cure than a visit from people far away.

People who share your heart.

People who love you despite your imperfections.

People who in many ways are your "same."

This last weekend Wendy from Candy Hearts, Kris from My Sugar Bugs, and Joanne from Death of a Pancreas flew in to see me and hang with my local D Mama friends, April, mom of 1 Type 1 son, and Susan, who has two boys with T1.

My heart is full.

If only for a weekend, my spirit was replenished.

If you are alone, find someone who is same.

And if you find that someone on the internet, don't think that the relationship has any less value than the ones that are right in front of you.

Because these woman who came to town embodied everything true friends are.  Our friendship was a real as the sunset.  As real as the ocean.  As real as the pie we relished.

The online community has once again saved me.  What would I do without you?

I am blessed.  Despite all the hurt, the grief and the confusion...

I am blessed.

Thank you girls for coming to my rescue. 

I hope one day to return the favor.

Tuesday, October 23, 2012

It's theirs.

I've always thought of diabetes as mine.  

No, I don't have diabetes per se, but I live it...and I take full responsibility for it times three.

My head is in the game 24/7.  I put so much work into diabetes...the diabetes hamster wheel in my brain is still running full tilt after all these years.  But lately it has become very clear that my boys have diabetes hamster wheels too, and they too have theirs running at a good clip.

I'm not super happy about that.

I always ran my hamster wheel so they wouldn't have to run theirs.  But as they have gotten older, they have begun to give their wheels more steam, and in effect, given diabetes more room in their brain for processing.

They are taking over their care slowly...but absolutely, surely.

The other day I was going to be out of town, in a meeting.  As a result, I wasn't going to be available for the boys calls during the day.  My sister in law, my back up pancreas, was subbing all day and wasn't able to field their calls either.  I spoke to the boys about it, and they all confidently assured me they knew exactly what to do.  They knew how many carbs to bolus for snack and lunch, and when to give a free snack if their blood sugar was low.  They knew what to eat for each specific low number, and they knew if they were high that they needed to bolus.

That day my boys didn't call me once, and each and every one did everything, perfectly, all on their own.

On the way home from school I praised them for their awesomeness, for which J replied, "What do you expect Mom?  This morning at breakfast you prepared us for every situation, including Armageddon." 

Then my baby L piped in, "Mom, we totally got this.  We don't even need to call you anymore."

Brain.  Explosion.

"No sweetheart, you need to call me.  Just in case."

It was then I realized I was having them call me every day for MY peace of mind.  Could they really do this without always checking in with me?  That would require me slowing down my hamster wheel.  It hasn't slowed down for fourteen years...is that even doable?

A couple nights ago I changed the insulin sensitivity on the two littles.  I checked them hourly for a good part of the night, making sure my changes weren't too strong.  L, my littlest, began to go low.  As I fed him a snack like a mother bird to her young, I realized that my boys were going to be on their own someday, and that someday was coming quickly. 

Who will feed them then?

I've always known one day I would set them free, but the thought overwhelmed me in that moment.  I freely run my hamster wheel for my boys.  Knowing that one day there will be steam coming out of their ears all the time?

I hate the thought. 

It is such a large stone to carry around. 

So much responsibility.

But here I am, knowing that they will willingly take all the responsibility one day...and they'll somehow be ok.

They will be ok.

We have come so far in this past decade.  Change is life's way of saying, "keep moving."

And I'm moving...even though I would rather freeze time and work through my own demons.

Like I said, I knew the day would come.  It just hurts knowing I can't shield them any longer.  They've passed their diabetes permit tests, I need to let go and let them drive...full on knowing there are going to be small dents and even big accidents along the way.  The hard truth is, they can't become able drivers without having a turn at the wheel. 

Good thing I'm a brilliant backseat driver.

Monday, October 22, 2012

The Most Annoying Person I have Learned to Love...

The day I lost my car... I became an avid pedestrian. Every local place became THE place to go for any goods and services. I really didn't want to lose my car, but the many months of being sick and at home, on leave from work and with no paycheck, left me struggling to make ends meet -- and well, car payments were not a priority. I let the car go.

Then shortly thereafter, I was diagnosed with type 2 diabetes. November 17th, 2009.

I thus began to get acquainted with a certain place a lot more often than I would have liked. A certain pharmacy. God, I hate pharmacies. I hate their smell, I hate their lights, I hate the waiting... and the lectures you get every time you get your prescription refilled as if you hadn't heard them before for like the billionth time. I've also never cared for the chit-chat. You know, the chit-chat cashiers always give you when you're ready to go. I'm sort of this anti-social who just wants to grab the crap she needs, and be on her way. No eye contact, no talking... bah humbug.

But, alas, there was Sally. (Sally is not her real name.)

Sally loves and loves to talk. Sally is very social. Sally always has something to say, and engages well with customers. Sally loves talking a little too much with her customers. I think she may have even gotten a bit in trouble for it before. It's not easy to leave Sally's side, by the register. Heck, she sometimes even comes over to you while you're in the isle to talk to you while you shop! She's always full of stories -- about the weather, about how things used to be in Ames, about her cat, about how things used to be in her hometown, about what's on sale, about what the best and most addicting snacks are, about her younger years when she used to have a career in social work, etc. Needless to say, Sally is very annoying.

Some days, when Rod and I used to go into the pharmacy together, we'd find ways to try and avoid Sally -- especially if we were in a hurry. Sometimes, we'd just want to shop in peace. Sometimes, we might have even gone to a different place altogether. But... in Iowa, politeness reigns. If we failed avoiding her, we'd still listen to Sally. Conversation began to get so involved... that now we'd be telling Sally our own woes.

Sally knew when I had no job or when I was underemployed with few hours, or when we were sick; when we had many, many struggles. Sally has often given us career advice, and even advocated for us.

In 2010, a devastating flood of epic proportions (the last of it's kind seen 500 years ago), hit Iowa. It affected the resources and properties of many folk. Our town lost a lot of water mains and pipes, and the water supply became contaminated. The advice was: purchase water, and if you're poor, please go to these local water dispensing sites we've set up. The problem was the water dispensing sites were SO far away, we couldn't get to them. Buses weren't going by certain areas either, because of flooding. Rod and I bought what little water we could, but then had no money left over for actual food. (And you know, with type 2 diabetes that's being treated with only diet, that's a rough ride... you have to seriously mind your carbohydrate consumption and you just can't survive on ramen noodles like someone else with a working pancreas could.)

Local Target store's parking lot, during the floods of 2010

I don't recall why we were at the pharmacy that day... but Sally asked about our day, and how we were faring with the floods, and well... we told her our woes, as had become usual. Sally, as it turns out, had been worried about us. Sally took us to the Red Cross -- Sally got us more water, and Sally took us to the supermarket and bought us food. Sally had endeared herself to us. Her quirky little self got into our hearts. She still, would sometimes, annoy the crap out of us... but our appreciation for her glossed over all that stuff. The stuff of being ourselves, squeaky wheels and all.

I don't believe in a god... and I don't believe that 'god' is love. I believe that LOVE is God. I believe WE are 'God' to one another, when we are in need, and our humanity calls... and we respond with love. And that day, when we needed her most, Sally WAS 'God.' Sally helped us see another healthy tomorrow... and not struggle for today. Sally was also... our advocate. Sally KNEW we had type 2 diabetes... Sally RESPONDED to those needs. (WE can be patient advocates to ANYONE with a chronic illness, with their needs, ANY given day of the week. The opportunities are everywhere. Look for them. THIS is also part of advocacy. Being the glue that connects everything... when all else has failed.) 

Now... about a few weeks ago, I started noticing something wrong in my daily trips to the pharmacy. I really didn't see Sally as often, anymore, and she didn't seem as chatty as her usual self, anymore either. She seemed tired, and I thought to myself, "She looks like she's aging pretty fast; she looks a lot older than she was a month ago." (I didn't say anything.) I really had begun to MISS my daily encounters with Sally, and that daily inconvenience of having to stop and talk to her... while in a hurry to God knows where. "Maybe she's just cut back on hours," I had wondered... or maybe she's got a second job...  or maybe she was spending more time with visiting family. (She always spoke fondly of family far away -- or with annoyance -- depending on who the family member was. lol)

But today, walking home from work, I heard a voice yelling at me from a block behind "Why are you walking in such a hurry?! I can't catch up with you!" I stopped, and turned around. I saw it was Sally... and I got a little annoyed that I had to stop, and wait for her... It had been a pretty tiring day for me, and my carpal tunnel was worse for the wear. Sally lives a block from where I live, and she wanted to chat while we walked. Fine, I could entertain this.

She asked me about ME, first. How I was doing... how Rod was doing. How we were coping along with life. She pointed to her new hair cut... and how she wanted it shorter, for it's getting so fine these days, it's harder to style. I don't really care, but I politely listen anyway... (Ever the eternal Oscar the Grouch.) Then she gently eases into the topic... The chemotherapy has been really hard... and Sally can't manage it anymore. I am one of the special, chosen people in her world, that she has decided to tell... and no one else. Sally only has 4 months left to live.

I politely listen... offer my company... offer to spend time with her when she's stir-crazy at home, if anything. Sally can't drive anymore, which is just the same... because honestly, I still don't have a car. We can ride the bus together, she says. It'll be good. It'll be fun.

I offer to walk her all the way to her place, but she declines. I give her my cell phone number. We say our goodbyes, and I go home. I reach the bathroom, and undress. I break down and cry, and cry... and cry...

I don't know Sally's real name. I've never asked.

Wednesday, October 17, 2012

The lie.

I see it all the time on Facebook.

I live with the mantra all day long in my own reality.

Oh yeah, I say it to myself.

And yeah, I know you say it to yourself, too.

As parents, as humans, we are brilliant at a lot of things, but one thing we are most brilliant at is finding fault with ourselves.

It all hinges on one giant lie.  And it is such a good lie that we often believe it.  We let it eat at us, and some days we even let it define us.

What are the words that have so much power?

"I'm not good enough."

"I fall short."

"Epic fail."

Do we all have areas to work on?  Absolutely.  No one is perfect.  Me?  <----- far from perfect.

But I think we let that little notion work itself into our swelly brains all too often.   For myself, the thoughthas crawled in, made its nest and settled down to hibernate for the winter.

How do I wake the beast and scurry it out of my head?  I can only imagine I need to start by saying to the universe, "I AM enough."

Just because I'm not perfect, doesn't mean I don't try my best.

Just because I fail sometimes, doesn't mean it doesn't kill me every time I let my child down.

Unfortunately for me...and most of you who read this blog...Diabetes only exasperates the problem. There are so many opportunities to fail with this disease.  Let me see...three boys with Type 1 Diabetes X 8 blood sugar tests a day...that equals 24 opportunities for failure a day.

And we all know that is the tip of the iceberg. 

Lately, especially, I'm having a hard time seeing my value.  Ryan was always my cheerleader.  When I was down, he was the one that lifted me up.  He wore a magical pair of glasses that saw me in a near perfect state.  My extra pounds?  He didn't see them.  My little rants?  He thought they were hilarious.  Do I really need validation to function every day?  No...I'm functioning.  Don't get me wrong, I'm not asking for accolades...I'm just coming to the realization that I need to find a way to love myself.  Ryan did the loving for me.  His love was what got me through.  Now I need to start doing the believing on my own behalf, and that is turning out to be a bit more complicated than I thought.

It's true.  Sometimes I wonder if I'm enough for the boys.

But as I look around at a world of imperfect people, I realize I love so many people despite their imperfections.  No one is perfect, and everyone that tries their best is enough for their family, and enough for me.  I can be enough for mine...


I AM enough for mine.

Believing there is more to me than what I see in the mirror is a start.  Believing I'm only scratching the surface of my potential is the next step.

I need to close my drawers full of doubts.  I need to tidy up my brain cluttered with self deprecating mantras.  I need to clean house.

I turned in my first job application/resume packet yesterday.  As I laid my packet on the pile, I was surprised at my immediate sense of defeat.  Jumping back into the work force, putting myself out there...it going to be a rough road.  It is not going to help anything if I don't have self confidence.  Do I think I can do the job?  Absolutely!  It is the selling myself that makes me itch all over.

The core of my confidence volcano has been dormant.  It is time to light the fire...find my confidence, and own it.  Maybe it won't be a super nova right off the bat, but my points of light can put on quite a show.  I need to allow the world see.

Accepting who I am.  (Working on myself...but accepting that I am unique and have something to offer...) THAT is my next adventure.

Today I take that first step.

"I'm good enough, I'm smart enough, and doggone it...people like me!" ~ Stuart Smalley

Friday, October 12, 2012

Alice in Diabetesland


I was Alice.  I was naive, and curious.  When I ventured towards the bedroom I had no idea what would be on the other side of the monitor.  I sat comfortably on B's bedside and stroked his cheek gently.  Oh how I wish I could know peace like that.  What a wonderful adventure his life is at 10 years old.  I envied his ablity to sleep so soundly.  Growing curiouser and curiouser I brought the blood sugar monitor to his sweet hand and squeezed out the precious blood from his finger tip.


In an instant, I fell directly down the rabbit hole.


I was the rabbit.  Chasing the number down, never stopping to think straight.  Rushing.  Worried.  Insulin is what he needed.  Insulin!  I checked his blood sugar.  591.  Progress!  I'm going in the right direction!  I bolused nimbly as that is what I do best!  Rush rush rush.  It's late!  It's late!  I check the clock.  I'm going to be late for my sleep.


I was a guard.  Just one more check in the deck of cards this game diabetes has to throw at me.  I will do my duty and check!  I will put off sleep to make sure he is safe.  Diabetes is my master.  I will obey.  I dutifully check his sugar.  440.  Bolus again.  I know the protocol.


I was the Red Queen.  I'd fallen asleep and my alarm was going off.  I rage snooze three times.  I'm angry.  A queen shouldn't have to lose sleep!  I throw my covers off in regal fashion and make my way defiantly to B's bedside.  The meter says 380.  I bolus and immediately I am met with heresy!   "No delivery."  How dare that pump defy me!  I will bolus again, and this time it will LISTEN!  But yet again it dares to mock me with its "No delivery!" 


I burst to the supply closet and nimbly grab a new quick set.  It is put on efficiently, as stabbing children with needles is second nature to me now.  I'm numb from it all.  A queen does what she has to do and doesn't look back.  Hard decisions must be made.  I rage bolus.  I am wide awake so I take a Tylenol PM.  I will sleep now.  I am the queen here, I will not allow diabetes to take away my sleep!


I am the caterpillar.  My sleeping pill has made me a bit woozy.  My alarm goes off...I can't find the snooze.  I'm high on sleeping agents and like a drunkard make my way to B.  He is 373.  Almost what he was an hour before.  I dreamily bolus and add a bit for good measure.  I don't remember how I got back to bed.  But I remember being confident in my bolusing decision.


I am the Mad Hatter.  I'm not all there.  I grin vivaciously at the alarm clock.  I clank down the hall, bumping doors open...I don't care who I wake.  Come to the party!  We are bolusing!  Have some tea with me as we check B's sugar AGAIN!  I live my life at this table, and it is where my crazy shines!  I flip the overhead light on in the boys bedroom.  So what if they wake up.  I'm up!  Let's do this thing!  It takes me some time to figure the meter out.  I put the strip in backwards and giggle a little bit.  277.  FINALLY some progress.  The pump says to give a bit more insulin.  I grin and do as I am told.  My brain is made up of wet noodles at this point.  I shrug hoping I did the right thing, and fall face first back into bed.  I'm not in my right mind.  The next alarm will be 6:30am when I must wake up for the day.  I take off my nurses hat and dive into a vivid drug induced dreamland.


It is over.  Was it all a dream?  B's blood sugar is 112.  Did I imagine the crazy?  From the corner of my eye I see the aftermath on B's dresser from the night before.  Bloody test strips.  Needles, a box of quick sets...insulin.

It was all real.  The wonderland of craziness and real life merged together in my conscience and created my reality once more.

What character am I now? 

I am all of them. 

I am a D Mother. 

I am me.

And most of all...I am tired.

Thursday, October 11, 2012

What Patients Want From Their Clinicians...

I think a lot about patients' rights, and expectations; about what the most ideal medical care should look like for a person with diabetes. I've often thought of putting together a post regarding these thoughts, but I never quite had a catalyst to really help me organize together all the elements.

The time I spent at Medicine X really got me thinking more in that direction, and contextualizing my vision. Some of these might seem like basic tenets, but others are quite 'revolutionary.'

When I advocate, I feel I usually do so, subconsciously, from some of these starting points... and I suppose they could apply to just about any other health condition. These are what patients want from their clinicians:

To Be Afforded Humanity... With:

  • Respect and Freedom: As a partner in a journey of self discovery. An equal who is allowed the freedom to disagree, respectfully, and to make a different (informed) choice from what the provider would have chosen. Not as a 'civilian' kept under the inflexible 'regime' of the provider, nor as a subordinate, ignorant layperson, or petulant child.
  • Dignity and empathy: As potential mothers, fathers, daughters, sons, sisters, brothers, significant others; people with potential hopes and dreams, fears and anxieties, just like them. Not as cold hardware to be tested, and prodded.
  • Encouragement: As persons in need of perspective, and hope, from those who have the positive power to guide us into better health. Not recrimination, or scolding, whenever we 'fail' at meeting a goal. 
  • Acknowledgement: As partners deserving of their full attention, concern, praise or recognition. Not ignored when we present our health concerns, or when we reach an important milestone in care, or when we work hard to achieve goals. It is, sometimes, incredibly hard to jump through some of the hoops and obstacle courses which you demand of us... so please, give praise and positive feedback when we achieve them! 

To Be Afforded Effective Communication... With:  

  • Patient Education: As partners fully capable of learning, understanding, and being challenged and tested, we deserve to be taught about our health conditions, and how to manage them, either by our clinicians, or by referral to those who can properly educate us and guide us into better health choices. There will be levels of education which each patient can handle, but we can all handle something. Not being told 'you have x condition,' and sent on our own, with nothing else to cope or fight back.
  • Access to our data: As patients, and persons responsible for intimately managing a health condition, we should be allowed to know where we stand, with truth and honesty. Not to be left in the dark about one's condition, and progress... with only the provider being privy to the facts. 
  • Proper Feedback: As patients needing guidance, at times when we may not feel safe making our own decisions, by returning our calls, e-mails, or messages, promptly. Not by relegating our most important concerns to other, less informed health assistants or personnel, nor by ignoring our efforts to contact you. If you openly make yourself available to patients, please honor that commitment.
  • The whole story: As partners and patients who need ALL the information (and proper diagnostic testing) when it comes to choices for treatments, medications, and tools. Not being limited to a clinician's predilections, or the predilections of the company that might be paying them to promote certain tests, procedures, drugs, or tools. [We will gladly listen to your predilections (and sometimes choose them), because after all -- you are the medical professionals -- but you must understand that we are the experts at living with our condition, and need ALL the variables to be able to make informed decisions that might impact the fate of our future health, and our families.] 

To Be Afforded Quality Care... With: 

  • Continuous Education:  As patients receiving exclusive care from a clinician or provider, we expect that they keep on top of new emerging technologies, new research, new data, and new approaches to managing illness. Not to take the minimal continuous education courses, and keep practicing on potentially outdated methods from when they first graduated medical school, which could fail to improve a health condition, or even make it worse.
  • Embracing the researching patient: As partners, we expect to be embraced with respect when bringing in new data that can be studied, together, as a team. Not being chided for doing 'online research.' Medical research is growing by leaps and bounds, so it would be impossible for a provider to keep on top of all the information on their own... so why not partner up? We could solve a puzzle together, rather than 'against' each other. This is not about who has the diploma; it's about who ultimately gets to live with the decisions.
  • Referrals to Specialists: As humans who know and understand that not everyone has all the answers and information to everything, and that sometimes it's best to embrace those who may provide additional insight or more specialized care. Not negating, out of ego or greed, the chance to expand one's medical team and "think tank," in order to find positive answers to puzzling health problems. 
  • Committed Advocacy: As advocates for one another, by being our strong voice to health insurance companies, government, and especially the media, or those who might be ignorant to our condition, and thus seek to curtail our needs, and cut down our most essential and basic of services, remaining true to the Hippocratic Oath. Not by remaining silent to our needs, or cowering to the all-mighty dollar, because a businessman, with no medical knowledge, coerced you. 

For as many things as can be said about the healthcare field, and as much as times may change, I don't feel many are more important than these basic pillars, rights, and expectations. These are very essential, basic principles that we can all embrace and pursue in our futures. Often, we as patients can be difficult as well... and there should be some mutual expectations of cooperation, trust, and respect as "partners" and not subjugates. As the "Healthcare Street" is usually kept as a "One Way" road, I throw these out there as a sort of Patient's Manifesto of Rights and Expectations. 

Diabetes is a Sailboat

14 years ago I was told to put my child in a sailboat, alone. He was to journey out to sea and I was not allowed to escort him.

You can imagine the fight I put up. I yelled and pleaded. I dropped to my knees and bargained with God. I had a fit. But alas, my flailing was fruitless...he was literally taken out of my arms and thrown into the boat. I was given no choice. He had Type 1 Diabetes and there was no going back. He could not stay on shore. He could not live without the boat...it was part of him now.

I watched the boat go out to sea and I cried anguished crocodile tears. The world seemed to be in constant motion, while I was stuck on pause...mourning his separation from the shore.

The viciousness of the waves were horrifying.

My child was helpless.

I was helpless.

I would have done anything to be on that boat. I willed his diabetes to enter my body so I could switch places with him. But apparently, that isn't how it works.


I was given two tools to help my son. A telescope and limited control over the weather.

I have vigilantly had my eye set to that telescope for 14 years. There have been long stretches when I wouldn't leave the scope. I wouldn't shower. I wouldn't eat.

I have had comments throughout the years that my attention would be better placed somewhere other than the boat.

What they don't understand is that my child is on that boat. My heart. My soul. How could I ever walk away from my scope?

My one advantage is, with insulin and food, I can sometimes control the weather. I can smooth the waves and bring him close to shore. On those days it almost feels he is on land with me. On those days we dance together and laugh, and joke that the ocean has nothing on us.

But other days the storms come in out of nowhere. The black clouds close in and the numbers ebb and flow with the powerful tide. On those days, I watch my son ride those waves and I spend the day at my scope...determined to change the color of the clouds. If his boat capsized...I don't know what I would do.

Sure...he is above water. Sure...he is surviving. But on the stormier days his sea sickness weighs so heavy on my shoulders, I'm sure I am going to run out of strength, and one day drown in despair myself.

My son has grown up on his boat. I am in awe every day of his constant vigilance, and his nimble control of his craft. He is an able captain now. He can hoist the sail, he can watch for the storm clouds. He can batten down the hatches. He can steer that boat away from immediate danger...he FEELS the sea. His intuition is inspiring.

Three boats I have set out to sea. It does not get easier. Every boat I have released has killed me a little bit inside. I live my life on the shore waiting for storms, hoping for sun...watching each and every wave.

It is exhausting. It is tedious.

But on the summerlike days, when the boys drift closer to our reality...they hitch their boats together. With their boats abreast, we can sit together and watch the sun set on the horizon and know that we can do this. We see the other boats adrift in the ocean, and their resolve and optimism lifts our spirits.

A bit ironic that the most amazing views...the most amazing perspectives...can be seen only from a boat.

No, it isn't easy. It isn't fair. The children with their feet on land are behind us, ever present...running around with no cares.

They don't have an entire craft to navigate. If a storm comes in they can simply get in their cars and their parents can drive them home. They are not required to have constant courage or patience. They are not required to grow up quickly to take on captaining their own ship.

They are free to run.

Freedom. A gift my boys yearn for.

Freedom from navigating. Freedom from weather.

Diabetes is a sailboat.

Adrift in the sea.

The boats rock gently tonight. I can see my sons at the helms. Their silhouettes against the nights sky.

Each one, every bit a hero.

We pray that one day they may set their feet on the sandy shore and rest.

That one day they may find respite from their journey.

Type 1 Diabetes is a sailboat.

And 40 new sailboats take off from the shore, every day.

They aren't just boats underway with numbers in their wake...they are families lives, changed forever.

They are significant.

Every single sailboat is significant.

And every captain, an inspiration.

(I felt the need to revisit this post from July 2011.  Last night at the midnight check, the waves were smooth for the first time in awhile.  I looked at their sleeping faces and thought of all the storms we have weathered lately.  My boys are my heroes.  All four of them.)

Monday, October 8, 2012

Finding My True Hope: My Adventures at Stanford Medicine X

This is the fourth of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Patients learn to develop a strong voice. We have to... There are a lot of other voices, and interests, competing to be heard, and some, outright wanting to talk right over us. So, often times, a patient rises up above... and becomes an advocate: one who learns, and becomes an expert in their condition, as well as teaches others to self empower themselves, and keep going. As a part of that, it follows that the advocate will also seek to change their environment, change minds, and change the system as a whole. In that way, we're like a computer virus, really. We will never stop until we've re-written it all.  

Despite this same mission, advocacy comes with different voices, and we all get to choose that voice. I suppose... 

Though, when you have lost someone you love to chronic illness, I don't think you have much of a choice in what your voice will be. If you've worn gloves to help prevent infection for your father's in-home dialysis treatments... then, well... you no longer wear gloves much, if at all, when it comes to advocating for his needs, or the needs of someone else to follow in his journey. 

This might make us seem a little emotional, a little "Type A personality," a little pushy, a little obsessed, and perhaps... a little ANGRY. 

So, I don't want my dear readers to assume the worst from my Day 2, at Medicine X, either about myself, or about the conference. The reality is that my exchange on Day 2 is what makes Medicine X so unique, and wonderful, and freeing. Why, you ask? Why is someone talking down at me such a freeing thing? 

Well, the answer should be self evident: because I was allowed to talk back. Yes, I, THE patient... was allowed to have a conversation, to contest or refute, and to make a point. And for as much as I love other conferences, you're not going to find that at a TED talk. 

You don't need anyone to talk AT you -- you're an adult, and not a child. You're a being with as much critical thinking, and life experience, as anyone else holding a different type of educational background, or expertise. Honestly, there wouldn't even be any medicine without you... for YOU are the patient. And throughout MedX there were all sorts of folks expressing their various concerns, and input -- from Susannah Fox's now famous 'That's my research, and that's not how I chose to interpret my data,' to your regular advocate questioning potential 'overquantification' and privacy issues, to well, my now famous 'comment.' 

Medicine X is not a place for people to be 'perfect' -- everyone will have their biases, or their ignorance, or their differences of opinion or data interpretation. This is in no way a 'bad' reflection of the people who organize Medicine X, or of any of the participants, speakers, or guests, really. Nor is it a bad thing, at all. Medicine X is a place to have a CONVERSATION... and conversations bring outcomes, and education. Which brings me to... 

Day 3: The Doctors of Tomorrow... Today 

"Physicians are no longer the sole gatekeepers of validated health information ... The role of providers is evolving almost as quickly as technology. Value is no longer just knowing the right answers, but asking the right questions. And specifically, asking the right questions at the right time, the right place, to get the desired outcomes ... We are witnessing the evolution of value from content to context." -- Bassam Kadry, MD, Kadry Foundation, Stanford University, on the process and the whys of looking for new startups, and emerging technologies.

One of the most precious things I took away from Medicine X is that there are also other types of advocates: clinician advocates. The people who provide you with medical care, also tired of the state of affairs of their industry, and wanting to change their OWN landscape. Clinicians who understand that they are often, patients themselves. Or moms. Or voices for change, seeking to change the minds and views of their fellow peers, and embrace the new face of medical care. Doctors who understand that they no longer hold a monopoly on medical data.
Yes, that's right. 

Just like you and I... people who want to see change happen in how medical data is dealt with, how people are handled, how we all benefit from the system, and how well we all LEARN and make decisions together -- there are many, many, invested clinicians out there, who want to work hard to change the system. (And many of them work in boards, and foundations, who make conferences such as Medicine X happen.)

In the beginning, I thought "well, Medicine X is a conference about technology, and the bettering of medicine and patient outreach through technology..." but I was wrong. You see, it isn't just that... It's a lot more than that. Medicine X is a REAL coming together of PEOPLE: patients, clinicians, researchers, academicians, innovators, programmers and silicon valley entrepreneurs, investors, etc. People with various 'hats,' who make a giant think tank (and without all the noise in the middle from all the bureaucratic machines), and embracing their most creative self, seek to DO something about the problems... WITH technology. That's all it is. Thinking outside the box, with the new tools we have... and some cool music, and lights. :-) 

And it was so much fun! 

There were many sessions, some very hands on, and some going on at the same time in separate rooms, and I kind of wish I could have cloned myself to go to all of them. But hey, that's the beauty of technology, right? I learned about some of them through people's tweets, or through people's blogs... or through videos. Couldn't have done that as efficiently in 2002. 

My mind was refreshed and renewed with the beauty of other people's minds, and ideas... and it will be, for years to come, thanks to livestream. (If you haven't caught on, I have linked every "Day" subheading" to it's corresponding livestream link.) 

I love an analogy put forth by Esther Dyson (who spoke to me, and about my little comment, at Med X --  and it was quite an honor, really...) in which she discusses the breaking up of AT&T by the government. In essence, when AT&T was broken up, it really didn't fix the problem -- it only created a handful of other telephone companies, with (arguably) similar power. Instead, what really brought these companies to their knees was, what? NEW TECHNOLOGY. The wireless phone. Or otherwise, changing the rules. You take away their monopoly of data, and you get to redo the system. 

It'll be much the same with the medical industry. When we get together, and embrace the tools before us -- and how we tackle medical care and patient approaches -- we will get to rebuild that WHOLE puzzle, the way we wanted to from the beginning. The future is now, really. It's inevitable. 

... And in case you want to know, the speaker who I addressed with my little 'comment' was very receptive, and very polite. I am sure he will choose his methods more wisely, next time. (No, he was not an evil troll. Please forgive him. I have.) 

So... if I had to sum up my time at Med X, I could tell you that: 
  • I was a lost villager... 
  • Who found herself accepted for her self quantification... 
  • And hence, found her patient voice and courage, 
  • Leading to a true HOPE in her advocacy efforts.
I will try to share more, as I have time, on all the various technologies I learned. Maybe even arm wrestle someone into a guest blog post, or something. :-) But I want to personally thank everyone... for taking the time to read through my various blog posts, and ramblings. My 'life at Med X observations,' if you would.  

I may be the angry woman who writes about diabetes, but you folks make me the advocate that I am. I am indebted to all of you, and the wonderful people who gave me the opportunity of a lifetime to be a part of something big, at an institution such as Stanford University.

I will not... not ever... not soon. Never forget. ;-) 

The ten year quandary

I read an article a couple weeks ago that Houston's MD Anderson's Cancer center announced they are going to shoot for the moon and attempt to cure eight types of cancer within the next ten years.

One of those types of cancer is Melanoma. 

How do I feel about this?

Surprisingly conflicted.

On the one hand, WOW!  Good for them for going for the gold!  What a huge blessing it would be to know not another family would need to suffer like ours.  What an amazing gift to know that in the future my children wouldn't have to fear such a disease!  It is such a hopeful statement.  Bold and exciting!  Can you imagine?  I certainly can!

Then there is this tiny selfish, angry part of me that says, "What the what????  Why couldn't they have announced this ten years ago?"  I feel like an awful person thinking this way.  What's happened has happened...but if they think they can cure it, why has it taken so long for eyes to be opened?  If they think they actually can achieve this...why now?  Why not before?  Why not for my Ryan?

We can't go back in time.

I know that.

Then there is the D Mama bear inside me roaring at the idea of telling others, "Ten years."

When J was diagnosed with diabetes we were told there would be a cure within ten years.  We were newbies then...and a bit naive I suppose.  We honestly believed them, and left the office thinking Our Diabetic Life would be a temporary thing...

Seven years later when L was diagnosed we were told the same thing.  "Ten years and there will be a cure for sure.  They are getting closer!"

And a year later when another nurse tried to tell us the same phrase after B was diagnosed I stopped her and made her promise never to say those words again.


I feel like I'm in the twilight zone.  Ten years from any point we are currently at, there will be a cure for everything.  Impossible, right?  We'll never get to that point because the time is always determined from this exact point.  And this exact point changes minute by minute.

Curing Melanoma in a ten year time frame?  Damn, I'm glad they are trying.

But I hate that I lack faith in the outcome.

I hope I'm proven wrong.  I PRAY I am proven wrong.  PROVE ME WRONG MD ANDERSON CANCER CENTER!  Please!

It's about time this world started curing things.  It's about time we stopped putting band aids on the problems and patting ourselves on the back for putting off the solution. 

Maybe a cure will come for these deadly cancers because the people who have them don't live long.  The money made off them is limited.  I don't know.  I know of people who believe that pharma is making millions off Diabetes, and is hurting our cause for a cure by blocking any progress towards it.

Yeah...maybe I'm one of the people that feels that way too...sometimes.

Can progress really be made on any disease?  Has society really cured a disease yet?

Regardless of my hesitation.  Regardless of my sadness.  Regardless of my tainted view of miraculous future cures...

Regardless of everything, I'm glad they are trying.  And I support them 100% in their noble efforts.

Even if it is too late for Ryan, maybe it won't be too late for someone else I love.  <---- and that's worth putting all my conflictions asides, and allowing myself to once again feel a pang of HOPE inside my heart.

Sunday, October 7, 2012

Finding My Patient Voice: My Adventures At Stanford Medicine X

This is the third of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Friday had come and gone with a massive amount of information, stories, and knew technologies featured in a relatively small amount of time. To be honest, I'm still dissecting a lot of the information, and I'm grateful for the live-streams, and videos, which I can always use as a reference.

I'm also grateful for the dignity of finding one's bearings. Once we find those bearings, we regain a certain sense of confidence in ourselves, and situations, without which we may falter momentarily.  Finding my bearings came in the form of chit chatting throughout the day with others (encouraged by having to QR scan badges, and introduce ourselves), and by way of having dinner every evening with new friends. It was the validation I needed, really. A validation that comes from others who aren't just similar to you, in their struggles, but who also laugh at your jokes, and are probably just as irreverent as you! I made some great friendships I won't soon forget. I felt human... an empowered adult, in her own right, without pretense, instead of an awkward child, sitting at the grown-up table.

Day 2:  Patient Dignity

Okay, so they didn't call it that. They just called it "Day 2." But "Day 2" was ALL about patient dignity, in my mind... or well, the indignities patients have had to suffer for the sake of getting much needed medical treatment for themselves, and their loved ones. 

Being a patient with chronic illness often leaves you feeling like cattle, simply going through a 'machine' where you have no face, no back story... no humanity: just a being going through the system, the motions, the things put in place to achieve an outcome, a quota, or a financial goal, etc. And oftentimes, it matters not how well off you are, who you are, how famous you are... to be reduced to nothing. 

Meet some of the folks who fought back:

Michael Graves

Mr. Graves is an American architect, and Professor of Architecture at Princeton. You might not immediately know who he is, but he's more often known and identified for his creative designs for Target stores. I love Michael Graves. Heck, I have an alarm clock by him that I *adore.* I've had that thing for 10 years. It's easy to program, very intuitive, and with two separate alarms, it has allowed me to keep ever changing, weird sleep schedules. Best of all, it's beautiful to behold. 

But I digress... Michael Graves is an immensely talented human being. A designer, and an artist, in his own right. An optimist, and humorist. He was a person going about his life when chronic illness came striking at his door... In 2003, he became ill with a virus that spread to his spine, and left him paralyzed from the waist down. He recounts his initial symptoms, and his horrific experiences at the hospitals where he received emergency, and therapeutic services. It was his very traumatic, and dehumanizing experiences that gave him insight and a new passion to redesign the hospital room, and create bacterial resistant, patient-intuitive furniture... I could recount his story, but I don't think I'd do it enough justice... so you owe yourself the 40 minutes or so to watch his video below, complete with pictures of some of these rooms, and the work he's doing.

Most notably, you can detect a hint of sadness in Graves' account -- the sort of sadness of the self realization of not just his own vulnerability, of being at the mercy of someone else... and with little resources to make it through the day, but of others' vulnerabilities, as well. At one point, Mr. Graves recounts how CBS was interviewing him when he was in one of the therapy rooms, and they asked him "Michael, what do you think of this room?" to which he replied "It's far too ugly for me to die here." 

Regina Holliday

I can't watch her story without crying. I just can't. Probably one of the most passionate speakers at Medicine X, Regina Holliday is just a beautiful soul. Regina is Artist in Residence for Stanford Medicine X, and she uses her paintings to express the reality of the health care system, the need for clarity, communication, and accessibility to data and patient records, as well as the injustices and indignities suffered by the patient... including her own grieving process, and her own indignities. Regina speaks creatively, and passionately about patient's rights, and healthcare reform, and you can see she has invested much of herself in this fight through her national Walking Gallery project.

"You must look at the human face to determine what to do next ... "You must have patient participation in data and access, or you will never get the true story of care."

We must couple people's data with their stories, and never forget, or give up.

Most telling is the story of Regina pleading with her husband's doctor for his data, wanting desperately to know what was wrong with him... but being belittled, and dehumanized for doing so. "I don't like people that research online ... I'm the one with the medical degree." The picture she painted for that one event reflects a thousand emotions of one moment in time... a thousand emotions of desperation, trepidation, and ego. A thousand emotions we have probably felt, as patients, at one moment or another... but like scolded children, may feel a certain pang of shame to recount.

How do we change this reality? We write letters, we speak up, we stand up... we get engaged. We don't need partnership FOR, but WITH.

You must take us as we are... for we will never, ever keep quiet. We will blog it, twitter it, shout it from the rooftops... 

The Crux of Patient Centered Emerging Technologies

Interspersed with all these patient stories, Medicine X had also presented a diverse array of start ups, ideas, visions for the future, etc, for tackling confusing every day health tasks, or complex medical problems or processes. Whether it be shopping for your groceries (with USDA based guidelines, of course... something I will never use as a low carber), applications to help patients get in touch with clinicians at the wee hours of the morning, gadgets to help quantify one's quality of sleep (something I definitely want to use) or one's vitals during exercise, or applications to help simplify the potentially embarrassing scenarios of taking a urinary or fecal incontinence history... even online gaming communities to help scientists solve the puzzles of RNA sequence folding. Medicine X showcased it all.

They also discussed various obstacles to technology advancement, such as getting governments and current clinicians on board, the issues presented by HIPAA as well as personal privacy concerns, the 'realisticness' of expectations on the patient (will many of us really want to self quantify to some of the levels seen, and how well will that go over with feelings of exhaustion, guilt, etc.), and of course... accountability. Getting patients to actually DO, and ACT upon the new information gained.

This last one is a big concern in patient advocacy, as well as in the medical industry... but it is where we can enter a sort of murky territory: how far do we help the patient, without patronizing them, or minimizing their disease? I was a bit annoyed to see that some of the innovators focused on obesity and diabetes (generalized for the audience, without explanation of types) as the example diseases for whatever initiative was presented. One of the presenters (on Day 3) went as far as calling type 2 diabetes 'the plague of humanity' (never mind that he could of stood to lose about 40-50 lbs himself, and therefore heeded his own warnings.) 

I don't want to be a real negative bitch here... but there's really nothing more dehumanizing than someone calling your illness with which you have to live day in, and day out, as the 'plague of humanity.' Whatever shall I do? Shall I wear a D scarlet letter on my sweater? Shall I hide in the closet? Shall I find ways to hide the fact that Polycystic Ovarian Syndrome keeps me very overweight, and that my weight yo-yos off and on, despite best efforts, and low carbing? I wonder... 

Among other pet peeves, one speaker simplified diabetes as something that they 'proved' could be easily prevented -- even though the patients participating in his initiative already had pre-diabetes (and most likely a 40-50% beta cell loss), completely (of course, and probably out of ignorance) ignoring the whole questions of 'delaying' versus preventing, and 'remission' versus cure. All big topics I can't being to cover here... but suffice to say that despite lifestyle choices, many still go right on to developing diabetes, so lifestyle choices really only help us REDUCE risk of any illness; they have not, in our history as people, ever inoculated ANYONE against ANY illness... and then advocates like me have a very hard time bringing peace of mind, and healing, to people who were told they were in the clear. At the end of the day, we ALL need to have a healthier lifestyle -- not just diabetics. 

But, probably the worst offender, one innovator began his speech discussing type 1 diabetes... immediately jumping into scary statistics about diabetes (which vary greatly, depending on who you ask -- and were for type 2, not type 1) and intermixing those statistics with obesity statistics (which is really not 100% correlated to diabetes, otherwise all obese people would be diabetic, and is a disease in and of itself). To top off his confusing non sequiturs, he then went on to make jokes about why people in Great Britain were so overweight, and with diabetes, "so if you've ever had a British breakfast, you'll understand," and ended his session of explaining why we need data, and more data... because we don't want to live in a world where obesity and diabetes are prevalent. Really? Honestly, it's not that disease is something to be wanted... but the  benefit of having access to data is not really summed into a war against obesity and diabetes, it is summed into patient empowerment and action toward their conditions. THAT is what he should have said. Diabetes does not define me, but it is my REALITY, and as innovators, scientists, clinicians, persons engaged with patients... you had better damn well respect my reality... for when you don't do so, that is an indignity you heap upon me. 

You had better work on
your bedside manner NOW. :) 
And the funny thing of it is that I liked their initiatives! I really did! I liked their rationales, and their analogies... their applications. I *want* to support them... but they forgot my dignity. They forgot I am more than data. I am a FACE behind the data. 

So, at the end of Day 2 of Medicine X... I found my patient voice. And I thank them for that.

I found my voice, my bearings, and my dignity... and I got up, and I spoke out. Yes, on the microphone. Yes, I brought unwanted attention on myself. But, I thought "If I say nothing, now, I don't deserve to be a blogger... I don't deserve to claim I am angry about these things... I don't deserve to be an advocate... and I didn't start my blog to play nice." My apologies to those who paid to have me there.

The last few minutes of Day 2... I ended my day, with my knees shaking, my emotions on my sleeve, my heart rate through the roof, my courage being tested, and reminding the world, with a steady voice... that I am not a fat blob, having English breakfasts, who gave herself diabetes. I AM A HUMAN, AND I HAVE DIGNITY. I am NOT the plague of humanity.

I didn't expect people to get up and clap. I didn't expect all the attention, and comments, and support I've gotten since. I only went there to learn, and listen... not to make myself "famous," somehow. (Or infamous, really...) But I just said what I had to say. I'd probably do it again, too.

Is there some diabetes that is preventable? You know... I don't think anyone FULLY knows the answer to that. BUT SO WHAT? Does it mean I no longer deserve dignity if I do get it? If I "fail" to 'prevent' it? Should I now be excommunicated from the population at large? Should I be made as an 'example' to others? Should I be spoken of as a plague? As an unwanted thing in the world? 

Well, here's Michael Graves, and Regina Holliday... 


Saturday, October 6, 2012

Our Lives, Quantified: My Adventures at Stanford Medicine X

This is the second of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Much of my first day at Stanford MedicineX left me feeling like I didn't belong there. I wasn't an innovator, or a CEO of anything (except, perhaps, CEO of my type 2 diabetes), and I wasn't quite sure what my voice was going to be at this conference. I wasn't even close friends with any of the other diabetes advocates who were attending. I felt, well, maybe I was a bit bold in having applied for this conference. But by the time our orientation dinner came around, I became a bit more confident in myself.

Carb centered food everywhere.
How apropos. 
Dinner was had at the quirky, randomly decorated Buca di Bepo restaurant (where you have to cut through the kitchen to get to the dining room), and there I found some comfort. Many health advocates of all walks of life, with all sorts of conditions, all in my same spot. Some with a few more dollars than I, some with fancy positions; some with just their blog. All just like me. People, passionately believing in raising patient awareness, having a friendly dinner and conversations of where they'd been on their various health journeys.

Things were going to be alright. I could do this, I thought. The twitter voices of the many I had met, now echoed into my reality. The voices of those surviving and thriving with breast cancer, rare diseases, heart conditions, liver transplants, rheumatoid arthritis, asthma, Crohn's disease, and of course... diabetes, among many others. Stanford's Med X was going to be patient centered, and we were going to take front row seats into a whirlwind of personal stories, and imaginative ways in which silicon valley wants to make an impact.

Day 1: The Self Tracking Symposium

"The best way to anticipate the future is to fully understand the present ...  the best way to design useful tools is to notice and respect what people are already juggling in their lives." -- Susannah Fox, Pew Internet & American Life Project, on the future of self tracking.
Pretty sure this app's not
going to help anyone, though.
I'm no stranger to self tracking. There's self tracking everywhere. Track your weight, track your heart rate during exercise, track your laps, track your steps, track your BMI, track your waist circumference, track your period, track your basal temp, track your anything, and everything. There are even many apps and things out there to help patients track these things, as well as their glucose levels, or their insulin and medication usage. MedX discussed several of those apps during various startup and innovation segments. Those can be useful, in their own level... and some will be so revolutionary, that they will no doubt, forever change the ease of use of many of our medical services, and ideally, save us a lot of money as a whole (patient, industry, nation, etc.)

But what I wasn't aware of... was that the science community was on to us. On to us patients who actually self track for something more meaningful than this. Some of us patients self track because we are our OWN science experiments... because clinicians have stopped paying attention to us, or acknowledging our conditions. Because we need meaningful ways to learn, and track patterns, and self adjust for the daily grind of managing cumbersome chronic health conditions. Because those things are never found in textbooks, and are seldom ever discussed by medical professionals. Yes, some of us self track because we want to live another day, month, year, or decade... and because we want to be heard by our medical team -- and we need a voice, and we need ammunition. We need co-operation. We need acknowledgement. Sometimes, we may even need a diagnosis.

So, meet Allan Bailey. Allan Bailey is one of the self trackers. One of us. There were other self trackers, with very impressive stories to be told... but Allan Bailey has been living with type 2 diabetes for the last 27 years (onset at age 18), so I find myself a bit biased to bring him up. Allan is one who seriously took matters into his own hands... and paid for it big time. Yes, and he paid for it to the tune of around $2K. You see, Allan got pretty tired of being given the runaround as to why his blood sugars were always so all over the place... he was told his control was 'okay' and kept being treated by conventional medical standards, but Allan was not satisfied. Allan was already living with heart complications, and four stents in one vein. So... Allan bought himself a CGMs (a continuous glucose monitoring system), to really help him learn why his blood sugars were all over the place. I'm really not sure how he managed to arm wrestle his clinician into prescribing him this device, but Allan had to pay for it out of pocket, in full. Of course, it didn't take long for him to see who the real culprits in raising his blood glucose were: breads, grains, etc. Carbs. Allan never imagined that his CGM would turn into this instantaneous feedback loop for what he ate, nor that it would turn into a behavior modification device that would lead him to euglycemia, and weight loss. Doctors never care for prescribing CGMs to persons with type 2 diabetes -- usually only to those living with type 1 diabetes, particularly because it has alarm systems to help deal with potentially dangerous low blood sugar levels, and because of how costly it is. (Nevermind that the cost of complications from uncontrolled diabetes far outweighs a $2K device, and it's supplies.) Allan now has an A1c of 5.1%, has greatly improved his health, and reduced his medications.

Now, as wonderful, encouraging, and brave as Allan's story is... it makes me angry. Very angry. Can you imagine why? Wait for it...


This, of course... is not Allan's fault in any way. Allan was a creative person, and did what he HAD to do... and is now very healthy for it. All the power to him.

My story could have well been Allan's. Except that I ate food, noted what I ate, tested every 30 minutes, spent a heck of a lot of money on test strips (even discounted ones) as well as relying on the kindness of strangers for them, and quantified this information on a spreadsheet. It didn't take long for me to bring a 10.5% A1c to 5.3%, and it has remained below 6% ever since my diagnosis. But, like Allan, I was given a big runaround for a while... When I was diagnosed, my clinician initially refused to accept I had diabetes of any kind, even though I had such a high A1c and had multiple fasting blood glucose tests well above 200 mg/dL. And when she did concede I had a problem, she merely said "I'll google the ADA website, and tell you what you need to do." HECK, I CAN DO THAT, MYSELF! Why was I wasting my precious time in her office, for that?!?

I'd love to have a CGMs, because who doesn't love to see instant graphs and things... and I am SURE that it helps a lot with compliance (and yes, it probably adds to guilt, too, when we fail.) But it's sad that persons with type 2 diabetes routinely get denied useful, powerful, quantitative technology... and this denial is not limited to the CGMs. Many patients are denied an adequate numbers of testing strips, or even a meter at all! But what good would these tools do a person with type 2 diabetes if what they are denied is the most important thing of all... KNOWLEDGE?

. . . 

At the previous dinner, when meeting several of the other "ePatients" attending Medicine X, I had a few, sort of incredulous questions as to the state of type 2 diabetes care... and the adequacy of that care, and education for the patient. What about the ADA, I was asked? Yes... what about it? In the words of Amy Tendrich, "Patient advocacy groups are not really patient advocacy groups."

I really hope that Allan's story was able to bring even a snippet of acknowledgement into our reality as persons with type 2 diabetes, the reality and importance of self tracking, and the need for patient inspired/centered care and technology. I know that I was FLOORED to see a different take on the usual 'just diet and exercise' testimony.

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