Thursday, July 31, 2014

Second Screen, Second Sight

My husband and I are among a growing number of users implementing grassroots remote/second screen monitoring of blood sugar values, trends, and patterns. It's called CGM in the Cloud.

I have a lot to share about this concept in the coming months. Expect to see an interview with Hubster about the changes he's made to the existing framework that will allow for future wearable tech, our favorite blood sugar pattern management apps, and even future CGM technology that's coming down the pike to provide us our data in different formats.

It's my data. If I can see it in a format I can understand and I can make inferences from it, I can manage my numbers better.

Case in point.

I've been seeing higher numbers creep up on me first thing in the morning. My fasting blood sugar has been "floating the rumble line" as I call it and twirling itself around my upper threshold. If I forget to bolus insulin for my morning coffee, I'm riding much higher by breakfast. Many mornings, if I look back, I might notice that my numbers stayed steady in a safe-for-sleeping range followed by a gradual bump midway through the night. That bump is a bit murky for me sometimes. Hard to see the time, the values, the minutiae.


I'm supposed to be able to dive into that data and evaluate what could be changed. Otherwise I wait three months of seeing this over and over again before discussing it with my diabetes educator or my endocrinologist. One of them will lean toward the screen and stare at a tangled mess of lines and determine the same thing I should be able to determine myself...if I examine the data in a way that makes sense to my brain.

Do you know what makes sense to my brain? Numbers.

Using Nightscout, I can scroll through my night and pinpoint exactly when I had my first out-of-sync data point because I can see the numeric values and they are timestamped. At 2:40am, the first reading that wasn't between 129 and 132 popped up: 134. Not concerning in and of itself. 25min later at 3:05am, it was 139. Again, not worth a great deal of worry. Except at 3:14am, 144. 3:27am, 152. 20min later 174. By 4am, 176. This is how a blood sugar creeps.

What is important to understand is not that any one method of reading this data is better than another, but that this particular method is a platform for delivering that data to me in a way that makes sense to how I personally process the data. Dr. Ponder, whom I admire and support, can read his graph lines with a kind of precision that I cannot. But I can understand when I see a 130 creep to a 176 from 3am-4am. And I can make an adjustment by shifting that pre-dawn basal rate back an hour. Now this is what I see when I look at my Dexcom screen:


This is taking SMBG (self-monitoring of blood glucose) to an empowering point. I am not manipulating my data. I'm understanding the language of my data.

And that's why I need you to take less time than it took to read my silly blog post and tell FDA that it's a great idea to fasttrack the regulatory process as they are proposing in the draft guidance for MDDS - or Mobile Device Data Systems - second screens like Nightscout and mobile apps that facilitate “the electronic transfer or exchange of medical device data from a medical device without altering the function or parameters of any connected devices.”

You have a story. You have a voice. Both are unique and powerful. FDA wants to hear our stories.

Saturday, June 21, 2014

The R Word

Dr. Eyes was almost done with my annual exam and had pronounced my right eye clear. She was almost done with my left when she saw them. More dots. More MAs (micro aneurysms) creeping toward the center of my macula.

She leaned to her assistant and rattled off a few acronyms and shorthand ophthalmology phrases. NPDR, I heard her say.

"NPDR?" I interrupted. "R? So this is R? This is what retinopathy is?"

"It's been retinopathy for the last year and a half. I called it trace before. Now I'm calling it mild. There is also moderate and severe. This is mild," she explained.

Wow. The last year and a half? And I didn't even realize that's what I was up against. Retroactive retinopathy. Heh. I didn't know that's what this has been. It was just pinholes to me. Cobwebs, we'd called them the first time. It seemed so manageable, so non-aggressive, just a facet of having had diabetes for over two decades. She had explained precisely what we were dealing with and I felt I had known where we stood.

The R word changes everything...if I let it.

It would be easy to be frustrated with her decision not to describe it to me as such, but instead I'm fascinated. It is completely true that the problem seemed manageable to me before it had a giant and scary COMPLICATION word stamped across it. As soon as the R word wedged itself in my head, so too did words like failure and futility and massive and scary and blindness.

Then I realized that nothing had changed from a few moments before. Nothing had changed from the year before when Dr. Ben had held my hand and said "This is nothing you did. This is diabetes." Nothing had changed from the first time Dr. Eyes pointed up into the far corner of the dilation room and said "cobwebs." I was fine then. I'm fine now. And I'll be fine. Right?

"It's time to hand you off to a retinal specialist," she said. "I will still see you for vision checks and annuals, but I want to hand you off to someone who has the tools to follow this. Let's see. Where are you living now? Okay, I want someone that is in the Plano office then. Dr. Retinas is really smart. And he's young, too. He can be with you for the long haul."

The long haul.

90% of people who've had this disease as long as I have experience some degree of retinopathy, of macular edema, of either NPDR or it's vicious big sister PDR.

It's nothing I did. Or didn't do.

Jesus, how hard it is to believe that. I can say it, I can type it, I can fucking PREACH it to others, but in a disease where you expend every last ounce of energy trying to control wiggling little variables and outcomes from one hour to the next, it's hard to accept that there may be rounds that you will lose no matter what you do. Futility.

My visit to Dr. Retinas the next week was a tough one on several counts.

I had a very negative, painful reaction to the first attempt to inject dye into my delicate little veins for the fluorescein angiogram. The vein in my arm refused to accept the dye, began to bulge, and spilled the dye into the surrounding tissues. What is usually a slight stinging with mild nausea for patients during this procedure was me crumpled in the floor crying, needing to vomit, an oscillating fan positioned toward my face, an ice pack on my swollen arm.

Honestly? It was fucking terrifying.

And then we had to try again.

The second time we went in through my hand and it took. I fought back nausea and tears with the needle in my hand as I pinned my teary eyes open, staring forward into the bright lights thinking, "So this is my future. This is what eye appointments will be now. This is what a complication feels like. It feels like pain and loneliness and too many questions and nausea." Oh, the nausea. I was sick for over an hour.

By the time I got back to Dr. Retinas to review the photos, I didn't even care anymore. Seriously. I just kind of blinked silently, trying to ask questions that mostly consisted of "Do we ever have to do that angiogram again?"

"No," he lied.

He showed me that both eyes have MAs on the macula. Pinholes, perhaps, but not cobwebs anymore. These itsy bitsy spiders were crawling all over my maculas, taking up residence center stage. And he showed me where the left one was bleeding out. You could see the little fluorescent spillage on the black and white photo.

Since I don't have any swelling (edema) or vision loss, no fluid on my optic nerve, etc, all we do is watch. Wait. Come back in 6 months. Watch and wait. Watch and wait.

We're in this for the long haul.

I won't be beaten by a word.

"The precision of naming takes away from the uniqueness of seeing."
---Pierre Bonnard, French painter (1867-1947)

Sunday, June 8, 2014

Turning and Turning

It's been a busy couple of months in my home. We just moved houses two weeks ago. It's conference season, vacation season. We have so many things to do and so many places to be. And in the back of my mind and whenever I've glanced at the calendar on my kitchen wall, tomorrow's appointment has been creeping closer.

The Ophthalmologist.

I had planned to blog about it after the appointment...as I did after I saw Dr. Eyes last year...and as I did after my retinal screening with Dr. Ben last summer.

But instead I'd like to tell you what I feel before I go. Because there is no way to prepare. And because you may feel this way, too.

I'm typing this post with a blood sugar of 393. No, nothing's wrong with my diabetes management (she explains to her nonD-audience). Just a typical day. I know why my blood sugar is high today. I know that it's "my fault" because I ate a snack and forgot to bolus insulin for it because I'm still unpacking boxes and chasing my tiny minions around. My continuous monitoring sensor was weeks old, so I trashed it this morning after my shower and also forgot to apply a new one. My pre-lunch blood sugar was normal. Etc. Etc. D-bullshit and such. Just explaining that life is full of pre-occupations right now. This is not the most interesting paragraph of my life.

But it makes me think about how, even if I never slipped up, even if I never got it "wrong," I'd still have no idea whether or not eye complications were here or not. They're not visible to the person experiencing them and they happen to people with diabetes without discrimination. I'm not having any floaters, blurs, headaches, etc. No reason to be concerned except for the reality of almost 24 years with this disease.

My history with eye concerns is complicated. First, it looked like I had serious problems (with no symptoms) as a college kid, then my eyes looked perfect as a young adult, and then, in 2013, I saw the very first little needling of problems - pinhole sized hemorrhages in my retinas. And by saw, I mean that someone showed me. Because I see just fine.

Every six months, the old pinholes have reabsorbed, but new ones are nearby. The exam photos never look the same. Like a kaleidoscope slowly turning, each field slightly different from the last time you looked through it.

I have - quite literally - no idea what Dr. Eyes will see tomorrow when she stares into that scope. And that's the terrifying thing about going to the eye doctor as a person with diabetes.

We sit down at that roulette table, lean toward the equipment, and call our bets. Wait for the spinning, spinning to stop. Hear the call. Deal with the aftermath.

I've seen too many friends dealt such painful, painful losses at that table. I've read an equal number of jubilant status updates and tweets where they walked away with full pockets.

I will never forget the day I sat in my car outside an ophthalmologist's office 16 years ago and cried my eyes out, alone in my car. Never more alone. Or the dances I've done walking out with the words "no diabetes in your eyes" still ringing in my ears.

Tomorrow, I hope to bet against the House. And I hope the ball stops gently...wherever it happens to stop.

"Turning and turning in the widening gyre
The falcon cannot hear the falconer;
Things fall apart; the centre cannot hold"
---The Second Coming, William Butler Yeats

Wednesday, May 14, 2014

Let it Go


Click for the What Brings Me Down - Wednesday 5/14 Link List.

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

---

There was a time, in days of yore, when we wrote on paper.

I was college-aged and I remember that I was sitting in a Wendy's. I couldn't tell you what state or city or who I might have eaten with, but I remember that I was at a Wendy's. And I was feeling exceptionally beaten about my health.

I remember pulling out a scrap of notebook paper and just starting to list every concern I had about my body. Every ailment I thought I might have. Everything that scared me. Didn't make sense.

I took an inventory from head to toe, the way you might melt into meditation, one layer at a time. My head - that when I was 18, experienced such sharp pains when I would move my neck suddenly that I would feel like an ice pick had pierced my brain and I'd black out. My vision. Retinopathy. My messed up jaw. The way my cheeks would flush for no reason and also when my blood sugar was high...

I went down my body, cursing each mother-f-ing part that didn't work, noting that every system I could think of from musculo-skeletal to reproductive seemed busted.

I felt busted.

But the words looked so small on paper. It was just a little list. A little list of words and phrases.

I walked over to the trash can and ripped the list to shreds. And I let it go. Every enemy I was cursed to share this body with was at the bottom of a can behind a little swingy door that said THANKS.

In cleaning out some old papers last week in preparation for our upcoming move, I ran across another copy of that list. This one had to be from when I was about 21 because I still thought I might have endometriosis (turns out it's just particularly painful ovulation that doesn't plague me as much anymore). It was before I dealt with kidney stones at age 24. With car wreck-induced soft tissue damage in my neck.


I'm sure that I intended to rip this one to shreds, too, but it gives me a glimpse of where I was in my headspace. My college years were challenging with diabetes. Not because I was rebellious or away from my parents. That was actually all fine.

It was because of a crappy endocrinologist who labeled me as "non-compliant" and seemed annoyed with my presence. It was because of a treasured and respected professor who approached me as though I were fragile and told my peers that my bones were brittle. It was because I was entering adulthood with a bunch of other promising young people who didn't have this burden of type 1 diabetes. It was because I believed without question that I was the only person struggling at diabetes management.

The worst day I remember with diabetes is the day my particularly callous ophthalmologist told me - a 19 year old girl, to all appearances responsible and composed - that it was only a short matter of time before retinopathy and glaucoma took my eyesight. I had responded with a half-laugh and "surely, I'm not that far gone." He sighed and said something fairly dismissive and told me that my retinal capillaries had burst and my larger blood vessels were next and that it was a mark of how I wasn't watching my blood sugars. I sat in my car and cried a long time before driving back to the dorms. I didn't feel like being alone, but I didn't have anyone I could really discuss these fears with who would get it. I walked to the room down the hall and found my friends playing darts.

I started throwing darts in the general direction of the dartboard. I hurled darts as hard as I could throw with my weak wimpy arms and I screamed, I cried out, tears rolling down my face. I just let it all out.

It's not fair. I didn't ask for this. I don't want to go blind. What more do they want from me?

Dave and Jay, I'm sorry for all the holes I left in your dorm wall. Thank you for being there for me that day. And Karen, too. In nearly 24 years of this disease, that was the one day I have screamed.

But not the only day I've probably needed to.

Diabetes doesn't care if you're wealthy or poor, hearty or frail, organized or frazzled. It doesn't give a shit whether or not you would be good at this.

It's relentless, unforgiving, hostile. It is never not on my mind. It's an enemy within and I can't retaliate except to try to live well to spite it.

How do I cope? Rip that fucker up.


Tuesday, May 13, 2014

Shipwrecked


Click for the Poetry Tuesday - Tuesday 5/13 Link List.

This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

---

Shipwrecked

Treading water, pumping
my arms and legs,
barely keeping afloat,
for years.
The waves of my life cresting,
cascading.

I could handle it.
Or at least...
I didn’t want you to have to.
I found my footing, now and then.

When there was only
one set of footprints in the sand,
they were mine,
and they slogged forward
against a relentless undertow.

Diabetes was my burden to bear,
not yours, dear reader.

Like the wild-eyed ruler of an unmarked coastline,
I talked to myself and no one,
if I talked of it at all.

But the day that
those million bottles
with stories like mine
floated within my reach,
I realized I didn't have to chart my course alone.

Like a recovered castaway,
I could tell you now of number-filled unnumbered days,
etching tick marks onto logbook walls.
I could tell you still of darker fears
that prick my days
and lance my dreams.

An advocate is poised
to recount both the despair
- and the hope -
of the human condition.
Sometimes it comes from sun-blanched lips
whipped hard by salty air,
soul of scar tissue, leathered, bloodied.
Sometimes it’s said from the easy chair of privilege
with modern comforts
that seem bionic and apart.

That empty stretch of sand
will always be my beach, my exile, my home.
We find our way
back to this scene.
The concrete is not my truth.

But if you read this message,
That means we're neither of us alone.