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Holiday Break.

Ever need a short break in order to stay in it for the long haul?

I’m doing one of those.

I’m taking off from Six Until Me until January, so I can refocus at home (see also: watch Buddy the Elf at least a dozen times) and come at 2016 with renewed drive.

In the meantime, happy holidays to you all, and I’ll see you at the turn of the new year!

Eyeball Look-and-See.

I expected the traffic.

That’s a given, driving from southern Rhode Island up to Boston.  Even in the middle of the day, there’s traffic.  Aiming to make it for a 3.30 pm eye dilation appointment at the Joslin eye clinic means leaving at 1.15 pm in order to take the insane drive into account.

But we made it on time, with a whole 15 minutes to spare.  Insurance card provided, copay paid, husband waiting patiently in the waiting room while wife goes inside to have eyeballs dilated and examined.

The eye clinic scares me.  Always has.  There’s a feeling that washes over me every time I step into the waiting room, a sort of empty feeling of being left behind.  The walls are beige and the room they sit patients in while the dilation drops do their job is awash with muted colors and videos from National Geographic that play on repeat with subtitles, even though no one is watching.  Most people are staring in increasingly strange manners at magazines, reading becoming more difficult as the drops take effect.

I looked at my phone until the words became too blurry to read.  Before tucking the phone back into my purse, I tried to check my Dexcom result, but couldn’t read the actual number.  I went by the color – gray, which means “in range,” – thinking briefly about what it would be like if the world looked like this all the time, all blurry and weird.

It was a scary thought.  Sometimes the fear of “finding out” keeps me from making appointments on time.

This particular appointment was two months late.

I thought about complications and how we don’t often talk about them, how they’re dangled in front of us like a threat, a manifestation of our (in)abilities to take care of ourselves.  “If you don’t take care of yourself,” with the sentence always ending in a severed limb or a clouded eye.  Discussing complications in this way doesn’t help me follow through on the appointments that are required to screen for different issues, or to track existing ones.  They remain a secret, a whisper, a scarlet letter, something I’m supposed to give in to instead of fight back against.  It’s easy, at times, to reschedule these appointments.

I felt ashamed.  But I expected that, too. I hold my breath sometimes when the doctor is shining that bright light into my eye, blinding me briefly in a moment of irony.

I thought about my diabetes management over the last few months, with corners cut in some places in order to make strides in others.  I hoped my eyeballs reflected my effort.  Or at least that they held steady.

I did not expect improvement.  I didn’t expect the doctor to come in with a big grin on her face after reviewing the scans of my eyes, words like “Nice job,” and “Keep doing what you’re doing,” being issued.  I didn’t expect to see the leaking reversed or the swelling down. I didn’t expect to be grinning after my appointment.

But that’s what happened.

I thought about the things that have gone terribly wrong this year, and the things I wish I could change.  The stress of moments.  The impact that stress has on my blood sugars and my overall health.  The fact that diabetes and I have spent a lot of time together over these past 29 years.  So many variables, so much time, so many opportunities for things to go south.

“See you in a few months.  Your eyes look great.”

I didn’t expect to feel that kind of relief.  I expected to be moody and sullen on the ride home.  Instead, it felt okay to smile.  And to wear sunglasses in the dark, eliciting odd looks from Longwood medical district pedestrians.

 

#Insulin4All: A Chat with Elizabeth Rowley.

Last week at the International Diabetes Federation’s World Congress in Vancouver, I had a chance to briefly reconnect with Elizabeth Rowley from T1D International.  We talked about the #Insulin4All campaign and the work she and her team are doing to help provide access to people with diabetes around the globe, and how our online community can work together to improve lives across the globe.  Today, she’s sharing some of her thoughts on how we can change the world for PWD.

Thanks for taking the time to talk today, Elizabeth!  I see that the #Insulin4All was popular on World Diabetes Day again this year.  Can you tell me more about that campaign? 

The #insulin4all campaign was started last year by a network of organisations called the Access Alliance that are passionate about access to insulin, diabetes supplies, care, and education for all people with type 1 diabetes.

World Diabetes Day (WDD) started in 1991 in order to “draw attention to issues of paramount importance to the diabetes world” and has since become a huge day in the diabetes community for raising awareness about diabetes. The Access Alliance felt that while WDD is a wonderful thing, the true spirit of the day had been somewhat lost because people around the entire globe with diabetes were often forgotten. We wanted to do something more. So many people living with type 1 diabetes struggle to survive because they cannot afford or access their life-saving insulin, blood glucose strips, or basic healthcare. Others are caught in conflict where there is little humanitarian assistance for people with diabetes.

The aim of the campaign is to unite as a diabetes and global community to show governments, companies, and individuals that we recognize the problems mentioned above. It’s important that we stand together to work towards tangible solutions. The campaign gets bigger each year around World Diabetes Day, but we want everyone to support #insulin4all every day of the year.

How can people participate?

The easiest way to support the campaign is by using the hashtag on social media and spreading the world about the issues. There is a lot of content on the Tumblr page and on the T1International website that you can share to promote and push for #insulin4all. You can also still submit an #insulin4all image on the Tumblr page. All you need to do is take a picture of yourself holding up a piece of paper with #insulin4all written on it, submit it to the campaign page, and share it widely.

How does this campaign bring the mission of insulin for all to a higher level and what is your goal?

The diabetes community is a hugely powerful force and we have seen it unite to push for change from topics such as general diabetes awareness to access to CGMs. Many people with diabetes don’t realise that millions are dying premature death because they can’t access the basics that everyone living with the condition needs to survive. We want people to know that this is happening and we want to unite to change the situation. As with any change, the first step is to understand the problems to find the best solutions. The next step is building a force of advocates to ensure that change happens. That is what this campaign has already begun doing and will continue to do until everyone can live a full life with diabetes.

What makes this campaign different from other insulin access efforts, like the 100 Campaign?

The #insulin4all campaign is somewhat unique in that last year, for example, it had participation from people in over 40 countries around the world. It is very important to share the voices of others, especially those who are facing lack of access to insulin and supplies, and we are so glad to be able to do that through this campaign.

We support the 100 Campaign and love its clear and powerful idea of 100% access to insulin by 2022. Despite the hashtag, #insulin4all’s focus is not only on insulin, but on all of the ‘pieces of the diabetes puzzle’. Even if you have insulin, for example, if you don’t have a syringe to inject it with, or a means to know your blood sugar levels, you’re still in grave danger. We feel strongly that all of these things need to be taken into account when building solutions.

Finally, while we know the #insulin4all campaign is a powerful awareness and advocacy tool, we also know that it alone will not create sustainable change. The annual campaign is part of a wider organisation and movement that is working towards that change. T1International and the other Access Alliance members are taking on a truly collective and collaborative approach because we recognize that we are stronger when we work together. The members of the alliance all work with and are part of diabetes communities around the globe which helps us ensure that we fully understand the many complex issues faced by people with diabetes. *If you want to join the Access Alliance, get in touch with elizabeth@t1international.com*

Do you think the diabetes online community has global reach and can make a truly global difference?

Part of the issue we are bringing to light is that the diabetes online community is probably not global enough. This was certainly one of the motivations we had in setting up the campaign and the Access Alliance in the first place. We have been heartened to find that, as people learn about these issues, many are shocked and stunned – and they want to do something about it. We are confident that #insulin4all will grow the number of people that know about the issues and will therefore grow our power in numbers to speak out against the injustices.

Yes, change is possible, but there are no easy answers or quick fixes when it comes to ensuring everyone around the world can obtain insulin, syringes, test trips, glucometers, and the diabetes education needed to keep them alive. That makes it even more important that we determinedly search for those answers and find appropriate solutions. It’s an ongoing process but it’s a vital one if we are to see the kind of change that is needed for our brothers and sisters with diabetes around the globe.

Is there anything else you’d like to add?

“Life with diabetes is complicated. Access to vital insulin, diabetes supplies and medical care should not be.” If you agree, support #insulin4all today or get in touch with elizabeth@t1international.com if you want to get further involved.

Looking Back: Put On Your Listening Ears.

While traveling for IDF’s World Congress this week (#wdc2015), I’m missing my little one.  Which is why I’m looking back at some posts that feature my little Bird, because she cracks me up … and also because she’s a supportive member of my diabetes team.  Today, I’m revisiting a post about a low blood sugar, the word “NO,” and a pesky little worm.

*   *   *

Our backyard is big and lovely and fenced in on all sides so that when Birdy and I are playing outside, we’re both safe from cars and giant woodland creatures (except the ones that can shimmy underneath the fence … I’m looking at you, groundhog).  I don’t keep my eyes glued to her while she plays, and we can enjoy the sunshine and the garden without feeling paranoid about passing cars, wandering off, etc.

Which is exactly what sucks about the front yard, because that’s the part of the house that the road is closest to.  So while I still need to do things in the front yard (getting the mail, tending the front garden, drawing hopscotch in the driveway), I don’t do anything of those things without having Birdzone front and center in both my mind and my actual line of sight.

Yesterday evening, Birdy and I were working in the front yard garden (I was clearing out some weeds and she was making “houses” for worms we discovered underneath a rock), when my Dexcom started wailing from my pocket.  In retrospect, I felt a little “off,” but it wasn’t until I heard the low alarm blaring from the Dexcom receiver that the symptoms kicked in fully.

“Hey, your blood sugar is whoa, Mom,” Birdy said absently, placing another worm onto a pile of dirt.

“Yeah, we need to go inside and get some snacks, okay?  It’s important,” I replied, looking at the “UNDER 65 MG/DL” warning on the Dexcom screen.

Normally, she listens.  Especially when it’s about blood sugars, because Chris and I have talked with her a few times about how listening is important, particularly when I tell her my blood sugar is low.  But she wanted to stay outside.  She liked playing with the worms.  She liked being in the dirt and gardening.  She didn’t want to have to cut playtime short because Mommy needed a few glucose tabs that she should have brought outside with her in the first place.  [Insert Mom Guilt here.]

“Nooooo waaaaaaay!!!” she said, flouncing away from me and refusing to turn around.

Under normal circumstances, I would have laughed (because “No way!” is a great response), but I was starting to feel shaky and my brain cells connections felt loose, like thoughts weren’t coupling up the right way.  We were in the front yard and I knew I needed to gain control of all potentially dangerous situations in a hurry.

“We need.  To go.  INSIDE right now.  My blood sugar is low.  This is not a joke.” I said.

“No!  I don’t waaaaaaant to!!”

My blood sugar falls fast.  It always has.  I don’t get the long, lingering slides towards hypoglycemia but instead the quick, breathless plummets.  Knowing that I was dropping and watching yet another car drive by our house meant I needed to get control fast and without issue.

Before my body completely caved to the low blood sugar, I scooped up my flailing daughter and walked into the house.  She was freaking out and still forcefully asserting her right to “NOOOO!” but I needed sugar more than I needed her to like me.  A few seconds later, we were both safely contained in the kitchen.  I had a few glucose tabs and waited for my brain to acknowledge them.  Birdy pouted in the corner, staring at her hands and still mumbling, “No way.”

A few minutes later, I felt more human.  “Birdy, I’m sorry we had to come inside.  But my blood sugar was low and it could have become an emergency.  So that’s why you needed to put your listening ears on and come inside.  I wasn’t doing it to be mean; I was doing it to be safe.  Does that make sense?”

“Yes.”

“I’m sorry we couldn’t stay outside.  But we can go back out now, okay?”

“Okay.  I’m sorry I didn’t listen.”

“It’s okay.”

She turned around and pressed her hand into mine.  Something wriggled.  She smiled.

“I brought a worm inside.”

No way.

 

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