Dinner And A Diabetes Hypothetical ~

One of my closest friends in the world and I had dinner the other night. 

We talked about all sorts of things - Our lives; the shit show that is American politics, stupid people, and the complexities of the the endocrine system — including my diabetes.

My Friend: So hypothetically speaking and in an alternative universe/perfect world, if you were to eat the exact same food, the exact same amount of food, at the same time each day and do the same activity two days in a row, and not factoring in hormones, stress, etc.,  because alternative/perfect universe, your blood sugars should be the same two days in a row… right? 

Me: Hypothetically speaking, if the queen had balls she’d be king. 

And yes, “hypotherically speaking and in an alternative universe/perfect world," if I were to eat the same food, and the exact amount of said food, at the same time of day, and did the same amount of activity two day in a row. And not factoring in hormones; stress, hydration, heat, cold, the common cold, the alignment of the planets, which way the wind is blowing, tide charts and a boatload of other variables, because alternative universe/perfect world - my blood sugars should be the same - or at least in the same ballpark as they were the day before. 

But that’s not how it works. That’s not how any of this (and by THIS, of course I mean diabetes), works. Because diabetes is never the same disease two days in a row and as we know, diabetes is a fickle bitch. 

My Friend: And because that would be too fucking easy. 

Me: EXACTLY. Also, in an alternative universe/perfect world - I would have a perfectly functioning pancreas and we wouldn't be having this conversation.

My Friend: True. But we'd still be drinking Prosecco.

Me: YOU KNOW IT. 

ALSO: Is it any wonder that we’re friends? 

Take The dQ&A Diabetes Survey - And Have Your Voice Heard

I spoke with the folks at dQ&A last week. YEP, impressed. 

######

There are things I absolutely love about the diabetes products and meds that I use daily and religiously.. and there are things that drive me absolutely bonkers about the diabetes products and meds I use daily and religiously.  

There have been times where I’ve literally said out loud: Clearly, whoever designed this (insert name of diabetes technology, accessory, med, whatever), has never worn/used/taken said diabetes technology, accessory, med, whatever!  

1. It's so incredibly frustrating. 

2. I know I’m not the only one who feels this way.

So how do we get our diabetes POV to the people who make and create? 

A good start is signing up and taking a diabetes survey from dQ&A, ( Diabetes Questions and Answers,) and participating in their patient panel.

Background

dQ&A was created in 2009, with the primary goal of making sure that companies in the diabetes arena (like Insulet, Dexcom, Medtronic, and Abbott Diabetes Care,) know what we want and need when it comes to the diabetes technology, drugs, and innovation. 

Speaking of innovation, dQ&A also works directly with new diabetes companies whose products have yet to hit the market.

Sidebar: 

They also rep our community. Last year dQ&A spoke in front of the FDA in support of the agency considering more than just A1c reduction when deciding whether to approve new diabetes drugs and devices. 

They backed up their claims by using a 3,500-person dQ&A survey to make and bring that point home.

And I'm so damn glad they did - because people with diabetes are more than our A1C, and people with diabetes already get judged more than most. 

You can sign up to take their survey HERE, (results are anonymous, personal info is never shared,) and your feedback about living with diabetes goes directly to the designers and researchers working on today’s - and tomorrow’s diabetes products. 

I’ve taken the survey, it’s easy and doesn’t take much time. 

Sign up today, take the survey - become part of their patient panel and participate in future surveys. Your voice matters - USE IT to help yourself and your community. 

dQ&A’s surveys are global and open to people in the United States, Canada, The UK and Europe.

 A fee is paid to every individual who signs up and takes a survey, in the form of a check, gift certificate, or a donation made to one of the following fab diabetes charities:

US Diabetes Charities

DOGS4Diabetics

American Diabetes Association (ADA)

Diabetic Youth Foundation

Children with Diabetes Foundation

Juvenile Diabetes Research Foundation (JDRF)

Taking Control of Your Diabetes (TCOYD)

The Faustman Lab at Massachusetts General

insulin-pumpers.org

AADE Education and Research (American Association of Diabetes Educators)

Diabetes Sisters

Diabetes Research Institute 

The dLife Foundation

The diaTribe Foundation

CarbDM

Behavioral Diabetes Institute

Beyond Type 1

Canadian Diabetes Charities 

JDRF Canada

Canadian Diabetes Association

Diabetes Hope Foundation

I Challenge Diabetes

Life For A Child (IDF Programme)

The Diabetic Children's Foundation

Charles H. Best Diabetes Centre

The diaTribe Foundation

Diabetes Quebec

McMaster Children's Hospital

Julia McFarlane Diabetes Research Centre

Connected in Motion

Diabetes Advocacy 

UK Diabetes Charities

JDRF (Juvenile Diabetes Research Foundation) UK

Diabetes UK

South Asian Health Foundation  

When Diabetes Burnout Enters My World

I originally wrote this post for findapsychologist.org back in 2014 and it's one of my favorites. Diabetes Burnout happens to the best of us because we live with it 365, 24X7 and it's hard offing work.

I haven’t had a day off from type 1 diabetes in over 14,000 days. Not once in all that time have I received time off from diabetes for good behavior, vacations, family weddings, funerals, etc.  

I’ve accepted that I will never have a day off from my diabetes unless they find a cure, and I do my best to live a great life – and have a great life with diabetes.

But like every single person living with diabetes and regardless of the type, there are moments (sometimes extending into weeks,) where I deal with Diabetes Burnout.

Living with diabetes itself is a never-ending full time job:

The continual blood sugar testing, battling insurance companies to cover the insulin that you require to live. Counting of carbs of absolutely everything you put in your mouth and the anxiety of doctors’ appointments & the lab results that accompany them. Insulin pump tubing getting tangled in doorknobs and ripping out my infusion site, just when I’m ready to go out the door.

The diabetes guilt that creeps up and then into my heart, just when I think I’m passed it. There’s the worry that’s always in the back of my head, and every PWD (person with diabetes,) head regarding both the present and the future.

My diabetes burnout comes in waves and not always necessarily when you’d expect. Sometimes it strikes when I’m packing for a trip and my diabetes supplies take up more room then I think it has a right to. And in those moments I wish I could chuck my Diabetes and my diabetes supplies out the window - BUT I CAN'T. So I acknowledge the frustration and forge ahead with a vengeance.

Other times my diabetes burnout appears right on queue and has lingering effects. Like when it’s 2 a.m. and I have to be up in four hours and & my blood sugar refuses to go down, even after 4 correction boluses and 2 site changes.

The same can absolutely be said about my blood sugar refusing to stay up – even after lowering the temporary basal rate on my insulin pump twice and downing 4 juice boxes in three hours and a fist full of glucose tabs.

In those moments of diabetes exhaustion, anger and fear, tears sting my eyes and I physically and mentally feel like Atlas – And it’s hard to shake off the diabetes muck of it all.

And there are days when I cry for those I’ve loved and lost to diabetes. People like my sister, my father, my two aunts, one of my best friends from Diabetes camp who passed away last year, and DOC family members who lost their battle with D. I think about them every day – And most times the memory of them makes me smile and gives me strength. And there are days when I cry for them and feel their loss so very profoundly.

Sometimes diabetes burnout occurs just because it can. On those days, I do what I have to when it comes to living with my diabetes, but I take extra care not to define myself by the number that flashes on my meter, and use it as my Diabetes GPS system - telling me where my body is and what direction it needs to go . 

And I’m incredibly lucky that I have an amazing diabetes support system when it comes to dealing with diabetes burnout.

I have my Diabetes Pit Crew. 

My amazing Endocrinologist and Certified Diabetes Educator who understand diabetes burnout and who treat it as a very real symptom of diabetes. 

A counselor who I can reach out and schedule some one-on-one time with, when I find that diabetes burnout is creeping into the picture of my life. I have family members and friends who are there for me whenever I need them.

And I have a strong and supportive community of people living with diabetes.

The Diabetes Online Community lifts me up during bouts of diabetes burnout because they not only understand diabetes burnout; they’ve experienced it, they "get it."  The DOC show's me that I am not alone in my life with diabetes and are always there for me when I feel as if I am. And thanks to my multi-faceted/tiered support system, I get glad again - and I am a lucky duck, indeed.

#IwishPeopleKnewThatDiabetes (dot) Org Is Up & Running!

"You have to lift your head out of the mud and just do it." Terri Garr~

"Friendship is born at the moment when one person says to the other: What! You too? 
I thought I was the only one." C.S. Lewis~
########

For those of you who have been asking me and waiting , the  #IwishPeopleKnewThatDiabetes website is now up and running!

And with your help, the site can continually grow into a mixed media gallery/teaching tool, and be a place where people living with diabetes can share their thoughts and feelings through mixed media formats that will inspire and educate others in the process.

And a place where people sans diabetes can come away with a better understanding of what it’s like to live with diabetes and become both educated and inspired in the process. 

The past few months I’ve reached out to a few Diabetes Online Community friends to submit blog posts, artwork, and videos and what they've submitted is pretty damn special. 

Please click on the link below and and give a look.

http://iwishpeopleknewthatdiabetes.org

The site is still a work in progress re: the layout and video plugins - but it's up and running and  your submissions, thoughts, and comments are needed to make it complete! 

Check it out and thanks in advance! 

In Need Of Lemons And A Much Needed Walk~

Some days are hard for reasons that have nothing to do with diabetes. 
###
I looked at the clock - it was 6:30 pm and I needed lemons because I’d been craving a tomato salad with olive and lemon dressing all day.  I was also in need of a walk because my head was about to explode. 

It was one of those days where every conceivable thing that could go wrong, did. 
Frustrations greeted me from every corner and location  - including my inbox. 
On top of it, I was sad because I'd been thinking and missing some people in my life that were no longer here - and I felt alone. 
I put on my asics nimbus gels; checked my blood sugar (it was 182,) dialed back my insulin pump to a temporary basal rate of 60%, grabbed a small recycled shopping bag that converted into a backpack and tossed some money and a kind bar in there. 
Then I clipped my iPhone to my left hip, and with my insulin pump clipped to my right hip, I put on my headphones and I walked.... and I walked. 
I walked towards the setting sun and away from the days problems and fears. 
I listened to music - an eclectic mix of upbeat songs - until Patty Griffin’s “Making Pies,” came into the rotation. I skipped that beautiful song entirely, because even though I love Patty Griffin & the song - it’s incredibly sad and I didn't want to hear it. 
I kept walking and a 1.5 miles later I started to feel better. 
And I kept walking.  
Finally, I made my way to the grocery store, bought my lemons, threw them in my bag, walked out of the store and you guessed it, I kept walking. 
At 8pm, I walked to and in my front door - and I felt like a different person.
My blood sugar was holding study at 122. 

But the walk wasn’t about getting a lower blood sugar, it was about walking to clear my head and to feel better - the 122  blood sugar was an added plus that made me smile ~

Bedtime High Blood Sugars & Finding Comfort & Support Via The DOC ~

I had a late dinner last night -it was a dinner I eat at least once a week - and usually everything is cool. USUALLY.
######
It started out to be a good night, it really did. I was feeling all sorts of peppy and my blood sugar was 125 before dinner - YAY ME. 
Speaking of dinner, it was one of my favorites - a homemade Greek yogurt, cilantro, garlic, jalapeño, spicy dip that yours truly made from scratch, accompanied fresh famers market veggies and Food Should Taste Good, Multigrain Gluten Free Chips. 

I have this very same meal at least week during the summer, sometimes twice a week  - except sometimes the dip is made with huge handfuls of fresh basil or dill instead of cilantro and Cayenne pepper instead of jalapeño. But..., I digress. 
It’s a simple meal that makes me feel like I’m indulging because of exceptional the crunch factor, except I’m not indulging.
 The FSTG chips are easy for me to bolus for - 18 grams of carbs - for 10 chips, times 2 = 36 grams of carbs for the chips. The veggies (sweet peppers, celery and organic carrots,) added extra crunch and yumminess to the mix and very little carbs - not to mention the whole, “being healthy,” thing. 
The Greek yogurt was 7 grams of carbs for 5.3 ounces, which in this case was half the dip.
Normally I bolus between 45 and 50 grams and I’m usually right on target for the rest of the night. 

Except... last night I wasn’t. 

I bolused for/prepped my meal, brought it in front of the TV to eat and yes, I know, I shouldn’t eat in front of the TV, but I wanted to watch episode 5 of the PBS, Masterpiece Theater’s much acclaimed and totally awesome series, Poldark  via the on-demand.
Sidebar: Don’t even get me started on Poldark - I’M OBSESSED. 
A couple hours later I checked my blood sugar and was 220 - not terrible. Not great, but not terrible. 
I gave myself a correction bolus and went about my business. 
An hour later I was ready for bed - I could barely keep my eyes open and I was thirsty. 
Not a great sign in Kelly’s Big Book of D -and probably not your Big Book of D, either. 
So I checked again and my blood sugar was 359.
Then I tested again and it was 361 - And Kelly was not happy. 
In fact I uttered a string of four letter words that would make sailor blush and gave myself a 5.4 unit correction bolus - and of course, as soon as the last unit cleared my insulin pump’s screen, I immediately thought that I should have changed my infusion site BEFORE I gave the correction bolus - even thought the site was less then three days old.
20 some minutes later I tested again and it was 418 - not what I wanted to see. 
I switched out my 2 day old infusion site and gave myself another correction bolus of 2.5 units, tested for ketones (I had a “small,” amount,) drank a huge glass of water and I waited I also peed because high blood sugars and water not only = ketones, they also = peeing like a race horse. But you already know that. 
I was so flipping tired and  I just wanted to go to bed. Actually, I was already in bed and had my meter and test strips next me, the bedroom-lights out, the hallway light on and my iPhone in hand. 
 It was almost midnight and I was afraid of falling asleep before I knew that it was OK to actually sleep. So I logged onto Facebook and posted the following status: 

And as long as I’m being honest, it was great to talk with people who ‘got it” while I waited for my blood sugar to start going down. 

Talking and connecting with others kept me calm, because sometimes - at least in my case, being upset about a high blood sugar can keep that bg elevated. 
Talking with some DOC pals was not only great medicine, it was incredibly comforting. 
Some of the folks in the FB thread were dealing with the same thing, others were dealing with low blood sugars, and some were dealing with normal blood sugars, but knew what I was feeling and offered their comfort because they knew I needed it. 
Some were type 3s and didn’t have diabetes at all, but offered their support just the same. How beautiful is that!
And I appreciated the comfort and the conversation so much. 
Sidebar & FTR: I would have post the others Facebook comments, but I haven’t asked them yet - I don't like to post other peoples thoughts without asking. 

30 minutes later my blood sugar was 369 and things were returning to normal. 
I feel asleep as soon as my head hit the pillow and I woke up with a blood sugar of 101 and feeling like I’d been hit by a truck. 
I also felt damn thankful for the Diabetes Online Community for not only “getting it,” but for being there for and with me when I was feeling alone and at my most vulnerable. 
THANKS GUYS.

Xoxoxo