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In the KNOW … Foods.

I was asked to review a box of KNOW foods, and I did that.  Forced to try waffles and muffins?  Twist my damn arm.

Actually, I didn’t do it alone, as the review process became a neighborhood taste-testing party.  We made a chart.  It was a thing.  Check out the review over at A Sweet Life!

The One About the Stupid Pumpkins: A Photo Essay

(And if you want to make your own fabric pumpkins and then get your own tetanus shot, here’s the blog post with directions.)

Creature of Travel Habits.

In going through receipts to submit for work travel last week, I realized I had one or two for the exact same order:  iced coffee and a banana.

Maybe more than one or two.

I’m sensing a theme.

Turns out this traveler with diabetes defaults on the regular to the same snack.

Which is fine because repeat snacks have predictable effects (one super yellow banana seems to hit me as the 10 carbs, which means that it’s a unit of insulin to cover it, and the coffee doesn’t seem to require any insulin these days) and I like predictable travel snacks because my blood sugar response to the stress of airplane travel can be decidedly unpredictable so bananas are awesome and AND HEY WAIT OMG I CAN WIN A BANANA COSTUME?!!!!!

Do you find yourself eating the same sorts of things in order to attempt to predict blood sugar response?  Also, do you like dancing bananas?  I DO.

GTFO.

“Normally, I can roll with the punches. But today diabetes caused me to miss a conference call because I was sitting in a parking lot for a full hour waiting for my blood sugar to come up. Dizziness and the unwelcome low-crying jags dominated while I tried to entertain my son as he sat in the car wondering why we weren’t going anywhere and why mom kept saying, “It’s okay, it’s okay” somewhat to him but mostly to herself. Diabetes can GTFO today.”  @sixuntilme

A week or two ago, my endo suggested I move my active insulin time from 3 hours to 2 hours to help with some stubborn highs.  I forgot to implement his change for a few days, but remembered last week to update my pump.

“You might notice that you’re going low.  If that happens, change it back to 3 hours.  Just be careful,” he said.

I promised to pay close attention.  I meant to.

But the lows hit hard and fast and my brain immediately went empty.  It took me three full days of severe hypoglycemic episodes before I realized that I was low constantly.  Honestly, it was the brain fog of all those lows that kept me from changing my active insulin time back.  It wasn’t until a friend suggested I look at that number that my low-addled brain let some logic leak through; “Hey … Kerri.  Stop being low for five seconds and update that active insulin time.  Do it right now.  Or else you’ll consume your own weight in raisins and juice boxes.”

Yes, brain.  Will do, brain.

Changing that number (from 2 hours back to 3 hours, but I ultimately ended up going to 3.5 hours because the lows were persistent) helped so much, but experiencing so many back-to-back extended low blood sugars knocked me for a total loop that took several days to recover.  I’m older and more worn out than I was a few years ago (thank you, natural aging process and also hey there, new little baby person), making the hangover from hypoglycemia more pronounced these days.  So much so that I wasn’t good at processing normal thoughts, like, “Hey, when did the baby last eat?” and “Hmmm, what was I going to write in this open email draft?”

But after a solid day without a low blood sugar, my brain reclaimed “active” status.  And I’m no longer leaving post it notes stuck to the cupboard that say, “Pants:  Put some on.”  Clearly my brain is not any good without proper sugar content on board.

I have a new respect for low blood sugars and their ability to sneak up on me and tie my mental shoelaces together.

Guest Post: #Insulin4All Protest at Lilly

T1International founder Elizabeth Rowley guest posted before the #insulin4life rally in Indianapolis, and today her colleague Karyn Wofford is taking over SUM to share more about the protest itself, their goals, and how the diabetes community can continue to help.

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For nearly 18 years, I’ve had type one diabetes. I’ve been on “life support” via insulin over half of my life. I heard another person with type 1 diabetes refer to it as life support, and that really struck me. When we think of that term, we envision an ill person with breathing tubes, heart monitors and a medical team surrounding them. Diabetics truly are on life support, but it’s invisible to those around us and comes from a small glass vial or plastic pen.

When in my teens, I woke up every day and took what I saw as mere “medicine” to treat my disease. It wasn’t until I grew older and had legitimate fear of not being able to afford insulin, that I no longer thought of it as medicine. I know now it is life.

Speaking out at the #Insulin4all Demonstration

On September 9, I gathered with people with type 1 diabetes, parents, and others who had been directly impacted by diabetes to speak out in front of Eli Lilly Headquarters in Indianapolis. We spoke out against outrageous insulin prices that are likely a result of price gouging and collusion among the “big three” insulin manufacturers. Prices have been jumping in leaps and bounds over the past 20 years, and now have reached a point where patients are paying more than their mortgage to foot the monthly bill. Lives have been lost so these companies can pull in sickeningly high profits.

T1International served as the primary organizer of the event, while People of Faith for Access to Medicines (PFAM) was a huge contributor whose representatives went above and beyond to make everything happen without a hitch.

Just a few years ago, I started becoming much more vocal about having type 1 diabetes. I’d finally realized that there was so much I could do to raise awareness and educate people about the kind of diabetes I have, type one. Awareness is an invaluable tool in our fight for affordable insulin, because there is great misconception that type ones can just stop eating sugar to “treat” or “fix” our diabetes. Of course, this is untrue. No one’s body can survive without insulin, and people with type 1 diabetes cannot produce insulin, so the medicine in essential to us. Insulin = life. I was able to voice this at the demonstration, along with my personal struggles.

A Community Uniting

At the demonstration, I was moved hearing the stories of Mike Hoskins and Angela Lautner, who also have type one diabetes. Instantly, I felt a connection with them, and an overwhelming sense of community amongst all those who attended. The energy in the crowd was contagious; people who’d only met moments before were lending shoulders to cry on and unifying as a force. I think we all realized something really special had been ignited, and we are eager to keep pushing forward.

Clever chants and signs were aimed at the enormous central Eli Lilly building across the street. One protestor toted a Frederick Banting doll, while others wore shirts with phrases such as “give me insulin or give me death”. Everyone was loud, powerful and to the point, with no fuss or crazy antics. We didn’t want to cause anger, we wanted to provoke thought. A powerful message executed with passion and constructiveness was the core of the rally.

I heard many stories, like the one of a grandmother caring for her preschool-aged, type one grandson. Her life is consumed fighting for his rights and ensuring he has a future. Another mother was there with one of her three diabetic children. I struggle with the costs of only myself; I can’t imaging paying three times that amount.

The Impact

Local Indianapolis news cameras and reporters were amongst the group, and our cries to Eli Lilly were amplified. A response was released from Eli Lilly later that night:

“We are pleased that people in the diabetes community are engaged in this issue and demonstrations are one way to do so. It will take continued effort across the healthcare system to affect real change and Lilly is committed to working with others to make it happen. This topic sparks a passionate response from people who are affected and we are committed to finding solutions. Lilly has been an active participant in the insulin access dialogue for a long time, and that work will continue. In the last year, we have introduced a number of initiatives to help reduce the amount people pay at the pharmacy until broader changes occur.”

It is encouraging that we caught their attention and received a response, but people with diabetes know that current programs are only short-term fixes, or “bandaids”, as noted by an Eli Lilly Representative. On the day, we asked for three things, and we continue to ask Eli Lilly and the other insulin manufacturers to address them.

  1. Be transparent about how much it costs to make one vial of Humalog insulin
  2. Be transparent about your profits from each vial
  3. Lower the price of insulin

We are hopeful we can achieve this, especially as we ensure that the nation understands what exactly it means to have type one diabetes, or to be insulin dependent. We hope that our next stops will include New Jersey based insulin companies Novo Nordisk and Sanofi, as they are as much to blame as Eli Lilly.

A fire is burning in the hearts of those impacted by insulin prices, and with six million Americans depending on insulin to survive, this movement is anticipated to become an uprising people can longer look away from. The Eli Lilly #insulin4all demonstration has moved the online initiatives to in-person confrontation that cannot be ignored. If more and more people take a stand, we can make lower insulin prices a reality.

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Karyn Wofford is a writer, type 1 diabetic and advocate. She’s had diabetes for nearly 18 years and now serves as an advocate for T1International. Her goal is to raise awareness about her disease, while providing support for fellow people with diabetes through her writing.  

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