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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.  

Guest Post: Mindy Bartleson on Chronic Illness, Mental Heath, and Removing the Rose Colored Glasses

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much.  Today, she’s sharing the why behind her efforts on SixUntilMe.

And if you’d like to help this book get published, you can visit the crowdfunding page to learn more, back her project, and help spread the word.  The Kickstarter ends a week from tomorrow.

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Usually, there are multiple things going on. It might be visible. It may be shared. It could be a secret- only shared with your inner circle. Even without a mental health diagnosis, mental health is an important thing to keep in mind with chronic illness, like diabetes. Hell- even without a chronic illness- mental health is important. Sadly though, it’s something that isn’t often talked about or taken seriously. It’s taboo. It’s not important. It’s hard to understand. You name it- we’ve heard it. Social norms also play a role. We’re supposed to be productive members of society and not acknowledge anything negative.

Over the years, I’ve adjusted my blog.. I wanted to talk about it all together- the type 1 diabetes, PCOS, endometriosis, anxiety, OCD, ADHD, (other diagnoses), loss, and more- because like the title of my blog says- “There’s More to the Story”. I wanted to talk about it honestly- the good and the bad. I didn’t used to do this. It wasn’t until diabetes burnout hit me with full force when I was in college. That’s when I realized something. Up until that point I wouldn’t acknowledge the negative parts of diabetes- of chronic illness. I thought I had to pick a viewpoint and couldn’t move. I had to either be positive or negative so I found myself not only lying to the world around me, but also to myself. That’s when I switched how I approached my blog and life.

About two years ago, I realized that I was applying rose-colored glasses to a lot of things in my life already at the age of 22. I was starting to say that all the bad things were worth it or completely ignoring them. I firmly believe that yes I can do it. That I (and others) can get through things. But I want to acknowledge that it can suck. That it’s hard. That maybe there are systematic things that play a part too. That I should still check my privilege. That’s what life is. It’s what I needed to do.

We need to talk about and share those moments- not just for ourselves but for other people who need that honesty to know that they are not alone. We need to share the moments where we sit crying on the bathroom floor because diabetes wouldn’t cooperate all day and someone made a hurtful comment. Then we can share how we got back up to change that pumpsite and maybe to tell that person who made the hurtful comment how we feel. The how is so important. The fact that we get back up is so important. But- maybe someone needs to hear how we felt when the tears hit – how we felt when you just had enough – how it felt to let it out. We need to do that.

About two years ago, I made the decision to start a project. I decided to write a book about chronic illness and mental health. Everything I’ve talked about so far is what I applied to writing this book.

I’m aiming to balance the positive and the negative together on growing up in general but also with chronic illness and mental health along for the ride. I talk about moments of why I sat on the bathroom floor crying and how I got up. Of course I talk about more- and it wasn’t always a bathroom floor.

Over the past two years, writing this book has pushed me to process a lot of my past. All of it. I’ve seen how far I’ve come and realized the importance of so many situations.

I’m pursuing self-publishing. Because I recently graduated college (and put myself through it so I have loans) and have a social work degree, I’m utilizing crowdfunding to make this happen.

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I’ve put my money where my blog post mouth is and backed Mindy’s campaign, as I think this resource would be a powerful one for our community as a whole.  Mental health is health and I agree it needs to be talked about, shared, and cared for as openly as diabetes.  

For more from Mindy, you can follow her on Instagram, Twitter, Facebook, and her blog “There’s More to the Story.”  

 

A Sobering Experience

“Do you mind ringing out this orange juice first?”  I asked the lady who was working the cash register.

“No problem,” and she went bip with the scanner against the bottle’s bar code while my Dexcom screamed BEEP BEEP BEEP! from my phone.

I opened the bottle and downed the majority of it in one, open-throated gulp.  My son, strapped into the front of the shopping cart, reached over to the conveyor belt as the groceries were unloaded, one by one, by his mother with the bird hands.

“Hang on, little guy.  Here, play with this,” I said, handing him a crinkly toy elephant that was peeking out of my purse.  I ran my sleeve against my forehead to catch the beads of sweat that threatened to run down my face.  My ankles felt weak and I know I stumbled a little when I went to unload the contents of my carriage onto the conveyor belt.

“Miss, do you have a Stop & Shop card?” the cashier asked, sizing me up.  She was my mother’s age.  She watched me fumble with my wallet in search of the card, and I dropped it instead of landing it into her hand.

“Hang on a second,” I said, carefully bending over and plucking the card from the floor.   My son yelled, “YEAH!!!” and then “HEY!” from the carriage.  My blood sugar was still dropping and the Dexcom kept hollering.  Clumsy hands and the fog of hypoglycemia made my every movement look ridiculously awkward.

And I knew, knew, knew that the cashier thought I was drunk.

I read Riva’s article about hypoglycemic episodes looking like drunk moments and shook my head in recognition of the concept, but honestly hadn’t ever been mistaken as drunk when low before.  In college, I had this credit-card sized placard in my wallet that said something like, “I have type 1 diabetes.  If I seem drunk, please allow me to check my blood sugar to make sure I am not experiencing low blood sugar.”  I never had to use it, and my college roommates and I giggled at it once in a while, probably because we were actually drunk.

But yesterday at the grocery store, I wished that card had been in my wallet.  I would have handed it to the cashier and pointed sheepishly at the orange juice.

Instead, in the fog of my low, I gracelessly unloaded and paid for my groceries while wrangling my one year old.  Running my debit card for the purchase, I said to the cashier, “I have diabetes.  My blood sugar is low,” but I’m not sure she believed me.  My brain wasn’t sweetened enough to really care.  I was more concerned with pushing through to the other side of this low.

After we paid, I moved the carriage over to a row of benches just inside the main door of the grocery store and we sat there.  I finished my orange juice.  A few minutes later, the arrow on my CGM graph started pointing in a more respectable direction.  I almost went back to the cashier to explain myself more lucidly but decided against it.  Maybe next time I see her, I’ll explain.  For now, it was time to go home.

“Mama?  Mamamamamamamama …” rambled my little man.

“Okay, sweet boy.  We’re good to go.  Let’s go.”

Thirty One Years with Diabetes.

When my diabetes marked it’s 25th birthday, I wrote a bulleted of stuff I’ve learned since diagnosis.  Another handful of years later, most of that list still holds up, with a few tweaks:

Sometimes I can’t believe this is still A Thing.  That diabetes is still a thing that requires attention, work, and patience.  I used to believe in the “five more years until a cure” thing, but that promise has been folded and refolded six times over by now.  I believe that the research maybe prevent diabetes in my children, but I’m not sure it will cure it for me.  And that weirds me out.  “Forever” was always tempered by that, “Yeah, but five more years …”

And there’s a strange sense of acceptance that’s come in the last seven years, accepting that diabetes might not really be cured for me.  I find myself looking at research and technology that’s rocketing towards alleviating the burden of diabetes on people living with it and feeling awesome about that progress.  And it’s not just the Big Companies who are making a difference.  It’s the renegade ones.  And the community groups.  And the PWD empowered and inspired to make a difference.

I’m regularly impressed by families who live with diabetes.  They know how to take These Things seriously without taking those Things too seriously.  They speak in a special language of numbers and ratios and tubing lengths and labwork percentages.  They are tireless, even when they’re tired.

They inspire the absolute hell out of me.

Life is still filled with a whole bunch of colors and I’m not done coloring yet … even if it’s occasionally outside the lines.  Despite diabetes.  And because of diabetes.

But duuuuuuude, I still pretty much despise this disease.  Yep.  I can’t pretend to be above that, to have embraced it and found happiness in it.  Nope.  I do not like diabetes.  Any grace that’s borne of it doesn’t change the chokehold it’s had on my life at times.  I wish that wasn’t true, but it is true.

However.  I have gained so much from this disease.

Not just perspective, although that’s a powerful grab.  Troubles whittle themselves down a little bit when put through the mental diabetes woodchipper.  That perspective has been to my benefit as I went through my teen years (other girls were angry and upset that their jeans were a size 8 instead of a size 2 –  I was fine with a size 8 so long as my morning BG was between 80 – 140 mg/dL) and also as I managed pregnancies (stretch marks?  morning sickness?  yeah, but that healthy baby, though).

I’ve also made friendships – ones as chronic and lifelong as diabetes – where these like-pancreased connections are part of my inner circle for life.  FOR LIFE.  This connection was forged through similar circumstances but will remain intact despite distance, time, and even a cure.

But the reality of diabetes sets in more and more, especially as the same realities of Regular Life hit their stride.  I can’t pretend that it’s all easy and effortless.  This shit might look easy, but some days it’s hard.

Diabetes scares me more now that I’m older.  I read about heart attacks and other crisis events and used to think, “Damn.  They were so young.”  And now I read, thinking, “Damn.  I’m in that age range where I’m old enough for it to happen and young enough for people to think, ‘Damn, they were so young.'”

This freaks me out.  I worry about the Big Things more these days than I did before.  I try not to, but I still do.  Sometimes bedtime is when my brain hits the spin cycle and I have trouble falling asleep, picturing What Ifs and Oh Shits.

Aging and diabetes is now a thing.  Are my knees making that weird cricking sound when I run up the stairs because I’m older?  Or because of diabetes?  Or is it a combo deal?  And when you answer, can you speak up because I’m seriously having trouble hearing you.

Even after 31 years, diabetes still has days where it behaves.  And days when it doesn’t.

I can say exactly the same for myself.

Since I wrote my list at 25 years of diabetes, I’ve had another little baby bird and my life now is tied to two young people, not just one.  I have two babies to stay healthy for, two babies to annoy well into their old age.  The motivating force towards good health that my children provide cannot be properly appreciated.  They are my little world.

My hope lives in a different house now.  As I mentioned, I’m not expecting diabetes to be cured, but I’m anticipating that I may be able to ignore it altogether in the future; that data and technology will come together in a way that doesn’t make me produce insulin but also doesn’t produce worry and anxiety in the same way.  Stick on the device and it will diabetes for you.  Yes, please.  Hurry, please.

Instead, I hope for my kids.  I hope for their kids.  I hope that my mom will know with certainty that diabetes will never make my life less mine.  I hope that my husband knows I’ll be around to drive him bananas for decades to come.  I hope the community rallies and sticks together with one another, rising up against our common enemy while educating, supporting, and loving one another.  Enormous thanks to all of you for being part of a network of hearts and hopes that make this walk with diabetes easier, and less lonely.

After 31 years, I look at this body, all riddled with shouldn’ts and can’ts, and see that it should, and it can.

And it will.

 

Building a Healthcare Team

Since deciding that our family of four was the maximum number of people to be in our family (read: no more babies), I’ve been working to transition as much of my healthcare team from Boston to Rhode Island.  After almost 30 years at the Joslin Clinic, this has been a tough transition, because I’m so used to their style and routine.

As in, of course you sit in traffic for two hours before the appointment.  Of course the endocrinologist is forced to schedule three patients, all for 1 pm appointments, making everyone late and frustrated.  Of course lab work results get lost.  Of course it’s all-day project for a disease I don’t like.

… of course I needed to make changes to improve convenience and access and reduce overall rage.  Quit complaining and make changes to improve the mess, right?  Right.

Over the last year, I’ve been testing out different doctors for primary care, OB/GYN, eyeball needs, and endocrinology.

  • Primary care has been a bust as the clinician I initially chose wasn’t a good fit at all.  (She wasn’t comfortable talking about anything related to diabetes, and I need to have a doctor who at least acknowledges that my pancreas is shit.)  But I have another option scheduled for January so hopefully that doctor will be a better partner in my care.  I’ve always wanted my PCP to be the center of my healthcare team, but so far, that’s been a no go.
  • I have always had a local OB/GYN but needed care in Boston for both pregnancies, so my OB/GYN team here in Rhode Island has historically handled everything but my babies.  Now that I’m firmly in the no more kids camp, I’m back to the team I’ve used since college.  All the clinicians in their practice are a good fit, so that’s all set. They’re terrific.
  • My dentist is awesome.  I’ve written about dental crap a bunch of times here, mostly because I have very sensitive teeth and am a HUGE baby when it comes to dental visits, but the right team and their compassionate expertise has made my visits to their office comfortable.  Dare I say FUN?  (No.  Not yet.  Maybe if they design cool grills?)
  • For eyeball needs, I’ve been going to the Beetham Eye Institute at Joslin.  I trust their expertise without question (despite having the diagnosis of a complicated eyeball told to the computer screen instead of to my face, but I’m not as angry about that anymore).  Oddly enough, though, my eye complications improved to “minimal” during my last pregnancy, taking me off the “every three months” list at Beetham and reducing me to yearly.  That, coupled with some recent corneal abrasions, drove me to find local eyeball care.  I am really grateful that I’ve secured a doctor who makes me feel comfortable that he’ll detect any issues and will refer me out to another specialist if he feels my complications are beyond his ability to manage.  THAT is the mark of an incredible clinician – taking good care of patients while simultaneously acknowledging their own human limitations.  This doc is a keeper.
  • And my endo has always been the core of my healthcare team.  At Joslin, I’ve worked my way through their slate of endos since my diagnosis back in 1986 – starting in peds, working my way into the adult clinic, moonlighting over at the pregnancy clinic a few times, and then returning to adult care.  The need to move my care hyper-local brought me to an endo in Rhode Island who, aside from being a shorter drive, totally gets it.  While we’re still in the weird “getting to know you” phase of patient/clinician interactions, I trust this endo because he has many years of expertise in type 1 diabetes and also because he views my opinions and goals as important as his own for me.  This is the kind of teamwork I enjoyed at Joslin, only minus the insane commute.  At my appointment yesterday, I had a good experience with the reception/labwork staff (more on why that matters later), my appointment started on schedule (11.30 am, not noon or noon-thirty), and my endo ran through my list of questions without dismissing them.  After a few more visits with this endo, I’ll consider myself officially weaned from Joslin.

Switching clinicians is stressful, for me, and I don’t enjoy all of these mystery dates.  But I’m getting close to a team that I feel can handle all the moving parts of my health AND they’re all within a 25 minute drive, and that feels pretty freaking good.

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