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Posts tagged ‘type 1 diabetes’

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.  

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.

 

Tandem X2 with Dexcom G5 Update

[Please read my Tandem disclosure.  I was not asked to write this post.  But I need to disclose anyway, because it felt weird not to.]

Even though the update email came in a few days ago, I didn’t have a chance to update my Tandem X2 insulin pump until yesterday afternoon.  My original intentions were to sit down (preferably with a cup of tea and my reading glasses, so I could look the part of “focused” which would hopefully, in turn, become real focus) and update my pump in a relaxed environment, but that’s not a thing in my house anymore.  Every time I went to update the pump, the little Guy needed a snack or Birdzone wanted to play Spit (she kicks my butt regularly) or one of the neighborhood kids would roll through the house or the phone would ring or … the list of distractions remains long.

So I had to just sit down at the kitchen table and update the damn thing, house tornado be damned.

It was easy.  Thankfully, because I was only able to keep half an eyeball on the process as it unfolded.

The information I needed – my pump’s serial number and my “update ID number” – was in the email from Tandem Device Updater (if you’re looking for it in your inbox), so once I downloaded the device updater software to my computer, it took just a few minutes to update my pump.  I plugged my pump into the charger and then stuck the charger into the computer’s USB port, followed the prompts, and let my pump get pumpier.

The device updater

I knew the pump was ready to roll once this screen came up –
the update ID from the email went here.

Once the pump was plugged in, this screen popped up.

“Whoa, your pump updates like an iPhone?”  The 13 year old boy who lives down the street asked.

“It does,” I said, watching the blue progress line for the update move across my computer screen.

“That’s cool,” he said.

Truth.  My X2 now grabs Dexcom G5 results and shows them on the pump.  And I’m still learning the ropes with this new update.  In total, the update took about 15 minutes to work through.  I decided to wait until I was ready for a site change because in doing the update, I’d need to swap everything out anyway, and would also have my IOB set back to zero.

I have my iPhone running the G5 app in addition to the pump, and both appear to be working fine.  I was concerned about battery life after making the update, but since it’s been less than 24 hours since updating, I’ll have to come back to that at another time.


Updated!!

What was nice, though, is that my CGM was already up and running on my phone before I updated my pump, so when the update completed on my pump, the CGM results showed up immediately.  It didn’t seem like I had to independently calibrate my pump and my Dexcom phone app.  I’m rebooting my CGM sensor as I type this, so I’ll have a better sense of how this all works in a few hours.  In addition to CGM functionality and battery life, I’m really curious to see what the payment/update reimbursement structure will look like for future updates.  The G5 update was free.

The bottom line, for me, is that updates are available for my insulin pump that don’t require me to wait for a FedEx box to arrive before I can access them, and that’s damn convenient.  Having a pump that can be updated from my house while dinner is cooking (read: burning), kids are running amuck, and emails are dinging makes diabetes fit better into my life … in that I don’t have to organize my life around diabetes.

Break Glass in Case of Emergency

The low alarm goes off and my arm snakes out from underneath the covers in slow motion, a serpent in search of snacks.

The jar of glucose tabs sits on my bedside table, most often collecting dust but on this night, it’s an essential item.  I flip open the lid and count out four tabs, piling them on the side of the bed and chomping down one of them while I lean on one arm.

Chomp, chomp, chomp.

Seems like I’m peckish instead of panicked.  But the room is spinning a little and my peripheral vision comes and goes while the low blood sugar laps at the edge of my ability to reason.  What time is it?  Are the kids still asleep?  Siah is a fat lump at the end of the bed, one eye open and staring at me while I cram another tab into my mouth.  I’m confused about the day and time but I know exactly how to put the glucose tabs into a precisely stacked pile and slowly work my way through them, hoping they work quickly.  My husband is asleep, unaware that anything out of the ordinary is happening.

Chomp, chomp, chomp at 3 am after the blaring of my Dexcom alarm, the jar of tabs literal lifesavers on the bedside table.

In Sickness and in Health: My Partner Has Diabetes.

A week or two ago, I received a message from a reader asking about the influence diabetes has on my marriage.  I took to Facebook to get some broader feedback, but the question forced me to drop into the weeds to see how my diabetes touches my marriage.  This will be part one of a two part post, with today’s focus on the people in a relationship who are in a relationship with someone who has diabetes.  Read yesterday’s post here.

As the person in my marriage who hosts diabetes, I struggle to see things from the other side.  Which is why I’m really grateful for the partners of PWD who offered their take on diabetes and marriage, because it’s some great insight on what diabetes looks like “from the other side.”  Whether diabetes was part of the family before the wedding or came into effect after the vows, diabetes can add some intensity to the relationship equation.

Brian “married into diabetes” and shared some thoughts with me. “[My wife] Laura was diagnosed really early in our dating relationship, so it’s something we learned about and have always dealt with together. It certainly tested and proved our bond in the beginning. Now that we’ve been married (almost) six years, it’s simply a part of our lives.  I’d say the biggest struggle for me is that we generally are partners in everything we do. But with diabetes, no matter how supportive I am and how much I try to help, we’re never really partners because it is always hers to deal with. No matter how much we confront it together, she is always facing it alone.”

A female friend who wanted to remain anonymous said, “My husband has had T1D for 25 years and we’ve been married for 9. Diabetes doesn’t necessarily affect our marriage in a tangible way. It’s an underlying current. It’s little things like having to stop for juice 10 minutes into a family road trip, wondering if he’s cranky because he had a bad day or if he’s high or low, or whether the insulin pen he left on the kitchen counter is the long-lasting one or the one he should have taken to work. It’s developing the ability to know if he’s low simply by the look in his eyes. It’s understanding that he always gets low when he mows the lawn. Other than the absolute horror show of having to deal with our insurance, I feel like we do a pretty good job of not letting it affect our everyday life. But we also try to understand that, no matter what, it affects his everyday life.”

Meredith is married to Harry (who has T1D), and they have a daughter close to Birdy’s age.  Meredith said, “It makes me worry. Not just worry about the future, but everyday things. When Harry goes on a business trip or I am away from him at night I worry about low blood sugar. He doesn’t always hear his alarms at night and so I worry about what could happen when I’m not there. I also worry when he works out (which you know is often). If I text and he doesn’t answer or if he’s gone longer then I think he should be my mind almost always goes to BS problems. I still have the regular spouse worries, like normal accidents, but his diabetes adds to that and I’m already a worrier. I think it drives him crazy.”

I’ve thought about this before, the whole “what if it was Chris and not me who had diabetes.”  I know I would nag the absolute shit out of him and would also worry a lot. That’s my role (in life?) – to worry.  And if someone other than me was living with diabetes, I’d worry incessantly about them.  Preferring to have diabetes myself isn’t heroic, but selfish because I’d worry myself into a stupor if it were anyone other than me.

Another woman, who asked to post her comments anonymously, refers to her husband’s diabetes as the third wheel. “We often call [his] diabetes the third wheel in our marriage. It’s always there and challenges our relationship often. [My husband] has a very different demeanor when he’s high, which requires a lot of my patience and to be honest- with two kids under 4, I don’t have any extra patience. So I’m not as kind and forgiving as I should be.”

Sometimes both partners have diabetes, which can add an extra layer of both understanding and of stress.  Kelley was married to someone with type 1 diabetes, and the influence on their relationship was not entirely positive.  She said, “Type 1 very much strained my marriage of 11 years to another type 1. He had hypoglycemia induced seizures along with hypo unawareness. He never wanted to wear his sensor, and it got to the point where I would refuse to leave our sons with him alone for long periods of time. I made sure both of us had insulin and supplies, I made sure our blood work was done, that alcohol wipes and tape were on the shelf where he liked them, and that there were always 2 glucagon pens in the house. I was the one that would argue with him and force feed him glucose gel or tabs, and the one that called 911 if things went too far south for my nursing skills to handle.”

“It caused a lot of resentment and frustration, and made me feel thankful for my own diabetes being easier to manage,” she continued.  “Now that we are divorced, our oldest son has taken on some of the burdens I used to shoulder, and has had a cell phone since the age of 7 to help him with all of this.”

When I was growing up, I didn’t know many other people with diabetes, but in the last 12 years, I’ve made up for lost time.  Which  means I have a lot of “diabetes friends,” which in turn produces a lot of love and a lot of worry.  I’ve never dated someone else with diabetes, but I’ve wondered what that would be like.

Kelley has strong opinions about this.  “I told myself I would never date or marry another type 1 as our marriage began to dissolve. And I have stuck to this. My new partner follows my Dexcom, makes sure I have plenty of insulin in the fridge and fruit snacks and grape glucose tabs in the night stand. I never realized how much I loved being taken care of. I have experienced both ends of the spectrum.”

But it can go either way, as with anything.  By contrast, my friends Chris and Dayle both have type 1, they are married, and they actually met through the diabetes community.  Diabetes is woven around different parts of their relationship, as Chris recounted.

“So do we talk about the dresser devoted exclusively to diabetes supplies?” Chris shared on my Facebook thread.  “The conversations about insurance? The cupcakes? The races to see who finishes their TSA patdowns first? The fact that juice boxes made it into our vows? I think we kinda stacked the deck with both of us having diabetes”

Dayle has a similar outlook, through a lens of humor.  “When Chris and I first met, I was actually dating a different pwd. But he was weird in that he actually changed his lancet for every. Single. BG test. So Christopher was a welcome change.”

Reading through people’s responses really opened my eyes to what it might be like to have diabetes on the other side of my marriage, and made me grateful for the people who live with and love someone with diabetes.  I know that when I’m frustrated with my own diabetes, it’s the steady and calming influence of my husband who keeps me from throwing my meter across the room and watching it shatter into a thousand pieces.

Which is a useful skill, since cats and kids alike might try to eat the little broken meter pieces.

Thank you to everyone who decided to share their thoughts on diabetes and marriage. Your perspectives are valued, appreciated, and comforting.

 

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