The problem with type 1 diabetes organizations (this is a rant).

Disclaimer that I have to put, even though – duh: all thoughts and opinions are my own and not that of my employer’s. 

There is no space for competition or animosity among diabetes organizations if any of us are actually truly aligned to our purpose – wiping diabetes off the map.

I have been involved with both JDRF and ADA since my type 1 diabetes diagnosis in 1997. I have done advocacy, hill visits, fundraising events and volunteered with both. When Beyond Type 1 was founded more recently, I hopped on their amazing community app, have shared their resources, and attend their events too.

I have worked for JDRF for a little over 2 years and have as much respect for this organization, ADA, and Beyond Type 1 as I always have. I STILL use each organization’s resources and go to each organization’s events. I donate to and fundraise for each.

I’ve found that almost anyone I talk to who actually has T1D knows that not only CAN these organizations coexist, but they should. Continue reading “The problem with type 1 diabetes organizations (this is a rant).”

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Diabetes + the inevitable eating disorder

Unpopular opinion time – I think having type 1 diabetes is a package deal with at least a low-grade eating disorder.

Even if most of the time we can have a healthy relationship with food, there are always the intense times when all the counting we did just didn’t add up and everything goes wrong. I know many of us have had the thought of “type 1 diabetes would be easy if I just didn’t have to eat.”

I’ve certainly had days when, after a week-long blood sugar roller coaster, I just gave up. It’d be water for the day because I could (usually) count on that to not affect my blood sugar, which I just couldn’t deal with anymore, but then after 20 hours of no food I snapped and ordered phad thai because fuck it.

Or, with a major low blood sugar that had me to the point I was shaking on the kitchen floor and could barely see, I would shove 4 sandwiches, a half-jar of nutella, and 6 packs of fruit gummies into my mouth before I felt like I wasn’t going to die. Continue reading “Diabetes + the inevitable eating disorder”

Sick doesn’t equal weak.

 

It’s been really interesting to watch how some people react to the idea of being sick, particularly when it comes to mental and chronic health issues. Having a body that doesn’t quite work the way everyone else’s does isn’t weak. It’s the most normal damn thing there is.

No one’s body works the same as anyone else’s. Some of our quirks are a little more pronounced than other’s, sure. But the same way someone has freckles, my pancreas doesn’t produce insulin. The same way someone has a thumb that bends all weird (you know what I’m talking about), my brain doesn’t produce enough serotonin.

It doesn’t make me weak. It makes me human.

It doesn’t make YOU weak. It makes you strong as fuck. Continue reading “Sick doesn’t equal weak.”

When my doctors don’t listen to my pain.

ONE
Before I was diagnosed with type 1 diabetes at age 10, I had been sick for months. Not eating, downing gallons of water and soda every day, lethargic, sleeping as much as possible, peeing every 30 minutes. In the last month before diagnosis, as I rapidly lost 30 pounds (on a 5’2″ frame), multiple doctors told my mom I was doing this on purpose – losing weight on purpose – to better fit in with my new classmates. I actually had an incurable autoimmune disease but, because I was a preteen girl, multiple doctors assumed I had an eating disorder. When I was finally diagnosed – by a nurse, as I was carried into the emergency room at 4am on Thanksgiving morning – I was likely less than hours from a permanent coma or death from severe diabetic ketoacidosis.

TWO
When I broke my ankle in 3 places while hiking when I was 26, I called 911 from the trail. I told them my ankle was broken (it was visibly broken – bone at odd angles and everything). They kept on insisting it was sprained. They took an hour to find me on the trail. When the EMTs walked up – and I mean SLOWLY walked up – as soon as they saw my ankle they sprang into action. “OH SHIT. Shit. We should’ve brought you pain meds. We didn’t bring the stretcher down with us. Can you hop?” Three places. My ankle was broken in three places. And I told them that. And they didn’t listen. Continue reading “When my doctors don’t listen to my pain.”

Being chronically ill but wanting to make a difference: the balance.

Three years ago today, I spent my day in a traditional Lakota sweat lodge. Two days prior, I had walked away from my corporate job with zero fallback plan.

Already in the midst of a major autoimmune crash, I was also doing work that was breaking my soul. I had been hired as the wellness communications specialist for a 15,000-employee company. The job description was everything I loved – creating messaging and programs to support and inspire health, educating around nutrition and wellness. What my position ended up being was spinning the company’s new high deductable healthcare plan. I could’ve just created the messaging being suggested to me – “Here’s all the ways this will be great for you and your family!”

Because I’m me, I instead started digging. I started running the numbers myself. I started going back to the vendors and actuaries and asking them to give me real-life scenarios I could illustrate so people could at least plan for what was actually coming. I found that, for anyone with any kind of chronic issue – asthma, diabetes, high blood pressure, depression, etc. – this plan was going to run them into the ground financially within the first three months of the year. It was a plan designed to cover emergency needs for otherwise healthy people. It was a plan designed to save the company money, not take care of its people so they can keep doing their jobs. Continue reading “Being chronically ill but wanting to make a difference: the balance.”

What it’s like to watch people die from your disease.

My immune system attacked my body when I was 10, resulting in a loss of ability to make a crucial hormone called insulin, which turns the food you eat into fuel for your body. Without insulin, the sugar from your food compounds in your blood stream, quickly poisoning you from within.

Before 1921, this event was a death sentence. The only “treatment” was starvation. Even over the last few decades, being diagnosed with this autoimmune disease meant shorter lifespans and drastic changes in what life could look like. Outcomes weren’t great. Complications were inevitable.

Technological advancements have made it so that I, by being born at the right time and into privileged circumstances, can not only live, but can live the life healthy-me would’ve lived too.

But the reality is, people still die from complications of type 1 diabetes all the time. And whenever I hear stories of it, I break down. When people die from this disease, it’s rarely from their own negligence. It’s mostly from simple mistakes – not realizing that what felt like the flu was actually diabetic ketoacidosis. Not waking up from a low blood sugar and dying in your sleep. Miscalculating how much medicine or food you would need when you’re out and about. Or, also commonly, from not having the money or resources to afford what you need to survive. Continue reading “What it’s like to watch people die from your disease.”

Being chronically ill in the age of resistance.

I’m worn out. Mentally. Physically. Drained.

Not more than anyone else. I get the times we’re living through right now. None of this is normal. We’re all feeling depleted.

It’s in a different way. Beyond the emotional and mental burden of everything happening in the United States right now, my immune system has been firing at insane rates again, and my body is breaking down. Again.

This isn’t new. This happens in cycles, multiple times throughout the year. Continue reading “Being chronically ill in the age of resistance.”

13 months without health insurance: a pre-existing condition nightmare

By now, you’ve heard that two nights ago, while the country slept, the Senate voted against measures that would keep key provisions of the Affordable Care Act in place. I believe this is short-sighted and dangerous, potentially leading to millions of Americans losing their healthcare coverage. I chose to write to my local congressional representative, and I encourage you to do the same.

Dear Congressman Donovan,

I’m sure you and your staff are being flooded with opinions on the Senates recent vote regarding the Affordable Care Act, so let me go ahead and add to the pile. I have lived in your district since February of last year, moving from Atlanta, GA to take a job. I’m lucky to be in a place now where I have wonderful healthcare provided by my employer and I am tremendously grateful for it. But for 13 months, before the Affordable Care Act and its provisions about coverage for people with pre-existing conditions was in place, I didn’t have health insurance. No amount of money could have gotten me coverage, because I have type 1 diabetes. Continue reading “13 months without health insurance: a pre-existing condition nightmare”

Does my disease make me a burden?

I’m in Barbados with my best friend, riding shotgun in her mom’s Jeep, guiding my hand and arm to ride a wave of air out the window as we jet down the highway from the west coast back to her family’s house in the south. It’s the last day of my holiday stay and we’ve been chatting about life. I’ve known Marielle since 2004. We met right at the start of our freshman year at the University of Miami and there’s not a lot we haven’t covered, but getting older and starting to approach all of the big life things that come with it has turned our tone a bit from our normal jokes and singing.

“This is awful to ask,” I say, “but is Down Syndrome hereditary? I realize that I don’t actually know much about it.”

Marielle’s little sister Natalie was born with Down Syndrome and, for as long as I’ve known Nats and likely for the full 27 years of her life, she’s been the the most glitter-and-pink obsessed person I’ve ever met. Their uncle Eddie had Down Syndrome too, until he died in late 2016.

“It’s not, so it’s always been interesting to me that we’ve two people in our family with it, so close together.” Continue reading “Does my disease make me a burden?”

19 years.

Lala Jackson T1DToday marks 19 years since my type 1 diabetes diagnosis. It’s meant a lot of needles. Guesswork when my life is on the line. Lost sleep. Insurance fights and ignorant doctors. Fear. An incredible weight that threatens to break me sometimes because this thing that so deeply affects my life and my well-being and my future is never going away.

But it’s also meant resilience. Empathy. Learning how to shine my light brighter for myself and others. Understanding the strength of my voice. Learning how to fight harder because, in so many cases, our lives depend on it. A deeper faith in myself and those who care for me. Having people in my life who seek to protect me in ways humans don’t typically have to do for one another.

But mostly, it’s meant learning that type 1 diabetes – that having a chronic illness – doesn’t define who I am. Continue reading “19 years.”