I am never naked.

If you scroll down in this post, you’re going to see a topless/nearly naked picture of me, as well as a few others that show quite a bit of skin. They are meant to challenge you to think about what I’m about to write. Please read first, then scroll if you want (but do not scroll if you think mostly nude photos of me will offend you).

I was diagnosed with type 1 diabetes at age 10. It meant that, at the age of 10, my body was no longer my own. It became the property of diabetes, of medicine, of science, of the devices it takes to keep me alive.

When I was first diagnosed and still in the intensive care unit, every part of my body was poked and prodded. I ended up with an IV in one of my jugular veins because none of the rest of my veins were stable enough to support a line. My clothes had been ripped off my body to make it more accessible to save. My necklace had been cut from throat so it didn’t get in the way. My body was just that – a body to save. Not a person. Not my own.  Continue reading “I am never naked.”

That tricky little bastard, serotonin.

One of the most important tools in the understanding-my-brain arsenal is pure science. It makes it all more manageable for me if I know why something is happening on a basic bodily function level.

In a previous post, I talked about having a chronic mental illness called dysthymia – it’s a chronic form of depression that I’ve had since I was 12 in which my brain doesn’t produce enough serotonin. I used to manage my body’s ability to produce enough of it – since it affects feelings of well-being, mood stabilization, and digestion (your body produces serotonin in your brain and all throughout your digestive tract) – with medications called SSRIs (selective serotonin reuptake inhibitors).  Continue reading “That tricky little bastard, serotonin.”

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.”

I’ve been depressed since I was 12.

Lora Zombie
“Rainy” by Lora Zombie

 

The most common comment I get since moving to New York City a year ago is that I am too positive for this city and that it will change me. My response every time is that I have worked too hard for my joy, and it isn’t going anywhere.

But I realize that people probably don’t know what that really means. That, when people see me being positive, they assume it’s an inherent trait – one that exists just because it’s who I am.

They don’t realize that I actually have clinical depression – dysthymia, specifically. That the chemicals in my brain are not wired for me to feel okay and that when I say I’ve worked hard for my positivity, I mean it. Literally how I eat, my exercise, my daily habits, my alone time – not only are they built to support my physical health, but my mental health too.

My happiness, my positivity is a choice, but it’s one that I had to learn how to make over years upon years of work, not only personally but with the help of doctors, clinicians, counselors, nutritionists and, at times, medication. Because – just like how my body does not make insulin, it doesn’t create enough serotonin, the chemical that helps contribute to feelings of well-being and happiness. Everything can be going right but without serotonin, my brain does not have the ability to recognize it. Continue reading “I’ve been depressed since I was 12.”

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.”

Have no idea what I’m talking about when I say ‘spoonie’?

As I develop content for my book, publishing in September 2016, you’re going to keep hearing me refer to this thing called a “spoonie.” Nope, not a trekkie. Not some weird reference to cuddling. It’s a way people with chronic disease describe ourselves, and here’s why. Continue reading “Have no idea what I’m talking about when I say ‘spoonie’?”