Sick doesn’t equal weak.

Sick Doesn't Equal WeakIt’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.”

What my fibromyalgia feels like.

While not exhaustive, this post is meant for you – the person who is trying to figure out exactly what’s causing you so much pain, the person who is looking for answers after a fibromyalgia diagnosis, the person who is trying to find better ways to care for your body.

I’m going to try to be as thorough as possible and share what has helped me, but different things can help you. Do your research. Consult doctors and wellness professionals but know that you know your body best. Look into patterns. Keep food and activity journals.

Just like with my type 1 diabetes, my fibromyalgia is a game of data. I have specifically engineered my life – what I eat, my activity levels, my exercise, and more – to gain control of my health. You can too (and no, I didn’t just meant to sound like a motivational poster. I just legitimately know that you got this. It’s hard, but you do.)

On my worst days, noises cause me pain. I’ll hear a car horn blaring and it feels like every nerve ending in my body has been set off. I’ll try to tense and release my muscles – my calves, my thighs, my forearms – as a distraction, but it’s like the sound waves are reverberating through my body and there’s nothing I can do to stop them.

On my best days, it’s like I’ve never been sick. The human brain is a wonderful thing and tends not to hold on to pain if we train it to do so. People will ask me how often I have pain flares and I can cheerfully answer, “Oh! Not more than, I dunno, once every few months? It’s not awful.”

In reality, I have pain and inflammation flares once every few weeks. Some are worse than others. Sometimes I’ll just wake up with pain – a lulling ache in my muscles, sharp pains in my joints and the typical fibromyalgia pain points (all of which flare for me) – feeling foggy and lethargic, my brain chemicals doing everything but helping my mood, but my symptoms will level out by midday and I’ll be back to feeling like myself. Sometimes the flare lasts a month or more and I’ll be working from bed most days, willing my joints to stop feeling like they’re on fire, avoiding eating for as long as possible because anything I consume seems like it sends me into further inflammation. Continue reading “What my fibromyalgia feels like.”

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.”

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.”