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”
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?”
Over the past few days, my world has been both directly and indirectly involved with situations where police were woefully unable to properly deal with mental health situations, one resulting in police brutality.
I’m pretty livid. I’m processing and my way of processing is writing, so here we go. This isn’t going to be well put together. But I need to get it out.
I share this because we need to keep being aware that these situations are happening, and are happening close to home. Continue reading “On the shitshow that is police and mental health issues.”
Since 2010, in lieu of New Year’s resolutions, I have chosen words to guide me for the year. In the start they were broader things like healthcare, money, relationships. Recently they’ve become more focused – realignment, growth, purpose. And with each word chosen, the universe delivered.
People generally love this idea. They ask me how I choose my word.
It takes months. It requires me to listen a lot. To observe what’s popping up in my life. To figure out what feels best in my gut. And to accept, without knowing specifics, that this word is going to be present in my life for a full twelve months.
They tell me I’m so lucky to actually get my words delivered upon.
They don’t realize how much self work it takes. That it takes bravery going into the year knowing that you’re going to be knocked on your ass to learn the lessons you’ve just asked for. Continue reading “2017: Voice”
Today 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.”
My little brother is 17. He’s tall and skinny, a track runner, with thick, dirty-blonde hair in the old Bieber side-sweep and bright blue eyes. He’s in high school in the deep south and is the picture of preppy, constantly decked out in Vineyard Vines and Polo.
When he was about eight years old, I was helping him clean out his email inbox when we stumbled across a message he had written to his “girlfriend” (I know, I know). I don’t remember the wording exactly, but it was something along the lines of,
*Girl’s name*, don’t talk to me. You will NOT say hi to me in class. You will NOT act like you’re my girlfriend when we’re at school. You can when we’re not at school. But you will not talk to me in public. You’re lucky to be my girlfriend, so you’re GOING to listen to me. Continue reading “On abuse, and why this election is several kicks in the gut.”
With the exception of “he wasn’t around,” I don’t talk about my biological father much, but I’ve had some *stuff* mulling around in my head and I’m feeling compelled to share. No, this is not going to be on my normal health topics. If you’re searching for that, Beyond Powerful is available on amazon, or you can read this or this. If you’re up to stick around, let’s carry on.
My dad’s name was Rick Jones. He married my mom when she was 18. I think he was 29. Or 27. Older than her at least, in a way that makes me wonder about the much older men that I dated when I was too young to do so, and why they didn’t put the brakes on our relationships either. Continue reading “Fathers be good to your daughters.”
“We’re all like, ‘What’s wrong with the girls? Why aren’t they eating? Why are they worried about their bodies?’ Are you kidding me? Maybe because every message they’ve gotten since they’re born is that in order to be a successful woman, you have to get smaller and quieter until you disappear.” – Glennon Doyle Melton
I am not a physically small person. I’m 5’9″, towering six inches above the world’s average woman. My shoulders are broad and strong, my hips wide, my thighs solid and touching on the inside. I wear a size 10 shoe. They don’t even carry my size in English stores – it was a problem when my flats broke when I was on business in Manchester. I am muscular, dense. Unfeminine? Continue reading “In which I shrink myself.”
I have a habit of jumping into a project so forcefully, and being so energetically open while I do so, that I throw myself completely off balance. For me, not only does that manifest mentally and spiritually – I get horribly drained – but physically. My health dive bombs.
Different schools of thought have defined it differently. Fair warning: I am a hippy, woo-woo, indigo child who also lives in the science-based, western medicine world. I see all of these things as essentially the same; just different definitions of the same things happening.
(no, this doesn’t mean I think that being energetically sensitive caused my type 1 diabetes. That was my immune system attacking my pancreas. But I do believe each of these things deserves equal attention.) Continue reading “On being an empath.”
Disclaimer: There’s a picture further down in this post that isn’t quite NSFW, but it might make you blush. It is of me. I don’t share it to be sexual, but so that you can have a better understanding of these things I wear on my body every day. After so long in the medical system I see my body as just that – a body. It’s been poked and prodded and treated like a medical experiment by me and by medical professionals. After a while of being sick, you start to see your body as separate from yourself. That said, if you don’t want to see a picture of my backside, don’t scroll all the way down. The non-backside including pic is directly below.
Invisible illness is a phrase thrown around in the chronic illness community a lot – it is a simple representation of a reality we live with every day.
These diseases we manage, no matter their weight, are hidden from most. On one hand it’s really great – I am privileged to not get pittying looks from strangers, I enjoy full mobility, and for the most part – unless I’m having a particularly rough day or purposely showing or talking about what I’m going through, no one will ever know that my body has been waging war on itself since I was 10. Continue reading “I hide my sickness from myself.”