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.”
Don’t talk about us without us.
It’s a phrase I first heard from Maysoon Zayid, a Palestinian comedian who lives with cerebral palsy (whose story I told in my book) and is an advocate for representation – of Muslims, the disabled, and anyone else otherwise underrepresented – in media.
I’m fairly certain I shouted “YES!” at the screen when I read it. When it comes to living with chronic illness, I don’t want to hear or see the opinions of those who don’t live with this burden in places that are supposed to be held for us who do. It’s not that I don’t value them as people or value their opinion. But they have their own space – a lot of it – and they cannot fully understand what living in my space means. Well-intentioned opinions formed from lack of experience are useless at best and can be immensely damaging. Continue reading “Don’t talk about us without us.”
I’ve spent the last three days at my publisher’s home, nicknamed The Author Castle, outside of Washington, D.C. On Thursday, my book launched. Within the first 24 hours, my book ended up in the top 1,000 in the Amazon Kindle store and hit #1 in pain management in the US (#2 in Australia in the same category), #1 in disorders and diseases in Japan, #1 in chronic pain in Canada, and #1 in pain therapy in Germany. It also seems to be holding pretty strong in the high ranks for Social Sciences in both Japan and the UK. So yes, I am officially an International Best Selling Author. Continue reading “Published author, day 3”
Hi! Been a while, friend. You haven’t seen me on the blog or YouTube because I’ve been a bit busy writing my book (!!!) which is now complete and will publish on September 1. I’ll be posting more information about that soon!
In the meantime, I wanted to share a bit of the medical stuff I’ve been going through this summer in an effort to share with anyone who has been going through anything similar. I know there are many of you who have systems that don’t seem to cooperate, who are in a lot of pain, who are constantly exhausted, who seem to be sensitive to absolutely everything – heat, food, noise, whatever else. Consider me your guinea pig. Continue reading “Eastern vs. Western Medicine”