Category Archives: 4 Ostomates & the Chronically Awesome

This is the place to find all things ostomy & illness related: the good, the bad, & the ugly living with an ostomy and chronic illness, posts and writings on coping with the mental and physical challenges an ostomy & illness present, and links to related blogs, videos, and products.

Caringbridge Post 1 by Dominique

Posted on by
Reply

The last two years have been… stressful. Challenging. Full of shit, if I’m being honest.

And transcendent. Redemptive. Transformative.

I’ve gone through many challenges in my life – depression, losing my first love to cancer, allergies that refused to succumb to every treatment on the books, to name a few. Still, the last two years of my life rank among the most difficult. In part because, having come through so many challenges, I was supposed to be on the smooth sailing “easy” part of life. Or at least easier. Right? I mean, I got a lot of terrible shit out of the way early, so now it should be my time to thrive, right?

HA! No. So much for cosmic balance sheets…
These past few years have been notable not just for the amount of stressful events I’ve gone through – and there have been many – but also for the relentlessness of all of it. The weight of a chronic illness was always there; a dark cloud hovering over every moment. I constantly felt as if I couldn’t catch my breath. That as soon as I started to get a grip and move forward I’d get knocked back. And believe me, I’m well aware of the fact that it could have been worse, but I don’t aspire to delve into that inky abyss. It was bad enough. And I am so relieved that things are finally settling out. At least for the time being.
I’ve come through it. I’ve gotten to a place where I feel like I can restart my life. And I still hate that “what doesn’t kill you makes you stronger” BS. Every time someone says that to me I want to shout “Maybe I don’t WANT to be stronger! I’m strong enough, thanks!”

Yet, to quote Ani DiFranco: “Whoever said life is suffering, I think they had their finger on the pulse of joy. Ain’t the power of transcendence the greatest power that we can employ.”
What follows is part of my journey through transcendence of chronic illness written as I was going through it. I wrote these posts as part of my online Caringbridge journal to keep my family and friends updated on what was going on after years of suffering in near silence. A lot of my darkest moments are missing – the panic and isolation and anger. But I think it does a decent job of providing an honest glimpse at the experience of fighting my way back over the course of several months as they happened.

I hope that in these posts you can find something useful – the comfort of seeing some of your experiences in someone else, a sliver of light in the fog, the inspiration to keep going today, or to fight for the care you need and deserve, or just a distraction from your day, and I hope, at least a few good chuckles.

My journey is far from over. Transcendence is an every-day job. But it’s a job worth taking on. So I will continue to write about my experiences, my observations, the things that helped me move forward and keep going even when it felt like it was impossible. I will take inspiration and lessons from you to help me through. Together we can find a path that’s just a little easier and much more enjoyable.
Dominique
IMG_9140
“I try to laugh at whatever life brings” – Ani DiFranco As Is 
 

 

 

Back on the Scene, 2014 … with an Introduction

Posted on by
1
2013 was a busy year. Many inspiring moments, many not. I managed to stay out of hospitals, but not emergency or operating rooms. Much joy, much pain. Yin-Yang.

2014 I see as tabla rasa, my compass re-calibrated, goals refined and advanced, pen and lens in hand to immortalize and focus the moments that give me spiritual fuel, ambrosia, to live as wide and well as possible. Discovering inspiration in the good people and benevolent world around me is essential to that end. I’ve yet to write here for over a year, but I’ve found encouragement in a friend who may change that. Initially, I was lured in by her photography. Now, I’m inspired by her arduous journey of courageously confronting chronic illnesses with intelligence, grace, and humor.

I proudly introduce my friend, Dominique, who has graciously agreed to share her stories. Enjoy, and tune in soon for Dominique’s next installment!

Best,
Cary

Dominique here, introducing myself ~

image

When Cary asked me if I would be interested in writing for his blog, I felt both excitement and a sense of “who on earth gives a damn what I have to say?” After all, my particular expertise hardly applies (reproductive health research), and the experiences that do apply hardly make me an expert. Hell, I’m lucky to know which way is up some days. But I suppose what makes my voice valuable is simply how difficult my journey to come to terms with and manage my chronic illnesses has been, given that I’m particularly well equipped to deal with them.

What exactly does well equipped look like?

Certainly, my small frame and red hair give me no special powers for dealing with chronic illness. Neither, I’m afraid, do my freckles. On the other hand, my insatiable need to understand, and a particular interest in medicine and research – the one that led me to start shadowing a pediatrician at 13 and to take medical school classes despite deciding against going to medical school – have proved quite valuable. Because of these traits, I have a Master’s degree in Epidemiology – the science of researching the causes and treatments of health and disease – and I am currently working on my doctorate in Epidemiology. Well, I was working on my doctorate until my health deteriorated to the point I could barely stand, let alone focus long enough to get through an academic paper, and my department informed me I was going on medical leave.

Thus, up until the point I got stuck on the bench, my life’s work consisted of learning about the functioning and non-functioning of the human body, how to properly research these issues, and how to read and interpret the work of doctors and scientists. Doctors do not intimidate me and I am perfectly capable of understanding the medical literature as well or better than they do. I know much of the technical jargon and can research treatments and alternative protocols. I have few qualms advocating for myself and I am persistent to the point of stubbornness.

And yet, this is the first month in several years that I’ve felt like there is real hope for my future.

If I, with all of the advantages I’ve had starting out on my journey, still struggle to make it through the process of getting appropriate medical attention, accurate diagnoses, and actual progress, I’d say that dealing with chronic illness is a struggle for everyone. But it’s not impossible.

Much of what I have learned about getting a diagnosis, treatment, about getting through each day or hour, has come from other patients. Did my science and health background help me to get to the right diagnoses more quickly? Perhaps. Did they help me push for treatments likely to help? Sure. But none of it would have happened without other chronic illness patients pushing me in the right direction, inspiring me to keep going, and helping me find a way to get through this day. This hour. This minute.

And so, I hope to pay that favor forward. To help share some of my thoughts and experiences. To serve up my suggestions and ideas with a sprinkle of inspiration and, I hope, a heaping spoonful of humor!

Dominique

image-1