Coming Out

So, after 40 years of following the first rule of T1D Club: Don’t talk about T1D, and disseminating the information that I live with this condition on a need-to-know basis only, this has been an emotionally challenging week for me.  ‘Coming out’ as a person living with T1D in a very public way, using my August 14 gig as a vehicle to end the secrecy and raise awareness feels terrifying. What will people think of me now? What will the reaction be?  The reason I went underground in the first place was to avoid dealing with people’s adverse reactions to finding out: The uneducated, unsophisticated, unsolicited and dangerous healthcare advice (“Don’t eat anything with gluten”; “Stop eating any carbohydrates”; “Take (choose one: garlic/vitamin E/Omega 3/ St. John’s Wort) supplements and you won’t need insulin”; “You aren’t allowed to have sugar, so I’m not going to give you that orange juice you just asked me for, even if you say you are having an insulin reaction”; and so on, ad nauseum); The fear and exclusion: (“Lynda can’t come to the sleepover because she might die in the night and spoil the party”; “I (teacher) can’t possibly take Lynda on the field trip; I have [...] continue the story

Still Standing on my Original Two Feet

August 29 – My Coma Day August 29, 2013, is the 40th anniversary of my Coma Day — the day I spent in a coma while my doctors tried to figure out what was wrong with me.  Turned out it was Type 1 Diabetes, and they were able to bring me back to consciousness the next day.  Every year on that day, I celebrate another year of surviving and thriving in spite of all the dire predictions I was given by the medical community during my slow, painful progress back to a point where I could be released from hospital (I think it was a few months, but it was so long ago, and I was so young, I think I have skipped over that in my memory to a great degree).  In a nutshell, it went something like this: You will never:             live past 40             have kids             be able to participate in sports             be healthy             be normal             be able to manage a challenging job You will:.             have your feet and legs amputated             lose kidney function and need transplants and dialysis             have heart disease and multiple heart attacks             go blind             spend a lot of time in hospital             die young …and so on…. As this milestone [...] continue the story

Stories @CSI: Patient Commando is improving healthcare outcomes through patient narratives

By Lisa Ferguson, CSI Reporter

Actor Daniel Stolfi was undergoing chemotherapy treatment when he started writing a one-man comedy show about cancer. His friends and family thought he was crazy. No one was going to laugh at cancer, they told him.

While there’s nothing funny about cancer, Daniel’s story of his experience with it is. It’s also powerful and moving. By sharing what he went through—losing, at age 25, his hair, appetite, strength, sex drive, even his desire to dance—Daniel is helping healthcare professionals like those who watched him perform recently at Toronto’s Sunnybrook Hospital to view their patient as more than a symptom or a condition. Such understanding can improve doctor-patient relationships and, in turn, patient outcomes.

Performances like Daniel’s are part of the modus operandi of Patient Commando, a patient advocacy group founded in Toronto in 2010 by Executive Director Zal Press, who has his own story of battling illness.

Zal has lived with Crohn’s disease, a chronic inflammatory bowel illness, for over 30 years. For many of those years he was “the typically unengaged patient,” taking pills and doing what the doctor told him to. He was in and out of hospital, tried different types of treatments, and had surgery.

About eight [...] continue the story

Suicide or psychedlics – what would you choose?

If the choice were suicide or psychedelics, what would you choose?

Psychedelic mushrooms are an unlikely friend in the battle against incredibly painful cluster headaches.

PERIPLUS: A Review of Passage to Nirvana by Lee Carlson

I was compelled to begin this review having not yet finished the last page. Perhaps it’s that while the “end” is important in some way, no less – or perhaps even more significant and relevant – is the inspiration at any moment in Passage to Nirvana.

An unconventional autobiography, we come to know Carlson as he comes to know himself again after an ironically-charged event leaves him to live a life transformed irreparably by Traumatic Brain Injury. It is the story of a writer, now struggling with writing, writing to heal, writing to learn, writing to share the specific and the universal of our human condition. Carlson’s observations and narrations undulate, integrating the realms of life – inspiration, challenge, spirituality, reality, cause+effect, expanding one’s experience of mind, body and soul. It is in his authenticity, his meeting and telling of truths, in this unselfconsciousness that one finds one’s own comfort in being, in one’s own (auto)biography and condition.

I knew Lee prior to this book. But, I did not know him well. And wish I had had the opportunity. Our paths crossed through the familial lines, sometimes leading to light conversations, but as I recall, mostly short and simple pleasantries or greetings. I was not aware of the depth of his Zenness, the richness [...] continue the story

Anne Marie Cerato

Anne Marie Cerato 4-Year Lung Cancer Survivor

Patient Advocate and Speaker

I am living with stage 4 Lung Cancer. A little over a year ago, I was certain that my life would be cut short and I doubted I’d see my 35th birthday. Thanks to a targeted treatment I’m looking past 40, my condition although incurable is now manageable and chronic, not terminal.

One of the most challenging parts of this journey has been the isolation I felt, during and after treatment, both as a Lung Cancer patient but also as a Young Adult. Even living in a world-class city like Toronto, I found it incredibly difficult to find the resources and outlets I needed as a Young Adult living with Lung Cancer. After having experienced the stigma and isolation of having this condition I decided I would do something to change things for the better.

I began These Are My Scars to provide other young adults with a place and the tools to see their own scars in a new light. Through this new perspective, we hope that individuals are able to heal from the deeper emotional scars emanating from the cancer experience. This personal project has led me into Patient Advocacy and [...] continue the story

Gail Attara, President and CEO, Gastrointestinal Society (GI Society)

Gail Attara, President and CEO, Gastrointestinal Society (GI Society) www.badgut.org | www.mauxdeventre.org With offices in Vancouver, Toronto, and Montreal, the GI Society supports Canadians with a full range of resources in the sorely neglected gastrointestinal health area. Gail Attara began in 1996 as Executive Director of the organization’s sister charity, the Canadian Society of Intestinal Research (CSIR). She led the organization from a small BC charity into a national presence, accounting for the largest growth period since inception in 1976, before co-founding the GI Society in 2008 and now serving as its president and chief executive officer.

Gail’s motto, “The patient comes first,” directs her leadership of the GI Society, as she advocates on behalf of patients to promote patient-focused health care and for a wider public awareness of digestive illnesses that affect as many as 20 million Canadians.

Government, non-profit, media, medical, and corporate stakeholders in GI health regularly seek out Gail for consultations and speaking engagements from coast to coast, where she is known for captivating listeners with her straightforward and engaging style.

Gail has a sound background in public relations and fundraising, and she is also a published freelance author and artist. She is an active community volunteer in Canada and overseas, [...] continue the story

Holly Bridges

Holly Bridges Three years ago, I was diagnosed with uterine fibroids (non-cancerous tumours facing 1 in 4 women and are the leading cause of hysterectomy in Canada) and told that hysterectomy was my only option.

Today, I am pain-free and period-free, with all my reproductive organs intact, thanks to a gynecologist I found through

my own research, who performed two of the most high tech, state-of-the-art procedures available in the world today – a hysteroscopic myomectomy and hysteroscopic endometrial ablation.  Women should not have to rely on their own detective skills to get the best possible outcomes for the medical conditions that threaten their well-being.

So what?

Every year in North America, some 700,000 women (650,000 American and 50,000 Canadian) undergo hysterectomy and of those, 60 and 80 per cent of those hysterectomies are medically unnecessary, performed for benign conditions such as uterine fibroids, cysts, polyps, adenomyosis and the most crippling of all benign conditions, endometriosis.

The reason I am so passionate about helping women become more aware of minimally invasive medical and surgical options is they present outcomes for women that are:

Less painful Less risky Less invasive Less expensive

I wrote The UnHysterectomy and started my online community as a resource for women to learn, connect and share about their own [...] continue the story

Anna Brundage

Anna Brundage Anna Brundage  is an accomplished and respected Diabetes Nurse Educator. She is the recipient of the Diabetes Educator of the Year Award from the Banting and Best Diabetes Centre and the recipient of the Honourary Lifetime award from the Canadian Diabetes Association in the Diabetes Educator Section. The DES grants honorary lifetime membership to recognize active DES members whose longstanding excellence in practice and significant contributions have improved the quality of life for people affected by diabetes.

Anna is co-founder of the T1 Think Tank, a highly specialized collaboration of Patient Leaders and Healthcare Professionals focused on Type 1 Diabetes. The T1 Think Tank has 3 main objectives: 1) Improve communication between Patients and Healthcare providers. 2) Elevate the Standard of Care provided to Type 1 Diabetes 3) Empower patients with skills for better self-management of Type 1 Diabetes (Editor’s Note: True to her tradition, Anna did not reply to our request for information. The picture we chose to represent her reminds us of her life’s work and the constant balancing act that diabetes management demands from those living with the condition. Anna’s modesty and humility is well known. Yet the impact she’s had on literally thousands of people living with diabetes over her long [...] continue the story