Valleys: Episode 1 — “A Two-Edged Sword”

Published on Apr 3, 2013

The life changing journey begins. Meet Amy, her family and her best friend Annie as they all talk about the communication challenges they are facing because of cancer. Amy reflects on the past year and the new upcoming chemo treatments she is going back to… will she be able to accomplish what she set out to do on the mighty Colorado River?

More Episodes of Valleys

The Master Patient

My name is Sarah and my journey is 25 years in the making.

I am a recent graduate with a MA in Sociology specializing in Families, Health and Well-being and a long time patient of the Canadian health care system. I started this project in late 2012, shortly after relocating to Toronto, Ontario with my sister and our three cats Isabelle, Teddy and Oliver. Initially, writing was a means to continue my journey of self discovery post-institution and sharpen my skills of analysis and introspection, while searching for a “real life career”. I deeply miss the engaging discussions, problem solving and critical thinking that I experienced with my professors and peers during grad school and this project has helped me retain some of that. Over the last seven years I have volunteered with numerous health care and health related organizations – trying to gain experiences, knowledge and understanding from others. I love animals, nature and travelling, the latter of which I hope to do more of in the future. My kitten Isabelle sitting on my laptop

I was diagnosed with Marfan syndrome, a genetic connective tissue disorder, when I was two and a half years old. Living with this chronic illness has meant [...] continue the story

Molly’s P.INK Tattoo

Personal Ink (P.INK)

P.INK provides tattoo inspirations, ideas, and artist info to breast cancer survivors. To share or pin your own stories, design ideas, and favorite artists, email help@p-ink.org.

It’s difficult to overstate how difficult breast cancer can be for the sufferer, and surviving it can be especially challenging if surgery has left patients with scars, amputations or other changes to their body. Now, the P.INK campaign aims to use decorative tattooing to help women cover up marks, forge community bonds and increase self-esteem.

The platform operates as a Pinterest group, where users can post their own stories about dealing with breast cancer, show off tattoos they already have and share design ideas for others. The pinboard, which was set up by advertising agency Crispin Porter + Bugowsky and social cause marketing firm David Clarke Cause, already details the journey of Molly, who was left with scarred nipples after a mastectomy and had trouble finding resources relevant to her ideas for tattooing the area. P.INK aims to provide a resource for those like Molly, connecting them with tattoo artists with experience of breast inking and creative types with ideas for designs, as well as with others in a similar situation. Users can then [...] continue the story

Stanford Medicine X in conversation with Katie McCurdy

Stanford Medical Student Joyce Ho has a conversation with user experience designer Katie McCurdy on self-tracking.

More from Katie McCurdy – [sensical]

Medical history timeline: a tool for doctor visit storytelling

Originally Posted on January 3, 2012

By: Katie McCurdy

This is a follow-up to my last post, in which I described how visualizing one’s own medical symptoms and progress in the form of a timeline (in addition to other visualization formats) might help people better understand what is happening to them – and help them communicate with health care practitioners.

I recently took a print-out of my own medical timeline (which I had created from memory) to a new Doctor I was seeing, hoping that the visualization of my symptoms and medications would help him better understand what I was experiencing and thus better understand how to treat me. The new doctor was Dr. Richard Ash, a medical doctor in NYC who is known for embracing alternative therapies.

As it turned out, he spent less time with the visualization than I had expected. Because he had seen similar complications in the past, he felt confident that he knew what was going on with me before I even had a chance to show him the timeline. I also realized that Doctors and their staff communicate through their own language of scribbles and shorthand, and they wouldn’t necessarily want to take any extra time during an office [...] continue the story

How visualizing health problems could help solve medical mysteries

Originally Posted on November 16, 2011

By: Katie McCurdy

This week I’ve taken on the task of visualizing my own medical history and symptoms, in hopes of making the most of my appointment with a new doctor. Below is the full story (and visualizations are at the bottom).

My medical story: the background

BEFORE: Me, circa late 80s, with full smile functionality

AFTER: this picture is so awesome in so, so many ways. My family, circa 1993; I am the one in the top middle, with poor smiling power. One early winter day when I was 13, I was sitting at the dinner table with my family laughing at something my brother had said.  My mom stared at me and asked why I was making that face.  “What face?” I said. She said my smile looked different, like a grimace. I ran to look in the mirror in the bathroom. I looked into the mirror and smiled back at myself, but it was like the corners of my mouth wouldn’t stretch to the sides. I looked more like a dog baring its teeth.

Such began my voyage with the auto-immune disease, Myasthenia Gravis. This non-degenerative disease causes muscle weakness, mostly in voluntary muscles, and often affecting facial [...] continue the story

It’s All About Control

10 ways to maintain a sense of Control with a chronic illness

It’s easier to cope with chronic illness if you feel that you have some control over your life and your health. Feeling that everything is just spinning away from you makes life more difficult. Here are my first and best so far ideas. More suggestions are always welcome for a list like this. Please leave them in the comments. We all love to hear tips.

With chronic illness you are forced to be your health manager so it is up to you to gather information and to make better decisions. You need to learn skills for this complex task as you go along, because the days of good health and no worries are behind you, though there is always the hope of having them return. As you go along you will find a management style you are comfortable with.

The first suggestion I would make is to join an online group or community.  They can be a great source of information and encouragement.  It’s harder to find a physical real-time group than one that is on-line. It is also easier to spare the time for online efforts. Yahoo has a more old-school [...] continue the story

Health Mentor – Season One – Episode 3 – Zal

By: Zal Press

The word “stigma” makes my blood boil.

The session started out with questions about my hospital discharge experiences. For the first 6-8 years of my illness I was in and out of hospital like a revolving door. On discharge I would be visited by a dietician who would give me a standard “low residue” list of foods. Basically stuff to stay away from that would get stuck in my gut and give me an obstruction. The amusing part of this list is that it was the same one year after year and became increasingly blurry as a result of generations of copied copies. I saw this same sheet for almost 20 years.

At some point in the conversation we started on the subject of access and equity of treatment. My medication costs $33,000 a year and I constantly worry about continuing availability of coverage and access to treatment. What will happen to me when I turn 65 in 3.5 years and the Ontario Drug Benefit Plan takes over my medication coverage? Will a debt laden government refuse coverage? Will a bureaucrat decide that it would be cheaper for the system to do surgery than medicate? I worry about those suffering [...] continue the story

Health Mentor – Season One – Episode 3 – Annette

By: Annette McKinnon

I arrived for the final session and had no trouble finding the students. Because of bad weather and flu 2 were missing so the remaining three started with the questions.

This module was about Patient and Client Safety, so in a way, with no hospital stays and discharges I have had it easier than some. We got into a discussion of how the ordinary preventative medicine can be overlooked in a patient with chronic illness when the focus is always on the main problem. Referrals are not always made to associated disciplines either when all of the time is taken up with questions and concerns

In the past I have been one of the patients with a long list of prioritized immediate concerns that I knew there was no chance of getting through.

When we got to a discussion about pain my feeling was that many patients want to hear the health care professional acknowledge that their pain is real. Next they want to have it treated, often with an effective prescription. After that there are other ways to deal with pain that can include a pain clinic, a self management program and educating themselves about their disease. Of course the [...] continue the story

Warning Pains, Coumadin, and Recovery

It was the best week of skiing I had had all season. The Wasatch had accumulated 24+ inches of Utah’s finest and I was LOVING life. I was unemployed, going to school twice a week and had plenty of time and friends to do what I do best; stomp into my skis and hit the mountains with a smile on my face. I got freshies at Solitude, toured up Big Cottonwood and skied Powder Mountain with a good friend.

Top of James Peak 9422′ As I hiked I started to feel a weird pinch on my right side under my rib cage. The sensation caused me to pause for a moment or two to wonder what it was, but I continued slogging, thinking nothing of it. A small cliff with wet snow made me crash once on the descent, but even that didn’t seem like a big deal. We skied until close and drove home sunburned and happy.

I tossed and turned all night. The side I usually slept on felt oddly uncomfortable and I woke continuously to roll to my other side. As my feet hit the floor the next morning, I knew something was up. Pain shot up my right side, [...] continue the story