Houston, I have a problem

I went down to Houston two weeks ago or my annual visit with my endocrinologist down there who tests me every year for my hypothyroidism and Hashimoto’s Thyroiditis, an autoimmune disease. Canada does not accept the T3 and T4 hormone levels for “normal” that are accepted in the US so millions of Canadians are walking around thinking their thyroid levels are normal when in fact they are either high or low. As a result, I have my dosages adjusted by Dr. Arem in Houston plus he prescribes bioidentical T3 supplementation that is unavailable in Canada. I recently applied to OHIP to cover the blood work and consultation in the US, which they denied.

If I had not gone to Houston, I would not have found out last week that I now have a new health problem – hypercalcemia and parathyroidism. Calcium is being leached from my bones and spilling into my blood stream due to non-cancerous tumours on my parathyroid glands which sit behind the thyroid, which is causing me no end of symptoms that I associated with my primary thyroid problem.

All this to say that if it were not for going to Houston and paying $3K out of my own [...] continue the story

Power Equality: Not Even on the Radar

Wednesday, 7 January 2015

Late last year I was pleased to be invited to attend a conference called “Reaching the Summit: Leading the way from Interprofessional Education to Practice”. Having patients included with educators and practitioners meant that the healthcare stakeholders sitting around the table were representative of more of the members involved in the health team.

It was a little disconcerting when I looked back at the list of Summit Registrants prior to writing this post and saw that under the title and the occupation columns the patients were all listed as “Patient Guests” in both columns. That seems to imply that our place is not secure – maybe it isn’t a given that patients will always be invited to participate.

We’re making the right connections At the event a large part of the afternoon was spent in breakout sessions, each one with a patient representative. The teams were composed of people working in hospital administration, in medical education, clinicians, allied professionals and, as at the IDEO Design Challenge, the variety of opinions led to strong and useful conclusions and strategies.

At one point in the session I commented that the very words ‘inter-professional collaboration’ on their own seem to exclude patients. With that [...] continue the story

Deb Maskens – Life on a Clinical Trial

Uploaded on Nov 5, 2009

Deb Maskens talks about how she is fighting stage 4 metastatic kidney cancer through participating in a clinical trial. Deb Maskens is the Vice Chair of Kidney Cancer Canada.

For more information about Kidney Cancer Canada visit their website or connect on Facebook and follow on Twitter.

 

LymeLight – The Story Of Professional Freeskier Angeli VanLaanen Living With Lyme Disease

From NEU PRODUCTIONS

LymeLight is a Lyme Disease awareness film that serves as an inspirational story for those who have fought to overcome chronic illness and physical setbacks. It delivers a powerful message of the importance of living a healthy, active lifestyle on a daily basis.

Angeli VanLaanen is one of the top female freeskiers in the world and a well rounded athlete with expertise in all areas of her sport. She has been featured on the cover of Skiing Magazine and in renowned skiing publications such as Powder Magazine and Freeskier Magazine. Angeli has also competed in high level halfpipe events such as the X-Games and Dew Tour.

LymeLight is a 30 minute documentary film based on Angeli VanLaanen’s battle with Lyme Disease. Angeli, now 27 years old, started showing Lyme symptoms at the tender age of 10. After developing a chronic sinus infection, fainting spells, dyslexia and fatigue, Angeli faced over a decade of misdiagnoses. Through the years, her symptoms fluctuated and progressed into a debilitating chronic illness. In the summer of 2009 VanLaanen was sleeping for multiple days at a time and experiencing crippling body pain. Lyme Disease is a bacterial infection spread by the bite of an infected Black [...] continue the story

Trickster, Dancer, Healer: Life Lessons in Chronic Medical Condition Management

I’ve checked my wireless continuous glucose monitor and adjusted the basal insulin rate on my pump accordingly for the activity level that I anticipate over the next 2 hours. I change from my running shoes into my weathered, muddy barn boots, grab the halter, a lead, a couple of treats and a dressage whip. The sky is silver-gray this morning as I approach the gate to the paddock, and the ground is wet. I call his name and he lifts his big white head and turns it to face me. The rest of him doesn’t move, just that long sinuous neck. He looks at me for a moment and then drops his head and goes back to eating hay from the flake at his feet. Knowing he will not come to me today, I open the gate and set out across the field to him, squishing through a mixture of mud, shit, weeds and straw that is wet from this morning’s rain, sinking to my ankles at every step. You can’t always have what you want when you want it, and sometimes you have to work harder for it.

The smell of barn swells up around me as I make my [...] continue the story

Happily Ever After My Diagnosis

On December 15th, 2009, I was matched up on eHarmony with a man named David (for the SECOND time – long story, I’ll explain later!!!). Being tired of waiting for the men to make the first move and message me first, I sent him my initial questions. I was a little surprised when he responded, but he did and shortly after that (January 23rd of 2010 to be exact) we started dating.

About a year later, in January of 2011, the symptoms started. It began with diarrhea and rapidly advanced to severe rectal bleeding. I told David that I was having some digestive issues, but didn’t mention the blood (I mean, who wants to tell their boyfriend about their bathroom habits!?). I thought it was a tummy bug on top of vicious hemorrhoids, so I ignored it. I started going to the bathroom 20+ times a day. Sometimes those bathroom visits would produce nothing but pools of blood in the bottom of the toilet. I finally went to the doctor at the end of January and by Valentine’s Day of 2011 I had my diagnosis of Ulcerative Colitis.

As I’ve browsed the message boards and support groups, I am overwhelmed with the [...] continue the story

Being a Patient Past Present & Future

By Kristen Knott

Written November 21, 2014

A year ago today I received my 6th and final chemo infusion. One breast, hairless head to toe, fatigued, sore and emotionally drained, I was fed up with being a cancer patient. The light at the end of the tunnel seemed almost out of view.

Now a year later, the anniversary has passed uneventfully with the usual mix of entertaining teenagers, both off for a PA day, addressing client emails and meeting a deadline for my Humber creative writing course; yet the entire time I quietly celebrated that I am no longer a patient. I question however, if I will ever stop fully being a patient in my head, as the role has profoundly changed who I am, and how I now approach my life.

As a cancer patient there was a sense of achievement and pride as I met and endured each treatment milestone, although I struggled with the lack of control over the present and future state of my health, it forced me to look hard, at my own mortality, an utterly terrifying notion to me. My body had been hijacked by cancer and I was at the mercy of this invisible enemy that only [...] continue the story

Jason Davis

Gang consultant Jason Davis on the impact of violence, on suicide, schizophrenia and bipolar diagnosis.

How autism freed me to be myself

Rosie King Rosie King challenges stereotypes of people with autism and contextualizes the issue by asking us, “Why be normal?” “Some people might call my obsession with facts boring. I call it FOCUS.” – Rosie King ABOUT ROSIE When she was nine years old, doctors confirmed Rosie King’s self-diagnosis of Asperger’s Syndrome. With two younger siblings severely affected by autism, Rosie had a burning desire to help make the world a more tolerant place for people with autism ever since she was a young girl. She found the opportunity to do so when her family was invited to do a local news segment on her mother’s children’s books that featured Rosie’s illustrations. Her lack of inhibition made her a natural presenter, and she was asked to host BBC Newsround’s special program “My Autism and Me,” bringing her a much wider audience and an Emmy Kid’s Award. Rosie continues to raise awareness about autism, and is working towards her goal of becoming a professional actress and storyteller. INTRIGUED? HERE’S MORE… If you could meet your 10-year-old self, what would you tell her?  I’d tell her the darkness won’t last forever, and that no matter how big and scary the monsters may seem you’ll find that one little spark of [...] continue the story

My father, locked in his body but soaring free

Published on Oct 19, 2014

At TEDMED, photographer Kitra Cahana shares a new visual language accompanying the extraordinary story of her father’s severe brainstem stroke, a catastrophe that transforms into an inspiring and imaginative spiritual journey.

What motivated you to speak at TEDMED?

It’s very difficult to express the sublime and the surreal in words and photographs. I wanted to attempt to communicate all that my family had experienced in the summer of 2011 – my father’s brain stem stroke, and the profound spiritual awakening that followed – with others. When my father first had his stroke, I wrote down these words, and whispered them to him when I first came to his bedside: “We only ever needed one pair of hands, two legs, a respiratory system to keep the world afloat between us.” This became my mantra. We can sustain ourselves through each other. This is what my father taught us; he said that all who came into his room of healing should expect to be healed themselves. Healing has to be mutual.

The stroke ruptured my reality as well as his. In those initial months, so devoted to his limp body and to allowing him to communicate all that was bursting to [...] continue the story