Stepping Back From the Edge

By Bill Ventres 12/16/2011

  I can walk.

It’s not pretty. It’s not easy. It’s not without assistance. But I can walk.

Six weeks ago, I wasn’t able to walk. A few days before that, I’d begun a visit to the city of Antigua, in Guatemala, and was enjoying its colonial ambiance with friends.

Then, after a brief bout of sore throat, I contracted Guillain-Barre Syndrome, an autoimmune disorder that afflicts the peripheral nervous system. My body’s defense system, its antibodies triggered by the offending virus, had decided to attack the nerves in my arms, legs and trunk.

Upon awaking at 7:30 am on November 2, 2011, I could barely get out of bed. On rubbery legs, I made my way to the bedroom door to call for help. Six hours later, I was 99.9 percent paralyzed from the neck down.

In twenty-five years of practice as a family physician, I had never seen a case of Guillain-Barre. And in all honesty, I couldn’t remember any statistics associated with the illness, such as the fact that it affects about two in 100,000 people. I only remembered that it came on quickly and could have devastating effects, which I was experiencing already.

The consulting physician at Antigua’s small private hospital [...] continue the story

My Cancer Journey

My experience with cancer pushed me to make “consumer-driven” actually mean something in the healthcare industry. By Aimee Jungman

I’m a 42 year-old woman who has always been in good health. In April of ‘08, I started getting cramps in my stomach. They persisted for several weeks and occasionally were accompanied by sharp pains. This was unusual for my body. While on vacation, I admitted myself into a hospital emergency room (ER). The ER did blood work, a CT-scan, and an MRI, and said there was nothing seriously wrong. I just had a urinary tract infection (UTI) and a small cyst on my ovary that the doctor explained would go away on its own. The doctor prescribed medicine for the UTI and advised me to check in with my OB/GYN in a few months for a checkup.

What surprised me about the whole experience was that the clinical system seemed to dismiss my concern. As a woman who knows her own body, I was telling them something was wrong, but they told me I was overreacting. They were incredibly nonchalant and explained that female bodies were always changing due to hormones or menopause, that it can be hard for women to accept aging, [...] continue the story

The Executive View – Winnie Doyle

What does “Executive” really mean in the context of the delivery of care?

At St. Joseph’s Healthcare Hamilton, Winnie Doyle holds three executive positions. She is the Vice-President Patient Services, Chief Nursing Executive, and Senior Vice-President for Acute Care and Chronic Disease Management.

And she’s also an award-winning teacher recently being awarded the 2012 John C. Sibley Award from the McMaster University Faculty of Health Sciences. The award is presented annually to part-time faculty members who have made outstanding contributions to the education of health professionals.

As packed as her executive agenda is, Winnie Doyle has a clear vision of the central driver of her philosophy of care. At the one minute mark of this clip she reveals what “executive” means in the context of providing care.

Rosa: A Story of Love and Memory

By Judith Leitner

July 27, 2012

I’d like to share a story with you, a splendid story.

I began crafting this journal years ago, when I was searching for a way to understand my mother Rosa. She had been diagnosed with Alzheimer’s disease and I was coming home from ‘Away’ after a long absence. I remember that moment of insight when I understood, with sparkling clarity, that my camera would be my paper and my eyes would be my pen and Rosa would be my story’s artful hero.

 

 

I made pictures of Rosa for 10 years. Her story became, through my camera’s lens, a richly textured narrative about family, everyday life, relationships and home and hospital landscapes. Love, memory, change, mind, beauty, the photograph, light and shadow, hands, windows and space and time- above all time- became themes and questions that wove themselves in and out, over and under in my visual journal; indeed, these themes were natural metaphors for Rosa’s illness. Throughout my story, the camera held my hand, allowing me as daughter and artist to stand back and to step in – the duality of detachment and intimacy.

In my next entry I’ll tell you about the beginning of my journey as daughter [...] continue the story

The World Has Gone Mad

By Michelle Lemme

I’m definitely superstitious.  When I was a child (and even into adulthood) I was, without a doubt, convinced that if I did not say my prayers, and include virtually all of my loved ones AND “all the people in the world who are suffering”, something bad would happen (or at the very least, nothing good would happen) and I would be directly responsible.  Talk about guilt (I could never suffer enough to compare with those caught up in the atrocities taking place all over the world) and anxiety.   Even now, when my sister emails me these crazy “send this to __ people or ___________ will or won’t happen”, I go mental.  I mean WTF, why does she send me these things?  Rationally I know that something happening as a result of not forwarding an email is absurd.  And yet, I am compelled to send those darn things on, just to be on the safe side.  The only way that I can delete these emails, without any risk, is if I don’t actually open them! I should probably mention that avoidance, coping by not having to cope, is one of my fallback behaviors, I have always believed, “ignorance is bliss”.   It’s one of the ways that I manage [...] continue the story

Girls-With-Guts: Bella’s Story

How I lost and found myself after being diagnosed with UC

Hi everyone! Let me introduce myself, my name is Bella, and I am 24 years old. I was diagnosed with UC in 2007 right on my 19th birthday.  I went from being a healthy, happy, bubbly, energetic, athlete college student, to being suddenly very ill basically over night.

At first the medications helped, and I thought ok great, I just have to take some medication and I will be fine.  But 6 months later after a trip to Russia I was sick again and the medications weren’t helping.  I went through a lot of trials and tribulations.  I would try something, it would help briefly, and then it wouldn’t.  It felt crazy to me, and I could not, and would not believe this was my life!  It felt as if I was on a continuous physical and emotional rollercoaster.  I was very thin, weak, ill, and scared.  I was depressed, and just wasn’t myself.  I hid from the world, I didn’t want anyone to see me, I didn’t even want to see myself!   So I pushed everyone I could away. I felt like my life, dreams, goals, and aspirations were slipping [...] continue the story

Girls-With-Guts: Lauren’s Story

When Giving Up a Dream Really is the Best Thing

I became a runner almost immediately after being diagnosed with ulcerative colitis. For some reason, despite the blood loss, the anemia, emaciated body and new diagnosis, my disease didn’t strike me as serious at first. It was no different than chicken pox or strep throat. Okay, sure, I’ll take my medication and feel better. The thought that I couldn’t do something because of my disease simply didn’t occur to me, and I’m grateful for that naiveté. Not knowing just how bad ulcerative colitis could get, or how much it could impact my running journey gave me the courage to start. It started with a 5k. Then an 8k. A few half marathons. Several marathons. Before I knew it, I was deeply engrossed in the running community and surrounded by a group of incredibly athletic friends. They’re the kind of people who think training for an Ironman, a 2.4 mile swim followed by a 112 mile bike ride and a 26.2 mile run, is a lot of fun. The more I became one of them, the more just running marathons seemed insignificant. I decided I wanted the challenge of triathlon, but swore up and down I would [...] continue the story

Girls-With-Guts: Megan’s Story

When the Little Things Make a Big Difference

My college campus wasn’t very big. It only took 10 minutes to walk across the entire thing, and less to go from class to class. But even so, I remember running out of one class to use the nearest bathroom, and walking, defeated, to the next building for my next class, just to have that dreaded feeling of urgency hit again.

Junior year of college was one of the hardest times I have had in dealing with my IBD. I had been diagnosed just two years prior, and I had had it for long enough to accept that I was never going to be healthy again. But since I was diagnosed at essentially the beginning of my college experience, I didn’t know enough about sharing it with other people, and I didn’t have any good friends to be supportive. Basically, every day of junior year was just dealing, trying to get through one day at a time, and hoping the next one would be better. This included many days spent missing class, staying near a bathroom, and visits to the doctor or ER.

Although I was unsure of how both my disease and my college career would turn [...] continue the story

Michael Seres @11.38pm

Friday, 7 October 2011

Well we just got the call that a bowel has become available and we are now on route to oxford. It really is the most nerve racking thing you could ever wish to happen. My wife and I just didn’t know what to say to each other when the call came.

They have told me so far that my estimated surgery time is 7am as they have to retrieve the bowel. Also they cannot give the final go ahead until they see the bowel.

I will keep you posted as to what happens. Am currently on the m25 and I don’t really know what more to say. You wait for this to happen but when it does its so so scary.

Speak later its going to be a long night.

XX Michael Seres

Follow Michael @mjseres

More from Michael Seres

Michael Seres – Wed 21st Dec @ 3.49pm

(Editor’s Note: This is Michael’s first blog since the transplant).

So let me recap about life from my perspective since 8th October.

Somehow I seem to have blogged a day after my op from intensive care. In truth I have absolutely no memory of doing that at all. In fact I have no real recollection of the first few days post transplant at all. Obviously I have been told all about the care given to me and the team that looked after me but I feel terrible because I don’t even remember who did what. My last memory before the op was of that walk to theatre. The most nervous, scary 100 yards of my life. I’m not really sure how I kept it together or even if I did but I do remember giving my wife a kiss goodbye walking through the doors and just wanting to cry as I physically shook with nerves. I remember then climbing on to the table in the anaesthetists room and feeling freezing cold. I kept saying can you just put me to sleep but it was about 30 mins before that could happen. Sticky pads that linked up to various monitors were stuck to [...] continue the story