I wrote this article last year. This week marks the 15th Anniversary of when I had this life altering surgery. As you will see having an Ileostomy truly saved my life.
In the 15 years I’ve lived with an Ostomy, I have had positive experiences and negative experiences. Though through it all I have managed to accept this reality as another facet of my life. I have learned patience as well as acceptance. When I first had the Ostomy at the age of 21 I saw the image of what my life could and would be disappear. I was in a toxic relationship and thought to myself “at least she is still her and not disgusted by my poop bag” what I would quickly learn over the coming weeks of being an ostomate is that people change. My toxic relationship ended and I soon met my true love who accepted my Ostomy as part of the package. I am proud to say this person is now my wife of 10 years!
As I mark the 15th Anniversary/Birthday of my Ileostomy, I want people to know there are others out there that will accept any physical flaws you may have, and by accepting they inadvertently push us to better accept our circumstances and strive.

Life is how you live it…

There are times in your life where you just know. You know what the ultimate outcome will be during a life experience. For me, I just knew I would be having a life changing surgery. Before the doctors were going to proceed, they wanted to try a new drug at the time. This drug, Remicade, was literally brought down via Ambulance from Edmonton. I know what you’re thinking, lights, sirens with a police escort…. This was not the case, although in my mind at the time, it sure was.
Remicade is widely used today to treat Ulcerative Colitis, with great success. I have close family members who have been treated successfully and flourish on the treatment. However in 2003 it was so new to the market my doctors were not certain how effective the treatment would be.

The day it arrived to the hospital, I had to sign a lot…

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For many with a chronic illness when a spouse or partner become ill themselves or require a medical procedure a unique situation creates itself. The partner that typically needs a bit of extra help with daily activity is thrust into a role of caring for their loved one as well as managing their own conditions.... Continue Reading →

What an interesting week it has been... a certain MS symptom from years past has returned. Optic Neuritis or more simply, double vision. I first noticed it almost a full week ago when looking to by far left without moving my head. Horizontal Double Vision 2018 At first I thought it was just a trick... Continue Reading →

Living with a degenerative neurological disease obviously plays with ones emotions. Simply writing these words out gives me a lump in my stomach. As many of those reading this know, I have been adapting my life for a great many years. As a new situation enters my life bringing with it change, I adapt. Whether... Continue Reading →

The Facebook Group phenomenon.

A very similar perspective to my most recent article.

Diabetes Blog - Happy-Medium.net

I’ve been added to about seven different Facebook groups lately (no, wait– it’s actually eight). All are diabetes or health care advocacy related. Is it me, or is this becoming a thing?

Sometimes, it’s because I’m attending or have attended a conference, and the organizers created a FB group for it. Others have been due to something common that the group’s creator wants to share and have shared within their group.

When I’m added to a group, I get a little imposter syndrome, like I do with nearly everything else. Why do they want me in their group? But I get over it kinda quickly. Then I’m left with: do I participate, lurk, or ignore it altogether?

I’m a Facebook user and have been for years, but I think it’s safe to say that I consume a lot more content than I produce. So already, I’m mostly on the lurking…

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We all manage distractions in our own ways. For some, they are able to simply tune them out. For others such as myself, this is not always possible. When we are children there is almost nothing in the world that could distract us from what we are focused on. I see this in my own... Continue Reading →

#How To Piss Off Disabled People

A Chronic Spoonful


This week, one of the trending, or popular, hashtags on Twitter was #HowToPissOffDisabledPeople.

Disabled people (which includes people with chronic disease) were listing phrases that abled people said, or things that they did, that annoyed them.

These are things that I’m sure many abled people say, without thinking. Or even, sometimes, thinking that they are being kind, or sympathetic.

Positive Thanks? I mean… I’m a whole human, with complex emotions. Just because I have disabilities and chronic illness, doesn’t mean I have to be negative and depressed all the time.

The problem with this is, these comments aren’t kind. They betray a sense of privilege, and end showing us that you think we are different, and not in a good way.

All of this is bad Just… All of this… 😒

If you are disabled, you will be used to hearing advice that is meant to be “helpful.” “Helpful” comments and “advice” that is given…

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I was asked by a former work colleague, what it feels like to have and hide all of my medical conditions . They explained they had a good idea of Multiple Sclerosis although when it comes to an Ileostomy and Pyoderma Gangrenosum they weren't too sure what these were, until Google helped them discover more.... Continue Reading →

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