I'm sorry I haven't been around in awhile, I thought I would have tons to tell while my mom has been here and its not that I don't but I just haven't had time truth be told! I am flying to Maine on Friday so somewhere I will find time to fill you all in!! In the meantime I have an exciting guest post by a great friend of mine who has recently contributed to an amazing book and she would love to tell you all about it!! I have already pre-ordered mine and I HIGHLY recommend you do the same! Take it away Mel!
We all have a story.....I have never "publicly" shared mine until now. As I get older I have find that I have gravitated towards doing the things I LOVE....So I have to ask.....Do you love your life, your career, and most of all yourself on a daily basis? Are you INSPIRED? I am proud to say I have crossed something off of my bucket list and am finally a published author. We have an AMAZING one day only virtual book launch coming up and I am trying to reach out/spread our message as far as possible. My lovely friend Nicole has let me hijack her blog for the day to tell you about this!!!
This is going to be one of the most amazing collaborative books of the season: Defyeneurs Season 3: Live your WHY directed by Gerry Visca. This is a huge milestone for me to become a published author and I am so excited to share with you my exciting chapter titled: POWER OF CHOICE and also the other 24 exciting authors in this incredible book.
Together, we are helping others live their "WHY" which the founder of the Defyeneurs movement, Gerry Visca, defines as: The World Helped by You. This book series celebrates EVERYDAY people doing EXTRAORDINARY things. No one should ever feel alone and greatness is reserved for everyone.
This is no ordinary book written by just one author - it contains the energy of over 24 authors with an inspiring introduction by the founder of Defyeneurs and one of Canada’s top inspirational speakers sharing his vision of a world inspired!
Please mark your calendar for November 1, 2013 and on that day log onto http://www.defyeneurs.com/ to order a copy of Season 3: Defyeneurs! You will be prompted to enter my name Melissa Goodwin as the author. This is a book of inspiration, support, and 24 individual messages of how to LIVE YOUR WHY!!! I imagine a world inspired......
Thank you for your support
Melissa Goodwin Contributing Author - Defyeneurs Season 3: Live your WHY
There you have it folks!! LIVE YOUR WHY! Everyone has goals and aspirations, take the time and read this book and see how other people accomplished theirs, what and who drove them and what they got out of it. Enjoy these wonderful stories and give them the chance to inspire yours!
I may not know all of the authors but I know one and I know her story, I promise if this book is filled with authors as hardworking, dedicated and overall as enriching as her this book is destined for great things, just as all of you are! Thank you Mel for stopping by and giving us all the opportunity to be apart of something amazing!!
Please check out more about this inspirational book and its authors HERE
Happy Football Sunday!!! I am super excited for today's post, because it is my very first guest post and the cause is extremely important! I really hope you all take a minute to sit, read and really absorb the magnitude of this cause! I greatly appreciate your time here as always and I will be back tomorrow! I am off to watch football and not drink beer... ya I said it. Anyways I am pleased to introduce Stephen who has the immense courage and strength to share his very personal story in hopes of finding a cure of this terrible disease with which he suffers.
What
you didn't want to know about PSC,( Primary Sclerosing Cholangitis.), but
learned anyway.
As if
you didn't have enough already in your life to worry about, here I come along
wanting to tell you about a rare, incurable disease that affects me and a very
tiny percentage of the population. Why bother ? Two reasons. First, you may
know someone who has Ulcerative Colitis or Crohn's disease . These two diseases
are more common . You might ask, well so what ? Well, hold on for a moment and
I will tell you why this is important. This blog is about an area of the body
that has some uncomfortable side affects, so if you are currently eating a nice
bowl of chili or something tasty, you might want to put it aside to eat
later.
Second
reason, if you find yourself interested in this devastating disease , you can CONTRIBUTE to some fundraising. Hah, I can hear you now, "I knew it, this
bastard is looking for money". Ugh, ya I am but I want more people to know
about this disease and the fact is, drug companies develop drugs based on
perceived demand. So today we have an
ample supply of drugs for erectile dysfunction and next to nothing for PSC.
According to drug companies, man's need for a good, hard and lengthy erection
is more important than saving a few lives every year. Welcome to 2013.
PSC
affects a very small percentage of the population, so small in fact that I bet
you have never heard of this disease. PSC is an auto immune disease, which
means the body attacks itself. Nobody knows why. What they do know is, if you
have or had Ulcerative Colitis, you have a greater chance of developing PSC in
your life. The odds are still low but greater than the average person with no
history of bowel issues. PSC attacks the liver and the bile ducts, corroding
both and wreaking havoc. Currently there is no cure. The most common form of
treatment for serious cases is a liver transplant. Regretfully , this is not a
cure but it can provide the patient with renewed energy. After the transplant,
PSC is not gone. It still lives in the body and can and will attack the new
liver.
Here are a few pictures to give you a visual of the area of the body that I am discussing and how it is affected.
I
personally know a few PSC patients that have had 3 liver transplants. They
don't usually do a fourth. It sounds simple, a liver transplant, just lift the
lid and pop one in. Well, going through this is horrific, dangerous and very
painful. If you haven't signed up for your organs to go to someone if something
should happen to you, I encourage you to do so.
If
you currently have Ulcerative Colitis or Crohn's disease, I would encourage you
to talk to your G.I. specialist about your risks of PSC. It sometimes happens
that you have the disease and don't even know it as it lays dormant for years,
causing problems that you might chalk up to something like the flu, food
poisoning or just some weird bug. You never know.
So
here is a basic review of my medical story. I will try to keep it short.
When
I was 15, I started to get sick. I had pain in my gut, bad diarrhea, bloody
diarrhea some days rapid weight loss and fatigue. My GP at the time thought I
had the flu, so this was the diagnosis we went with. Off I went to summer
church camp where I spent the summer working various jobs. I kept getting
sicker. I got so bad that if I drank a glass of water, I would head straight to
the washroom , sit down and it would come out the other end. All in 60 seconds.
I kept on working, not telling anyone but I got so weak I couldn't perform my
job. I recall the camp manager getting pissed off at me as he thought I was
just lazy. By mid summer I had to go home. My parents were not alive so I lived
with my brother and I went back to my GP. He then suspected I had Ulcerative Colitis and booked an appointment with a UC Guru connected with Dalhousie
University. He examined me and yes I had the same disease my Father had. By
this time I knew it anyway from watching my Father deal with it for decades. So
I went on steroids to bring the inflammation in check, (a horrible but
necessary treatment sometimes) plus 2 other pills that I took daily. I was
sometimes OK other times, I would have flare ups. I had some lovely
tests, hoses and cameras up my rear end
along with other assorted delights. I was 16, in my prime and going to get
these tests was humiliating . I had this one test every 6 months where they
laid you on a table, on your side, inserted a hose in your anus, shot dye up
your colon then they filmed it, all the while trying to hold the liquid in.
When I was done, they told me to get off the table and run to the bathroom and
let it out. I made it to the little bathroom. As I was vacating the liquid dye,
a nurse walks in, looks at me and says, " oh Stephen you forgot your gown"
. Could she not have hung on it on the door and knocked without walking right
in on me ? This kind of humiliation only got worse over the years. So I lived
like this for the next 15 years, 20-30 pills a day, constant monitoring,
colonoscopies every 6 months, then every 3 months, then every month or so.
During this period, going through high school, I had more than a few bowel
incidents, essentially being caught too far away from a washroom and loading my
pants. I cringe whenever I look back on those days.
After
15 years or so your odds of getting colon cancer increase, specially since my
Father died of it when I was 15. I started to show signs of pre-cancer, then
early cancer, so I ended up having a full Colectomy, where they remove the
colon, a piece of the small bowel, the rectum, the entire plumbing system
ripped out and started wearing an ileostomy bag at age 30. I had 3 major
surgeries in 11 months during my 30th year, so there was no celebration on my
birthday, that I recall .
Having
to wear an ileostmy bag is a huge shock. I recall watching the movie, Dances
with Wolves and my wife at the time looks at me and says,
" hey hon, your Indian name could be , "He who shits in a bag".
In those days we didn't use the current term Native Canadian or whatever we are
supposed to say now. During those times, nobody ever ,ever mentioned PSC. It
existed but I doubt the Doctors knew anything about it. Just as well, I would
have obsessed on it and drove myself crazy.
When
I was 50 or so, I started to get sick, specially when I traveled for business.
I would get belly pain, I would vomit, fatigue but it would only last a day
then I would be fine. I always chalked it up to the flu, bad food, whatever but
I never told my Doctor. This went on for years and the episodes got worse.
Finally in May of 2012 I was travelling on business in Western Canada and I had
the worst episode yet. This time I got severely jaundiced, I mean I was yellow,
my pea turned dark, my stools turned grey and I could barely move. This was a full
blown Cholangitis attack. As it turned out, my common Liver bile duct was
blocked and so bile started leaking out into my skin and the body tried to
compensate by excreting bile through the bladder and intestine. I was admitted
to the hospital, diagnosed with PSC and had an ERCP, where they put a camera
down your throat, into my abdomen and the Doctor can actually enter the bile
duct, place a stint and open the blocked duct. The procedure set off a bout of
Pancreatitis, a horrible thing to go through but ERCP's can sometimes can cause
this too happen . I spent 17 days in the hospital, went home after that and
rested up for a week and then I returned to work. In July I had to go for
another ERCP, which as it turned out was a bit of a nightmare experience. The
patient is always sedated, not totally knocked out but enough that you don't
know what's going on. This time for some unknown reason, the sedative didn't
work and I lay awake through the entire procedure. Yikes.
So
after this second ERCP, the results are sent to a lab to get tested for cancer.
The Doctor takes scrapings from the bile ducts. It's routine. A few weeks later
I received a call from my G.I. telling me on the phone they found a tumor in
my bile duct and it was positive for cancer. Talk about shock ! So after
multiple visits, tests, discussions I was scheduled for "Whipple surgery", which is the most complex surgery one can get in the abdomen
area. The surgeon opens you up, I mean he cuts you open from side to the other
and exposes the gut, then he removes the cancerous bile duct, piece of the
liver, stomach, intestine, pancreas, then reconnects you back up where your
body literally has to start over and relearn to function normally. I had the
surgery in the fall of 2012 and here it is the fall of 2013 and I am still
messed up inside. Thank you PSC!
Today
I am exhausted most days, am in constant pain, (partly due to adhesion's from
multiple surgeries in the same area but that's another story). I can't work. I
can't travel. I am afraid to leave the house for more than a few hours. My
sweet wife has endured a lot, as a matter of fact at the age of 49, this past
February she had a serious heart attack and then a small stroke a month later.
It's been one hell of a year!
If
you want to go on line and read more about PSC, then I would suggest looking at
the Mayo Clinic. Check out this link.
I
trust this site for the most accurate information on PSC. The scary part of
this disease is cancer, specifically bile duct cancer. It's very hard to detect
and if not found early, it's usually a death sentence. I was a very lucky
person, mine was found early but I live in fear that it will return.
If
you would like to contribute a few dollars, I am currently raising funds for a
PSC research group that I belong too. Anything will help. Research dollars are
desperately needed. Just click on this link.
Once
you open the site, look to the top left side and click on the link: find a
team/ participant. Then type in my name in the little window, Stephen Cox, then
search, then click on my name and then you can click on make a donation and go
from there. I will get a copy. You cab do it anonymously if you like. No need
to give your name. Any and all help will be deeply appreciated.
If I
can answer any questions, let Nicole know and we can get in touch.
Thanks
so much for taking a few minutes of your day to read about a somewhat depressing
subject.
