Wednesday, March 7, 2018

My HS story.


I've been wanting to write this post for the better part of a year but haven't found the courage.

You know that quote that says :
"Everyone you meet is fighting a battle you know nothing about.
Be Kind. Always."

That quote has resonated with me since the first time I heard it ...
because I believe it to be completely true.

Everyone has a battle. (and so many of them secret.)

I'm about to share mine with you.

Let me give you a short introduction to the video below,
an introduction in how it pertains to me.

I have Hidradenitis Suppurativa. (HS)

 I didn't know it was called that until a few years ago ...
I always just called it "my bumps" ... and only to my husband
because he was the only other person who knew the
extent of it (again, until a few years ago).  He was ... and is still ... the only
other person apart from doctors who have ever seen it in it's entirety.

Unlike Jackson, who shares so bravely in the Ted Talk below,
my HS has always been able to be covered up by my clothes.

I remember getting my first 'bump" when I was about thirteen.
They haven't stopped since.  I will be forty-five this year.

"Bumps" isn't the best word to describe what
 this disease does to your body, but I like it better than boils.
However, boils are what they are.

Jackson gives a good description in the video.

Watch the video and then ...
if you're still with me ... I'll share a bit about
the last year ... and the journey I have been on. 
The journey to healing from HS. 




My story is different to Jacksons. 
I was a healthy kid.  A healthy teen.  I'm a healthy adult.

BUT ...
when I was thirteen, I started getting "bumps" in my groin. 
They were painful and embarrassing and I didn't tell ANYONE! 
This was before the internet so I didn't have google to help me out with answers.

As the years progressed, so did the "bumps", they moved into my armpits
and other places where there is skin to skin contact.   There didn't
seem to be any discernible pattern.  They just came and went. 
Sometimes I'd have one.  Sometimes I'd have many.

Sometimes when you have more than one, they tunnel together under
your skin ... this is stage three and I have only ever had that happen once or twice.
I think I have mostly lived with the disease in stages one and two.

They varied in size. 
Jackson talks in the video about
getting ones that are baseball sized. 
I can imagine, but have not experienced,
 the pain he has suffered with ones that size,
mine have only ever progressed to the size of a golf ball
but I've literally passed out from the pain of having someone
or something bump into (or from sitting on) one of those!

They don't heal with any sort of regularity.
Some stay for a long time - months.
 Some for a short time - weeks.
Some just disappear. 
Some burst.

All of them have left scars that do not heal.

I never went to the doctor specifically for my HS. 
I had an emergency room "trauma" as a three year old that left me
quite frightened of doctors and hospitals for many many years. 
But if I had to go to the doctor for something else, they
would usually catch sight of a scar or a boil and I'd
ask them if they knew what it was.

I was relieved when I asked and was told that it
was NOT some sort of STD which had always been my fear! 
I figured I had caught something from a toilet seat!!

I was told all sorts of incorrect things.
One doctor said it was acne and it would clear up when my zits went away.
It didn't.   The most common mis-diagnosis was swollen lymph nodes
and/or ingrown hairs.  They told me I could have them surgically
removed if they bothered me too much. 
With my love of all things medical I always said "no thanks!"

I learned how to care for the boils myself.
 Hot compresses, epsom salt baths, bandages,
various ointments, these were my best friends.

I learned how to care for open wounds too
because when something the size of a golf ball bursts,
it creates a similar size hole in your skin.

I was always on the lookout to see
if I could see evidence of it on anyone else!
I never did. 

I always kept my ears open to see
if anyone ever talked about similar symptoms. 
They never did. 

Years and years and years (like 25 years!)
went by and then one night, I was up late by myself. 
There wasn't much on TV and I was half watching a show
called "World's Most Embarrassing Bodies" and I saw it!!  I knew that the
person they were showing had what I had!  I grabbed a pen and wrote
down Hidradenitis Suppurativa.  And then, I started googling!
What I discovered what that there was no cure.

I stopped googling.

I had managed all of these years. 

I'd be fine.

A couple of years later, just after I turned 40,
I went to have a routine check up with a new doctor.
She was the first doctor to ever say to me
"I think you have Hidradenitis Suppurativa."

I couldn't believe it!

After all these years, finally, I had a proper diagnosis. 
She recommended that I see a specialist.
I think it was a dermatology specialist and so I went on the waiting list.
 It took two years to get that appointment!

In the mean time, I decided to start researching for myself. 
I knew there was no cure, but I wondered if there was anything 'radical'
out there ... anything that I would feel comfortable trying.

I don't remember the time line or all the details
and they would be boring anyway but
I discovered that HS was an
autoimmune disease.

(although there is still some debate about that ... some refer to it as an autoinflammatory disease)

In any case, some people had found remission from HS
by following the Autoimmune Protocol (AIP).
I wanted to be one of them!!

Mid April 2017, I stopped eating all grains (including corn), seeds,
spices that come from seeds, nuts, gluten, sugar, soy, dairy, 
and nightshade vegetables. (nightshades are tomatoes,
peppers, potatoes, goji berries, eggplants)

I eat meat, fish, vegetables (apart from nightshades), & fruit.
I eat as much nutrient dense and gut healing food as I possibly can! 

But AIP isn't just about food.

I started to pay attention to how much sleep I was getting.
I aim for eight hours a night.  I don't always get it but I
find that I get much closer if I'm aiming for it.

I pay attention to my stress levels.
I intentionally do things to lower them before they get high.
I started walking on the beach as many mornings
 as I can.  I don't make it every morning but the
few mornings a week that I get my toes in the sand,
my face in the sun, my ears filling with the sound of the sea,
my eyes filling with the beauty of the sky do me
so much good.

It relaxes me even to write about it!

I make sure I exercise.
I walk.  I do pilates.
I swim a couple times a week.

And do you know what happened?

Nothing for the first few months.

But I joined some AIP and HS support groups on facebook.
I asked questions.  I listened.  I tweaked what I was doing.

And after about three or four months, I started to see changes.

Small changes but oh my goodness ... changes!!

My "bumps" started to react differently.

They didn't get as big.

They didn't stick around as long.

And as the months continue on, I continue to see more changes.

Eventually the "bumps" stopped bursting!
They all just started to disappear on their own.

And then, this month,
I realised that I haven't had a new one! 
This is incredible!
It's beyond what I ever thought possible.

I have started to add foods back in and see how my body reacts.
This is probably the trickiest part of the whole thing.
But ... I'm encouraged!

I'm encouraged that this disease can be managed.
People ask me if it's hard to have such a restricted diet.

My answer:

Sure, it can be a little bit difficult sometimes.
Difficult to not eat my favourite foods.  Or to feel like "that person"
with all the weird dietary restrictions.

But not as difficult as living with boils the size of golf balls
or open wounds that take months to close.
Not as difficult as being in chronic pain for more than
thirty years and a diagnosis of "no cure".

Not as difficult as not having an end in sight.

And all because of a choice.
A choice that is all mine.

And making that choice each time I decide if I will or won't eat something

 ... that is easy.








Thursday, January 14, 2016

My 2016 Reading List



Here is my "list" ...

I am sure it will change throughout the year. 

I won't make it through all of these.

I'll add to them.

But these are what I'm starting with.




What's on your reading list this year?

Wednesday, January 13, 2016

On Writing: A Memoir of the Craft

I'll start by telling you that I loved this book.

LOVED it.

And I haven't even finished it.


I am not an aspiring writer.  I do want to write a book or two in my lifetime, but I don't want to be 'a writer'.  In my current job, I have opportunity to write for a community magazine four times a year.  I enjoy that but I wouldn't want to do it full time ... as a job.

I'm not interested, really, in writing fiction.  Although, after reading this book, I reckon I could give it a good crack.  I feel armed to take on the writing world ... even though it is not really what I want to do.  That is how good this book is!

Like I said, I haven't actually finished the book.  I started it a while ago and then life got busy and I gave my time to other things like my kids' and husband's birthdays, end of year events at school, Christmas, school holidays (summer vacation), and who knows what else!?  I have a little sunburn that tells me some of my time was given to the beach!  I hate sunburns and I fully lathered up with 50+ sunscreen but I missed a couple of bits and they aren't happy with me!

But back to the book not being finished!  I picked it up again the other day and have been reading away, totally loving it.  But today I got a notice from my library saying they assume I've lost the book and would I please return it or pay $51.62.  Oops!  I prefer to not pay for library books so I returned it!  I've re-reserved it though so I will finish it when it's my turn to take the book home again!

SK talks a lot about his life and his journey to becoming an author in the first half of this book. He shares some great wisdom that he has gained along the way.  I love this ... 'put your desk in the corner, and every time you sit down there to write, remind yourself why it isn't in the middle of the room.  Life isn't a support-system for art.  It's the other way around."

And ... "If you want to be a writer, you must do two thing above all others; read a lot and write a lot.  There's no way around these two things that I'm aware of, no shortcut."  It's really true, isn't it?  My art teacher tells us all the time that the best artists are the ones who do art ALL THE TIME.  It's probably true across the board ... the more you DO __________ fill in the blank, the better you become at it. 

SK encourages aspiring writers to set a goal of writing 1000 words a day.  Just sit and write.  Now, like I said, I'm not an aspiring writer, but I do want to write a book this year.  And so, in Feb, once the kids have gone back to school and I'm back into a routine, I'm going to start by setting myself the goal of writing 500 words a day.  I have no idea how long that will take me!  I guess I'll find out! 

SK says that what each of us knows makes us unique!  I agree.  I have a story to tell ... it's not fiction.  It's the story of 2015  ... my year of 'the uncomfortable'.  I'm not sure if anyone else (besides my husband, my best friend, and a handful of other people) will ever read it, but I'm going to write it!

I've also got a line up of books that I'm going to read in 2016.  I'll share that with you in another blog post soon!  Do you have a reading list?   Shoot me a link in the comments, I'd love to come check it out!  Or you can find me on goodreads ... I love finding new book recommendations on there!


Monday, January 4, 2016

Rain or Shine. Or Both.

Don't you love just love the different types of weather?

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Yesterday morning I pottered around in the garden, pruning our random tomato plant
and uprooting the zucchini two plants that refused to grow before sitting on 
the porch swing chatting with my best friend who lives overseas.

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This morning, after a night of pouring rain,
it had slowed to a steady drizzle so I stood on the back patio
admiring the rain drops that lined the foliage of the jasmine vines. 

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I kept watching them drop and decided I needed to grab my camera and take some photos!

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The light was amazing! 

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Who would have thought?  A rainy day?  Good lighting for photos?! 

I guess that's how we learn, eh?  By doing.

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As I was peering through the lens, my eye found a little hidden wonder ...

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A gorgeous dragon fly seeking shelter from the wet drops.

And the beautiful white flowers that had opened opened earlier in the week
were tightly shut, protecting their delicate centers from the rain.

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Such little beauties.

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This little one didn't shut quick enough and was pulled over by the weight of the rain.
I still thought it was beautiful though ...

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I do love the rain. 
And the shine.

Do you?

Monday, December 28, 2015

Organize Me Monday: Studio Tour

Organizing.  It's my thing!  Well, it's one of my things.  One of my favorite things!  It may sound weird, but taking an unorganized space and making it organized energizes me like few other things do!  Taking an organized space and making it more organized is pretty great too!

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Recently we had our kitchen remodeled.  Prior to that happening, I had kitchen appliances stored all over the place.  One cupboard in particular, near the front door, was full of appliances.  Well, now that all of the appliances fit in the kitchen (!!),  I had an empty cupboard which I have been working to make into storage for my art and craft goodies! Today I finished that little endeavor and I thought I'd show you!

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I have made two videos to share with you today.  You'll have to excuse the segments where everything goes blurry ... that's my lack-of-videography-know-how making itself known! Clearly, I need some practice! 

The first video is a tour of my "studio".  We don't have room in this house for me to set up a whole room as a studio unless I want that room to be the garage ... and I don't.  Initially, I  set up a section of the family room where I could work and that has sort of oozed around the corner ... which works perfectly now that the bread-maker and mix master are in the kitchen where they belong! 



The second video is showing you the inside of my art and craft cupboard ... how it is organized and looking inside a couple of the boxes. 



I mentioned in the first video that I was doing The Documented Life Project in 2016.  I did the second half of 2014, and a self-modified version in 2015 ... I'm hoping to complete an entire year of actual DLP this year!  Do any of you participate in this fun project?  I'd love to follow along with you!  Let me know where I can! I'll probably post some photos on my TrèsBonn Instagram and Facebook pages but mostly I think I'll share my weekly pages here on the blog ...

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Wednesday, December 3, 2014

Corner View {Open Doors}

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We decorated the house for Christmas yesterday!  It was great fun. 
This little house is a new decoration this year ... A candle burns inside it.
The door is open ... all are welcome.
:)

Time to go visit the other Corner Viewers ... starting with the host FuoriBorgo.

Thursday, November 27, 2014

Corner View {One Color}

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The theme for this week's Corner View - hosted at FuoriBorgo - is one color. My favorite color is green. A deep emerald green. Mmmmmm, I love that. But my one color today is YELLOW. When we are talking flowers ... yellow are my favorite! And this yellow beauty is currently stretching towards the sky in my backyard.

Thursday, November 20, 2014

Corner View {One Song}

I wasn't going to make a post today as I haven't had time to think let alone make a post about a song. 
But I decided I still wanted to go visit the other Corner Viewers and halfway through, 
I got inspired 
and remembered a song I LOVE. 
It's actually a television ad but I adore it ...

Sunday, November 16, 2014

The Fault In Our Stars

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This book is sad.  
Real sad.  
But it's worth reading.

Any book about a teenager with terminal cancer is going to be hard to read,
but John Green has a way with story telling that makes this book 
pretty darn easy to read.  The characters are loveable and 
fun.  I felt like the I knew every one of them, quickly.
I felt like I was right there with them, going 
through life as one of them.  I was 
sad when the book ended, sad
because I was going 
to miss my new
friends.

Wednesday, November 12, 2014

Corner View {TrèsBonn} - Home Alone



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Oh hello my poor little neglected blog!  How great to see you again.
I thought that a Corner View might be the perfect way to get you going again!
The theme of "What You Do When You Are Home Alone" is perfect for what I have to share!

I've been busy ...

A month ago, I opened an Etsy shop!
I called it TrèsBonn ... a play on my name, Bonnie, and the French words for 'very good'.
It has been a bit of a whirlwind and I'm loving every minute of it.

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At the beginning of 2014, I took an online course that dealt with being ok with imperfection. 
The course involved keeping an art journal ... 
something I had never really done but found I really enjoyed. 
Each week, I had an 'assignment' or two that I very quickly finished. I wanted more.

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In my art journal, I had begun to experiment with water color paints. 
Having always loved quotes, I decided that I would try 'painting' some of my favorite ones. 
I posted them to my various social media sites and got a very encouraging response.

As family and friends started telling me how one of my little paintings meant 
something to them, I started mailing them to those individuals. 
I loved being able to send a little encouragement in the mail .... 
especially when I was able to do it as a surprise!

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Another love of mine is birds.
I could watch birds all day long ... if only they would stay still for me!
One night I discovered that I could paint them. 
Again, I started posting them on social media and got a favorable response.

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After a while, people started encouraging me to open an Etsy shop. 
I thought, why not? Might as well give it a go!

So, here we go!

I'm excited to see where this next step in my journey leads ...

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Never been to Etsy? 
Well ... if you follow this link and sign up, Etsy will give you $5 towards your first purchase! 

PS ... I can't wait to come visit all of you Corner View friends, old and new!
I've missed you.

Friday, October 17, 2014

Whistling Past The Graveyard

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Whistling Past The Graveyard by Susan Crandall

I have been meaning to sit and write a review for ages but got too busy painting and opening my etsy shop!!!  (more on that in a later post) I kept looking at the book sitting on my desk, needing to go back to the library.  I thought a few times ... I won't write a review ... I'll just take it back.
But I just couldn't.  I just had to write a review! I just had to let you know that 
you need to read this book!!  Seriously. 

It was a fun, easy read. 
I enjoyed every minute of it.

It's written in the voice of a nine-year-old white girl in the early 60's who runs away from the home where she lives with her overly strict grandmother and a father who adores her but works out 
of town most of the time.  She sets off to find her mother.  Along the way she has
adventure after adventure.  Some very dangerous and terrifying.

Trying to make her was from Mississippi to Nashville ... on foot ... she accepts a  ride
from a black woman travelling with a white baby.  This decision will 
change her life forever.

I loved how the author captured the innocence of a child.
The unquestioning devotion of a child to a parent.
The inner workings of the mind of a child.
I just loved it.  All of it.  I wish I 
read books twice.  This
one, I probably
would.


Wednesday, August 27, 2014

Orphan Train


Orphan Train 
by Christina Baker Kline

I'd not previously read a book by Christina Baker Kline but I've
already picked up a second one from the library!

That's how much I liked this book.

Set in two different eras, Orphan Train tells the stories of two women,
one nearing the end of her life and the other just entering adulthood.

The two are put together by coincidence, developing
a friendship due to a common bond they didn't know they had.

The book and it's characters are fictitious but they
could easily be the story of any number of the thousands 
of orphaned and abandoned children who were sent by train 
from East Coast to Midwest America between 1854 and 1929.

Knowing a story based in reality always draws 
me in.  Putting myself in another persons shoes always
makes me take a fresh look at areas in my life where I might be 
less than grateful.  It causes me to re-evaluate and I think that is healthy.

I'm interested to read the next Christina Baker Kline book to see
if it was her writing/story telling ability that I loved so much or if that book
was just a once off success.  I'll keep you posted ... 


Wednesday, April 9, 2014

Rejuvenation {Corner View} and the Little Things


I got to chose the them for Corner View this week! So fun! I chose rejuvenation because I love to see what people love to do to re-energize, rejuvenate, relax ... you know, those sorts of things.

One of my favorite, most relaxing things that helps me rejuvenate is taking a bath! With bubbles! Lots of sweet smelling bubbles! I take long baths ... I can spend multiple hours in the tub if I have a good book!
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And continuing my quote painting series ... I thought today's went along nicely with the theme.  Enjoying the little things ... for me, is rejuvenating!


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You may notice that this one is different to the other ones ...
I had some bookmark sized watercolor paper laying around so decided
some of these could be bookmarks! 

***

Corner View was created by Jane at Spain Daily and is now hosted by Francesca.     It is bloggers from all over the world, posting photos of a specific    weekly theme.  To join, just post to your own blog and then link up  over   at Francesca's Corner View for the week.  Then, visit the other  Corner   Views ... that's my favorite part !  Seeing the interpretations  of the   themes, visiting different cultures, learning something new ! 

Wednesday, April 2, 2014

Corner View {Inspiration}

The theme this week comes with perfect timing. I really wanted to share this with you all! My Dad posted this to facebook the other day and I just love it!! I love that he stepped out of his 'normal' and did this very creative piece!

He wrote this ... Inspired by Bonnie, I decided to try creating something different from my norm. Here is 'thank you" in many languages. Thank you, Bon, for being an inspiration, among so many other things.

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Isn't it just amazing!?  I love it!  Handwritten and everything!!

I've printed it out and put it on the wall beside my desk
where I see it and can't help but smile about it a gazillion times a day!

***

Corner View was created by Jane at Spain Daily and is now hosted by Francesca.     It is bloggers from all over the world, posting photos of a specific    weekly theme.  To join, just post to your own blog and then link up  over   at Francesca's Corner View for the week.  Then, visit the other  Corner   Views ... that's my favorite part !  Seeing the interpretations  of the   themes, visiting different cultures, learning something new !

Sunday, March 30, 2014

The Broken Man

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I picked this book up off the shelf at the library last week.  I was thinking that I'd never read anything by Josephine Cox before but when I scanned through the long list of her books, I realized that I actually have!  Blood Brothers, I read it just over a year ago.  It was interesting to go back and read that review and see that I thought that book ended abruptly.  I felt this one did too, though not quite to the same degree.  I also felt like there was one character called Anne who was a major player in the story, but at some point, she just dropped off the planet.  I would have liked to know what happened to her and how her connection to the other characters worked out .... (I can't really say more than that without a spoiler alert!)

Having said all that,  I did still really like this book.  It's the story of a little boy who, having lived his first seven years with an abusive father, is one day taken from that horrible existence and thrown into a life no one would ever wish on any child.  Tragedy strikes early on, but not so early that Adam hadn't already found his way into my heart. I was left cheering him on, hoping for the best.

Phil, the bus driver who was with him the day tragedy strikes, is a loveable fellow.  Kind, sensitive, and loyal, he is the perfect grandfatherly friend for Adam.
 
Sally and Mick ... and Anne.  Three friends whose stories seem unrelated at first but as the story twists and turns, we find out what a small world it really is!  


Wednesday, March 26, 2014

No Act of Kindness {CV} Close By

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This little guy is always close by ...

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***

Corner View was created by Jane at Spain Daily and is now hosted by Francesca.     It is bloggers from all over the world, posting photos of a specific    weekly theme.  To join, just post to your own blog and then link up  over   at Francesca's Corner View for the week.  Then, visit the other  Corner   Views ... that's my favorite part !  Seeing the interpretations  of the   themes, visiting different cultures, learning something new !

Thursday, March 20, 2014

Possibilities {Corner View} In The Distance

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Corner View:

I love this rainbow ... over our house ... in the distance ...
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***

Corner View was created by Jane at Spain Daily and is now hosted by Francesca.     It is bloggers from all over the world, posting photos of a specific    weekly theme.  To join, just post to your own blog and then link up  over   at Francesca's Corner View for the week.  Then, visit the other  Corner   Views ... that's my favorite part !  Seeing the interpretations  of the   themes, visiting different cultures, learning something new !

Monday, March 17, 2014

The Burning Air

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The Burning Air
by Erin Kelly

I picked this book up because the front cover caught my eye.  I'd never read anything by Erin Kelly before, but after reading this one, I think I'll give another of her books a go.

Some of the language made me think that this author was Australian but I discovered afterwards that she is English ... one of Britain's foremost psychological thriller writers according to the back of the book.

In one word, this story is about REVENGE.  There are no two ways about it.  The main character is set on taking revenge on a family whom he was convinced had wronged him.  His plan was elaborate and took a long time to see through.   It took over his whole life and I found it so sad.

In a humorous twist, I didn't realize that the main character was a man until I was in the 24th chapter!  That was a shock.  I don't quite know how I got so confused but I had a good laugh about it after I got over the initial confusion!  

The story was enough to keep me wondering until the last chapter how it would end ... I'm just not sure I'm satisfied with how it did.  


 

Wednesday, March 12, 2014

Little by Little {Corner View}

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The theme of Corner View this week is travel.  Oh how I love to travel!  If only I had traveled recently and could post a fun photo for you!  Instead, I decided to share another of my little quote paintings.  I love this quote ... I think it is so true.   At 40, I can look back and see the 'little by little' that has gotten me to where I am today.  I look forward to another 40 years of 'little by little' and can't wait to see where that takes me!
 
 
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Corner View was created by Jane at Spain Daily and is now hosted by Francesca.     It is bloggers from all over the world, posting photos of a specific    weekly theme.  To join, just post to your own blog and then link up  over   at Francesca's Corner View for the week.  Then, visit the other  Corner   Views ... that's my favorite part !  Seeing the interpretations  of the   themes, visiting different cultures, learning something new !


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