My new home

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http://wheelyfast.powweb.com/

The link for my blog is at the bottom of the homepage.

Cancer only sucks on days that end in “Y”

Cancer only sucks on days that end in “Y” is an amazing book. It tells the story of Zachary and his battle with Cancer. It is told from his Dad Scott’s point of view. Scott uses humor to take us though Zachary’s journey from diagnosis up until almost today. No matter what happened in the book I often laughed though tears. Scott had a way of writing about the very scary world of Cancer in a way that makes you forget just how scary it is. He takes the dark moments and makes them so much lighter through humour but he never lets you forget the fight Zachary is fighting.

Right from the beginning, the book is filled with hope. I think that is probably the most important thing. I (touch wood) have not been affected by cancer, other than having many special friends on caringbridge and carepages who have battled the monster. But I still see Cancer only sucks on days that end in “Y” as a book that is a worthwhile read for someone like me. Why? Because it challenged the way I saw the world. The way I see my place in the world and made me realise that no one knows what the future holds.

You can buy the book by emailing Scott @ srfinestone@hotmail.com or by visiting his publishers website @ http://www2.xlibris.com/bookstore/bookdisplay.asp?bookid=50620 Barnes & noble, Amazon, and Boarders all apparently have it for sale too.

Zachary’s journey can be followed @ http://www.caringbridge.org/fl/zacharyfinestone/

I challenge you, go by the book, read it and then tell me it hasn’t changed you in some way.

And I am back

I managed to bring this blog back from the dead and as such will be posting here from now on. There has been a lot going on in my world and I have tons of posts that I need to write but have oh so little time right now as I have about 5 assignments due this week. But please do come back! Tomorrow I’ll be posting my first proper book review on here.

I’ll also fill you all in on the lastest saga with my health and the battle over my new set of wheels. Oh, I got a letter of apology from the care agency, too. Now I am just hoping they don’t do nasty things like withhold care because I complained. Anyway, stay tuned…

Advocacy

As an adult with disabilities, I have been advocating for myself for a long time now. I arrange all my own carers and deal with my case manager (person who controls the funds that help pay for the carers and for some of my other needs in relation to my disabilities). That’s why I am amazed that my parents received a letter in the mail stating that the coordinator of the carers has changed and including all the new person’s details. Now it may not seem like a big deal but to me it stripped away my power and made me dependent on my parents to advocate for me the way they did when I was a child. To a certain extent it also stripped me of my rights as an adult and an individual. To be fair, many of the clients of the agency are children, but I still would have liked to have been recognised.

In health news I must advocate for myself once again. The medical mystery is no longer a mystery. I have been diagnosed with Vasculitis. Basically Vasculitis is an inflamation of the blood vessels that can affect any part of the body and cause organ damage. The good news is it is treatable with steriods and possibly immune suppressent medication. I may also need medication to deal with the side effects of the steriods etc and also to deal with the damage that has been done to my body in the last 3 and a half years of searching for answers. So now I must advocate for the right doctors and medications to treat the vasculitis, all while maintaining a balance of my needs in relation to the Cerebral Palsy and trying to maintain a ‘normal’ life. Wish me luck!

A letter to those I admire

Dear caringbridge and carepage and blog friends,

Many weeks ago I was given the homework task of writing to a person I admire now I’m not usually one to leave my homework to the last minute but I really struggled with this one. I struggled to find somebody who I’d admired. I think this is because my own values have been changing so much lately and the qualities that I admire in other people are also ever changing. When once I would have chosen a sportsmen such as Mark Skaife or a singer such as Adam brand for the way they haven’t let fame go to their heads and their dedication to their chosen careers, I have recently began to look at life in an entirely different light.

I now admire too many people to just name one. I admire the kids and adults who go through chemo with a smile on their face, I admire those who learn to walk and talk again through laughter and not tears.

I have been called an inspiration many times since I started my caringbridge site and my carepage. I don’t see myself as doing anything other than living my life as best as I know how and trying to be the best person I can be. If this helps others in some way then it is a bonus.

I have learnt a lot about myself and how I want to live my life from the people who use the sites and their families. I have learnt that it is more important to live each day as if it’s your last than to sweat on the small stuff, however the little things are what makes me happiest.

I have also come to realise that no matter how bad the stuff going on in my life seems at the time there is always somebody going through more than I am. Despite, this it is okay to get on with my life as best as I can and I will always have the support of those who love and care about me.

There is much more that I have learnt and too many people that have helped me to realise all this. In short if you are reading this then I admire you and thank you for your inspiration.

Love Karen.

Gremlins and Pollyanna

Anybody out there remember the movie Gremlins? Well the Gremlins have been at work again. I wrote a post yesterday both on here and on my caringbridge and carepage websites and they all got eaten. So now I am retyping the post in word so it can’t get eaten again. Anyway enough about the Gremlins, although I have an idea for a post abut them which will probably appear tomorrow.

A friend recently gave me what I consider the best advice I have had for a long time. He said there is a positive in every situation- we just have to find it. While I am not about to go all Pollyanna on you all, I do think its good advice and have been thinking about it a lot since our conversation. Sometimes the positives are easy to find and other times we need to look harder for them. The positive in losing my posts might be that I am explaining better this time. The positives in having undiagnosed chronic health issues for 3+ years are harder to find. I guess the thing that I hope is positive is that by the time the doctors figure out what is wrong with me (we think they have figured it out but are waiting on biopsy results to be sure) that the treatment will be better. Another positive in the situation is that I have met a bunch of wonderful, kind and caring people who I may not have met otherwise.

What are the positives in your life today?

She’s back

It has been awhile since my last post again. But I am back and plan to start posting each day again. I have been inspired to write by many events and plan on writing about each of them in the coming days. I thought I would fill you in on what has been going on in my life since I last wrote. I am closer to answers to the medical mystery as a biopsy of the strange lumps on my legs was finally done. I don’t have the results yet, but I am hopeful that they will lead my doctors in the right direction.

In 11 weeks I will have completed my first year of law school. I am working hard (and that’s probably my biggest reason for neglecting this blog) and loving it.

In family news I am an aunty. Kayden was born on the second of July and he is so cute!

Well not much else is going on. If you are reading this please leave a comment so I know you are out there.

Summer reading for children

This is another post for the Friendly book nook’s Summer reading extravaganza. I don’t have kids but I thought I would tell you about some of my favorite books that are designed for teenagers or young people.

1. the Ranger’s Apprentice books- Ranger’s Apprentice is the title of a fantasy series by author John Flanagan. The first book in the series was released in Australia in November 2004 and in the United States in June 2005^[1]. So far, seven books have been released in Australia, with other countries including the United States and United Kingdom following behind. The series follows the adventures of Will, an orphan who becomes an apprentice Ranger, and his master Halt as they strive to keep the Kingdom of Araluen safe from invaders, traitors and threats. John Flanagan has stated in an auto-reply to those who email him, “To those of you who wrote to tell me you enjoy the books, thank you so much. I really do enjoy hearing from you. We’ve just signed a movie option deal for the series so it’s looking good for at least one Rangers movie in the next few years. Maybe more.” This was exciting news for me.

2. The Harry Potter series

Once again I’m sure I’ll think of more later so be on the lookout for more posts in coming days.

Summer reads

This post is a part of the Friendly Book Nooks summer reading extravaganza! You can find it here http://thefriendlybooknook.com/ (I am sorry but I can’t get link’s to work here). It is actually winter here in Australia but there is no better time to curl up with a good book. So I thought I would post about my favorite reads here.

1. Any Jodi Picoult book- the first one of hers that I read was My Sister’s Keeper. It tells the story of Anna a 13 year old who sues her parents for the right to her own body after they want her to donate a kidney to her sister, Kate, who has Leukemia. The plot is way more complicated but I don’t want to say too much and give it away. My Sister’s Keeper (like all of Pucoult’s novels) made me think and tugged at my heart strings. I really enjoyed it.

2. Cathy Kelly is a new find for me. She is listed as a romance writer but romance was not the central feature of her books for me. They are much deeper than that and I am enjoying unearthing all the layers of her books.

These are just my current favourites and I am sure I will think of more so I will write more posts on this in the future.

The Friendly Book Nook Summer Reading Extravaganza!

<a href=”http://thefriendlybooknook.com”><img src=”http://i251.photobucket.com/albums/gg290/thefriendlybooknook/FBNButton3.jpg” alt=”The Friendly Book nook” /></a>

June 23rd-27th The Friendly Book Nook will be having a Summer Reading Extravaganza! Each day we will have a topic about summer reading that we encourage you to post about on your blog! It should be a great chance to get a lot of ideas for books to read over the summer as well as ways to encourage your children to spend some of their time reading.There are also prizes! Through regular participation you will have the chance to win one of the following:1) Inspirational Fiction Lot: Includes Skizzer by A.J. Kiesling, A Mending at the Edge by Jane Kirkpatrick, In the Dead of Winter by Nancy Mehl, To Trust a Friend by Lynn Bullock, and a special cross bookmark made by Rabuna Fi.

2) A brand new signed copy of Stealing Athena by Karen Essex.

3) A ten dollar Amazon gift card!

If you would like to donate some prizes to add to these, please contact Amy at thefriendlybooknook AT gmail DOT com.

Here’s how to be eligible to win one of these prizes:

For bloggers:
1) Post a message on your blog inviting your readers to join in the Summer Reading Extravaganza. (required)
2) Participate in the Summer Reading Extravaganza. For each day you participate, you will receive an entry!
3) For a bonus entry, write a wrap-up post at the end of the week linking to your favorite posts from the week.
4) Add the button to your sidebar for another bonus entry!

For non-bloggers:
1) Participate by leaving comments on participants blogs. For each comment you will receive an entry.
2) Send an email at the end of the week to thefriendlybooknook AT gmail DOT com with links to the posts you commented on.

Thanks you all for helping us make it the best it can be!