Archive for August, 2008

Advocacy

August 16, 2008

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

August 15, 2008

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

August 4, 2008

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

August 1, 2008

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.