Archive for the ‘Health’ Category

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!

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Prayer request

June 16, 2008

Please keep me in your thoughts and prayers. When I went to the toilet before I think BOTH of my hips dislocated themselves. The left one has done it before (and does it regularly) but the right one has never done it before. Right now my pain is at 9/10 and I think I have had all the pain meds I can. Please pass this prayer request onto others, Love to all,
Karen