Monday, July 16, 2012

1 Year 5 Months

W O W 
What an enormous month! I was in the newspaper for the Pride of Australia Award. No more news on that at this stage. I completed the 21 challenge. I built some websites. I started study. Lots of news on that one. I got some test results back and am having some medication changes. Chances are I will miss things in this post as I have a phenomenal headache right now but I will continue with this post all the same.

Aside from all the new things there are some not so new things. First of all the Brisbane Running Festival is only a few weeks away! I am raising funds for the Brain foundation for this run and for the Bridge to Brisbane on September 2nd. If you can help at all it is very much appreciated. There is no where near enough funding for brains. These guys cover just about as many brain related things as you can think of, migraine, epilepsy, Parkinson's, cancer, spinal injury and so much more. Why not go and have a look at their site and see for your self? In November I'll be doing Relay for Life as part of a team with my youngest son, my husband, My sister in law and my brothers.

As I said I have built some websites. I decided to play around and see what I could come up with and this is the result so far Colloid Cyst Survivors (including a mobile site), Julia Robertson Photography and last but by no means least a Fundraising page to help me keep track of what I am doing!

I started study on July 9! I'm doing a dual cert in Business and Business Administration. It's been a big leap into the world of study and so many other things. I am catching buses to and from TAFE each day, making new friends, doing homework, keeping up with study and tracking timetables. I am doing pretty well so far. I have come across one hurdle so far. I am going to have to talk to my physio about my left arm again. I am really struggling with the touch typing segment of the course as my left arm gets very tired very quickly and my hand eye co ordination seems to be a bit off there. I'm sure I can either build up the strength in that arm or work around it somehow, it;s just a bit frustrating at the moment, not to mention very painful.

I am loving studying! I can not adequately describe just how much more alive and "awake" I feel. I need a bit more sleep at the moment on school days and have to manage my time and energy more closely at the moment but its fantastic feeling mostly "normal"

Results and medication changes. I went into hospital for some tests last month and the results were "delayed in the mail" I had a copy sent to me by my GP last week and will have to go in and see her to discuss the rest  of them but the bit I did understand in among all the graphs and EEG lines was that I do not have sleep aponea. YAY! I took my leg scan in ( the one i had done some months ago and forgot about) and discovered that the lump the radiologist said was an over developed muscle is actually a lipoma. Nothing to worry about. It can be removed surgically if required.

I am going through a change of medication at the moment. The old nasty medication which has been making my hair fall out, giving my a fantastic facial rash and killing my kidneys, is being phased out and a new medication is taking it's place. It's a long process to get the new medication up to a suitable level to start stepping down the old medication to get rid of it. I "should be off the old one by the end of August all things being fair and equal. The new medication has had some "interesting" side effects so far which seem to pop up for a few days each time the dose increases. Mostly headache and nausea (nothing new to me there) and burping orange juice flavour! Very odd indeed considering its Blackberry flavoured and I don't drink orange juice.

Wednesday, July 4, 2012

Big update (not waiting til 17 months)

Big News Part 1

My lovely friend in Denmark, Ted Ewen, nominated me for this award! Nominations closed yesterday. This article appeared in the Logan West leader and the Albert and Logan News on June 27th.

Note it was the Brisbane surgeons who were unwilling to operate, and although benign, it was life-threatening. A benign tumor is basically a tumor that doesn't spread to other parts of the body. A tumor is a mass of tissue that serves no useful purpose and generally exists at the expense of healthy tissues. Examples of this include tumors which produce a "mass effect" (compression of vital organs such as blood vessels)

Colloid cysts, while uncommon, are important to identify correctly because of their association with sudden death. They are relatively rare and account for less than 1% of all brain tumors in adults. Because of its location, it can cause obstructive hydrocephalus and increased intracranial pressure. Mine was causing intermittent hydrocephalus and gradually pushing one half of my brain around. This caused seizures aside from constant extreme pain and nausea. 

Lesson for the day Benign does not mean not life threatening!

Big news Part 2

Yesterday I became a student again!

Monday July 9 I start my Dual certification in Business and Business Admin. I am really quite looking forward to it. Today I had an meeting with Student disability services as I have an ABI and  epilepsy to talk to them about my course and what I may or may not need help with. I have to say I was not greatly impressed with the meeting. However I have a stubborn streak a mile wide so I am even more determined that I ever was to not only get through this course but to do it with as little assistance as possible! My stubborn-fu is strong. 

Meanwhile I have gotten my hands on a year 10 mathematics book to try and reteach myself some of the things that went missing after surgery. I have a few other books coming in the mail as well. 

Life is a huge new adventure for me in SO many ways! I am choosing to enjoy it as much as I can and make the most of every part I can get my hands on. Life is far too short to worry about the what if's. Get out, do the things that inspire you and make your heart soar. (as long as you aren't hurting anyone else) Try something new or something you always wanted to try but didn't have the time, energy, confidence (whatever excuse you came up with) to do it. At worst you wont like it but at least you've given it a go, who knows you may like it and you may just be brilliant at it if you give yourself half a chance.

Be your own advocate! No one can live your life expect for you. You'll do a beautiful job of it!

The Breakfast Flower

Back in October 2010, thoroughly sick to death of taking a armload of medication every day I decided to get creative with it. The Breakfast flower was born. Since then I have photographed the devolution and now evolution of the breakfast flower and my (morning) medication as changed. Over the next several weeks my flower will be altering fairly often so I thought I would explain it here!

April 2012

July 2012