Monthly Archives: January 2017

Twiddley diddley dee Tweet, tweet

I have found a new use for Twitter. we all use it to see what the world is doing, to keep up to date, to interact with Twitter friends and for a bit of entertainment, or aggravation, depending on the day.

twitter

With my wonderful life of passing out and sleeping all the time, twitter is useful. If I am alone in the house I can work out if I have passed out by looking at twitter. I keep the laptop near me and look at it and I can see how many notifications and new tweets from peeps ! (I won’t do that joke again)

twitter_example_1024_by_archive_alicorn-d7gb97a

This allows  me to know that I have missed some time and I then know I have passed out. It is simple but effective for me at least. I am sure there is some medical or scientific reason for not using this system. But I think when you have to make up the rules as you go along you have to use whatever works best for you.

Doing this I can now gauge better how many times a day I pass out to tell the doctors. Like I said it works a treat for me when I am at home alone and have to count how many times I pass out.

The other way I work out if I have passed out is if I am on the floor, that is a bit of a give away that something went terribly wrong at some point.

 


I feel like Sleeping Beauty

As the search for why I keep passing out and having vague outs continues. I am either stuck in the house of on medical premises. I cannot go a day without passing out a couple of times, at the moment and of course that limits what I can do.

I started fainting a lot in October/November, I thought it was the usual brain tumour doesn’t like heat and it also doesn’t like stress.  At this time I started to get worse headaches and a lot of blinding flashes. I had a med change to try to stop this. Up the dose of this and lower the dose of that to try to fix it. But now it seems like they might actually have an answer and it is funny, that yet again my problems stem from the medications that the doctors give me.

I was put on a new anti-depressant to help stop the fainting. You see, anti-depressants help the tumour it stops some of the effects it has on me. The new wonder-drug they put me didn’t seem to work, so they upped the dose. I had more vague outs and fainting fits. I was checked for other problems. Had the EKG to rule out epilepsy, they were sure that I was having epileptic fits and that all would be sorted. But this came back fine.

Just to be on the safe side I was given some epileptic medication, blood pressure medication and they doubled the anti-depressant. So I have been struggling continually. I have been finding the heat usually bad to deal with. Yeah brain tumour doesn’t like heat so I feel it. But this has been extreme. I am exhausted from the heat just walking out of my room. I have been spending a lot of days in my lounge with two fans on me. If I can get off early before the heat I will go to the shopping centre for  a while. But you can understand I am not really fit to be driving.

I have been unable to really do anything for months now, it has been bad I  have to remind myself to be grateful that I am still here and that it’s only heat and other things and it will settle down as the weather cools down.

Finally after all this time the doctors had a thought. Maybe the anti-depressant has something to do with it. So I am being weaned off the anti-depressant and low and behold I am not having vague outs. I am just having fainting fits. While this medication is slowly being lowered so I can stop taking it, my painkillers have increased to deal with the pain and flashes. So I am now not only hot and bothered, but I am drowsy all the time. I get up, a couple of hours later I have a catnap, couple of hours after that, another catnap and then at night go to bed. This is much better than before I am so happy about that.

I have to continue to see doctor at least once a week, blood tests to check my medication level, then I will change the anti-depressant to another drug and that should fingers crossed deal with the fainting. But like I said at the start, it’s funny that yet again due to medications I have suffered more than from the original complaint.

 


Bogan Pride Day

Right on the heels of “Good will to all men” comes the hate associated with Australia Day. Yep it’s that time of the year, when the bigots can come out of hiding and start attacking anyone who is different to them.

26th of January, Bogan Pride Day, a day of thongs, beer and BBQ’s. A day to get drunk. the day to hijack the Southern Cross and use it for violence. The Southern Cross, becomes the Aussie Swastika, beware when you see it, especially on a bald head. The day has been taken over as a day for drunkenness, that’s not showing pride or unity.

Racist attacks on social media rise and it’s all in the name of patriotism. I don’t understand why a day that is supposed to unite a nation causes so much trouble. I know why Indigenous people don’t like it, if you read your history you would know too. But people who talk of the day as the start of the nation, need to read their history.  Actually have a read of the articles on IndigenousX about the day and changes to the date. http://indigenousx.com.au

Some days I dread going to the shops, you see them and you know that they are going to give you dirty looks or say something to you. The worst is that no one will help you. People just stand around and watch, maybe they don’t want to get involved, maybe they are scared. I have tried to teach my kids to laugh at the racists this time of year, because most of them while showing their true colours are only brave with others joining in the fray.

My daughter found out just how people change during the Lamb ad season. A friend of many years, posted a comment about changing the date of Australia Day. My daughter responded as to why the change should happen. She was shocked at the racial attack from this friend and other friends. She was told she should accept the fact that her people are dying out. Told to go back to the stone age.  Yep this time of year the blood boils with false patriotism and love of country. Yet these same people have no idea on the history of the country.

I am no expert on these matters but I am a bit of an expert on racism and bigotry, having copped it in large doses all my life. I think some of this can be changed if we change the date. I am at the moment leaning towards the May8 movement. A day of mateship, what could be more Australian than that.

 


Centrelink Debts

I am sharing three letters that came to me that involve Centrelink Debt, This makes me wonder how many others are affected by this, especially patients who are coming to the end of their life? Will Centrelink take the debt out of the funeral payment? If they did that would really make things hard for some families.

If you have a debt contact Not My Debt http://notmydebt.com.au/

 

Hey Sis, I copped a cenrelink debt and I don’t know how. I have a throat cancer been off work for a couple of years and then I get this letter telling me I owe money. My daughter rang the koorie people in there and asked how I got this debt. She was told that I worked last year (2015) but I don’t know how. I have been sick and on the sickness benefits since 2014. Good luck to them getting the money, doctor says I have a couple of months left. They can follow me to hell to get it.

Image result for Centrelink debt

I thought I would let you know to pass on to others that Centrelink is targeting cancer patients. I have a letter asking for me to pay back $500. I waited on the phone for about 2 hours for someone to help me. When I finally spoke to a person I had to be transferred to another person. A wait of 45 minutes. Then when I spoke to someone they told me that I was working when I was having radiotherapy. I told them this and was told that I would have to get proof and take the proof to the office and until I had handed in the proof I would have to start paying back the debt. I can’t really pay back to much at the moment as I am only working part time I am still a bit sick.

Hello Aunty Just in case you or some others might need help with centrelink debt. I think after finding out when the debt is from and how much, you should go to the nearest koori  or Aboriginal TSI organisation or legal aid and then a class action can be done. Contact your local member of parliament both state and federal and ring the media.

 

 


Holidays are over

I haven’t been on since November because of holidays and my tumour is not behaving. Brain Tumours don’t like heat, and well its been very hot here since November.

Since I last posted I have been having a lot of fainting attacks and black-outs, I am talking about being off with the fairies. I am awake, talk to my kids but have no memory of it after.

I had a bad black out many years ago and when I snapped out of it, I was standing over my son with dumbbells in my hand. I had apparently walked away mid sentence with my daughters to go into my sons room and threaten him with these. That was the first time the doctors took it seriously that I was having black outs.

Over the past few weeks I have cried and ran away from my youngest daughter, I was told that I thought she was the devil.

I went to the doctor and was told to keep cool, don’t get stressed or upset (these are things that affect me) and the doctor wanted to put me on Valium.  The problem of fainting and blackouts continued so I stopped taking the Valium. I try to keep cool. I spend my days in front of two fans or library. I do house work in a small bursts. Do a job, then run back to the fan to keep cool. I have tried very hard to not be stressed, or cranky with my kids (if you have teens you know how hard that can be). I rest a lot. But the it just keeps happening.

My constant friend the headache cannot compare with the worry that this is causing me. My headache is worse after an, let us say..episode? I feel like I have a hangover I have a headache and my stomach feels terrible after each event. I think this is from stress and worry about all of this.

I go off to the specialists to discuss this on going issue and two doctors disagree. One wants to admit me to hospital while they run tests. The other, wants to run some tests but do a watch and see. This is my life and my head, I wanted to be admitted to hospital I wanted to have someone see what happens and maybe they can do ECG while I am tripping out. It would ease the burden on my kids, or someone needs to be around mum all the time, just in case.

At the moment I feel like a prisoner in my own house. I am not game to go out, I might faint while driving and kill someone. I might blackout and talk rubbish or do something foolish while I am out of it. I can’t take the youngest out for holiday fun, or even drop her off to catch up with friends. She has to ask her brother.

I will continue doing these tests and hopefully will have something to report soon.