Thursday, 29 January 2009


Here I am with sweat running down my back, neck and face. It has been over 40 degrees centigrade here for the past 3 days. Yesterday it was 45.7!! And this is going to continue at 40, 39 or 38 degrees for the next whole week!!!

I don't have cooling airconditioning (don't like it and don't really need it) and just use fans to move the air. If you haven't noticed I do have a garden with many large trees which generally keeps my house relatively cool even on the worst days. But this week the house is going to heat up. It's 33 in my back room today which is the most heat vulnerable of the lot and the room I spend most time in. In the core of the house it is about 30 degrees at the moment. I keep the house shut up and all the blinds down and all doors shut. This helps a lot but when heat is sustained the house does eventually heat up. Ah well I am a true blue Aussie woman and I can take it.

What I didn't think I could take was the diagnosis of Crohn's disease that came after being in hospital for week after a month of terrible gut pain. And the name Crohn's is not on. It reeks of old and decrepit and I am neither.. It reeks of a cranky old crone and I am not that either (some may argue)..

This is what I wrote to friends about the whole episode "Not to put too fine detail on it all I had been having bowel problems with awful pain getting worse for a month and going to the doctor but not getting better.  I had been having on and off problems for the whole year actually and was getting slowly run down I reckon.  I was being too stoic but got to the point of calling the ambulance for myself at 2am on the night of the meeting 5th Dec that Wayne said I didn’t sound too good at (I sure didn’t Wayne!!!).  The upshot is probably Crohn’s Disease.  Now ain’t that a shocking name. Although I was very crook and weak as a kitten I feel terrific now – am on steroids for a couple of months to get it all under control and they are making me speedy and with a ravenous appetite!!  Unfortunately they are not the sort of steroids that grow muscles as I did inquire of the doctors as I do have Spinal Muscular Atrophy and was hoping for big muscles – damn.  And also a Immunomodulatory drug (long term or forever) to moderate my immune system which has gotten too keen and ends up attacking the colon and making it inflamed causing blockage.  As you can see I have learnt a lot in 3 weeks.  It’s a chronic condition and can recur.  I am however thinking very positive and determined that it will be mild and hardly ever bother me!!!!"

I must say that at first diagnosis I had thoughts of driving myself (in my chair) in front of a moving train. Now that was a desperate over reaction because I had known two abloid friends with Crohn's 30 yrs ago and they suffered very badly and I thought that with SMA and Crohn's that would be too much for a bear to bear. BUT, firstly, I would not inflict my death on an innocent train driver and anyway I won't let a little medical condition get me down and also the treatment has improved. Now, the treatment which is steroids for a period until the colon inflammation subsides - now dig the "side effects", aching bones, sore throat, flu like feeling, dry cough, rash and to top it off the best of them all (remembering that SMA Spinal Muscular Atrophy means ALL of my muscles are weak) weakened arms and legs!!!! Now is that fair!!!

Anyway I am rolling through all the side effects and they are slowly going except the weakness so far. I only have 5 weeks left on the steroids so things will improve more.

As I said I spent 3 weeks in hospital which included xmas day and this is what wrote to friends again cos it wasn't all bad and I did have a good rest "Funnily enough I had an excellent xmas day in hospital with some extra treats in my meals and a friend came to visit in the afternoon.  We went out into the lovely garden at the QEH on a warm day and got stuck into a bottle of Sparkling Burgundy (well I did anyway, she had one glass as was driving!) and yakked and partied a bit.  I weaved my way back up to the ward in time for another lovely meal and a yak with my room mate Betty.

The QEH (Queen Elizabeth Hospital Sth Aust) is great and I was well looked after.  Only two bed wards or single rooms in a new wing, helpful lovely nurses, good food and clean sheets every day.  Loved ticking the boxes every day to order meals and breakfast in bed!  Rest and recovery at last.

What’s more I came home to my first ever DSP bonus in my bank account.  WOO HOO!! Ain’t life grand!

To change the subject the weather here has been perfect – anywhere between 24 and 30. Been doing some gardening, weeding, pond maintenance and tidying up. Things are looking good. EXCEPT. Found out that the reason my creeper on the side fence outside my kitchen has been going white over the past couple of months and then my tomatoes and then while in hospital my herbs and other vege plants IS BECAUSE the old bastard over the fence has been spraying my fence creeper a pink Tecoma and Honeysuckle (cos it pokes over the top of the fence) with HERBICIDE!!!!!!!!! WTF!! Heard him telling his friend that he sprays his garden with “a two pack spray to kill all the weeds”. Twice now I have found heavy white splashes of a milky looking liquid all over my kitchen windows and wondered where it came from. It’s him shooting his poison onto the creeper over the fence and a full three metres onto my windows!!!! So I went and saw him and asked him if he had been spraying my creeper and he owned up to it SO told him he can only cut the offending bits off and that he can’t spray my creeper and that he has been poisoning my vege garden and right over to my window and in my open window. I have cut the dead/white bits off, fertilized and watered so I hope everything recovers ok. I have taken photos of it all including the poison splots on the windows so if he does it again I will ring his landlord the Government Housing Authority and then next to Court. Goodness me I abhor plant haters!!!

I have been taking it easy for the whole of January and doing a stock take of my life and how I live it, so changes are happening. I am feeling very positive and enjoying myself going out with friends. Off to the Zoo at night tomorrow with Mags and her mum Kars - should be fun and hopefully cooler at night too!

I have taken some new photos of the garden again so check out the photos link on the side column here. I have planted some foxgloves, silver cineraria and campanula plants and forget me not, basil, spring onion, chilli and tarragon seeds and have been dosing the soil with soil wetter stuff so that it absorbs the water instead of running off. It works a treat. My lettuce grew marvelously while in hospital but I can't eat it as I am a low residue diet for awhile. So the radishes and spinach are being given away and hey the tomatoes didn't get to produce before being poisoned and are now recovering hopefully in time to produce some lovely tomatoes when I am allowed to eat them!! Soon I hope.

I have more to write of an activist vein on my experience of hospital and since in relation to having a disability... but later...

Thursday, 15 January 2009

Here I am

I have been sick. I have been in hospital. I am ok but am still struggling. I will write more on my stuff later and catch you all up and answer your queries from when I was absent especially Gina

I have been compelled to write this post today to repost Dave Hingsburger's post of yesterday from his blog "Chewing the Fat". I am appalled even tho I know this sort of thing does happen. Here it is in full.

Barry Baker.

Remember that name.

Let me tell you a bit about him. He was this 59 year old guy who lived a lone in the home he grew up in. His parents passed away. As a batchelor in his home, it grew into a state of messiness that is common for college kids and me on busy weeks. He'd had a series of health problems, he was overweight, he'd had a couple of hip surgeries and he walked with crutches. Barry, though, wasn't one to sit alone at home. His life was as exactly full as he wanted it to be. He took a cab every day to his workplace and every Sunday, like clockwork, he took a bus to his favourite pub. He was known in his neighbourhood and respected as a man with an intellectual disability who was making it on his own.

Then on November 29 of last year, a few weeks ago, he suffered chest pains. Wanting to live and knowing what to do, he called emergency services. The operator stayed on the phone with him as he waited for the ambulance to arrive. He collapsed and the operater listened to every sound hoping to hear his door open and help arrive. Well, she did hear everything, and what she heard astonished her.

The two ambulance attendants saw this big, fat, disabled guy, living in a messy home. They stood talking about him and decided that he wasn't worth saving. So they stood there and let him die, deciding to tell everyone that he was dead when they arrived. One more cripple out of the way, one more unnecessary life done away with. One more of us gone.

The operator immediately handed in the tape. Charges and investigations ... blah, blah, blah ...

A note of fear creeps into my life. What would ambulance attendants see if they came for me. A fat, disabled guy, in an apartment full of wheelchairs, long reachers, and grab bars. What value would my life seem if it was just my body they saw - not my connections, not my routines, not my hopes and dreams.

Sometimes there seems to me to be an immense gulf between we with disabilities and thee without - sometimes disphobia seems to be such a dark and evil prejudice.

Today, I mourn Barry Baker.

I tell his story here.

I will tell 5 other people his story.

Barry will live today, here in Toronto.

I hope you will join me and bring Barry's story to others, begin a conversation of the dangers of disphobia and the need for us to be alert to the fact that those who are supposed to save us, may indeed kill us, that those who are supposed to care for us, may indeed hate us, that those who we are supposed to trust - can't be.


A Victim of Bigotry

posted by Dave Hingsburger at 6:32 AM on Jan 14, 2009