The Spaz with Pizazz

ANOTHER HELL WEEK

 

On the 1st of May I came home from an out-patient appointment that I'd been told would be an appointment to set a surgery date but left very depressed and even more pissed off as Sam made sure I'd not run out in front of the first bus I saw. But I reassured him I wouldn't as it would traumatise some innocent bus driver and passengers.

 

And why was I such a happy chappy. Well, the surgeon who many months ago wanted to do a minor tendon release has now decided he needs to consult further with a particular doctor who already is in full agreement with the operation. He fears making my condition worse. So he is making me wait for another six weeks or so then we might get an appointment. I've lost all faith and confidence that I will be free of my legs that have ruined my life.

 

Concerns over making my condition worse!! My spine has started calcifying and thus fusing due to being stuck in a wheelchair 24/7. It feels like my twist is worsening weekly. I'm now with a constant pressure area needing padding with a special plaster and Sam tearing his hair out with making sure my cushion is correctly placed. It's harder and harder to clean me due to inaccessibility. My penis is getting crushed and causing pressure sores and areas that require me to be without urodomes occasionally as my penis also swells up. So more work for Sam as he has to keep changing nappies and bags that he attaches to my penis. And it's getting more and more painful to sit back in my wheelchair to sleep due to the stiffening of my spine. And the doctor's worried about worsening my condition!! I don't want to live so really do I care about risking more pain. NO. NO. NO. I'm 40 years of age. I'm not a child and it is my business. The fact that some with cerebral palsy have had failed or inappropriate operations is no reason or excuse not to give me a chance. I'm not the 15 year old cerebral palsy boy whose spine was surgically fused recently by some 'professional' and ruined further the child's life. How can I be compared to this unfortunate boy and some doctor's stuff up!! Just a convenient cop out not to deal with me and my situation, I feel.

 

 

Permanent pressure area.

 

Told I can't force doctors to treat me if they don't want to. But since there are a couple of surgeons wanting to help me that those that don't are aware of and are preventing them is just down right malpractice and abuse of their power and position as far as I am concerned. The appropriate Federal Government health representative knows about the situation but her hands are tied. All because of a couple of very powerful public doctors. But since I'm at the mercy of Australia's public health system they have the last say to whether I live or die. Other doctors did the same to Sam when the Federal Governments over the years left him at the mercy of public doctors though fully aware of his plight and cries for help and now they are determined the same happens to me it seems. THANKS. 

 

My electric wheelchair still is not working properly. Same problems. I was bed ridden for eight weeks waiting for the return of my wheelchair. So I am not impressed. How long will I have to wait this time. I can't even get fitted for my new electric wheelchair till I have had the appropriate operations on my legs!! I'm just being lead around in circles.

 

A couple of days after the 1st of May operation let down my face breaks out with severe psoriasis again. Then I come down with a cold. This is probably all stress related. I want Sam to put me out of my misery. But he says 'No bleep bleeping way' as he's the one that will be faced with up to 14 years in prison for helping me suicide when it's the doctors' inaction to help me that has brought me to this lowest of lowest miseries. We are both very unhappy he was stupid enough to interfere with my suicide attempt back in 2009. Now I'm trapped and he's trapped seeing me in more pain and misery.

 

 
        

Above: Bandage holding a flannel in place last night for my runny nose due to my cold and my left eye is runny, swollen and itchy that I left hospital with during my last stay having laid on it for several days. Sam's giving it salt baths. And psoriasis that is easing slowly with emu oil. Applying bicarb's stinging too much at the moment.

 

Then to cap off a crappy week my penis swelled up this morning and looks like I'll be without urodomes for a few days peeing into a bloody plastic bag filled with nappies. My penis guard isn't comfortable anymore as the legs crush it into my groin.

 

And Sam's having to take sedatives with all that is happening with the doctor run-a-round. And more pain killers. Which is making me feel even worse and weighed down with guilt seeing him have to take more drugs. He tried a touch of alcohol the other night. Very, very small amount and it still made him feel ill for two days. He says not to feel guilty as it's he who's at fault for interfering with my 2009 suicide attempt. At least he agrees with me that trying to start a new life in NSW was a waste of time. Australia's treatment of many carers and too many handicapped is deplorable and Australia wide.