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.



PUBLIC HEALTH SYSTEM'S ROAD TO HELL

2:58

Round and round I endlessly go,

Forever chasing my tail.

All the roads long traveled on,

Only seem to lead to some sort of hell.

Hi, Sam here. I'd like to write a lot more after Robbie's video just taken of him. But I am too tired this evening. My head is spinning and literally hurts like I'm in a vice. But I suppose Robbie and I are in an inescapable vice; caught between a rock and a hard place. So I'll be brief.

The System offered to ship Robbie into inappropriate care facilities where distance and my health will prevent me visiting him. Institutionalized for several months till he has a surgery that we all know will make little difference to his mobility and pain. During that time most of his pension will go to a care facility apparently. Someone said it won't. Then I become homeless.

Like Robbie keeps reminding me, I am stupid to think anything will change as nothing has in 19 years unless it was for the worse. A few thousand dollars would have fixed up most of our problems. But instead the government has spent needlessly over two million dollars of tax payers' money on us and chooses to continue to do so. $40,000 was all that was needed. Misery and suffering is a multi-million dollar spinner. And if one little fish gets away the others might hear about it.

And because I refuse to commit my friend to an institution permanently I can rot in the bed I made for myself, apparently.



HOSPITAL DIARY APRIL 2013 TO WHENEVER

 

 

24 Hours into my third hospital stay in seven months. 17th April, 2013.

 

Had a CT of my lower spine to investigate further the calcification showing on my spine and to determine whether my tendons have started to calcify. Get the results tomorrow. If they can't do tendon release I've asked the doctors to kill me. But since humans don't get the same respect as animals who are humanely put out of their suffering I will join thousand upon thousands rotting in a home left to slowly die in agony. Sam will not be able to keep me at home bedridden. AND I don't want to live the next 40 years of my life with this never ending suffering, immobility and imprisonment. Not that I'll live anywhere near another 40 with my current deterioration. But Sam believes even with calcification my situation is operable (I wish I could share his same optimism but I just can't), it is just a case of finding surgeons with courage, confidence and who know what they are doing. But lets jump that hurdle if and when...apparently. 

 

 

Sam brought up my iPad to help me from going insane after stressing out over the constant bombardment of doctors' questions that I could not answer and who would not phone Sam when I asked them.

After my pressure sore healed I was given the ultimatum of leaving hospital with Sam or be sent to the Blue Mountains for several months until the stalling public doctors would arrange a tendon release to prevent further pressure sores due to the worsening twist in my hip. Up at the Mountains there are no appropriate facilities or enough staff to care for my complex needs as I spent four weeks there several months ago and know exactly what would be awaiting me. I'd be bed ridden mostly and Sam would not be able to visit due to his exhaustion and degenerative spinal disease being irritated by long travel. The relevant doctors didn't care. Nor did they care that Sam was bringing me home already exhausted trying to care for my leg problems. Though they could have done the surgery while I was already in hospital nothing was going to get them to help me and Sam.

 

So Sam took me home and has 'inappropriate' care support. The authorities insisted he took the help though they agreed with him it wouldn't help much. But to send me home without it would be a bad reflection of the hospital and the whole 'care' system State wide. Must look as thought the system is working and caring for the disabled and their carers and that the 'packages' are so helpful. Yes, some carers and disabled are being helped by the packages but my needs are so complex nothing short of someone moving in would help and the authorities agreed but also agreed that that was not going to happen.

 

Again, I am so depressed over all this. I just want a bloody lethal injection and have my miserable life over with. If I had the above knee amputation recommended by a world leading orthopaedic surgeon I'd not need anyone coming into our home. Help that someone who really needed it could access. There are always complaints that there is not enough help for the carers and disabled! I wonder why. Give appropriate help and support and some of the resources could be freed up for others.

 

 



A DAY OUT AT LAST!!!

 

Went to a nearby major shopping centre yesterday (Thursday 11th April) and had a lovely bowl of spaghetti bolognaise and garlic bread followed by a tasty cappuccino. It's my first trip out in months apart from the wheelchair test drive a couple weeks ago. All's well with the electric wheelchair at the moment after having it for four years.

 

Though we got to the shops driving our own transport - my electric wheelchair and Sam on a mobility scooter - we had to take a taxi home. Sam's loan scooter stopped in the middle of a main road at the traffic lights and would not move. Some pedestrians pushed him to safety.

But we had a good time despite ending the day breaking down - but break downs happen - and did not rush around. Not that we could rush around. My brain damage makes me see things constantly so most of the time I don't see a lot of things that are real around me. So I follow Sam closely behind his scooter while he drives very slowly and watches me in his rear mirror. He has to constantly instruct me where I can and can't go. DO NOT MOVE being the most repeated. I tend to just take off without looking where I am going so if I am not told when the coast is clear I'd run someone over or get run over by a car. It's not the most relaxing time for Sam when he has to take me out having to be constantly alert over my driving safety. He hopes to one day get a powerful mobility scooter designed for two where I can sit behind him, not side by side, and then go cruising without the stress.

 

Sam was hoping the day out would help me sleep. Not so, unfortunately, even though my back was killing me (X-rays taken on Tuesday show I've started developing calcification of my lower spine probably due to my immobility) and despite feeling exhausted I was hyped up. When I went to sleep Thursday evening it was only for three hours and I've been up ever since. It's just turned Saturday, five minutes past midnight!! Sam feels like he needs tooth-picks to keep his eyes open.

 

We bought 'iPad for Dummies' while shopping; and a hands free telephone so we can have a land line again. We've not had a land line since January 2009 and Sam hates leaving me at home without a phone. And picked up a stack of DVDs mostly for $2 each and some $5 each!!! Some classics we've both been wanting.

Then we went food shopping so I could experience some of the things we had hoped to do together since arriving in NSW but, due to electric wheelchair problems and having spent so much time in hospital or stuck at home, I've missed out on. So the spaghetti was also a bit of a celebratory meal and the DVDs a treat.



X-RAY DAY

(09-04-2013)

 



 

Outside waiting for a taxi ride to the hospital for an X-ray of my hips and spine. Took two hours to get ready. The twist in my hip is so bad now that I have my first bad pressure sore from sitting in my wheelchair. But I am not going to bed. It is just too painful. Hopefully I will not have to wait too long for a planned partial tendon release of my hip area. Everyday I wait feels like forever.

 

 

With the help of about five people I was hoisted up and wheeled over to the X-ray table. A big thank you to the staff involved at Nepean Hospital. Sam phoned several days before hand to warn staff that I was going to turn up; when and my physical condition and challenges that would be faced. As a result we did not have to wait too long for staff availability and they planned before I arrived. This was about the first time the sling was the right size as they came armed with two sizes and staff arrived who actually knew how to use the hoist. It made a world of difference for all parties.

 

 

We were happy the X-ray table was a lot wider than the one in Darwin. So though in a lot of pain and in my usual fetal position it made rolling me slightly on my side a lot less traumatic. Sam, while propped up by a crutch and dosed with pain killers, wore a lead apron and held my legs still while the images were taken. The staff did a great job getting me back into my wheelchair. Sam and I were very grateful having already spent ages that morning getting ready.

 

 

Afterwards, Sam and I made a trip to the hospital cafe to recover where I had one of my favourite dishes...chips with gravy.

 

 

SPEED READING

 

Reading one of 'The Game of Thrones' novels while waiting in an orthopaedic surgeon's office.

More reading of 'The Game of Thrones' after being plasted with a paste of Bi Carb for a major psoriasis out-break. I managed to read five of the seven books in ten days then I bombed out!! I can generally read a 500 page novel in a day. Then suffer major literary indigestion and do no reading for some weeks or months.

 

I am so bored!!! Not to mention depressed. I want to get out and live. Not sit here day after day reading and playing on my iPad. And waiting for my next comfort eating fix and painful groin clean up. Not only have Sam and I missed our first New South Wales summer out-doors, we also missed the Sydney Easter Show that we were looking so forward to along with numerous other activities we had planned.

 

I've now been back permanently in my electric wheelchair since the 14th of March. I am not looking forward to being in bed again in hospital soon for a minor tendon release for my hips. I can not see it making much of an impact on my legs let alone my life. Then I suppose I will be asked to undergo weeks of painful physiotherapy which I find unbearable at the best of times. Tendon release might make it easier for people to clean me while my life continues to be an existance. LET ME OUT OF HERE!!!



SNIP. SNIP.

 

 

Some weeks ago Sam cut my hair and we blogged about it. Now it's time for a all over shave due to my worsening psoriasis. And since I might be having a few days stay in a hospital soon for minor tendon release for my hip twist my hair won't be a care issue. Actually, I'm generally bald, as is Sam, but moving to the cooler region of NSW of Australia from the killer heat of the Top End of the Northern Territory we decided to let our hair grow a bit. But now it's back to the bald look and a woolly hat for the approaching winter. We love the cold so looking forward to it.

 

So above are the two piles of hair after Sam attacked me with the scissors.

 

 

Then the usual foam-up with watery Sorbolene to soften hard skin flakes from psoriasis that clog up razor blades.

 

 

Cleaning my scalp with the aid of Sam's finger nails all the dead skin has gone and now all squeaky clean the razor blades go to work.

 

 

Thankful that the traumatising clean up is over...

 

 

Sam gives me a warm hug to settle my nerves both mentally and physically. Sadly, this is the only form of a hug I can have as my legs are in the way and are so sensitive to the touch they strike out or go into violent shakes (clonis) and need strapping down. And my wheelchair's foot plates are so huge they're a threat to others shins. Leaning over to hug me is a real strain on anyone's back. Particularly Sam's with him having three and a half discs missing in his upper spine and compression fractures due to degenerative spinal disease. I am so looking forward to having my legs just above my knees removed if possible. To hug normally for the first time in my life...!!! Being mostly free of pain and knowing my legs won't interfere and even cause harm to my hugger so far remains a life time dream.

 

 

After the hug I do my general thing of falling asleep after trauma.

 

 

Now clean shaved the scar from my suicide attempt while in a hospital to end my life due to chronic hip and leg pain back in 2009 is very visible. This is what a flight of stairs with metal capping does and what happens when a psychiatrist records on medical files that nothing is wrong; not even slightly depressed apparently. After all, I'm always smiling, right. NO! When in pain my facial muscles do the 'grin thing' and do not grimace. It's the 'bloody cerebral palsy' smile as Sam puts it. And to make matters worse I start laughing or cracking jokes when I stress out or get down. Most of any giggling I do is stress or fear related and seems to be a form of stress release as I can't go and beat up a punching bag or go for a run...or do ANYTHING for that matter.

 

 

Here I am the next day. The powdery pale appearance is from the dried up saturated solution of Bi Carb applied to my entire face and head to raise my skin's pH levels that my form of psoriasis hates. Leave me a few days without the Bi Carb and I can end up looking like I've been attacked by a blow torch.

We have just made our 13th or 14th house move in seven years!! But we've been reassured we can stay in our new residence for up to five years. STABILITY!! A 'home' to live in and not just a house. Now we have routine and my skin care can be more focused. And Sam can start doing some pottery again soon...hopefully.