Saturday, January 19, 2013

Across that Line.........

Can not believe I haven't updated since last March...almost a year, where has the time gone! It's been a another tough year again for different reasons, to continue from where I left off last year.

I was trying to get some outside help (HomeCare Services) and having issues with the height of my water-bed, my bed was to low for the carer's to be safe from injury. So getting a Hi-Lo bed would suit the carer's, keep them safe and myself. My OT put in a request to the government (Enable NSW, Aids and Equipment Program) for a king-single high capacity Hi-Lo bed that will support the weight of my water-bed. Unfortunately it was denied, they couldn't justify suppling me with a bariatric bed when I'm not obese. Their reasoning was, why was I different from anyone else. Even though it was explained to them how important it is for me to keep warm in winter and to keep my back protected. They agreed it was an unusual case, but they would only pay for the cost of a normal single bed and if I wanted to, I could do a co-payment and I put in the difference for bariatric bed. So that's pretty much what I did do. It was a fair bit of money to fork out and I still had to buy a new water-bed to fit, as mine was only a single bed. I wasn't so cheesed-off with putting in the extra money, but I was cheesed-off with the fact that the Hi-Lo bed is still the property of Enable and if it brakes in anyway I would have to pay to have it fixed. 

I had to wait for funding to become available before I got my bed and HomeCare wouldn't come in until then. So finely Enabled contacted me with the funding but there was another 4 weeks or so to wait for the manufacture to get one in. I had to wait until last year (November 2012) before I got my hi-lo bed, Enable also funded the hoist which I got fairly quickly.

The worst part was tying to arrange HomeCare to be ready to come in, in-time for the delivery of my new bed. I had three appointments with them prior to getting my bed so it would be ready to go. I along with my case worker was under the impression that it was just a matter of havering all the right equipment. Boy where we wrong, I'd be lucky if I'd get a service in the new year, despite having been in their system for years with the cleaning service!!!

Things became more frustrating, as the height of the new hi-lo bed at it's lowest point, was to high. My feet barely reached the floor, making any transfers with help more difficult than it was before. Usually I'm able to sit on the edge of my bed to dress myself but now, that too was taken away. In the mean time it was such a struggle getting going in the mornings. I couldn't get a HomeCare service until  a space becomes available, they couldn't tell me when and there was no waiting list. I was just told to ring every few weeks and hope one becomes available. I had done all the right thing's, spent a heap of money and now I was worse off then before.

I had some real dark day's, some day's even thinking I wish I wouldn't wake the next morning. I had to fight off those thought's, only because I though of how selfish of me. To do that to my family, for them to find me not here the next morning, even though it would solve my problems. Never, have I had any thoughts along these lines before, of course only in passing which I think everyone has had at some stage in their lives. Even having the gut's to pull off something like that. I didn't want to wake-up and find it wasn't successful and possibly being left in a worse condition than I am now. On top of all that it was difficult coming to terms with not being independent anymore, relying on others. And besides it was Christmas, I didn't want to spoil it for everyone, especially for the little ones. I was just tied, stressed and had been fighting a chest infection which I hadn't had in years and was taking ages to shake off. It had been almost a year now and I was over it, I just had to hope that surly in the new year things would have to change.

Well obversely, as you can see I'm still here...LOL...and yes I finely got a service 2 weeks today, 7 day's a week in the mornings, just for now. I will need more in the future, it's a start. 

I feel like a load has been taking off, I was really worried about how I'd cope with a bunch of strangers seeing me at my most vulnerable state. I've been such a private person, it had been playing on my mind for such a long time. I'm not totally comfortable with it, I don't think I'll ever be, especially with being hoisted. I feel exposed and I think I'd die if someone walked in...LOL..... But having said all that I have been surprised at myself, it's not as bad as I imagined it would be. I can say however, I have meet some really nice, caring and interesting people. I was worried that it would be a cold and monotonous experience but apart from the hoisting it's been quite the opposite. I don't think I'll ever totally be comfortable and that's because I'm not comfortable with my own image. I was a little apprehensive that first day, but the carer I had is such a nice person, she made me very comfortable, we clicked straight away. It took a load thanks to you, you'll probably know who you are if you read this.        

More Soon.....             

Friday, March 30, 2012

Crosing the line...........

I'm afraid to say that I haven't been able to regain that little bit of ability I had a few months back. I've crossed that line. The line that I knew was coming down the track, the line I didn't want to cross. Life as I know it will never be the same again. Granted as someone said to me today "it's not the end of the world. That is very true and I agree with that, but it sure feels like it at the moment. In time I'm sure I'll adjust, like I have done so before. But for the time being I feel like I'm losing my independence, dignity, privacy, sense of style and control, not only of myself but also control of when and what I want to do. It just feels like this is a big step to adjust to and sadly it's not the last. In fact, it's just the start of many more difficult steps I'm gong to need to adjust to, each step will probability be more difficult. 

I think, that's why it's cutting so deep, deeper than I care to admit. But what's annoying me more, is the people around me. You would think they would be more supportive, understanding of how confronting and difficult this is to get through. Don't get me wrong they care and everything but they just don't get it, they have no clue on what's going on emotionally. It's probability because I've done such a good job in the passed of holding it together that they can't see the wood for the trees, as it where. I'm not sure how to explain it to them, I'm not sure that I should even need to explain it...they should be able to see it for themselves. I sometimes wonder who has the disability, pardon the pun. I should know better, it's never been there...I don't know why I expected that this time it would be any different from time before.

But anyway enough feeling sorry for myself. At this stage I'm waiting to get some person assistance with getting up in the morning and transferring in and out of my chair. Although I'm able to transfer with help, it is difficult not only for me but for the person who's helping me. Which at the moment is my dad, he is the strongest, more able to support me. Unfortunately this is unsatisfactory for the long term, for him and for me. So, I'm working on getting some outside help to come in the mornings then again at night, this at first seamed straight forward enough in the beginning. But not so, I have a water bed for over 30 odd years or so, it has protected me from pressure sores so far. The care worker's are not happy with the height of my bed and will only help if I'm hoisted. Which I do understand and is fair enough, they don't want to injure their backs trying to help me. This is the difficult part for me, I may have to give up my water bed and it is something that has worked for me, it accommodates my twisted spine. Even the specialized air mattress that are available don't measure up to a water bed. A water bed is also heated, it keeps me nice and cosy in winter, helps with the stiffness. 

So they want me to get an electric bed, Hi-Lo bed so it can be raised to the level of the carers. Unfortunately the electric bed has no heating and you can't use an electric blanket, it seams to me I'm giving up a lot. Not only am I giving up my independence but my comfort as well, I get really cold in winter, I stiffen up like a board. There's also not transferring and bearing weight on my legs, I'm in danger of needing a cather, which in turn will bring extra dramas and a lot maintenance. 

However there maybe a glimmer of hope, not happy with the idea of giving up my water bed, I wondered if it were possible to place my soft-sided water bed bladder on the Hi-Lo bed. I did some research, it can be done but the bed needs to be able to support the weight of the water. What usually happens is, my OT put in my application for a Hi-Lo bed to (Enable NSW, Aids and Equipment Program) that is funded by the local government. I then have to trail a bed with a few different mattress and then work out which is more suitable for my needs. The beds they supply have a capacity to hold 100 to 150kg's, a single water bed weights over 200kgs. They do however have beds for obese people that support 300kgs, so if my OT can  justify why I should have that bed, there might be away for me to keep my water bed and keep everyone happy. It's a big ask, where talking about $2,000 bed to a $4,000 we've going to try, We have nothing to loose. I also have trailed a few hoists, one a standing hoist the other a portable hoist. They decided that the portable one was best. Now we have to wait to see Enable will accept the request...

here is a link for Enable: Enable

Monday, March 19, 2012

Friday, March 2, 2012

Good News/Bad News, Flank Pain

Well just to update, I had all my scans and x-ray and saw my NS on Tuesday. A long day but surprisingly I coped a lot better than I thought I would. I had my sister and my brother in-law come with me, they helped lift me on and off of all the various beds. I even had my dear friend pop by (you know who you are - thanks) which was great, she lighten the mood. There was a bit of a wait for all the test results to make it back to my NS in time for my appointment.

The good news is they didn't find any fractures, pinched nerves or narrowing of the spinal canal, no kidney stones. There however was a small speck in my left kidney, nothing to really worry about. Also there has been no significant changes to the tumour and cyst since my last MRI scan back in 2007. Having said that, the radiology report says "atrophy with extensive Syrinx formation" meaning wasting away. So in short, there doesn't seam to be any major changes just wasting, wear and tear of the cord. Which my NS said was obvious and explains my loss in function over the last 5 years, toped off with the long term effects of radiation. Well that's the good know it doesn't sound like good news but it could of been much worse. It's good that the cyst hasn't grown, I suppose what bothers me somewhat, is even when and unfortunately the time will come that it will get worse, they can't do anything about it. I asked him if and when some time in the future would surgery ever be considered at least for the cyst, he pretty much said "NO"

He concluded that he was glad that we didn't go through with any surgery back 11 years ago in 2001 when we first found the cyst. He was adamant that if we had, I wouldn't be here today or worse I'd be a quadriplegic. Because of the location of the cyst it can cause heart, speech, and breathing problems. I asked how likely is it that one day I could wakeup having these problems. His answer was, "it's highly unlikely that it will happen that fast, it will be a very long and slow process as my past history has shown". Not too sure weather I liked that answer, long and slow. It sounds like a lot of pain and suffering to me. I think I'd rather quick and over with, since there isn't anything that can be done.

Anyway that's the tumour and cyst side of things, they did find a collapse of the lower lobe of my left lung and at least 3 liver lesions, 15, 9 and 6mm. Not sure if I should be concerned, my NS didn't seam concerned about it. Doctors are sometimes hard to read. The Liver and Lung isn't his area so I don't think he wanted to say anything, except to see my GP. 

I'm not too worried about the lung thing, probably not surprising with my spinal curvature but it's my left lung lower lobe that's not inflated. Strange because it's my right lung that has the less room and is more squashed in. I'm not having any breathing problems so I'll have to discuss it with my GP weather this is or will be an issue or not. 

On the other hand the liver lesions is another story, wasn't to concerned at first but after doing some research I found out that the liver is under the ribcage on the right side. It's pretty much where my pain is. I'm getting the felling that my ribs are rubbing up against my liver causing the lesions thus causing the pain. I always though it was my lung rubbing up against my rib. Well it's just theory, I'm not going to get ahead of myself, lets see what the GP and the report from my NS has to say. 

The bad news is we didn't find the cause of the pain, which was what NS said that we probably wouldn't, but at least we ruled out what it isn't. In hindsight I wish I would of asked some more questions about the location of the liver. Isn't it funny how you always have questions you wanted to ask and get side tracked then after you leave you remember. Dives me nut's!    

So in conclusion, no significant changes in the spinal cord, cyst and tumour apart from wear and tear. NS puts my pain down to my posture and recommend going to a pain clinic to help manage my pain. In leaving his office I asked if he wanted to see me again, he shook my hand and said "his always happy to see me". I got the feeling and reading in between lines, there's not much point, his a surgeon, he can't operate, he can't help me anyway!

So I'll leave it at that for now and will update once I speak to my GP........

Sunday, February 12, 2012

Flank Pain update

So finely I got around to seeing my NS, it had been almost 5 years since I'd seen him last. Unfortunately I was unable to get the community transport, I had to get a WAT's taxi. Anyway describing the pain to my NS, he thinks its going to be difficult task to pin point where or what the pain could be. Anything from a pinched nerve (which is what I think it is) to kidney stones, disc or a rib fracture. Because of the twists and turns of my spine the radiologist might not be able to find the never root that is causing the pain. He sent me for a Bone Scan, MRI, X-ray and a Kidney Ultrasound. The Bone Scan on the 15th will take about 4 hours, it will be a long trying day.  I'll have the MRI, X-ray and Kidney Ultrasound, all in the one day on the 28th. It will be an early start that morning 7 am, a real challenge. After these tests, on that same day I'll see my NS to get the results, not sure how I'm going to cope physically, I'll be lying down during the tests, so I might be ok.

I kind of get the feeling that now I'm in a WC, they've put me on the shelf or the too hard basket. Reading in-between the lines I think he feels "what's the point of havering surgery if I'm already in a wheelchair", it's not as if I'm going to walk again. But my point is, I don't want to get worse, lose the ability of my right hand and just be able to feed myself, use the computer or scratch my nose. Is that to much to ask for?......well probably, maybe it is. You would think with todays technology they would be able  to at least stop the slow progression. Having said that , I do understand his point of view, if they intervene there's a very high risk of losing that very same thing I'm trying to preserve.

I think that's why I haven't been to see my NS in 5 years, I just didn't want to be reminded of what I could loss and what's ahead. It would be nice to hear him say "we can preserve what you have now, you're not going to get worse!" I'd be happy with that!.....

Well until the 28th...maybe they can deal with my pain....

Wednesday, February 8, 2012

Painful Times

The start of this year - end of last, it's been a very painful time. Since the middle of January my pain has gone up a notch, so much so I can't even get off the toilet. I thought it might be muscle strain, that I keep on straining. On Thursday night, 2nd February I had this pain attack on my right side, around my rib, hip and lower back and my foot was throbbing. I've had this pain on and off for years, my doctors and myself just put it down to my posture and my ribs rubbing together. It was so bad that night, nothing I did or took made it better. I was so close to going to the hospital emergency, I even called my sister to come. But after lying on my right side it began to ease, luckily it did. The pain was such, I just felt like I wanted to take a bottle of pills to get it over with. We decided not to go to Emergency because there would be a long waiting time and I wasn't in so much pain anymore, they probability just send me home anyway. 

So I phoned my GP the next morning, considering I was in such a state I managed to sleep ok, but was really tied. My GP tried to make a home visit but got called away on an emergency so he came on the Saturday. I was feeling a lot better but I still had the pain, nothing like Thursday night but it's still there. We think that it's a pinched never in my lower back, so my GP arranged an appointment this Friday with my NS. My GP mentioned a spinal fusion, not sure weather that can be done on my spine with all the other stuff that's going on inside my spine. 

I almost had the same pain again that night, so before it took a hold I laid on my side and it eased. So I'm managing the pain but still cannot stand on my own, can't feel my right foot and my left leg, being the weaker one it isn't helping any. Since I've taken up the chair my pain has increased. My pelvis is so out wack, sitting makes it so much worse. It feels like my top have of my body is going left and the bottom half is going right and my spine is shrinking or getting shorter. I need to hang upside down like bat I I have to spend most of the day reclining in my chair, finding it hard to sit up for long. I'm trying to cut back on my transfers to avoid the pain.

My other headache is organising transport, my NS is in Newtown near the city about an hour away from where I live. Usually I can get the local community transport for wheelchairs, they are subsidized by the government and the most you pay is 37 dollars. The catch is you need to give them at least a weeks notice, sometimes more especially when its further away. Unfortunately I couldn't get a booking for Friday. So I have to get a Wheelchair Accessible Taxis (WATs) which is fine but it's much more expensive. It's subsidized too but anything up to 60 dollars I get 30 dollars off and I have to pay the rest. So we're looking at $200 and that's if we don't get traffic. What I'm worried about is, it won't probably be a one time thing. If then my NS wants scans and x-ray's and then I'll need to go back to see him that will be another two trips. Back in the better times, like when I was a kid, doctors would book you into hospital for a week and would run all the tests and scans and if needed, be seen by other doctors. I don't think they do that anymore, it would be less tiring on me and would be quicker. I can't sit up for longer than a few hours or the pain comes back. I will put it to him when I see him, it would save me a heap of pain and strain. Will post soon....

Wednesday, February 1, 2012


When you are a young person with round-the-clock care needs, time can be your enemy... Life is a waiting game. Waiting for someone to shower you. Waiting to feel the sunshine on your face. Waiting to see a loved one. This is the harsh reality faced by thousands of young Australians, day in, day out. It's not good enough. 

Press play to watch the video below.