Friday, March 30, 2012
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 Health.nsw.gov
Monday, March 19, 2012
Friday, March 2, 2012
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 news...lol...I 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........