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.

Not A Good Start Pt 2

Well what can I say, I was hoping that this year would not necessarily be a better year, but at least be the same and not worse. Not so! not only am I dealing with negative people around me, I'm reaching that line. The line I didn't want to reach or was hoping not to cross.

So your probably wondering what line, well I call it "the line of no return". Now that I've been in a chair for little over a year, I still was able to transfer in and out myself. But as 2011 came to an end this was becoming an issue. I had been in pain on and off all year but this month it has gotten worse. The pain especially when standing is just too much, I can't left myself up. This is the line I didn't want to cross, even though I probably knew was coming. Pain medication helps but not enough for me to stand and transfer without a lot of help. So I can her you say what's the big deal. Well the big deal is, I can no longer use the bathroom myself, get into the shower and even pull up my dacks (aussie slang for pants) this makes it difficult for me and my elderly parents.   

Not only am I losing my dignity but also the little bit of independence and of self worth. It just frustrates me to no end that being disabled takes so much away from who you really are or could be. But even getting through and over this part of it, that would be OK. It's the fact that it will still continue to get worse with me, there's No Stop sign or Red Light. My goal posts just keep changing, just when I might be getting used to things as they are. Crossing this line also means a whole new set of problems, not only for me but for the people around me. For instants, getting a catheter, so what's the big deal, it will make things easier, right? Well yes it will, but now I have to watch for reoccurring infections, it needs to be changed every 4 weeks, it can get blocked, there's a risk of kidney stones, rick of badder or kidney cancer, bleeding. It's also something that needs to be maintained on a regular basis. You spend so much of your free time just dealing with these every day things that people take for granted. Half the day is gone before you need to do it all over again at night and then the next day. I miss those day's when it only took 30 minutes to shower, dress and get going. Another problem will be, not bearing weight on my legs. Not only am I noticing more stiffness and soreness but I will lose muscle mass but more importantly, bone strength. So as you can see crossing this line will be a major change and disadvantage to my health but also to my being. I'm sure I will get through it until my goal posts change again but in the mean time I feel like my spirit is going though a beating. Keeping it together for me and for the people around me is difficult. So, for now I feel like I'm treading water, maybe if I can work out the pain thing I might keep it at bay for a bit longer.  keep you posted.