Hi there to all...
This is a long overdue update of my condition...the last being posted in 2004..
Since the time of my last posting I have had a couple of fairly serious lots of surgery. I have had to fight for over 7 years to get the last lot done, which was a breast reduction, to help with my back problems and of course, OT. The results have been remarkable! ( unfortunately, no difference to my OT though! ) I have lost over this period of time, around 30 kilos in weight. Just before my surgery last July, I started to walk to get a little fitter for surgery. I added my own version of situps and went up and down my outside steps ( 15 ) about 10 times a day as well. whilst I did get fitter and in much better shape for surgery, each time I did the stairs, I had to sit for an hour to let the tremors calm down a bit. It is the one thing I have found with the exercise that I do, I do have to sit for a while, but as long as I am on the move, I can do it!
My surgery went so well and I am now walking with the aid of two hiking poles...( I used a bamboo rod and an umbrella to walk with before 5 weeks ago!) These things are brilliant! I walk 2.6 miles, come home have a drink of water then go for a bike ride of 8 kms. By this time I REALLY need to sit down for an hour before I am able to cope with standing in the shower and changing for the day! I usually sit at the computer whilst eating breakfast, so do two things at a time! The side advantage of using these hiking poles, is that I lost 5 INCHES! YES ..5 INCHES FROM MY BUST LINE...MOSTLY AROUND MY BACK AND HALLELUJAH LADIES! FROM AROUND THE TOPS OF MY ARMS!!!!! Wow! I am now fitter than I have been in years! BUT..... the darned tremors do not go away!!!!! I still have to use my crutches, ( a huge irony in itself don't you think? ) even though I still try to see if I am improved in any way shape or form, they DO NOT go away!
I was in the bank and in a queue and after 5 minutes was frantically looking round for somehwere to lean against or sit down without losing my place. Fortunately a teller saw that I was in trouble and came to my aid by doing my business and so getting me out of there fast, be it ever so wobbly. Then we went to the supermarket and again ended up in a queue. Again I was in strife but got to the edge of the counter so was able to lean against it once again. Tiring stuff this trying to keep upright and on an even keel! The library was next on the list and the one I was most dreading! I am known here so I can get a seat by the books I need to look at and the staff are very good at taking my books to the car if I overload a bit! But there are days when one cannot find a seat for love nor money! I was lucky today!
I am going to see my specialist sometime this year to check in with him and tell him of my adventures, show him the new me, and tell him that nothing has changed! ( I have one more lot of surgery to get through first ) At least I know what I am dealing with in so much as this is my life, but one can work around the problem once one knows what the problem is! As I have said before, weight does not bring any bearing on this problem, but I am still convinced that back problems are the trigger...( for me anyhow! ) I am going to be have a chat about this with my doc! Should be interesting!
Now that I am back, I shall be visiting more regularly. I lost interest in so many things whilst fighting and such, but I am not going to let "them" beat me! If I do not agree with what a doctor is telling me I tend to argue back and say that I disagree if my body is telling me otherwise! After all, it is OUR body and we know it more than anyone else right?????
Take care all you people out there and don't let the medical proffession fob you off when you know that something is wrong! Keep fighting and always go to the top! It works wonders dealing with the people who control the puppets beneath them! After all this time, I am still asked what is wrong with me..in hospitals and then they just don't want to be bothered getting into something they don't understand. My 'sticks' I call my 'fashion statements' as I get tired of trying to explain the condition. It is tedious now and people so often just do not want to know. Keep fighting and keep in touch!
RED
Update from 2004
Moderator: gloria
-
stella
re back problems and ot
HI
Just wanted to say i just had a back scan done and
was told i have a lot of damage done in my spine.
Was wondering how many of us have some serious back problems.
Just wanted to say i just had a back scan done and
was told i have a lot of damage done in my spine.
Was wondering how many of us have some serious back problems.
re: Back problems
Hi again
When I first came here back in 2003, there were a lot of postings which seemed to have people who in fact did have back problems. I would dearly love to know just how many people do have them as I am still adamant that my OT was at least brought to a head , if not started my OT, by the last 'incident' I had with my back. I am arguing with my neurosurgeon about this ( nicely disagreeing of course!
) and if I had figures to back me up, at least I would have a valid argument for my fight for compensation as we have to in NZ. I have been unable to work since April 2000 because of my condition and then because of the many drugs that I had thrown at me to 'keep me happy'. My memory is no good, and my concentration levels can be zero or short lived. I have now settled with one drug only and also take only half the recommended dose. This is either keeping me as I am and not doing anymore damage, mentally or physically, so have adjusted it to suit me. If I had taken the whole amount prescribed, I would have been in a foggy tunnel and not been driving and also, one side effect ( For me! ) was that I became EXTREMELY aggressive. Not physically, but half an extra tab could make me really grumpy and aggressive verbally. Too many drugs are thrown at us to shut us up because the system world wide today is all about money. Thankfully there are a few good Docs who pursue this condition and I have one of them. I am going back this year and will continue arguing my case as I wrote in an earlier posting.
I would like to see how many of you do have back problem as well.
Take care all
RED
When I first came here back in 2003, there were a lot of postings which seemed to have people who in fact did have back problems. I would dearly love to know just how many people do have them as I am still adamant that my OT was at least brought to a head , if not started my OT, by the last 'incident' I had with my back. I am arguing with my neurosurgeon about this ( nicely disagreeing of course!
) and if I had figures to back me up, at least I would have a valid argument for my fight for compensation as we have to in NZ. I have been unable to work since April 2000 because of my condition and then because of the many drugs that I had thrown at me to 'keep me happy'. My memory is no good, and my concentration levels can be zero or short lived. I have now settled with one drug only and also take only half the recommended dose. This is either keeping me as I am and not doing anymore damage, mentally or physically, so have adjusted it to suit me. If I had taken the whole amount prescribed, I would have been in a foggy tunnel and not been driving and also, one side effect ( For me! ) was that I became EXTREMELY aggressive. Not physically, but half an extra tab could make me really grumpy and aggressive verbally. Too many drugs are thrown at us to shut us up because the system world wide today is all about money. Thankfully there are a few good Docs who pursue this condition and I have one of them. I am going back this year and will continue arguing my case as I wrote in an earlier posting.I would like to see how many of you do have back problem as well.
Take care all
RED