hi all those of you who know my story about beingvin rehab those who don't please read previous post before comments well the story of a physio going behind your back and telling a phycologist that you sometimes ask the same question twice and I know many people who do that and repeat themselves many times then the phsycologist comes to see you in which I told her I am pyscological OK and she says she can see that then to have the audacity to want to speak to my sister on the phone alone re my condition Probably wanting to ask many questions I have dealt with these kind of people when both my mother and father were alive and wasn't happy with the outcomes they may have university degrees but they are certainly not educated in human care now you may understand why I wantvto go home and deal with private physios
Ra sufferer: hi all those of you who know my story... - NRAS
Ra sufferer
Hi rocky, sometimes you have to work along with staff even if it does seem a bit ridiculous to you . It means that something else is ticked off the list and you can concentrate on your rehab and it's another step towards home . You haven't told us how that is going , have you been able to stand and take a step yet . Wishing you all the best .
No I haven't been able to stand they have been putting me on a tilt table to try and straighten my legs they put these tight straps on they press on my knees it hurts but I refuse to take pain kilkers
Oh rocky it sounds very difficult and it will be sore , the only way i can relate to it is when i had major op on my shoulder it took several months of painful physio to get the movement back and nearly a year before i was pain free but it was the best thing I ever did . Set yourself a goal and keep your eye on that . Best wishes.
I just can not bare hospitals sharing toilets sometime having to call the nurse in the middle of the night to go to the toilet sharing a toilet between 8 patients at home I am independent free to come and go as I please yes getting my mobility back would be good but its going to take a long time and I can't handle being away from home any longer not that I wish to be in wheelchair but there are many people who are and cope I have just had enough and sometimes just want to cry my feelings hurt so much
I don't know how often your family can make the long journey to see you but is it possible for them to come up and you can all meet with the rehab staff and discuss realistically what to expect from your rehab . Is obviously causing you pain being away from them and your home .
I am having a family meeting tommorow I just hope they don't twist my words to their direction my family are just travelling to far
Have a good talk with your family before the meeting, and make notes about what you want to say , have a plan . Is there a patient advocate that can also give advice? Be positive x
Wow, I really feel for you!
If your type of RA happens to be a rather nasty, aggressive, erosive one and happens to be the type that won't respond to alternative treatment and you won't even try traditional meds then that puts you between a rock and a hard place.
I'm sure you're aware but just as traditional meds don't work for everyone, alternative treatments don't work for everyone. I certainly hope for you it does because that sounds like your only option.
I for one have a very aggressive, erosive type of RA (bone erosions were evident at my first Rheumy appointment) but I started on traditional meds and am now in remission and cycling hours all over the mountains.
It took almost two years to reach this point but I don't even need to take an aspirin and I have no side effects from the meds.
What's stopping you from going home and using the private pyhsio?
As a side note, I don't think one of us would deny that when we are at our worst as far as a flare or pain goes that it effects us psychologically and would make any doctor or husband or sister worry a bit about our mental state and push them to try to find help. Often they really are just trying to help even if you don't see it that way.
Sometimes we just have to let go of all the anger and let them help. It's awfully hard to do but if you can do it and stop all the negative noises whirling around your head and get on with the hard work of healing then you're my hero.
Wishing you the best.
So sorry you're still having a bad time. Have they got you out of bed rest yet? I would take the pain killers if offered, I know it's difficult to think that you are becoming reliant on them, but I decided that needs must, and they help me have a more productive day. Hope you have a better day today. xo
They only get me out of bed when I go to physio or xrays etc
That's something to discuss at the meeting tomorrow
I agree with weathervane, that is definitely something to discuss at the meeting tomorrow and making a list of talking points is always a good idea. I keep a running list of issues and things I want to mention to my docs out of habit because I will surely forget them when I'm in front of the doctor.
You've been in my thoughts and prayers and will continue to be. Pain is such a monster, and everyone here can relate to pain so bad that it's all consuming and completely taxing. That's bad enough as it is without having your feelings hurt on top of it all. I'm so sorry you're in this situation. Keep us updated. Even though we can't physically drive to be with you, we are here.
Best ~
S
I understand your frustration, and all I can say is that:
"I'm sending you a big hug from Western Canada!!"
