In my experience you never get straight, definitive answers from medical staff, especially when talking about prognoses. I suppose there are so many variables to consider and each individual's tolerance for pain and disability is different. I'm lucky in that I'm resilient and haven't experienced mental health issues (not since my 20s, anyway), because I know those make all the physical stuff a million times harder to cope with.
I never regained function from any of my surgeries, except inasmuch as I could do things because they didn't hurt anymore. When all the knuckles in my righ hand had to be excised and replaced, I was never able to bend it afterwards, so I can't make a fist, but I couldn't anyway due to pain, so no gain, but no loss.
For me, losing the ability to do most manual tasks has felt like a long, slow bereavement and I spent a long time grieving for what I could no longer do. I also continue to lose function, because age, osteoporosis and neuropathy caused by cervical spine arthritis are all conspiring to make me weaker, less mobile and more prone to dropping things. But I have found I can cope with a lot more when I'm not in pain. The last few years I have been on injections of adalimumab for my RA, and it's made such a huge difference. I no longer need painkillers or anti-inflammatories, which I must a swallowed a million of over the years. But I have to rely on my husband to do a lot of things for me, and I expect I will become more dependent as the years go by. Which is a problem, as he has dementia, so I too will need to source practical support for everyday tasks, as we have no children to lean on.
I wish you well in tracking down the help you need - I don't know how the support system works in the US. In the UK care is means tested, so I would have to pay for any help as I'm still working, and probably will have to pay when I retire as well, as I will have a private pension. Being disabled is not only phyically and mentally challenging, it's also really hard on the wallet.
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Re: TL;DR
Date: 2019-11-14 05:05 pm (UTC)In my experience you never get straight, definitive answers from medical staff, especially when talking about prognoses. I suppose there are so many variables to consider and each individual's tolerance for pain and disability is different. I'm lucky in that I'm resilient and haven't experienced mental health issues (not since my 20s, anyway), because I know those make all the physical stuff a million times harder to cope with. I never regained function from any of my surgeries, except inasmuch as I could do things because they didn't hurt anymore. When all the knuckles in my righ hand had to be excised and replaced, I was never able to bend it afterwards, so I can't make a fist, but I couldn't anyway due to pain, so no gain, but no loss. For me, losing the ability to do most manual tasks has felt like a long, slow bereavement and I spent a long time grieving for what I could no longer do. I also continue to lose function, because age, osteoporosis and neuropathy caused by cervical spine arthritis are all conspiring to make me weaker, less mobile and more prone to dropping things. But I have found I can cope with a lot more when I'm not in pain. The last few years I have been on injections of adalimumab for my RA, and it's made such a huge difference. I no longer need painkillers or anti-inflammatories, which I must a swallowed a million of over the years. But I have to rely on my husband to do a lot of things for me, and I expect I will become more dependent as the years go by. Which is a problem, as he has dementia, so I too will need to source practical support for everyday tasks, as we have no children to lean on. I wish you well in tracking down the help you need - I don't know how the support system works in the US. In the UK care is means tested, so I would have to pay for any help as I'm still working, and probably will have to pay when I retire as well, as I will have a private pension. Being disabled is not only phyically and mentally challenging, it's also really hard on the wallet.