Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 Loriann, If you're feeling those butt pains after strenuous PT/strenuous wheeling, then please take it easy. I use my manual chair outside of the house (we don't have a van to transport my powerchair), and earlier, it definately would make me sore when I overdid it. Wheeling yourself around can be pretty strenuous on your back, so please don't overdo things. How have your home modifications been going? Have you been in contact with your local Center for Independent Living? They can often offer resources that you may not be aware of, or may not have even thought about. Are you guys doing alright with all of the life changes you're going through right now? > > Hi , > > I think you are being modest about all that you do! I have no social > life either. I'm not concerned about that at least since lately I'm > starting to prefer pulling the covers over my head to talking to people. > > Good luck getting your home services re-approved. I have aide service > for a couple of hours a day, and it's pretty useful, although I think > my family finds it a bit intrusive. Oh well. > > I suspect some time in the future I will want to get a power chair. I > don't think my shoulders will hold out very long with my manual chair. > > I'm so glad to hear your butt pain mostly went away. Maybe there is > hope for me yet. Mine started about a month ago when I had a couple > of very strenuous PT days of trying to wheel my wheelchair to the bus > stop in dry weather and then snow, while at the same time I was > experiencing a couple of days of diarrhea (sorry to be so graphic). > The butt pain has been with me ever since, and getting worse instead > of better. I only sleep part of the night on my back. > > PT's going okay. The home PT may end soon, and I'll have to find an > outpatient place. > > Thanks for all the info, . It's always nice to hear from you, > > loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Hi , The thing with the butt pain is that it doesn't go away even if I take it easy. We aren't doing much in the way of home modifications. We are more focused on trying to find a ranch house to move to. No luck yet in our price range, though. Yes, I've been in contact with one branch of our Center for Independent Living. They can't do much for me since I don't have Medicaid. I'm doing alright with my life changes. Am looking forward to when winter is over, though. Thanks, as always, for your concern about my situation. Wishing you a good day, loriann > > Loriann, > If you're feeling those butt pains after strenuous PT/strenuous > wheeling, then please take it easy. I use my manual chair outside of > the house (we don't have a van to transport my powerchair), and > earlier, it definately would make me sore when I overdid it. > Wheeling yourself around can be pretty strenuous on your back, so > please don't overdo things. > How have your home modifications been going? Have you been in > contact with your local Center for Independent Living? They can > often offer resources that you may not be aware of, or may not have > even thought about. Are you guys doing alright with all of the life > changes you're going through right now? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Loriann, They can't do much because you don't have medicaid??? What a load of garbage. They're supposed to represent ALL disabled people and giving ideas, info, and resources to EVERYONE who is trying to live independently - not just people who qualify for medicaid. Sorry your CIL is so crummy! Mine here is fantastic. Good luck in finding a ranch home. I've forgotten - were you working before your revision? Have you considered applying for SSDI? I agree that winter is a pain in the rear with a wheelchair. We've had over 60 inches of snow here in northern Illinois this winter, so I've been stuck indoors for ages. I hate going outside and then getting the whole house messy from the wheels, so I mostly stay in. Spring will be here soon though! When do you see the doctor next? Is there any talk of additional surgeries? > > > > Loriann, > > If you're feeling those butt pains after strenuous PT/strenuous > > wheeling, then please take it easy. I use my manual chair outside of > > the house (we don't have a van to transport my powerchair), and > > earlier, it definately would make me sore when I overdid it. > > Wheeling yourself around can be pretty strenuous on your back, so > > please don't overdo things. > > How have your home modifications been going? Have you been in > > contact with your local Center for Independent Living? They can > > often offer resources that you may not be aware of, or may not have > > even thought about. Are you guys doing alright with all of the life > > changes you're going through right now? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Hi, Loriann -- You wrote: > I have no social life either. I'm not concerned about that at least since lately I'm > starting to prefer pulling the covers over my head to talking to people. I beg to differ! As reclusive as all of us feel sometimes, I am so thankful for the Internet. Groups like this one give us a social life and enjoyable, empathic friends in manageable doses, when WE feel like socializing. I liked what you once wrote about someday having " brick and mortar friends " once more, but I'm starting to think that we may be the last generation to make such distinctions -- to regard emailing, posting, texting, phone-photo-sharing, etc., as something other than a " real " social life. > Good luck getting your home services re-approved. I have aide service > for a couple of hours a day, and it's pretty useful, although I think > my family finds it a bit intrusive. Oh well. Well, you could also consider this a kind of " forced social life " ! When I was lucky enough to have state-financed home health aides, I personally found this more than a bit intrusive. Maybe it was the personalities involved, or the frustration of women who did this kind of work. Some did not want to do what I needed, e.g., housecleaning, laundry, etc., after working in higher-status, quasi-medical jobs elsewhere. I could commiserate, but I did not know how to handle this. During that particular post-op period, I was not as clever at delegating or making something helpful out of what I was " handed. " Assuming you are satisfied with the services you are getting, I bet there are group members who would welcome any tips you may have on working optimally with a home aide. [My late friend, a retired professional social worker whom I'll call " , " seemed to do better with aides than I did, despite having a couple of aides who could have qualified for the " Colorful Character of the Decade " award. was pretty laid back about their quirks -- to her it was an interesting and amusing anecdote that one of her helpers, while supposedly on the job, turned out to be smoking pot with one of 's (grown) children. As I recall, didn't call it quits with that particular aide until the aide suddenly vanished forever, along with the household's petty cash fund!] Loriann, you also wrote: > > I'm so glad to hear your butt pain mostly went away. Maybe there is > hope for me yet. Mine started about a month ago I'm so sorry to hear this, from you as well and other post-revision friends. I've had that pain-in-the-posterior experience myself, and it can be horribly trying, to say the least. But I just have to ask you a quasi-ignorant question: Could the pain mean you have some wide-awake neurons in the relevant area of your spinal cord? After all the time, effort, and determination you've invested in your rehab, could you possibly be experiencing some nerve regeneration? In terms of the prognosis for future sensorimotor improvement, could your pain possibly be a GOOD sign??? Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Hi, Loriann -- I have to agree with : What a bunch of hooey! Since when did you have to have Medicaid to get help from one of those " Access " centers? Give me a break . . . I thought it was hard navigating the network of services, organizations, and government agencies here in Chicago, but Rochester sounds at least as challenging. Plus I want to know who, if anyone, is in charge of ensuring that disabled people can get down a sidewalk without breaking their necks? I walk so many places, if you could call it " walking " with my little cart on long stretches of glare ice. I can't think it's any better in a chair. Sorry to get on this off-topic subject, but this has really been getting on my nerves. I keep thinking about writing an Op-Ed, but whom to complain to? It's obviously up to individual store owners, home owners, et al. whether to get the salt out in a timely fashion, and so many just don't. Don't they have awkward little kids or arthritic grandparents? Is this an issue on which maybe (gulp) government could usefully step in? Maybe I should contact my alderman .. . . not. It is not one iota better at the big commercial shopping malls. As long as the parking lots are clear, they're happy. I mean, what kind of crazy person does not go everywhere in a car these days? Boy am I weary of clambering over huge mounds of snow everywhere. I can't believe how many winters I have been doing this, including those winters I was a pre-revision little Hunchback of Notre Dame attracting horrified stares with my walker . . . I know, no politics or religion at Feisty. (What kind of uptight list manager made up THAT repressive rule?)(Oh, that's right -- I did.) Sorry, your post just brought back all my frustrations at how hard it is to get anything or go anywhere when you are sidelined by a major medical disaster. Anyway, it's been nice knowing you all, and now I am off to some delightfully subtropical place with no snow whatsoever and lots of big, juicy mangoes. Best, > > > > Loriann, > > If you're feeling those butt pains after strenuous PT/strenuous > > wheeling, then please take it easy. I use my manual chair outside of > > the house (we don't have a van to transport my powerchair), and > > earlier, it definately would make me sore when I overdid it. > > Wheeling yourself around can be pretty strenuous on your back, so > > please don't overdo things. > > How have your home modifications been going? Have you been in > > contact with your local Center for Independent Living? They can > > often offer resources that you may not be aware of, or may not have > > even thought about. Are you guys doing alright with all of the life > > changes you're going through right now? > > > > > Quote Link to comment Share on other sites More sharing options...
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