Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Rick  I am glad that you are doing so good. Atleast you only had one surgery I am going on my 3rd and right at the point of enterance of the surgeon I have a disc that need repaired my NS can not do that but he says that he is sure that is also causing alot of pain, as well as my RA I just don't know what more I can do for my SSDI to get approved.  I also suffer from PTSD I have a couple different issues in addition to having TSC. I admire your diet I do believe in that as well. I think you have found what works for you. Are you able to work any at this time or would that be too much for you still?? I have been told that with SSDI you can stilll work up to a certain amount of money per month. I would love to get back to work someday, but the way my last year has been I just don't see that happening for me. After my first surgery I was off work for 4 months than returned to only work another 5 months before my next surgery. My NS has never suggested PT. I don't have any trouble with walking until my cord is tethered and then my legs get so weak that I can not walk for more than 10 steps. I guess that would be good for keeping up your strength. My NS has told me that they have no idea what to do to keep from tethering. I continue to do all that I can I am like you I try not to stay in bed but I do have to lie down in between what I have to get done. I do alittle then rest and then do alittle and rest. I think my life will be like this, I don't know where it is going to change. And without any money coming in I don't know how I will keep my house, food on the table and as it is now I can not even continue on the meds I should be on or even get to the doctors like I should. Well Thank you so much for being here for me with your advice and your story. I will try to drink more water that I don't do as much as I should but as for my diet I do eat healthy. I will keep you posted how I am doing and please let me know if you can think of anything else that may help me to get my SSDI approved.  Michele Thank you again, I appreciate you and what you have been thru ________________________________ To: tetheredspinalcord Sent: Sunday, November 13, 2011 5:27 PM Subject: Re: SSDI  Hi Michele, Michele Casey said the following on 11/12/2011 11:01 PM: > Thank you Rick I am 41 now and like I said my 3rd surgery on my spine in 3 years will be in 4 days, I am scared to death I have 2 girls that need me, but I can't imagine letting my symptoms get worse. Have you done fine with only having 1 surgery???? I am doing great! I think there are several reasons. I keep very active and do not lay around all day. I do PT 2 X week in summer and 3 X week when it gets too cold and icy outside. Prob 3 hrs week TV max. I do not eat processed foods, sugar or any grains, I eat mostly raw vegetables (get a juicer), fresh fruit, meat, farm-fresh eggs (lightly fried in cold-pressed organic coconut oil), and raw nuts except peanuts. This resulted in a natural 50 pound weight loss and now I am at my recommended weight level. I take several supplements & vitamins, all high quality and none of them are artificially made. I attribute this to a great immune system and would never poison myself with something like a flu shot. I drink 2-3 liters home filtered water a day. Now my only presc are tramadol for mild muscle aches, ditropan for bladder, and klonopin for occasional spasms. I have a very comfortable sitting chair for computer & reading. Do I need a disclaimer here? After 14 years of trial & error, this is what works for me and may or may not work for anyone else. > I have read that one person has had 10 surgeries WOW I can't believe the stress with that. Now SSDI wants to wait to decide until they get hospital records, that will only tell them what was done not if I have any complications that takes some time, I don't know how long they want to put this off. I also have RA so this is not my only problem so who knows what they are thinking, the more time they waste the more money they spend on my back pay which will be back dated 1 year. They act like this is a life I want to have I am young I want to work and I would if I could I would. I am glad you had an easy time I sure hope I get some good news after this surgery. Just the fact of 3 spine surgeries is > too much to think about let alone what is SSA going to do. what is RA? > I did call for government help her in colorado and I was told whatever money or food stamps I am helped with I have to pay back to them. That just does not make sense to me. I have never heard of such a regulation or rule. The only exception I can think of is if there was a lawsuit and you were awarded monetary damages for an accident or negligence. > Well one surgery on medicaid I will probably owe SSA after that............ SO how are they going to make you pay? Last I heard you cant get blood out of a rock. > All of your information has been a huge help to me so please keep letting me know what you think and how you have done after one surgery and do you have any problems now from any complications. Thank you so much for your time and compassion > > Michele > You're welcome, anything I can do let me know. 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Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Michele Casey said the following on 11/14/2011 3:16 PM: > Are you able to work any at this time or would that be too much for you still?? I could work IF I could find a job that - pays more than disability with full health benefits - I did not have to stand - I did not have to lift much & - they would hire a 57 yr old disabled man with no formal experience in his newly acquired vocational rehab capabilities (hey maybe a government job?) Thought about it... > I have been told that with SSDI you can stilll work up to a certain amount of money per month. yes, dont rem what it is now > My NS has never suggested PT. I don't have any trouble with walking until my cord is tethered and then my legs get so weak that I can not walk for more than 10 steps. Ask your NS if PT (including stretching) could possibly keep the lower end of your spinal cord from always staying in the same place, giving it the opportunity to re-attach or become tethered? I used to do Cranial-Sacral ?? therapy where the PT could actually pull my spinal cord up (so she says), I couldnt tell but it felt good. She was doing this to release my hip-sacral joint, and she did but it took 3 months 3 x week. Too bad she went to work somewhere else or I would have her work on some tight muscles. Anyway I brought this up cause she said she could keep me from retethering by regularly keeping my spinal cord moving. > I guess that would be good for keeping up your strength. Yes, also since I lost a lot of fat, I also lost a bit of muscle, so we are rebuilding those muscles again. > I will keep you posted how I am doing and please let me know if you can think of anything else that may help me to get my SSDI approved. > Ok I will, best wishes and good luck. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Hello Rick  Thank you for all of your help. I will be in touch  Michele ________________________________ To: tetheredspinalcord Sent: Monday, November 14, 2011 11:14 PM Subject: Re: SSDI  Michele Casey said the following on 11/14/2011 3:16 PM: > Are you able to work any at this time or would that be too much for you still?? I could work IF I could find a job that - pays more than disability with full health benefits - I did not have to stand - I did not have to lift much & - they would hire a 57 yr old disabled man with no formal experience in his newly acquired vocational rehab capabilities (hey maybe a government job?) Thought about it... > I have been told that with SSDI you can stilll work up to a certain amount of money per month. yes, dont rem what it is now > My NS has never suggested PT. I don't have any trouble with walking until my cord is tethered and then my legs get so weak that I can not walk for more than 10 steps. Ask your NS if PT (including stretching) could possibly keep the lower end of your spinal cord from always staying in the same place, giving it the opportunity to re-attach or become tethered? I used to do Cranial-Sacral ?? therapy where the PT could actually pull my spinal cord up (so she says), I couldnt tell but it felt good. She was doing this to release my hip-sacral joint, and she did but it took 3 months 3 x week. Too bad she went to work somewhere else or I would have her work on some tight muscles. Anyway I brought this up cause she said she could keep me from retethering by regularly keeping my spinal cord moving. > I guess that would be good for keeping up your strength. Yes, also since I lost a lot of fat, I also lost a bit of muscle, so we are rebuilding those muscles again. > I will keep you posted how I am doing and please let me know if you can think of anything else that may help me to get my SSDI approved. > Ok I will, best wishes and good luck. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Hello Rick  I am sorry but I deleted your information for your facebook and e-mail address please send those back to me I have my surgery tomomorrow and I would like to keep in touch with you, I am sorry  Michele ________________________________ To: tetheredspinalcord Sent: Monday, November 14, 2011 11:14 PM Subject: Re: SSDI  Michele Casey said the following on 11/14/2011 3:16 PM: > Are you able to work any at this time or would that be too much for you still?? I could work IF I could find a job that - pays more than disability with full health benefits - I did not have to stand - I did not have to lift much & - they would hire a 57 yr old disabled man with no formal experience in his newly acquired vocational rehab capabilities (hey maybe a government job?) Thought about it... > I have been told that with SSDI you can stilll work up to a certain amount of money per month. yes, dont rem what it is now > My NS has never suggested PT. I don't have any trouble with walking until my cord is tethered and then my legs get so weak that I can not walk for more than 10 steps. Ask your NS if PT (including stretching) could possibly keep the lower end of your spinal cord from always staying in the same place, giving it the opportunity to re-attach or become tethered? I used to do Cranial-Sacral ?? therapy where the PT could actually pull my spinal cord up (so she says), I couldnt tell but it felt good. She was doing this to release my hip-sacral joint, and she did but it took 3 months 3 x week. Too bad she went to work somewhere else or I would have her work on some tight muscles. Anyway I brought this up cause she said she could keep me from retethering by regularly keeping my spinal cord moving. > I guess that would be good for keeping up your strength. Yes, also since I lost a lot of fat, I also lost a bit of muscle, so we are rebuilding those muscles again. > I will keep you posted how I am doing and please let me know if you can think of anything else that may help me to get my SSDI approved. > Ok I will, best wishes and good luck. Rick Quote Link to comment Share on other sites More sharing options...
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