Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 my family thinks it's crazy that I want a wheel chair, but I find I can't keep up with anyone, and I can't walk for very long, it's so hard to explain to them how I feel, the more I use my legs, the weaker they become and it's hard to explain that weakness feeling. Marla, one way to explain the fatigue in your muscles to your family is that with NS-- the toxins build up in your body, and your body can't clear them out like it would if you were healthy. The other part is that the oxygenation can't get past the granulomas-- it can't break thru that knot that is muscle. This was one of the biggest issues I had when I went for physical therapy last summer. I'd be doing great while at the gym-- but it took me 3 days longer to recover, and I'd be in 2 days later-- so I didn't have the stamina to handle the session. I didn't understand it-- so after asking the PT, and not having him give me an answer, I took the question to my chiropractor. The way she explained it is that we have to have oxygen to make our muscles work-- our bodies hang on to all the O2 we get-- and use it to protect our vital organs-- so that doesn't leave any to heal the muscles after exercise. Add the fact that any exercise or muscle use tears (rips) muscle, and in your hubby or son-- they're better in 24-48 hrs. Normal body systems. We already have those knots, and our blood stream already is full of cytokines carrying inflammation in the blood cells, and we're deficiant in the stuff it takes to heal-- and since you've now injured those muscles== and our bodies celebrate and send more cytokines in the way of inflammation to heal and then it doesn't get the signal to clear out all that stuff-- it just keeps building cell layer on cell layer--and -- wahoo-- more granulomas! This problem is not one of deconditioning--- or at least deconditioning is not the PRIMARY problem-- it is part of the progression of the sarcoidosis cycle. One thing that has helped me and i know you know this is that I do take a lot of Milk Thistle to keep my liver as happy as it can be-- so that it can clear as much of the toxins as possible, and also to make sure that I stay as hydrated -- I like to drink Propel- it has the electrolytes that we need-- and take the MSM both before and immediately after doing any exercise-- (this even means going to the grocery store--so don't think I'm saying use the treadmill only) I'm referring to the normal Activities of Daily Living exercise, vacumming, shopping, picking up the mail, etc. On to the wheelchair issue-- I want to say smack those guys-- but I won't. What I will say is that you need to talk to your MD. He can qualify you for a chair-- and then Medicare will help pay for it. I don't know what it takes to qualify-- but at least you can try to get it covered. I know it's such a challenge to make these choices-- but if it keeps you more mobile-- than that would be a good thing. Have you considered the riding mowers-- I think that's going to be my choice-- (kidding.) Love to you, Tracie NS Co-owner/moderatorWho's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 I got lucky and got my wheelchair off the Freecycle website. There was someone ahead of me but it was too small for that persons mother in law so they emailed me. I have only taken it out once so far but it sure came in handy last week when I had chemo & I think I broke that bone in my foot AGAIN.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Tracie, Thank You, that makes complete sense, my doctor told me that I have the granulomas in the brain and spinal cord, and they are blocking the signal to the legs, hands etc. so I probably have both things going on! I think I need to put more thought into this. So did you find PT helpful, or just made things worse? I'm thinking I will have to give up Speech and OT so I can have that money for the drugs, I'm not sure they are really helping me anyway! and I if I get on a medication that will slow this down I won't need speech and OT. I had a nice chat with Becky yesterday, I am so glad I got on, first I said I would be there, then side track(what a surprise) and doing laundry, to come back and find she went there and I wasn't there, so I'm glad she tried it again! I hope you have a good day! Marla my family thinks it's crazy that I want a wheel chair, but I find I can't keep up with anyone, and I can't walk for very long, it's so hard to explain to them how I feel, the more I use my legs, the weaker they become and it's hard to explain that weakness feeling. Marla, one way to explain the fatigue in your muscles to your family is that with NS-- the toxins build up in your body, and your body can't clear them out like it would if you were healthy. The other part is that the oxygenation can't get past the granulomas-- it can't break thru that knot that is muscle. This was one of the biggest issues I had when I went for physical therapy last summer. I'd be doing great while at the gym-- but it took me 3 days longer to recover, and I'd be in 2 days later-- so I didn't have the stamina to handle the session. I didn't understand it-- so after asking the PT, and not having him give me an answer, I took the question to my chiropractor. The way she explained it is that we have to have oxygen to make our muscles work-- our bodies hang on to all the O2 we get-- and use it to protect our vital organs-- so that doesn't leave any to heal the muscles after exercise. Add the fact that any exercise or muscle use tears (rips) muscle, and in your hubby or son-- they're better in 24-48 hrs. Normal body systems. We already have those knots, and our blood stream already is full of cytokines carrying inflammation in the blood cells, and we're deficiant in the stuff it takes to heal-- and since you've now injured those muscles== and our bodies celebrate and send more cytokines in the way of inflammation to heal and then it doesn't get the signal to clear out all that stuff-- it just keeps building cell layer on cell layer--and -- wahoo-- more granulomas! This problem is not one of deconditioning--- or at least deconditioning is not the PRIMARY problem-- it is part of the progression of the sarcoidosis cycle. One thing that has helped me and i know you know this is that I do take a lot of Milk Thistle to keep my liver as happy as it can be-- so that it can clear as much of the toxins as possible, and also to make sure that I stay as hydrated -- I like to drink Propel- it has the electrolytes that we need-- and take the MSM both before and immediately after doing any exercise-- (this even means going to the grocery store--so don't think I'm saying use the treadmill only) I'm referring to the normal Activities of Daily Living exercise, vacumming, shopping, picking up the mail, etc. On to the wheelchair issue-- I want to say smack those guys-- but I won't. What I will say is that you need to talk to your MD. He can qualify you for a chair-- and then Medicare will help pay for it. I don't know what it takes to qualify-- but at least you can try to get it covered. I know it's such a challenge to make these choices-- but if it keeps you more mobile-- than that would be a good thing. Have you considered the riding mowers-- I think that's going to be my choice-- (kidding.) Love to you, Tracie NS Co-owner/moderator Who's never won? Biggest Grammy Award surprises of all time on AOL Music. -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I am not saying that PT did not help, it did give me back some of the flexibilty in my leg muscles, which makes it so that I don't feel like I'll fall over quite as easily. Because of the blocked signals, the lack of oxygen to the extremities-- we just have to learn to pace ourself and not expect to go about even PT as if we were one of the "run of the mill" patients. The biggest challenge was that the PT's have learned that when someone has balance issues-- Ie. a stroke, MS, or such-- that they use "X" protocol. If you've had a blown out knee-- you use "Y" protocol. Well that works well for those problems-- but they too don't know crap about sarc-- and that was tough on me-- as I had to go back and tell them what I'd learned-- and once again-- the Professionals ego== "I have training, you don't" wall came up. So I ended up changing their program to what worked for me-- and they couldn't figure out why I wouldn't do-- "x". AARGGHHHHHHHHHHH Tracie, Thank You, that makes complete sense, my doctor told me that I have the granulomas in the brain and spinal cord, and they are blocking the signal to the legs, hands etc. so I probably have both things going on! I think I need to put more thought into this. So did you find PT helpful, or just made things worse? I'm thinking I will have to give up Speech and OT so I can have that money for the drugs, I'm not sure they are really helping me anyway! and I if I get on a medication that will slow this down I won't need speech and OT. I had a nice chat with Becky yesterday, I am so glad I got on, first I said I would be there, then side track(what a surprise) and doing laundry, to come back and find she went there and I wasn't there, so I'm glad she tried it again! I hope you have a good day! Marla In a message dated 2/10/2008 10:10:12 P.M. Pacific Standard Time, mebramer (AT) gmail (DOT) com writes: my family thinks it's crazy that I want a wheel chair, but I find I can't keep up with anyone, and I can't walk for very long, it's so hard to explain to them how I feel, the more I use my legs, the weaker they become and it's hard to explain that weakness feeling. Marla, one way to explain the fatigue in your muscles to your family is that with NS-- the toxins build up in your body, and your body can't clear them out like it would if you were healthy. The other part is that the oxygenation can't get past the granulomas-- it can't break thru that knot that is muscle. This was one of the biggest issues I had when I went for physical therapy last summer. I'd be doing great while at the gym-- but it took me 3 days longer to recover, and I'd be in 2 days later-- so I didn't have the stamina to handle the session. I didn't understand it-- so after asking the PT, and not having him give me an answer, I took the question to my chiropractor. The way she explained it is that we have to have oxygen to make our muscles work-- our bodies hang on to all the O2 we get-- and use it to protect our vital organs-- so that doesn't leave any to heal the muscles after exercise. Add the fact that any exercise or muscle use tears (rips) muscle, and in your hubby or son-- they're better in 24-48 hrs. Normal body systems. We already have those knots, and our blood stream already is full of cytokines carrying inflammation in the blood cells, and we're deficiant in the stuff it takes to heal-- and since you've now injured those muscles== and our bodies celebrate and send more cytokines in the way of inflammation to heal and then it doesn't get the signal to clear out all that stuff-- it just keeps building cell layer on cell layer--and -- wahoo-- more granulomas! This problem is not one of deconditioning--- or at least deconditioning is not the PRIMARY problem-- it is part of the progression of the sarcoidosis cycle. One thing that has helped me and i know you know this is that I do take a lot of Milk Thistle to keep my liver as happy as it can be-- so that it can clear as much of the toxins as possible, and also to make sure that I stay as hydrated -- I like to drink Propel- it has the electrolytes that we need-- and take the MSM both before and immediately after doing any exercise-- (this even means going to the grocery store--so don't think I'm saying use the treadmill only) I'm referring to the normal Activities of Daily Living exercise, vacumming, shopping, picking up the mail, etc. On to the wheelchair issue-- I want to say smack those guys-- but I won't. What I will say is that you need to talk to your MD. He can qualify you for a chair-- and then Medicare will help pay for it. I don't know what it takes to qualify-- but at least you can try to get it covered. I know it's such a challenge to make these choices-- but if it keeps you more mobile-- than that would be a good thing. Have you considered the riding mowers-- I think that's going to be my choice-- (kidding.) Love to you, Tracie NS Co-owner/moderator Who's never won? Biggest Grammy Award surprises of all time on AOL Music.-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 , I am going to buy a big thing of bubble wrap and send it to you. Then you can wrap yourself in it and if you fall you will be protected. Plus you can hear all of the cool popping! Just kidding. Hope you heal well and sorry I haven't been around lately but you are on my mind. Terri G. > > I got lucky and got my wheelchair off the Freecycle website. There was someone ahead of me but it was too small for that persons mother in law so they emailed me. I have only taken it out once so far but it sure came in handy last week when I had chemo & I think I broke that bone in my foot AGAIN. > > Join our Sock Challenge for Orphans in Kazakhstan > http://groups. yahoo.com/ group/Mittens_ for_Akkol/ > > > grannylunatic@... > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > Quote Link to comment Share on other sites More sharing options...
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