Guest guest Posted December 8, 2009 Report Share Posted December 8, 2009 Hi Vicky: I felt the same as you over 6 years ago when RA reared its ugly head on me. I had never heard of RA before, so I looked it up on the Net. I was scared to death about it, and shut off my computer and never looked again.  I am on 10 mg. a day of Pred., Placquenil, Sulfasalazine, MTX inject. each week, Leucovorin, and calcium & vit.D. I have tried repeatedly to get off Pred., but have not been successfull. I keep trying off and on.  My feet and ankles were hit the worst, then my hands, thumbs and fingers. It has taken 5 years for me to be free of pain and flares. I have been in a medicine induced remission for the last year. I have found the right " cocktail " of meds. and they are working wonderfully for me. How long this will last, I do not know. I am very grateful for all this. I have a wonderful Rheumy who is a Godsend, and takes such good care of me. My blood work is good, and I have never had any issues with my liver. I follow my drs. orders to the letter of the law. All this has worked well for me.  My Rheumy insisted that I rest daily, which I do. I have not had any alcohol since being diagnosed. I was not much of a drinker anyway. I did not want to have any liver issues.  I have changed things in my life to work around my RA. The hardest thing for me was to pace myself each day. I did so much before, now I do just what I can. At least I can do things. I can't shop all day like before, but I am happy for a few hours here and there. We all have to find a happy medium to make our life happy and content. I don't appologize to family and friends if I can't go with them. I used to feel guilty about saying no. Not anymore. They have come to understand why. That took a long time for them to get it. Remember, only the people that have RA know just what we are dealing with each and every day of our lives.  I thank God every day that I found our wonderful group. It was the best thing I did for myself.  Wishing you better days ahead. Glad to meet you Vicky.  Hugs,  Barbara From: vickyn730 <vickyn730@...> Subject: [ ] hello! Date: Monday, December 7, 2009, 10:40 PM  Hello all. My name is vicky I am 24 and I was recently diagnosed with RA and it has scared be to death because it was found by a positive ANA and my aunt died recently of complications from lupus and RA. I have swelling and severe pain and stiffness in my hands and knees, I also have problems with my neck which they say may be degenerative disc disease. I am currently on 10mg of methotrexate, 200mg of plaquel, Tapering down on prednisone down to 5mg thank goodness and 75mg of diclofenac twice a day! I am feeling about 40 percent better. Am I ever going to feel normal again? Am I ever going to be able to not take all these meds? Please someone who has been in my shoes help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Hi dear Friend, Hope you are having a relatively pain free day. It is gloomy here in So Fla. Well, the house is all decorated for the holidays (well not me, but my youngest daughter!!!!!Hard to feel sad with all the love you feel within your home and family. Now the wrapping and gotta get the presents in the mail to Chicago. Trying to work with my hands and my knees. Wow, the pain is unrelenting. Because I too many side effects, the rheumy says that I will be going it alone. Over the past 10 years, I forgot how much relief those designer drugs can truly give you. Well, my insurance changes on 1-1-10 and maybe there is another rheumy close to home. Had to cx 2 appts with blood doctor, have another one for Monday where they will flush my port, but won't get my transfusion until next year. Well, Santa must get busy even with the help of my cabana boys, I still have things to do. Enjoy a pain free weekend. It was so nice to read that you and your family had such a wonderful holiday. Can't put a price tag on that!! Gentle, tender, angel hug................. Debs in FL [ ] hello! Date: Monday, December 7, 2009, 10:40 PM Hello all. My name is vicky I am 24 and I was recently diagnosed with RA and it has scared be to death because it was found by a positive ANA and my aunt died recently of complications from lupus and RA. I have swelling and severe pain and stiffness in my hands and knees, I also have problems with my neck which they say may be degenerative disc disease. I am currently on 10mg of methotrexate, 200mg of plaquel, Tapering down on prednisone down to 5mg thank goodness and 75mg of diclofenac twice a day! I am feeling about 40 percent better. Am I ever going to feel normal again? Am I ever going to be able to not take all these meds? Please someone who has been in my shoes help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Hi Debs: I was so happy to her from you this morning. Yes, our weather here has been cloudy and cool. Today is just so beautiful. Very tropical temp., breezy with full sun. I am just loving it.  I pray that with your new ins. next month, you can find a Rheumy. who cares enough about you and your daily struggle. You have suffered way too much in these past years. There has to be a better Rheumy then you have had. You have had way too many near death episodes, and way beyond too much pain and sufffering each and every day. My wish and daily prayers are for you to find the most caring, smart, and loving Rheumy who will take an interest in all you have been through and going through. You so deserve it Debs, and are entitled to a much better dr. There are so many pain meds. out there for you, and you need to have them daily so the quality of your life gets better. Severe pain is very hard to live with, and try to have a life with suffering it almost impossible. I know your daily batttle and struggle. I so want a better life for you. Living with all that you do is pure hell. I feel that better days are ahead for you.  Our house is decorated and the tree is up on our Lanai. I just love a real tree. It smells so good!!!! I put a few decorations in my bedroom, a cute snowman w/sparkle and a pink vest, my fav. color, and a cute angel. I also put a jingle bell wreath on my bedroom door. So cute. I too need to wrap all the gifts and get them ready for Christmas. I did 99% of my shopping on E-Bay, which was great. I went out a few times to finish it all up. I can only shop a few hours at a time. Gone are the days with all day shopping. I so love Christmas too. We have 3 things on the front lawn. A white deer whose head moves, and he lights up with white lights, a spiral Tree, and a half circle of red candy canes in front of the deer and tree. I just love them. From outside you can see the tree on the Lanai behind the things on the lawn. It looks so festive here.  We usually have a big dinner on all holidays, but this year we all voted to have easy things, finger foods, salads etc. Make the day easier for all of us. Sounds good to me!!!  I am still feeling very good and my RA is still quiet. Its been over a year now, and I am very grateful for all this. I don't know when my divorce will be final. Things mover very slowly here in the South. That has been so hard, very sad, but I am doing so much better. I joined the Red Hat society for socail fun, and I do enjoy it. I also ran into a good friend of mine here where I live. I met her when we were 18 and working in Boston. I use to commute with her daily. We are having so much fun, going down memory lane, going out together shopping, movies, lunch, etc. She has re-entered my life when I so needed a good friend. She lives 3 miles from me! We are still reeling from the shock of us meeting each other. It has made such a good and happy change in our lives. Her husband is so nice too. We do a lot of laughing and talking!!!!  I so pray that your hands and knees stop hurting, and that you can get out of all that terrible pain. Does the change in our weather make them worse? I know I am not in pain, but my feet and ankles are so stiff it is very hard to walk. I am so afraid of falling again. I exercise them, but that doesn't do a thing for them. I am going slow and being extra careful.  I hope those Cabana boys do everything for you! Wait on you hand and foot!! Make you a Queen each and every day.......  Please take good care of yourself, and rest as much as possible. I know your daily struggle each day. God Bless you and your family. We will talk again before Christmas.  Much love and lots of hugs.  Your friend Barbara From: vickyn730 <vickyn730 (DOT) com> Subject: [ ] hello! @gro ups.com Date: Monday, December 7, 2009, 10:40 PM Hello all. My name is vicky I am 24 and I was recently diagnosed with RA and it has scared be to death because it was found by a positive ANA and my aunt died recently of complications from lupus and RA. I have swelling and severe pain and stiffness in my hands and knees, I also have problems with my neck which they say may be degenerative disc disease. I am currently on 10mg of methotrexate, 200mg of plaquel, Tapering down on prednisone down to 5mg thank goodness and 75mg of diclofenac twice a day! I am feeling about 40 percent better. Am I ever going to feel normal again? Am I ever going to be able to not take all these meds? Please someone who has been in my shoes help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 Good Morning Barbara, Thanks for taking the time out to keep in touch with me. It is such a busy time of year. ALL my shopping was done thru catalogs, the internet and QVC. [ ] hello! @gro ups.com Date: Monday, December 7, 2009, 10:40 PM Hello all. My name is vicky I am 24 and I was recently diagnosed with RA and it has scared be to death because it was found by a positive ANA and my aunt died recently of complications from lupus and RA. I have swelling and severe pain and stiffness in my hands and knees, I also have problems with my neck which they say may be degenerative disc disease. I am currently on 10mg of methotrexate, 200mg of plaquel, Tapering down on prednisone down to 5mg thank goodness and 75mg of diclofenac twice a day! I am feeling about 40 percent better. Am I ever going to feel normal again? Am I ever going to be able to not take all these meds? Please someone who has been in my shoes help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 Gee what happened!!!!!!!! I am so sorry. We redecorated the inside of the house during the summer months and boy did that make a difference in decorating with Christmas items. My husband says that I have to downside everything, so I guess I did a pretty good job! Well, they managed to get the big tree in the Living Room and a smaller tree in the Family Room. I have the fiber optic trees in all the bedrooms and a few extra decorations in our bedroom. My youngest daughter did a beautiful job with the outside lights, angels, the winter animals and this year I added winter cardinals to my display. I was reading that some TV star had a deer in her yard for each of her kids...........so that is my mission for next year and look for little ones for my grandkids.great. Next weekend is our baking session. The baby is almost 1 1/2 and will be a great " help " . Ah, it is all good! Grandma just supervises and taste tests! Try not to let the family see me such a bad condition. Well, enjoy the beautiful weather and we will try to muddle thru! Gentle, tender, angel hugs............. Debs in FL [ ] hello! @gro ups.com Date: Monday, December 7, 2009, 10:40 PM Hello all. My name is vicky I am 24 and I was recently diagnosed with RA and it has scared be to death because it was found by a positive ANA and my aunt died recently of complications from lupus and RA. I have swelling and severe pain and stiffness in my hands and knees, I also have problems with my neck which they say may be degenerative disc disease. I am currently on 10mg of methotrexate, 200mg of plaquel, Tapering down on prednisone down to 5mg thank goodness and 75mg of diclofenac twice a day! I am feeling about 40 percent better. Am I ever going to feel normal again? Am I ever going to be able to not take all these meds? Please someone who has been in my shoes help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Hey Bill, No, you didn't catch most of the typos but does anyone care? I, for sure, do not. No prob and not to worry about it. Also, if you want to start that group I ll join. So sorry about all of your pain in the back issues. Not fun, is it? Glad you were able to retain your sense of humor, no matter how wet or dry. Onward - The question I have from reading your post is - what kind of chair were you able to find to sit? I have gone through so many, I now have more chairs than I know what to do with and none of them work. Pads, pillows, wads of paper, blankets, rugs, sheepskin - you name it - I have tried all various combinations to no avail. Not only do I need a good chair, I was in need of a good mattress as well. I finally landed on an extra firm mattress topped with a firm 3 " latex mattress pad, topped with a 1 " softer latex pad. It seems to work, but suggestions are appreciated. My problem is with DDD lumbar 1 through 5 and the need for total hip replacement. It sounds like you know what you are doing and have some great information to share. I'm now working on treating bone health through nutrition, supplements, and looking to future ability to exercise, let alone walk again -- Hello! HI ALL, I am located in the Styx of far Northern New York State where " the natives " all seem to complain that the rest of the world doesn't know we are here. Since I'm a refuge from the rest of the world, I keep begging, " Please don't tell anyone. The area will be ruined, if " discovered! " Um I am north of Albany, Syracuse, Watertown, etc. The nearest village of any consequence is Potsdam. If I go 1/2 hour Northwest, I will be able to see across the St Lawrence River into Canada. We tend to forget it is a different nation around here. I'm about an hour from Ottawa, Canada's Capital and 2 1/2 hours from Montreal. The weather here is cold, but is seldom below -20 or so F anymore (-40 used to be common.). I know we are far from alone in that department. The great thing here is being far enough north so the winds off Lake Ontario seldom blow the " Uge " (credit to Fucillo - if you don't know him, look him up - a good source of laughs with his car ads (amounts of snow they get in the area off the lake up our way. We don't have to shovel the cold. I spent about 40 years in and around the snow belt " and 30 going places through, or in middle of it, so I really appreciate more moderate snowfall! I have " Arthur " (Osteo) from the tip of my toes to the base of my skull (possibly in my " so called " brain). However, were it not for 16 plus years dealing with the effects of Spinal Stenosis, I'd be almost " home free. " It constantly amazes me that there are so many, even in our sparsely populated area with really debilitating back problems (makes me almost forget all about my neck which started in 1976 (age 33) who will talk about it " all day and all night, " but have shown no interest when I've tried to get a " Back User's Group " started. As we all know, collectively, even those in " my " area know far more about what it takes to try and get help for and live with a " bad back " than almost any Doc, or other practitioner! So much of what we need to know, is practical (like the 3 1/2 years I " lived on the couch - could not sit in most chairs, stand long or walk much after an incomplete emergency surgery. Just " comparing notes " informally can be a great help. Most I know with back, neck and related problems are blessed with good to excellent senses of humor. It is far better to laugh than cry! Laughter may not, in fact be the " beat medicine. " but it is, most often (for those I know) the biggest help in living with this " stuff. " I say that even though I m blessed with a lady who threw in with me when I was " OK " and who has taken all that goes with living with a bad back with me " attached " in stride. I've seen medical problems destroy enough couples and families to know I really struck gold! " But she is not a bubbly, or goofy type that is always laughing so we find that where we can. My humor is so dry many don't realize when I m joking, so it really helps being around people who are totally 'unsane! " My real interests in life are too many and too varied for me to pursue most as I'd wish, even, if I had no back/neck/foot problems. I'm defined more by my love of " cars, " motor sport and devotion to the cause of Driver and Highway traffic safety than anything else, but dogs ( " All Creatures Great and Small " ), travel, music, working with my hands and brain and trying to get a photograph now and then (I take a lot of pics, but get few photographs!) are all close behind. I even like some humans (example om my " homor " ), but prefer small groups or one or two at a time! I could complain that living where we are makes finding help more difficult, but, from what I've seen, having lots of Medical facilities and practitioners is often no better than having a long stretch of road with every kind of car known available. It's so seldom that we find anyone who is honest and competent and cares! Getting to a Doc, Pain Facility, etc can be really daunting and, if there is any help when we do get there, it comes as a pleasant surprise to me! I don't care how great their reputations are, I have found all seriously wanting, even those where I did benefit greatly! Having a truly excellent, caring, compassionate, Family Doc (with unconventional, as well as the typical " training " an outlook) is truly a all to rare a blessing in this " day and age. " I've bee with him since the fall of 1994 (shortly after the Spinal Stenosis was " found " ). Im' sure many can top the 4 1/2 month ordeal I lived through seeking help once the Stenosis literally " stopped me in my tracks. " It was/is a classic case, yet almost all I sought help from were clueless - didn't even try to refer me to anyone who might know something! It was as obvious as a car failing to start with the hood up and the battery missing! This sort of thing happens far, far far too often. I have a younger friend (now about 46). who was felled by a massive Stroke just about 7 years ago. I crack him up every time I say, " we know SO MUCH MORE (shouting intended!) than we did 5 years ago! He sure makes me count my blessings and he is far from totally useless, but can't work, etc! I am tired of thinking about this so it's well pas time to end this. I do hope I can find some help here and, possibly, provide some kind to some others. I got a computer to find help for " Ye Ole Back, " but, so far, it's really only helped my head (a great deal). That makes it worth the cost many times over. If I weren't so inept with it....... But I have no kids to teach me. When I got my first in 2003, my neice (3rd year college at the time) thought she could teach me all I needed to know in 3 hours! She grew up with PCs as they were were " growing up. " " Nuff said. " All the best Bill - NY Ohhhhh, I hope I caught most of the " type O's! " ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Welcome Bill, I also live remote (near by town only has 600) and its an artist community; I am the resident writer and classicist musician and at my age dealing with stenosis and a fractured disc at c-6-7 and in PT and take mediation to get me through the day, I am also dealijg with a combo of FIBRO and PMR I know that you will find good suport here in our group Be welcome! Annie A poet is, after all, to see ________________________________ From: william moss <detalor@...> neck pain Sent: Fri, January 8, 2010 12:13:00 PM Subject: Hello! HI ALL, I am located in the Styx of far Northern New York State where " the natives " all seem to complain that the rest of the world doesn't know we are here. Since I'm a refuge from the rest of the world, I keep begging, " Please don't tell anyone. The area will be ruined, if " discovered! " Um I am north of Albany, Syracuse, Watertown, etc. The nearest village of any consequence is Potsdam. If I go 1/2 hour Northwest, I will be able to see across the St Lawrence River into Canada. We tend to forget it is a different nation around here. I'm about an hour from Ottawa, Canada's Capital and 2 1/2 hours from Montreal. The weather here is cold, but is seldom below -20 or so F anymore (-40 used to be common.). I know we are far from alone in that department. The great thing here is being far enough north so the winds off Lake Ontario seldom blow the " Uge " (credit to Fucillo - if you don't know him, look him up - a good source of laughs with his car ads (amounts of snow they get in the area off the lake up our way. We don't have to shovel the cold. I spent about 40 years in and around the " snow belt " and 30 going places through, or in middle of it, so I really appreciate more moderate snowfall! I have " Arthur " (Osteo) from the tip of my toes to the base of my skull (possibly in my " so called " brain). However, were it not for 16 plus years dealing with the effects of Spinal Stenosis, I'd be almost " home free. " It constantly amazes me that there are so many, even in our sparsely populated area with really debilitating back problems (makes me almost forget all about my neck which started in 1976 (age 33) who will talk about it " all day and all night, " but have shown no interest when I've tried to get a " Back User's Group " started. As we all know, collectively, even those in " my " area know far more about what it takes to try and get help for and live with a " bad back " than almost any Doc, or other practitioner! So much of what we need to know, is practical (like the 3 1/2 years I " lived " on the couch - could not sit in most chairs, stand long or walk much after an incomplete emergency surgery. Just " comparing notes " informally can be a great help. Most I know with back, neck and related problems are blessed with good to excellent senses of humor. It is far better to laugh than cry! Laughter may not, in fact be the " beat medicine. " but it is, most often (for those I know) the biggest help in living with this " stuff. " I say that even though I'm blessed with a lady who threw in with me when I was " OK " and who has taken all that goes with living with a bad back with me " attached " in stride. I've seen medical problems destroy enough couples and families to know I really " struck gold! " But she is not a bubbly, or goofy type that is always laughing, so we find that where we can. My humor is so dry many don't realize when I'm joking, so it really helps being around people who are totally 'unsane! " My real interests in life are too many and too varied for me to pursue most as I'd wish, even, if I had no back/neck/foot problems. I'm defined more by my love of " cars, " motor sport and devotion to the cause of Driver and Highway traffic safety than anything else, but dogs ( " All Creatures Great and Small " ), travel, music, working with my hands and brain and trying to get a photograph now and then (I take a lot of pics, but get few photographs!) are all close behind. I even like some humans (example om my " homor " ), but prefer small groups or one or two at a time! I could complain that living where we are makes finding help more difficult, but, from what I've seen, having lots of Medical facilities and practitioners is often no better than having a long stretch of road with every kind of car known available. It's so seldom that we find anyone who is honest and competent and cares! Getting to a Doc, Pain Facility, etc can be really daunting and, if there is any help when we do get there, it comes as a pleasant surprise to me! I don't care how great their reputations are, I have found all seriously wanting, even those where I did benefit greatly! Having a truly excellent, caring, compassionate, Family Doc (with unconventional, as well as the typical " training " an outlook) is truly a all to rare a blessing in this " day and age. " I've bee with him since the fall of 1994 (shortly after the Spinal Stenosis was " found " ). Im' sure many can top the 4 1/2 month ordeal I lived through seeking help once the Stenosis literally " stopped me in my tracks. " It was/is a classic case, yet almost all I sought help from were clueless - didn't even try to refer me to anyone who might know something! It was as obvious as a car failing to start with the hood up and the battery missing! This sort of thing happens far, far ,far too often. I have a younger friend (now about 46). who was felled by a massive Stroke just about 7 years ago. I crack him up every time I say, " we know SO MUCH MORE (shouting intended!) than we did 5 years ago! He sure makes me count my blessings and he is far from totally useless, but can't work, etc! I am tired of thinking about this so it's well pas time to end this. I do hope I can find some help here and, possibly, provide some kind to some others. I got a computer to find help for " Ye Ole Back, " but, so far, it's really only helped my head (a great deal). That makes it worth the cost many times over. If I weren't so inept with it....... But I have no kids to teach me. When I got my first in 2003, my neice (3rd year college at the time) thought she could teach me all I needed to know in 3 hours! She grew up with PCs as they were were " growing up. " " Nuff said. " All the best Bill - NY Ohhhhh, I hope I caught most of the " type O's! " ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Geeeee, I sure don't feel like I know what I am doing. But thanks for the compliment. With the Stenosis, I sure know the Lumbar region all too well (and the Cervical and Thoracic and, even, the Sacral a little. From mid June of 2002 (after am emergency = I was spinning like a late in pain) Dischetomy (sp? - checker is often not help) and Laminectomy at L23, I could not sit in most chairs. Occasionally I hit on one where I could make it for a few minutes. But we sure saved a lot of $$$ on eating out and traveling, as I got real good at my " Nero " impersonation. The really whaky thing was that I was able to drive a Van I had not been able to tolerate (pressure on the nerves = " On fire! " and out other vehicles. I could not really do more than hobble around the house, or stand unaided. I used 2 canes to stand me up straighter, take some of the weight off the nerves in my back and the leg where the muscled was affected during the emergency by nerve damage and take a half decent stride. We had a wonderful little shaggy dog who I was able to walk with that way (kept me moving some). She only once got tangled around one of the canes, though mailboxes and signposts were another matter. One of our neighbors who, rightly thinks I have to much " stuff " doesn't understand why I have a good sized collection of car and van seats. Sometimes I need to change and other times I need to replace what is in a vehicle. There is no value to high I can place on them! I, too have a collection of cushions and the like. Back when my back was OK we got a good swivel rocker and located it so I could watch TV, swing around the room to talk to someone anywhere in it, face the front door and face the kitchen, dining and hall area. There were only 3 of us, but the only time that chair " cooled off " was when we were out. It was a big help to neck initially. We got it in spet., 89 and got another last summer (I refused to dispose of tje old one - needs a little repair and a new cushion. I'd already had a hassock, but it became indispensable when it came to easing the severe pain and stiffness in my calves caused by the Stenosis. I can still make my legs go limp to relax then and what they are attached to. I also had to find ways to make my self " fit " the chair and after several months on the couch I trained myself to " perch " in the chair with most of my weight on my upper back and elbows - really an Isometric Exercise. A surgery (different Doc) to " finish " the one in 2002 (Nov of 05) helped a lot, but I now have an Obus Forme Back Support in 3 of our 4 vehicles (my ratty old Datsun 280 Z(ed) has a " perfect " seat for me and the ride, though stiff, does not transmit the road shock to my spine, as do so many vehicles. The Obus products are available in lots of places, but I've gotton my last " few " from sitincomfort/com operated by a for real store in Ohio somewhere. I've lost track, but have loaded one of mine to at least 4 others who got their own. But they are not what everyone needs! What I use is ther4e original low back support (Orthopedic Back Support System - OBUS - developed in Canada. it has a Carbon Fiber frame with a foam and cloth covering. Wish I had a pic, but still can scan anything into this thing. Since June my back has been worse again (after 15 pretty good months). The new chair is a recliner rocker we had a swivel put on. The recline part lets me adjust my weight and position and I have my feet propped will above my hips (opens things up) ann often relives the pain (now coming from L45 and affecting the big muscles in my left leg - Yeeee Ouch!!!!! It depends on the ????, but I sometimes use a 1 inch thick gel cushion, especially in a vehicle with a harsh ride that comes through the eat. I also use it in the chair at times. You, of course are well aware that backs make absolutely no sense and we have to just try and try till we get something that works. It was an 8 1/2 month ordeal when my wife had to get another car. We drove the old one " into the ground, as my back was happy in it. Some that many find very comfortable really " killed me! " So much for " the system' that so many dealers employ where they let you try something for 15 minutes and expect you spend " a whole lot of $$$ " based on that with a back that may not like the seat after 1/2 hour to 3 hours. Thankfully we found no less than 3 salesmen who really worked with us - a blessing of being in the wilds. We got a new Queen size bed, but my back could take it after June. Good thing the couch has a lump in just the right place! I am trying to get going with Pt again, but I've been going so long, they don't seem to be taking me seriously enough and something keeps getting in the way. The have a device that looks a lot like a Parachute Harness they suspend those with trouble walking from (take 30 - 40 pounds or more off each leg. In my case, it provided an accidental benefit - loosened up my very tight upper spine as it effectively provides good traction. They didn't know to use the Crotch Straps then. Now I refuse to use them. The first time on it in nearly 2 years (barely able to get to it) I went 8 minutes at 2.5 mph and stopped only because I wanted to be able to do it again!!!! It's called an " Unweighting Device. " It's the wrong kind, but something sorely needed in most medical offices!!!! There is another place at one of the area coleges that has one as well. I may end up over there...... Sorry the " answer " got so long, but that's the way it is and I often get important " clues " where, or when I don't don't expect to! BTW I've seen many who just had hip and knee replacements trotting along just fine on the treadmill with the " Unweighting " Device. It might even work pre op - could be better than not moving! The Canine has informed me supper is reddy! Best Bill > From: sms <sms@...> > Subject: Re: Hello! > neck pain > Date: Friday, January 8, 2010, 12:29 PM > Hey Bill, > No, you didn't catch most of the typos but does anyone > care? I, for sure, do > > not. > No prob and not to worry about it. Also, if you want to > start that group I > ll join. So sorry about all of your pain in the back > issues. Not fun, is it? > > Glad you were able to retain your sense of humor, no matter > how wet or dry. > > Onward - The question I have from reading your post is - > what kind of chair > were you able to find to sit? I have gone through so many, > I now have more > chairs than I know what to do with and none of them work. > Pads, pillows, > wads of paper, blankets, rugs, sheepskin - you name it - I > have tried all > various combinations to no avail. > > Not only do I need a good chair, I was in need of a good > mattress as well. I > > finally landed on an extra firm mattress topped with a firm > 3 " latex > mattress pad, topped with a 1 " softer latex pad. It seems > to work, but > suggestions are appreciated. > > My problem is with DDD lumbar 1 through 5 and the need for > total hip > replacement. > > It sounds like you know what you are doing and have some > great information > to share. I'm now working on treating bone health through > nutrition, > supplements, and looking to future ability to exercise, let > alone walk again > > > > > > > -- Hello! > > HI ALL, > > I am located in the Styx of far Northern New York State > where " the natives " > all seem to complain that the rest of the world doesn't > know we are here. > Since I'm a refuge from the rest of the world, I keep > begging, " Please don't > > tell anyone. The area will be ruined, if " discovered! " > > Um I am north of Albany, Syracuse, Watertown, etc. The > nearest village of > any consequence is Potsdam. If I go 1/2 hour Northwest, I > will be able to > see across the St Lawrence River into Canada. We tend to > forget it is a > different nation around here. I'm about an hour from > Ottawa, Canada's > Capital and 2 1/2 hours from Montreal. The weather here is > cold, but is > seldom below -20 or so F anymore (-40 used to be common.). > I know we are far > > from alone in that department. The great thing here is > being far enough > north so the winds off Lake Ontario seldom blow the " Uge " > (credit to > Fucillo - if you don't know him, look him up - a good > source of laughs with > his car ads (amounts of snow they get in the area off the > lake up our way. > We don't have to shovel the cold. I spent about 40 years in > and around the > snow belt " and 30 going places through, or in middle of it, > so I really > appreciate more moderate snowfall! > > I have " Arthur " (Osteo) from the tip of my toes to the base > of my skull > (possibly in my " so called " brain). However, were it not > for 16 plus years > dealing with the effects of Spinal Stenosis, I'd be almost > " home free. " > > It constantly amazes me that there are so many, even in our > sparsely > populated area with really debilitating back problems > (makes me almost > forget all about my neck which started in 1976 (age 33) who > will talk about > it " all day and all night, " but have shown no interest when > I've tried to > get a " Back User's Group " started. As we all know, > collectively, even those > in " my " area know far more about what it takes to try and > get help for and > live with a " bad back " than almost any Doc, or other > practitioner! > > So much of what we need to know, is practical (like the 3 > 1/2 years I " lived > > on the couch - could not sit in most chairs, stand long or > walk much after > an incomplete emergency surgery. Just " comparing notes " > informally can be a > great help. > > Most I know with back, neck and related problems are > blessed with good to > excellent senses of humor. It is far better to laugh than > cry! Laughter may > not, in fact be the " beat medicine. " but it is, most often > (for those I > know) the biggest help in living with this " stuff. " I say > that even though I > > m blessed with a lady who threw in with me when I was " OK " > and who has taken > > all that goes with living with a bad back with me > " attached " in stride. I've > > seen medical problems destroy enough couples and families > to know I really > struck gold! " But she is not a bubbly, or goofy type that > is always laughing > > so we find that where we can. My humor is so dry many don't > realize when I > m joking, so it really helps being around people who are > totally 'unsane! " > > My real interests in life are too many and too varied for > me to pursue most > as I'd wish, even, if I had no back/neck/foot problems. I'm > defined more by > my love of " cars, " motor sport and devotion to the cause of > Driver and > Highway traffic safety than anything else, but dogs ( " All > Creatures Great and Small " ), travel, music, working with my > hands and brain > and trying to get a photograph now and then (I take a lot > of pics, but get > few photographs!) are all close behind. I even like some > humans (example om > my " homor " ), but prefer small groups or one or two at a > time! > > I could complain that living where we are makes finding > help more difficult, > > but, from what I've seen, having lots of Medical facilities > and > practitioners is often no better than having a long stretch > of road with > every kind of car known available. It's so seldom that we > find anyone who is > > honest and competent and cares! Getting to a Doc, Pain > Facility, etc can be > really daunting and, if there is any help when we do get > there, it comes as > a pleasant surprise to me! I don't care how great their > reputations are, I > have found all seriously wanting, even those where I did > benefit greatly! > > Having a truly excellent, caring, compassionate, Family Doc > (with > unconventional, as well as the typical " training " an > outlook) is truly a all > > to rare a blessing in this " day and age. " I've bee with him > since the fall > of 1994 (shortly after the Spinal Stenosis was " found " ). > Im' sure many can > top the 4 1/2 month ordeal I lived through seeking help > once the Stenosis > literally " stopped me in my tracks. " It was/is a classic > case, yet almost > all I sought help from were clueless - didn't even try to > refer me to anyone > > who might know something! It was as obvious as a car > failing to start with > the hood up and the battery missing! This sort of thing > happens far, far > far too often. > > I have a younger friend (now about 46). > who was felled by a massive Stroke just about 7 years ago. > I crack him up > every time I say, " we know SO MUCH MORE (shouting > intended!) than we did 5 > years ago! He sure makes me count my blessings and he is > far from totally > useless, but can't work, etc! > > I am tired of thinking about this so it's well pas time to > end this. I do > hope I can find some help here and, possibly, provide some > kind to some > others. I got a computer to find help for " Ye Ole Back, " > but, so far, it's > really only helped my head (a great deal). That makes it > worth the cost many > > times over. If I weren't so inept with it....... But I have > no kids to teach > > me. When I got my first in 2003, my neice (3rd year college > at the time) > thought she could teach me all I needed to know in 3 hours! > > She grew up with PCs as they were were " growing up. " " Nuff > said. " > > All the best > > Bill - NY Ohhhhh, I hope I caught most of the " type O's! " > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 HI I'm back for/with more. I forgot to mention that there are some wickedly expensive chair and ottoman sets that, I thin, come from Sweeden. Real ultra modern and all swoopy. I tried a couple in a local store here a good while back, but wasn't willing 5to risk the $$$. I pretty much achieve the same thing (sitting like an Astronaut at launch) with what I have. A close friend of my dad and, I'm proud to say mine, had one. He could not have surgery for Stenosis due to a severe heat condition. What I saw it do to him is the perfect answer to " Never have back surgery! " I was unable to stand or walk unassisted for about the last 8 years and his upper back was very rouded due to the chair (Mine is trying that too, but doesn't hurt as it did when straighter. Our old friend was loosing control of his legs the last time we saw him in October, 2008. He had lived 41 years following a massive, debilitating heart attack (from which he made a very good recovery. He and his wife were 2 of the ultimate survivors in this world, but their infirmaries grew so bad ...... they were found together on their bed with huge amounts of Rx painkillers in their systems. they lived on their own terms, once escaping the Nazis and died the same way. It is tragic that it must come to that! Even in October, 2008, despite their infirmaries, their minds were perfect and they spoke and lived with great gusto. They were just able to do so little and she felt so weak and tired (had been very ill). My dad died in his sleep at 84. i know that is what they wanted, but it didn't come. Best Bill --- Time for some more ZZZZ's hope you can, at least get reasonably comfortable to sleep and when trying to sit! > From: sms <sms@...> > Subject: Re: Hello! > neck pain > Date: Friday, January 8, 2010, 12:29 PM > Hey Bill, > No, you didn't catch most of the typos but does anyone > care? I, for sure, do > > not. > No prob and not to worry about it. Also, if you want to > start that group I > ll join. So sorry about all of your pain in the back > issues. Not fun, is it? > > Glad you were able to retain your sense of humor, no matter > how wet or dry. > > Onward - The question I have from reading your post is - > what kind of chair > were you able to find to sit? I have gone through so many, > I now have more > chairs than I know what to do with and none of them work. > Pads, pillows, > wads of paper, blankets, rugs, sheepskin - you name it - I > have tried all > various combinations to no avail. > > Not only do I need a good chair, I was in need of a good > mattress as well. I > > finally landed on an extra firm mattress topped with a firm > 3 " latex > mattress pad, topped with a 1 " softer latex pad. It seems > to work, but > suggestions are appreciated. > > My problem is with DDD lumbar 1 through 5 and the need for > total hip > replacement. > > It sounds like you know what you are doing and have some > great information > to share. I'm now working on treating bone health through > nutrition, > supplements, and looking to future ability to exercise, let > alone walk again > > > > > > > -- Hello! > > HI ALL, > > I am located in the Styx of far Northern New York State > where " the natives " > all seem to complain that the rest of the world doesn't > know we are here. > Since I'm a refuge from the rest of the world, I keep > begging, " Please don't > > tell anyone. The area will be ruined, if " discovered! " > > Um I am north of Albany, Syracuse, Watertown, etc. The > nearest village of > any consequence is Potsdam. If I go 1/2 hour Northwest, I > will be able to > see across the St Lawrence River into Canada. We tend to > forget it is a > different nation around here. I'm about an hour from > Ottawa, Canada's > Capital and 2 1/2 hours from Montreal. The weather here is > cold, but is > seldom below -20 or so F anymore (-40 used to be common.). > I know we are far > > from alone in that department. The great thing here is > being far enough > north so the winds off Lake Ontario seldom blow the " Uge " > (credit to > Fucillo - if you don't know him, look him up - a good > source of laughs with > his car ads (amounts of snow they get in the area off the > lake up our way. > We don't have to shovel the cold. I spent about 40 years in > and around the > snow belt " and 30 going places through, or in middle of it, > so I really > appreciate more moderate snowfall! > > I have " Arthur " (Osteo) from the tip of my toes to the base > of my skull > (possibly in my " so called " brain). However, were it not > for 16 plus years > dealing with the effects of Spinal Stenosis, I'd be almost > " home free. " > > It constantly amazes me that there are so many, even in our > sparsely > populated area with really debilitating back problems > (makes me almost > forget all about my neck which started in 1976 (age 33) who > will talk about > it " all day and all night, " but have shown no interest when > I've tried to > get a " Back User's Group " started. As we all know, > collectively, even those > in " my " area know far more about what it takes to try and > get help for and > live with a " bad back " than almost any Doc, or other > practitioner! > > So much of what we need to know, is practical (like the 3 > 1/2 years I " lived > > on the couch - could not sit in most chairs, stand long or > walk much after > an incomplete emergency surgery. Just " comparing notes " > informally can be a > great help. > > Most I know with back, neck and related problems are > blessed with good to > excellent senses of humor. It is far better to laugh than > cry! Laughter may > not, in fact be the " beat medicine. " but it is, most often > (for those I > know) the biggest help in living with this " stuff. " I say > that even though I > > m blessed with a lady who threw in with me when I was " OK " > and who has taken > > all that goes with living with a bad back with me > " attached " in stride. I've > > seen medical problems destroy enough couples and families > to know I really > struck gold! " But she is not a bubbly, or goofy type that > is always laughing > > so we find that where we can. My humor is so dry many don't > realize when I > m joking, so it really helps being around people who are > totally 'unsane! " > > My real interests in life are too many and too varied for > me to pursue most > as I'd wish, even, if I had no back/neck/foot problems. I'm > defined more by > my love of " cars, " motor sport and devotion to the cause of > Driver and > Highway traffic safety than anything else, but dogs ( " All > Creatures Great and Small " ), travel, music, working with my > hands and brain > and trying to get a photograph now and then (I take a lot > of pics, but get > few photographs!) are all close behind. I even like some > humans (example om > my " homor " ), but prefer small groups or one or two at a > time! > > I could complain that living where we are makes finding > help more difficult, > > but, from what I've seen, having lots of Medical facilities > and > practitioners is often no better than having a long stretch > of road with > every kind of car known available. It's so seldom that we > find anyone who is > > honest and competent and cares! Getting to a Doc, Pain > Facility, etc can be > really daunting and, if there is any help when we do get > there, it comes as > a pleasant surprise to me! I don't care how great their > reputations are, I > have found all seriously wanting, even those where I did > benefit greatly! > > Having a truly excellent, caring, compassionate, Family Doc > (with > unconventional, as well as the typical " training " an > outlook) is truly a all > > to rare a blessing in this " day and age. " I've bee with him > since the fall > of 1994 (shortly after the Spinal Stenosis was " found " ). > Im' sure many can > top the 4 1/2 month ordeal I lived through seeking help > once the Stenosis > literally " stopped me in my tracks. " It was/is a classic > case, yet almost > all I sought help from were clueless - didn't even try to > refer me to anyone > > who might know something! It was as obvious as a car > failing to start with > the hood up and the battery missing! This sort of thing > happens far, far > far too often. > > I have a younger friend (now about 46). > who was felled by a massive Stroke just about 7 years ago. > I crack him up > every time I say, " we know SO MUCH MORE (shouting > intended!) than we did 5 > years ago! He sure makes me count my blessings and he is > far from totally > useless, but can't work, etc! > > I am tired of thinking about this so it's well pas time to > end this. I do > hope I can find some help here and, possibly, provide some > kind to some > others. I got a computer to find help for " Ye Ole Back, " > but, so far, it's > really only helped my head (a great deal). That makes it > worth the cost many > > times over. If I weren't so inept with it....... But I have > no kids to teach > > me. When I got my first in 2003, my neice (3rd year college > at the time) > thought she could teach me all I needed to know in 3 hours! > > She grew up with PCs as they were were " growing up. " " Nuff > said. " > > All the best > > Bill - NY Ohhhhh, I hope I caught most of the " type O's! " > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Hey welcome here. Just wanted to tell you i am from MAINE. Thats pretty bad. Get this its so rural that the nearest walmart to this house is one hour away. All that is here is trees,snow, bugs.I'm about two hours from cananda.welcome to the board cindy > > HI ALL, > > I am located in the Styx of far Northern New York State where " the natives " all seem to complain that the rest of the world doesn't know we are here. Since I'm a refuge from the rest of the world, I keep begging, " Please don't tell anyone. The area will be ruined, if " discovered! " > > Um I am north of Albany, Syracuse, Watertown, etc. The nearest village of any consequence is Potsdam. If I go 1/2 hour Northwest, I will be able to see across the St Lawrence River into Canada. We tend to forget it is a different nation around here. I'm about an hour from Ottawa, Canada's Capital and 2 1/2 hours from Montreal. The weather here is cold, but is seldom below -20 or so F anymore (-40 used to be common.). I know we are far from alone in that department. The great thing here is being far enough north so the winds off Lake Ontario seldom blow the " Uge " (credit to Fucillo - if you don't know him, look him up - a good source of laughs with his car ads (amounts of snow they get in the area off the lake up our way. We don't have to shovel the cold. I spent about 40 years in and around the " snow belt " and 30 going places through, or in middle of it, so I really appreciate more moderate snowfall! > > I have " Arthur " (Osteo) from the tip of my toes to the base of my skull (possibly in my " so called " brain). However, were it not for 16 plus years dealing with the effects of Spinal Stenosis, I'd be almost " home free. " > > It constantly amazes me that there are so many, even in our sparsely populated area with really debilitating back problems (makes me almost forget all about my neck which started in 1976 (age 33) who will talk about it " all day and all night, " but have shown no interest when I've tried to get a " Back User's Group " started. As we all know, collectively, even those in " my " area know far more about what it takes to try and get help for and live with a " bad back " than almost any Doc, or other practitioner! > > So much of what we need to know, is practical (like the 3 1/2 years I " lived " on the couch - could not sit in most chairs, stand long or walk much after an incomplete emergency surgery. Just " comparing notes " informally can be a great help. > > Most I know with back, neck and related problems are blessed with good to excellent senses of humor. It is far better to laugh than cry! Laughter may not, in fact be the " beat medicine. " but it is, most often (for those I know) the biggest help in living with this " stuff. " I say that even though I'm blessed with a lady who threw in with me when I was " OK " and who has taken all that goes with living with a bad back with me " attached " in stride. I've seen medical problems destroy enough couples and families to know I really " struck gold! " But she is not a bubbly, or goofy type that is always laughing, so we find that where we can. My humor is so dry many don't realize when I'm joking, so it really helps being around people who are totally 'unsane! " > > My real interests in life are too many and too varied for me to pursue most as I'd wish, even, if I had no back/neck/foot problems. I'm defined more by my love of " cars, " motor sport and devotion to the cause of Driver and Highway traffic safety than anything else, but dogs ( " All > Creatures Great and Small " ), travel, music, working with my hands and brain and trying to get a photograph now and then (I take a lot of pics, but get few photographs!) are all close behind. I even like some humans (example om my " homor " ), but prefer small groups or one or two at a time! > > I could complain that living where we are makes finding help more difficult, but, from what I've seen, having lots of Medical facilities and practitioners is often no better than having a long stretch of road with every kind of car known available. It's so seldom that we find anyone who is honest and competent and cares! Getting to a Doc, Pain Facility, etc can be really daunting and, if there is any help when we do get there, it comes as a pleasant surprise to me! I don't care how great their reputations are, I have found all seriously wanting, even those where I did benefit greatly! > > Having a truly excellent, caring, compassionate, Family Doc (with unconventional, as well as the typical " training " an outlook) is truly a all to rare a blessing in this " day and age. " I've bee with him since the fall of 1994 (shortly after the Spinal Stenosis was " found " ). Im' sure many can top the 4 1/2 month ordeal I lived through seeking help once the Stenosis literally " stopped me in my tracks. " It was/is a classic case, yet almost all I sought help from were clueless - didn't even try to refer me to anyone who might know something! It was as obvious as a car failing to start with the hood up and the battery missing! This sort of thing happens far, far ,far too often. > > I have a younger friend (now about 46). > who was felled by a massive Stroke just about 7 years ago. I crack him up every time I say, " we know SO MUCH MORE (shouting intended!) than we did 5 years ago! He sure makes me count my blessings and he is far from totally useless, but can't work, etc! > > I am tired of thinking about this so it's well pas time to end this. I do hope I can find some help here and, possibly, provide some kind to some others. I got a computer to find help for " Ye Ole Back, " but, so far, it's really only helped my head (a great deal). That makes it worth the cost many times over. If I weren't so inept with it....... But I have no kids to teach me. When I got my first in 2003, my neice (3rd year college at the time) thought she could teach me all I needed to know in 3 hours! > She grew up with PCs as they were were " growing up. " " Nuff said. " > > All the best > > Bill - NY Ohhhhh, I hope I caught most of the " type O's! " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Wow! thanks for the " note! " Maine sounders pretty good to me. I've gotton more stuff that has been real valuable from little and or obscure places around here - like a collar our last pooch wore the entire 15 years she was with us (good guess on size Eh?). My dog, a few years before her had one she wore about 4 years prior to an untimely end (Cancer). We have used it in emergencies many times. They are designed for " Hunttin Dwags " with special hardware and are soft, thick and wide leather. Also got some great leashes there (long - about 5 ft and rugged, tho the pooch who was here 15 years did chew threw it while trotting backwards and shaking it oh so happily. It's gradually growing around here, but I still have a real nice spot and love the people (I also know how to disappear!) so I guess I'm gonna stay. around here fewer than half of the makes of vehicle sold commonly in the U.S. have dealerships - typical of the area. Since Walmart has invade, that's about all ther is now and they don't have that much of what we need, especially in the new " Sooper Centres " they are puttin up on every streeet corner (it seems). For me, the inconvenience of the Styx is far preferable to that of the big citys! If I could breath what's in the aire on Long Island New York and afford a place there (Consumer stuff is cheap and oh so available!) it's close to so much great stuff (including the good in N,Y.C.) I'd go back, but I can't breath the " crappee! " As amny people as there are, they are still about as outgoing and friendly as any I've seen anywhere (on The Island). Around here, such folk are found here and there and in pockets. much of what Walmart doesn't carry (they have a pretty sad selection really!) we can get reasonably form the Amish who began coming here about 1973. They have made so many abandoned and unproductive places viable again it's astounding. They are old order so have a tough time living amongst " The English " with cell phones and stuff. They are not perfect, but ....... Any way, thanks again for getting in touch1 Bill > From: grasshopperx_10 <woody1014@...> > Subject: Re: Hello! > neck pain > Date: Saturday, January 9, 2010, 10:35 AM > > > Hey welcome here. Just wanted to tell you i am from MAINE. > Thats pretty bad. Get this its so rural that the nearest > walmart to this house is one hour away. All that is here is > trees,snow, bugs.I'm about two hours from cananda.welcome to > the board cindy > > > > HI ALL, > > > > I am located in the Styx of far Northern New York > State where " the natives " all seem to complain that the rest > of the world doesn't know we are here. Since I'm a refuge > from the rest of the world, I keep begging, " Please don't > tell anyone. The area will be ruined, if " discovered! " > > > > Um I am north of Albany, Syracuse, Watertown, etc. The > nearest village of any consequence is Potsdam. If I go 1/2 > hour Northwest, I will be able to see across the St Lawrence > River into Canada. We tend to forget it is a different > nation around here. I'm about an hour from Ottawa, Canada's > Capital and 2 1/2 hours from Montreal. The weather here is > cold, but is seldom below -20 or so F anymore (-40 used to > be common.). I know we are far from alone in that > department. The great thing here is being far enough north > so the winds off Lake Ontario seldom blow the " Uge " (credit > to Fucillo - if you don't know him, look him up - a > good source of laughs with his car ads (amounts of snow they > get in the area off the lake up our way. We don't have to > shovel the cold. I spent about 40 years in and around the > " snow belt " and 30 going places through, or in middle of it, > so I really appreciate more moderate snowfall! > > > > I have " Arthur " (Osteo) from the tip of my toes to the > base of my skull (possibly in my " so called " brain). > However, were it not for 16 plus years dealing with the > effects of Spinal Stenosis, I'd be almost " home free. " > > > > It constantly amazes me that there are so many, even > in our sparsely populated area with really debilitating back > problems (makes me almost forget all about my neck which > started in 1976 (age 33) who will talk about it " all day and > all night, " but have shown no interest when I've tried to > get a " Back User's Group " started. As we all know, > collectively, even those in " my " area know far more about > what it takes to try and get help for and live with a " bad > back " than almost any Doc, or other practitioner! > > > > So much of what we need to know, is practical (like > the 3 1/2 years I " lived " on the couch - could not sit in > most chairs, stand long or walk much after an incomplete > emergency surgery. Just " comparing notes " informally can be > a great help. > > > > Most I know with back, neck and related problems are > blessed with good to excellent senses of humor. It is far > better to laugh than cry! Laughter may not, in fact be the > " beat medicine. " but it is, most often (for those I know) > the biggest help in living with this " stuff. " I say that > even though I'm blessed with a lady who threw in with me > when I was " OK " and who has taken all that goes with living > with a bad back with me " attached " in stride. I've seen > medical problems destroy enough couples and families to know > I really " struck gold! " But she is not a bubbly, or goofy > type that is always laughing, so we find that where we can. > My humor is so dry many don't realize when I'm joking, so it > really helps being around people who are totally 'unsane! " > > > > My real interests in life are too many and too varied > for me to pursue most as I'd wish, even, if I had no > back/neck/foot problems. I'm defined more by my love of > " cars, " motor sport and devotion to the cause of Driver and > Highway traffic safety than anything else, but dogs ( " All > > Creatures Great and Small " ), travel, music, working > with my hands and brain and trying to get a photograph now > and then (I take a lot of pics, but get few photographs!) > are all close behind. I even like some humans (example om my > " homor " ), but prefer small groups or one or two at a time! > > > > I could complain that living where we are makes > finding help more difficult, but, from what I've seen, > having lots of Medical facilities and practitioners is often > no better than having a long stretch of road with every kind > of car known available. It's so seldom that we find anyone > who is honest and competent and cares! Getting to a Doc, > Pain Facility, etc can be really daunting and, if there is > any help when we do get there, it comes as a pleasant > surprise to me! I don't care how great their reputations > are, I have found all seriously wanting, even those where I > did benefit greatly! > > > > Having a truly excellent, caring, compassionate, > Family Doc (with unconventional, as well as the typical > " training " an outlook) is truly a all to rare a blessing in > this " day and age. " I've bee with him since the fall of 1994 > (shortly after the Spinal Stenosis was " found " ). Im' sure > many can top the 4 1/2 month ordeal I lived through seeking > help once the Stenosis literally " stopped me in my tracks. " > It was/is a classic case, yet almost all I sought help from > were clueless - didn't even try to refer me to anyone who > might know something! It was as obvious as a car failing to > start with the hood up and the battery missing! This sort of > thing happens far, far ,far too often. > > > > I have a younger friend (now about 46). > > who was felled by a massive Stroke just about 7 years > ago. I crack him up every time I say, " we know SO MUCH MORE > (shouting intended!) than we did 5 years ago! He sure makes > me count my blessings and he is far from totally useless, > but can't work, etc! > > > > I am tired of thinking about this so it's well pas > time to end this. I do hope I can find some help here and, > possibly, provide some kind to some others. I got a computer > to find help for " Ye Ole Back, " but, so far, it's really > only helped my head (a great deal). That makes it worth the > cost many times over. If I weren't so inept with it....... > But I have no kids to teach me. When I got my first in 2003, > my neice (3rd year college at the time) thought she could > teach me all I needed to know in 3 hours! > > She grew up with PCs as they were were " growing up. " > " Nuff said. " > > > > All the best > > > > Bill - NY Ohhhhh, I hope I caught > most of the " type O's! " > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 welcome to the group, be prepared to learn a lot and meet some great, very caring people here. i hail  from the beautiful columbia river gorge, wa pop 200, we do not even have our own zip code and share one with a town 6 miles away, walmart 20 miles in oregon over toll bridge, super walmart 45 miles in oregon over toll bridge, take care, wyld From: grasshopperx_10 <woody1014@...> Subject: Re: Hello! neck pain Date: Saturday, January 9, 2010, 7:35 AM  Hey welcome here. Just wanted to tell you i am from MAINE. Thats pretty bad. Get this its so rural that the nearest walmart to this house is one hour away. All that is here is trees,snow, bugs.I'm about two hours from cananda.welcome to the board cindy > > HI ALL, > > I am located in the Styx of far Northern New York State where " the natives " all seem to complain that the rest of the world doesn't know we are here. Since I'm a refuge from the rest of the world, I keep begging, " Please don't tell anyone. The area will be ruined, if " discovered! " > > Um I am north of Albany, Syracuse, Watertown, etc. The nearest village of any consequence is Potsdam. If I go 1/2 hour Northwest, I will be able to see across the St Lawrence River into Canada. We tend to forget it is a different nation around here. I'm about an hour from Ottawa, Canada's Capital and 2 1/2 hours from Montreal. The weather here is cold, but is seldom below -20 or so F anymore (-40 used to be common.). I know we are far from alone in that department. The great thing here is being far enough north so the winds off Lake Ontario seldom blow the " Uge " (credit to Fucillo - if you don't know him, look him up - a good source of laughs with his car ads (amounts of snow they get in the area off the lake up our way. We don't have to shovel the cold. I spent about 40 years in and around the " snow belt " and 30 going places through, or in middle of it, so I really appreciate more moderate snowfall! > > I have " Arthur " (Osteo) from the tip of my toes to the base of my skull (possibly in my " so called " brain). However, were it not for 16 plus years dealing with the effects of Spinal Stenosis, I'd be almost " home free. " > > It constantly amazes me that there are so many, even in our sparsely populated area with really debilitating back problems (makes me almost forget all about my neck which started in 1976 (age 33) who will talk about it " all day and all night, " but have shown no interest when I've tried to get a " Back User's Group " started. As we all know, collectively, even those in " my " area know far more about what it takes to try and get help for and live with a " bad back " than almost any Doc, or other practitioner! > > So much of what we need to know, is practical (like the 3 1/2 years I " lived " on the couch - could not sit in most chairs, stand long or walk much after an incomplete emergency surgery. Just " comparing notes " informally can be a great help. > > Most I know with back, neck and related problems are blessed with good to excellent senses of humor. It is far better to laugh than cry! Laughter may not, in fact be the " beat medicine. " but it is, most often (for those I know) the biggest help in living with this " stuff. " I say that even though I'm blessed with a lady who threw in with me when I was " OK " and who has taken all that goes with living with a bad back with me " attached " in stride. I've seen medical problems destroy enough couples and families to know I really " struck gold! " But she is not a bubbly, or goofy type that is always laughing, so we find that where we can. My humor is so dry many don't realize when I'm joking, so it really helps being around people who are totally 'unsane! " > > My real interests in life are too many and too varied for me to pursue most as I'd wish, even, if I had no back/neck/foot problems. I'm defined more by my love of " cars, " motor sport and devotion to the cause of Driver and Highway traffic safety than anything else, but dogs ( " All > Creatures Great and Small " ), travel, music, working with my hands and brain and trying to get a photograph now and then (I take a lot of pics, but get few photographs! ) are all close behind. I even like some humans (example om my " homor " ), but prefer small groups or one or two at a time! > > I could complain that living where we are makes finding help more difficult, but, from what I've seen, having lots of Medical facilities and practitioners is often no better than having a long stretch of road with every kind of car known available. It's so seldom that we find anyone who is honest and competent and cares! Getting to a Doc, Pain Facility, etc can be really daunting and, if there is any help when we do get there, it comes as a pleasant surprise to me! I don't care how great their reputations are, I have found all seriously wanting, even those where I did benefit greatly! > > Having a truly excellent, caring, compassionate, Family Doc (with unconventional, as well as the typical " training "  an outlook) is truly a all to rare a blessing in this " day and age. " I've bee with him since the fall of 1994 (shortly after the Spinal Stenosis was " found " ). Im' sure many can top the 4 1/2 month ordeal I lived through seeking help once the Stenosis literally " stopped me in my tracks. " It was/is a classic case, yet almost all I sought help from were clueless - didn't even try to refer me to anyone who might know something! It was as obvious as a car failing to start with the hood up and the battery missing! This sort of thing happens far, far ,far too often. > > I have a younger friend (now about 46). > who was felled by a massive Stroke just about 7 years ago. I crack him up every time I say, " we know SO MUCH MORE (shouting intended!) than we did 5 years ago! He sure makes me count my blessings and he is far from totally useless, but can't work, etc!   > > I am tired of thinking about this so it's well pas time to end this. I do hope I can find some help here and, possibly, provide some kind to some others. I got a computer to find help for " Ye Ole Back, " but, so far, it's really only helped my head (a great deal). That makes it worth the cost many times over. If I weren't so inept with it....... But I have no kids to teach me. When I got my first in 2003, my neice (3rd year college at the time) thought she could teach me all I needed to know in 3 hours! > She grew up with PCs as they were were " growing up. " " Nuff said. " > > All the best > > Bill - NY       Ohhhhh, I hope I caught most of the " type O's! " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Thank you! I gonna have a time keeping people and places straight, but that's only because so many belong to this group from so many places and that is very good for all concerned! I've been contacted by someone from Maine (my wife's favorite place - I've been able to get there a few times and really did enjoy it. I have a soft spot for it, as my folks eloped and were married there in 1931, though I didn't show up till WWII. I also have wonderful memories of my 1977 X country trip (12,400 mi - the " scenic route to CA and back) where I headed the suggestion of someone in Davenport WA and took the road to Nevada down through Pasco, Walla Wall, Pendleton OR, Pilor Rock OR and into Winemucca. It was so hot (no AC) I stopped till the sun was low (early August) and smelled my way though the area where the Snake and Columbia Rivers converge. IO saw a sign somewhere denoting the 45th Parallel and got all excited. After I got home, I realized it runs through the St Lawrence R just about at Ogdesnburg, N.Y. which was then 7+ miles from my home. We here think we are far north, but I'd driven a day south to get down from northern Idaho to it then! I had never felt so wonderful before, as I did going down through the mountains to Burns OR and I have never felt as good sice. I made sure to saver the " moment " just as I relish the times I can sit and, especially, move about without too much difficulty! When asked about my level of pain I always have a tough time, as I really never got much below what I guess is a 2 (at least from the time was about 5). I do know a 10, as I had a kidney Stone in late 1990 (One is enough thank you. A medication - not for pain - likely contributed to or caused it). I have been blessed not to have another - so far. But when we live with it all the time, what we consider " normal " and can function well with is a good bit higher than those who are lucky enough not to be afflicted can comprehend. The best Podiatrist (I was born with " expensive feet!) I ever met became one, becsue he had very bad feet. He was the only one of many I've gone to since 1962 that " got it! " Paint is that way! When I meet someone with back problems and mention mine there is an instant connection. I see a change in their eyes. We often speak and understand the same language. The only one's I've met who were not able to laugh were, simply, suffering too much at the time! There are lots of jokes and nasty remarks about one Neurosurgeon's futile attempt to cover his bald head by winding his hair around like a Turban, or is it tur bine? I might ad that, far from feeling sorry for myself fro not having been able to travel much since late 2001, I am so greatful for the times I was able to and still look forward to find ways to do it once again. It is the most refreshing thing I can do, though it is very hard work the way I do it (did it)! Best ---- Bill > > > From: grasshopperx_10 <woody1014@...> > Subject: Re: Hello! > neck pain > Date: Saturday, January 9, 2010, 7:35 AM > > > > > > > > > Hey welcome here. Just wanted to tell you i am from MAINE. > Thats pretty bad. Get this its so rural that the nearest > walmart to this house is one hour away. All that is here is > trees,snow, bugs.I'm about two hours from cananda.welcome to > the board cindy > > > > HI ALL, > > > > I am located in the Styx of far Northern New York > State where " the natives " all seem to complain that the rest > of the world doesn't know we are here. Since I'm a refuge > from the rest of the world, I keep begging, " Please don't > tell anyone. The area will be ruined, if " discovered! " > > > > Um I am north of Albany, Syracuse, Watertown, etc. The > nearest village of any consequence is Potsdam. If I go 1/2 > hour Northwest, I will be able to see across the St Lawrence > River into Canada. We tend to forget it is a different > nation around here. I'm about an hour from Ottawa, Canada's > Capital and 2 1/2 hours from Montreal. The weather here is > cold, but is seldom below -20 or so F anymore (-40 used to > be common.). I know we are far from alone in that > department. The great thing here is being far enough north > so the winds off Lake Ontario seldom blow the " Uge " (credit > to Fucillo - if you don't know him, look him up - a > good source of laughs with his car ads (amounts of snow they > get in the area off the lake up our way. We don't have to > shovel the cold. I spent about 40 years in and around the > " snow belt " and 30 going places through, or in middle of it, > so I really appreciate more moderate snowfall! > > > > I have " Arthur " (Osteo) from the tip of my toes to the > base of my skull (possibly in my " so called " brain). > However, were it not for 16 plus years dealing with the > effects of Spinal Stenosis, I'd be almost " home free. " > > > > It constantly amazes me that there are so many, even > in our sparsely populated area with really debilitating back > problems (makes me almost forget all about my neck which > started in 1976 (age 33) who will talk about it " all day and > all night, " but have shown no interest when I've tried to > get a " Back User's Group " started. As we all know, > collectively, even those in " my " area know far more about > what it takes to try and get help for and live with a " bad > back " than almost any Doc, or other practitioner! > > > > So much of what we need to know, is practical (like > the 3 1/2 years I " lived " on the couch - could not sit in > most chairs, stand long or walk much after an incomplete > emergency surgery. Just " comparing notes " informally can be > a great help. > > > > Most I know with back, neck and related problems are > blessed with good to excellent senses of humor. It is far > better to laugh than cry! Laughter may not, in fact be the > " beat medicine. " but it is, most often (for those I know) > the biggest help in living with this " stuff. " I say that > even though I'm blessed with a lady who threw in with me > when I was " OK " and who has taken all that goes with living > with a bad back with me " attached " in stride. I've seen > medical problems destroy enough couples and families to know > I really " struck gold! " But she is not a bubbly, or goofy > type that is always laughing, so we find that where we can. > My humor is so dry many don't realize when I'm joking, so it > really helps being around people who are totally 'unsane! " > > > > My real interests in life are too many and too varied > for me to pursue most as I'd wish, even, if I had no > back/neck/foot problems. I'm defined more by my love of > " cars, " motor sport and devotion to the cause of Driver and > Highway traffic safety than anything else, but dogs ( " All > > Creatures Great and Small " ), travel, music, working > with my hands and brain and trying to get a photograph now > and then (I take a lot of pics, but get few photographs! ) > are all close behind. I even like some humans (example om my > " homor " ), but prefer small groups or one or two at a time! > > > > I could complain that living where we are makes > finding help more difficult, but, from what I've seen, > having lots of Medical facilities and practitioners is often > no better than having a long stretch of road with every kind > of car known available. It's so seldom that we find anyone > who is honest and competent and cares! Getting to a Doc, > Pain Facility, etc can be really daunting and, if there is > any help when we do get there, it comes as a pleasant > surprise to me! I don't care how great their reputations > are, I have found all seriously wanting, even those where I > did benefit greatly! > > > > Having a truly excellent, caring, compassionate, > Family Doc (with unconventional, as well as the typical > " training " an outlook) is truly a all to rare a blessing in > this " day and age. " I've bee with him since the fall of 1994 > (shortly after the Spinal Stenosis was " found " ). Im' sure > many can top the 4 1/2 month ordeal I lived through seeking > help once the Stenosis literally " stopped me in my tracks. " > It was/is a classic case, yet almost all I sought help from > were clueless - didn't even try to refer me to anyone who > might know something! It was as obvious as a car failing to > start with the hood up and the battery missing! This sort of > thing happens far, far ,far too often. > > > > I have a younger friend (now about 46). > > who was felled by a massive Stroke just about 7 years > ago. I crack him up every time I say, " we know SO MUCH MORE > (shouting intended!) than we did 5 years ago! He sure makes > me count my blessings and he is far from totally useless, > but can't work, etc! > > > > I am tired of thinking about this so it's well pas > time to end this. I do hope I can find some help here and, > possibly, provide some kind to some others. I got a computer > to find help for " Ye Ole Back, " but, so far, it's really > only helped my head (a great deal). That makes it worth the > cost many times over. If I weren't so inept with it....... > But I have no kids to teach me. When I got my first in 2003, > my neice (3rd year college at the time) thought she could > teach me all I needed to know in 3 hours! > > She grew up with PCs as they were were " growing up. " > " Nuff said. " > > > > All the best > > > > Bill - NY Ohhhhh, I hope I caught > most of the " type O's! " > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 I consider myself a native of Woodstock (Yeah that one!), but left years before the Rock " Concert. " my dad was an artist )stone Lithographer) so my folks lived their for 20 years before the need for food forced the move! You don't have to answer (or to the group), but I'd be very interested in know the identity of your " little Colony. " We have pockets in our area, but it's not like Woodstock used to be when I was small and we knew and met and mingled with those who were practitioners of, essentially, every art form. Willie said he was about 20 before finding out that " everyone wasn't a little bit crazy. " Well I was a lot younger when I fond out and it was a real hard comedown! My folks never did adjust to life in a " normal " type of place!!! It's nothing to brag about, as it was the nature of the place, but by age 4 I " knew " " successful " writers, painters, musicians, actors, etc. I thought " everybody " was like that and didn't realize our friend the local Plumber wasn't (technically) an artist as well ( " Crazy " he was.). Actually a good plumber is an artist, but not recognized. In the last 40 years I discovered that a (former) coworker was married to a cousin of a world famous Belgian racing driver, a college teacher from Indiana named Hanks was related to the Hanks in President Lincoln's life and to the winner of the 1957 Indy 500. I knew another lady for 15 year or so before she mentioned that her " Grandmother Drake " was a direct descendant of Sir Francis Drake (as was she). It explained why she was " never " home! A very close friend of my dad was directly descended from the firs Secretary to The King Of Prussia (as in Germany). I also learned that many of those we see every day are every bit as extraordinary as those whose occupation/avocation sets them apart and may make them famous. As a 3 year old I had a young Carpenter's Helper stop and play with me with a gadget someone had given me for my sand pile. He was supposed to be getting water from our hand pump. We knew he was an " actor, " but " everybody " seemed to be something other than what they were doing to stay fed. He was a gentle, happy guy. In the mid 1960's he " won " an for a role that (supposedly) no one else would take. I had nothing to do with that or any of the other connections I've mentioned. What I am proud of is the variety of types of individual who've accepted me and treat me with respect, from true intellectuals, those in the " Auto Racing Fraternity " I knew (including a farmer from Michigan who went to the big time and won the Indy 500 and lots of other important events/Championships twice and was known as one of the very best in the by the best in the world and a " nut " from Maine who has remains very competitive at age 69 in as tough a type of car to drive as there is (won his first main event in 1957 after a couple years of trying), the people who build and fix things, those who design and even to a hard living auto mechanic. Since I was 3, I've always gravitated toward those who work with their hands and brains for a living (after seeing a fellow make a part for my dad's old car (earlier 1946) out of leather so it would run a little bit longer! He later sold his Service Station and opened a Frame Shop (a total surprise to me). and the " everyday heroes all around us. It makes me feel very lucky and very rich! refused to send anything from here last night due to " suspicious activity " - will see, if it goes now. Best Bill > From: Ann Wood Fuller <gatorma1@...> > Subject: Re: Hello! > neck pain > Date: Friday, January 8, 2010, 12:40 PM > Welcome Bill, > I also live remote (near by town only has 600) and its an > artist community; I am the resident writer and classicist > musician and at my age dealing with stenosis and a fractured > disc at c-6-7 and in PT and take mediation to get me through > the day, I am also dealijg with a combo of FIBRO and PMR > I know that you will find good suport here in our group > Be welcome! > Annie > > A poet is, after all, to see > > > > > ________________________________ > From: william moss <detalor@...> > neck pain > Sent: Fri, January 8, 2010 12:13:00 PM > Subject: Hello! > > HI ALL, > > I am located in the Styx of far Northern New York State > where " the natives " all seem to complain that the rest of > the world doesn't know we are here. Since I'm a refuge from > the rest of the world, I keep begging, " Please don't tell > anyone. The area will be ruined, if " discovered! " > > Um I am north of Albany, Syracuse, Watertown, etc. The > nearest village of any consequence is Potsdam. If I go 1/2 > hour Northwest, I will be able to see across the St Lawrence > River into Canada. We tend to forget it is a different > nation around here. I'm about an hour from Ottawa, Canada's > Capital and 2 1/2 hours from Montreal. The weather here is > cold, but is seldom below -20 or so F anymore (-40 used to > be common.). I know we are far from alone in that > department. The great thing here is being far enough north > so the winds off Lake Ontario seldom blow the " Uge " (credit > to Fucillo - if you don't know him, look him up - a > good source of laughs with his car ads (amounts of snow they > get in the area off the lake up our way. We don't have to > shovel the cold. I spent about 40 years in and around the > " snow belt " and 30 going places through, or in middle of it, > so I really appreciate more moderate snowfall! > > I have " Arthur " (Osteo) from the tip of my toes to the base > of my skull (possibly in my " so called " brain). However, > were it not for 16 plus years dealing with the effects of > Spinal Stenosis, I'd be almost " home free. " > > It constantly amazes me that there are so many, even in our > sparsely populated area with really debilitating back > problems (makes me almost forget all about my neck which > started in 1976 (age 33) who will talk about it " all day and > all night, " but have shown no interest when I've tried to > get a " Back User's Group " started. As we all know, > collectively, even those in " my " area know far more about > what it takes to try and get help for and live with a " bad > back " than almost any Doc, or other practitioner! > > So much of what we need to know, is practical (like the 3 > 1/2 years I " lived " on the couch - could not sit in most > chairs, stand long or walk much after an incomplete > emergency surgery. Just " comparing notes " informally can be > a great help. > > Most I know with back, neck and related problems are > blessed with good to excellent senses of humor. It is far > better to laugh than cry! Laughter may not, in fact be the > " beat medicine. " but it is, most often (for those I know) > the biggest help in living with this " stuff. " I say that > even though I'm blessed with a lady who threw in with me > when I was " OK " and who has taken all that goes with living > with a bad back with me " attached " in stride. I've seen > medical problems destroy enough couples and families to know > I really " struck gold! " But she is not a bubbly, or goofy > type that is always laughing, so we find that where we can. > My humor is so dry many don't realize when I'm joking, so it > really helps being around people who are totally 'unsane! " > > My real interests in life are too many and too varied for > me to pursue most as I'd wish, even, if I had no > back/neck/foot problems. I'm defined more by my love of > " cars, " motor sport and devotion to the cause of Driver and > Highway traffic safety than anything else, but dogs ( " All > Creatures Great and Small " ), travel, music, working with my > hands and brain and trying to get a photograph now and then > (I take a lot of pics, but get few photographs!) are all > close behind. I even like some humans (example om my > " homor " ), but prefer small groups or one or two at a time! > > I could complain that living where we are makes finding > help more difficult, but, from what I've seen, having lots > of Medical facilities and practitioners is often no better > than having a long stretch of road with every kind of car > known available. It's so seldom that we find anyone who is > honest and competent and cares! Getting to a Doc, Pain > Facility, etc can be really daunting and, if there is any > help when we do get there, it comes as a pleasant surprise > to me! I don't care how great their reputations are, I have > found all seriously wanting, even those where I did benefit > greatly! > > Having a truly excellent, caring, compassionate, Family Doc > (with unconventional, as well as the typical " training " an > outlook) is truly a all to rare a blessing in this " day and > age. " I've bee with him since the fall of 1994 (shortly > after the Spinal Stenosis was " found " ). Im' sure many can > top the 4 1/2 month ordeal I lived through seeking help once > the Stenosis literally " stopped me in my tracks. " It was/is > a classic case, yet almost all I sought help from were > clueless - didn't even try to refer me to anyone who might > know something! It was as obvious as a car failing to start > with the hood up and the battery missing! This sort of thing > happens far, far ,far too often. > > I have a younger friend (now about 46). > who was felled by a massive Stroke just about 7 years ago. > I crack him up every time I say, " we know SO MUCH MORE > (shouting intended!) than we did 5 years ago! He sure makes > me count my blessings and he is far from totally useless, > but can't work, etc! > > I am tired of thinking about this so it's well pas time to > end this. I do hope I can find some help here and, possibly, > provide some kind to some others. I got a computer to find > help for " Ye Ole Back, " but, so far, it's really only helped > my head (a great deal). That makes it worth the cost many > times over. If I weren't so inept with it....... But I have > no kids to teach me. When I got my first in 2003, my neice > (3rd year college at the time) thought she could teach me > all I needed to know in 3 hours! > She grew up with PCs as they were were " growing up. " " Nuff > said. " > > All the best > > Bill - NY Ohhhhh, I hope I caught most of > the " type O's! " > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 Hello and welcome to the group. The 8 mm of asymmetry means your son is mild. (0-3 is usually normal and 3-6 very mild). The 91% means he has some brachy too (flat across the back with increased head width). I imagine you can expect your docband to improve both of these numbers. Particularly because you're starting at a young age. My daughter wore a starband a few years ago for brachy. I love the " fixin my flat " theme. -christine sydney, 4 yrs, starband grad > > I was really happy to find this group. My son, Riley, was fitted for his doc band on 01/08/10 at 4.5 months old. So far, he's adjusting to it really well. Thanks to everyone for posting your experiences...it's been really helpful to be able to read through previous messages...and to know that we're not going through this alone. I posted some pictures of Riley in the Our Plagio Babies Q-R folder...He's listed as Riley S. A quick question - I'm trying to figure out how to properly read the numbers and percentages on his head shape. Can someone point me in the direction of a post and/or file with the data? Riley's initial measurements at CT are below: > > Cranial Width: 124mm > Cranial Length: 136mm > Cephalic Index: 91.1 with +3.4 standard deviation > > Cranial Vault Asymmetry: 8mm > Mid-Face Asymmetry: 3mm > Skull-Base Asymmetry: 2mm > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 Welcome to the group. Both of those numbers (the plagio and brachy numbers) are not too bad. You should have no problem getting into the normal range. The plagio number is univesaly accepted as mil. The brachy number would be considered severe by some and mild by others. In any case, it's best to get that brachy number out of the 90's and I'm sure that will be easily accomplished. With those numbers, I'm also guessing that you'll only need one band. Good luck and let us know how it goes and if you have questions. , mom to , 28 months STARband grad May 2009 at 20.5 months CST and Chiro land Hello! I was really happy to find this group. My son, Riley, was fitted for his doc band on 01/08/10 at 4.5 months old. So far, he's adjusting to it really well. Thanks to everyone for posting your experiences...it's been really helpful to be able to read through previous messages...and to know that we're not going through this alone. I posted some pictures of Riley in the Our Plagio Babies Q-R folder...He's listed as Riley S. A quick question - I'm trying to figure out how to properly read the numbers and percentages on his head shape. Can someone point me in the direction of a post and/or file with the data? Riley's initial measurements at CT are below: Cranial Width: 124mmCranial Length: 136mmCephalic Index: 91.1 with +3.4 standard deviation Cranial Vault Asymmetry: 8mmMid-Face Asymmetry: 3mmSkull-Base Asymmetry: 2mm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 Thanks for the feedback. I personally don't think that his head looks too bad, but I'm pretty partial. I was a little concerned because the technician at CT labeled his brachy as " severe " . We're seeing some correction already after 10 days, so we're hopeful! > > > > I was really happy to find this group. My son, Riley, was fitted for his doc band on 01/08/10 at 4.5 months old. So far, he's adjusting to it really well. Thanks to everyone for posting your experiences...it's been really helpful to be able to read through previous messages...and to know that we're not going through this alone. I posted some pictures of Riley in the Our Plagio Babies Q-R folder...He's listed as Riley S. A quick question - I'm trying to figure out how to properly read the numbers and percentages on his head shape. Can someone point me in the direction of a post and/or file with the data? Riley's initial measurements at CT are below: > > > > Cranial Width: 124mm > > Cranial Length: 136mm > > Cephalic Index: 91.1 with +3.4 standard deviation > > > > Cranial Vault Asymmetry: 8mm > > Mid-Face Asymmetry: 3mm > > Skull-Base Asymmetry: 2mm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 Thanks for the feedback. I personally don't think that his head looks too bad, but I'm pretty partial. I was a little concerned because the technician at CT labeled his brachy as " severe " . We're seeing some correction already after 10 days, so we're hopeful! They also noted that he'll probably need two bands, so I'm expecting that and hoping for only one. My goal right now is to deal with one day at a time...I'm way to tired to take on the world like I did before I became a mommy! Thanks for sharing! > > > > Welcome to the group. Both of those numbers (the plagio and brachy numbers) are not too bad. You should have no problem getting into the normal range. The plagio number is univesal y accepted as mil. The brachy number would be considered severe by some and mild by others. In any case, it's best to get that brachy number out of the 90's and I'm sure that will be easily accomplished. With those numbers, I'm also guessing that you'll only need one band. > > Good luck and let us know how it goes and if you have questions. > > > > , mom to , 28 months > > STARband grad May 2009 at 20.5 months > > CST and Chiro > > land > > > > > > Â Â Â Â Â Â Â > > > > Hello! > > Â > > > > > I was really happy to find this group. My son, Riley, was fitted for his doc band on 01/08/10 at 4.5 months old. So far, he's adjusting to it really well. Thanks to everyone for posting your experiences...it's been really helpful to be able to read through previous messages...and to know that we're not going through this alone. I posted some pictures of Riley in the Our Plagio Babies Q-R folder...He's listed as Riley S. A quick question - I'm trying to figure out how to properly read the numbers and percentages on his head shape. Can someone point me in the direction of a post and/or file with the data? Riley's initial measurements at CT are below: > > Cranial Width: 124mm > Cranial Length: 136mm > Cephalic Index: 91.1 with +3.4 standard deviation > > Cranial Vault Asymmetry: 8mm > Mid-Face Asymmetry: 3mm > Skull-Base Asymmetry: 2mm > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi Rhiannon, it is hard to educate people. I got diagnosed a year ago and although I am only 37 I get the whole " well its normal to have aches and pains as you get older "  I even get it from my hubbie. I am still trying to find a right combo of meds myself and from what I heard thats the key is finding the right combo that works for you. sometimes you even have remissions so dont lose hope, lots of people lead normal lives or close to normal. I have finally convinced my husband to stop screwing on lids so tight Kim ________________________________ From: rhionnon555 <rhionnon555@...> Sent: Thu, January 21, 2010 2:04:36 PM Subject: [ ] hello!  Hello all! My name is Rhiannon.I am 27. I have just (in November 09) been diagnosed with RA. I'm still learning how to deal with it. I've been having symptoms since April 09, but I guess I was hoping they would just disappear. no luck. I'm on medication, which has really helped with morning stiffness, but i'm still in pain. I am also extremely tired all the time. does any of this get better? will I always be in pain? I'm a little scared about what the future holds for me. I just finished training to become a phelbotomist, and now I'm worried that i won't be able to do it! I have a hard time doing the things i used to love - draw, paint, yoga, knit, embroider, cook - and it's really frustrating. To make it worse, no one seems to believe me when I tell them I have RA. I'm " too young " or " don't look sick " or " just want attention " . anyway, sorry to get ranty. I wanted to say hi to everyone and if anyone has tips, please drop me a line. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hello... I am all too familiar with the you dont look sick or you dont look disabled....especially when utilizing handicapped parking with people running after me saying nasty stuff that i am a fraud.....stupid people......anyway..... 1) the fatigue.....I have good days and bad days...rainy weather makes me tired.... 2) if you are still in pain and its been longer then six months.....I would suggest you seeking the care of a pain management doc.....they can do wonders.... Good luck to you...if your not happy with the meds your on now....communicate that with your doc...I tried probably 20 drugs till i found one that helped that the side effects were minimal.... Hugs Deb RN  Debra ________________________________ From: rhionnon555 <rhionnon555@...> Sent: Thu, January 21, 2010 1:04:36 PM Subject: [ ] hello!  Hello all! My name is Rhiannon.I am 27. I have just (in November 09) been diagnosed with RA. I'm still learning how to deal with it. I've been having symptoms since April 09, but I guess I was hoping they would just disappear. no luck. I'm on medication, which has really helped with morning stiffness, but i'm still in pain. I am also extremely tired all the time. does any of this get better? will I always be in pain? I'm a little scared about what the future holds for me. I just finished training to become a phelbotomist, and now I'm worried that i won't be able to do it! I have a hard time doing the things i used to love - draw, paint, yoga, knit, embroider, cook - and it's really frustrating. To make it worse, no one seems to believe me when I tell them I have RA. I'm " too young " or " don't look sick " or " just want attention " . anyway, sorry to get ranty. I wanted to say hi to everyone and if anyone has tips, please drop me a line. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Rhiannon, If your rheumatologist can figure out the right cocktail of meds for you, then, yes, there is life after RA. The thinking today is that RA should be treated aggressively from the beginning, before joint damage can occur. What medication are you presently on? Many are started on methotrexate at first, but some are started on a milder DMARD like plaquenil. Tell your doctor if you are still having pain. Maybe something else needs to be added. To help other people understand what you're going through, let them read " The Spoon Theory. " You'll find it here: http://tinyurl.com/l35ob7 Good luck! Sue On Jan 21, 2010, at 2:04 PM, rhionnon555 wrote: > Hello all! > > My name is Rhiannon.I am 27. > I have just (in November 09) been diagnosed with RA. > > I'm still learning how to deal with it. I've been having symptoms > since April 09, but I guess I was hoping they would just disappear. > no luck. > I'm on medication, which has really helped with morning stiffness, > but i'm still in pain. I am also extremely tired all the time. does > any of this get better? will I always be in pain? > > I'm a little scared about what the future holds for me. > I just finished training to become a phelbotomist, and now I'm > worried that i won't be able to do it! > I have a hard time doing the things i used to love - draw, paint, > yoga, knit, embroider, cook - and it's really frustrating. > > To make it worse, no one seems to believe me when I tell them I have > RA. I'm " too young " or " don't look sick " or " just want attention " . > > anyway, sorry to get ranty. I wanted to say hi to everyone and if > anyone has tips, please drop me a line. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi Rhiannon:      I was sorry to read that RA reared its ugly head to you. I have had it 5 1/2 years now, and knew nothing about it. I went on line to check it out, got so damned scared and never looked it up again. It is a scarey disease, and the only people who understand this disease, and what it does to us 24/7 is all the wonderful people here in our support group. I thank God everyday that I found this support group.     I was hit very hard in my feet,, ankles, hands, wrists, etc. But the hardest hit were my feet and ankles. I have been on Prednisone everyday for 5 1/2 years, I also inject. myself 1 X a week with Methatrexate, and take the maximum doses of Placquenil and Sulfasalazine daily. These combo. of meds. is my " cocktail " that has worked wonderfully for me. I have been in a medicine induced remission for the last year and a half. I have not had any flares or any pain at all. It is truly a miracle, and how long this lasts, I do not know. I am just grateful to feel good.     RA did change my life, and I had to learn to do things differently. It was a re-training for me. I only do a few things a day, where as before, I did everything each day. I can only handle so much so I had to learn to pace myself. This was very hard for me to do, but I have learned to do it. I am just happy I can do things. I don't wash my floors on my hands and knee's anymore. I am happy using a mop, just as long as I can still wash my floors. I am an artist and I used to paint all day long.  Now I just do it for a short time as I get so stiff I can hardly get up from my chair. I am just happy to paint, even if it is a short time. I promised my children I would not get on a ladder or step stool ever again. I keep that promise as I have fallen and broke my hip and had it totally replaced. I have also had both knees replaced as they had Osteo. and RA in both of them. I now have 2 strong legs under me, and that feels good.      RA does make us so tired, so on my Rheumys orders, I rest each and everyday. It makes me feel better. I used to feel guilty about it, but not anymore. Our bodies work hard 24/7 fighting RA.       I hope you get out of your pain soon. Pain is very hard to take 24/7. I have several RX's for pain from my Rheumy. If I need them, I take them. When I had bad flares, she would give me Cortisone shots to help me, and they sure do work wonderfully for me. You owe it to yourself to find the best, caring Rheumy for yourself. If you don't like yours for any reason, search until you find someone who really cares about you, and is trying to help you with pain, etc. I love my Rheumy as she is so caring, loving, and so smart. If I need to call her, she always returns my call in a very timely manner. If she happens to be off, one of the other Rheumy calls me back within 15 minutes. They run a wonderful practice and they all care about their patients.      Keep the faith and don't listen to anyone who doesn't know what you are dealing with. Anyone here knows what it is like and what an impact it has made in our lives. Remember to rest and take good care of yourself. Better days are ahead.  Hugs,  Barbara From: rhionnon555 <rhionnon555@...> Subject: [ ] hello! Date: Thursday, January 21, 2010, 2:04 PM  Hello all! My name is Rhiannon.I am 27. I have just (in November 09) been diagnosed with RA. I'm still learning how to deal with it. I've been having symptoms since April 09, but I guess I was hoping they would just disappear. no luck. I'm on medication, which has really helped with morning stiffness, but i'm still in pain. I am also extremely tired all the time. does any of this get better? will I always be in pain? I'm a little scared about what the future holds for me. I just finished training to become a phelbotomist, and now I'm worried that i won't be able to do it! I have a hard time doing the things i used to love - draw, paint, yoga, knit, embroider, cook - and it's really frustrating. To make it worse, no one seems to believe me when I tell them I have RA. I'm " too young " or " don't look sick " or " just want attention " . anyway, sorry to get ranty. I wanted to say hi to everyone and if anyone has tips, please drop me a line. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi Rhiannon, I know the feeling, I am 24 years old and was diagnosed 6 months ago with sero-negative RA with positive ANA. It is really hard especially being so young because no one understands the pain and fatigue you experience and why you can't do things you use to do. You MUST find the right cocktail of meds that works for you, I am still in the process of doing this but I take Methotrexate injections every week, prednisone,plaquenil and diclofenac for the inflammation. Another MUST is a great rheumatologist that you trust and get along with well. there is also a great website i viist often called Rawarrior.com, the girl that runs it, her name is kelly and she has been so awesome to me. It has a lot of great information and a place to blog. I hope you have pain free days ahead and let me know if I can do anything to help you. Vicky > > > > > ________________________________ > From: rhionnon555 <rhionnon555@...> > > Sent: Thu, January 21, 2010 1:04:36 PM > Subject: [ ] hello! > > Â > Hello all! > > My name is Rhiannon.I am 27. > I have just (in November 09) been diagnosed with RA. > > I'm still learning how to deal with it. I've been having symptoms since April 09, but I guess I was hoping they would just disappear. no luck. > I'm on medication, which has really helped with morning stiffness, but i'm still in pain. I am also extremely tired all the time. does any of this get better? will I always be in pain? > > I'm a little scared about what the future holds for me. > I just finished training to become a phelbotomist, and now I'm worried that i won't be able to do it! > I have a hard time doing the things i used to love - draw, paint, yoga, knit, embroider, cook - and it's really frustrating. > > To make it worse, no one seems to believe me when I tell them I have RA. I'm " too young " or " don't look sick " or " just want attention " . > > anyway, sorry to get ranty. I wanted to say hi to everyone and if anyone has tips, please drop me a line. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 I find that as my daughter's mother, I am the most aware of her head and so I'm partial in the opposite direction. I tend to see her head as worse than most of the other people that I know. When CT did my consult after my daughter's STARband graduation, she classified her head as "moderate" without looking at any numbers. She had graduated with a ratio fo 92.2 percent. Their hand measurements had her come out to be 86 percent, which I believe was measurement error. The first number was obtained through a computer scan. Shortly afterward, her PT measured her head at 91.3 percent (hand measurements again). So, the 86 percent seems unlikely. I tend to classify my daughter's head as mild. Some of my friends say it just looks normal to them. I have the benefit of having spent months analyzing her head shape and so that makes me her biggest critic. It's a side effect of dealing with this problem. Hopefully, you will never get there and will always see the head as not that bad. I'm surprised that CT thinks that you will need two bands with those numbers since those numbers are better than most that I see posted. Hello! > > Â > > > > > I was really happy to find this group. My son, Riley, was fitted for his doc band on 01/08/10 at 4.5 months old. So far, he's adjusting to it really well. Thanks to everyone for posting your experiences...it's been really helpful to be able to read through previous messages...and to know that we're not going through this alone. I posted some pictures of Riley in the Our Plagio Babies Q-R folder...He's listed as Riley S. A quick question - I'm trying to figure out how to properly read the numbers and percentages on his head shape. Can someone point me in the direction of a post and/or file with the data? Riley's initial measurements at CT are below: > > Cranial Width: 124mm > Cranial Length: 136mm > Cephalic Index: 91.1 with +3.4 standard deviation > > Cranial Vault Asymmetry: 8mm > Mid-Face Asymmetry: 3mm > Skull-Base Asymmetry: 2mm> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 I spoke to both my ortho at CT and my phys therapist and her cranioplastic surgeon. They all said CT is finding about 1/4 of their kids get more than 1 band because more kids are being banded younger than in years past, which means 2 things:1 major growth spurts are being captured in the first and subsequent helmets (kida are outgrowing them more quickly since rapid growth slows after 12 mos and more so after 18 mos)And2 since band 1 is being outgrown more quickly by younger babies that still spend significant asleep and awake time in reclined and semi-reclined positions, there is more cause for concern about regression if a second band is not worn.That's all I know!Sent from my Verizon Wireless BlackBerryFrom: <melanie.watson@...>Date: Fri, 22 Jan 2010 03:18:03 +0000 (UTC)<Plagiocephaly >Subject: Re: Hello! I find that as my daughter's mother, I am the most aware of her head and so I'm partial in the opposite direction. I tend to see her head as worse than most of the other people that I know. When CT did my consult after my daughter's STARband graduation, she classified her head as "moderate" without looking at any numbers. She had graduated with a ratio fo 92.2 percent. Their hand measurements had her come out to be 86 percent, which I believe was measurement error. The first number was obtained through a computer scan. Shortly afterward, her PT measured her head at 91.3 percent (hand measurements again). So, the 86 percent seems unlikely. I tend to classify my daughter's head as mild. Some of my friends say it just looks normal to them. I have the benefit of having spent months analyzing her head shape and so that makes me her biggest critic. It's a side effect of dealing with this problem. Hopefully, you will never get there and will always see the head as not that bad. I'm surprised that CT thinks that you will need two bands with those numbers since those numbers are better than most that I see posted. Hello! > > Â > > > > > I was really happy to find this group. My son, Riley, was fitted for his doc band on 01/08/10 at 4.5 months old. So far, he's adjusting to it really well. Thanks to everyone for posting your experiences...it's been really helpful to be able to read through previous messages...and to know that we're not going through this alone. I posted some pictures of Riley in the Our Plagio Babies Q-R folder...He's listed as Riley S. A quick question - I'm trying to figure out how to properly read the numbers and percentages on his head shape. Can someone point me in the direction of a post and/or file with the data? Riley's initial measurements at CT are below: > > Cranial Width: 124mm > Cranial Length: 136mm > Cephalic Index: 91.1 with +3.4 standard deviation > > Cranial Vault Asymmetry: 8mm > Mid-Face Asymmetry: 3mm > Skull-Base Asymmetry: 2mm> Quote Link to comment Share on other sites More sharing options...
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