Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 welcome!!! SORRY I DIDNT SEE YOU HERE. What is your name? AND AGAIN YOU ARE WELCOME . my name is Connie and you will love lifelift i promise it is the best Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Life Lift and Body Flex are different in that LL uses a much more gentle breath than BF. I have tried both and I really like LL better. The plus of LL, aside from being less harsh, is the wonderful support of Rashelle Haines, who developed the program. She gives 100% of herself and is ALWAYS there to answer any questions you may have. I hope this helps. Starr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hello, Welcome to the lifelift board. Of course we are taking new members. I am sorry that your messages were missed. I see that a few people have already told you the difference between lifelift and bodyflex. Do you do bodyflex now? It seems like here. most alot of people did body flex, but now like lifelift. But, of course that could be because this is the lifelift board. LOL . I know you did not ask this, but I think if you are wondering if it would be worth buying the lifelift video. The answer would be yes. It would be. If I remember right Rashelle had a pretty good guarantee on her lifelift tape. Oh my I am sounding like a sales person. HA HA I just want to point out that unless you get the tape, you really will not be able to see the difference. Well, I should not say that. I am very visual so I need to see something done to do it. Maybe you are not the same way. :-). Well, I am kind of going on. Again welcome to the list. Sorry, I missed you the first time. Geri In a message dated 4/20/00 8:42:38 AM Central Daylight Time, ami@... writes: << was hoping for some information and support. Are you not open for new members? sad >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Ami, I'm sorry if you're feeling ignored, we surely didn't mean to make you feel that way! Last night I replied to your post about the differences between Body Flex and Life Lift, maybe you didn't see it. I'm very happy that you have found us here and are continuing to post! Yesterday was kind of a slow day on the list, and I, personally, was gone most of the day. But just incase you didn't get a chance to read the reply I sent you, let me say to you again, Welcome! And I hope to be able to read your posts often. Sincerely, Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Like many of the others have said, we are sorry that your message wasn't responded to right away. We are always welcome to new members here :-). So welcome aboard? Is your name Ami? I was curious since you didn't sign your name at the end of your e-mail. I started with Bodyflex myself and did that for about four months. I had good results with it and I did like the breathing program. I started Lifelift in February and I have been hooked ever since. Thanks to Karma and who told me about this great program! There are differences between the breathing techniques. I felt like I was hacking up a lung with Bodyflex. Lifelift is more gentler on my system. It is also slower and more controlled. You hold for a count of three before you Pah out. I find that this is better for my body since the oxygen is getting to the place of stress. (Or the place I am working on)... I have had better results with this program personally. I have a better attitude about so many things. Rashelle, the creator, is the sweetest gal in the world and she is available to answer questions. I hope this helps somewhat. Thanks for listening! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hi, This the Rashelle, and I have to tell you how sorry I am that your message was overlooked. That is highly unusual, we always welcome new members with open arms. I am usually here most days, but the past two was spent taking care of giving my car some much needed TLC after a the intense winter here in the Mountains. Everyone on our list is wonderful, helpful and they always reach out to help. I guess they are getting ready for family things with the long weekend coming up. I am certain you will be hearing from many soon. I would be happy to send you some messages that I have received recently from those who have used the other breathing programs before coming to Life Lift. Most of all I would like to extend my help to you if you need it. I admit I have been a bit overloaded trying to answer all of the mail and get the newsletter out too. I had it ready to go out when my computer froze up and I lost the final version, so I am having to redo some of it. I noticed when I turned the computer on this morning that Tami had indeed answered you, so I am grateful for that. You take good care of yourself and be assured that you are more than welcome here. We are happy to have you. Rashelle Be sure to check out all of the great specials available on my web sites. Save $30 on the Large Body Wrap package until April 30thVisit us at http://www.lifelift.com or http://www.angelmagic.com. All other web sites belong to distributors, these are my personal web sites.Join our discussion group at LifeLift-subscribe@... New To Board I'm new to this board and have posted twice. Once asking about Life Lift and similarities (if any) to Body Flex. It has been three days and I'm feeling very ignored.I was hoping for some information and support. Are you not open for new members? sad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 Sorry Ami, I guess we all expected everyone else to answer. Actually they are very similar, but LL is more gentle, and for me personally, more effective. I find Rashelles voice soothing and relaxing to listen to. It is a much gentler workout, and I think you will like it a lot. I know I do. W New To Board I'm new to this board and have posted twice. Once asking about Life Lift and similarities (if any) to Body Flex. It has been three days and I'm feeling very ignored.I was hoping for some information and support. Are you not open for new members? sad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 Please don't be sad. I can imagine how you must have felt to not get a response at all. But the people on this list really DO care for each other and you ARE one of us!!!!!!!!!! BIG ;-) I want to welcome you NOW and please know everyone here will be more than glad to help you any way they can. It sure wasn't personal that you didn't get an answer. Like someone else said, everyone probably thought someone else was answering! Truthfully I don't even remember seeing your original messages. Sometimes I flip through them so fast I delete ones I really wanted to read!!! So please know you are important to us. {{{{HUGS}}} & God bless, Bonnie **********************************************With God, ALL things are possible.********************************************** I'm new to this board and have posted twice. Once asking about Life Lift and similarities (if any) to Body Flex. It has been three days and I'm feeling very ignored.I was hoping for some information and support. Are you not open for new members? sad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 Hi Ami- Glad you are here! I've never done bodyflex, so I don't know the diferrences, but I do know that lifelift give you a new lease on life!! And, the people here on the board are just wonderful. There is so much positive energy here. You just can't go wrong with Lifelift. I even have my two kids and hubby doing the LL breathing now (and they were very happy to make fun of me in the beginning). They see the results in my body and in my attitude, so they are jumping on the band wagon too! And you will never find another creator of such a wonderful product more involved in her cyber family than Rashelle is. She is terrific and must have a passion to help us all, becuase she spends her valuable time here with us most of the time. I pray for her daily so she won't feel overwhelmed becuase we are all addicted to her vibrance and love of life!!! Welcome aboard, Cristi --- ami@... wrote: > I'm new to this board and have posted twice. Once > asking about Life > Lift and similarities (if any) to Body Flex. It has > been three days > and I'm feeling very ignored. > > I was hoping for some information and support. Are > you not open for > new members? > > sad > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2001 Report Share Posted March 12, 2001 Hi Terry, Who referred you to the neurosurgeon? Was it your ortho doc? It is most common, I think, for the problems you describe to be cared for by an orthopedist who specializes in scoliosis. I would suggest that you get a second opinion from a scoli specialist. A list of scoli specialists in your area can be found at www.srs.org, or if you let us know what area of the country you live in, we may be able to suggest some docs. Good luck. bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2001 Report Share Posted March 12, 2001 Terry, I understand your hesitation to have surgery. From your own experience you will know that Scoliosis surgery is major surgery and in adults we face a recovery period from as little as 18months to as long as 3 years. When disks and nerve related symptoms are involved, the neurosurgeon is the person to see. However, correcting flatback and pseudo-arthrosis will be the job of an orthopedic surgeon. If you ever need to have surgery, see if you can have both present- one to do the " bone " work and the other to do the " nerve/disk problems " work. I believe if this is done in every case, we will have less nerve related problems after surgery. There are certain scoliosis specialists who are more experienced with correcting flatback and " revision " surgery. There are also a lot of people on the list who've had flatback and had it corrected. They might be able to help you point you to someone more experienced in this area. Take care, Sanette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2001 Report Share Posted March 12, 2001 It sounds like the brace that I have. I have the same problems with it that you do. Also, it pops open often, and then I'm not straight. You might try making an appt. with whoever made it and have it adjusted. My orthotics dept. will make any adjustments they can. I'm wearing mine to try and get the loose screw to knit, but I don't think it's working. Good luck! in the East Bay At 02:48 PM 03/12/2001 +0000, you wrote:She has put me in a bivalve brace. It goes from just under my >breasts to below my hip area then I have a leg piece attached. It >has a hinge (thank God) so I can bend my leg, but I'm not suppose to >It also has a lock that is suppose to be locked at all times. Has >anyone ever heard of it or worn one?????? I would appreciate knowing >if anyone has. This thing is really killing me. It is made of >plastic but on me it is very heavy and I can hardly stand up in it or >walk very far. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Dear Terry, I'm a scoliosis patient and not a doctor, but it is my understanding that a pseudoarthrosis won't heal spontaneously (at least the vast majority of pseudoarthroses) - you might want to consult with a couple of other orthos about that. I had two pseudoarthroses and they were corrected surgically. Wish I could say it was a breeze but it was pretty much like the first time around. The good news is thaat you know what to expect and you know the rough period will pass. Let us know where you live - there are people from all over the States, Canada, and I'm from Italy, so we can give you names of good docs just about anywhere! In the mean time, know we're rooting for you and wish you good luck. Best, from Italy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 In a message dated 3/13/01 9:38:51 AM Central Standard Time, nabirch@... writes: << I had two pseudoarthroses and they were corrected surgically. >> Were these repaired from the front? I had surgery in Dec to repair two pseudoathrosis sites and found out Wed. that the doc wants to now do an anterior fusion/repair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Hi Deneine.. Mine name is Kelley.. I was just diagnosed with Stills in October of 2002 also.. I have been through everything that Keahley has gone through.. With the Bone Marrow, swollen lymphgland, different diagnosis.. In retro spect I have had this since I was her age but didn't have my bad flare until September of 2000. I have pretty much always had my rash.. I have found a prescription cream Clobetasol Propionate ointment that helps with the rash, doesn't do much for the itching though.. It will help to clear the rash up for a few days, but it will come back.. I hope this helps some.. I too am on Methotrexate 15mgs as of a couple weeks ago.. started out at 7.5mgx, but have been told that is just a starter dose. The MTX (methotrexate) does take a long time to get into the system. I was watching the Today Show yesterday on a Piano composser who has RA and they have him on 17.5 of MTX and he is now able to play the Piano again, so there is some hope for this drug.. That is the only down fall is it takes so long to get into the system to help.. Sorry this was so long.. Feel free to right anytime. Are you in Ohio? I have family there.. Take care and my thoughts and prayers are with your daughter.. Kelley in Colorado Kelleyak31@... > So glad to find this site! My 16 year old daughter, Keahley, began > having fevers, rash, headache, one swollen lymph gland in neck, and > eventually the pain starting in August, 2002. They tested her > initially for Strep, which at one point was positive, but then > symptoms never improved with antibiotics. Then came Mono, Cat > Scratch Fever, Parvo Virus,(I can't remember them all!) They even at > one point diagnosed her with Rheumatic Fever and had her taking 20 > aspirin/day for a week, which ended with severe vomitting and an echo > that showed no heart involvement. We saw several dermatologists, > infectious disease docs and was finally referred to a pediatric > rheumatologist/immunologist in Oct. at Children's Hospital in > Birmingham. She had a horrible flare the last of Oct. and was > hospitalized for a week. We were having to help her turn she was > hurting so bad. They did bone marrow biopsy, nerve stim tests, upper > GI, MRI, multiple blood cultures, and every other test known! She > got her first dose of Solu-Medrol and was like night/day. We left > the hospital on 60 mg Prednisone/day, Celebrex, Prilosec. The > following two months she got gamma globulin, but really saw no > improvement from it. A couple months ago, a Rheumatology specialist > from Ohio Children's Hospital came down to do a seminar and we got to > see him. He was the one that pretty much pointed to Still's > Disease/systemic juvenile arthritis. He wanted her to try Enbrel, > but my wonderful insurance company wouldn't hear of it until we tried > Methotrexate, so we did. It seemed to help and we started weaning > the Prednisone. We were down to 15 mg one day and 7.5 the next and > she had a major flare starting with that horrible evening rash/temp > about 3 days ago. Last night the pain started back in her shoulders, > arms and hands, so we went back to her rheumy today....and of all > days today was her first day of training for her first job as a > couselor at the summer camp she has went to since she was 8!! So her > rheum. said the Methotrexate just wasn't going to do it and he wanted > to give the Enbrel a try now, but guess what!! insurance rejected > again, saying we have to give the Methotrexate 6 months!! So back up > to 20 mg. Prednisone/day. I am so frustrated! I'm a nurse and have > some of the worst roadblocks to good healthcare there are! Makes me > feel I need to quit my job, get a government subsidized house, food > stamps, medicaid and maybe then I could get what my daughter needs! > (Sorry, just a soapbox moment.) This girl had missed all but 7 days > of her sophmore year up until spring break, and she pulled off > getting caught up and was promoted to the 11th. Now this. She cried > so hard. Her rheum. left it up to her whether to go to the camp > training or not and she went. I talked to the director and he's > going to work with her. She wouldn't even take her bathing suit > because of the rash and will only wear blue jeans/capris. I am just > heartsick for her. Does the rash continue forever? We've had 9 > months of it. This is way too long, I know, but I appreciate the > support and knowledge I've gained just in the last two days!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Hi Deneine.. Mine name is Kelley.. I was just diagnosed with Stills in October of 2002 also.. I have been through everything that Keahley has gone through.. With the Bone Marrow, swollen lymphgland, different diagnosis.. In retro spect I have had this since I was her age but didn't have my bad flare until September of 2000. I have pretty much always had my rash.. I have found a prescription cream Clobetasol Propionate ointment that helps with the rash, doesn't do much for the itching though.. It will help to clear the rash up for a few days, but it will come back.. I hope this helps some.. I too am on Methotrexate 15mgs as of a couple weeks ago.. started out at 7.5mgx, but have been told that is just a starter dose. The MTX (methotrexate) does take a long time to get into the system. I was watching the Today Show yesterday on a Piano composser who has RA and they have him on 17.5 of MTX and he is now able to play the Piano again, so there is some hope for this drug.. That is the only down fall is it takes so long to get into the system to help.. Sorry this was so long.. Feel free to right anytime. Are you in Ohio? I have family there.. Take care and my thoughts and prayers are with your daughter.. Kelley in Colorado Kelleyak31@... > So glad to find this site! My 16 year old daughter, Keahley, began > having fevers, rash, headache, one swollen lymph gland in neck, and > eventually the pain starting in August, 2002. They tested her > initially for Strep, which at one point was positive, but then > symptoms never improved with antibiotics. Then came Mono, Cat > Scratch Fever, Parvo Virus,(I can't remember them all!) They even at > one point diagnosed her with Rheumatic Fever and had her taking 20 > aspirin/day for a week, which ended with severe vomitting and an echo > that showed no heart involvement. We saw several dermatologists, > infectious disease docs and was finally referred to a pediatric > rheumatologist/immunologist in Oct. at Children's Hospital in > Birmingham. She had a horrible flare the last of Oct. and was > hospitalized for a week. We were having to help her turn she was > hurting so bad. They did bone marrow biopsy, nerve stim tests, upper > GI, MRI, multiple blood cultures, and every other test known! She > got her first dose of Solu-Medrol and was like night/day. We left > the hospital on 60 mg Prednisone/day, Celebrex, Prilosec. The > following two months she got gamma globulin, but really saw no > improvement from it. A couple months ago, a Rheumatology specialist > from Ohio Children's Hospital came down to do a seminar and we got to > see him. He was the one that pretty much pointed to Still's > Disease/systemic juvenile arthritis. He wanted her to try Enbrel, > but my wonderful insurance company wouldn't hear of it until we tried > Methotrexate, so we did. It seemed to help and we started weaning > the Prednisone. We were down to 15 mg one day and 7.5 the next and > she had a major flare starting with that horrible evening rash/temp > about 3 days ago. Last night the pain started back in her shoulders, > arms and hands, so we went back to her rheumy today....and of all > days today was her first day of training for her first job as a > couselor at the summer camp she has went to since she was 8!! So her > rheum. said the Methotrexate just wasn't going to do it and he wanted > to give the Enbrel a try now, but guess what!! insurance rejected > again, saying we have to give the Methotrexate 6 months!! So back up > to 20 mg. Prednisone/day. I am so frustrated! I'm a nurse and have > some of the worst roadblocks to good healthcare there are! Makes me > feel I need to quit my job, get a government subsidized house, food > stamps, medicaid and maybe then I could get what my daughter needs! > (Sorry, just a soapbox moment.) This girl had missed all but 7 days > of her sophmore year up until spring break, and she pulled off > getting caught up and was promoted to the 11th. Now this. She cried > so hard. Her rheum. left it up to her whether to go to the camp > training or not and she went. I talked to the director and he's > going to work with her. She wouldn't even take her bathing suit > because of the rash and will only wear blue jeans/capris. I am just > heartsick for her. Does the rash continue forever? We've had 9 > months of it. This is way too long, I know, but I appreciate the > support and knowledge I've gained just in the last two days!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Hi, I had the rash for a while but it subsided with the rest of the symptoms when I hit the correct amount of Pred (I was on 80 mg at first). I also had all of those tests done and know how frustrating it is not only for your daughter but for you as well. I too was in the hospital and felt like my life was over. Your daughter is so young and I hope she gets well soon. I think it is great she is still going to the camp, that type of drive and perseverance is what she needs to get thru this. I am sorry about the insurance company (I don't understand how they are in the position to make medical decisions). SM >From: " deneine " <neinebug@...> >Reply-Stillsdisease >Stillsdisease >Subject: New to board >Date: Thu, 29 May 2003 09:11:40 -0000 > >So glad to find this site! My 16 year old daughter, Keahley, began >having fevers, rash, headache, one swollen lymph gland in neck, and >eventually the pain starting in August, 2002. They tested her >initially for Strep, which at one point was positive, but then >symptoms never improved with antibiotics. Then came Mono, Cat >Scratch Fever, Parvo Virus,(I can't remember them all!) They even at >one point diagnosed her with Rheumatic Fever and had her taking 20 >aspirin/day for a week, which ended with severe vomitting and an echo >that showed no heart involvement. We saw several dermatologists, >infectious disease docs and was finally referred to a pediatric >rheumatologist/immunologist in Oct. at Children's Hospital in >Birmingham. She had a horrible flare the last of Oct. and was >hospitalized for a week. We were having to help her turn she was >hurting so bad. They did bone marrow biopsy, nerve stim tests, upper >GI, MRI, multiple blood cultures, and every other test known! She >got her first dose of Solu-Medrol and was like night/day. We left >the hospital on 60 mg Prednisone/day, Celebrex, Prilosec. The >following two months she got gamma globulin, but really saw no >improvement from it. A couple months ago, a Rheumatology specialist >from Ohio Children's Hospital came down to do a seminar and we got to >see him. He was the one that pretty much pointed to Still's >Disease/systemic juvenile arthritis. He wanted her to try Enbrel, >but my wonderful insurance company wouldn't hear of it until we tried >Methotrexate, so we did. It seemed to help and we started weaning >the Prednisone. We were down to 15 mg one day and 7.5 the next and >she had a major flare starting with that horrible evening rash/temp >about 3 days ago. Last night the pain started back in her shoulders, >arms and hands, so we went back to her rheumy today....and of all >days today was her first day of training for her first job as a >couselor at the summer camp she has went to since she was 8!! So her >rheum. said the Methotrexate just wasn't going to do it and he wanted >to give the Enbrel a try now, but guess what!! insurance rejected >again, saying we have to give the Methotrexate 6 months!! So back up >to 20 mg. Prednisone/day. I am so frustrated! I'm a nurse and have >some of the worst roadblocks to good healthcare there are! Makes me >feel I need to quit my job, get a government subsidized house, food >stamps, medicaid and maybe then I could get what my daughter needs! >(Sorry, just a soapbox moment.) This girl had missed all but 7 days >of her sophmore year up until spring break, and she pulled off >getting caught up and was promoted to the 11th. Now this. She cried >so hard. Her rheum. left it up to her whether to go to the camp >training or not and she went. I talked to the director and he's >going to work with her. She wouldn't even take her bathing suit >because of the rash and will only wear blue jeans/capris. I am just >heartsick for her. Does the rash continue forever? We've had 9 >months of it. This is way too long, I know, but I appreciate the >support and knowledge I've gained just in the last two days!! > _________________________________________________________________ Protect your PC - get McAfee.com VirusScan Online http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Hi! Im very sorry to hear that your daughter got this disease, but you've arrived to a good place to know more and meet with some other parents in this same boat. Im Nuno from Portugal, and i have this " dragon " since child so i can somewhat relate to what Keahley may feel, but its important that she keeps doing the things she likes, with time she will know how far can she go. That decrease in prednisone was way to quick to work. As for the rash, its a major annoyance when we are teens, but sometimes it may disappear. As for the insurances, they really are a nuisance from what i've read in this group, in Portugal we have mainly an national health service. Im lucky that my parents and family are in the business (nurses,doctors, technicians...) and im able to cut some red tape, if not i believe i wouldnt be here now. Sorry for the blabering... :-) Be well and stay well, Nuno aka Nunito Coimbra Portugal nunito71@... New to board > So glad to find this site! My 16 year old daughter, Keahley, began > having fevers, rash, headache, one swollen lymph gland in neck, and > eventually the pain starting in August, 2002. They tested her > initially for Strep, which at one point was positive, but then > symptoms never improved with antibiotics. Then came Mono, Cat > Scratch Fever, Parvo Virus,(I can't remember them all!) They even at > one point diagnosed her with Rheumatic Fever and had her taking 20 > aspirin/day for a week, which ended with severe vomitting and an echo > that showed no heart involvement. We saw several dermatologists, > infectious disease docs and was finally referred to a pediatric > rheumatologist/immunologist in Oct. at Children's Hospital in > Birmingham. She had a horrible flare the last of Oct. and was > hospitalized for a week. We were having to help her turn she was > hurting so bad. They did bone marrow biopsy, nerve stim tests, upper > GI, MRI, multiple blood cultures, and every other test known! She > got her first dose of Solu-Medrol and was like night/day. We left > the hospital on 60 mg Prednisone/day, Celebrex, Prilosec. The > following two months she got gamma globulin, but really saw no > improvement from it. A couple months ago, a Rheumatology specialist > from Ohio Children's Hospital came down to do a seminar and we got to > see him. He was the one that pretty much pointed to Still's > Disease/systemic juvenile arthritis. He wanted her to try Enbrel, > but my wonderful insurance company wouldn't hear of it until we tried > Methotrexate, so we did. It seemed to help and we started weaning > the Prednisone. We were down to 15 mg one day and 7.5 the next and > she had a major flare starting with that horrible evening rash/temp > about 3 days ago. Last night the pain started back in her shoulders, > arms and hands, so we went back to her rheumy today....and of all > days today was her first day of training for her first job as a > couselor at the summer camp she has went to since she was 8!! So her > rheum. said the Methotrexate just wasn't going to do it and he wanted > to give the Enbrel a try now, but guess what!! insurance rejected > again, saying we have to give the Methotrexate 6 months!! So back up > to 20 mg. Prednisone/day. I am so frustrated! I'm a nurse and have > some of the worst roadblocks to good healthcare there are! Makes me > feel I need to quit my job, get a government subsidized house, food > stamps, medicaid and maybe then I could get what my daughter needs! > (Sorry, just a soapbox moment.) This girl had missed all but 7 days > of her sophmore year up until spring break, and she pulled off > getting caught up and was promoted to the 11th. Now this. She cried > so hard. Her rheum. left it up to her whether to go to the camp > training or not and she went. I talked to the director and he's > going to work with her. She wouldn't even take her bathing suit > because of the rash and will only wear blue jeans/capris. I am just > heartsick for her. Does the rash continue forever? We've had 9 > months of it. This is way too long, I know, but I appreciate the > support and knowledge I've gained just in the last two days!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Welcome Deneine and Keahley! My nickname is Melt. I have had this disease diagnosed since the age of 19 and I will be 46 next month. My experience was the first couple of years were definitely the worst but it did get better. Everyone is different but I think the important part to remember is a positive outlook because none of us can know what our future may be and lot's of rest. Keahley will learn what might be too much for her but it always changes so she will learn to adjust. There are social security benefits for children disabled also. You might want to give them a call. The best thing a Mom can do is to be there with a hug and touches. I had my mom for many years but what I miss the most is her holding me or rubbing my forehead when I am sick. Again welcome and we have weekly chats that are a good way to talk one on one with members too. Till soon, Melt ----- Original Message ----- From: " deneine " <neinebug@...> > So glad to find this site! My 16 year old daughter, Keahley, began > having fevers, rash, headache, one swollen lymph gland in neck, and > eventually the pain starting in August, 2002. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Deneine, Keahley & family, We are all so glad to see you have made your way to us but are sad for the reason why as it always means there is someone else out there with this terrible disease. But let me tell you that you have found a wonderful place and I'm sure you will be given lots of information, etc. People are so friendly here...it's a great bunch of people and I know you will love it. It sounds like your daughter has been through a lot for a girl her age. I was diagnosed with rheumatoid arthritis when I was born, it went into remission around the age of 8yrs. old but came back with a vengence in Nov. 1985 when I was 15yrs. old and has been with me ever since. I do hope that the MTX will kick in and yes the insurance companies sure can be a pain when they want to. Take care, Marilyn mhogg69@... Canada ----Original Message Follows---- From: " deneine " <neinebug@...> So glad to find this site! My 16 year old daughter, Keahley, began having fevers, rash, headache, one swollen lymph gland in neck, and eventually the pain starting in August, 2002. They tested her initially for Strep, which at one point was positive, but then symptoms never improved with antibiotics. Then came Mono, Cat Scratch Fever, Parvo Virus,(I can't remember them all!) They even at one point diagnosed her with Rheumatic Fever and had her taking 20 aspirin/day for a week, which ended with severe vomitting and an echo that showed no heart involvement. We saw several dermatologists, infectious disease docs and was finally referred to a pediatric rheumatologist/immunologist in Oct. at Children's Hospital in Birmingham. She had a horrible flare the last of Oct. and was hospitalized for a week. We were having to help her turn she was hurting so bad. They did bone marrow biopsy, nerve stim tests, upper GI, MRI, multiple blood cultures, and every other test known! She got her first dose of Solu-Medrol and was like night/day. We left the hospital on 60 mg Prednisone/day, Celebrex, Prilosec. The following two months she got gamma globulin, but really saw no improvement from it. A couple months ago, a Rheumatology specialist from Ohio Children's Hospital came down to do a seminar and we got to see him. He was the one that pretty much pointed to Still's Disease/systemic juvenile arthritis........ _________________________________________________________________ Add photos to your messages with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Hello Deneine soo sorry to hear your young daughter has got stills its hard enough for an adult to deal with well geuss anyone for that matter.About the rash i had a dousy and it has cleared up fairly well did take a long time tho.I still have on my back but its pretty faded and not too visable.Shes not the only one who self concious about this rash i was worried id be thrown out of the pool,now i just go i dont care what others think and havent had a prob even when it was fairly bad.My rhumy wants me on enbrel im from Canada almost same situation i think i havta fail 3 other drugs before Blue Cross will cover it.Ive been dx since oct 2002 and was ok for awhile then a 3 week flare bout month ago now im doin ok thnk im on track again,.just hope no derailments happen.Anyways you take care and welcome. d.Canada New to board So glad to find this site! My 16 year old daughter, Keahley, began having fevers, rash, headache, one swollen lymph gland in neck, and eventually the pain starting in August, 2002. They tested her initially for Strep, which at one point was positive, but then symptoms never improved with antibiotics. Then came Mono, Cat Scratch Fever, Parvo Virus,(I can't remember them all!) They even at one point diagnosed her with Rheumatic Fever and had her taking 20 aspirin/day for a week, which ended with severe vomitting and an echo that showed no heart involvement. We saw several dermatologists, infectious disease docs and was finally referred to a pediatric rheumatologist/immunologist in Oct. at Children's Hospital in Birmingham. She had a horrible flare the last of Oct. and was hospitalized for a week. We were having to help her turn she was hurting so bad. They did bone marrow biopsy, nerve stim tests, upper GI, MRI, multiple blood cultures, and every other test known! She got her first dose of Solu-Medrol and was like night/day. We left the hospital on 60 mg Prednisone/day, Celebrex, Prilosec. The following two months she got gamma globulin, but really saw no improvement from it. A couple months ago, a Rheumatology specialist from Ohio Children's Hospital came down to do a seminar and we got to see him. He was the one that pretty much pointed to Still's Disease/systemic juvenile arthritis. He wanted her to try Enbrel, but my wonderful insurance company wouldn't hear of it until we tried Methotrexate, so we did. It seemed to help and we started weaning the Prednisone. We were down to 15 mg one day and 7.5 the next and she had a major flare starting with that horrible evening rash/temp about 3 days ago. Last night the pain started back in her shoulders, arms and hands, so we went back to her rheumy today....and of all days today was her first day of training for her first job as a couselor at the summer camp she has went to since she was 8!! So her rheum. said the Methotrexate just wasn't going to do it and he wanted to give the Enbrel a try now, but guess what!! insurance rejected again, saying we have to give the Methotrexate 6 months!! So back up to 20 mg. Prednisone/day. I am so frustrated! I'm a nurse and have some of the worst roadblocks to good healthcare there are! Makes me feel I need to quit my job, get a government subsidized house, food stamps, medicaid and maybe then I could get what my daughter needs! (Sorry, just a soapbox moment.) This girl had missed all but 7 days of her sophmore year up until spring break, and she pulled off getting caught up and was promoted to the 11th. Now this. She cried so hard. Her rheum. left it up to her whether to go to the camp training or not and she went. I talked to the director and he's going to work with her. She wouldn't even take her bathing suit because of the rash and will only wear blue jeans/capris. I am just heartsick for her. Does the rash continue forever? We've had 9 months of it. This is way too long, I know, but I appreciate the support and knowledge I've gained just in the last two days!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 WELCOME DENEINE AND KEAHLEY Sorry to hear Keahley has Stills, but am glad that finally has a diagnosis and can start getting some treatment to beat that old dragon down. While reading through your post, I am hearing you describe starting methotrexate and decreasing the prednisone. Maybe you were making a long story short, but I picked up on the 15mg of prednisone and then 7.5mg the next day, then big ole flare. If she really did decrease that fast OUCH. Most prednisone tapers let you decrease down at about 2.5 mg every oh maybe 2 weeks while you kinda balance out things. Once you get down to 10mg then more than likely should decrease at a 1mg each stage. I was given 120mg a day for a few days in hospital when was in there trying to croak off, then down to like 80, then 60, then started the splitting of 20's in half and then mixing in the 5's, (kinda a 10mg decrease at first, then an eternity of 5mg decreases, then an everlasting story of 2.5mg decreases, then when got down to 10mg there was light at the end of the tunnel and down to decreasing 1mg steps each 2 weeks. Right now no prednisone for over 3 months now. Still taking methotrexate, and old Mr. White Coat says probably another year to take the stuff. (started at 15mg a week and went to 17.5 oh maybe about after 2 months of taking it). Went from being able to do nothing, to almost human. Dan BS (for big sky not what some say it is) presently in the land of oz (at moms house in kansas) Today the cowardly lion got brave ( moms cat stalked a bird and got it) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Hi Deneine ( & Keahley). I haven't read the other responses to your post but I am sure there is probably nothing I could say that has not already been said to you. I do want to tell you that I am so very sorry that you have to watch your daughter suffer Deneine, but that is pretty much all you can do until the 'dragon' as we call this disease, decides to loosen it's grip on her. The medicines do help with time (unless you have a resistant system) and it sounds like your daughter has strong will-power to not let this thing slow her down and that is a very good sign. This disease will take an emotional toll on you as well as physical; the victim as well as the family. Try to be strong for Keahley, and supportive, but also try to be prepared to get her some help physchologically if needed. Several of us here at the site are on at least one anti-depressant due to the emotional turmoil that the pain and change of life that this disease causes. Anyway, I am glad that you found this site, because the people here will definitely help you and Keahley along the way. If ever you need someone to just talk to or whatever, feel free to email me. Love and hugs to the new members of our family.... Traci > So glad to find this site! My 16 year old daughter, Keahley, began > having fevers, rash, headache, one swollen lymph gland in neck, and > eventually the pain starting in August, 2002. They tested her > initially for Strep, which at one point was positive, but then > symptoms never improved with antibiotics. Then came Mono, Cat > Scratch Fever, Parvo Virus,(I can't remember them all!) They even at > one point diagnosed her with Rheumatic Fever and had her taking 20 > aspirin/day for a week, which ended with severe vomitting and an echo > that showed no heart involvement. We saw several dermatologists, > infectious disease docs and was finally referred to a pediatric > rheumatologist/immunologist in Oct. at Children's Hospital in > Birmingham. She had a horrible flare the last of Oct. and was > hospitalized for a week. We were having to help her turn she was > hurting so bad. They did bone marrow biopsy, nerve stim tests, upper > GI, MRI, multiple blood cultures, and every other test known! She > got her first dose of Solu-Medrol and was like night/day. We left > the hospital on 60 mg Prednisone/day, Celebrex, Prilosec. The > following two months she got gamma globulin, but really saw no > improvement from it. A couple months ago, a Rheumatology specialist > from Ohio Children's Hospital came down to do a seminar and we got to > see him. He was the one that pretty much pointed to Still's > Disease/systemic juvenile arthritis. He wanted her to try Enbrel, > but my wonderful insurance company wouldn't hear of it until we tried > Methotrexate, so we did. It seemed to help and we started weaning > the Prednisone. We were down to 15 mg one day and 7.5 the next and > she had a major flare starting with that horrible evening rash/temp > about 3 days ago. Last night the pain started back in her shoulders, > arms and hands, so we went back to her rheumy today....and of all > days today was her first day of training for her first job as a > couselor at the summer camp she has went to since she was 8!! So her > rheum. said the Methotrexate just wasn't going to do it and he wanted > to give the Enbrel a try now, but guess what!! insurance rejected > again, saying we have to give the Methotrexate 6 months!! So back up > to 20 mg. Prednisone/day. I am so frustrated! I'm a nurse and have > some of the worst roadblocks to good healthcare there are! Makes me > feel I need to quit my job, get a government subsidized house, food > stamps, medicaid and maybe then I could get what my daughter needs! > (Sorry, just a soapbox moment.) This girl had missed all but 7 days > of her sophmore year up until spring break, and she pulled off > getting caught up and was promoted to the 11th. Now this. She cried > so hard. Her rheum. left it up to her whether to go to the camp > training or not and she went. I talked to the director and he's > going to work with her. She wouldn't even take her bathing suit > because of the rash and will only wear blue jeans/capris. I am just > heartsick for her. Does the rash continue forever? We've had 9 > months of it. This is way too long, I know, but I appreciate the > support and knowledge I've gained just in the last two days!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Thanks for the info. The response has been overwhelmingly appreciated. We are in Oneonta, AL. Thanks again! > > So glad to find this site! My 16 year old daughter, Keahley, began > > having fevers, rash, headache, one swollen lymph gland in neck, and > > eventually the pain starting in August, 2002. They tested her > > initially for Strep, which at one point was positive, but then > > symptoms never improved with antibiotics. Then came Mono, Cat > > Scratch Fever, Parvo Virus,(I can't remember them all!) They even > at > > one point diagnosed her with Rheumatic Fever and had her taking 20 > > aspirin/day for a week, which ended with severe vomitting and an > echo > > that showed no heart involvement. We saw several dermatologists, > > infectious disease docs and was finally referred to a pediatric > > rheumatologist/immunologist in Oct. at Children's Hospital in > > Birmingham. She had a horrible flare the last of Oct. and was > > hospitalized for a week. We were having to help her turn she was > > hurting so bad. They did bone marrow biopsy, nerve stim tests, > upper > > GI, MRI, multiple blood cultures, and every other test known! She > > got her first dose of Solu-Medrol and was like night/day. We left > > the hospital on 60 mg Prednisone/day, Celebrex, Prilosec. The > > following two months she got gamma globulin, but really saw no > > improvement from it. A couple months ago, a Rheumatology > specialist > > from Ohio Children's Hospital came down to do a seminar and we got > to > > see him. He was the one that pretty much pointed to Still's > > Disease/systemic juvenile arthritis. He wanted her to try Enbrel, > > but my wonderful insurance company wouldn't hear of it until we > tried > > Methotrexate, so we did. It seemed to help and we started weaning > > the Prednisone. We were down to 15 mg one day and 7.5 the next and > > she had a major flare starting with that horrible evening rash/temp > > about 3 days ago. Last night the pain started back in her > shoulders, > > arms and hands, so we went back to her rheumy today....and of all > > days today was her first day of training for her first job as a > > couselor at the summer camp she has went to since she was 8!! So > her > > rheum. said the Methotrexate just wasn't going to do it and he > wanted > > to give the Enbrel a try now, but guess what!! insurance rejected > > again, saying we have to give the Methotrexate 6 months!! So back > up > > to 20 mg. Prednisone/day. I am so frustrated! I'm a nurse and > have > > some of the worst roadblocks to good healthcare there are! Makes > me > > feel I need to quit my job, get a government subsidized house, food > > stamps, medicaid and maybe then I could get what my daughter > needs! > > (Sorry, just a soapbox moment.) This girl had missed all but 7 > days > > of her sophmore year up until spring break, and she pulled off > > getting caught up and was promoted to the 11th. Now this. She > cried > > so hard. Her rheum. left it up to her whether to go to the camp > > training or not and she went. I talked to the director and he's > > going to work with her. She wouldn't even take her bathing suit > > because of the rash and will only wear blue jeans/capris. I am > just > > heartsick for her. Does the rash continue forever? We've had 9 > > months of it. This is way too long, I know, but I appreciate the > > support and knowledge I've gained just in the last two days!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2003 Report Share Posted October 3, 2003 Welcome ! Thank you for sharing your story with us. I too chose dilation the first (and second) time around, not wanting to do anything "permanent" or "irreversible" --- if I'd known back in the 90's what I know now, I too would have gone the surgery route the first time 'round. That said, I'm glad that I DIDN'T have the surgery yet, because in the meantime I found this board and found out about The Cleveland Clinic in Ohio -- I had no idea there were doctors and surgeons with so much experience with achalasia! I'm now under the care of the doctors there, and I'm going to be evaluated again next spring. Fortunately, in my case it appears that I *will* be a candidate for laparoscopic surgery. If you don't mind sharing, who performed your surgery, and where? What was your level of "success" or side effects from your surgery? We're always looking to add experienced doctors to our list here... unfortunately, there just aren't that many out there who really know what we go through and what options we have for treatment! Thanks again for sharing with us!Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
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