Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Welcome Dixie, I am 41 years old, married, I have 2 daughters 22 and 9. I have lived in Oklahoma all my life. I am so glad you joined the group, hugs Tawny > Hi! > I just joined the group. After reading what was at the home site, it sounded just like what I've been looking for. > My diagnoses are: RA, OA, IA, DDD, AS, and fibro. I'll also warn you that I'm bipolar, and when any of my mania is present, I can get silly, goofy, loquacious, and just a tad crazy-funny. Humor is one of the ways I use to cope with my illnesses, so I hope it has a place in this group. > Dixie is my nickname, and I tend to go by Dix, which is what my sisters call me, as well as a few close friends. I'm married to Dan for nearly 34 years, have 7 grown children, 3 grandchildren, and one doggie, a 6 month old male Maltipoo named Bobo. > My hobbies are gardening, cooking, reading, and playing with my computer. > That's about it. > I'd love to hear from you letting me know a little about you. I look forward to meeting you, and getting to know you better and becoming friends. > Dix > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Hi Dixie, I just wanted to welcome you into the group. My name is and I live in southern CA. I am 50 yrs.old and I have two grown boys, one is in the Army and in Iraq. I also have a daughter who still lives with me, she is going to college and she happens to be my best friend, and she helps me take care of the house and two of my 7 grandkids, that have lived with us for the past 9 yrs. I had to lol when I read your illnesses, what is IA and AS? My illnesses are RA, OA and Degerative Arthritis. I hope that you keep posting. I am fairly new to the group, but I have noticed that its a great group of people, and that they are loving and caring. Talk to you later: ROSA > Hi! > I just joined the group. After reading what was at the home site, it sounded just like what I've been looking for. > My diagnoses are: RA, OA, IA, DDD, AS, and fibro. I'll also warn you that I'm bipolar, and when any of my mania is present, I can get silly, goofy, loquacious, and just a tad crazy-funny. Humor is one of the ways I use to cope with my illnesses, so I hope it has a place in this group. > Dixie is my nickname, and I tend to go by Dix, which is what my sisters call me, as well as a few close friends. I'm married to Dan for nearly 34 years, have 7 grown children, 3 grandchildren, and one doggie, a 6 month old male Maltipoo named Bobo. > My hobbies are gardening, cooking, reading, and playing with my computer. > That's about it. > I'd love to hear from you letting me know a little about you. I look forward to meeting you, and getting to know you better and becoming friends. > Dix > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Welcome, Dix! Glad you found us. Sorry about all of your diagnoses. Yes, a sense of humor is most welcome and much needed here! Please feel free to be yourself. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New to group > Hi! > I just joined the group. After reading what was at the home site, it sounded just like what I've been looking for. > My diagnoses are: RA, OA, IA, DDD, AS, and fibro. I'll also warn you that I'm bipolar, and when any of my mania is present, I can get silly, goofy, loquacious, and just a tad crazy-funny. Humor is one of the ways I use to cope with my illnesses, so I hope it has a place in this group. > Dixie is my nickname, and I tend to go by Dix, which is what my sisters call me, as well as a few close friends. I'm married to Dan for nearly 34 years, have 7 grown children, 3 grandchildren, and one doggie, a 6 month old male Maltipoo named Bobo. > My hobbies are gardening, cooking, reading, and playing with my computer. > That's about it. > I'd love to hear from you letting me know a little about you. I look forward to meeting you, and getting to know you better and becoming friends. > Dix Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 In a message dated 8/3/04 8:43:12 PM Eastern Daylight Time, sand8013@... writes: > >>>What is the book you guys keep referring to? NT? > > Nourishing Traditions by Sally Fallon :-) > http://www.westonaprice.org/book_reviews/nourishing_traditions.html Really? All this time I thought it was referring to the four Gospels and the letters of the Apostles. I figured " traditional foods " were what the apostles ate 2000 years ago. Who's Sally Fallon? Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 > I don't appreciate your smart-arse reply. It often takes new members > a little while to catch onto the lingo of a group. How about being a > bit more considerate? I wasn't being sarcastic, just humorous. You know, NT = New Testament; OT = Old Testament. I don't think I said anything implying the person should have known what " NT " stood for. Is a giggle now and then ok? By the way, it would probably be useful to develop a list of abbreviations commonly used on this list, upload it to the files section, and link to it in the welcome email of the list. Or just print it in the welcome list. Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 In a message dated 8/3/04 11:24:20 PM Eastern Daylight Time, sand8013@... writes: > >>>I wasn't being sarcastic, just humorous. You know, NT = New Testament; > OT = > Old Testament. I don't think I said anything implying the person should > have > known what " NT " stood for. Is a giggle now and then ok?<<< > > That's all well and good for people who've been around for a while, but > unsuspecting newbies could easily take offence. Are you an unsuspecting newbie? I thought you'd been around for a while. Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 >>>What is the book you guys keep referring to? NT? Nourishing Traditions by Sally Fallon :-) http://www.westonaprice.org/book_reviews/nourishing_traditions.html Cheers, Tas'. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 > Really? All this time I thought it was referring to the four Gospels and the > letters of the Apostles. I figured " traditional foods " were what the > apostles ate 2000 years ago. Who's Sally Fallon? > > Chris I don't appreciate your smart-arse reply. It often takes new members a little while to catch onto the lingo of a group. How about being a bit more considerate? Tas'. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Sorry, but what better way to initiate new members to the folks on this list? And really, if you subscribe to a list serve that discusses Nourishing Traditions........it just isn't that huge of a mental leap to figure out what book NT is an acronym for! Not that I'm picking sides, but I thought Chris' comment was humorous. Nanette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 >>>I wasn't being sarcastic, just humorous. You know, NT = New Testament; OT = Old Testament. I don't think I said anything implying the person should have known what " NT " stood for. Is a giggle now and then ok?<<< That's all well and good for people who've been around for a while, but unsuspecting newbies could easily take offence. >>>By the way, it would probably be useful to develop a list of abbreviations commonly used on this list, upload it to the files section, and link to it in the welcome email of the list. Or just print it in the welcome list.<<< I think that would be a good idea. Cheers, Tas'. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 >>>Are you an unsuspecting newbie? I thought you'd been around for a while.<<< I'm not the unsuspecting newbie. You were making fun of my reply to the unsuspecting newbie. Tas'. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hi . Welcome to the group. > Hello My name is and I am 40 yo. I was diagnosised with RA > three years ago. I was on meds but I am currently off meds. My > doctor is starting Methotrexate injections once he reviews my > labwork. I look forward to meeting others and learning more about > this disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Welcome, ! I'm looking forward to learning more about you. Hope you'll like it here. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New to group > Hello My name is and I am 40 yo. I was diagnosised with RA > three years ago. I was on meds but I am currently off meds. My > doctor is starting Methotrexate injections once he reviews my > labwork. I look forward to meeting others and learning more about > this disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Hi and welcome to the group! It's nice to know that you have some local support with and Amy. Let us know when you get that appt with the craniofacial specialist and how it turns out. Many pediatricians have been blind to plagio but we are seeing that they are coming around these days. It takes awhile for them to get the word, but they do eventually get it. Again, Welcome to the group! Dustie, Mom to , DOCGrad'03 Texas --- In Plagiocephaly , " mcasper10 " <mcasper10@h...> wrote: > Hi, my name is and I have a 4 month old (today!) duaghter named > MacKenzie who is just got her referral today for her plagio. We are > in the Twin Cities area in Minnesota and I have been talking to > already and hope to talk to Amy. > We noticed her head flattening on the back left side before her two > month appt. at pediatrician. I brought it up and he said if it was > still flat at 4 months he would give us a referral. Wish I had known > then what I know now, we wasted two months. Anyways, we got our first > referral today. I have a call into the Craniofacial team, waiting to > hear back to get an appt. > I have learned so much in the past weeks from these boards and all > the wonderful info on the website, I would just like to say tahnk > you. Like another poster said today, she thought she knew everything > about parenting, I have two boys ages 12 and 9, but they were in the > time where we put them to sleep on their sides, never dealt with this > before. > I will be posting when I can, but life is pretty hectic with three, > thanks again for all the info everyone has posted! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Hi , Welcome to the group. Though it may be frustrating that you have lost two months, on the other hand, MacKenzie is still much younger than most babies seeing specialists. I hope it doesn't take too long for you guys to get an appointment. Please keep us updated! , mom to Hannah, DOCgrad Cape Cod, Ma --- In Plagiocephaly , " mcasper10 " <mcasper10@h...> wrote: > Hi, my name is and I have a 4 month old (today!) duaghter named > MacKenzie who is just got her referral today for her plagio. We are > in the Twin Cities area in Minnesota and I have been talking to > already and hope to talk to Amy. > We noticed her head flattening on the back left side before her two > month appt. at pediatrician. I brought it up and he said if it was > still flat at 4 months he would give us a referral. Wish I had known > then what I know now, we wasted two months. Anyways, we got our first > referral today. I have a call into the Craniofacial team, waiting to > hear back to get an appt. > I have learned so much in the past weeks from these boards and all > the wonderful info on the website, I would just like to say tahnk > you. Like another poster said today, she thought she knew everything > about parenting, I have two boys ages 12 and 9, but they were in the > time where we put them to sleep on their sides, never dealt with this > before. > I will be posting when I can, but life is pretty hectic with three, > thanks again for all the info everyone has posted! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Hi , Welcome to the group!! I am sure Amy will contact you very soon. She is very very familiar with MN helmets and all the protocol. She'll have excellent suggestions. Don't worry about your daughters age. She's at an excellent age for great correction, even if she doesn't get the helmet for another 2 months, she's still ahead of the game. Your daughter will be on her way to rounding before you know it. My daughter didn't get in until she was 8 months old (her doc made me wait until she was 6 months.. then another 2) and she still had good results, even after using a passive helmet. Please keep us posted!! , mom to Makenna LLUMC helmet grad '03. --- In Plagiocephaly , " mcasper10 " <mcasper10@h...> wrote: > Hi, my name is and I have a 4 month old (today!) duaghter named > MacKenzie who is just got her referral today for her plagio. We are > in the Twin Cities area in Minnesota and I have been talking to > already and hope to talk to Amy. > We noticed her head flattening on the back left side before her two > month appt. at pediatrician. I brought it up and he said if it was > still flat at 4 months he would give us a referral. Wish I had known > then what I know now, we wasted two months. Anyways, we got our first > referral today. I have a call into the Craniofacial team, waiting to > hear back to get an appt. > I have learned so much in the past weeks from these boards and all > the wonderful info on the website, I would just like to say tahnk > you. Like another poster said today, she thought she knew everything > about parenting, I have two boys ages 12 and 9, but they were in the > time where we put them to sleep on their sides, never dealt with this > before. > I will be posting when I can, but life is pretty hectic with three, > thanks again for all the info everyone has posted! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Hi , Welcome to the group. My we have a lot of folks from MN now. You guys are really on the ball. Let us know how the appts go. mom to na DOC Grad SC --- In Plagiocephaly , " mcasper10 " <mcasper10@h...> wrote: > Hi, my name is and I have a 4 month old (today!) duaghter named > MacKenzie who is just got her referral today for her plagio. We are > in the Twin Cities area in Minnesota and I have been talking to > already and hope to talk to Amy. > We noticed her head flattening on the back left side before her two > month appt. at pediatrician. I brought it up and he said if it was > still flat at 4 months he would give us a referral. Wish I had known > then what I know now, we wasted two months. Anyways, we got our first > referral today. I have a call into the Craniofacial team, waiting to > hear back to get an appt. > I have learned so much in the past weeks from these boards and all > the wonderful info on the website, I would just like to say tahnk > you. Like another poster said today, she thought she knew everything > about parenting, I have two boys ages 12 and 9, but they were in the > time where we put them to sleep on their sides, never dealt with this > before. > I will be posting when I can, but life is pretty hectic with three, > thanks again for all the info everyone has posted! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Hello Welcome to the group. Good luck with your appointment, and let us know what they say. Can you post some pictures of your daughter? We love pics around here Sandy Willow's Mom Torticollis resolved Cranio Germany Grad --- In Plagiocephaly , " mcasper10 " <mcasper10@h...> wrote: > Hi, my name is and I have a 4 month old (today!) duaghter named > MacKenzie who is just got her referral today for her plagio. We are > in the Twin Cities area in Minnesota and I have been talking to > already and hope to talk to Amy. > We noticed her head flattening on the back left side before her two > month appt. at pediatrician. I brought it up and he said if it was > still flat at 4 months he would give us a referral. Wish I had known > then what I know now, we wasted two months. Anyways, we got our first > referral today. I have a call into the Craniofacial team, waiting to > hear back to get an appt. > I have learned so much in the past weeks from these boards and all > the wonderful info on the website, I would just like to say tahnk > you. Like another poster said today, she thought she knew everything > about parenting, I have two boys ages 12 and 9, but they were in the > time where we put them to sleep on their sides, never dealt with this > before. > I will be posting when I can, but life is pretty hectic with three, > thanks again for all the info everyone has posted! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Hi , My gosh it's hard to keep up with this group!!!! Riley has been going to PT 1x week since he was 2 1/2 months old. We are now trying to see if he qualifies for our states early intervention program. The OT and PT would then come to our house. We are going to the Cranial Technologies in Glenview ,IL its about 1hr15 min away from us. His ped just gave us the letter of medical necessity and script. Thanks for the welcome, mom to Riley 41/2months(Tort, Plagio, Low Tone, Asym) and 3. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Hi Natasha, Thanks for the info! Yes, he has it in both of his SCM. From what we are told it's not unheard of but his Ped. Orthopedic Surgeon said Riley is the first on out of 500 Tort patients he has seen! We are going to the CT in GLenview ,IL Thnaks, mom to Riley 41/2months(Tort, Plagio, Low Tone, Asym) and 3. --- In Plagiocephaly , " Natasha Gubash " <ngubash@y...> wrote: > Hi , > Welcome to the group. I'm interested in Riley's tort, it is on both > sides of his SCM? > As for breastfeeding, we have had many members continue to breastfeed > while their baby is banded. I think that it is uncomfortable for the > mom until you can find a good position, most like to put a pillow > under their child's head. > > The first appt after receiving the band will be about an hour so that > they can check for any fit problems. After that the appts are very > short, usually just 10-15 minutes unless you've had any red spots, > then there will be an additional adjustment and they will ask you to > hang around a few more minutes to make sure that the fit is ok. > > What location are you using? > > Natasha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Yes, we have chosen this illness by not choosing our parents more carefully, LOL. When it comes to genes passed down, you just get pot luck. If there had been choice involved, I would have chosen some other disease. The way of living with RA before my rheumy found the best drug for me was to live in constant pain. I couldn't open a bottle or jar; I couldn't wring out a dish cloth or wash cloth or a mop; I had to pee standing over the commode because it hurt too much to bend my knees; I couldn't cut my own meat. Thank goodness there are drugs that give some of us some relief. Sue On Wednesday, September 8, 2004, at 04:53 PM, Adrienne wrote: > > Do any of you feel that at some level we have chosen this illness and > that > we can make different choices? I expect I'll offend some of you who > have not > come across this concept by saying this; forgive me. Has anyone found > a way > to live with RA that doesn't involve drugs? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Hi Adrienne and welcome to the group. Countless people have had no choice but to live with RA without the drugs. My mom was one of them, becuase she got RA before the drugs were available. I grew up watching her suffer. For years her doctors gave her aspirin and said to wait and see what happened. Well, they waited and saw her body completely deteriorate because of the joint desctruction. Today she is disabled (can't work, can't do many things she wants to do), has very disfigured hands and feet, her ankles and wrists are falling apart and she is in almost constant pain. And keep in mind, she's on good drugs now. The pain and problems she has are from irreversible joint damage she suffered in the early years of the disease. I was diagnosed a year ago. Because I started treatment right away with medication, and I was fortunate to have a good rheumatologist and that the medications I tried worked well for me, my outlook is much different from my mother's. I do not expect to be disabled or disfigured. And my odds of living the rest of my life the way I want to, with some limitations due to fatigue and the occasional flare, are very high. I understand disdain for the drugs. I never took medication for any reason before the RA. I always let my body heal itself, as it was designed to do. And if I had not watched my mother suffer, and had not known before I even got RA, that today's biological drugs truly are miracles and the closest thing we have to a cure, then maybe I would feel the way you do. But I know first hand that the medications will never harm me as much as the RA will. This group has a wonderful, diverse membership and I am glad you have joined us. Jennie > I'm particularly interested in learning how to live with this disease, > particularly to get some kind of psychological perspective. I've been > reading a fascinatng book called The HEaling Power of Illness by Thorwald > Dethlefsen which gives some insight into illness and this one in particular. > Do any of you feel that at some level we have chosen this illness and that > we can make different choices? I expect I'll offend some of you who have not > come across this concept by saying this; forgive me. Has anyone found a way > to live with RA that doesn't involve drugs? > > Many thanks > Adrienne CAmpbell > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Adrienne, Welcome to our group. We all wish there was a way to treat this disease without drugs, but unfortunatly for me it hasn't happened. A few lucky people have found that food allergies were the cause of the inflammation and dietary changes improved their arthritis but aren't a cure. Supplements have shown to help inflammation but not cure the disease. The meds we take also don't cure the disease but have the potential to put us in drug induced remission. The problem with trying non-drug routes, is that this disease can erode joints without you being aware of what is happening until it is to late. RA drugs can slow the progression of the erosion. Early treatment with RA drugs has the best chance of causing remission. As the owner of this group, I've read many accounts of the start of this disease, and think the theory of Thorwald Dethlefsen that symptoms are expressions of psychological conflicts, and can only be healed when we become aware of what is behind the problem, is full of bunk. Many very active, happy, successful people have been struck with this disease overnight. How can this theory apply to infants and children that are affected with this disease? I know he also believes in reincarnation, so I guess he believes we chose these diseases in previous lives. a > Hi > I'm Adrienne from England. I was diagnosed with RA a year ago and in that > time I've been trying to make it go away through changing my diet radically > and taking supplements like fish oils, vitamins and glucosamine. > > The attacks have reduced in severity and length but I've just recently > accepted that RA is here to stay. > > I'm particularly interested in learning how to live with this disease, > particularly to get some kind of psychological perspective. I've been > reading a fascinatng book called The HEaling Power of Illness by Thorwald > Dethlefsen which gives some insight into illness and this one in particular. > Do any of you feel that at some level we have chosen this illness and that > we can make different choices? I expect I'll offend some of you who have not > come across this concept by saying this; forgive me. Has anyone found a way > to live with RA that doesn't involve drugs? > > Many thanks > Adrienne CAmpbell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Welcome, Adrienne! Sorry about your RA diagnosis. In cases of true RA, especially those which are characterized by aggressive, erosive disease, it would be foolhardy to abandon DMARDs as part of therapy. Although I'm not familiar with Dethlefsen's theory or book, no, I don't believe that " at some level we have chosen this illness. " As a pointed out, very young children suffer from RA and other terrible diseases. How would that sort of notion apply to them? In general, I believe the " blame the patient " theories are quite harmful. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New to group > Hi > I'm Adrienne from England. I was diagnosed with RA a year ago and in that > time I've been trying to make it go away through changing my diet radically > and taking supplements like fish oils, vitamins and glucosamine. > > The attacks have reduced in severity and length but I've just recently > accepted that RA is here to stay. > > I'm particularly interested in learning how to live with this disease, > particularly to get some kind of psychological perspective. I've been > reading a fascinatng book called The HEaling Power of Illness by Thorwald > Dethlefsen which gives some insight into illness and this one in particular. > Do any of you feel that at some level we have chosen this illness and that > we can make different choices? I expect I'll offend some of you who have not > come across this concept by saying this; forgive me. Has anyone found a way > to live with RA that doesn't involve drugs? > > Many thanks > Adrienne CAmpbell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Sue, Just out of curiousity - what disease would you have picked? I can think of tons that are worse than RA, particularly those that can kill you or one's that there are no effective treatments for. I would not want to have gotten RA 15 years ago, but I don't think getting it today is nearly as bad as some other things I could have gotten. Now, if I had to choose I would have not gotten anything. That is for sure. But I am not sad about getting it (not all the time at least). RA has forced me to re-assess every single thing in my life and determine what really is important to me. As a result, I am much happier than I was a year and 1/2 ago. Jennie If there had been choice involved, I would have chosen some other > disease. > Quote Link to comment Share on other sites More sharing options...
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