Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 Hi Sylvia: Mom had a bowel resection years ago because the bowel was so diseased. She has been doing very well every since. I had to have a liver biopsy because my liver is enlarged (called fatty liver) and they think it is due to Prednisone. My liver enzymes were elevated and they wanted to make sure it was not from the MTX. My RD would not continue me on MTX until he knew it was not harming my liver. Yes, these tests become annoying. I even hate going to the dr. I get sick of it all but then I realize it is what is keeping me going and preventing the progression of RA and keeping me alive so.................. Like I said, most of my intestinal problems settled down once I started injecting MTX rather than taking it orally. I am also taking Prilosec which helps me alot. Take care, Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 Sylvia, You are right about that commercial. I was a little annoyed when I saw it, but I guess we have to remember the drug company is putting it out. It certainly doesn't tell what RA is like. ---------- > From: booper51@... > egroups > Subject: [ ] Re: Update on test > Date: Monday, September 11, 2000 10:40 PM > > > Thanks for the hugs June. I could use one just about now. Not a > good day today, all I do is feel very weepy. I saw the TV commercial > for Remicade today and it tore me up because of what everyone in this > group is going through. Not how they dipict it on TV though. > > My PT Dr has stopped my PT for now until I see another Dr for a > second opinion. I never got a first one from my RD!!!! I have an > appointment to see a new PCP on Wed. and will take it from there. If > I have to, I will go to New York City to the Center for Joint > Deseases. Anyone been there? If so, Please let me know. > > Regards, > Sylvia > > > > Hi Sylvia,glad this test is over with for you. As for the diagnosis > of > > diverticulitis,this is a hereditary disease and I have it,my two > > sons,one of my sisters.I have had the bowel resection as well as my > > eldest son so I do know a fair bit about this disease if you have > any > > questions.When I had the colonoscopy I insisted they put me out for > it > > but I saw lots of patients going in and coming out like it was > nothing. > > Take care. > > Hugs > > June > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 << Not only for her but for myself as well. That one day I would have hands like that. Back then I didn't know what I know now. There is hope. We must never be discouraged. Sylvia >> Sylvia, My hubby didn't realize (thanks to my MIL, but we want go there) how serious RA is, until one night we went out to eat. There was a lady there, guessing I'd say in her late 60's. I looked at her hands and right off knew she had RA (she was also in a wheelchair). My hubby saw her, and it really scared him. He told me he never knew how serious the damage and pain could be. He used to be very unsupportive (and still has his moments) but after seeing her I think he realized everything I had told him was really true, not just Tery (MIL again) being lazy and not wanting to do what ever. Even now I'm having a hard time but I know there are others who are much worse off than me. Others like Esther, Rainey Sue and who I admire and respect so much, I consider myself lucky. Tery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 When I was 14 and going through the gold shots, I would have my labs done then sit in the waiting room up to 2 hours doing homework, or reading. But a lot of the time I would people watch. I LOVE to watch people. There was this lady sitting at an angle behind me. She had long dark blond hair and I will never forget as I watched her rub her hands together and the look on her face as she examined them. They were all bent and crooked and I thought at any moment she'd cry. I think that may have been the start of my understanding of what was going to happen to me. I didn't know what arthritis was, but somehow I knew this lady, probably 30 or so, had RA. Like me. ~Rainy Sue > , > Think about the MODEL they use for this commercial. Her hands are > not twisted and crippled. This is what they need to show in these > commercials. > A few years ago I saw a woman in the Dr's office with crippled and > distorted hands. I looked at her as she struggled to get her > insurance card of her purse and had to turn away as I cried. Not > only for her but for myself as well. That one day I would have hands > like that. Back then I didn't know what I know now. There is hope. > We must never be discouraged. > Sylvia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2000 Report Share Posted September 12, 2000 I remember when my great grandmother was alive. she died when i was 13 or 14. she had arthritis so bad that it crippled her hands and made her legs bowed. she lost about 5 or 6 inches off her height due to the bowing. she use to walk to the cemetary across the road where my great grandfather was buried everyday in the rain or in the snow no matter how long it took her. she had her cane and bundled up real warm. i remember seeing her in the summer and walk with her. she had on a blue dress with purple flowers on it and her white apron. We always had wonderful talks on those long trips to the cemetery. she died from a fall that she had in her house. she was walking to the living room and tripped in the hallway(thats where my grandparents found her) she had a swollen area near the temple and she had brusied her brain and at the age of 88 yrs old the family decided it was better to let her go be with the love of her life. she was never dx with RA or any other arthritis. to her it was just a part of growing old but if i had to say what form i would say for sure RA maybe even osto. When ever i think about Nanny(thats what we called her) i remember a beautiful kind hearted woman who was a very tough and determined person to walk everyday to say hello to the man she spent her life with. Kind of romantic i think. i have know idea why i wanted to share this with all of you but to me i think there is a part of nanny in each of you. shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Sylvia, I agree and I know the insurance company is trying to sell their drug. They should be realistic though. They should show RA for what it is. I have to wonder if a commercial like this doesn't hurt people trying to get disability. SS sees this and thinks there is a cure, when that is not the case at all. ---------- > From: booper51@... > egroups > Subject: [ ] Re: Update on test > Date: Tuesday, September 12, 2000 12:57 PM > > > , > Think about the MODEL they use for this commercial. Her hands are > not twisted and crippled. This is what they need to show in these > commercials. > A few years ago I saw a woman in the Dr's office with crippled and > distorted hands. I looked at her as she struggled to get her > insurance card of her purse and had to turn away as I cried. Not > only for her but for myself as well. That one day I would have hands > like that. Back then I didn't know what I know now. There is hope. > We must never be discouraged. > Sylvia > > > > > Hi Sylvia,glad this test is over with for you. As for the > diagnosis > > > of > > > > diverticulitis,this is a hereditary disease and I have it,my two > > > > sons,one of my sisters.I have had the bowel resection as well > as my > > > > eldest son so I do know a fair bit about this disease if you > have > > > any > > > > questions.When I had the colonoscopy I insisted they put me out > for > > > it > > > > but I saw lots of patients going in and coming out like it was > > > nothing. > > > > Take care. > > > > Hugs > > > > June > > > > > > > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > > > http://www.rasupport.webprovider.com/ > > > Our chat room: www.delphi.com/RheumatoidArth1/start > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 i wish people would see the visual in jesse. He has one wrist deformed and a club foot that is reverting due to the illness and that leg is thiner and shorter then the other. he is 11yrs old and is the size of a 7yr old weighing in at 55 pounds and only 51 inches tall. When you look at him there are some things that show people that he is ill but they still refuse to see what the problem is. Strangers will look at him and i hear them talking among themselves. Usually like she doesn't feed that child or his parents must abuse him look at his hand or like at the pool when they get a real good look at his body, you should hear what they say. i am lucky though i have friends that say to them that jesse is a brave and tough kid and he has a mom that loves him alot and sort of tells them what we have to deal with. When jesse was a baby it was worse for me. He had a cast on his left leg at 5 hours old for his club foot. Man taking him shopping was the worst. I had a woman come up behind me while i was in at the register(mind you i worked at this store too) and say to her husband look that woman broke her baby's leg. she should be arrested. She said this very loud and the store was very busy(easter weekend sale). I was so upset and the husband say the pain in my face and was telling her to shut up and and she just kept getting louder and louder and she was grabbing people and pointing at me saying she broke her baby's leg over and over again. I finally couldn't ignore her any more and i very loudly told her my son was born with a birth defect and this was his treatment and if she would like i would be more then willing to call the police and have her arrested if she didn't shut up. well that stunned her for a moment but she started in again and then her husband shoved their cart away grabbed her by the arm and told her to shut up and go with him, she was shocked that he stood up to her i guess cause the look on her face was priceless. He went on to say that this was the final straw, he had enough of her and her evilness and was going to call his attorney, that he was filing for divorce. He came over to me and said sorry about a dozen times and wished me and jesse good luck. She was running after him begging him not to leave. He just kept walking. A few months later i was working and guess who goes through my line at the store but that same woman. She actually told me she waited in my line so she could talk to me. she said that it was part of HER TREATMENT to say she was sorry. she and her husband were seperated and she was getting counsualing for herself. said that her husband was true to his word he called the attorney and filed and she realized just how mean she was and wanted to change. Guess what iam trying to say is that some people are only going to believe what they want to believe until it happens to them. Even with physical deformities some people are just going to look past it. I thank god that most people i meet aren't like that but i sure have met alot that do. the point is most of the good people out weigh the bad ones. I have to learn not to take it personal either. i know that i didn't make jesse that way he is. i don't hurt him or starve him and i give my whole life to my kids. but it sure isn't easy to remember all that when someone is thinking that you abuse your child. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Sorry, I work for the government so I use way too many acronyms. MIL = mother in law. Tery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Sylvia, I agree that is why it takes so long to get approved. I have been in reconsideration for over a year. I can tell you right now my case is sitting in burg. I saw the SS doctor (fourth one) in June, and still nothing. Maybe they are busy watching the remicade commercials. ---------- > From: booper51@... > egroups > Subject: [ ] Re: Update on test > Date: Tuesday, September 12, 2000 11:32 PM > > > , Tell me, what is SS doing watching TV commercials instead of > doing their jobs? That is probably why everyone gets rejected the > first time for disability benefits. What do you think? > Sylvia > > > > > > > > Hi Sylvia,glad this test is over with for you. As for the > > > diagnosis > > > > > of > > > > > > diverticulitis,this is a hereditary disease and I have > it,my two > > > > > > sons,one of my sisters.I have had the bowel resection as > well > > > as my > > > > > > eldest son so I do know a fair bit about this disease if > you > > > have > > > > > any > > > > > > questions.When I had the colonoscopy I insisted they put me > out > > > for > > > > > it > > > > > > but I saw lots of patients going in and coming out like it > was > > > > > nothing. > > > > > > Take care. > > > > > > Hugs > > > > > > June > > > > > > > > > > > > > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > > > > > http://www.rasupport.webprovider.com/ > > > > > Our chat room: www.delphi.com/RheumatoidArth1/start > > > > > > > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > > > http://www.rasupport.webprovider.com/ > > > Our chat room: www.delphi.com/RheumatoidArth1/start > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 wow esther wears the same size shoe as jesse does now. yes drs have told me that JRA stunts the growth in children. His dr now is waiting to start him on growth hormones but has to be off the steroids (presidone) for over a year before they can start him on it. so we have to wait until next spring. the steroids also stunt growth in children too so he is really wanting jesse to stay off the steroids. I sure wish enbrel was there for esther when she was little too!!!!! shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Hi , First of all I want you to know how extremely happy I am for that the Enbrel is working so well . I sure wish it was available when Esther was a child! I think that all children who develope JRA at a young age end up small. Esther is only 4 foot 10 inches tall. My two sons are both over 6 foot tall, I am 5 foot 5 inches and my husband is 6 foot 2 inches tall. Esther also has very tiny hands and feet........she only wears a size 2 1/2 shoe size. I do believe that JRA stunts their growth. ~ Carol ~ ----- Original Message ----- From: <12372101@...> < egroups> Sent: Wednesday, September 13, 2000 8:50 AM Subject: Re: [ ] Re: Update on test > > i wish people would see the visual in jesse. He has one wrist deformed and a > club foot that is reverting due to the illness and that leg is thiner and > shorter then the other. he is 11yrs old and is the size of a 7yr old weighing > in at 55 pounds and only 51 inches tall. > > When you look at him there are some things that show people that he is ill > but they still refuse to see what the problem is. Strangers will look at him > and i hear them talking among themselves. Usually like she doesn't feed that > child or his parents must abuse him look at his hand or like at the pool when > they get a real good look at his body, you should hear what they say. i am > lucky though i have friends that say to them that jesse is a brave and tough > kid and he has a mom that loves him alot and sort of tells them what we have > to deal with. > > When jesse was a baby it was worse for me. He had a cast on his left leg at 5 > hours old for his club foot. Man taking him shopping was the worst. I had a > woman come up behind me while i was in at the register(mind you i worked at > this store too) and say to her husband look that woman broke her baby's leg. > she should be arrested. She said this very loud and the store was very > busy(easter weekend sale). I was so upset and the husband say the pain in my > face and was telling her to shut up and and she just kept getting louder and > louder and she was grabbing people and pointing at me saying she broke her > baby's leg over and over again. I finally couldn't ignore her any more and i > very loudly told her my son was born with a birth defect and this was his > treatment and if she would like i would be more then willing to call the > police and have her arrested if she didn't shut up. well that stunned her for > a moment but she started in again and then her husband shoved their cart away > grabbed her by the arm and told her to shut up and go with him, she was > shocked that he stood up to her i guess cause the look on her face was > priceless. He went on to say that this was the final straw, he had enough of > her and her evilness and was going to call his attorney, that he was filing > for divorce. He came over to me and said sorry about a dozen times and wished > me and jesse good luck. She was running after him begging him not to leave. > He just kept walking. > A few months later i was working and guess who goes through my line at the > store but that same woman. She actually told me she waited in my line so she > could talk to me. she said that it was part of HER TREATMENT to say she was > sorry. she and her husband were seperated and she was getting counsualing for > herself. said that her husband was true to his word he called the attorney > and filed and she realized just how mean she was and wanted to change. > > Guess what iam trying to say is that some people are only going to believe > what they want to believe until it happens to them. Even with physical > deformities some people are just going to look past it. > > I thank god that most people i meet aren't like that but i sure have met alot > that do. the point is most of the good people out weigh the bad ones. I have > to learn not to take it personal either. i know that i didn't make jesse that > way he is. i don't hurt him or starve him and i give my whole life to my > kids. but it sure isn't easy to remember all that when someone is thinking > that you abuse your child. > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Funny! I love my mom in law to death! But, my sister has her problems with hers... and her acronym is not MIL... tjones500@... wrote: > > [Click Here!] [eGroups] My Groups | Main Page | Start a new group! > > Sorry, I work for the government so I use way too many acronyms. MIL > = > mother in law. Tery > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 , You have a very good point here! Suggestion. Call and get all the info you can on Remicade and send it to them. Print up stuff from the Internet that tells what it is all about and what the arthritis is all about. It can't hurt. ~Rainy > Sylvia, > I agree and I know the insurance company is trying to sell their drug. > They should be realistic though. They should show RA for what it is. I > have to wonder if a commercial like this doesn't hurt people trying to get > disability. SS sees this and thinks there is a cure, when that is not the > case at all. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 For me, I was only 14 years old. And no one explained to me WHAT juvenile arthritis would do to me. Here I was with the disease, and didn't know. So it makes sense that others who don't know get the wrong idea. That is why it is so important to spread awareness. " Show, don't tell. " Like they say in writing. People understand " pictures " better. The same way children learn. ~Rainy Sue > Why does it have to be a visual thing in order for people to really > understand? > Sylvia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 Very true, it does. I remember that discussed a little when I was diagnosed. But at 13 I was almost done growing. So I got lucky and I don't look as though my growth was stunted. BUT, over the years the damage has " shortened " me. I was 5'4 1/4, and who knows what I am now. I won't let them measure me. I just tell them, " I know I am short, it doesn't matter, " and smile. =) they smile. ~Rainy Sue > Hi , > > First of all I want you to know how extremely happy I am for that > the Enbrel is working so well . I sure wish it was available when Esther > was a child! > > I think that all children who develope JRA at a young age end up small. > Esther is only 4 foot 10 inches tall. My two sons are both over 6 foot > tall, > I am 5 foot 5 inches and my husband is 6 foot 2 inches tall. > > Esther also has very tiny hands and feet........she only wears a size 2 > 1/2 > shoe size. I do believe that JRA stunts their growth. > > ~ Carol ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2000 Report Share Posted September 16, 2000 Dear : I just read an email you wrote about your son . I am so sorry that the woman in the story was so nasty to you. It is such a shame that some people have to be that way. I feel very bad that this happened. I pray to God that you will feel better about this in time. My name is Colletti. I have RA and a few other things, but I manage okay usually. Hope things are going okay for you now. Where do you live? I live in New Jersey. Sincerely, Anjillah@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2000 Report Share Posted September 16, 2000 , jesse is doing very well now. his liver enzymes are a bit elvated could be from the mtx but we have had strep throat going around the house for the past 2 weeks too. Other then that jesse is great. That stroy i was telling was many years ago but it still happens because of his size and he is so skinning. some people are just that way. We live in Mobile Alabama now but we also lived in FL and born and raised in Vermont. Can't say that i have spent much time in Jersey but sure did meet alot of people from there when i lived in FL. Do you live in the city? I am not a big city lover. Mobile is pretty big. guess i am still a new england girl at heart. Take care, shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2000 Report Share Posted September 16, 2000 Dear : Hi, how are you doing. I was just reading this email you wrote in and I was wondering is you got accepted by SS yet? I hope you did. I have SS for three years now, I have RA, OA, osteoporosis, sciactica, gout, spinal stenosis, asthma and a kidney transplant for 14 years. Some how I manage. I use herbs, and homeopathy, and sometimes some percocet when I have to. I can't take any of the other RA drugs due to the kidney transplant. I live in New Jersey. Where do you live? Sincerely, Colletti Anjillah@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2000 Report Share Posted September 17, 2000 Dear : It was nice to hear from you. I live in Linden, NJ. It is really kind of a small town. It is not really very big. There are a good amount of people living here though. I am glad is okay. That was some story you wrote. I guess some people are just that way. It was a shame that happened though. Mobile must be near ville, Fla. My sister-in-law lives in Orange Park, Florida. It is right outside of ville. My brother passed away 9 years ago. I keep in touch with my s-i-l with the computer quite often. Practically every day. She has a married son, my nephew, and they have 2 children. Hope to hear from you again Sincerely, Anjillah@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2000 Report Share Posted September 17, 2000 , ville is about 7 or 8 hours from mobile but i did live in Daytona for about a year and thats about 3 hours from jacksonville. Thats where my ex husband lives. The kids go see him about 2 times a year unless he comes over our way and spends a couple of days with me and my boyfriend and the kids. He and i are great friends and the b/f doesn't mind that he stays with us. If my ex didn't work so much then he could see the kids more often but in the resturant business, the work never stops. My brother also passed away. In july it was 4 yrs ago. He left a young son that lives with my mom in vermont. he has lots of problems going on in his little head. My brother's death was from foul play(drug over dose) and my little nephew was there and had to spend 14 hours or more locked in the apartment with his fathers body. He may have seen who was in the house but has blocked it all out. any way getting back to the topic. Sounds like you live in just the right size town for me. Not real big but not real small either. Mobile is so big. I don't like. To many schools in this county which leads to school violence which scares me to no end. Most of the high schools don't even have security. How are the schools in your area? We have had one knife attack and one shooting and one teacher attack in our county that doesn't even include how many teachers have abused children in the schools here but that doesn't get to much media cause the schools don't want to look bad. I can say from experience that teachers in the grade schools use physical disapline and i am totally against a teacher touching my children to punish them. If my kids need a spanking then iam the one to do it not that i spank them much. gee my oldest son is bigger then me. i can't imagine trying to put him over my knee to spank him. any way sorry for going on and on. I have had my pain meds for the night and i am a bit goofy. hope you are feeling good. shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 Hi : I had written to you and you wrote back to me on 9/17/00. Sorry I didn't get back to you sooner than this. I have gotten behind on my email because I have trouble with my joints in my fingers due to the R/A. Between my fingers and my back the pain does slow me down a bit. Otherwise I try to keep busy taking care of my cats and doing some housework whenever I can. I have no children so I don't really know how the schools are around here. I haven't heard of too much violence on the TV about this area but then not everything is televised. Hope you are as well as can be expected. Sincerely, Quote Link to comment Share on other sites More sharing options...
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