Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 hi tara, welcome to the list!! i am glad that you are looking into the topic of vaccines, as most parents do not even know that there are potential problems, let alone are they able to make the jump from blindly following what their ped tells them to do. it is a difficult journey on which you are about to embark--but a very important journey nonetheless...there is a wealth of knowledge on this list--lots of off-topic thoughts too and it does generate A LOT of email, but you may learn a lot from them too. hope you can keep up. looking forward to hearing from you in the future--ask away with you rquestions and concerns... personally, i won't be going forward with any vaxes at all for either of my boys (my oldest, elliott (almost 7), is fully vaxed up to age 5 and my baby, sawyer (15 months) had his first round at 2 months and then i decided no more--it took me awhile to be able to definately decide that they would never get another, but i am so glad i did. as far as the Hib vax, i'd skip it if i were you--it's not all that common and even if, GOd forbid, your child did contract meningitis, you could always take action at that time to get him/her well. but personally, i would rather treat individual illnesses as they come up (if they ever do at all) rather than vaccinating for everything in the unlikely event that my child gets one of these diseases. then if they do get a childhood illness, in most cases they wouldn't have such a severe reaction as to lead to complications, etc. well, i'll take my chances with what we come across naturally... good luck in deciding what is best for YOUR family and again, welcome!! brigit, in albany 0 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Hi Tara...glad to see you here. There have been alot of new people joining lately (I've only been on this list for about 3 or 4 months), and you will learn so much VALUABLE information here, that you did not know before. (And that you wish you had). Anyway, I truly believe that vaccines put your child at much more risk for adverse reactions, and poorer overall health, than the diseases represent themselves. If you are THAT worried about HIB (it is very RARE for a child to suffer the serious risks of this virus/disease) you would do better to keep your baby under lock and key for 6 months, than to deal with a lifetime of injuries that the vaccines could produce. Check out Sheris' (the co-moderators) website for more info on this and all of the other vaccines. I myself was EXTREAMLY worried about tetnus, because we own horses, have some junk piles on the property, etc, and let my son be vaccinated twice with just the tetnus vaccine. I then joined this list, and although my son suffered no ill effects, (that I know of), I wish that I had never had him vaccinated at all... Sharon, Quakertown PA Introducing myself... > My name is Tara. I am mother to 3 children- , who is 7, > , who is 2, and Sebastian, who is 6 1/2 weeks. My oldest two > are vaccinated up to date, but after hearing some of the things about > vaccines on my cloth diapering lists, I am hesitant to vaccinate > Sebastian. I am here to learn more about vaccines so that we can decide > what (if any) vaccines to give to Sebastian. Neither nor > received the varicella, as had chicken pox right before > the vaccine came out, and I refused it for . So that one is > definitely NOT one we will give to Sebastian. However, our doctor > recommended at least giving Sebastian the HIB because he said that it is > dangerous in children under 6 months. Any thoughts on this? > > Anyway, I look forward to getting to know all of you. > > -- > Tara Ann > " I have never let my schooling interfere with my education. " > Mark Twain > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 I agree with you Sharon. And if I remember it right the HIB does not even " work " after the first shot but only after the second or so... I don't know why the doctors keep putting their fingers on that shot. They tried to talk me into giving that shot to my twins under the pretense that the doctor had seen cases of HIB in breastfed babies. I still didn't give in and later I found out that there hadn't been any cases reported in the whole area. So I started wondering... In addition to that: we never got the vaccine when we were small?! We didn't get sick either. Especially with HIB a good immune system should prevent infection. That is my opinion. Tetanus has been one of my worries to. I have considered giving it to my twins, but then I had a dream that stronly advised me not to do so. My daughter is suffering from eczema and God only knows what would happen to her if she were given shots, any shots. Just my two cents. a. Introducing myself... > > > > My name is Tara. I am mother to 3 children- , who is 7, > > , who is 2, and Sebastian, who is 6 1/2 weeks. My oldest two > > are vaccinated up to date, but after hearing some of the things about > > vaccines on my cloth diapering lists, I am hesitant to vaccinate > > Sebastian. I am here to learn more about vaccines so that we can decide > > what (if any) vaccines to give to Sebastian. Neither nor > > received the varicella, as had chicken pox right before > > the vaccine came out, and I refused it for . So that one is > > definitely NOT one we will give to Sebastian. However, our doctor > > recommended at least giving Sebastian the HIB because he said that it is > > dangerous in children under 6 months. Any thoughts on this? > > > > Anyway, I look forward to getting to know all of you. > > > > -- > > Tara Ann > > " I have never let my schooling interfere with my education. " > > Mark Twain > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 They say that you have a better chance of getting struck by lightening than contracting tetanus...with that in mind, the next time you or your children get struck by a lightening bolt, then maybe it is time to consider the shot. Until then... ps. Don't stand under any trees, and thoroughly wash all boo-boo's... Sharon, Quakertown PA Introducing myself... > > > > > > > My name is Tara. I am mother to 3 children- , who is 7, > > > , who is 2, and Sebastian, who is 6 1/2 weeks. My oldest two > > > are vaccinated up to date, but after hearing some of the things about > > > vaccines on my cloth diapering lists, I am hesitant to vaccinate > > > Sebastian. I am here to learn more about vaccines so that we can decide > > > what (if any) vaccines to give to Sebastian. Neither nor > > > received the varicella, as had chicken pox right before > > > the vaccine came out, and I refused it for . So that one is > > > definitely NOT one we will give to Sebastian. However, our doctor > > > recommended at least giving Sebastian the HIB because he said that it is > > > dangerous in children under 6 months. Any thoughts on this? > > > > > > Anyway, I look forward to getting to know all of you. > > > > > > -- > > > Tara Ann > > > " I have never let my schooling interfere with my education. " > > > Mark Twain > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 Your child may be more at risk if in daycare and formula fed, but if he's at home and breastfed, the risk is much much lower. My older two never got this vaccine and did just fine. >From: Tara Ann <schmoofy@...> >Reply-Vaccinationsegroups >Vaccinationsegroups >Subject: Introducing myself... >Date: Wed, 24 Jan 2001 16:50:24 -0500 > >My name is Tara. I am mother to 3 children- , who is 7, >, who is 2, and Sebastian, who is 6 1/2 weeks. My oldest two >are vaccinated up to date, but after hearing some of the things about >vaccines on my cloth diapering lists, I am hesitant to vaccinate >Sebastian. I am here to learn more about vaccines so that we can decide >what (if any) vaccines to give to Sebastian. Neither nor > received the varicella, as had chicken pox right before >the vaccine came out, and I refused it for . So that one is >definitely NOT one we will give to Sebastian. However, our doctor >recommended at least giving Sebastian the HIB because he said that it is >dangerous in children under 6 months. Any thoughts on this? > >Anyway, I look forward to getting to know all of you. > >-- > Tara Ann > " I have never let my schooling interfere with my education. " > Mark Twain > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 Awesome there are quite a few of us adults or young adults with Arthritis on the list serve who try to be supportive to the parents of kids with the disease and get some support as well. We also have a Young adult list serve to that might would like to have you there AJAO Young Adults and one of the ladies there is also doing a blog but for the Arthritis foundation on various issues too. I love that your doing different stories. We sure need that. Do you have pictures too??? I would love to see pictures with these expereinces and things. Sad to say that now only in the last few years have we gotten a lot more in advanced but cortisone.. prednisone.. steriods were still the ideal treatment most of the time and still now the big thing that is used... however a lot mroe choices now with the biologics... but yeh those steriods are nasty things .... but the disease can be too especialy with systemic whihc can be particulary stubborn anyways welcome Issadora On Wed, May 6, 2009 at 11:23 AM, ludey33 <ludey33@...> wrote: > > > Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid > Arthritis for 43 years. I have the form that used to be known as Still's > Disease...now it's better known as Systemic. I decided to join the Juvenile > Arthritis Forum as I think I can offer parents and even children living with > the disease hope. I grew up with the disease at a time when treatments were > limited...I was on oral Cortisone for 9 1/2 years. Without the Cortisone, I > may have never walked again but, as wonderful as it seemed, the drug had > side effects and I didn't realize until years later how much irrevesible > damage it had actually caused. > I recently started a blog where I am telling stories about growing up with > Juvenile Arthritis. I just started so i only have a couple of stories so > far, but there's more to come soon. You can visit my blog at: > http://oobit.synthasite.com/ > I just want to offer hope and insight into this disease. I've lived my > entire life with JA/JRA. So...I have many experiences to share that were a > part of living with and growing up with this disease; family issues, > treatments, medications, doctors, school, being a teenager, self-esteem, > dating, going to college, marriage, sex, whether or not I could have > children, working and just living each and every day with Juvenile > Rheumatoid Arthritis. > I know that I will learn a great deal from this forum. And...I hope that I > can help at least one person. I will answer any questions about living with > this disease openly and honestly...all you have to do is just ask. > > > -- " How exactly does one become a butterfly? You must want to fly so badly that you are willing to give up being a caterpillar. " - Trina us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 Awesome there are quite a few of us adults or young adults with Arthritis on the list serve who try to be supportive to the parents of kids with the disease and get some support as well. We also have a Young adult list serve to that might would like to have you there AJAO Young Adults and one of the ladies there is also doing a blog but for the Arthritis foundation on various issues too. I love that your doing different stories. We sure need that. Do you have pictures too??? I would love to see pictures with these expereinces and things. Sad to say that now only in the last few years have we gotten a lot more in advanced but cortisone.. prednisone.. steriods were still the ideal treatment most of the time and still now the big thing that is used... however a lot mroe choices now with the biologics... but yeh those steriods are nasty things .... but the disease can be too especialy with systemic whihc can be particulary stubborn anyways welcome Issadora On Wed, May 6, 2009 at 11:23 AM, ludey33 <ludey33@...> wrote: > > > Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid > Arthritis for 43 years. I have the form that used to be known as Still's > Disease...now it's better known as Systemic. I decided to join the Juvenile > Arthritis Forum as I think I can offer parents and even children living with > the disease hope. I grew up with the disease at a time when treatments were > limited...I was on oral Cortisone for 9 1/2 years. Without the Cortisone, I > may have never walked again but, as wonderful as it seemed, the drug had > side effects and I didn't realize until years later how much irrevesible > damage it had actually caused. > I recently started a blog where I am telling stories about growing up with > Juvenile Arthritis. I just started so i only have a couple of stories so > far, but there's more to come soon. You can visit my blog at: > http://oobit.synthasite.com/ > I just want to offer hope and insight into this disease. I've lived my > entire life with JA/JRA. So...I have many experiences to share that were a > part of living with and growing up with this disease; family issues, > treatments, medications, doctors, school, being a teenager, self-esteem, > dating, going to college, marriage, sex, whether or not I could have > children, working and just living each and every day with Juvenile > Rheumatoid Arthritis. > I know that I will learn a great deal from this forum. And...I hope that I > can help at least one person. I will answer any questions about living with > this disease openly and honestly...all you have to do is just ask. > > > -- " How exactly does one become a butterfly? You must want to fly so badly that you are willing to give up being a caterpillar. " - Trina us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 I just read through the first story and love it.... sounds like you need to write a book we need more books about living with JRA>.. i always looked for such books when I became a teenager to help me but never found any on JRA> I found them on other illnesses and they did help me but ones like this... would have made a difference.. its just nice to read about other peoples lives and how they deal with different challenges i can somehow relate to... *hugs* Issadora On Thu, May 7, 2009 at 12:06 AM, Issadora <flyfreeizzie@...> wrote: > Awesome > > there are quite a few of us adults or young adults with Arthritis on the > list serve who try to be supportive to the parents of kids with the disease > and get some support as well. > > We also have a Young adult list serve to that might would like to have you > there AJAO Young Adults and one of the ladies there is also doing a blog but > for the Arthritis foundation on various issues too. > > I love that your doing different stories. We sure need that. Do you have > pictures too??? I would love to see pictures with these expereinces and > things. > > Sad to say that now only in the last few years have we gotten a lot more in > advanced but cortisone.. prednisone.. steriods were still the ideal > treatment most of the time and still now the big thing that is used... > however a lot mroe choices now with the biologics... but yeh those steriods > are nasty things .... but the disease can be too especialy with systemic > whihc can be particulary stubborn > > anyways welcome > > Issadora > > > On Wed, May 6, 2009 at 11:23 AM, ludey33 <ludey33@...> wrote: > >> >> >> Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid >> Arthritis for 43 years. I have the form that used to be known as Still's >> Disease...now it's better known as Systemic. I decided to join the Juvenile >> Arthritis Forum as I think I can offer parents and even children living with >> the disease hope. I grew up with the disease at a time when treatments were >> limited...I was on oral Cortisone for 9 1/2 years. Without the Cortisone, I >> may have never walked again but, as wonderful as it seemed, the drug had >> side effects and I didn't realize until years later how much irrevesible >> damage it had actually caused. >> I recently started a blog where I am telling stories about growing up with >> Juvenile Arthritis. I just started so i only have a couple of stories so >> far, but there's more to come soon. You can visit my blog at: >> http://oobit.synthasite.com/ >> I just want to offer hope and insight into this disease. I've lived my >> entire life with JA/JRA. So...I have many experiences to share that were a >> part of living with and growing up with this disease; family issues, >> treatments, medications, doctors, school, being a teenager, self-esteem, >> dating, going to college, marriage, sex, whether or not I could have >> children, working and just living each and every day with Juvenile >> Rheumatoid Arthritis. >> I know that I will learn a great deal from this forum. And...I hope that I >> can help at least one person. I will answer any questions about living with >> this disease openly and honestly...all you have to do is just ask. >> >> >> > > > > -- > " How exactly does one become a butterfly? You must want to fly so badly > that you are willing to give up being a caterpillar. " > - Trina us > -- " How exactly does one become a butterfly? You must want to fly so badly that you are willing to give up being a caterpillar. " - Trina us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 I just read through the first story and love it.... sounds like you need to write a book we need more books about living with JRA>.. i always looked for such books when I became a teenager to help me but never found any on JRA> I found them on other illnesses and they did help me but ones like this... would have made a difference.. its just nice to read about other peoples lives and how they deal with different challenges i can somehow relate to... *hugs* Issadora On Thu, May 7, 2009 at 12:06 AM, Issadora <flyfreeizzie@...> wrote: > Awesome > > there are quite a few of us adults or young adults with Arthritis on the > list serve who try to be supportive to the parents of kids with the disease > and get some support as well. > > We also have a Young adult list serve to that might would like to have you > there AJAO Young Adults and one of the ladies there is also doing a blog but > for the Arthritis foundation on various issues too. > > I love that your doing different stories. We sure need that. Do you have > pictures too??? I would love to see pictures with these expereinces and > things. > > Sad to say that now only in the last few years have we gotten a lot more in > advanced but cortisone.. prednisone.. steriods were still the ideal > treatment most of the time and still now the big thing that is used... > however a lot mroe choices now with the biologics... but yeh those steriods > are nasty things .... but the disease can be too especialy with systemic > whihc can be particulary stubborn > > anyways welcome > > Issadora > > > On Wed, May 6, 2009 at 11:23 AM, ludey33 <ludey33@...> wrote: > >> >> >> Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid >> Arthritis for 43 years. I have the form that used to be known as Still's >> Disease...now it's better known as Systemic. I decided to join the Juvenile >> Arthritis Forum as I think I can offer parents and even children living with >> the disease hope. I grew up with the disease at a time when treatments were >> limited...I was on oral Cortisone for 9 1/2 years. Without the Cortisone, I >> may have never walked again but, as wonderful as it seemed, the drug had >> side effects and I didn't realize until years later how much irrevesible >> damage it had actually caused. >> I recently started a blog where I am telling stories about growing up with >> Juvenile Arthritis. I just started so i only have a couple of stories so >> far, but there's more to come soon. You can visit my blog at: >> http://oobit.synthasite.com/ >> I just want to offer hope and insight into this disease. I've lived my >> entire life with JA/JRA. So...I have many experiences to share that were a >> part of living with and growing up with this disease; family issues, >> treatments, medications, doctors, school, being a teenager, self-esteem, >> dating, going to college, marriage, sex, whether or not I could have >> children, working and just living each and every day with Juvenile >> Rheumatoid Arthritis. >> I know that I will learn a great deal from this forum. And...I hope that I >> can help at least one person. I will answer any questions about living with >> this disease openly and honestly...all you have to do is just ask. >> >> >> > > > > -- > " How exactly does one become a butterfly? You must want to fly so badly > that you are willing to give up being a caterpillar. " > - Trina us > -- " How exactly does one become a butterfly? You must want to fly so badly that you are willing to give up being a caterpillar. " - Trina us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 Thanks so much!! After reading the comment you left on my website...you should write a book...not me. If you ever choose to write or if you have written anything, I would love to read it. It's so good to know that you're not alone and never have been. Thanks so much!! Â Carolyn > >> >> >> Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid >> Arthritis for 43 years. I have the form that used to be known as Still's >> Disease...now it's better known as Systemic. I decided to join the Juvenile >> Arthritis Forum as I think I can offer parents and even children living with >> the disease hope. I grew up with the disease at a time when treatments were >> limited...I was on oral Cortisone for 9 1/2 years. Without the Cortisone, I >> may have never walked again but, as wonderful as it seemed, the drug had >> side effects and I didn't realize until years later how much irrevesible >> damage it had actually caused. >> I recently started a blog where I am telling stories about growing up with >> Juvenile Arthritis. I just started so i only have a couple of stories so >> far, but there's more to come soon. You can visit my blog at: >> http://oobit. synthasite. com/ >> I just want to offer hope and insight into this disease. I've lived my >> entire life with JA/JRA. So...I have many experiences to share that were a >> part of living with and growing up with this disease; family issues, >> treatments, medications, doctors, school, being a teenager, self-esteem, >> dating, going to college, marriage, sex, whether or not I could have >> children, working and just living each and every day with Juvenile >> Rheumatoid Arthritis. >> I know that I will learn a great deal from this forum. And...I hope that I >> can help at least one person. I will answer any questions about living with >> this disease openly and honestly...all you have to do is just ask. >> >> >> > > > > -- > " How exactly does one become a butterfly? You must want to fly so badly > that you are willing to give up being a caterpillar. " > - Trina us > -- " How exactly does one become a butterfly? You must want to fly so badly that you are willing to give up being a caterpillar. " - Trina us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 haha i just like to write poetry I'm looking forward to reading more of your story I just bought this book for real cheap on amazon.com about this girl with JRA who is now a adult but she is legally blind, from another country and she writes poetry too.. the book is HUGE... it's called ohh now i cant remember the name becausew itrs odd.. something about the endless bright star or something and its soooo thick. I can't wait to start reading it but I have a number of books im already reading as well as listening to on mp3 so have to hold off on that one.... Issadora On Thu, May 7, 2009 at 10:24 AM, Carolyn Rumple <ludey33@...> wrote: > > > Thanks so much!! After reading the comment you left on my website...you > should write a book...not me. If you ever choose to write or if you have > written anything, I would love to read it. It's so good to know that you're > not alone and never have been. Thanks so much!! > > Carolyn > > > > > >> > >> > >> Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid > >> Arthritis for 43 years. I have the form that used to be known as Still's > >> Disease...now it's better known as Systemic. I decided to join the > Juvenile > >> Arthritis Forum as I think I can offer parents and even children living > with > >> the disease hope. I grew up with the disease at a time when treatments > were > >> limited...I was on oral Cortisone for 9 1/2 years. Without the > Cortisone, I > >> may have never walked again but, as wonderful as it seemed, the drug had > >> side effects and I didn't realize until years later how much irrevesible > >> damage it had actually caused. > >> I recently started a blog where I am telling stories about growing up > with > >> Juvenile Arthritis. I just started so i only have a couple of stories so > >> far, but there's more to come soon. You can visit my blog at: > >> http://oobit. synthasite. com/ > >> I just want to offer hope and insight into this disease. I've lived my > >> entire life with JA/JRA. So...I have many experiences to share that were > a > >> part of living with and growing up with this disease; family issues, > >> treatments, medications, doctors, school, being a teenager, self-esteem, > >> dating, going to college, marriage, sex, whether or not I could have > >> children, working and just living each and every day with Juvenile > >> Rheumatoid Arthritis. > >> I know that I will learn a great deal from this forum. And...I hope that > I > >> can help at least one person. I will answer any questions about living > with > >> this disease openly and honestly...all you have to do is just ask. > >> > >> > >> > > > > > > > > -- > > " How exactly does one become a butterfly? You must want to fly so badly > > that you are willing to give up being a caterpillar. " > > - Trina us > > > > -- > " How exactly does one become a butterfly? You must want to fly so badly > that > you are willing to give up being a caterpillar. " > - Trina us > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 I bet your poems are great...put them on the web for everyone to see. I love to read poetry as I know a poet truly wears her heart on her sleeve nd the poem comes from the heart. My 18 yr. old niece is newly diagnosed with JRA and she writes poetry...about all things. She's one of those poets that can sometimes be out there...Lol! Seriously, her poems are good and it's a wonderful way to get your feelings out. I would truly love to read your poems. I will look that book up in Google. Google is great you cn find things with just a few keywords, so I'll try and find it...thanks for sharing that ith me. Â Carolyn > > > >> > >> > >> Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid > >> Arthritis for 43 years. I have the form that used to be known as Still's > >> Disease...now it's better known as Systemic. I decided to join the > Juvenile > >> Arthritis Forum as I think I can offer parents and even children living > with > >> the disease hope. I grew up with the disease at a time when treatments > were > >> limited...I was on oral Cortisone for 9 1/2 years. Without the > Cortisone, I > >> may have never walked again but, as wonderful as it seemed, the drug had > >> side effects and I didn't realize until years later how much irrevesible > >> damage it had actually caused. > >> I recently started a blog where I am telling stories about growing up > with > >> Juvenile Arthritis. I just started so i only have a couple of stories so > >> far, but there's more to come soon. You can visit my blog at: > >> http://oobit. synthasite. com/ > >> I just want to offer hope and insight into this disease. I've lived my > >> entire life with JA/JRA. So...I have many experiences to share that were > a > >> part of living with and growing up with this disease; family issues, > >> treatments, medications, doctors, school, being a teenager, self-esteem, > >> dating, going to college, marriage, sex, whether or not I could have > >> children, working and just living each and every day with Juvenile > >> Rheumatoid Arthritis. > >> I know that I will learn a great deal from this forum. And...I hope that > I > >> can help at least one person. I will answer any questions about living > with > >> this disease openly and honestly...all you have to do is just ask. > >> > >> > >> > > > > > > > > -- > > " How exactly does one become a butterfly? You must want to fly so badly > > that you are willing to give up being a caterpillar. " > > - Trina us > > > > -- > " How exactly does one become a butterfly? You must want to fly so badly > that > you are willing to give up being a caterpillar. " > - Trina us > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 wow, someone else in the family with JRA... and here they say it isnt genetic.. just some random idiopathic thing... gads... are you on facebook?? i have been posting some of my poetry there.... issadora On Thu, May 7, 2009 at 12:18 PM, Carolyn Rumple <ludey33@...> wrote: > > > I bet your poems are great...put them on the web for everyone to see. I > love to read poetry as I know a poet truly wears her heart on her sleeve nd > the poem comes from the heart. My 18 yr. old niece is newly diagnosed with > JRA and she writes poetry...about all things. She's one of those poets that > can sometimes be out there...Lol! Seriously, her poems are good and it's a > wonderful way to get your feelings out. I would truly love to read your > poems. I will look that book up in Google. Google is great you cn find > things with just a few keywords, so I'll try and find it...thanks for > sharing that ith me. > > > Carolyn > > > > > > > >> > > >> > > >> Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid > > >> Arthritis for 43 years. I have the form that used to be known as > Still's > > >> Disease...now it's better known as Systemic. I decided to join the > > Juvenile > > >> Arthritis Forum as I think I can offer parents and even children > living > > with > > >> the disease hope. I grew up with the disease at a time when treatments > > were > > >> limited...I was on oral Cortisone for 9 1/2 years. Without the > > Cortisone, I > > >> may have never walked again but, as wonderful as it seemed, the drug > had > > >> side effects and I didn't realize until years later how much > irrevesible > > >> damage it had actually caused. > > >> I recently started a blog where I am telling stories about growing up > > with > > >> Juvenile Arthritis. I just started so i only have a couple of stories > so > > >> far, but there's more to come soon. You can visit my blog at: > > >> http://oobit. synthasite. com/ > > >> I just want to offer hope and insight into this disease. I've lived my > > >> entire life with JA/JRA. So...I have many experiences to share that > were > > a > > >> part of living with and growing up with this disease; family issues, > > >> treatments, medications, doctors, school, being a teenager, > self-esteem, > > >> dating, going to college, marriage, sex, whether or not I could have > > >> children, working and just living each and every day with Juvenile > > >> Rheumatoid Arthritis. > > >> I know that I will learn a great deal from this forum. And...I hope > that > > I > > >> can help at least one person. I will answer any questions about living > > with > > >> this disease openly and honestly...all you have to do is just ask. > > >> > > >> > > >> > > > > > > > > > > > > -- > > > " How exactly does one become a butterfly? You must want to fly so badly > > > that you are willing to give up being a caterpillar. " > > > - Trina us > > > > > > > -- > > " How exactly does one become a butterfly? You must want to fly so badly > > that > > you are willing to give up being a caterpillar. " > > - Trina us > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 Yes, I am on Facebook. My name is Carolyn Perdue Rumple on there. Right, JRA is not inherited...I don't buy it. I actually have two nieces with JRA and a sister with Adult Rheuamtoid Arthritis. It is believed that my grandmother had JRA and she was born in 1912. She died at 18 years old...just 3 mos. after having my mommy. She had alot of health problems just like many children with JRA. I think we know more than the docs do sometimes..Lol!!  Carolyn  > > > > > >> > > >> > > >> Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid > > >> Arthritis for 43 years. I have the form that used to be known as > Still's > > >> Disease...now it's better known as Systemic. I decided to join the > > Juvenile > > >> Arthritis Forum as I think I can offer parents and even children > living > > with > > >> the disease hope. I grew up with the disease at a time when treatments > > were > > >> limited...I was on oral Cortisone for 9 1/2 years. Without the > > Cortisone, I > > >> may have never walked again but, as wonderful as it seemed, the drug > had > > >> side effects and I didn't realize until years later how much > irrevesible > > >> damage it had actually caused. > > >> I recently started a blog where I am telling stories about growing up > > with > > >> Juvenile Arthritis. I just started so i only have a couple of stories > so > > >> far, but there's more to come soon. You can visit my blog at: > > >> http://oobit. synthasite. com/ > > >> I just want to offer hope and insight into this disease. I've lived my > > >> entire life with JA/JRA. So...I have many experiences to share that > were > > a > > >> part of living with and growing up with this disease; family issues, > > >> treatments, medications, doctors, school, being a teenager, > self-esteem, > > >> dating, going to college, marriage, sex, whether or not I could have > > >> children, working and just living each and every day with Juvenile > > >> Rheumatoid Arthritis. > > >> I know that I will learn a great deal from this forum. And...I hope > that > > I > > >> can help at least one person. I will answer any questions about living > > with > > >> this disease openly and honestly...all you have to do is just ask. > > >> > > >> > > >> > > > > > > > > > > > > -- > > > " How exactly does one become a butterfly? You must want to fly so badly > > > that you are willing to give up being a caterpillar. " > > > - Trina us > > > > > > > -- > > " How exactly does one become a butterfly? You must want to fly so badly > > that > > you are willing to give up being a caterpillar. " > > - Trina us > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2009 Report Share Posted May 8, 2009 I put in your name and didnt come up with it... put in the first two .. first and middle name and it came up with several options... so not sure..... I'm Issadora Saeteng there if you wish to find me first! Issadora On Thu, May 7, 2009 at 12:40 PM, Carolyn Rumple <ludey33@...> wrote: > > > Yes, I am on Facebook. My name is Carolyn Perdue Rumple on there. > Right, JRA is not inherited...I don't buy it. I actually have two nieces > with JRA and a sister with Adult Rheuamtoid Arthritis. It is believed that > my grandmother had JRA and she was born in 1912. She died at 18 years > old...just 3 mos. after having my mommy. She had alot of health > problems just like many children with JRA. I think we know more than the > docs do sometimes..Lol!! > > > Carolyn > > > > > > > > > >> > > > >> > > > >> Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid > > > >> Arthritis for 43 years. I have the form that used to be known as > > Still's > > > >> Disease...now it's better known as Systemic. I decided to join the > > > Juvenile > > > >> Arthritis Forum as I think I can offer parents and even children > > living > > > with > > > >> the disease hope. I grew up with the disease at a time when > treatments > > > were > > > >> limited...I was on oral Cortisone for 9 1/2 years. Without the > > > Cortisone, I > > > >> may have never walked again but, as wonderful as it seemed, the drug > > had > > > >> side effects and I didn't realize until years later how much > > irrevesible > > > >> damage it had actually caused. > > > >> I recently started a blog where I am telling stories about growing > up > > > with > > > >> Juvenile Arthritis. I just started so i only have a couple of > stories > > so > > > >> far, but there's more to come soon. You can visit my blog at: > > > >> http://oobit. synthasite. com/ > > > >> I just want to offer hope and insight into this disease. I've lived > my > > > >> entire life with JA/JRA. So...I have many experiences to share that > > were > > > a > > > >> part of living with and growing up with this disease; family issues, > > > >> treatments, medications, doctors, school, being a teenager, > > self-esteem, > > > >> dating, going to college, marriage, sex, whether or not I could have > > > >> children, working and just living each and every day with Juvenile > > > >> Rheumatoid Arthritis. > > > >> I know that I will learn a great deal from this forum. And...I hope > > that > > > I > > > >> can help at least one person. I will answer any questions about > living > > > with > > > >> this disease openly and honestly...all you have to do is just ask. > > > >> > > > >> > > > >> > > > > > > > > > > > > > > > > -- > > > > " How exactly does one become a butterfly? You must want to fly so > badly > > > > that you are willing to give up being a caterpillar. " > > > > - Trina us > > > > > > > > > > -- > > > " How exactly does one become a butterfly? You must want to fly so badly > > > that > > > you are willing to give up being a caterpillar. " > > > - Trina us > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2009 Report Share Posted May 8, 2009 I found you on FBÂ and put in a friend's request...you should get it when you log on. Â Thanks!! Carolyn > > > > > > > >> > > > >> > > > >> Hi!! My name is Carolyn and I have lived with Juvenile Rheumatoid > > > >> Arthritis for 43 years. I have the form that used to be known as > > Still's > > > >> Disease...now it's better known as Systemic. I decided to join the > > > Juvenile > > > >> Arthritis Forum as I think I can offer parents and even children > > living > > > with > > > >> the disease hope. I grew up with the disease at a time when > treatments > > > were > > > >> limited...I was on oral Cortisone for 9 1/2 years. Without the > > > Cortisone, I > > > >> may have never walked again but, as wonderful as it seemed, the drug > > had > > > >> side effects and I didn't realize until years later how much > > irrevesible > > > >> damage it had actually caused. > > > >> I recently started a blog where I am telling stories about growing > up > > > with > > > >> Juvenile Arthritis. I just started so i only have a couple of > stories > > so > > > >> far, but there's more to come soon. You can visit my blog at: > > > >> http://oobit. synthasite. com/ > > > >> I just want to offer hope and insight into this disease. I've lived > my > > > >> entire life with JA/JRA. So...I have many experiences to share that > > were > > > a > > > >> part of living with and growing up with this disease; family issues, > > > >> treatments, medications, doctors, school, being a teenager, > > self-esteem, > > > >> dating, going to college, marriage, sex, whether or not I could have > > > >> children, working and just living each and every day with Juvenile > > > >> Rheumatoid Arthritis. > > > >> I know that I will learn a great deal from this forum. And...I hope > > that > > > I > > > >> can help at least one person. I will answer any questions about > living > > > with > > > >> this disease openly and honestly...all you have to do is just ask. > > > >> > > > >> > > > >> > > > > > > > > > > > > > > > > -- > > > > " How exactly does one become a butterfly? You must want to fly so > badly > > > > that you are willing to give up being a caterpillar. " > > > > - Trina us > > > > > > > > > > -- > > > " How exactly does one become a butterfly? You must want to fly so badly > > > that > > > you are willing to give up being a caterpillar. " > > > - Trina us > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Hello everyone! It's very nice to meet you all! I'll admit that I've been " lurking " for a couple of months just trying to get the feel of the group. Wow is all I can say. Y'all are amazing! You're so supportive and positive all the time, and everyone is so helpful and giving of their time and advice. I hope I'll be able to add something to the mix the same way! My history is like alot of you... I've had random pain for over 23 years and was always told I had rheumatoid arthritis - UNTIL the blood tests came back negative. Then it was strains, sprains, tendonitis, fibromyalgia, etc. I was given steroids and pain killers (which helped greatly) then the pain would subside and the dr. would say " I was right " and send me on... until the next round which was every 6 - to 12 months or so and usually in a different place. This year I saw my doctor and the same thing happened. He said rheumatoid until the blood tests came back, but then he said " well, I still think it's rheumatoid so let's put you on steroids " . They helped a little, but not as much as usual. So I went back, and he looked at his records, and said " well, not rheumatoid because your tests were negative " .! I reminded him of what he said, and that the steroids helped a little, but now I was in extreme agony in my hands and wrists and unable to work anymore because of it. He then said I had deQuervain's tendonitis and would have to see a hand specialist. (sigh) I don't have insurance, and I support 2 kids and a disabled husband. So if I'm going to have to spend big money for a doctor, what do you all think about spending it on a rheumatologist instead of a hand specialist? See, usually the first symptom I have is debilitating fatigue - I fall asleep at work, on the way home, in the mornings, etc. It's awful and no matter how many hours I do sleep I feel the same way. After a week or so of that then the stiffness starts in along with moderate pain. But at the midpoint I become so stiff I can't do anything for myself for about 2-3 days. Then it starts to go away. The whole process lasts from 1 months to 3 months and then I'm left with a little residual pain and stiffness from then on, but always in different areas. This time it started as usual, but my right knee, left shoulder, left hip, both wrists and both thumbs and 1st 3 fingers were affected. When I would get on the floor on my knee, it literally felt like my skin was being ripped apart! After I would get off of it it would be red and swollen for hours. Please don't misunderstand me - I don't have Munchhausen's disease and I really don't want rheumatoid arthritis! I have 3 aunt's who lived with different states of disability from it and I've seen what it can do at it's worst - I'm terrified of it. I just don't know which direction to go. I think the hand specialist would be a waste of time because I seem to have trouble all over - although not all at once. Any advice would be really appreciated. Thank you! Barbara Quote Link to comment Share on other sites More sharing options...
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