Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 Hello! I hope this doesn't become a " repost " , but my last one didn't appear to show up. I am new to the diagnosis, a " flare up " and this message board. I can't believe this exists. Thank you all for being here for me to find so quickly. I'm anxious to see more of your stories and hear your encouraging words, while trying to offer my own. I saw a post that talked about kicking RP! That's so different than the scary websites I have been to for the last three days. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 Hello! I hope this doesn't become a " repost " , but my last one didn't appear to show up. I am new to the diagnosis, a " flare up " and this message board. I can't believe this exists. Thank you all for being here for me to find so quickly. I'm anxious to see more of your stories and hear your encouraging words, while trying to offer my own. I saw a post that talked about kicking RP! That's so different than the scary websites I have been to for the last three days. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 In a message dated 12/14/01 1:25:08 PM Pacific Standard Time, mmjw3@... writes: << I saw a post that talked about kicking RP! That's so different than the scary websites I have been to for the last three days. Thanks! >> , we were gonna kick RP right out the door last New Years EVE. LOL Seems like we jinxed ourselves... But with the help of the Foundation , we will make headway. The goal of the RP Foundation is to educate and promote awareness to the public and medical professions. We want to get the word out so that people can be diagnosed quickly and treated. RP is controlable with the proper treatment. We have Dr. Jane Buckner from the Virginia Mason Research Center in WA working with us. We have a newletter, and are working on fundraising. We are also in the process of getting brochures done so we can put them in Drs offices etc. All we ask is a yearly donation of $15. (but we will always except more) LOL Checks or money orders can be made out to ' RP Foundation " and mailed to RP Foundation c/o Colloran 775 Bounty Place Manteca, CA 95337 I'm so glad you found us. Have a nice weekend. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 In a message dated 12/14/01 1:25:08 PM Pacific Standard Time, mmjw3@... writes: << I saw a post that talked about kicking RP! That's so different than the scary websites I have been to for the last three days. Thanks! >> , we were gonna kick RP right out the door last New Years EVE. LOL Seems like we jinxed ourselves... But with the help of the Foundation , we will make headway. The goal of the RP Foundation is to educate and promote awareness to the public and medical professions. We want to get the word out so that people can be diagnosed quickly and treated. RP is controlable with the proper treatment. We have Dr. Jane Buckner from the Virginia Mason Research Center in WA working with us. We have a newletter, and are working on fundraising. We are also in the process of getting brochures done so we can put them in Drs offices etc. All we ask is a yearly donation of $15. (but we will always except more) LOL Checks or money orders can be made out to ' RP Foundation " and mailed to RP Foundation c/o Colloran 775 Bounty Place Manteca, CA 95337 I'm so glad you found us. Have a nice weekend. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 --- mmjw3 wrote: > Hello! > I can't tell you how happy I am to find this list. > The web sites are > so scary! > I am going to be 38 in two weeks and have just had > my first intense > flare up and diagnosis of RP. I am anxious to hear > about others' > experiences, as I don't see a rheumatologist until > Christmas Eve > day. I have heard enough about the dangers and > prognosis, but I want > to hear how people are LIVING with this rare > condition. > Please offer any information, experiences, etc... I > don't know if > it's proper to post my email, so I will wait until i > hear about that, > but if it is, people can also email me directly. > > > Hi " Newbie " Just keep posting and reading and you will learn so much from this group. We post a bit of everything..not only about our illness, but just about life in general. I just turned 57 last month and have only had an official diagnosis since May of this year. I think I had RP for some time prior to that dx. We seem to run the gamut in the group, from those who have major problems, to those who fare very well. Seeing a rheumatologist is very important. What kind of doctor diagnosed you? Does he/she have you on any medication? Where are you flaring? I take prednisone....have been on it for almost two years continuously. I also take azathioprine, arava, and enbrel injections. Some people only take an immunosuppressive and prednisone when they flare. This disease really varies from person to person, and so each person responds differently to medications. I think most of us also have other autoimmune disorders. As sort of a " newbie " myself, I am still learning and absorbing. I print some things to share with my rheumy and my PCP. The PCP has never even seen another RP patient! I live with this disease by taking my medications as directed, resting when I need to (and when I can), and staying in really close touch with my rheumy. Some days are good and some are bad. You just learn to adjust! Up until recently I was taking care of my baby granddaughter full time. Very hard, but I was able to do it. I also help raise our almost 9 year old grandson, and homeschool our highschool age son. Hang in there and posting anything to the group is great! Or, you can post privately! Take care, and please let us know how you are doing and how your appointment goes on Christmas Eve. Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 --- mmjw3 wrote: > Hello! > I can't tell you how happy I am to find this list. > The web sites are > so scary! > I am going to be 38 in two weeks and have just had > my first intense > flare up and diagnosis of RP. I am anxious to hear > about others' > experiences, as I don't see a rheumatologist until > Christmas Eve > day. I have heard enough about the dangers and > prognosis, but I want > to hear how people are LIVING with this rare > condition. > Please offer any information, experiences, etc... I > don't know if > it's proper to post my email, so I will wait until i > hear about that, > but if it is, people can also email me directly. > > > Hi " Newbie " Just keep posting and reading and you will learn so much from this group. We post a bit of everything..not only about our illness, but just about life in general. I just turned 57 last month and have only had an official diagnosis since May of this year. I think I had RP for some time prior to that dx. We seem to run the gamut in the group, from those who have major problems, to those who fare very well. Seeing a rheumatologist is very important. What kind of doctor diagnosed you? Does he/she have you on any medication? Where are you flaring? I take prednisone....have been on it for almost two years continuously. I also take azathioprine, arava, and enbrel injections. Some people only take an immunosuppressive and prednisone when they flare. This disease really varies from person to person, and so each person responds differently to medications. I think most of us also have other autoimmune disorders. As sort of a " newbie " myself, I am still learning and absorbing. I print some things to share with my rheumy and my PCP. The PCP has never even seen another RP patient! I live with this disease by taking my medications as directed, resting when I need to (and when I can), and staying in really close touch with my rheumy. Some days are good and some are bad. You just learn to adjust! Up until recently I was taking care of my baby granddaughter full time. Very hard, but I was able to do it. I also help raise our almost 9 year old grandson, and homeschool our highschool age son. Hang in there and posting anything to the group is great! Or, you can post privately! Take care, and please let us know how you are doing and how your appointment goes on Christmas Eve. Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 , Welcome to this group.I'm not "PRer" , I'm just a mother of 3 RPers . Coralire 14 years old, 11 and Nicolas 19 soon.Unfortunately Valérie 23 years old is not RPer LOL. 3 on 4 god result isn'it ? lol Her we can hve o a lot of support and people who understand all your disease. It' a great site. Your nme seem french. I'm french. Amitiés Marie-Pia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 , Welcome to this group.I'm not "PRer" , I'm just a mother of 3 RPers . Coralire 14 years old, 11 and Nicolas 19 soon.Unfortunately Valérie 23 years old is not RPer LOL. 3 on 4 god result isn'it ? lol Her we can hve o a lot of support and people who understand all your disease. It' a great site. Your nme seem french. I'm french. Amitiés Marie-Pia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 Hello and thank you for your welcoming. My name is french, but I am not. Thank you for your warm welcome and an introduction to you and your family. Take care! > , > > Welcome to this group.I'm not " PRer " , I'm just a mother of 3 RPers . > Coralire 14 years old, 11 and Nicolas 19 soon.Unfortunately Valérie > 23 years old is not RPer LOL. > 3 on 4 god result isn'it ? lol > Her we can hve o a lot of support and people who understand all your disease. > It' a great site. > Your nme seem french. > I'm french. > > Amitiés > > Marie-Pia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 Hello and thank you for your welcoming. My name is french, but I am not. Thank you for your warm welcome and an introduction to you and your family. Take care! > , > > Welcome to this group.I'm not " PRer " , I'm just a mother of 3 RPers . > Coralire 14 years old, 11 and Nicolas 19 soon.Unfortunately Valérie > 23 years old is not RPer LOL. > 3 on 4 god result isn'it ? lol > Her we can hve o a lot of support and people who understand all your disease. > It' a great site. > Your nme seem french. > I'm french. > > Amitiés > > Marie-Pia Quote Link to comment Share on other sites More sharing options...
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