Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Angie At anytime can you tell me whether or not your lupus goes into remission or not. I know this sounds crazy, but I just what to know. I know you have been dealing with this for a while. I just want to know what I'm up against.Sometimes knowing what you are up against and facing it can calm one down. As far as for me, I believe that will help me. I'm not worrying about dyeing because that is a part of life. I don't want doctors making decisions for me, I want to make the decisions. That way I can still feel I'm somewhat in control. I hope this is making sense to you. I will do whatever it takes to make my life as comfortable as possible. It doesn't mean I have to like it, but having a peace of mind is worth more than gold to me. Thanks so much for answering. Love Rene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Rene You need eye drops to supplement the pred when you have an eye flare. and the flare could be from either disease. contact an opthamologist immediately Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Rene First off let me say I have made all my " end of life " decisions and they are in place. The hospital and all my docs have my " living will " and " durable power of attorney " and DNR orders. I had to make those choices because when the time comes I didn't want Jerry or to have any guilt either way over decisions. To be honest about the lupus, It is really hard most of the time to try to figure out which one is flaring. My internist and Rheumy have gotten to the point of doing all the necessary labs and treating the symptoms as they appear. To them it makes no difference if it is the Lupus or the RP. Since as you know they are treated the same anyway. They are also more concerned with the RP in my because I have trachea involvement. But I had three heart attacks at first attributed to the RP but now they are thinking it was the Lupus. I just found out I also have vasculitis which could be from either disease. I have learned in 11 years of being dx's that I can't worry about tomorrow. I can't dwell on it. I have made my final decisions and now I try to live. I don't want to miss one day of life worrying about death that is inevitable anyway no matter what the cause disease or old age. I hope this answered you if not let me know and I will try harder. Sorry if it sounds like I am preaching but Today is way too important,to waste it cause who knows if there is a tomorrow Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 In a message dated 8/18/99 3:44:35 AM Central Daylight Time, AngieCATW1@... writes: << I have learned in 11 years of being dx's that I can't worry about tomorrow. I can't dwell on it. I have made my final decisions and now I try to live. I don't want to miss one day of life worrying about death that is inevitable anyway no matter what the cause disease or old age. I hope this answered you if not let me know and I will try harder. Sorry if it sounds like I am preaching but Today is way too important,to waste it cause who knows if there is a tomorrow Angie >> well said Angie, Now Rene make a copy of this and read it everyday. Okay. But remember we are here for you if you need us! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 In a message dated 8/18/99 5:07:34 PM Pacific Daylight Time, Lu1953@... writes: << unice >> HI Eunice..... I promise not to laugh if you don't laugh first, but what is the V thing? Really? LOL Lu All right Lu, your going to make me do it after all. Nice. Vasullitis , that Angie just found out that she has. Now if you laugh at the way I spelled it, I'm going to get you girl. LOL See, now everyone is laughing. ------------ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 In a message dated 08/18/1999 8:07:23 PM Eastern Daylight Time, Lu1953@... writes: << V thing? Really? LOL >> vasculitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 In a message dated 8/18/99 10:30:12 PM Central Daylight Time, WCTET42@... writes: << All right Lu, your going to make me do it after all. Nice. Vasullitis , that Angie just found out that she has. Now if you laugh at the way I spelled it, I'm going to get you girl. LOL See, now everyone is laughing. ------------ >> >> LOL I'm not laughing at you but with you I can't spell it either. I think only those so called moderators of our sites can spell those BIG Words . LOL Just joking you guys ! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 1999 Report Share Posted August 22, 1999 Lu, I don't think there's enough professionals in this world to help us. LOL >>>>>>>>>>>>>>>>>>>>>>>> ROFLMAO , Do you think you and I need professional help ? LOL How you made it only 15 minutes late is beyond me !!!! LOL I have got to go tell hubby about your day!!!!! LOL Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Thanks Janet, I love new search engines. Lots of articles on RP here!! >>>>>>>>>>>>>>>>>>>>> From: Baaboo19@... <A HREF= " http://www.alltheweb.com/ " >FAST Search: All the Web, All the Time</A> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Today I can cry because roses have thorns, or I can celebrate that thorns have roses! http://homepages.msn.com/SupportSt/susuw/ http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 1999 Report Share Posted September 27, 1999 what a pretty site loved the graphic too. the poem was great thanks Janet Love and hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 In a message dated 10/10/99 10:41:10 PM Central Daylight Time, Baaboo19@... writes: << From: Baaboo19@... My sister sent me this and I thought it was so pretty I would share it with all of you. Janet <A HREF= " http://www.angelfire.com/ri/cap/index.accept.html " > accept</A> >> Thank you Janet that was beautiful. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 HI Glad to hear you are having a good day. Make the best of it. We all know that we can count on our fingers the good days. Here's to feeling GOOD!!!!!!! Take Care Rene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Sorry I thought you said you were having a good day. Please forgive me. Anyway I hope tomorrow is better Rene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 thanks for that ulifting message om s. teresa. the little flower, i ws taught. i really needed that today. i am not havng a good day and tis helped thanks again denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 P, I just want to repeat what everyone else has said about this! Thank you so much for sending it. Mother always had my deepest admiration!!! She was one in a million! >>>>>>>>>>>>>>> From: Idigflower@... written By Mother ~~~ People are often unreasonable, illogical, and self-centered; Forgive them anyway. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 In a message dated 10/16/99 7:16:14 PM Central Daylight Time, susuw@... writes: << and we might prevent that, >> Not nice , I did not say that, and you know it, thanks for not understaning! You know me better than that, or at least I would have hoped. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 , I really hate to see you leave us, but if you need to " heal " and we might prevent that, than please do what you think is best. I would never want to stand in your way of your healing process. I'm sorry your husband doesn't realize the help you can get and give about RP from the computer, but I do understand. Please take care of yourself and continue your remission!! Don't forget my email, phone number or my address girlfriend. You will be missed!!! Take care and God bless you!!!! >>>>>>>>>>>>>>> From: Idigflower@... To all the wonderful people on this group, I am very sorry to do this, but I am leaving the group for personal reasons. You all have been the wind beneath my wings (like the song) you all have helped me emotionally and I know I have helped some of you. I must now move on now that my meds are working and its now time for the " healing part " of our disorder to begin with me. Please remember I am still a phone call away or an e-mail away, I will personally keep in touch with some of you via e-mail and I will come back and post periodically on the Enbral therapy updates and if there is any set backs. My husband has broken down to me today with some issues and I need to be a " Wife " again and get off the computer. Please all just promise me if your meds are not working to get on the Enbrel, " It is the answer " you all know I would never lie to you or say this if I wasn't 100% sur of it, and maybe a cure. I love you all so much, you are my family! and I will miss you all. again sorry for doing this. Pritchard Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 and I have written each other privately concerning this post and hopefully gotten this straighten up/out whatever!! Seems like every post she writes here lately I have misunderstood. First the sed rate, now this one. She wants me to apologize on the grouplist about my post and I told her I would, so I apologize for again misreading her post!!!!!!! Sorry P and sorry everyone! >>>>>>>>>>>>>>>>>>>>>>> , That was uncalled for. Sorry if you took it the wrong way, you KNOW I don't want to leave I have to for a while, I have neglected my family, I never saw him cry before till today. Please don't take what I said personally PLEASE! you of all people Please post a message to group, you make it sound like its was because of the group, it is not, its just all family issues that is all! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 P., You've been so helpful in my and others search for anwsers - I just want you to know how much Brett and I appreciate it. I can understand you and your husbands needs right now and I wish you all the best. God be with you in the healing and regrouping time. Take care, B. At 07:47 PM 10/16/1999 EDT, you wrote: >From: Idigflower@... > >To all the wonderful people on this group, I am very sorry to do this, but I >am leaving the group for personal reasons. You all have been the wind beneath >my wings (like the song) you all have helped me emotionally and I know I have >helped some of you. I must now move on now that my meds are working and its >now time for the " healing part " of our disorder to begin with me. Please >remember I am still a phone call away or an e-mail away, I will personally >keep in touch with some of you via e-mail and I will come back and post >periodically on the Enbral therapy updates and if there is any set backs. My >husband has broken down to me today with some issues and I need to be a > " Wife " again and get off the computer. Please all just promise me if your >meds are not working to get on the Enbrel, " It is the answer " you all know I >would never lie to you or say this if I wasn't 100% sur of it, and maybe a >cure. I love you all so much, you are my family! and I will miss you all. >again sorry for doing this. > > Pritchard >10 Princeton Court >Hawthorn Wood's Illinois 60047 > > >>hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 so sorry to her you are leaving the internet, however i think it is also my hope that my condition can be so controlled that i could work again. when i first got on eht internet years ago here was no rp group but since i could do nothing more at the time ecpt sit and the crazy tv talk shows where making kme question my sanity, the internet seemed like a dream come true. however, i obsessed and was on day and night. i swore that this time it would be different. that is why i do not get on the weekends and only abut for an hour or two a day. i need people in my life and am very grateful that i cn al least at this time get out of the house. however there may come a time when i a again hoisebound for long period of tme. enoy your life, i will miss you. but i am gateful that you have found relief with enbrel. enjoy every minute of you rlife to the fullest. i think that is what it is supposed to be about anyway. may god bless you and your family i will keep you in my prayers. since we live so close i wa hoping htat at some point we could get together, perhaps tat will happen. it will if it is supposd to. please takecare. ]denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Stacie and Jodi, My 2 cents... I have a crooked fifth finger, and my husband and I both have 'joined' 2nd and third toes.. Inga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 How unique!! Wonder what the doctors would say about that? I could do without some of the RSS charactertics for myself such as reflux, assemetry, low muscle tone, hypoglycemic, etc., but I wouldn't mind having a less of an appetite!!!! Wouldn't hurt me a bit to have the feeling of not wanting to eat very much!!! That is one part of the syndrome I wish I had..... ha. ha. ha. Stacie Inga wrote: > > > Stacie and Jodi, > > My 2 cents... I have a crooked fifth finger, and my husband and I both have > 'joined' 2nd and third toes.. > > Inga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 In a message dated 10/18/1999 6:08:32 PM Pacific Daylight Time, Lu1953@... writes: << you will be missed.... Lu >> You already missed her. That letter was telling us she was leaving the group. You are almost as bad as I am. I stopped someones mail then told them I had done it. : ) I am glad I am in good company. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 sent it to me and asked me to forward it to the list Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 In a message dated 10/18/1999 7:56:38 PM Pacific Daylight Time, Lu1953@... writes: << I figured she would still read her mail for a little while. Some husband you get to feeling better and he makes you leave all your friends... Okay tell me to shut up now... >> I didnt check, But I think she is gone. you might be right. If so I still wont kiss tho. : ) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.