Guest guest Report post Posted April 16, 2001 sandy have you talk ed with your dr. about this, isn't there something else he can do to help you get out of this flare, i know some of it is stress realted, but i really do worry about you every day. there has to be a way to do something there just has to me. if nothing else find a new dr. and we will all help you educated him. haven't they been able to find the right combination of meds. for you or what. please, keep fighting, i know you can do it. hang in there, ok. remember we love you very much. this is such a scarey thing. how bad is your throat, do you have a trach, or bi pap, remember love ya and you and yours and in my prayers, dawn Sandy Catalusci wrote: Lu, Wish you could come too. I'd love to see you. is doing okay. She finished the radiation on Friday. The doctors have to get together before they see her. She also has to have another MRI. Haven't been on the computer much lately. I'm in a real bad flare. You would think with all the meds. I'm on something would help. My nose is so bad and my throat is flaring again. My husband, who usually does not say anything to me about how I look, admitted to me that my nose looks pretty bad. I've been flaring daily for 2 1/2 years now and I'm getting worn out. Just wish something would work. Okay, I'm done complaining now. How have you been feeling? Hope you are having some flare free days. Love Ya, Sandy Hi Sandy, My Dad will be coming back to Cleveland Clinic this week for a checkup for a new kind of pacemaker. I wish I was able to come also. I could look you up. He only plans to be there overnight this time. So that wouldn't give me enough time to do other things. How is doing now? I'm praying she will recover and be just fine. Did they ever talk about doing the helmet radiation with her? How is Sandy feeling? Are your ears still hurting? You would think with all of the medication your doctors have you on, something would stop the pain. Don't they understand you hurt? I wish all doctors could understand this illness better, so we could get the kind of help we all need. Anyway, I just wanted to touch base with you. Please let me know how things are and how you are doing. Take care, Love you Lu DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2001 sandy have you talk ed with your dr. about this, isn't there something else he can do to help you get out of this flare, i know some of it is stress realted, but i really do worry about you every day. there has to be a way to do something there just has to me. if nothing else find a new dr. and we will all help you educated him. haven't they been able to find the right combination of meds. for you or what. please, keep fighting, i know you can do it. hang in there, ok. remember we love you very much. this is such a scarey thing. how bad is your throat, do you have a trach, or bi pap, remember love ya and you and yours and in my prayers, dawn Sandy Catalusci wrote: Lu, Wish you could come too. I'd love to see you. is doing okay. She finished the radiation on Friday. The doctors have to get together before they see her. She also has to have another MRI. Haven't been on the computer much lately. I'm in a real bad flare. You would think with all the meds. I'm on something would help. My nose is so bad and my throat is flaring again. My husband, who usually does not say anything to me about how I look, admitted to me that my nose looks pretty bad. I've been flaring daily for 2 1/2 years now and I'm getting worn out. Just wish something would work. Okay, I'm done complaining now. How have you been feeling? Hope you are having some flare free days. Love Ya, Sandy Hi Sandy, My Dad will be coming back to Cleveland Clinic this week for a checkup for a new kind of pacemaker. I wish I was able to come also. I could look you up. He only plans to be there overnight this time. So that wouldn't give me enough time to do other things. How is doing now? I'm praying she will recover and be just fine. Did they ever talk about doing the helmet radiation with her? How is Sandy feeling? Are your ears still hurting? You would think with all of the medication your doctors have you on, something would stop the pain. Don't they understand you hurt? I wish all doctors could understand this illness better, so we could get the kind of help we all need. Anyway, I just wanted to touch base with you. Please let me know how things are and how you are doing. Take care, Love you Lu DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 19, 2001 Sandy Please keep us all posted on what Valarie finds out from the MRI and the memory test. I am still sending good thoughts and prayers your way. I guess I am going to have to concentrate a little harder with you. You are just not listening about the no more flaring allowed!) Hope the med starts kicking in soon. You have sure had your share of it and more! Know that you are in my thoughts often! Lots of Love Glenda --- Sandy Catalusci biglou5685@...> wrote: > , > My family is doing okay. I'm still flaring.I hope > when the Doc gets me up to > 200mg of Cyclosporine a day I see some improvement. > is scheduled for an MRI. She had to take a > memory test on tuesday > but she doe not think she did well. She has to pass > it inorder to go back to > work. > > Hugs, > Sandy __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 19, 2001 , They will not meet with until they have the MRI results and her team of Doctors get together. I will let you know as soon as I hear something. Sandy > Sandy, > When are the doctors going to talk to her about the results of the MRI? > I pray the MRI shows the tumor has shrunk to nothing. > W > >>>>>>>>>>>>>>>>>>> > is scheduled for an MRI. > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Sandy You are such a neat person! To nominate her to carry the torch! I know your whole family has inspired me to want to strive at whatever I do. I wish all families were like yours! You guys really pull together when the going gets tough! Wait till hears about this one! She will probably want to bean you but love you even more.) How are you doing today? Have the meds kicked in yet? I hope you are doing better! Lots of Love Glenda __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Glenda, will probably bean us all. LOL I'm still doing the same. Hope you have a great day. I'm off to the fabric shop today, yes, it's my favorite place to shop. LOL Take Care. Hugs, Sandy > Sandy > You are such a neat person! To nominate her to carry > the torch! I know your whole family has inspired me > to want to strive at whatever I do. I wish all > families were like yours! You guys really pull > together when the going gets tough! > > Wait till hears about this one! She will > probably want to bean you but love you even more.) > > How are you doing today? Have the meds kicked in yet? > I hope you are doing better! > Lots of Love > Glenda > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Glenda, will probably bean us all. LOL I'm still doing the same. Hope you have a great day. I'm off to the fabric shop today, yes, it's my favorite place to shop. LOL Take Care. Hugs, Sandy > Sandy > You are such a neat person! To nominate her to carry > the torch! I know your whole family has inspired me > to want to strive at whatever I do. I wish all > families were like yours! You guys really pull > together when the going gets tough! > > Wait till hears about this one! She will > probably want to bean you but love you even more.) > > How are you doing today? Have the meds kicked in yet? > I hope you are doing better! > Lots of Love > Glenda > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Glenda, will probably bean us all. LOL I'm still doing the same. Hope you have a great day. I'm off to the fabric shop today, yes, it's my favorite place to shop. LOL Take Care. Hugs, Sandy > Sandy > You are such a neat person! To nominate her to carry > the torch! I know your whole family has inspired me > to want to strive at whatever I do. I wish all > families were like yours! You guys really pull > together when the going gets tough! > > Wait till hears about this one! She will > probably want to bean you but love you even more.) > > How are you doing today? Have the meds kicked in yet? > I hope you are doing better! > Lots of Love > Glenda > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Sandy, what a wonderful thing to do for . She is sooo lucky to have a mom like you. Your family gives me so much inspiration and hope. Thanks for brightening up my day. hugs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Sandy, what a wonderful thing to do for . She is sooo lucky to have a mom like you. Your family gives me so much inspiration and hope. Thanks for brightening up my day. hugs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Sandy, what a wonderful thing to do for . She is sooo lucky to have a mom like you. Your family gives me so much inspiration and hope. Thanks for brightening up my day. hugs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Sandy, Don't buy out the store!LOL I never go out of one of those places without spending too much!LOL Have a blast! Lots of Love Glenda __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Sandy, Don't buy out the store!LOL I never go out of one of those places without spending too much!LOL Have a blast! Lots of Love Glenda __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2001 Sandy, Don't buy out the store!LOL I never go out of one of those places without spending too much!LOL Have a blast! Lots of Love Glenda __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 25, 2001 Thank you so much Sandy, I'm so glad did well on her memory test. I'm praying for her full recovery. I also pary the doctor will get your flares under control. You have had so much stress going on, no wonder you are flaring. Know your in my thoughts and prayers. Love u Lu > Lu, > You and your family are in my prayers. Take it easy now, although right now > I know that is hard. > God Bless, > Sandy > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 25, 2001 Thank you so much Sandy, I'm so glad did well on her memory test. I'm praying for her full recovery. I also pary the doctor will get your flares under control. You have had so much stress going on, no wonder you are flaring. Know your in my thoughts and prayers. Love u Lu > Lu, > You and your family are in my prayers. Take it easy now, although right now > I know that is hard. > God Bless, > Sandy > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 25, 2001 Thank you so much Sandy, I'm so glad did well on her memory test. I'm praying for her full recovery. I also pary the doctor will get your flares under control. You have had so much stress going on, no wonder you are flaring. Know your in my thoughts and prayers. Love u Lu > Lu, > You and your family are in my prayers. Take it easy now, although right now > I know that is hard. > God Bless, > Sandy > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 6, 2001 Sandy, it's so good to see you post again. Gee I've missed you. They will find something that will work. I just feel it. We have to get you better. Just remember we are here for you anytime. Love you lots Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 16, 2001 In a message dated 5/16/01 4:34:38 PM Pacific Daylight Time, biglou5685@... writes: << Thank God for Ultram, gets me through the day. >> I'll second that one Sandy....LOL Gee I worry about you girl... Please know I'm praying as hard as I can.... Get WELL and know you are in my thoughts. hugs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 16, 2001 Sandy, Have you ever thought about that thing that P did with the massive doses of Pred- IV? You've got to stop the damage somehow that the RP is doing to your body. Maybe you should discuss this with your doctor and with P too. I'm sure she could give you lots of insight of it. I worry so much about you. Please take care of yourself. I need you to make me smile. I know, I know, purely selfish reasons, but I can't help it. Please take care. W >>>>>>>>>>>>>>>>>>>>>>>> My doc thinks I'm drug resistant. The good side of that is I have no kidney or liver damage, the bad side is they have no effect on the RP. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 16, 2001 , I mentioned the Pred. Pulse to my husband a few months ago and he wants me to do it. I have not talked to my Rheumy about it yet but I am sure my husband will bring it up. I start on 200 mg. of Cyclosporine today, don't know if it will make a difference. Next I try Cytoxan if this does not work. Thank God for Ultram, gets me through the day. Sandy > Sandy, > Have you ever thought about that thing that P did with the massive > doses of Pred- IV? > You've got to stop the damage somehow that the RP is doing to your body. > Maybe you should discuss this with your doctor and with P too. I'm > sure she could give you lots of insight of it. > I worry so much about you. Please take care of yourself. I need you to make > me smile. > I know, I know, purely selfish reasons, but I can't help it. Please take > care. > W > >>>>>>>>>>>>>>>>>>>>>>>> > My doc thinks I'm drug resistant. > The good side of that is I have no kidney or liver damage, the bad side is > they have no effect on the RP. > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 16, 2001 > , > Did go to the ER.? What's with these doctors? > So are you going back on the Imuran? > > > Sandy, No, she went to a Dr. at Kaiser which is a big HMO out here. The clinic and hospital are at the same place. I will call tomorrow for the test results and keep calling until I get an answer. I will take her back if she is no better and see another dr. I don't know if I'm going back on Imuran. No one ever called back. LOL Don't you just love em!!! Okay.....get ready Sandy.... I'm sending the heat...about 20 more degrees for you.... Catch. hugs I'm not getting all my mail, so I have to go to the group site to answer some mail. What's up with Yahoo?? Anyone know?? > Quote Share this post Link to post Share on other sites
