Guest guest Report post Posted January 18, 2003 In a message dated 1/18/03 2:44:29 PM Pacific Standard Time, jlittle4@... writes: << I live 5 minutes from Old Orchard Beach and the Ocean. >> Josie....Lucky you. OOB is my favorite. We use to rent a condo there every summer until we bought a trailer in NH. We no longer own the trailer. I haven't been to OOB in a while. My hubby loves the ocean. We have been spending our vacations doing different Island by cruising. I was always lucky (until this year) that the sun didn't bother my skin, although it always did activate my lungs. Just this summer have I had skin problems from the sun. It has been months and they still have spots left. I will be praying for you for your next visit. Love & Friendship, Ellen Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 18, 2003 In a message dated 1/18/03 2:44:29 PM Pacific Standard Time, jlittle4@... writes: << I live 5 minutes from Old Orchard Beach and the Ocean. >> Josie....Lucky you. OOB is my favorite. We use to rent a condo there every summer until we bought a trailer in NH. We no longer own the trailer. I haven't been to OOB in a while. My hubby loves the ocean. We have been spending our vacations doing different Island by cruising. I was always lucky (until this year) that the sun didn't bother my skin, although it always did activate my lungs. Just this summer have I had skin problems from the sun. It has been months and they still have spots left. I will be praying for you for your next visit. Love & Friendship, Ellen Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 18, 2003 Ellen, hi and yes I live 5 minutes from Old Orchard Beach and the Ocean. I have a new Dr that I have an appointment April 24th, I don't really care if I have Lupus, I just want to have a positive diagnosis of something before I start downing a pile of drugs that will make me worse. Well maybe someday you can come to the ocean and we could met. Take care Josie Re: Hello << The reason this doctor said that I don't have lupus is because my joints were not red or hot and they all were not swollen well it was 4;30 in the afternoon and most of my swelling is in the am and from what I understand not every lupus patience has red or hot spots, is this true? He really had me thinking >>Josie....Just because your hands are not red or swollen doesn't mean a thing. If your lupus isn't active at the time then they wouldn't be. I don't have swollen and red joints ALL THE TIME......not that I want you to have lupus, because I don't, but these Drs. think they know it all. I would have felt better if he did some blood work. Hope you make out better with your next visit. Are you going to a Dr. in Maine? In regard to where I live. I live in Central Mass. I have been to Maine many many times. I love it there. The beaches are great. Do you live near a beach?Love & Friendship,Ellen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 18, 2003 Ellen, hi and yes I live 5 minutes from Old Orchard Beach and the Ocean. I have a new Dr that I have an appointment April 24th, I don't really care if I have Lupus, I just want to have a positive diagnosis of something before I start downing a pile of drugs that will make me worse. Well maybe someday you can come to the ocean and we could met. Take care Josie Re: Hello << The reason this doctor said that I don't have lupus is because my joints were not red or hot and they all were not swollen well it was 4;30 in the afternoon and most of my swelling is in the am and from what I understand not every lupus patience has red or hot spots, is this true? He really had me thinking >>Josie....Just because your hands are not red or swollen doesn't mean a thing. If your lupus isn't active at the time then they wouldn't be. I don't have swollen and red joints ALL THE TIME......not that I want you to have lupus, because I don't, but these Drs. think they know it all. I would have felt better if he did some blood work. Hope you make out better with your next visit. Are you going to a Dr. in Maine? In regard to where I live. I live in Central Mass. I have been to Maine many many times. I love it there. The beaches are great. Do you live near a beach?Love & Friendship,Ellen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 18, 2003 Ellen, hi and yes I live 5 minutes from Old Orchard Beach and the Ocean. I have a new Dr that I have an appointment April 24th, I don't really care if I have Lupus, I just want to have a positive diagnosis of something before I start downing a pile of drugs that will make me worse. Well maybe someday you can come to the ocean and we could met. Take care Josie Re: Hello << The reason this doctor said that I don't have lupus is because my joints were not red or hot and they all were not swollen well it was 4;30 in the afternoon and most of my swelling is in the am and from what I understand not every lupus patience has red or hot spots, is this true? He really had me thinking >>Josie....Just because your hands are not red or swollen doesn't mean a thing. If your lupus isn't active at the time then they wouldn't be. I don't have swollen and red joints ALL THE TIME......not that I want you to have lupus, because I don't, but these Drs. think they know it all. I would have felt better if he did some blood work. Hope you make out better with your next visit. Are you going to a Dr. in Maine? In regard to where I live. I live in Central Mass. I have been to Maine many many times. I love it there. The beaches are great. Do you live near a beach?Love & Friendship,Ellen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 18, 2003 Well maybe on summer you both might make it back to the ocean. Josie Re: Hello << I live 5 minutes from Old Orchard Beach and the Ocean. >>Josie....Lucky you. OOB is my favorite. We use to rent a condo there every summer until we bought a trailer in NH. We no longer own the trailer. I haven't been to OOB in a while. My hubby loves the ocean. We have been spending our vacations doing different Island by cruising. I was always lucky (until this year) that the sun didn't bother my skin, although it always did activate my lungs. Just this summer have I had skin problems from the sun. It has been months and they still have spots left. I will be praying for you for your next visit.Love & Friendship,Ellen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 18, 2003 Well maybe on summer you both might make it back to the ocean. Josie Re: Hello << I live 5 minutes from Old Orchard Beach and the Ocean. >>Josie....Lucky you. OOB is my favorite. We use to rent a condo there every summer until we bought a trailer in NH. We no longer own the trailer. I haven't been to OOB in a while. My hubby loves the ocean. We have been spending our vacations doing different Island by cruising. I was always lucky (until this year) that the sun didn't bother my skin, although it always did activate my lungs. Just this summer have I had skin problems from the sun. It has been months and they still have spots left. I will be praying for you for your next visit.Love & Friendship,Ellen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 18, 2003 Well maybe on summer you both might make it back to the ocean. Josie Re: Hello << I live 5 minutes from Old Orchard Beach and the Ocean. >>Josie....Lucky you. OOB is my favorite. We use to rent a condo there every summer until we bought a trailer in NH. We no longer own the trailer. I haven't been to OOB in a while. My hubby loves the ocean. We have been spending our vacations doing different Island by cruising. I was always lucky (until this year) that the sun didn't bother my skin, although it always did activate my lungs. Just this summer have I had skin problems from the sun. It has been months and they still have spots left. I will be praying for you for your next visit.Love & Friendship,Ellen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 23, 2003 Hi Connie welcome. I too am new here so it's nice to have someone else new here as well. You have been handed a handful. How long did it take for them to tell you that you had lupus? I am still waiting for the official word this has been going on for over a year now and I know even longer but things started coming to a head last year. I am so tired of feeling bad all the time and the lack of energy. I know there are times I want to just sit and cry. I too have much going wrong with me but I think you have me beat and I know that's not a good thing. Well, if anytime you need to talk give me a yell. I am 42 a Mom of two super girls and single as well. So we have more than one thing in common and I know raising kids when your ill is no fun. Talk to you later and again any time you need to just talk I will be there for you. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 23, 2003 Hi Connie welcome. I too am new here so it's nice to have someone else new here as well. You have been handed a handful. How long did it take for them to tell you that you had lupus? I am still waiting for the official word this has been going on for over a year now and I know even longer but things started coming to a head last year. I am so tired of feeling bad all the time and the lack of energy. I know there are times I want to just sit and cry. I too have much going wrong with me but I think you have me beat and I know that's not a good thing. Well, if anytime you need to talk give me a yell. I am 42 a Mom of two super girls and single as well. So we have more than one thing in common and I know raising kids when your ill is no fun. Talk to you later and again any time you need to just talk I will be there for you. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 23, 2003 In a message dated 1/22/03 11:00:02 PM Pacific Standard Time, conniek_1@... writes: << Hello group, My name is Connie, >> Hi Connie and welcome to the group. I am sure you will enjoy this group of genuine caring friends. My name is Ellen and I live in freezing cold Massachusetts. I have lupus and fibro. I was dx in 1988. I was lucky to have had a period of remission, but unfortunately the fun ended. Again, welcome to the lupies. Love & Friendship, Ellen Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 23, 2003 In a message dated 1/22/03 11:00:02 PM Pacific Standard Time, conniek_1@... writes: << Hello group, My name is Connie, >> Hi Connie and welcome to the group. I am sure you will enjoy this group of genuine caring friends. My name is Ellen and I live in freezing cold Massachusetts. I have lupus and fibro. I was dx in 1988. I was lucky to have had a period of remission, but unfortunately the fun ended. Again, welcome to the lupies. Love & Friendship, Ellen Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 23, 2003 In a message dated 1/22/03 11:00:02 PM Pacific Standard Time, conniek_1@... writes: << Hello group, My name is Connie, >> Hi Connie and welcome to the group. I am sure you will enjoy this group of genuine caring friends. My name is Ellen and I live in freezing cold Massachusetts. I have lupus and fibro. I was dx in 1988. I was lucky to have had a period of remission, but unfortunately the fun ended. Again, welcome to the lupies. Love & Friendship, Ellen Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 23, 2003 Hi , Nice to meet you, I am looking forward to being in this group. My daughter and I tried to figure out how many years, I had all the symptoms of lupus before I was actually diagnosis, at least 5. I had statistics about how long it takes someone with lupus to get diagnosis and the number of physicians. I have been unable to locate the information. With me SLE, started with a few symptoms and has kept on roaring. Unfortunately, my Mom's SLE was diagnosis on her autopsy, her physician thought she had it for over 7 years before she died. Mom taught me a lesson in living with SLE in a major way. She did not listen to her body, follow her doctors orders, instead she kept it to herself and literally worked herself into an early death. Everyday I wake up determined today SLE will not control me, I will control it. As you know some day I win, someday it does. Connie Re: Hello Hi Connie welcome. I too am new here so it's nice to have someone else new here as well. You have been handed a handful. How long did it take for them to tell you that you had lupus? I am still waiting for the official word this has been going on for over a year now and I know even longer but things started coming to a head last year. I am so tired of feeling bad all the time and the lack of energy. I know there are times I want to just sit and cry. I too have much going wrong with me but I think you have me beat and I know that's not a good thing. Well, if anytime you need to talk give me a yell. I am 42 a Mom of two super girls and single as well. So we have more than one thing in common and I know raising kids when your ill is no fun. Talk to you later and again any time you need to just talk I will be there for you. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 23, 2003 Ellen, Thank you and a belated Happy Birthday, or was that anniversary -- can I blame not remember on a Lupus fog? Giggle. Re: Hello << Hello group,My name is Connie, >>Hi Connie and welcome to the group. I am sure you will enjoy this group of genuine caring friends. My name is Ellen and I live in freezing cold Massachusetts. I have lupus and fibro. I was dx in 1988. I was lucky to have had a period of remission, but unfortunately the fun ended. Again, welcome to the lupies.Love & Friendship,Ellen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 24, 2003 Hi Connie I have read it takes 3.5 years do usually get a dx on lupus. That is crazy meanwhile you just watch your own body waste away. My Mom died 3 years ago yesterday I wonder if she didn't have lupus because I see a lot that is happening to me happen to her. She had been dead 2 weeks before I found her so the coroner's didn't do an autopsy because she was so badly decomposing that they just looked at her medical records and said I was her heart. I so wish now I had ask for them to do and autopsy but to late now. Nice to meet you and I hope you had a good day. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2003 Dear Jill, this group is fantastic as you will find out soon. I also am a new member and love the hints that are available from the group. So many years we have struggled alone not knowing what was happening and even less about how to take care of it. Welcome aboard. Hugs Ardie [R.D.] Hello > HI everyone, > I just joined this what appears to be a very supportive group. I`ll > try to keep this as short (as possible!) and tell a little about > myself. I was diagnosed with sle 08/00. Was diagnosed after major > weight loss from malabsorbtion and vasculitis. I also have asthma, > allergies, sjorgrens, degenerative joint disease, neropathy, fibrosis > of lungs, sacroillitis, sciatica, bi-lateral carpal tunnel, severe > episodes of swelling and renal disfunction, barrets esophagus which I > recently had fundulopication surgery for, i`ve also had pancreatitis. > I currently take 31 meds. which is a major topic i`d like to discuss > with others. I am 41, have been married for 19 years with 2 terrific > teens. I don`t know what i`d do without all the help and support of > my family as i don`t get around well most days, i do have a walker > but that`s hard in the house.I am looking forward to " meeting " > everyone. > > Thank you for letting me become a part of your group, > Take care, > Jill > > > > > " The LUPIES Store " Come check out our store... > http://www.cafepress.com/thelupies > > " The LUPIES Web Page " > http://www.itzarion.com/lupusgroup.html > > " The LUPIES online photo albums! " > Check out what your fellow Lupies look like... > http://www.picturetrail.com/gallery/view?username=lupies > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2003 Jill, Welcome to our family. Connie Hello HI everyone,I just joined this what appears to be a very supportive group. I`ll try to keep this as short (as possible!) and tell a little about myself. I was diagnosed with sle 08/00. Was diagnosed after major weight loss from malabsorbtion and vasculitis. I also have asthma, allergies, sjorgrens, degenerative joint disease, neropathy, fibrosis of lungs, sacroillitis, sciatica, bi-lateral carpal tunnel, severe episodes of swelling and renal disfunction, barrets esophagus which I recently had fundulopication surgery for, i`ve also had pancreatitis. I currently take 31 meds. which is a major topic i`d like to discuss with others. I am 41, have been married for 19 years with 2 terrific teens. I don`t know what i`d do without all the help and support of my family as i don`t get around well most days, i do have a walker but that`s hard in the house.I am looking forward to "meeting" everyone.Thank you for letting me become a part of your group,Take care, Jill"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2003 Jill, Welcome to our family. Connie Hello HI everyone,I just joined this what appears to be a very supportive group. I`ll try to keep this as short (as possible!) and tell a little about myself. I was diagnosed with sle 08/00. Was diagnosed after major weight loss from malabsorbtion and vasculitis. I also have asthma, allergies, sjorgrens, degenerative joint disease, neropathy, fibrosis of lungs, sacroillitis, sciatica, bi-lateral carpal tunnel, severe episodes of swelling and renal disfunction, barrets esophagus which I recently had fundulopication surgery for, i`ve also had pancreatitis. I currently take 31 meds. which is a major topic i`d like to discuss with others. I am 41, have been married for 19 years with 2 terrific teens. I don`t know what i`d do without all the help and support of my family as i don`t get around well most days, i do have a walker but that`s hard in the house.I am looking forward to "meeting" everyone.Thank you for letting me become a part of your group,Take care, Jill"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2003 Ardie, Welcome to you also. Connie Hello> HI everyone,> I just joined this what appears to be a very supportive group. I`ll> try to keep this as short (as possible!) and tell a little about> myself. I was diagnosed with sle 08/00. Was diagnosed after major> weight loss from malabsorbtion and vasculitis. I also have asthma,> allergies, sjorgrens, degenerative joint disease, neropathy, fibrosis> of lungs, sacroillitis, sciatica, bi-lateral carpal tunnel, severe> episodes of swelling and renal disfunction, barrets esophagus which I> recently had fundulopication surgery for, i`ve also had pancreatitis.> I currently take 31 meds. which is a major topic i`d like to discuss> with others. I am 41, have been married for 19 years with 2 terrific> teens. I don`t know what i`d do without all the help and support of> my family as i don`t get around well most days, i do have a walker> but that`s hard in the house.I am looking forward to "meeting"> everyone.>> Thank you for letting me become a part of your group,> Take care,> Jill>>>>> "The LUPIES Store" Come check out our store...> http://www.cafepress.com/thelupies>> "The LUPIES Web Page"> http://www.itzarion.com/lupusgroup.html>> "The LUPIES online photo albums!"> Check out what your fellow Lupies look like...> http://www.picturetrail.com/gallery/view?username=lupies>> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2003 Ardie, Welcome to you also. Connie Hello> HI everyone,> I just joined this what appears to be a very supportive group. I`ll> try to keep this as short (as possible!) and tell a little about> myself. I was diagnosed with sle 08/00. Was diagnosed after major> weight loss from malabsorbtion and vasculitis. I also have asthma,> allergies, sjorgrens, degenerative joint disease, neropathy, fibrosis> of lungs, sacroillitis, sciatica, bi-lateral carpal tunnel, severe> episodes of swelling and renal disfunction, barrets esophagus which I> recently had fundulopication surgery for, i`ve also had pancreatitis.> I currently take 31 meds. which is a major topic i`d like to discuss> with others. I am 41, have been married for 19 years with 2 terrific> teens. I don`t know what i`d do without all the help and support of> my family as i don`t get around well most days, i do have a walker> but that`s hard in the house.I am looking forward to "meeting"> everyone.>> Thank you for letting me become a part of your group,> Take care,> Jill>>>>> "The LUPIES Store" Come check out our store...> http://www.cafepress.com/thelupies>> "The LUPIES Web Page"> http://www.itzarion.com/lupusgroup.html>> "The LUPIES online photo albums!"> Check out what your fellow Lupies look like...> http://www.picturetrail.com/gallery/view?username=lupies>> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2003 Hi Jill welcome aboard. I too am new and the people here are so great. It really helps to have someone to talk to. I am 42 single mother of 2 teenage girls. Life has not been a barrel of laughs lately but I have my family and that is what will get me through all this. Have a good night if possible I know. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2003 Hi Jill welcome aboard. I too am new and the people here are so great. It really helps to have someone to talk to. I am 42 single mother of 2 teenage girls. Life has not been a barrel of laughs lately but I have my family and that is what will get me through all this. Have a good night if possible I know. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 9, 2003 Dorothy, Yippee, Didn't I tell you Adderal worked wonders for my boys? I sure hope it continues to work for Tyler. It can make all the difference between a happy and self-controlled child, and a monster who drives the whole household up the wall. It takes a special kind of parent to work with an ADHD kid without meds, let me tell you, and I am not one of them! LOL Love, MM Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 9, 2003 Dorothy, Yippee, Didn't I tell you Adderal worked wonders for my boys? I sure hope it continues to work for Tyler. It can make all the difference between a happy and self-controlled child, and a monster who drives the whole household up the wall. It takes a special kind of parent to work with an ADHD kid without meds, let me tell you, and I am not one of them! LOL Love, MM Quote Share this post Link to post Share on other sites
