hello new here

January 17, 2003

Hi Josie I am new here but man do I know where your coming from. All I do is see new doctors run more test and I think they have taken most of my blood by now. I had a biopsy of the rash taken one came back lupus the other nothing. I have 3 doctors right now thinking this may very well be lupus because of the butterfly rash, small strokes, painful joints, swelling in my legs,tremors,possible seizures I go this month for an EEG on my brain, I have several lesions on my brain, lesions on my lungs and liver. If anyone knows weather lesions on the lungs or liver are normal for a lupus person please let me know, High platelet count, rash also on my arms and back been there for 5 months when I go out in the sun I get sick and those damn florescent lights also make the rash worse. I don't sleep well at all so I take ambien to put me down but I still wake up a lot. I am always in so much pain with my lower back, upper and my neck plus my knees suck. The joints in my fingers feel like someone took a hammer to them. I run slight temperatures for no reason. I get sores in my nose and I think yeast infections in my mouth since I now always have a cotton mouth from hell. You don't realize how much your spit does for you until you don't have it. I sure as hell don't waste it when I have it. I have tried the biotene products they did nothing, bought salvia tablets and spray still no use. I hate chewing gum but now I find myself doing it just to get some moisture in my mouth or suck on ice all day and then be up all night peeing because my bladder can't hold more than I swear a tablespoon of pee. I have big time problems with kidney stones. I mean I had 14 of them last year. I had to have my gallbladder removed right after having my first child. They thought there was only 1 in there HA there was 374 in there it also caused pancertiste Spelled wrong and was told it could have killed me. I just had a baby she was 2 weeks old and I was back in the hospital. Needless to say I became a bit depressed because I couldn't be with my baby so I checked myself out and boy that pissed a few doc's off. I went back 9 months later have I quit breast feeding to finally let them take it out. I have IBS, Been told years ago that I am allergic to the cold and break out in hives if I get to cold. My feet stay so cold all the time and now my hands are getting to be that way. They now go numb or prickly feeling when they are cold or plan just hurt. I know there's more but this is long anyway the blood test for the ANA has came back normal both times. I know that it may never come back positive not all lupus so it in there ANA I would just like them to finally come out and say yes this is lupus so I can deal with it and they can start to treat it. I realize doctors don't want to tell you that you now have something that could kill you. But this is bull I have been passed around like a ball for over a year now. Just starting seeing a new doc they sent me to. She is an internal medicine doc she was very nice but she now wants blood test done. Last week had to do the 24 hr pee collection they said looked ok. She did say a few of the blood test came back abnormal but she didn't think it was anything to be worried about. I'm thinking how do you know. I do know that no 2 lupus people will not have the same problems. I got pulled over last summer when I was driving all of a sudden I got double vision and couldn't tell where the line was. I was at the street I needed to turn down plus would have been close to the kids Grandma. So then just my luck a cop was behind me, pulled me over and told my I went over the line and that I could have caused an accident. I told him I had just has 3 small strokes a month or 2 ago and that my vision changed that fast. So he gives me a look like yeah right you don't look old enough to be having strokes. I was 41 my youngest was in the car. So this cop writes me a ticket never once ask if I need medical attention. They drive my daughter to Grandma's house and bring her and my oldest back so she could drive my car home since he didn't want me to be driving. I was fine with that. I would not drive if my vision had started out that way. My youngest was so upset and crying thinking it was her fault because she ask me to take her over to Grandma's. I held her and said this would have happened either way and it's not your fault. The kid still thinks I'm dying so I try to not let her see how bad I am really doing. I still work because I am a single Mom with one in college and the other in the 10 grade. Great kids I am lucky there. The oldest helps a lot when it comes to picking up her sister for me or running an errand when I am feeling to bad to go out myself. I still work 45 to 50 hrs a week and it is killing me. I am so tired all the time at times I just want to sit and cry. My oldest was told when she was 12 that she has FM she is 19 now. I don't know if they are right because I know a lot wasn't known about KM back then. I know if this is lupus my girls stand a 1 in 40 chance of them having it. God I so hope they never have to go through this hell. I had 2 more small strokes 2 weeks ago and last night I almost choked to death on my pill. Lucky for me my partner was there and she did the hymlic spelled wrong on me and out popped the pill. If any one could give me more insight on this disease please email me, also if you were the doc would you have said by now with all that is going on plus the famous lupus rash that I have lupus? I really would like to know what you all think because I really think this is lupus with all the research I have done. I am so sorry this email is a mile long. I have so much I still need to learn and I am full of questions. Thanks for listening to me again sorry so ling.

January 17, 2003

Hi Josie I am new here but man do I know where your coming from. All I do is see new doctors run more test and I think they have taken most of my blood by now. I had a biopsy of the rash taken one came back lupus the other nothing. I have 3 doctors right now thinking this may very well be lupus because of the butterfly rash, small strokes, painful joints, swelling in my legs,tremors,possible seizures I go this month for an EEG on my brain, I have several lesions on my brain, lesions on my lungs and liver. If anyone knows weather lesions on the lungs or liver are normal for a lupus person please let me know, High platelet count, rash also on my arms and back been there for 5 months when I go out in the sun I get sick and those damn florescent lights also make the rash worse. I don't sleep well at all so I take ambien to put me down but I still wake up a lot. I am always in so much pain with my lower back, upper and my neck plus my knees suck. The joints in my fingers feel like someone took a hammer to them. I run slight temperatures for no reason. I get sores in my nose and I think yeast infections in my mouth since I now always have a cotton mouth from hell. You don't realize how much your spit does for you until you don't have it. I sure as hell don't waste it when I have it. I have tried the biotene products they did nothing, bought salvia tablets and spray still no use. I hate chewing gum but now I find myself doing it just to get some moisture in my mouth or suck on ice all day and then be up all night peeing because my bladder can't hold more than I swear a tablespoon of pee. I have big time problems with kidney stones. I mean I had 14 of them last year. I had to have my gallbladder removed right after having my first child. They thought there was only 1 in there HA there was 374 in there it also caused pancertiste Spelled wrong and was told it could have killed me. I just had a baby she was 2 weeks old and I was back in the hospital. Needless to say I became a bit depressed because I couldn't be with my baby so I checked myself out and boy that pissed a few doc's off. I went back 9 months later have I quit breast feeding to finally let them take it out. I have IBS, Been told years ago that I am allergic to the cold and break out in hives if I get to cold. My feet stay so cold all the time and now my hands are getting to be that way. They now go numb or prickly feeling when they are cold or plan just hurt. I know there's more but this is long anyway the blood test for the ANA has came back normal both times. I know that it may never come back positive not all lupus so it in there ANA I would just like them to finally come out and say yes this is lupus so I can deal with it and they can start to treat it. I realize doctors don't want to tell you that you now have something that could kill you. But this is bull I have been passed around like a ball for over a year now. Just starting seeing a new doc they sent me to. She is an internal medicine doc she was very nice but she now wants blood test done. Last week had to do the 24 hr pee collection they said looked ok. She did say a few of the blood test came back abnormal but she didn't think it was anything to be worried about. I'm thinking how do you know. I do know that no 2 lupus people will not have the same problems. I got pulled over last summer when I was driving all of a sudden I got double vision and couldn't tell where the line was. I was at the street I needed to turn down plus would have been close to the kids Grandma. So then just my luck a cop was behind me, pulled me over and told my I went over the line and that I could have caused an accident. I told him I had just has 3 small strokes a month or 2 ago and that my vision changed that fast. So he gives me a look like yeah right you don't look old enough to be having strokes. I was 41 my youngest was in the car. So this cop writes me a ticket never once ask if I need medical attention. They drive my daughter to Grandma's house and bring her and my oldest back so she could drive my car home since he didn't want me to be driving. I was fine with that. I would not drive if my vision had started out that way. My youngest was so upset and crying thinking it was her fault because she ask me to take her over to Grandma's. I held her and said this would have happened either way and it's not your fault. The kid still thinks I'm dying so I try to not let her see how bad I am really doing. I still work because I am a single Mom with one in college and the other in the 10 grade. Great kids I am lucky there. The oldest helps a lot when it comes to picking up her sister for me or running an errand when I am feeling to bad to go out myself. I still work 45 to 50 hrs a week and it is killing me. I am so tired all the time at times I just want to sit and cry. My oldest was told when she was 12 that she has FM she is 19 now. I don't know if they are right because I know a lot wasn't known about KM back then. I know if this is lupus my girls stand a 1 in 40 chance of them having it. God I so hope they never have to go through this hell. I had 2 more small strokes 2 weeks ago and last night I almost choked to death on my pill. Lucky for me my partner was there and she did the hymlic spelled wrong on me and out popped the pill. If any one could give me more insight on this disease please email me, also if you were the doc would you have said by now with all that is going on plus the famous lupus rash that I have lupus? I really would like to know what you all think because I really think this is lupus with all the research I have done. I am so sorry this email is a mile long. I have so much I still need to learn and I am full of questions. Thanks for listening to me again sorry so ling.

January 17, 2003

Hi , boy and I thought I felt bad, I am so sorry to hear all that you have to go through. Like everyone here keeps telling me don't give up and keep looking for the right doctor. I know that is were I am at right now. It is good you have your girls. I have a 14 and 12 year both girls and they help me out alot as well. Well we will have to be one anothers cheering squad. Maybe together we will find the answers we are looking for. Keep your chin up. by the way were do you live? I live in Maine. Josie

Re: Hello New here

Hi Josie I am new here but man do I know where your coming from. All I do is see new doctors run more test and I think they have taken most of my blood by now. I had a biopsy of the rash taken one came back lupus the other nothing. I have 3 doctors right now thinking this may very well be lupus because of the butterfly rash, small strokes, painful joints, swelling in my legs,tremors,possible seizures I go this month for an EEG on my brain, I have several lesions on my brain, lesions on my lungs and liver. If anyone knows weather lesions on the lungs or liver are normal for a lupus person please let me know, High platelet count, rash also on my arms and back been there for 5 months when I go out in the sun I get sick and those damn florescent lights also make the rash worse. I don't sleep well at all so I take ambien to put me down but I still wake up a lot. I am always in so much pain! with my lower back, upper and my neck plus my knees suck. The joints in my fingers feel like someone took a hammer to them. I run slight temperatures for no reason. I get sores in my nose and I think yeast infections in my mouth since I now always have a cotton mouth from hell. You don't realize how much your spit does for you until you don't have it. I sure as hell don't waste it when I have it. I have tried the biotene products they did nothing, bought salvia tablets and spray still no use. I hate chewing gum but now I find myself doing it just to get some moisture in my mouth or suck on ice all day and then be up all night peeing because my bladder can't hold more than I swear a tablespoon of pee. I have big time problems with kidney stones. I mean I had 14 of them last year. I had to have my gallbladder removed right after having my first child. They thought there was only 1 in there HA there was 374 in there it also caused pancertiste Spelled wrong and was told it coul! d have killed me. I just had a baby she was 2 weeks old and I was back in the hospital. Needless to say I became a bit depressed because I couldn't be with my baby so I checked myself out and boy that pissed a few doc's off. I went back 9 months later have I quit breast feeding to finally let them take it out. I have IBS, Been told years ago that I am allergic to the cold and break out in hives if I get to cold. My feet stay so cold all the time and now my hands are getting to be that way. They now go numb or prickly feeling when they are cold or plan just hurt. I know there's more but this is long anyway the blood test for the ANA has came back normal both times. I know that it may never come back positive not all lupus so it in there ANA I would just like them to finally come out and say yes this is lupus so I can deal with it and they can start to treat it. I realize doctors don't want to tell you that you now have something that could kill you. But this is bull I have be! en passed around like a ball for over a year now. Just starting seeing a new doc they sent me to. She is an internal medicine doc she was very nice but she now wants blood test done. Last week had to do the 24 hr pee collection they said looked ok. She did say a few of the blood test came back abnormal but she didn't think it was anything to be worried about. I'm thinking how do you know. I do know that no 2 lupus people will not have the same problems. I got pulled over last summer when I was driving all of a sudden I got double vision and couldn't tell where the line was. I was at the street I needed to turn down plus would have been close to the kids Grandma. So then just my luck a cop was behind me, pulled me over and told my I went over the line and that I could have caused an accident. I told him I had just has 3 small strokes a month or 2 ago and that my vision changed that fast. So he gives me a look like yeah right you don't look old enough to be having strokes. I w! as 41 my youngest was in the car. So this cop writes me a ticket never once ask if I need medical attention. They drive my daughter to Grandma's house and bring her and my oldest back so she could drive my car home since he didn't want me to be driving. I was fine with that. I would not drive if my vision had started out that way. My youngest was so upset and crying thinking it was her fault because she ask me to take her over to Grandma's. I held her and said this would have happened either way and it's not your fault. The kid still thinks I'm dying so I try to not let her see how bad I am really doing. I still work because I am a single Mom with one in college and the other in the 10 grade. Great kids I am lucky there. The oldest helps a lot when it comes to picking up her sister for me or running an errand when I am feeling to bad to go out myself. I still work 45 to 50 hrs a week and it is killing me. I am so tired all the time at times I just want to sit and cry.! My oldest was told when she was 12 that she has FM she is 19 now. I don't know if they are right because I know a lot wasn't known about KM back then. I know if this is lupus my girls stand a 1 in 40 chance of them having it. God I so hope they never have to go through this hell. I had 2 more small strokes 2 weeks ago and last night I almost choked to death on my pill. Lucky for me my partner was there and she did the hymlic spelled wrong on me and out popped the pill. If any one could give me more insight on this disease please email me, also if you were the doc would you have said by now with all that is going on plus the famous lupus rash that I have lupus? I really would like to know what you all think because I really think this is lupus with all the research I have done. I am so sorry this email is a mile long. I have so much I still need to learn and I am full of questions. Thanks for listening to me again sorry so ling. "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

January 17, 2003

Hi , boy and I thought I felt bad, I am so sorry to hear all that you have to go through. Like everyone here keeps telling me don't give up and keep looking for the right doctor. I know that is were I am at right now. It is good you have your girls. I have a 14 and 12 year both girls and they help me out alot as well. Well we will have to be one anothers cheering squad. Maybe together we will find the answers we are looking for. Keep your chin up. by the way were do you live? I live in Maine. Josie

Re: Hello New here

Hi Josie I am new here but man do I know where your coming from. All I do is see new doctors run more test and I think they have taken most of my blood by now. I had a biopsy of the rash taken one came back lupus the other nothing. I have 3 doctors right now thinking this may very well be lupus because of the butterfly rash, small strokes, painful joints, swelling in my legs,tremors,possible seizures I go this month for an EEG on my brain, I have several lesions on my brain, lesions on my lungs and liver. If anyone knows weather lesions on the lungs or liver are normal for a lupus person please let me know, High platelet count, rash also on my arms and back been there for 5 months when I go out in the sun I get sick and those damn florescent lights also make the rash worse. I don't sleep well at all so I take ambien to put me down but I still wake up a lot. I am always in so much pain! with my lower back, upper and my neck plus my knees suck. The joints in my fingers feel like someone took a hammer to them. I run slight temperatures for no reason. I get sores in my nose and I think yeast infections in my mouth since I now always have a cotton mouth from hell. You don't realize how much your spit does for you until you don't have it. I sure as hell don't waste it when I have it. I have tried the biotene products they did nothing, bought salvia tablets and spray still no use. I hate chewing gum but now I find myself doing it just to get some moisture in my mouth or suck on ice all day and then be up all night peeing because my bladder can't hold more than I swear a tablespoon of pee. I have big time problems with kidney stones. I mean I had 14 of them last year. I had to have my gallbladder removed right after having my first child. They thought there was only 1 in there HA there was 374 in there it also caused pancertiste Spelled wrong and was told it coul! d have killed me. I just had a baby she was 2 weeks old and I was back in the hospital. Needless to say I became a bit depressed because I couldn't be with my baby so I checked myself out and boy that pissed a few doc's off. I went back 9 months later have I quit breast feeding to finally let them take it out. I have IBS, Been told years ago that I am allergic to the cold and break out in hives if I get to cold. My feet stay so cold all the time and now my hands are getting to be that way. They now go numb or prickly feeling when they are cold or plan just hurt. I know there's more but this is long anyway the blood test for the ANA has came back normal both times. I know that it may never come back positive not all lupus so it in there ANA I would just like them to finally come out and say yes this is lupus so I can deal with it and they can start to treat it. I realize doctors don't want to tell you that you now have something that could kill you. But this is bull I have be! en passed around like a ball for over a year now. Just starting seeing a new doc they sent me to. She is an internal medicine doc she was very nice but she now wants blood test done. Last week had to do the 24 hr pee collection they said looked ok. She did say a few of the blood test came back abnormal but she didn't think it was anything to be worried about. I'm thinking how do you know. I do know that no 2 lupus people will not have the same problems. I got pulled over last summer when I was driving all of a sudden I got double vision and couldn't tell where the line was. I was at the street I needed to turn down plus would have been close to the kids Grandma. So then just my luck a cop was behind me, pulled me over and told my I went over the line and that I could have caused an accident. I told him I had just has 3 small strokes a month or 2 ago and that my vision changed that fast. So he gives me a look like yeah right you don't look old enough to be having strokes. I w! as 41 my youngest was in the car. So this cop writes me a ticket never once ask if I need medical attention. They drive my daughter to Grandma's house and bring her and my oldest back so she could drive my car home since he didn't want me to be driving. I was fine with that. I would not drive if my vision had started out that way. My youngest was so upset and crying thinking it was her fault because she ask me to take her over to Grandma's. I held her and said this would have happened either way and it's not your fault. The kid still thinks I'm dying so I try to not let her see how bad I am really doing. I still work because I am a single Mom with one in college and the other in the 10 grade. Great kids I am lucky there. The oldest helps a lot when it comes to picking up her sister for me or running an errand when I am feeling to bad to go out myself. I still work 45 to 50 hrs a week and it is killing me. I am so tired all the time at times I just want to sit and cry.! My oldest was told when she was 12 that she has FM she is 19 now. I don't know if they are right because I know a lot wasn't known about KM back then. I know if this is lupus my girls stand a 1 in 40 chance of them having it. God I so hope they never have to go through this hell. I had 2 more small strokes 2 weeks ago and last night I almost choked to death on my pill. Lucky for me my partner was there and she did the hymlic spelled wrong on me and out popped the pill. If any one could give me more insight on this disease please email me, also if you were the doc would you have said by now with all that is going on plus the famous lupus rash that I have lupus? I really would like to know what you all think because I really think this is lupus with all the research I have done. I am so sorry this email is a mile long. I have so much I still need to learn and I am full of questions. Thanks for listening to me again sorry so ling. "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

January 18, 2003

Hi Josie thanks for the sweet e-mail. It really does help to have someone to talk who is going through the same thing. People say they understand but unless they walk in our shoes they can't feel the total fear we feel everyday. I live in Ohio and it's freaking cold here and my body doesn't like the cold. It's great to have a support group for us to talk about what we are going through or just to vent. Like I said I'm new to the group I think this is my second week. The people seem so very nice. Well, you hang in there as well and if ever you just need to talk you can e-mail me any time.

January 18, 2003

Hi Josie thanks for the sweet e-mail. It really does help to have someone to talk who is going through the same thing. People say they understand but unless they walk in our shoes they can't feel the total fear we feel everyday. I live in Ohio and it's freaking cold here and my body doesn't like the cold. It's great to have a support group for us to talk about what we are going through or just to vent. Like I said I'm new to the group I think this is my second week. The people seem so very nice. Well, you hang in there as well and if ever you just need to talk you can e-mail me any time.

January 18, 2003

Hi Josie thanks for the sweet e-mail. It really does help to have someone to talk who is going through the same thing. People say they understand but unless they walk in our shoes they can't feel the total fear we feel everyday. I live in Ohio and it's freaking cold here and my body doesn't like the cold. It's great to have a support group for us to talk about what we are going through or just to vent. Like I said I'm new to the group I think this is my second week. The people seem so very nice. Well, you hang in there as well and if ever you just need to talk you can e-mail me any time.

March 31, 2011

Hi everyone, Im stephanie, from new jersey...

as many of us, i felt like i was going thru depression after going thru a

divorce and soap opera drama from new husbands ex wife. I would also suffer

many panic attacks, feeling like my heart was beating out of my chest, not being

able to catch my breath and nothing that i could think of triggered it. for that

the dr gave me lorazepam 0.5.... and he started me on welbutrin. i felt the

welbutrin did nothing and only took the loraz when needed and didnt mix with

ambien like the dr said. he stopped the welb and started me on zoloft. 50mg....

I stayed on that for about 6 months, i complained at the next check up that

ambien or no ambien, i was having a hard time sleeping, so he uped the zoloft to

100mg, said to take it at night and Ill be able to sleep.... ok, hes the dr,....

well 3 months later (I guess about 2 months ago) im feeling like zoloft is doing

nothing for me, and i dont want to have sex with my husband. i was going to make

an appointment to complain again, but figured he would just put me on something

else, so i started researching weaning off(the kicker was the INSANE weight I

gained, FAST!!), by gradually lowering the dosage. Ive started looking into

supplements, changing my diet and of course working out. Ive started

journalling just to try to be accountable for what I do and what i put in my

body and just to kinda keep track of how i feel. im feeling a little agitated,

in about 5 weeks ive gone from 100mg to 12.5, which seems fast, but no brain

zaps and like i said only lite agitation. Im actually a fairly happy person and

feel that I probably had no business being on this medication to begin with.....

im looking forward to learning alot here

steph

April 2, 2011

>

> Hi everyone, Im stephanie, from new jersey...

>

> as many of us, i felt like i was going thru depression after going thru a