Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hello Laci, welcome to the group. I hope that you find all that you are looking for here. There is a lot of information and many people willing to share their experiences. We also allow whining, teasing and we share family stories. xlglimmerlx wrote: Hiya, My name is Laci and I just joined your group. I am 23 and was diagnosed with lupus when I was 14. I have had many problems with my health since then. Rhuematoid arthritis, fibromialsia, tsuto tumor cerebri, blood clots, seizures, skin rashes, and kidney failure. I was fortunate enough to recieve a kidney transplant in 2002, but in Dec of 03 had to have it removed because I got wutz called Bk Virus in it. I am currently working on gettin back on the kidney transplant list. My lupus is in remission right now and has been for a little over 3 years. It is nice to find a group of people to talk to share experiences with and get a better understanding of lupus to help take better care of myself. I hope to get to know you all :)Your New Friend,Laci"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/lupies __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hello Laci, welcome to the group. I hope that you find all that you are looking for here. There is a lot of information and many people willing to share their experiences. We also allow whining, teasing and we share family stories. xlglimmerlx wrote: Hiya, My name is Laci and I just joined your group. I am 23 and was diagnosed with lupus when I was 14. I have had many problems with my health since then. Rhuematoid arthritis, fibromialsia, tsuto tumor cerebri, blood clots, seizures, skin rashes, and kidney failure. I was fortunate enough to recieve a kidney transplant in 2002, but in Dec of 03 had to have it removed because I got wutz called Bk Virus in it. I am currently working on gettin back on the kidney transplant list. My lupus is in remission right now and has been for a little over 3 years. It is nice to find a group of people to talk to share experiences with and get a better understanding of lupus to help take better care of myself. I hope to get to know you all :)Your New Friend,Laci"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/lupies __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hello Laci, welcome to the group. I hope that you find all that you are looking for here. There is a lot of information and many people willing to share their experiences. We also allow whining, teasing and we share family stories. xlglimmerlx wrote: Hiya, My name is Laci and I just joined your group. I am 23 and was diagnosed with lupus when I was 14. I have had many problems with my health since then. Rhuematoid arthritis, fibromialsia, tsuto tumor cerebri, blood clots, seizures, skin rashes, and kidney failure. I was fortunate enough to recieve a kidney transplant in 2002, but in Dec of 03 had to have it removed because I got wutz called Bk Virus in it. I am currently working on gettin back on the kidney transplant list. My lupus is in remission right now and has been for a little over 3 years. It is nice to find a group of people to talk to share experiences with and get a better understanding of lupus to help take better care of myself. I hope to get to know you all :)Your New Friend,Laci"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/lupies __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Hi Laci! Welcome to this WONDERFUL group. We will be your " Lupie " family. We are here night or day (me I'm usually online at night until EARLY in the morning). My AIM screen name is AuroraSkyward so if you ever see me online give me a shout. I have had Lupus since I was 21 and now I'm 36. I have brain involvement too. What do you take for your " seizures " ? I don't tell my MAIN Dr. that I'm having seizures...I tell her I'm having " mini-comas " . But I don't know what to take to reduce them. I'm having them about 2 times a week right now. They get soooo bad I sometimes stay in my " mini-comas " for anywhere from a few minutes to a few HOURS. After 30 mins. my husband has to call an ambulance (which the hospital OR the EMT's know NOTHING about Lupus and they treat me like I OD'ed on my meds). I'm interested in talking to someone who deals with these " episodes " . Blessings, In California > My name is Laci and I just joined your group. I am 23 and was > diagnosed with lupus when I was 14. I have had many problems with my > health since then. Rhuematoid arthritis, fibromialsia, tsuto tumor > cerebri, blood clots, seizures, skin rashes, and kidney failure. I > was fortunate enough to recieve a kidney transplant in 2002, but in > Dec of 03 had to have it removed because I got wutz called Bk Virus > in it. I am currently working on gettin back on the kidney transplant > list. My lupus is in remission right now and has been for a little > over 3 years. It is nice to find a group of people to talk to share > experiences with and get a better understanding of lupus to help take > better care of myself. I hope to get to know you all > > Your New Friend, > Laci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 , I havent had my siezures for a few years thankfully! But when I did have them they were caused by my Tsuto Tumor. Which causes fluid to build up in the brain, which would reslut in siezures. They tried many things with me, dilantin, spinal taps, a shunt in my back to remove the pressure. None of these things seemed to work real well. Then we decided to do this surgery where they make insinsions in your optic nerve, and the fluid will slowly leak out. Since the surgery I am happy to say that I havent had any more siezures! But each person is different and wut works for one preson might not work on the other. And it also depends on wut is causing your seizures. If you would like to talk to me more about this or anything at all feel free to email me. I do not have AIM but I do have MSN Messenger feel free to add me if you like =) Luvs, Laci > I have brain involvement too. What do you take for > your " seizures " ? I don't tell my MAIN Dr. that I'm having seizures...I > tell her I'm having " mini-comas " . But I don't know what to take to > reduce them. I'm having them about 2 times a week right now. They get > soooo bad I sometimes stay in my " mini-comas " for anywhere from a few > minutes to a few HOURS. After 30 mins. my husband has to call an > ambulance (which the hospital OR the EMT's know NOTHING about Lupus > and they treat me like I OD'ed on my meds). I'm interested in talking > to someone who deals with these " episodes " . > > Blessings, > > > In California > > > > > > My name is Laci and I just joined your group. I am 23 and was > > diagnosed with lupus when I was 14. I have had many problems with my > > health since then. Rhuematoid arthritis, fibromialsia, tsuto tumor > > cerebri, blood clots, seizures, skin rashes, and kidney failure. I > > was fortunate enough to recieve a kidney transplant in 2002, but in > > Dec of 03 had to have it removed because I got wutz called Bk Virus > > in it. I am currently working on gettin back on the kidney transplant > > list. My lupus is in remission right now and has been for a little > > over 3 years. It is nice to find a group of people to talk to share > > experiences with and get a better understanding of lupus to help take > > better care of myself. I hope to get to know you all > > > > Your New Friend, > > Laci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 , I havent had my siezures for a few years thankfully! But when I did have them they were caused by my Tsuto Tumor. Which causes fluid to build up in the brain, which would reslut in siezures. They tried many things with me, dilantin, spinal taps, a shunt in my back to remove the pressure. None of these things seemed to work real well. Then we decided to do this surgery where they make insinsions in your optic nerve, and the fluid will slowly leak out. Since the surgery I am happy to say that I havent had any more siezures! But each person is different and wut works for one preson might not work on the other. And it also depends on wut is causing your seizures. If you would like to talk to me more about this or anything at all feel free to email me. I do not have AIM but I do have MSN Messenger feel free to add me if you like =) Luvs, Laci > I have brain involvement too. What do you take for > your " seizures " ? I don't tell my MAIN Dr. that I'm having seizures...I > tell her I'm having " mini-comas " . But I don't know what to take to > reduce them. I'm having them about 2 times a week right now. They get > soooo bad I sometimes stay in my " mini-comas " for anywhere from a few > minutes to a few HOURS. After 30 mins. my husband has to call an > ambulance (which the hospital OR the EMT's know NOTHING about Lupus > and they treat me like I OD'ed on my meds). I'm interested in talking > to someone who deals with these " episodes " . > > Blessings, > > > In California > > > > > > My name is Laci and I just joined your group. I am 23 and was > > diagnosed with lupus when I was 14. I have had many problems with my > > health since then. Rhuematoid arthritis, fibromialsia, tsuto tumor > > cerebri, blood clots, seizures, skin rashes, and kidney failure. I > > was fortunate enough to recieve a kidney transplant in 2002, but in > > Dec of 03 had to have it removed because I got wutz called Bk Virus > > in it. I am currently working on gettin back on the kidney transplant > > list. My lupus is in remission right now and has been for a little > > over 3 years. It is nice to find a group of people to talk to share > > experiences with and get a better understanding of lupus to help take > > better care of myself. I hope to get to know you all > > > > Your New Friend, > > Laci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 , I havent had my siezures for a few years thankfully! But when I did have them they were caused by my Tsuto Tumor. Which causes fluid to build up in the brain, which would reslut in siezures. They tried many things with me, dilantin, spinal taps, a shunt in my back to remove the pressure. None of these things seemed to work real well. Then we decided to do this surgery where they make insinsions in your optic nerve, and the fluid will slowly leak out. Since the surgery I am happy to say that I havent had any more siezures! But each person is different and wut works for one preson might not work on the other. And it also depends on wut is causing your seizures. If you would like to talk to me more about this or anything at all feel free to email me. I do not have AIM but I do have MSN Messenger feel free to add me if you like =) Luvs, Laci > I have brain involvement too. What do you take for > your " seizures " ? I don't tell my MAIN Dr. that I'm having seizures...I > tell her I'm having " mini-comas " . But I don't know what to take to > reduce them. I'm having them about 2 times a week right now. They get > soooo bad I sometimes stay in my " mini-comas " for anywhere from a few > minutes to a few HOURS. After 30 mins. my husband has to call an > ambulance (which the hospital OR the EMT's know NOTHING about Lupus > and they treat me like I OD'ed on my meds). I'm interested in talking > to someone who deals with these " episodes " . > > Blessings, > > > In California > > > > > > My name is Laci and I just joined your group. I am 23 and was > > diagnosed with lupus when I was 14. I have had many problems with my > > health since then. Rhuematoid arthritis, fibromialsia, tsuto tumor > > cerebri, blood clots, seizures, skin rashes, and kidney failure. I > > was fortunate enough to recieve a kidney transplant in 2002, but in > > Dec of 03 had to have it removed because I got wutz called Bk Virus > > in it. I am currently working on gettin back on the kidney transplant > > list. My lupus is in remission right now and has been for a little > > over 3 years. It is nice to find a group of people to talk to share > > experiences with and get a better understanding of lupus to help take > > better care of myself. I hope to get to know you all > > > > Your New Friend, > > Laci Quote Link to comment Share on other sites More sharing options...
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