Lupus site(SLE)- information on systemic lupus

Here is a selection of comments I have received from Lupus sufferers.

Personal stories 2
Personal stories 3
Personal stories 4
Personal stories 5
Personal stories 6

"My name is Lauriane Plaatjies, I'm 21 years old and have had lupuis since 1999. It started with a viral infection and was diagnosed only after my fingers turned blue and numb. I'm studying Office Management & Technology and hope to graduate the end of the year. My worst problem is coping with the fatique and listlessness, I just don't feel up to anything anymore. I've lost contact with most of my friends cause I don't have the energy to go out with them much. I have two younger sisters who think that I am boring because I don't do things that normal 21 year olds do, This really hurts as they have no idea what I'm going through. I'm a very private person and don't often talk about my feelings, so my friends and family are often left in the dark, as a result they are totally clueless of my pain and daily sufferering and I suspect that they think that its a drama show on my side. I have the most amazing boyfriend, he is truely my life line-I thank god for him, but am afraid that some day he might need more than I can offer and often contemplate breaking off the relationship to spare him. Anyone please write to me at [email protected], as u can see I need the friendship."

"I found this site several months ago but did not respond to the many messages. I too have SLE and multiple other disorders. I am on a variety of medications for seizures, my heart, blood pressure, stomach, chronic pain and fibromyalia. I started on Methotrexate about a year ago after Plaquinel and Prednisone stopped working. That combination has provided some relief but is starting to wear off. The fevers, migraine, severe pain, forgetfulness, chest pain etc. have returned. Any suggestions on how to deal with the pain. I am trying to avoid pain medications but after being awake for 20+ hours and unable to rest it is necessary. I am still trying to work and have to attend college as well to obtain my bachelors degee to keep my job. I was hospitalized last year with chest pain and was started on a weekly dose of Methotrexate. I was able to take leave under the FMLA (Family Medical Leave Act) but my protected status ended in May. I am hoping to get some information! about disability and especially my rights. I have been encouraged by my immediate supervisor to seek legal advise. Any remmendations? Please respond to [email protected] Thanks and God Bless!"

I'm looking for pen pal or other "lupies" to correspond with....My name is Rose. I'm 41 and have been sick for about 6 years. I recently married, have no children, b ut do have 2 beautiful lab mix "roommates".

I try to exercise when I'm well enough.....love reading,. currently writing a children's book (desperately seeking publisher/agent)....volunteer with retarded adults. (with my dogs)...

Was in high tech marketing most of my career... The SLE affects me with tremendous fatigue, major leg problems (like convulsions), hives, nausea, feaver, hand and joint difficulties, sun reaction, leukoderma (loss of pigmentation in patches), Raynauds and mild kidney involvement. My leg problems often make it difficult to sleep and are sometimes intolerable. Have a prescription for "sequential compression device"...but b attling with insurance to try to get this...Use a "TENS" unit, and splints for legs, feet, arms and hands.

Have had a hard time coping with this change in my life...as up until the time I got ill, I'd been sort of super "type A" personality, and much of my identity & self-esteem came from my work and external "achievements". Spent about 3 years doing the thousands of doctors and tests stuff...then got sick of going to all the doctors and narrowed down to a team of 2 (primary care - who is willing to treat the lupus in a "team" approach with me)....and neurologist.

On a million and one (so it seems) meds...& (stupidly) I often don't take as much of the meds as I should as my stomach reacts so badly with nausea and vomiting.

Feel like SLE is a rather "isolating" disease because we all have such different symptoms, lack of "curative" meds...and just in general that the world of chronic illness can be like being in a bubble...hard for others to understand what you're going through. (espec. because I usually look rather normal)

My e-mail address is: [email protected]. Thanks to all for sharing their stories, and especially to anyone who might want to correspond.

(anyone else having the pigmentation problem (loss of) and know of any topical meds that can address this?) (anyone else also frustrated with rheumatologists? My experience with rheumatologists has not been good or productive. It seems if one is not in a life-threatening situation, that they don't have the time for you....or maybe just aren't interested cuz there are no easy answers.

"So wonderful to know one is not alone! I had been having "problems" since the age of age of 17 (I'm now 38). I'd been labeled "sickley" and a hypochondriac. It had gotten to the point that I was very depressed and would not go to another Dr. I prayed for something to "show" the Dr's what was wrong with me. I ended up with my first malar rash. Thank God for the rash! I now know the fatigue, joint pain, muscles aches, muscle weakness, vision problems and other complaints too numerous to mention are not in my head! How awful for us to not only feel sick but to be treated like we are crying wolf! Almost every story is like this. I think Dr's should read these pages. It has been a difficult 21 yrs for me and I have lost my self-esteem through this. Knowing that there is something makes me feel a little stronger...I did have one long time friend remark to me " Are you happy you finially have something"? We are not friends anymore...so please be supportive to us sick people..even when we have not been diagnosed..."

"Hi my name is Ruth Figueroa. I am 20 years old and I was diagnosed May 28, 1999. Unlike many of you, it did not take years for me to be diagnosed. I had a very bad flare up four months before I was diagnosed. Docters did not know what it was. They said I maight have Juvenile Arthritis and that my body might evenually become badly deformed. I began taking 1200mg of IBprofin which is very strong for a 5'1" woman who weighs 111 pounds but that was hardly working. Finally I was sent to a Rhemotologist who right away knew what I had. I pretty much had all the symtoms like the sores in my mouth and bleeding through the nose, anemia, weakness, sleepyness all the time and especially servre joint pain. My fingers began to stiffen and also my knees. Soon after I was unable to dress myself or brush my hair or teeth without extreme pain. That was when I wasn't on the Ibprophine. Now after trying so many medicines i am on Viox, Methotrexaid, Prednisone, Plaquanel. K! ! now I am experiencing many knew complications such as very bad headaches and nausia. It is very rare that I may get a day where I am without some sort of pain. The hardest part, as I read your stories so do other, is that on the outside I do not look sick which makes it hard for other people to understand the extreme pain that I am in. I say this because the very few friend that I have now seem to think that I dont want to be with them any more because I always say that I don't feel good yet I look fine. I seem to now want to stay home more and just relax or sleep. To them I may just seem boring and lazy. At time I too think that. I also have a boyfriend who says he understand But I feel at times as if he should be with someone who has the streght that he has to have fun. I don't have much of that. Well without my mom it would even be harder for me to live. She I feel is the only one who truly sees and feel my pain. She understands when I cry, which is very often an! ! d when I am depressed. Other think I exagerate and should not have much of a reason to cry. There is so much to say about this terrible disease. May God Bless all of you and your families. Don't let anyone make you think your pain is all in your head because it is not. Stay Strong and keep your head up high."

") I am a 24 year old female just recently diagnoised with lupus, but have had symptoms for years. First was joint pain that could not be explained. It was so bad it took me 15 minuets to even get out of bed I was so stiff. Then this past summer my hair started falling out. The dr only said to use rogain, which of course didn't work. In May I had to go to urgent care because of the pain again. Luckly the dr I saw did blood tests, which is not normaly done there, and sent then to my pcp. It took almost a month and 9 tubes of blood to figure it out. The hardest part was having my supervisor force me to take a lower postion with less hours and less pay. But I am lucky in the fact that my boyfriend and family help and support me, and make sure I take care of myself. I have been taking meds to help, but still have days where I hurt. The only problem I have now is a burning in my fingertips, which can get so bad they turn bright red and if I touch my boyfreind he can feel the heat. All I can do is pray I wake up in less pain than when I went to sleep. "

"I was recently diagnosed with lupus, I sometimes wonder why the doctors couldn't have found it before now. It has been 3 years since my first symptoms. I knew that something was not right. I was misdiagnosed with several ailments and was beginning to think it was all in my head or that i was making it up. It's funny how you even start to doubt yourself. But something told me to keep digging keep insisting that something has to be wrong. I feel so much better now that i know what it is i am facing. It is the unknown that is scary. I am a mother of 3, sometimes the kids do not understand that mommy needs a time out. But my family is very sweet and kind and are very willing to help out. My friends are concerned for me, but they almost act as if i am ready to kick the bucket. I tell them God is not ready to take me home yet. I am active in the church. My husband and I have a bus ministry and we teach Sunday School, some days I just don't feel like doing anything, but ! ! my life, even my life with lupus has a purpose, and so does yours.write me at [email protected] "

"i am a 36 year old women who has been diagnosed with fibromyalgia,raynaud's,thyroid problems,depression and finally lupus. since 1999 i have been in the hospital three times. i have had ulcerations on my fingers and thought that i was going to lose my fingers. they said that it was caused by the raynauds. i was on 60mg of prednisone and didn't even know where i was at. it was a terrible experience for me. i have been sick most of my life and never had been diagnosed for years. i had carpal tunnel surgery because they thought that that was what was wrong but i continued to constantly be in pain. I have been to several doctors and finaly one did give me a diagnosis. i am on 12 different medications now but am feeling alot better for now. I am afraid that i will have another flare up and that i will eventually lose my fingers. I have gotten through all of these medical problems by trusting and believing in god. I know that he will not put on me anything that i can't bare. i feel sorry for anyone that has to go through all of the complications that come with lupus. i will be praying for everyone and pray that there will be a cure for lupus soon. god bless you." karen

"I am currentlyin the process of trying to get a diagonosis form my Rheumatologist. I am finding it very frustrating! I have a positive ANA,fatigue, joint pain, pain and burning in my feet and hands, msucle pain and skin pain, anemia and possible endocrine problems. Recently, I have developed severe depression and panic attacks which are uncharacteristic. I think after talking with the Dr. the last time he thinks I am crazy, which doesn t help things. Sometime I think that My husband thinks I am crazy too. The only thing that sustains me is my relationship with Jesus which is growing every day. That is the up side of all of this. I can relate to the frustration and pain that many of you are going through. Some of my symptoms I can trace back to age 8 and have continued off and on since. Just recently, so many things were happening at the same time I went to the Naturopath and M.D. to see what was going on. I am currently 43 years old. I am just praying that the Lord will heal or that I can at least get a proper diagnosis."

"Hello, My name is Candy and I was diagnosed with lupus in February 2000. I am a certified nurses aide and i had to quit my job due to the joint and muscle pain I experience from the lupus. I am 30 years old and the mother of 2 wonderful boys ages 7 and 9. I also have the butterfly rash on my face and break out all over my body when it is warm outside. I am not being treated with any medications right at this time but will be very soon. I have very bad days when I can't even get out of bed because I am so weak and in so much pain. I am so lost because my children don't understand why mommy can't play with them every day or get up to see them go to school in the mornings. I also get embarrassed when I have to go shopping bcause people look at me as if I have somewkind of contageous disease and they basically call me a freak. I have a wonderful husband and he trys to take care of me but he is fighting cancer himself. Thank you for listening to my story and you can feel free to email me anytime at [email protected] Thank You and GOD BLESS" Candy Brown

"I am 20y/o and have been living with Lupus for two years now. It all started after a bad break-up with my fiance'. My lymphnode swoll and I began to sleep for up to 36 hours with no food, beverage, or sign of bodily functions. It was like my body would totally shut down. I started to get sick two or three times a year and that was unusual since I was never sick growing up! I went to work for a company that encouraged me to see a doctor they knew, so I did and he found nothing at first. He thought that I had sinus infection! He is a family practioner and ob-gyn, but after several visits and a hospital stay, he found signs of Lupus. He referred me to a rheumatologist that discovered my Lupus, sjogren's syndrome, and Raynauds at their begining stages. I am very fortunate that we found it as early as we did but at 18 it is devistating to know that I have to live the rest of my life with these diseases. I am now expecting my first child and I am very afraid that she will have Lupus because of me! So far my doctor says getting pregnant is the best thing that could have hapopened to me because there have been no signs of flares. I hope that I can be a good mother considering the pain I live in from day to day and I pray that my child will be fortunate and not have any problems due to my illness. I was touched by everyone's stories and they shed a lot of insight on my situatuion. I'm sure we will all get throught this together!"

"Hi. My name is Amy. I am a 44 year old wife and mother. I'm from south Alabama. I have had lupus SLE for 10 years now. It has been the most horrific experience of my entire life.I've just started getting on these Lupus sites and thank God i did. It sure gives you some peace knowing others understand. I have a desperate problem that i am searching for others who have had the same. I've got to make a decision real soon. I have thrombocytopenia ( low platelets ). Since all else has failed i have to decide between spleen removal or chemo. Can anyone help me??? All help would be appreciated greatly. You may email me directly if you want at: [email protected] Thank you with all my heart, Amy Thanks so much"

"I'm looking for pen pal or other "lupies" to correspond with....My name is Rose. I'm 41 and have been sick for about 6 years. I recently married, have no children, but do have 2 beautiful lab mix "roommates". I try to exercise when I'm well enough.....love reading,. currently writing a children's book (desperately seeking publisher/agent)....volunteer with retarded adults. (with my dogs)...

My leg problems often make it difficult to sleep and are sometimes intolerable. Have a prescription for "sequential compression device"...but battling with insurance to try to get this...Use a "TENS" unit, and splints for legs, feet, arms and hands. Have had a hard time coping with this change in my life...as up until the time I got ill, I'd been sort of super "type A" personality, and much of my identity & self-esteem came from my work and external "achievements".

Spent about 3 years doing the thousands of doctors and tests stuff...then got sick of going to all the doctors and narrowed down to a team of 2 (primary care - who is willing to treat the lupus in a "team" approach with me)....and neurologist. On a million and one (so it seems) meds...& (stupidly) I often don't take as much of the meds as I should as my stomach reacts so badly with nausea and vomiting.

Trying to figure out how to re-invent my life. Seems many lupus folks still work full time, etc. I can't seem to do this...due to the 3-4 hours/day when I am really bad. Am applying for SSDI..but finding it a demeaning process... Feel like SLE is a rather "isolating" disease because we all have such different symptoms, lack of "curative" meds...and just in general that the world of chronic illness can be like being in a bubble...hard for others to understand what you're going through. (espec. because I usually look rather normal)

Very interested in hearing from anyone who'd like to be pen pals by snail mail...or anyone in S/W Fl (Fort Myers/Sanibel area) ... interested in some sort of "support group". Very curious about any thoughts on climate/location and its effect on SLE. The heat, sun and humidity here don't seem so good for the illness...but it also seems (altho I'm not certain) that temps lower than 40 degrees bring on flu-like flare ups. My e-mail address is: [email protected]. Thanks to all for sharing their stories, and especially to anyone who might want to correspond. (anyone else having the pigmentation problem (loss of) and know of any topical meds that can address this?) (anyone else also frustrated with rheumatologists? My experience with rheumatologists has not been good or productive. It seems if one is not in a life-threatening situation, > that they don't have the time for you....or maybe just aren't interested cuz there are no easy answers."

"my name is belinda i am 23 years old and i was diagnosed with S.L.E when i was 19.The day after giving birth to my son i noticed a big red pimple on my face that pimple got larger and in the following weeks turned in to a butterfly rash my GP made an appointment for me to have some tests in the mean time i was riddled with arthirtis i couldnot even get up to feed my son my husband would have to carry me to a hot shower to ease the pain i was constantly tired and just feeling sick this should have been a time for me to enjoy my baby instead i just wanted to sleep all the time when i finally was diagnosed i just didnt understand it i had never heard of lupus nor had anyone i know my specialist put me on prednisone,plaquinil,immuran and cyclosporin i felt much better straight away my rash dissapeared the athiritis was under control but i put on so much weight it was making my depressed now four years later i am not on any medication except prednisone to heed away the! ! athiritis and thank god my sle is under control i still feel extremely tired all the time which every one finds hard to beleive and they seem to think i use sle as an excuse because im lazy and also my hair is falling out but inm just thankful that im not regulaly in pain anymore and its nice to know theres other people who know how i feel.I would love to get in contact with any lupus suffers and hopefully make a freind who understands please contact me on Belinda [email protected]"

"I feel your pain. I am 29 year old female, diagnosed at age 17. In and out of the hospital, the slightest infection will trigger lupas. I actually cried reading this site.I saw a part of my problems in every story I read. I could write of my ups and downs, but I don't think there is enough space. Everyday is and will be a challenge for all of us with lupas. I'm glad to find this site, raeding these stories will help me cope with mine." EMAIL @ [email protected]

"My name is Julie I am thrilled to run accross this web site and meet other people who share this disease Lupus. I was diagnosed in 1984. It is now 2000, I am on permanent Social Security Disability. I have a wonderful doctor that helped me to get on it. It took 8 years. I have had such a hard time with this disease. But I am very fortunate to have a wonderful husband and family and two wonderful kids, along with 3 wonderful step children. I have had everything from the horrible joint pains to the unbearable pain in my feet with inflammation. I have had kidney involvement...and inflammation in my lungs and heart. Some days I feel like I can just die. I have the drug predinsone...and I am currently trying to get off of it. I am taking a new drug "rava", and was taking cytoxin. I also take plaquenol, and other heart medication, and my stomach is a mess...so I take medicine for that too. I Love all you people...and it was wonderful to read your stories. Keep a smile....and always when laying down...look up, because God Loves you...and he is there. Anyone can email me at [email protected]"

") I have had lupus now for about three years. I tried different medications for the joint pain and anxiety and depression that comes along with it. I was put on an SSR, which was supposed to be good for the pain. It worked great for the pain but I lost 15lbs. I am very thin to begin with so this wasn't good. I felt horrible. I finally decided to try some alternative medicine. A good friend does Kinesiology. She started me on a detox program and vitamins. This is the first time in three years I can actually do things like play volleyball and golf and still be functional the next day. I tried other medications that also made me sick so I didn't feel I had anything to loose. Another thing I checked into is myofascial release through a physical therapist. Between the two it has worked wonders. I am feeling really good. I still get tired but I can actually function. This may not be for everyone and if you ask your rheumotologist of regular doctor you will ! ! not get a good response from them. I know I feel much better from what I am doing. When you are in so much pain you can't move I figured I didn't have anything to lose. I need to go for more myofascial release but it is hard to get a referral because some doctors don't believe it is medically beneficial. Do some research." Deb

"Hi! I really like your site.It's been a huge inspiration to me.Im one of many lupus patients are out there diagnosed with the lupus disease "membranous lupus nephritis," and from my opinion it sounds pretty scary. I found out that I was diagnosed from this disease from December 1999, to about now. The way that i found out that I had this disease was through an eczema study that my dermatologist recommended me to because I had eczema since I was a little kid.Anyway, making progress through the study, I had to take a urine test.Results came back and the doctor said I was leaking blood and protein in my urine. Then it was a trip to a kidney doctor, and he told me to go through a kidney biopsy. All went well, and was discharged that night.I didn't feel the same when I came back from the hospital.I felt miserable because I had this disease and didn't know what it would do to me.I felt like my life would end here, at that particular moment.Still today, I feel like as i! ! f I did something wrong, and all I have is myself to blame for this mess.But I'm not giving up.I have hope there will be a cure soon and that I have much faith in god that he will pull me through this burden and also the other patients out there diagnosed with lupus.At times I worry whether I'll ever see my very own kids grow, or have a family of my own.Im only 16, and it's pretty early to think about a family of my own :).Anyway, I hope I didn't take much of your precious time and I hope I didn't depress you with my story.It's just so hard looking out to the rest of the world that have a better life, and wondering where you'll be in the next 10 years or so.Well, im going to wrap thingws up and say it's been nice seeing your site, and I will pray for you and all other lupus patients out there."

"The 27July I went to may doctor to get relief from scratches and bites cutting out weeds in yard. At that time the doctor asked if I was taking any estrogen. She put me on Evista. I slowly swole up at joints and wrists hurt, muscles were hard, back hurt, etc. A week later I complained on hands and wrists. She had me to get carpal tunnel splints. With the drug swelling and splits re-stricting my hands were numb.. On labor day I was reading the side effects of Evista and promply took self off. The second week in September I finnally go in to doctor to find I had toxic poisoning of the body. I could lay my head down and never wake up.. Blood tests were run that pointed to lupus sle. She asked to do a second blood test. Since then I have been on pain pills, steroids and etc. This is my third dose of sterioids which conscerns me. I have a job that I need. My nerves are gone plus I am sore about drug induced by Evista. Has any one else out there gotten lupus from Ely lilly' evista. Please contact at [email protected] thanks," Joyce

"I'm a 49year old black female, in 1989 notice a small light patch in on my scalp in the top part of my head, over the years the patch have grown and now have hair loss. I went to a demotologist then to a rhemotologist after trying different over the counter hair loss products. Just a month ago I was told I have lupus of the scalp, and was give steroid injections. I have read all the different symptoms and endurance on this site, but no one seem to be suffering the way I am. I wear a wig, and occasionally feels pain, or itching in the area. If anyone experiencing scalp lupus and want to share e-mail me at [email protected]"

"My problems started in 1989 while I was serving in the Army. I was stationed in Wasshington DC at Walter Reed army Medical center where I woked as a Licenced Practical Nurse.I started complaining of fatigue and joint pain and was brushed off as a lazy soldierand accused of "malingering" one of the military's favorite words to decribe someone who feigns illness to get out duty. How the doctors and my superiors think that I could fake swollen joints and fevers,I'll never know. Eventually I became depressed and "self-meddiacted " with alcohol. Unfortuntely after a drinking binge I was called in to work a shift but I was drunk and was ordered to come in anyway, afet reporting for duty I was escorted by MPs to the ER for being drunk and then admitted to a psych unit for detox. This was the beginning of my spiral downward because then I no longer had my crutch and Iwas more depressed than ever. Eventually I was sent to residential treatment program at FT. Gordon Ga., wh! ile there I developed numbnes and tingling in my legs and arms, the docs there did nothing about those complaints but they did start me on antidepressants. When I reurned to washington the symptoms worsened, My joints hurt and I could nor pass PT which is so important to the army. Eventually I became so depressed about not being taken seriously that I ended up back on a Psych unit. I had migraines all the time, my joints hurt and I could not function, Finally one DR decided to consult an ortopedic Dr who ran a couple of test and told me that I had positive antinuclear antibodies and might have Lupus. Unfortuanately the army concentrated on my depression and even had the psychiatrist convince me into having electroconvulsive therapy which almost destroyed my memory. I was medically discharged from the service with a diagnosis of chronic depression. The army did not want to include anything about lupus because they said they weren't sure and also they would have to give me a hig! her disability if they did. I am now 40 yrs old and have been strugling with pluerisy, chest pains, pnuemonia, chronic bronchitis,allrgies, and now my civilian Doc beleives I have asthma. I have been having more joint poain the last few weeks and went to see a VA doc but was givin the runaaround.I was just rleased from the hospital today because Wednesday night I felt like I was having a heart attack, the test show no heart attack but my chest pain is severe.My point is that I am tired of the brushoff and I have decided to fight. I am going to see acivilian rheumatologist and find out once and for all what is wrong with me and then I am going to the DAV and get the VA to acknowledge what is wrong with me. I have rad up on lupus since my discahrge and I have most of the symptoms. I am trying to earn a degree in Social Work right now but being ill is slowing me down and I want once and for all to know I am not crazy. I believe that if this were a disease that affected mostly men! then the military would sit up and pay attention but since I am a woman and Lupus is not so easy to diagnose I feel I have been jerked around.I am glad I found this site I am sitting here at almost 2 am because I cannot sleep due to painin my joints nad in my chest.I f anyone woul like to email me my eamil address is [email protected]"

"I am 19 years old, and I was first diagnosed with lupus when I was 2 years old. At first the doctors thought it was maybe a UTI or leukemia (with my high WBC count), but it was later discovered that I had lupus. I had a blood transfusion, was put on Prednisone for months, and for years after, I constantly had to see doctors and get blood work done. I haven't had a flare up since then, but at the end of Feb 2000 I was diagnosed with Bell's palsy (partial facial paralysis), and it was thought maybe a flare up triggered the BP, because it has been said that there is a connection btwn BP and auto immune disorders. All my blood tests came back normal, but I still have to go see a rheumatologist. Not a day goes by where I don't think of lupus. I thank the doctors who saved my life from the bottom of my heart (Dr. Brown and Dr. Hasan-bless her soul, she passed away about 10 years ago), the ones who were smart enough to discover that a 2 year old can have lupus. I lead a normal, active life..and I have for a long time. I've played softball since I was 6, and I have always been active in all kinds of things. The lupus has never stopped me from doing anything...the only thing I worry about is having children...I have a few years to go before I start, but when the time comes, I want children. I have felt alone in the past...but after seeing this site, I feel so much better, knowing that there are others my age with the same thing. Thank you everyone, for listening to me, and for letting me read your stories. It has been a great help. Feel free to email me at [email protected] (that's a zero, not an o). Take care :) ~Amanda"

"I was diagnosed with having ITP in late 1996- after being admitted to the hospital twice within 4 months. (My systoms included low plattelet count, low white blood count, flu -like signs, etc.) I was initially told I had mono & Strep throat - then finally told I had ITP. Been through a lot, since then... I was on prednisone for a year+, had to go to my hemotologist every 2 weeks for blood counts. Was finally "weened" off prednisone. I had awful side effects from that drug - lots of weight gain, rage and an enormous appetite!! I have recently had a "flare-up" / horrible joint pains / swollen fingers - to the point that there are days in which I can't hardly function / extreme fatigue / rashes on my legs and arms... I am now told that I probaly have Rheumatoid Arthritis...and possibly a "cousin " of Lupus. My mother has believed all along that I have Lupus. I am now being referred to a Rheumatologist - with hopes that I can get some help! This is a very stressful situation, and I TOTALLY understand with a lot of the stories. May GOD BLESS YOU ALL!! and hope that one day there will be a cure for LUPUS!!"

"My name is Marcy and I was diagnosis with lupus in June of 1998. My sister made me make an appointment with the Dr. because I could not move. The only relief I felt was in the bath tub. My GP told me right there and then that it was either Lupus or Arthritis. My mother suffers greatly from (arthur) as we call it at home. So i figured that was it for me to. Well I was wrong, My Gp called me in 1 week after the blood work and told me it was Lupus. Now what? How do you fix it? What do you need to do? I didn't realize that it was a life long illness. But she sent me to the best of them all(DR.s) and I didn't like them. This Dr. wanted to put me on 3 Plaquil pills to start. I said no and found another Dr. The Dr. I go to now is the same Dr. my mother goes to for her arthur. Family history you know. I now take 1 planquil daily with 2 on Monday and Thursday. I also take calcuim with vitamin d , flaxseed oil(the flaxseed it's self about did me in) and a cell protector, ! all from the gnc. I do very well. I do suffer from Raynauds. And I do have the rash on my face. If people ask me if I'm ok because they know I have the diease. I just tell them I'm having a lupus moment. I consitter myself very lucky, I do have a wonderful family, A very understanding husband. He will cook supper if I'm not up to it. I have two children One 17 and the other 8. My 17 year old will watch the 8 year old if I need a nap, or a bath. You know there's something about a bath with bubbles, soft music and candles to make all the stress go away. I do work two part time jobs, I'm a secretary for a church and a cook at the school. That keeps me going. Excerise is also a part of my day, just to take a walk or ride the bikes with the kids helps to keep me going. I would like to chat with anyone else about how they are feeling. you can contact me at [email protected]. I will say a prayer for all of you, for I know what you are going thru. God Bless."

" If it wasn't for my strong faith in GOD, my loving husband, praying mother and family members, I would have gone crazy by now. I have been suffering with lupus since 1984. I have had my good days and my bad days. There are times when I feel like just giving up and closing my eyes, because the pain can be so unbearable at times. I've had more than three TIA'S. I have been told that I have several lesions on my brain. At times it is very hard for me to concentrate on what I am doing. I feel like I have PMS 24 hours a day. I NEVER KNOW WHAT IS GOING TO HAPPEN TO ME NEXT..... One minute I am happy, the next minute I am sad.I wake up with pain in my joints every day of my life. Lately, for the past few years I have been experiencing pain in my toes, bottom of my feet, and in my legs. The pain is so bad, that I have to stop , dry my tears and say a prayer before going on.I've gone to specialists and taken a battery of tests and to no avail, they say there is no reason for me to be in any pain. But I know that the pain is real, I hate this pain. I guess this is just another cross for me to bear. But through it all God IS GOOOOOD ! I will continue to pray for others with Lupus, and their families. I will con- tinue to keep the faith and put my trust in him because it was has GRACE and MERCY that has brought me thus far."

") I have been feeling "lousy" for over a year now. The first onset of what I'd call an attack was 3/3/99 - we had found out that day that my husband's brother had died. A very stressful day to say the least. Since then I have gotten progressivly worse. I was dx w/costocondritis after 3 trips to the ER (thinking I was having a heart attack). My dr said it would go away in 2-8 weeks. Three months later he didn't seem to think there was much wrong with me so I sought out another opinion. The second dr informed me that I was DEPRESSED (well, no kidding doc, I've been sick for a long time now) and put me on anti-depressants. I played the game for 3 months and quit taking them and never went back to her. For the last 6 months I have been battling with chest pain, severe fatigue, pain in my hips, knees and feet, and "head fog". This week I saw a 3rd dr who, lo & behold, seemed to be onto something. He has put me on NSAIDS and nortriptylene (sp?), has ordered my ot! her medical records, and wants to see me back in 3 wks to test me for Lupus. The reason he is waiting is he doesn't want to duplicate any tests due to cost. I've been on the net checking out websites regarding lupus and have 5 of the typical symptoms of SLE. After reading this info, I've come to realize that I've had some of these symptoms for several years off and on. One site said the average time from onset of symptoms to dx was 3 years. The sad thing is from what I've been through and read from others is that we tend to be written off, or even led to believe that it's all in our head. I know my body, and I know when something is not right. I'm so thankful to have been led to this new dr. I hope he's able to finally get to the bottom off all of this so I can at least work on getting healthy again. Thanks for setting up this forum...it sure does help to "vent" to people who know where I'm coming from."

"I'm a 19 year old black female, who has SLE. I was diagnosed with Lupus when I was 14 years old. It took doctors a few months to come up with a diagnosis. I am currenlty on several mediactions, including predinsone. I also have cytoxan treatments once every month. They are not so bad. My doctors make sure they give me drugs to sleep during the procedure.As long as I am sleepm I don't really feel anything.From reading other people stories I see that I don't suffer as much as they do with their side effects and treatments. I guess every Lupus patient deals with it differently. It does make me depressed and sometimes suicidal because things are not going as I want them to be. But now I just take things slowand try not to let myself think that way, Why kill myself before it is my time anyways?I have began to learn to live with Lupus now since it is going to be apart of my life. I enjoyed reading many of your stories on the net. It's nice to know that there are other! people like me. Email me: [email protected] "

"Hello, I am glad that I've found this page. I am writing to everyone who is suffering from Lupus and also to the people who does not know much about the disease. Today is march 23, 2000, and as we speak my father is in the hospital now. He just had a toatal hip replacement last week Monday due to lupus. He has had thid disease nearly 25-30 years. I truly believe if detected pretty early and treated you will live a long and almost if not normal life. This is my fathers second surgery, the last one was a partial hip replacement.I pray for all of, and I know that God will not put no more on you than you can bare. You can e-mail me at [email protected]"

"I was diagnosed with SLE four years ago. It took over six months to get a clear diagnoses. The doctors had no idea what to do for me. I was very close to not getting out of the hospital alive. When I did get out I was so depressed and confused. I was taking so much medication and I was always tired and depressed. I am now 19 years old and trying my best to live a "normal" life. I recently started having kidney problems and the doctor put me on cytoxan. I have already taken 6 treatments of cytoxan each month and I still have a year left to go. Thankfully, starting this month I only get the treatments every other month. Two years ago I met a wonderful guy. We are getting married next month (March). He has been so wonderful and supportive. I cannot express how much I appreciate the support from my family and friends throughout my situation. I have learned not to let this obstacle get in my way. To me it is not an illness but just one of those extra things that I need to deal with. I have a wonderful outlook on my life and I wish the best for everyone out there who has Lupus. :)Rachel:) "

"I was diagnosed with Lupus when I was 12, just about 2 weeks after my Bat Mitzvah. At first I was very scared. I was put on a lot of medicine, all of which seemed okay at the time. After a few weeks though, my checks started getting very puffy from the prednisone, and I felt really bad. People looked at me funny, and I felt very self concious. I was very upset. Boys wouldn't say "hi" like they used to, and people started saying to me.."what happened to your face," and "you used to be so cute, what happened?" They didn't know I have Lupus. None of my friends know I have it except my best friend Lisa. I still haven't told anyone about it and I am now 15. My life has changed, but I have now learned to live with it.---Melissa."

"I am so glad I found this site! I thought I was alone in this world. When I was just a little girl,I had ceasures.The dr. diagnosed it as epelepsy.I was on medication all my life,but I continued with the ceasures.When I was 16 years old,I had a beautiful son.I never had a ceasure while I was pregnant,so I thought I had out grown them.Wrong,They started again.When I was 18 I had a beautiful baby girl,on Christmas,but she was stillborn.When I was 19 I had another son,he also was stillborn.After that I had several miscarriages.When I was 23 I was hospitalized with a blood clot in my leg.It broke through and went through my heart and lungs.I literally died several times.I said all that to say this.I have had lupus most of my life and didn't know it.It wasn't until the summer of 95 that I got the sickest I've ever been.I went to a rheumatoligist and all the tests were neg.He said I was just depressed. I heard about an md. that wasn't far from my town that was really goo! d in autoimune diseases,so I went to him.Still the tests were almost all neg.I think one of the tests hinted to luous.So he treated me for two years.His wife had m.s. so I felt like he knew what he was doing.He had me on so many drugs til I didn't know who I was anymore.I guess my brain was numb.He councilled my husband because his own wife was so sick,he felt for him.He told my husband I would never be any better,that I would did.He suggested that he find female company to help him get through it.My husband of 21 years was so confused,he listened to him.After he had been unfaithful,it nearly drove him crazy,so the good dr. then put him on depression drugs.We wound up separated and almost divorced. But you know what,that I guess gave me more motivation than I have ever had.The lawyer I went to told me I did not have to suffer. I found the right dr.I do have a quality life I do still have my husband and I am now a country music songwriter! So have faith, get the right help, and for Gods sake,help yourself! e-mail me [email protected]

"This site was very informative! I have been sick now since june all starting with Kidney infections one after the other they told me it was Mono and then they said it was CMV. After 2 months bumps began to appear they attacked mainly my joints and hardened the skin underneath the red bumps somer were as large as my palm and often times you could not tell where bones began or ended they called the bumps "Eumatoses" ( i know i spelled that wrong) It was basically in Latin meant "red bumps" they disabled me from walking day on and day off. I understand that you are not a docter but was wondering if you or anyone else had heard or knew of it being a symtom? I have all the other classic symtoms as well. Docters are not being very good about this so i am currently seeking a new doctor. thanks for whatever info u could give me. Jeseka Fitting ps I am a 21 year old female"

"After reading everyone's personal stories, it confirms that lupus is as frustrating for everyone else as it is for me. I was diagnosed with lupus in 1994 when I was 14 and a freshman in high school. Now I am 20 and a sophomore in college, and just when I thought the worst was over with, something else pops up. I was always told that I had a "mild" form of lupus. I didn't have the "typical" lupus symptoms. (which I am thankful for!) I haven't had much joint pain (knock on wood), and have been able to carry on a pretty normal life. I had a mild flare in high school and was put on Imuran (along with prednisone). Surprisingly this made my hair thin out. I stopped taking Imuran and low and behold, my hair grew back...but this time it was in ringlets. (I had previously had stick straight hair.) I eventually weaned off of prednisone and all medications completely and led a normal life my senior year and my freshman year in college. Just recently, I got bad news of kidney involvement. I had to leave school to come home in the middle of the week to speak to a nephrologist. After 3 hours of being informed of some type of kidney disease, we made an appointment for a kidney biopsy. I was told these procedures are risky, but usually not a big deal.......RIGHT..... Of course I had lots of complications - blood in the urine afterward, PAIN, PAIN, PAIN!!! I went back to school 3 days after the biopsy, only to be taken to the emergency room because of a high fever. Back home I went - to find that I had a blood clot the size of a pancake surrounding my kidney....what next! I was told to take it easy the rest of the week...which meant staying home from school....a week before finals! Things did settle down and I got through finals - somehow! (I was up the entire week - not good for lupus!) The months to come are going to be a test for me I think. I am being treated with prednisone and plaquenil, and monthly intervenous treatments of Cytoxan. I've only had one treatment thus far, and I can honestly say it was hell. I found out from my doctor that the future treatments will be the same if not worse....not something that I wanted to hear!! Because of the treatments, I am transferring schools to a university closer to home and my doctors. It is hard for me to think about because I've almost been forced to leave all of my friends because of a stupid disease. It gets so frustrating sometimes, mainly because I can't control it. I have always been smart, popular, athletic, and determined. But this puts a whole new meaning to everything. I AM STRONG!! I know that I have a lot ahead of me, and the hardest parts are yet to come. Fortunately I have a wonderfully supportive family. Unfortunately, there are a TON of my peers who only see what is on the outside. Right now, things look good, but as many lupus patients know, it can change at any minute. There are plenty of people who don't understand the self esteem crushing effects that lupus has on young adults as well as adults. (prozac has become a friend of mine as well) :) I have come to realize that I have dealt with a lot for a 20 year old woman, and that if my peers can't handle the changes they see or don't see, they aren't worth my precious time and energy. I AM STRONGER THAN THAT! Good luck to all those with lupus, my prayers are with you all! STAY STRONG!! @->->--- Sarah P.S. finals week paid off - GPA 3.8 :)"

"I was diagnosed with Lupus (sle) in 1978, I'm now 42. The biggest problem that I've had to endure besides the constant toxic fatique and nausea (from medications)and relentless daily pain, is to be acknowledged by family, friends and especially my husband. He thinks I make up my symptoms, he thinks I'm faking them to my convenience. He thinks I'm lazy and a procrastinator. It is so hurtful to know that your own family and husband has not and will never be there for you. Thank God, I have stumbled across this site, to be able to have people think I'm not faking. I have no children, but I do have a dog, Cassie who is alot of company when I'm ill. Animals love you unconditionally, no matter what! My husband thinks, I'm a horrible wife, and he's got me to believe that I don't deserve him. When I'am well, which isn't very often these days, I try really hard to please him, but to no avail, he believes our relationship is one sided and I make no effort to make it any differen! t. This is not true. It's truly hard to make a new marriage work when your so sick, its hard to communicate that to someone. Any advice? I would like to hear any and all comments (e-mail me @ [email protected]) God Bless all of you who have experienced this horrible, life robbing disease. Twenty-Five years out of 42 is a long time. More to tell, please write." Teri

"I am 52 this May, and was diagnosed with Lupus just a few weeks ago. I knew that something was wrong a long time ago and never sought medical treatment. I had no idea it was Lupus just lousy arthritis. I am the type of person that will avoid doctors. In fact, until now, it was close to six years since I saw my last doctor, and I only went to him because of a bad cold/flue/pneumonia I couldn't shake. I have been going on for years with pneumonia reappearing every few months. And if co-worker or family member would catch a virus, I was sure to follow. My joints have ached and swelled to the point where I've dropped things and stumbled, and still, I refused to see a doctor. My last struggle with pneumonia was awfully bad.. Christmas is when it hit me. It was my sister who made an appointment and marched rear end into the clinic. Of course, I wasn't going to make easy for her or the doctor. I have no trust at all in the medical field. I felt that most of their work is "guess work," and I can make just as good of preditions as they (or, come close, anyway). I bet you can tell by this writing, that I'm kind of difficult to get along with. Okay, it's true. But I have lots of dogs and they love me, no matter what!! I'm one of those widows who never married again, just got a lot of dogs. It was a good move on my part. But, to my surprise... I really like this doctor. He spends time filling me in on everything. Last visit, I was in the exam room for almost two hours talking about treatment and tests. He is very informative. I am very confident in his judgement. However, I have a problem. I hope that someone can help me with information. My connective tissue problem will progress, but not as fast since I'm under treatment. So are a number of other things progressing. What I would like to know is what do you do when you can't work any more? Is something like Lupus covered under a "disability?" I am so worried about the future. Shannon, that's my sister, and her three children live with me. She is just a few years older than my oldest child and became a widow five years ago. She has very young children, and with me supporting the household, she is able to be a stay-at-home mom. I have obligations and if a time comes when I can't work, will Social Security recognize Lupus? I have managed to secure a great job (which has a disability plan) and maintain a home and I'm so afraid of loosing every thing. I asked the doctor about the future and being disabled, and he said he has a standard for disability, and SS has another. What does that mean? My name is Kathy, and my e-mail address is [email protected] "

" I am a 37 year old mother of 4. Life with Lupus SLE, has been rough. My husband and I own a couple of semi- trucks. And he drives 1 of them. This leaves me home with the kids 3 of them are teenagers and my youngest child is deaf. We just moved to a new area, so our youngest could go to a deaf schol and still live at home. This has put a stress on all of us, especially our teens, leaving their friends and home. One good thing that has happened, is finding a new Dr. in this area whom understands and is very sympathetic to me. He nor any of the nurses have ever made me feel like a whiner or hypocondriac. They even call when I haven't been in for a few days, just to check on me. I am in the middle of a major flare right now, but feel like I am getting a lot of emotional support from friends ,my Dr,and my boss and co-workers. I still work full-time, and my boss is very understanding. My kids get aggrivated a lot of times because of the change in me during a flare-up. I hear,"All you do is sleep" Reading all of your stories have helped a lot. I have a lot of the same symptoms all of you have written about, joint stiffness and swelling, the rash, fatigue, protein in your urine, moodiness,and mouth ulcers. I also have severe muscle cramps in my legs, feet, and around my ribs. My Dr. contributes this to my SLE. Do any of you have this and what can be done besides muscle relaxers to stop the cramps? You are all in my thoughts and prayers, we all will make minute, by minute. Dana I would love to have the chance to talk to any other woman with SLE. e-mail is [email protected]"

"Hi, my name is Roxanne and I'm 38 year old stay at home mom. I live in Alberta, Canada. I was finally diagnaosed with lupus in 1980 when I was 19. It was a relief to know there was really something wrong with me. All through highschool I had some kind of ache,pain,headache, stomachache,hives or something. It was good to know I wasn't crazy. I still have a great connection to my diagnozing doctor. No matter where I move to I keep in touch with him even over the phone. He has been just great. He tells his students that I did every thing someone with lupus shouldn't do. I worked full time for 13 years. Went on vactions to Mexico and the Carribean,in the sun, Had a perfectly normal and healthy son who is going to be 8 in January. But I've had my bad times also. 14 years ago I ended up in emergency and spent 2 1/2 months in the hospital with renal problems. years later I had blood clots in my lungs, which the decided was brought on by the Pill. I have been doing good since then, at least I think that was the worst of it. Now that I'm living in the county my biggest problem is the sun. At this time I take Plaquenil and prednisone, which seems to be working fine for me. I do have days I don't feel like doing anything so thats what I do. But I try to stay busy keeping my son involved in after school activies and in my garden and with my crafts. I try not to dwell on the fact I have lupus, but on the reality I have a son, husband, 2 cats and 2 dogs to keep organized, and a life to live.If anyone would like to email me to talk I would really appreciate it as I don't personaly know anyone with lupus at this time, and sometimes it great to compare notes. My email address is [email protected]. Hope to hear from you."

"Hi! I just wanted to talk to young women living with the disieas. I'm an 18 year old black female that was diagnosed in October of 97. I have plenty advice to give to people on how I deal with this annoying disease. I'm a freshman in college and I'm doing just fine. i used to be an athlete (standing at 5'11)but after i got sick I lost about 20 pounds of muscle and fat. I was so devistated when my doctor told me that i could not play basketball anymore. So i started modeling, something that my body was never shaped for doing- but now it is. I love to model but i'd much rather be shooting hoops. having lupus has changed my life greatly. I don't worry about anything and i appreciate life and health like never before. It has made be a more outgoing person. The only thing that slows me down is my Raynauds disease.( a disease that stops the blood flow in my fingers and feet when exposed to extreme cold) I hate it with the passion but i deal with it and keep on goi! ng, and that is what we all are doing right?"

"Hi -- I was diagnosed with Lupus in 1996. It's been up and down since then. For me, the hardest thing was to learn to listen to my body. I had ignored my body for so long, as I didn't want to be thought of as a hypochondriac. I couldn't bear to be thought of as a whiney, complaining person, so I kept quiet and got by the best I could. Once the pain got so bad that I couldn't work or sleep, I went to the doctor and was fortunate to have an enlightened one. She sent me to an amazing rheumatologist who has helped me a great deal. She has made me realize that I must pay attention to what I'm feeling. Lupus is such a strange disease -- how your body's defense system turns against you. It's like a coup d'etat. I get very indignant when I think about it!"

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