Lupus Site - a guide for lupus patients and their families



Personal Stories 4


Personal stories 1
Personal stories 2
Personal stories 3
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Personal stories 6

"My name is Kim Owen and I'm 18 years old. About three months ago I was diagnosed with SLE. I went to the doctors after I collapsed at college, but it was the proverbial last straw. For months I had been feeling tired most of the time but I had most of symptoms of flu - high temperature, achy joints, painful chest, feeling cold most of the time and an aversion to sunlight - so my family and I went overly worried.
Before the doctor told me that there was a chance that I could have this disease, I had never heard of it, let alone know how severe it could be. After then, though, I made up for my ignorance. I surfed the net and looked in libraries, found out all about the disease and the treatments and the like. And I happened upon this site.
Since then, the most important thing in my life has been my family and the few close friends that I have told. I notified the college that I would be back in within a week, but that turned into two, due to tests. I was later, on the 7th of February, informed that, yes, I did have the disease.
I had left it until then to tell my boyfriend, Andy. He was upset and disbelieving, but since that day we have become closer. On Valentines Day he took me for a romantic meal, in a posh resturant in town. After dinner, he proposed. I said yes, and we are currently trying to plan a wedding for the 12th of December - my birthday. Trying is the most important word in that sentence, as my mother and sisters are trying to plan it for me as they don't want me to become too tired or stressed as this is known to course the flares that I have read so much about.
All the other people here who have posted are all older than I, but I know that this disease hits mainly at childbearing age. But we all go through the same feelings and the same distressing times, even though we all have our own way of dealing with things. I just wish that there was more that the doctors could do for me - for all of us really. To find a cure would be a lot to ask for, but I think that if the right amount of time and money is spent than one day there will be no need for liver transplants and the like.
I just thought that I would share my story, to prove to other teens like myself that life does go on, and there is no need to stop living a normal and healthy life."

"I have felt pain and releaf hearing everyones storys. My name is Debbie I am 44 years old married and we have a 17 tear old son his name is Luke. I was diagnosed with lupus (sle) and autoimmune hepatitis about a year ago. I went to the hospital E.R. I couldn't even pull my own pant down. That happened two times, my doctor just kept doing blood work. My liver count was really high it was never really normal again. One day I asked my Dr. what he thought I had and what he was going to do about finding out? His reply was compared to how I felt in the hospital and I feel now... what do I want? I told him I knew something was wrong and I would find out by my self. The thing I also found out was that I had all of this comming on for at least 14 years. Yes it is a relief knowing I am not a nut case, or at least not totaly. When our son was a baby I would be in so much pain in my back I couldn't even turn over in bed I would pull my self over with the mattress. I would try to pick my baby up and couldn't even lift him with my hands, I would put my elbows under his pits ond lift him. I had a lot of pain in my tummy and thought it was my female organs, so I had a hysterectomy. God is my strength. My husband is one of my many blessings."

"I recently have been diagnosed with lupus in September/01 and have had symptoms since I was 18 and about to give birth to my daughter.I've been fighting for 6 years and just turned 25 on valentines day,and celebrated an 7year anniversary. I've been very lucky my husband has been there for me .He is the one who helped me find your web site.I thank god every day for a good day . I 'M relived to know I'm not alone and going insane.Sometimes I don't want my child to see me like this and don't know how to get the extra support I need. My mother was just diagnosed with stomach cancer and I'm her support for everything. Chemo visits ,doctors appt, and moral support. My husband helps me as much as he can.I can't even drive or walk to the liquor store to get my little one an ice cream. This has been so hard. I can't stand the sun it hurts my eye and gives me a migrane.I drive maybe 3 to 5 times a month. I take my mom if I can for her chemo if not my ! husband drives.I have been waiting for an answer from social security disability for an answer and hop to get it soon. I can' t do this alone. I have bills to pay and I never thought I'd consider doing this now to file so young but if I'm not able to control my flares and have to ware hand braces to keep my hands for curling and staying in use I don't know what else to do . I have had finger splints made for my fingers because they are deforming at the knuckle to the finger tip and hyper extend to hand. I just want to say that I'm glad for people such as your self that keep us informed and that you share your story. I applaud you and keep your head up your not alone and if I can do deal with my mother illness and mine I know you can because we are strong even by sharing or reading this to heal our souls your the value in our lives and our homes.With much respect to Joanne and whom ever reads this message. I live in California and you can reach me at thank you."

" I was finally, officially, diagnosed with systemic lupus erythematosus in 1970 just before I turned 32 years of age. Married and the mother of three children found me relieved to have a diagnosis that fit how I had been feeling. Also, grateful for the prednisone that took the pain away. My rheumatologist had interned at a hospital where they were studying lupus. He is still my rheumatologist. We have had our ups and downs over the past 32 years but we have both survived. I was 10 years old and hospitalized for lumbar pneumonia in January. In April, I then experienced a rash that was diagnosed as scarlet fever. I have had joint pain, swollen glands, tiredness (my mother said I was too young to be tired). But in all sincerity, in 1948 who knew. After I was married and I started seeing a new GP who had a patient with lupus, but did not diagnose me. I suppose that over the next 50 years I have acquired enough information to fill a book. Here I am 63, and still breathing. I take Celebrex for the OA, Paxil for depression, Darvocet-N-100 and Neurontin for pain, and a mineral without iron supplement. Also, one Bayer aspirin, daily, since I have had a quadruple bypass." Carol

"I live in southern California and was diagnosed with SLE approx. 8 years ago. Same old story, feeling terrible so you go to the doctor and are told it's this and that or worse when you are told you probably need a psychiatrist because they can find nothing wrong with you. Finally, one astute MD noticed that I had a bad case of shingles on my leg and off to the rheumatologist I went. I have really been very lucky, as of this point I have had no kidney involvement, I have had pericarditis once and my thyroid is virtually non functional. I have some fatigue and sore joints. My biggest problem probably is my anemia and leukopenia for which I have had a bone marrow biopsy (ouch). I continue to work part time as a perinatal nurse and enjoy my family, which includes six children who are all beginning to leave the nest." Joanne

"I was diagnosed with lupus when I was 12 years old. I have experienced a lot of pain and i have been through the ulcers, medication, shingles,arthiritis, predinsone( as well as other medicines) the weight gain and the fatigue. Theres more but I try to forget. I am e-mailing you to let you know that despite all the pain and trials I have been through my short lifetime, I am still trying my best to get through it. I know that I am not alone in this world. My family and friends encourage me to keep doing well in school ( although I miss time often) This is my senior year and for the first marking period grades I got 4 A's and 3 B's. I am interested in the health care field , why not be :) I plan to become an RN, or Nurse practitioner. Right now i am taking an LPN class at New Horizons Regional Education Center. And I love it. I plan to study heriditar! y disorders like lupus. This is one site, among many that I just found and i love it. I plan to visit often. Thanx for making me feel welcome." Ashley

"I am 43 years old, have four children aged 13-20 yrs. and a wonderful husband. The Lupus symptoms have been around for some years but I had never heard of this disease so didn't know to get tests done. When I have gone to doctors about the pain and stiffness in my hands, it was put down to arthritus. A couple years back I went to a doctor after experiencing such confusion and 'brain fog', I got lost in our local city - it was a scary thing!! I had blood tests done, he put it down to ross river fever, depression, stress. (also had aching joints and headaches for a while) A lot of things make sense now that I have found this lupus site and read about the symptoms that can be attributed to lupus. I don't like what I have but it is good to know what it is. I am tired, exhausted most days and need to rest every avo and to bed early every night. I thought this was to do with the depression I have had for many years (have been on anti-depressants for 8 years) but it is not only due to depression. I am afraid of getting major flare ups - chronic pain and organ troubles but I pray that God will get me through in His strength if it comes to that. The pain at the moment is bearable although consistent, it hurts to turn off stubborn taps, pull windows closed, open cans, etc etc. I used to love to write letters but now I have to take breaks - I love to talk on the phone, too but even that hurts the hands if in the one position for a while. Such pain and stiffness, but as I said, bearable - I am only taking panadol occassionally, I guess I don't want to be addicted to major pain killers yet. Does that make sense to anyone out there? If anyone would like to write to me, my email address is I am looking at stepping back from the work I have been doing - mostly voluntary - and encouraging other able-bodied people to help. I can still pray and plan to do more of that this year. God bless." Julie

"i just discovered it today.I want to share my story with you all and i hope i can have more information to help myself because i have suffered alot and i want to live anormal life.I am now 33 and was diagnosed with lupus 13 years ago I live in Amman Jordan and i think i am lucky enough to only have mild lupus I had an attac 6 years ago and since then only the usual flares which are accompanied by jont pain, inflammation and the neverending depressions.I am married and have two beautiful children 6and5.Ever since the last attack i have been taking prednisone regularly and on high doses 35,25.and i can never go under 12.5. My body seems to have become addicted to cortisone.Now i take 20mgs as well as plaquenil,and any antiinflammatory drug available on the shelf , last one was celebrex but i stopped it because i was afraid of its side-effects.I also discovered that i have osteoporosis three years ago, no one told me to take calcium supplements with cortisone ,anyway i am being treated for that too and feel fine.My only problem is with the steroid treatment how can i reduce the dose without any problems? I tried immuran but my doctor is scared i might have problems with my wbcs.I have developed a sort of pleuritis thing recently ,to be exact 2 months ago and that is why my doctor increased the dose.I am only worried about the side effects, i have developed atrophy in my legs and i wonder what next. We do not have support groups in my country i am trying to establish one soon.I sometimes feel that our doctors lack enough education and that is why i think i was not treated properly, plus a husband who is unfortunately tired of the continuous complaints.I am in this all alone I want to help those less fortunate enough to know about their disease and i would really appreciate any suggestions for my queries. Thanks for your attention.Here's my e-mail for any suggestions"

"My name is Deborah, I am 31yrs old and live in Ireland. I am married to Brian for 9 yrs, and we have two lovely children, Kurt and Kirsty, aged 7 and 9. I was diagnosed with SLE one year ago, but like many of you I feel I may have had it for much longer. In the weeks prior to being diagnosed ( july-august of 2000) I was very debilitated, it started out with pain and stiffness in my shoulders wrists and basically all my joints. It then got to the stage where I couldn't walk or sleep because i was in so much pain. my G.P said that I had a virus, but I knew it was much worse than this because only I knew the extent of the pain.I returned to my G.P for the second time and she still insisted it was a virus and would go away, but I asked her if there was a possibility it might be rheumatoid arthritis, and she totally dismissed this. Eventually I was admitted to hospital, where several tests were carried out and I was diagnosed with rheum. arthritis. I was put on a course of steroids, arthrotec, painkillers, pariet-( to prevent me from getting a tummy ulcer). I was then referred to a rheumatolagist and he did more tests and found out that I had in fact SLE. The symptoms I have had in the past have been severe joint pain, pain in my rib cage all the time, a prolonged sore throat, hair loss and tiredness. Presently the joint pain has diminished since I started Plaquenil 10 months ago, I still have the hair loss and am currently wearing a wig, but overall I am alot better than I was 11 months ago, even though I do feel down a lot, I was once considered to be a pretty lady and with all I've been through in the past year, I look in the mirror and feel I've turned into an ogre, but when I'm feeling low like this I look at my two children and my husband who has been absolutely brilliant and I'm glad that I'm still here. I think its great to have this page to be able to read about other people with Lupus and what they have been through, and hope all of you have a long and happy life."

" My name is Nallely, I am 19 years old and was diagnosed with lupus in Jan.of 2001. It all started when the bones in my hands started hurting very bad to the point where I could'nt brush my hair. I started becoming very week and tired. I also got ulcers in my mouth. At first I thought it was noyhing and that I would get better in no time, but I was wrong. I was a 12th grader in High School which was supposed to be one of my best years, but it was not. I started missing a lot of school because I did'nt have the energy to get up and go to school. I went to a doctor who told me I was only anemic and started taking a lot of iron pills which did not work for me. I got to a point where I could barely walk because I was sick. I then went to the hospital to get checked. I was ther for about 15 days where I got a lot of test done and a blood transfer.. This is when I was told I had lupus. I was overload! ed with IV and had my feet and back swollen to the point where I could not walk. I thought that the swelling would go away by itself , but it did'nt. This is was caused my second flare. I was back in the hospital because I could not breath. This time I was injected with something to take the water out. I was extremely determined to get out of the hospital as soon as possible but the doctors did not know how to treat me and I got worse. I was then transferred to another hospital where I got much better, thanks to all of those doctors and nurses at UCLA Harbor. iI lost about 40 pounds and lost all of my hair because I went through quemo. I cried so much because I was so ugly now. My skin wsa all burned also because of quemo. and I got the most ugly strech marks all over my legs and stomach. I prayed a lot to my god so I could get through this and so far I have. I was on a high dosage of prednisone and now it is cutting down. I honestly don't have a lot of faith in medication. I ! started to drik a juice called NONI which helped me a lot because it is natura. I also started taking Nutrilite vitamins which helped me even more . I have been out of the hospital for about 6 months ago and I am doing so going , I am really thankful. I have read a lot of the stories and I felt like crying because I want to share my wellness with all of the lupies. I really hope that I can help if you think you can trust what I am writting and taking. I never stopped taking my medication, I only added some natural vitamins that have helped me a lot. Please write to me at if you need a friend or are interested in learning more about what I used to get better and feel better. God Bless you all."

""Hello folks!" My name is Melane and I am 26 years old and was diagnosed with Lupus SLE when I was 13 years old. I had 11 years with no problems and thought it was a miss diagnosis not wanting to live wearing sun tan lotion and miss laying in the sun with friends. Well 2 years ago my symptoms of joint pain started again. So I went to the doctor for a check up and he stated you are fine. Well I was not the pain over that year kept getting worse and worse I could barely go to work or do my job. Went to the doctor again gave me some pills no lab work and sent me on my way. Well my knee this year 2001 had so much fluid build up I went in and thats when the doctor a( different one) ran lab work and found out my blood levels were so elevated he put me on Predinisone now for 2 months I feel like a new person minus the tiredness but no pain. Thank god. I forgot to say that the doctor did try getting me off the pills but it didn't work the pain came back so i am back on it no! ! w till my next doctor visit. The we will see what happens. The only thing bad in Minnesota is the insurance company's. My husband was layed off from his job and so we lost our medical and in Minnesota to get insurance threw the state you have to go 4 months with no insurance so I have 4 months plus back 3 months in medical bill to pay and at the best time when I'm having trouble. Nice state I live in!! I have a daughter who is 6 years old and I pray she does not get this disease the say she won't but I don't know how they can say this? Email if you would like to talk."

"My name is Robbie Fetters, I am from Macon, Georgia and was diagnosed with Lupus over a year ago. Before that I was diagnosed with Rheumatoid Arthritis. I just got realeased from the hospital today, July 4th. I have Lupus Pnuemonitis and Chronic Interstitial Lung Disease. They gave me a three day 1000mg. of Solu Medrol Iv for three consecutive days. I am on a nebulizer four times a day at home. I am currently under the care of the most wonderful Rheumatologist and Pulmonary Specialist. I also have Osteonecrosis in both my ankles. I am a General Sales Manager of three radio stations but have had to be out of work since June 12 and was just told by my two docs that I must be out of work at least another one month to three months and maybe forever. I love working and this is very hard for me but my pulmonary doc has told me that the lung involvment is very serious and that my diffusion is 42 and is should be 80. He says we have to treat it very aggressively right now and that he cannot assure me that it will be a favorable outcome. I am a very positive upbeat person and I know that with a positive attitude and my faith in God that alot can be overcome. I will not ever give up the fight and I will strive to get back to work. I am 48 years old have a wonderful husband of two years, two children ages 25 (a nursing student at Emory University in Atlanta) and a 19 year old married son. Two wonderful step-children ages 9 and 5. My Rheumatologist has become a very dear friend, she prays with me and is an awesome person. I am so fortunate because I talk to people everyday who do not have open, compassionate, knowledgeable doctors. I also have a fabulous primary care physician who hooked me up with all my great specialist. I will say the lung involvment has taken a toll. In the past I have had severe joint pain and muscle pain and eye problems but my major organs were not affected. My liver enzymes are always out of whack and my breathing is very labored especially with any exertion. The one thing I don't want to project is doom and gloom though. God has brought me through alot of things in my life and this too is one more thing. Whatever the outcome I am a truly blessed person in so many ways. I wish for everyone out there suffering with Lupus peace and rest."

"I was diagnosed with SLE in 1982 at the age of 21 after spending several days sunbathing and developing flu-like symptoms and a body rash including the butterfly rash. I saw my GP immediately and he diagnosed me with SLE at that time, so I didn't have to go through years of struggling with a diagnosis. I'm thankful. I was hospitalized with a severe lupus flare with painful joints, enlarged spleen, hepatitis, high fever, extremely high white count. I had several flares over the next few years and was hospitalized several times. In 1985, my health began to stabilize. Except for fatigue and joint pain, I've had no major flare-ups since. In 1990, I developed a throid problem and have taken medication for it since then. In 1997 and 1998 I had two miscarriages. We've given up on pregnancies since I had many complications with the last miscarriage however, we plan to adopt, so I feel very positive about it. I take good care of myself and get plenty of sleep and rest. It's been 17 years since I was diagnosed I'm now 38 and I have a lot to be thankful for. Lupus can be tough but so can life without Lupus. I have a wonderful husband, family and friends. One question, "Does anyone out there have severe allergies and/or has anyone been on allergy shots?" If so, please share your experiences."

"Hello. My name is Stacy Myers. I am 17 years old. I was diagnosed Dec.13, 1996. I had been having syptoms since Oct. of that year, just shortly after my 14th birthday. I had only mild joint pain, and I was doing well for quite sometime, but then in the fall of 1998 I had such severe spinal pain that I was taken out of school for two months. During this time I became greatly depressed. At one point I was suicidal. I didn't want to talk with my friends or family about it for fear of worrying or upseting them, but then one day God reached out to me. I was watching tv and a well known performer began talking about how his sister had just died from lupus, and he had created a lupus fund in her name. He said that he hoped that no family would ever have to suffer the loss that he and his family had. It completely changed my attitude. Thanks to my new mental outlook I began feeling much better. In early December I went to Columbus OH to Children's Hospital to see a "very prominent" rheumetologist, who ended up accusing me and my mother (who is an RN) of not knowing the difference between a lupus rash and acne, and then incinuated that I was just trying to get out of school. I am a very dilligent student and have never once been off of the honor roll. He then re-did the lupus testst saying that there was the possibility that I had been misdiagnosed. I left with new hope. Later, Dec. 13, 1999, His office called and said that all of the lupus test had come back negative. I had this ray of light in front of me and I could not force myself to believe that there was the chance that it wasn't true. My mom tried to tell me that it may just be in remission, but I wouldn't hear of it. The dr. finally called about a week later to tell me that I did have lupus, it was just in remission, and that I had something else on top of it. He ordered and MRI in Feb., 1999, and to date he still has not called to give us results, but mom called and had a lab technician tell her the results, which showed nothing. I feel that it had gone into remission before he ran the tests, but since I don't have a ph.d. what I think doesn't matter. At any rate, I have been doing so much better. I have decided to write a book about being a teen with lupus, in the hopes that it may help others. I hope to include the stories of other teens in it as well. I have found in my life that you can take nothing for granted. Life is a gift that should be enjoyed to the fullest, and you should never be afraid of anything, because fear is a waste of energy. Don't put up with people who don't have your best interest at heart. And never forget to smile. It can brighten up anyones day and most people are eager to return the favor. Take care everyone, and if anyone would like to talk please e-mail me at Love ya! Stacy :)"

"I just found this "site" and I'm touched by all the stories that are printed. I do not have Lupus and I do hope that I never will get it. My heart goes out to all of you and I pray to God to keep you well and to help you and your loved ones go through the battle of this illness with love, understanding, support and courage. 10 days ago, I lost my nephew to lupus. Neither myself nor our whole family knew what this desease was all about. My nephew even though he had been diagnosed with lupus at age 16, he never did led on to any family member of his suffering. His kidneys failed him 4 years ago and was on dialysis 3 times a week. Approximately 7 weeks ago he was admitted in the hospital with severe abdominal pains. George underwent numerous tests and 2 weeks before he died he was scheduled for heart surgery. He gave the impression to all family members that this surgery will help him become a new man and also place him in the list for kidney transplant. The operation was performed and unfortunately, my George never came out of the operation room. I cannot forgive myself for not knowing about this desease. I need to know how it is contacted and what symptoms to look for should any other family member or myself ever get this. George's sister has very bad arthritis, does this mean she has it too? Please help me understand this. George had been given 2 weeks to live and yet to his last day in this world, he was with a smile, a joke and such an enthusiasm for life and future. I have never known such a brave and positive person reading your stories, I see that all of you are as brave and positive as he was. From the bottom of my heart, I wish you well and may God be with you. / Ifigenia"

"I'm glad I found this site. After listening to myself at the doctors office recently, I thought myself that I must be crazy. How can someone feel that bad and have that many problems at once. I am a nurse and tend to downplay most symptoms. The fatigue and joint pain are the worst. I used to be so active, but now an hour after getting up, I'm ready for a nap. I was told over a year ago that my lab work came back "borderline". I was told not to worry about it. I was a good patient. I didn't worry about it until I was almost non-functioning. My husband looked at me one day and asked, "What's the matter with you?" I made another doctor appt. that day. Why is it that so many of us are treated as if we are crazy? Anyway, I'm glad I found others who understand. Thank-you. RG"

"I am a college student who was in search for information for my upcoming paper. My mother suffers from Lupus and I know all of her struggles she goes through every day. There is not a day that goes by though, that she doesn't continue to do her very best in all that she does. I guess reading some of these stories puts a whole new meaning in the eyes of others. Keep fighting and have faith. :-)"

"Hello, i have had lupus for 7 years and i always have had a bad rash people look at me very funny because it is very noticable on my face and arms i get embrassed and i shy away from people because of it, i have tried makeup to cover it up but it seems to make it look worse. I sleep to much is what my family says get out and do something you might feel better ya right i just feel more tired. and as for my children i get very depressed in the summer because i can't do what most mom's do like go out in the sun and play with them . i am very glad that there is other people to talk with about my problems. people how can relate thanks"

"I am a 44 year old male and I started this adventure with Thrombocytopenia, had my spleen removed, and have extreme joint pain, possibly RA, butterfly face rash, extreme muscle spasms, and have been refractory to most medications my Rheumatologist has tried. I have experienced adverse drug reactions since this started. I took one dose of penicillin after dental work, and had an anaphylactic reaction, have had penicillin many times in the past. My Rheumatologist started a regimen of Imuran for autoimmune hepatitis in November 99, and I ended up in the hospital for a week with drug fever. I am experiencing allergic reactions to all medications that my Rheumatologist is prescribing. Since the hospitalization in November I have been experiencing cycles of high fever 105+ lasting about 7 days, then "cooling off" for 2 days, then repeating the cycle. My Rheumatologist says she doesn't know whats causing the fever and doesn't know how to treat it! They suspect it may be ! "my" disease, which to this date has not been diagnosed. Possibly Lupus, possibly Still's disease(junvenile form of RA). My Hematologist disagrees with the Rheumatologist and says I don't have Lupus and never will because you must have the genetic markers for get the disease, which he claims through blood tests that I do not possess the genetic makeup. This can be so frustrating, to here two specialists with such contradicting conclusions. My history is as follows I am a printer by trade, and bath in products based with Benzenes and Xylenes, I had many days where I would get so sick from the chemical exposure, flu like symptoms, headaches, nausea and after leaving the shop for the day my symptoms would subside, only to surface again the next day, after working with these chemicals for a couple of hours. My Rheumatologist says the potential for chemical exposure to trigger this disease is probable. This exposure was over a 10 year period of time, and my symptoms started about a year before I sought a medical specialist. I had been in and out of my GP office many times with the flu like symptoms and nose bleeds, only to be told I must be getting old and my blood must be thinning and I bruise easily. Subsequently, my story starts with the Thrombocytopenia as started in my story. Primarily the incidence for Lupus diagnosis is by far more common in females than in males, I am looking for information on chemically induced Lupus, or Chemical triggers that can cause Lupus. Are there any guys or gals out there with a similar story? My research has just begun, and am gratefull for any information that anyone can post on this forum that would help educate myself and any others that may be interested. Thanks to all of you."

"I myself do not suffer from Lupus....but my best friend and roommate does. I always new it was hard for her...but never really knew how hard as she always kept a brave face and enjoyed life like any of the rest of us.....until recently that is. Now I am terrified for her. Just before Christmas she spent a while in hospital.....I visited her almost everyday but it was so upsetting.This is why I am writing this.....I suppose to get it off my mind. She is only 20 and was lying in that hospital bed barely able to move and certainly unable to make conversation to us. Nothing that came out of her mouth made sense to us....and I know her very well. I am still not quite sure whether she knows what she said in that hospital...but some of the things said were just so out of line. Doctors said it was the steroid therapy that she was on...but she refused to believe them. Now just 2 weeks later she is perfectly fine and acts normal around everyone except myself and her parents. I am not sure if this makes sense to anyone...but it helps me to say it all..... This girl is one of my very best friends and without her I don't think I could survive....We have been through alot together and I just hope that she gets better as she has so much going for her and the rest of her life ahead of her. Now I realise what a hard time she has been hiding all these years but up to this she seemed so healthy....I just wish for her to feel better soon so we can once again enjoy ourselves.......and I wish all who come to this site the very best for the years to come. Sorry if this did not make sense...:) "

"I am a 37 yr. old wife and mom. I was diagnosed with lupus about 1 1/2 yrs. ago, and, like many of you, it was a loooong process to finally get diagnosed. We're a military family, and I wish I had a nickel for every time I was told it was either a virus or stress-no matter what the symptoms. Finally, I ended up at Johns Hopkins, and the diagnosis came pretty quickly, especially when I ended up with scleritis/iritis of my eyes. I have been doing much better since this last june, only on Plaquenil, but when the disease rears it's ugly head, it can cause the joint pain, dizziness, Sjogren's syndrome(that's daily), chest pain, fatique, and the burning sensation with or without redness. As a matter of fact, I don't get the traditional lupus rash, though during flares, I'll look like I am blushing sometimes. There are the long litany of other symptoms, and I am not in remission, but life has been a heap better. I'd like to pen-pal with other women in the same boat. Pep-talk each other, problem solve, and empathize. Anyone out there want to talk? Lori: Hope to hear from you."

"First I would like to say thank you to all of those who have provided such information about a disease I know nothing about. My eyes have been opened, and I can not adequately express my gratitude.

I am a 20 year old female in college. I am searching the internet at 3 am because I am suffering from insomnia, which mysteriously reappeared in my life a week ago, when I started taking oral contraceptives again. I had been on the pill for three years, after doctors failed to find any other method of treatment for my migraines. I began getting severe migraines in high school (1 every 2 weeks) after being date raped. Over the last four years, every since the rape, I have experienced periods of depression, asthma, allergies, fatique, frequent migraines, hip and knee pain. My doctors have always diagnosed it as depression and post traumatic stress syndrome, but now I have hope. You see, the last seven days of my life have been an emotional roller coaster coupled with fatigue, rashes, several strange sores/moles, and mental instability. I thought I was "relapsing" into depression, as a result of the rape. I have been quite disappointed in myself, as I thought I had dealt with the incident in a positive manner. Now that I have searched this website, I feel that my symptoms may have something to do with the pill, and not my psyche. The relief is enormous. Although reading about lupus has put a new fear in me, I hear the sound of hope and positive thinking in many of your messages. I guess I would like to say thank you again. I wish you all well and better health."




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