Hi, my name is Nancy. I have had Lupus for over 21 years. It started as Discoid Lupus so we thought untill I misscarried at 7 1/2 months, 3 times. That is when they decided to do extensive blood testing. And that is when I was diagnosed with SLE. It went down hill from there. I have had both hips replaced, caused by Avascular narcrosis. Lack of blood and oxygen to the bone. Double bypass to the bowel. All 3 major arteries to the bowel were blood clotted. Now on blood thinners. Lupus attacked my gall bladder, had to have it out.
I worked for the Ministry of Attorney General, Provincial Courts and now on Long Term Disability.
I am in remission at this moment and hope to stay there for a long time. I also have Fibromyalgia, Raynauds and Alopecia Areata.

Hi my name is Andrea I am 53 years old and have had Lupus since the age of 14. I had Pericarditis at age 17 and arthritis since 16. I developed kidney failure at age 19. I was on Cytoxin for two years for my kidney's and had a child at age 34 (what luck). I developed Gout in 1996 and after taking Alprinal I developed Stevens Johns Syndrome. I dragged myself back to college when I was 33 and recieved my teaching degree. I taught for 7 years before I had a heart attack. I had a Pericardictomy and double bi-pass four years ago. My kidney's are so bad that the Gout has detroyed the joints in my hands, feet and ankles. I am being evaluated for a kidney transplant. I am even going bald. I also have thyriod disease. I still say it could be worse and I have more hope than anyone I know...but I must admit I cry at least 5 times a day...I don't feel sorry for myself because I still feel blessed for somethings.

Hi. My name is Melissa. I am 38 years old and have been sick most of my life. I suffered from horrible allergies & asthma from age 6 on. I had so many health issues as a child that I dont really know what it feels like to be healthy. At 25 I was diagnosed with malignant melanoma cancer after a friend died from it. That was the begining of an emotional journey which has changed my life tremedously. I had several scare's of a re-occurance since then. At 31 a mass was found in my chest. Thought to have been melanoma. I had open chest surgery (the same as open heart) to remove a large mass which was a thymoma (common with people who have auto-immune disease's). The surgery was a very difficult recovery and Im pretty sure it triggered the Lupus, which was just hiding its ugly head for many years. I got deathly ill after my surgery. Finally, after seeing many different doctors, I found a rheumy who diagnosed me with APS, Lupus, Raynauds and celiac disease (I found out I had that years before). That was 5 years ago. I was fortunate to have a miracle baby. My pregnancy stunk. But he is the love of my life (along with my husband and 30 animals :)Im on plaquenil, baby aspirin, a heart racing drug and some other meds. I am so thankful that the medication works for me. I still get flares but at least I can function now.

Hi my name is Peta I am 29 and was diagnosed with SLE 2 years ago. I also have a 4 year old son who was diagnosed with Autism at 2 1/2. My life is full of doctors app between me and the little one. I am on Plaquenil, Aspirin and Methotrexate fun fun fun.
Life is full of fun and games you just have to get on with it. ;)

Hiya,
My name is Ann i am 43 was Dx with SLE 17 mths ago. Iam on Asprin Plaquenil, Simvastatin,esmeprazole,celebrex, frolic acid, predisolone.

this lupus is stopping my life people look at me with this pity look i hate that or they say lupus whats that? never heard of it like your making stuff up.

My lupus flares diasble me the pain is that bad i just wish to go to sleep and never wake up- but i have a great hubby who is my cheerleader and my son who is my life, one smile or hug from him makes me carry on.

My name is Kim and I am a Gulf War Vet, 36 years old, had a son at 34 and was diagnosed with SLE, polycythemia vera, myasthenia gravis, raynaurd's, sjorgern's and scleroderma is also suspected, hope that one gets ruled out. I have a degree in sociology and am currently a stay at home mom. I am all natural and not on any meds at this time. The natural route is a difficult one full of many trials and errors, but I think that my current regime is working pretty well since my inflammation levels are down and my symptoms fading.

Hello my name is Debz, I am 39 and from Aberdeen Scotland. I have had SLE for nearly 12 years, however i have had symptoms much longer since my teens.My SLE effects ,my joints,muscles,kidneys and skin.I also have Fibromyalgia, Raynauds , Alopecia Areata, Asthma,diabetes and endometriosis. I also lost a baby due to my SLE at 16 weeks. I have been advised to have no more. I am lucky to have 2 teenage boys aged nearly 18 and 15. I do not work anymore due to my disabilities but I used to be nurse, and I am also a qualified reflexoligist.

Hi, I'm Mickey. I was diagnosed last july by they haematologist at St Thomas' in London by chance. I saw her to get permission for another op as I was diagnosed with APS a few years ago and I was in the middle of what I thought was either an Arthritis flare up. As she put it, I was quite clearly in a lot of pain and that needed sorting first. Then followed SLE diagnosis. When I told my GP is wasn't surprised either, apparently he had tested me for it 2 years before that! LOL Oh well. Just another one on the list as I also have RSD (Reflex Sympathetic Dystrophy). I take planquenil, warfarin, morphine sulphate tablets and less often since the planequenil I also take oramorph. Although I take thyroxine (underactive) this does conrol that problem, but the mix of meds does mean I have to take tablets for acid refux and anti-spadmodics for IBS and diverticula. It could be worse though. My symptoms have vastly improved since I started taking planquenil. Although now single I have 3 lovely boys and now a beautiful granddaughter (born August), for them I am blessed for I did have many miscarriages but still managed 3 kids, much more than some.

Hi I'm Jennie. I was DX twenty years ago this December just gone, while I was living in the States and was in my twenties. My husband at the time left me one month later, he could not cope with me being sick. Even though I have not been able to work for several years apart from little part time stuff, I have managed to bring up my son on my own. He will be 18 this year, and he is my heart and my treasure.

I was due to get married in June, but I am having huge problems with mobility and pain in my hips, and I refuse to walk down the aisle with crutches, so we have postponed things for a few months.

My absolute passion is Harley Davison motorcycles, I have a trike which I can't ride at the moment, too painful, but I like to go on the back, and recently managed a 3,000 mile round trip through Europe.

Hi everyone!

hello everyone, my name is lynn,37 years old right now.excuse my typing please.i was diagnosed with discoid lupus feb. 2008 and SLE nov.2008.i was working as a cna for many years until march 2008 when i just couldn't function one day.made an appt. to see my doctor and told him all the problems i was having. he did some labs and told me that i had inflammation and sent me to a rhuematologist that i had to wait a month to see.she did more test and asked a lot of questions while sneezing and blowing her nose all over me. she said it was allergies. so in the mean time she's not listening to me because i'm repeating myself and she coughing and sneezing and i'm thinking wow, what a waste of time,gas, and the little energy i did have.never went back there and didnt care what she thought,this is in april.in may i went to get my ears checked for all the ringing and dizziness.all was normal.was referred to a neurologist that sent me to physical therapy for neck pain and dizziness.i gave it a try.the neck massages were great but what about the hip and back pain? he ended up giving me cotisone shots in the neck and wanted me to go back to therapy.enough is enough,this isnt going anywhere 6months of crap.saw a different rheumatolgist and got a new doctor that listened to me in october.gave me anxiety med and i tried prednisone for a month and im still taking naproxen twice a day,not helping.still waiting to try plaquenil.in the mean time i have 2 girls thats gone away to college 19 and 18, and 2 boys 11 and 14.i try not to worry them with my problems because i want them to be happy and enjoy their health, that's why i'm bugging you guys.thanks for all you support.

Hi... My name is Jane. I am 56 years old an I have had lupus since the age of 10. It would be hard to find a bodily system of mine that is not damaged or defunct or a teatment I have not had.
I am optimistic and up beat most of the time. I am grateful to still be alive. I trust my Rheumy to keep me on the planet till a cure is available. I am newly single. I have 2 dogs and a cat. I have a great group of friends and a supportive family. I have a married son and a year old grandson! I love to read...Oh! and I'm a lesbian. I think that about does it.
To find out more about my SLE go to my profile

Hello all. My name is Kyle Anne and I was dx-ed with Lupus about 10 years ago. I'm divorced and have two grown boy/men. One is 38 and one is 26. My 26 year old has Asperger's Disorder, which we didn't find out until he was grown. He's at the higher end of the disorder, but feels really alone a lot. I have three grandchildren from my first son. Twins, one boy, one girl ... ages 8. Plus a girl who just turned 2.

I have a pretty good group of doctors who I see for my various problems. They all carbon copy their records for the other doctors ... so everyone's up-to-date on things. I was taking methotrexate shots which were working wonderfully for the Lupus pain. However, I ended up getting ulcers in my mouth and the rheumy won't let me take any more shots until this clears up. It's been about a month now. I've had two doses of Nyastin, with no luck. I've had two doses of medicine for Thrush, with no luck. My Neurontin has been raised by 500 mgs. 4 times per day and I will finish a tapering dose of prednisone tomorrow ... ummm, I mean today. My mouth has gotten worse. I went to eat plain old oatmeal tonight and, after two bites, couldn't eat anymore. I'm wondering if I need to go on Ensure until this clears up. Meanwhile, all the wonderful aches and pains from the Lupus are in full force. I've been in a flare since Thanksgiving.

Tomorrow, I go to see an ear, nose and throat specialist. I do have Sjogren's Disorder, which is probably making everything worse, but I am to the point where I just want to let my poor ole tongue hang out of my mouth. Plus, I've developed more ulcers on my gums and the inside of my cheeks. The top of my mouth is sore too.

Five years ago I had my right kidney removed due to cancer. So far things have been okay with my other kidney. There is a small cyst in it, which the Urologist says not to worry about. What's he talking about? The tumor in my right kidney started out as a small cyst too. Oh well.

Tomorrow, I get some fasting bloodwork done too. My rheumatologist thinks I have either an Iron deficiancy, neuropathy of the mouth or Lupus of the mouth. Sounds like a whole lotta fun, whatever it is.

I'd get into some of the other conditions I have along with the SLE, but ... well, it gets tiresome and I'm sure you all know how that goes.

Anyway, glad to be here and sorry about all my whining.
peace and love ... Kyle Anne

I'm a Business adviser, have 1 sister with MS, my son he has diabetes type (1) my mom died 2000 complications from Myasthenia Gravis and one cousin died last year, she had MS for 14 years. I've been to (1) neurologist and (2) RU's. After $6,000 of blood tests, an MRI and EMG I've been told its Fibromyalgiaâ??I recently lost my apartment and had to move into a cousin's house which is one of the worst dirty dust bowls I've ever seen. Good news, I just got a great job and will be able to get a new place in the next few weeks. Since I moved in with my cousin my face is flush redâ??burning, itching with blotches. I use a hydrocortisone cream along with Neutrogena face cream without alcohol and a Disney product to assist with the severe flaking on the sides of my mouth and the corners of my eyes by my nose. I can't describe how bad the flaking can get at times, but now with the burning skin it really hurts. Yes, I do have loss of skin pigmentationâ?? Vitaligo which started 7 years ago and got bad the past couple of years. This along with joint pain throughout my body. I just bought Zyrtec today with Vitamin B complex to add to my two a day GNC mega men. Yes, I am a man-- *smile* Any suggestions . . . Thank you!

I just turned 57, was dx with SLE in 1995, and had to quit my Nursing career. Since then, I've had 3 colon resections, (along with D.I.C.),
dx with APS,severe degenerative disk disease, heart disease, and most recently, diabetes type 2. I have 2 grown children, and one at home with developmental challenges. My divorce was final in 2003. Some days are better than others, I do have a strong faith.

Hello All,

My name is Stephanie M, I am 32 years old and a single mom of a beautiful daughter. I have SLE and many of the associated issues and diseases like Reynolds, Pleuracy, Periphreal Neuropothy, Migraines, Anticardiolipid Antibodies, Alopecia, rashes, swelling, kidney involvment, insomnia and exhaustion... I have experienced various symptoms all of my life, since age 3. Various treatments were unsucessful, as a teen I chose not to actively search for a dx so I did not get a formal diagnosis until 2004. The road since then has been rough. My husband left during a very bad flare in 2005. I am currently a patient at Johns Hopkins in Baltimore, MD. For me, less is more. I take the fewest meds possible. I have very negitive reactions to steroids regardless of the mode...oral, IV or injected. I currently take Plaquinil, Neurontin, Trazodone,Flexeril and Lidoderm.
Bringing my eight year old daughter into this world was very difficult. I had three losses before her. I am very blessed to have her! She has struggled with severe food allergies since birth. Oddly enough, her allergist is begining to suspect autoimmune disorders as well. I have posted some of my previous writings in my journal, feel free to view them. Im sure we all have a lot in common. My hands are stiffening, I must quit for now! Keep-on-keepin-on! And don't forget your nap!