i was diagnosed with this condition in the year 1999. i was an asst. mgr where i was employed and that year i received the award for the most valuable employee. after that everything went down hill. i never knew what was wrong but i worked everyday and got sicker everyday. i have had a thyroid condition since i was 30 so i used to attribute everything to that. i retired in 20001 after that everything got worse depression, high chlolesteral, high blood pressure and fibromalgia. i am 58 years old and sometimes i feel like i am 80. i finally got my disability in 2003, but i lost a lot waiting for that to happen. i almost lost my house and it seemed like the world was collapsing around me. but here i am still in a lot of pain, depressed and so tired all the time. sometimes things get better or they seem to and then the lupus comes back stronger than ever. i just want to hear from other people who have this condition maybe i will feel better who knows but it does not hurt to try.
I have recently been diagnosed with lupus. I would like to know more about the disease and meet others who will understand what I have been going through. I am married to my knight in shining armor and we have 5 beautiful children. 3 boys and 2 girls. We are a homeschooling family and would love to get know others who are dealing with this lupus.
I have a life-long history of prolactinoma, as well as frequent urination and excessive thirst. For years I have had an odd discoloration/rash on my chest and neck. It looks somewhat brown in the morning, but as soon as I start moving around it turns red, and becomes quite red if I exert myself in any way. I also have skin discoloration under my armpits, like a tan. I have struggled off and on with muscle aches and joint pain for years, but lately it, combined with severe fatigue, have made it impossible for me to do anything other than drag myself to work, come home and fall into bed. Blood work shows low morning cortisol, but response to ACTH stimulation, although my baseline ACTH was in the mid-range. I also have borderline-low renin, and low aldosterone. Also I have somewhat elevated platelets, which I read is a sign of inflammation. I have been researching these problems on the internet and discovered they all could be caused by problems with my hypothalamus, which, in turn, could be caused by lupus. Auto-immune disorders run in my family. I’m trying to learn more information about this disorder in preparation for my upcoming doctor’s appointment (with an endocrinologist) on July 10.
My wife has Systemic Lupus and has since she was 18. I have currently been with her for 6 1/2 years. Finding out new stuff all the time helps me stay on top of her condition.
Hi!!! I was diagnosed with Lupus at 18. It was a VERY difficult time for me, since I JUST graduated High school, and went from being a very active Cheerleader for 4 years and being active in my community and school activites. It really FORCED me to grow up quickly. When I was told I had Lupus, my first thought was of a friend of mine in high school. He mom had lupus and passed away our sophomore year. My first thought was, "I’m gonna die."
I ended up “living” in a hospital for 3 months. And was told I would be lucky to live to the age of 21. Well, I have long beat the odds. I have had several close encounters with death b/c of Lupus and also not due to the lupus, but I have have risen above and won the battles. I had a tubal pregnancie when I was 25-in the early party of 2005. It went undiagnosed for 3 months!!!So, my tube ruptured and I was bleeding to death internally. I ended up having my tube removed and was told chances of getting pregnant were slim to none and if I did get pregnant, then, I would prolly die, so If I got pregnant, I would need to terminate it.
Two weeks after my surgery, I was pregnant with my daughter who was born a month early, but was more than ready to enter the world. She was 5 pounds 1 oz and healthly except for having withdrawls from my mediciation. She had to have a blood transfusion before she was even 12 hours old, but after that, 3 days later I was bringing her home. I had some complications after she was about a week old, I started hemmoraging. I had another close encounter with death, but overcame it and beat the odds. I had to have a couple blood transfusions, but I’m still alive and kickin-BUT I cannot have anymore children-I got my tube tied. But she’s now over a year old and wonderful and perfectly healthy… But before hand, I had suffered 9 mini-strokes, 8 DVT’s and 1 PE. So, with Lupus, it has been a long rough road. I currently have stage 4 kidney disease and aggressive lupus. I currently am takinf Cytoxan therepy for the kidney disease, which does seem to be working fairly well.
I was diagnosed with Lupus many years ago, and because of it, my health had been continuing to decline. I’ve had cancer twice, numerous surgeries and infections–in and out of the hospital constantly. A friend of mine encouraged me to try an organic powder he and his wife took that helped them. I have been using these Reliv products for about 4 months now, and have to say they really have made a big difference in my health. After the first week, I noticed my sinus infections had completely cleared up. That is something I had dealt with all my life and just expected to live with. I was allergic to everything before, it seemed. Then after about 1 1/2 months, I noticed I could get out of my car and the chair without the usual struggles because of stiffness from arthritis in my legs. Something I’ve also dealt with for some years. All my shooting pain is also gone from my joints, including hands. Most recently I’ve noticed my chronic bronchitis I’ve had for the past 3 years has been clearing up and the urinary tract infections. I had previously been going to the doctor at one point about every other week. I am continuing to take the Reliv products and hoping for continued improvement in my chronic bronchitis and urinary tract infections, which I’m told will come. On a side note benefit I never expected–I noticed too now that the cellulite in my legs I’ve had forever has been disappearing. That is an extra benefit I hadn’t even hoped for as I’d heard nothing really ever works except expensive massage machines and creams which doctors laugh at anyway. I also recently started trying another one of their Reliv products called, ReversAge, which I’ve noticed like some have told me that their hair started coming in it’s natural color again instead of gray. I’m told it has many other benefits. I wasn’t looking for younger hair, but am looking forward to some of the other stated benefits of memory improvement, reverse of damaged cells, and improved brain function. My father has a rare brain disease, so my brother and I started him on the Reliv products, and we’ve been told by doctors that they have been noticing an improvement already in his brain function. We feel he is near the end of this disease, so this was great news for us, even if it is just to give dad a little better quality of life at this point. Since then, I’ve been hearing of others who have had Parkinson’s, Alzheimer’s, and MS that these products have greatly helped.
If anyone has further suggestions for urinary tract infections and chronic bronchitis, I am always open to more information.
Hi! I am a 34 wife and mother of three. I have been diagnosed with lupus for about 9 months but I also have RA and Raynauds and Sjogrens. My family is very supportive but I feel like I am taking taking taking and that is not what I want to do. Life has changed dramatically with lupus and I want to learn how to live well with lupus.
I would like to meet other people with lupus because they will understand and I will understand them. I want to share new information we may find. I want to make new friends that I can talk to because I dont get out much. I live far from town, I lost my best friend, I feel alone. I pray often and write poetry.
HELLO I AM JULE I AM A MOTHER OF 2 CHILDREN , 24 AND 12 I ALSO HAVE A GRAND DAUGHTER, I WAS DIAGNOSED WITH LUPUS IN 1995 AND IN 2001 I WAS DIAGNOSED WITH DEPRESSION AND DIABETES, BECAUSE I AM SO SICK
I CAN’T WORK SO I HAD TO BE ON DISABILITY, SOMETIME I AM IN SO MUCH PAIN IN MY JOINT I CAN’T SLEEP SOMETIMES , I ALSO HAS WAS TO GET A HIP REPLACEMENT AND TO TOP IT ALL I TAKE 13 DIFFERENT KIND OF MEDICATION EVERYDAY TWICE A DAY. JUST WANT TO INTRODUCE MY SELF I HOPE I WAS’NT OUT OF LINE BY BEGINNING WITH MY PERSONNAL PROBLEMS.
Hello…My name is Donna and I was diagnosed with fibromyalgia 14 years ago, then a year later with lupus,I have been dealing with being Bipolar for the last 10 years. Earlier this year I was diagnosed with ra in my hands and feet… I sure got my plate filled this time around.
I have a very loving husband who supports me all the way. Three daughters 23,20,15 and two grandbabies one 4 and one 19 mths.
I work part time to keep active after years of sitting around.
Well that’s about it for my intro.
Hi my name is ronlynn white i am 36. i have been recently diagnosed with lupus. I am interested to hear how people deal with day to day , any advise, recipes , med info anything wold be helpful. thank you
Hi! :). Welcome to a group of really wonderful people
who happen to have lupus. My name is Sheila. I am
I developed lupus around the age of 10-11, with the
inflammation visible where the sun had affected my
skin. Around the age of 34 my illness intensified
because of a very intense load of stress.
The best advice I have been given is to limit stress,
enjoy my life, keep it balanced and healthy, and be
grateful for the energy that I do have.
I wish you acceptance, grace, and peace, and of
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My name is Lindy and I have dealt with Lupus and Fibromyalgia for over 15 years,diagnosed finally by a great lady doc, Dr Reddy, who is a rhematologist. I was bounced around, misdiagnosed ect ect for years, over medicated, under medicated…You will hear the stories, The best defence is a good defence, know your body, find a good doctor and do your research, You have the illness, it does NOT have you, I chose natural things for myself, not liking to be DOPED out…Meditation, yoga…work wonders, Stress and Caffine are your enemies…You MUST get your rest, and when your in pain that can be a hard thing to do.Eat lots of fresh fruits and vegies, fish…Anyway…that is my lil 2 cents worth , hope it helps…Lindy
I also was recently diagnosed with skin Lupus. The have me on Hydroxychloroquine 200MG and Clobetasol Propionate Gel 0.05%. I do exercise regularly and eat better then I did. If anyone has any advise or questions you can e-mail me at firstname.lastname@example.org.
ladylynn email@example.com wrote:
Hello my name is onyx i am a teen currently struggling with alot of the symptoms of lupus and i am trying to survive through high school and it is pretty hard…
dealing with it is very hard…considering i am young and at my age many people are judgmental but i manage to get by having hope and knowing that people can have worsen conditions keeps me going each day
Hi. I’m a 36yr old mother of 4 and I was just diagnosed with Lupus. I just joined the group and am looking for all the information I can gather. Thanks!
Hi, i have lupus,fibro.,ibs and some other illness.Hoping to find info on how other people deal with this.