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| *Women health>>>Lupus |
Diagnosed with lupus, can anyone relate? |
Serious responses only please. I have systemic lupus. I was diagnosed after two weeks in the hospital with "acute onset" lupus. Now that I know how lupus acts, I can tell you that my first flare was when I was 13. I was diagnosed at 51. In my 30's doctors dismissed my symptoms, including frequent pleurisy, fevers, joint pain and fatigue as either a nasty virus that I could not beat or being under too much stress. So, I stopped going. I worked up until the day I finally could not get dressed. I called a friend who called 911. 14 days later I finally returned home, still very sick. I had bone marrow failure, congestive heart failure, beginning of kidney failure, a urinary tract infection and a horrid rash. Now I work for the Lupus Foundation of America and play the organ at a small church on weekends. My lupus is relatively well controlled with medication. I have been on chemo for the kidneys for nearly 4 years and they are functioning in the normal range. I got off prednisone a year ago. Taking super good care of yourself by eating well and exercising, learning stress reduction techniques and followiing your treatment regimen can usually keep the lupus pretty calm. Yes, there will be inevitable flares. When you learn to recognize one coming, call your rheumatologist immediately. You can find a wealth of information and your local chapter by going to the link provided. Source(s): www.lupus.org my mom has lupus and she is very healthy but she has to take around 8 medications per day but as long as you take Ur medication you will be OK... I am so sorry. I am going through a difficult time as well. They think I have multiple sclerosis and my body feels like mike tyson beat the hell out of it. I haven't been able to work for 8 months and my homes in forclosure. It is hard on everyone when you get sick. It is hard on children and spouses and families. I hope you find a good support group and a good church. My grandmother had it, and I have enough signs of it to raise concern. The way that I found out was when I was really sick and had a lot of lower back pain. I went to the dr and in addition to the kidney pain, I also had a facial rash and sores in my mouth. I was told to get a kidney punch but I opted not to, and just rode out and treated the attack. Once that cleared up, honestly, I just never bothered going back to the dr as I do not believe in taking steriods. They cause too many other problems that lead to large issues for my grandmother. She was to the point that she would so much as cough or sneeze her ribs would break from being so brittle. It has been about 5 years since my initial brush with symptoms, I eat well, exercise daily and take good care of myself and haven't had a problem enough to stop me since. Occasional rashes and mouth sores still pop up. I just don't let it get the best of me and find that it works for me to live the lifestyle that I do. My grandmother went all out and fought this disease with every treatment and option they gave her and she passed away at age 55. It did not help her to fight it in my opinion as she deteriorated so rapidly from the treatments, so that is my motivation to just ride it out. I'm 31 and was diagnosed with SLE 12 yrs ago. Here's some info I have saved... feel free to email me if you wish. HTH please go to the Lupus Foundation of America site www.lupus.org and read all the information they have. It is the most current information available and you will learn a lot! Also, either buy or go to the library and get Dr Daniel Wallace's "The Lupus Book" 3rd Edition and read it cover to cover. Dr Wallace explains in layman's terms everything you need to know.... just as the LFA does. The LFA also offers a magazine called Lupus Now which is full of great info. The Arthritis Foundation www.arthritis.org also has a lot of helpful information, a magazine Arthritis Today. There are over 100 forms of arthritis so there's a lot to learn. The National Institute of Arthritis and Musculoskeletal and Skin Diseases offers FREE publications. Take advantage. http://catalog.niams.nih.gov/ There is a wonderful lupus booklet which is completely free. There are many other pieces of great info also. Medline: Lupus offers links to news and resources about the chronic autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue. www.nlm.nih.gov/medlineplus/lu... You have to be your own health care advocate. Your doctor is not going to sit down and educate you in regards to lupus, fibro, etc. He/she doesn't have time and most likely doesn't even know where to begin. |
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