cure4lupus
female - 31 years, Omaha, United States
Blog 25
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New this week...(ending 5/22)
This week's Media Campaign pick was Anderson Cooper 360
Glossary of Lupus Terms - -itis, arteritis, peritoneal cavity, tinnitus.
Lupus Stories - Jeani's Story
Lupus Videos - ALR Faces of Lupus Video Added.
Celebrities & Lupus
Lupus Symptoms - Peripheral Neuropathy, Gastrointestinal Tract, Arteritis of the Large Intestine, Ascites, Chronic Diarrhea, Dysphagia, Hepatomegaly, Nausea & Vomiting, Autoimmune Inner Ear Disease (AIED), and Splenomegaly.
Lupus in the News
SLE Genetic Studies - NIEHS Study
Online Studies - National Databank for Rheumatic Diseases
Lupus Products - New: Lupus Awareness Car Decorations Page, Lupus Awareness Home Decorations Page, Purple Awareness Ribbon Products Page, 12 Lupus Awareness Journals.
Events Calendar - Long Island Walks w/ Us, June 10; Denver Walks w/ Us, Sept. 29; Dallas Walks w/ Us, Sept. 29; New York City Walks w/ Us, Oct. 13; Washington D.C. Walks w/ Us, Nov. 3; San Francisco Walks w/ Us, Nov. 3; Houston Walks w/ Us, Nov. 17.
Lupus Research News:
http://cure4lupus.org/news/07/news_lribiomarke...
Stem Cell Research News:
http://cure4lupus.org/news/sc07/scnews_051607....
http://cure4lupus.org/news/sc07/scnews_051607_...
http://cure4lupus.org/news/sc07/scnews_051607_...
http://cure4lupus.org/news/sc07/scnews_051707....
http://cure4lupus.org/news/sc07/scnews_051707_...
http://cure4lupus.org/news/sc07/scnews_051807....
http://cure4lupus.org/news/sc07/scnews_051807_...
http://cure4lupus.org/news/sc07/scnews_051907....
http://cure4lupus.org/news/sc07/scnews_051907_...
http://cure4lupus.org/news/sc07/scnews_052107....
http://cure4lupus.org/news/sc07/scnews_052107_... -
New this week...(ending 5/14)
This week's Media Campaign pick was Dateline
Lupus Poetry & Humor - Now, & I am not this body.
Lupus Stories - Lisa's Story, & updated Kendra's Story (updated)
Lupus Products - New: Purple Ribbon Guardian Angel Pin, Purple Ribbon Survivor Bracelet, Purple Ribbon Heart Locket, Purple Ribbon Flag, Purple Ribbon Garden Flag, Purple Ribbon Watch. Price Reduced - Purple Antenna Topper, Purple Butterfly Italian Charm, Purple Ribbon Italian Charm, Purple Ribbon Charm Post Earrings, Purple Ribbon Charm Wire Earrings.
Stem Cell Research News:
http://cure4lupus.org/news/sc07/scnews_050807....
http://cure4lupus.org/news/sc07/scnews_050807_...
http://cure4lupus.org/news/sc07/scnews_050807_...
http://cure4lupus.org/news/sc07/scnews_050807_...
http://cure4lupus.org/news/sc07/scnews_050807_...
http://cure4lupus.org/news/sc07/scnews_050907....
http://cure4lupus.org/news/sc07/scnews_051007....
http://cure4lupus.org/news/sc07/scnews_051107....
http://cure4lupus.org/news/sc07/scnews_051207....
http://cure4lupus.org/news/sc07/scnews_051407.... -
New this week...(ending 5/8)
This week's Media Campaign pick was The Oprah Winfrey Show, also check out the update on: The Martha Stewart Show
Why go to Lupus Support Groups?
Lupus FAQ - Break the Cycle
Political Candidates - added listing of US House members co-sponsoring the Lupus REACH Amendments of 2007, also added contact info to all candidates, and Stem Cell Importance
Get Involved - Online Studies, Study for couples w/ Lupus.
Lupus Products - New: Fibromyalgia Sucks Bumper Sticker, Someone I Love has Fibromyalgia Bumper Sticker , What's Your Excuse Fibromyalgia Bumper Sticker , Fibromyalgia Sucks Key Chain , Someone I Love has Fibromyalgia Key Chain , What's Your Excuse Fibromyalgia Key Chain , Awareness Ribbon Punch, Awareness Ribbon Stamp, Awareness Ribbon Embellishment, Survivor Embellishment , Oval Survivor Embellishment.
Events Calendar - May 9th – LFA Live Chat – Social Security, June 6th – LFA Live Chat – Emotions of dealing w/ Lupus, October 13th – Des Moines, IA LFA Walk.
Lupus Research News:
http://cure4lupus.org/news/07/news_040407.htm
Stem Cell Research News:
http://cure4lupus.org/news/sc07/scnews_050307....
http://cure4lupus.org/news/sc07/scnews_050307_...
http://cure4lupus.org/news/sc07/scnews_050307_...
http://cure4lupus.org/news/sc07/scnews_050307_...
http://cure4lupus.org/news/sc07/scnews_050507....
http://cure4lupus.org/news/sc07/scnews_050507_...
http://cure4lupus.org/news/sc07/scnews_050607.... -
What is Lupus?
What is Lupus?
Lupus is a very serious, chronic (life-long), inflammatory, autoimmune disease. Autoimmune is a class of diseases that share one characteristic, they all involve the immune system turning against the body. Our immune systems are designed to fight off foreign invaders like bacteria and viruses. With autoimmune diseases like Lupus, the immune system sees normal healthy cells as foreign invaders and attacks them. This causes the body to respond naturally with inflammation to expel the invader. This inflammation is what causes the pain, and discomfort as well as sometimes permanent damage to the cells.
There are several different kinds of Lupus:
Systemic Lupus Erythematosus (SLE) is the form of the disease most people are referring to when they say Lupus. It is the most common. The word systemic means the disease can affect the whole body including the skin, joints, tendons, blood vessels, muscles, organs, etc. Each Lupus patient is different some have a more mild form of SLE whole others may have severe, life-threatening disease.
Life Threatening Lupus is defined as SLE affecting one or more vital organ such as the heart, lungs, kidneys, or liver.
Discoid Lupus Erythematosus is a chronic skin disorder in which a red, raised rash appears on the face, scalp or elsewhere. The rash may last for days or even years and it also may recur. The raised areas may become thick and scaly and may cause scarring.
Subacute Cutaneous Lupus Erythematosus is skin lesions on parts of the body that are exposed to the sun. These lesions do not cause scarring.
Drug-induced Lupus is a kind of Lupus that is cause by medications. The symptoms are similar to SLE and usually go away after the medication is discontinued.
Lupus in Overlap w/ other Connective Tissue Diseases is Lupus with one of the following other diseases also: Rheumatoid Arthritis, Polymyositis-Dermatomyositis, Scleroderma, Sjogren's Syndrome, various forms of Vasculitis.
Neonatal Lupus is a form of Lupus found in newborn babies born to mothers with Lupus, Sjogren's, or no disease at all. It is very important that women with Lupus be closely monitored by a physician during pregnancy.
There is no cure for Lupus at this time. We also do not know what causes Lupus. Genetics, drugs, hormones, environmental factors (UV light, viruses), etc. are all possible contributing factors to SLE. People with a family member that has an autoimmune disease are far more likely to develop SLE than the general population. Women are also far more likely to develop the disease than men so hormonal factors are being studied.
We here at Cure4Lupus.org believe that we need a cure for this disease, not just more toxic treatments. We support only the research that is aimed directly at finding either the cause which could lead to a cure, or for a cure itself, not just more toxic drugs. -
Kendra's Story
My name is Kendra and I suffer from life-threatening SLE. I am 28 years old and a co-founder of Cure4Lupus.org. Lupus is a disease that affects everyone very differently. Some people have different symptoms than others, and some people have life-threatening disease while others just have some sore joints every once in a while. I thought I would share what Lupus has been like for me.
I first started having symptoms at age 13. I would complain of joint pains, headaches, and stomach problems. I was treated for tendonitis, stress headaches, ulcers, scoliosis, and other things. By the time I was 17 it became apparent that I had something more going on than a string of unconnected illnesses.
I was not insured at that time so my doctor visits were sporadic at best. I had a great-grandmother that had Rheumatoid Arthritis (RA), so after doing some research, RA was my best guess. I was experiencing a lot of joint pain at that time, even to the point of being crippling at times. My "bad days" were more like bad 3 days. I was having fatigue and weakness but didn't realize what was causing it, and like most of my symptoms I just assumed it was normal for a long time.
At 18 I got insurance for myself and began seeing a doctor. He told me that it looked more like Lupus than RA, but that more work needed to be done to find out for sure. At that time I was going through many flares and remissions. At times I would be pretty well fine and other times I would have crippling joint pain and fatigue.
I lost my insurance and wasn't able to continue treatment. I treated myself during this time with massive quantities of Aleve and rest. I had many, many periods where I was unable to work, socialize, etc. for weeks or sometimes months at a time. This continued really until I was 24.
Around 24 I again got insurance for a short time and began seeing doctors again. At that time I was diagnosed with Premature Ovarian Failure secondary to the Lupus. Basically that means I went through menopause and will never be able to have children of my own. With the hormone changes I gained about 20 lbs at that time. My flares got longer and closer together until I was counting the good days because it was easier than counting the bad ones. I had to quit working and filed for disability.
Even though I had no insurance my illness was too severe to not go to doctors so I went as much as I could afford to pay for, and I got as much medicine as I could afford to pay for. OMG, I could tell you some stories about some heartless doctors and some of the shotty care I got because I didn't have insurance, but that is another story.
I finally got the Lupus diagnosis for sure in early 2004, making me officially un-insurable. At that time they discovered that there was severe damage to my kidneys, and I was admitted to the hospital for a kidney biopsy. The results came back as Class VI Lupus Nephritis and I was told that meant my kidneys were scarred the most they could be and there was nothing to treat it with, the damage had already been done over the years I wasn't seeing doctors. I was told that my kidneys would fail and I would need dialysis and a transplant.
During that time I also started the parade of medicine. I have tried so many drugs I couldn't possibly remember them all. Some of them I have been allergic to causing all sorts of nasty things, I remember those drugs. I have had drug toxicity due to my kidneys inability to clear them from my body. Many just plain didn't work. The best part though has been the side effects of the ones that actually worked.
One of those meds was Prednisone, a steroid. After starting Prednisone, I promptly gained another 30lbs, my face turned into a balloon, my ankles became flotation devices and my skin lost collagen so I got stretch marks all over my body. Another fun medication I started on was a chemotherapy drug called CellCept. This one cost $400 a month and for that I got the pleasure of headaches, thinning hair and reduced resistance to infection. When I was having a particularly bad flare, I would get a bump in Prednisone and another 10lbs.
After moving back to Iowa where I am on a program for the un-insurable, I have seen some of the best doctors in the world at the University of Iowa. I am getting excellent care, unfortunately that doesn't mean I feel better, as a matter of fact I feel worse. They have doubled my dose of chemo, tripling the side effects. Because of my decreased resistance to disease, I got a case of Shingles for the record books I think. If you haven't had the pleasure, let me just tell you it is a little slice of hell! I have endured a lot of pain in my day but Shingles takes the cake by far! I also got a complication of Shingles known as PHN which is basically code for the pain hangs around for months or even years after the rash is gone.
Currently, December 2006, I am taking pills 5 times a day, over 50 pills per day in all, not counting any as needed meds. I go to doctor appointments on average 2-3 times a week. I have manageable pain (and by that I mean Vicodin is my friend), random joint inflammation and pain, pain from the Fibro, severe insomnia, depression, anxiety, pancreatitis from the Prednisone, Hyperthyroidism, Sleep Apnea, daily headaches caused by Idiopathic Intracranial Hypertension that is threatening my eyesight, and I am sure I am forgetting things. I don't recognize myself in the mirror anymore. I spend most of the days I am not at doctors' visits resting, and watching TV. I have had to stop trying to lose the 70lbs I have gained over the last 3 years, it is impossible on the Prednisone dose I am on right now.
Now that I have talked about all the bad things it is only fair to mention the amazing gifts I have gotten from having this disease. I know that sounds strange but, I am honestly thankful for the patience it has taught me. It has made me live in the moment and to make the most of everyday. Lupus has also given me an amazing amount of compassion and empathy for others! And, I am most grateful for the strength I have built, I know I can make it through anything!
