I have been wanting to write about this for many years. It's a idea substitution for another diary I was considering that was to have been titled 'Where's The Celebrity For My Disease?'. I have read here on Daily Kos from many of you who developed some form of cancer, heart disease, or many of the known ailments out there. I have even read about fundraising events for their diseases. But not one on Lupus. Now, this has changed. And in some surprising ways.
In late spring (May) 1995, I was diagnosed with two forms of Lupus. SLE - Systemic Lupus Euramatosis, and Lupus Nephritis, a kidney disorder. Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs. No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time. The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include: Fatigue and fever. Joint pain, stiffness and swelling. Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose. Skin lesions that appear or worsen with sun exposure (photosensitivity). Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon). Shortness of breath. Chest pain. Dry eyes. Headaches, confusion and memory loss. Some people with lupus develop a form of kidney inflammation called lupus nephritis. Lupus nephritis occurs when lupus auto-antibodies affect the filtering structures (glomeruli) of your kidneys. This abnormal process results in kidney inflammation and may lead to blood in the urine (hematuria), protein in the urine (proteinuria), high blood pressure, impaired kidney function or even kidney failure. I was given Prednisone to keep my body from further degradation, and and Cytaxin to help my kidneys. I was on Cytaxin for two years and did very well, but the Prednisone ate away at some of my bone mass in my hips and had to have hip replacements of both hips in 1999. As the years progressed, I became aware of information about other people with lupus or of a family member who has lupus.
I went to a group meeting and found myself as the only man in the meeting. I learned that most of those with Lupus are women. When men do get lupus, their treatment may be affected by a physician’s relatively limited experience in treating men with lupus. Little is known about the disease when it attacks men. It took the doctors on my case almost two weeks to discover that I had both SLE and Lupus Nephritis.
But the first I heard of someone having lupus was in 1993. That was the singer known as Seal. It was said he had discoid Lupus as a child. Seal had dreadlocks in the early 90's but by the time I developed lupus, he started shaving his head. The scars on his face are much more pronounced. In the mid-2000's, I became aware of foundations and charities started by a couple of well known celebrities. Howie D of the Backstreet Boys lost his sister Caroline Dorough-Cochran to lupus complications. So in her memory, he founded the the Dorough Lupus Foundation. Sharon Stone’s sister Kelly was also diagnosed with Lupus and together they founded Lupus L.A. Also working with Lupus L.A. is singer Toni Braxton who also has Lupus.
Several years ago, actress Kristen Johnston announced via Facebook that she was diagnosed with Lupus Myelitis. She is best known as Alien Security Officer Sally Solomon from the comedy series '3rd Rock From The Sun'. At the time of her diagnoses, she was in the process of filming her latest show, 'The Exes' on TV Land. (Just found out her show is being cancelled after four seasons.) Lupus myelitis is a form of transverse myelitis which is a neurological disorder caused by inflammation of the spinal cord. What causes transverse myelitis is not yet known; the inflammation may result from viral infections or abnormal immune reactions. Before that, Nick Cannon, Host of America's Got Talent, was diagnosed with Lupus Nephritis while on a trip to Aspen, Colorado.
But many people have died from Lupus complications like Michael Wayne (his father was John Wayne), and Ferdinand Marcos (his wife was the one with all those shoes).
So I have spent over 20 years of my life dealing and living with Lupus. But I do know of some resources if you want to find out more. A good place to start is The Lupus Foundation. They are the best national resource for all things Lupus. And many groups have done fundraisers to help keep it going. In 2010 Dragon Con in Atlanta, Georgia raised over $40,000 for The Lupus Foundation. Just think that some comic and science fiction fans would do something nice like that.
When you receive a tough diagnoses like Lupus, it’s a bit much to take. But I struggle to manage as best I can. There are a lot of us with Lupus out there. And I was wondering if there are any here on Daily Kos. If so, then speak up. Don’t be shy. Share your Lupus story. Maybe we can form a group here on DKos.
Most of the technical items I have researched has come from the following sites which I would like to give acknowledgment to: The Lupus Foundation, Lupus International, Lupus L.A., The Mayo Clinic and Web MD. There is a lot more information about Lupus out there. And if you get a chance, make a wolfie a friend.
Here is a special note to mention… Over the past few years, I have been suffering extensive pain in my left hip. I discovered that the hip replacement has dislodged so this coming week, I will be in the hospital to get it corrected. I got the left hip replacement in September 1999 and that was before the ones that are being recalled over the past few years. The failure was due to how badly damaged the bone in my hip joint was. I was at a friend’s workplace when I fell and that may have been the catalyst for the pain I have had for so long. Now that I have a good medicare advantage plan which is costing me an arm, and a leg, and so many more body parts (meaning that along with my rate, I am also paying a penalty for not signing up for Part D when it came out in 2006), I was able to procure the services of an excellent orthopedic surgeon who specializes in bone graft hip replacement surgery and repair. Hopefully, I will be out pain after a few weeks of rest, and self rehab. Wish me luck and wish me well.