O.k My rant for the week. I DO NOT WANT TO MAKE ANYONE WHO HAS AN ILLNESS FEEL BAD...Please do not take this personally...It was not anyone here I was talking too. Please I am not attacking any disease or illness. I am just giving everyone my story and how it made me feel... O.k so I have Lupus. I have had it a long time. I HATE talking about it...I dont talk about it and it does not run my life. It is not conversation I am interested in having...lol. I have better things to do then talk about illness...at least for me. I have a person in my life who is battling something...I wont say what. This person just never stops talking and always wants to compare illnesses. I dont want to talk about that stuff at all. I believe I stay well BECAUSE I stay positive. Because I dont give it mental attention. But this is where I just get sooooooo angry. Her illness has cures. There are treatments and many possibilities. TONS of money is poured into what she has. In fact she is almost cured. She keeps saying she understands where I come from...She compares our illnesses... But I need to say this... LUPUS HAS NO CURE AND NO TREATMENT...If it gets you...you die! That is it. There is no medication to treat side effects(except for deadly steroids..which is not a permanent fix) , there is BARELY any money put into Lupus(compared to many diseases). It has gotten so bad most ppl dont even know the color of our ribbon...Most think its a skin disease...lol To top it off we are getting such low amounts of attention many of the walk-a-thons no longer exist or people dont know about them.! There is a Lupus awareness day...But most ppl dont know about that either! Any treatment you do get is *test dummy stuff. There is typically not a lot of time to treat the big stuff and you die! Kidney failure, sudden heart failure, aortic aneurysm, stroke and more is how we die. It never goes away and there is no cure. Literally you can have a great day and the next have a stroke. THIS IS LUPUS...(SLE) What is systemic lupus erythematosus? Lupus is an autoimmune disease characterized by acute and chronic inflammation of various tissues of the body. Autoimmune diseases are illnesses that occur when the bodys tissues are attacked by its own immune system. The immune system is a complex system within the body that is designed to fight infectious agents, such as bacteria and other foreign microbes. One of the ways that the immune system fights infections is by producing antibodies that bind to the microbes. People with lupus produce abnormal antibodies in their blood that target tissues within their own body rather than foreign infectious agents. These antibodies are referred to as autoantibodies. Because the antibodies and accompanying cells of inflammation can affect tissues anywhere in the body, lupus has the potential to affect a variety of areas. Sometimes lupus can cause disease of the skin, heart, lungs, kidneys, joints, and/or nervous system. When only the skin is involved by rash, the condition is called lupus dermatitis or cutaneous lupus erythematosus. A form of lupus dermatitis that can be isolated to the skin, without internal disease, is called discoid lupus. When internal organs are involved, the condition is referred to as systemic lupus erythematosus (SLE). Sorry to rant about something so bad but it just makes me angry. Put it this way... I asked me husband once how he felt. He asked me Do you really want to know? I said yes. He said Honey sometimes when I drive up to the house I sit for a minute before going in. I said Why? He said Im afraid that I will find you in a bad way... Now he must endure this for our entire life...There is no treatment that we are hopeful about. There are no doctors calling and saying Well we think this treatment is going to work. We find our own things that help. We become our own doctors searching for answers. There is nobody saying Keep your chin up, there are many things we can try. There is nothing...ZERO! They keep talking about ideas but it is typically followed up with If we get enough funding......UGH! Why have I stayed healthy...because I have to. If I get hit hard with something...that is it! You cant un-ring a bell! O.k so I needed to get that off my chest...I am a very happy person with an awesome life. I am very lucky. I just dont want Lupus being compared anymore. Thank you everybody for letting me vent. I also want ll to know that people living with Lupus are the strongest people I know. We see the world beautiful everyday. Everyday we literally live like it could be our last...because it could. I love you all... Anita. By the way if you have any of these symptoms get checked out... What are lupus symptoms and signs? People with SLE can develop different combinations of symptoms and organ involvement. Common complaints and symptoms include fatigue, low-grade fever, loss of appetite, muscle aches, hair loss (alopecia), arthritis, ulcers of the mouth and nose, facial rash (butterfly rash), unusual sensitivity to sunlight (photosensitivity), inflammation of the lining that surrounds the lungs (pleuritis) and the heart (pericarditis), and poor circulation to the fingers and toes with cold exposure (Raynauds phenomenon). Complications of organ involvement can lead to further symptoms that depend on the organ affected and severity of the disease.
Posted on: Sun, 10 Aug 2014 23:11:49 +0000
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