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 Posted: Tue Dec 13, 2011 1:15 pm
Well I wanted to start a topic about Lupus because I am a sufferer of Lupus. And I have been since maybe 2006. Lupus should matter to all women because it affects more women than it ever will men.More African American and Hispanic women suffer from the disease than Asian or Caucasian. But all women are at risk for it. Lupus is an autoimmune disease. It is where your own immune system attacks your body and internal organs. Currently there is no cure for it you can only keep it in check with immune suppressing drugs. Such as plaquenil. Lupus can be caught early if you simply go to your doctor and get tested. I wish I had known I was a candidate for lupus. Some doctors think it is hereditary but no one in my family or in my family history has ever had lupus. So it could happen to anyone.Early symptoms of the disease are what we call the butterfly rash. It is a reddish rash that raises from the skin and can be itchy it will later darken on the skin.It is called this because of the shape it takes. It looks like the wingspan of a butterfly. Butterfly Rash
It can appear on your face,legs,arms,body. Anywhere. Another common symptom that is an early warning sign is aching or tingling joints. Lupus is considering to be a rheumatic disease because it can affect your bones and joints.Now I want to share my personal story with you all. I have known about my lupus since 2006. It might have been there for quite a while though. It manifested when I was working my summer job the first thing I had was the butterfly rash.It appeared on my legs I thought it was bug bites because I was outdoors where bugs could easily have bitten me. I informed my mother and she thought the same thing as me. Soon the rashes went away and after the job was over the rash did not come back. Until thanksgiving. My face a red rash had spread from my cheeks across my nose. It was then that my mother took me to my pediatrician and he recommended some blood work be done and that I see a specialist. She then informed me that she would put me on meds to see how I responded before she would make her diagnosis. I was started on plaquenil and a steroid known as prednisone. My rash cleared up and my joint pain had ceased.It was then that she told me I had S.L.E. (Systemic Lupus Erythmatosis ). She told me it was not curable but there had been progress made so I would not die from it immediately. Now I was only maybe 16 and I thought my life was over. I felt depressed and when I told my best friends most of them cried. I tried to tell them I would be alright and that I was a fighter...but still I felt sad wondering how I would go on living like this.
Needless to say I have not died as of yet. But my life has taken a drastic turn because of the lupus. Because the lupus can affect any of my internal organs whenever my kidneys have been affected. Neither of them are functioning at 100% but I am still able to go to the bathroom. I am currently on dialysis 3 times a week for 2 hours and 30 minutes a session. The ultimate goal for me is to one day get a kidney transplant. Still I can't help but wonder what life might be like if I had never gotten sick. I have spent countless stays in the hospital and been on deaths door at least 3 times. I would not wish my condition on even my worse enemy.So ladies if you have any comments,questions or stories then please post here. I will try to be here to acknowledge everyone but with dialysis on mon,wed,and fri I do get very weak from time to time.
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Posted: Tue Dec 13, 2011 4:27 pm
You're so strong. I can't even imagine how I'd be able to live if my life took a turn like that. I have never experienced such symptoms, but how is Lupus caused?
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Posted: Tue Dec 13, 2011 5:08 pm
<3 Keep fighting Girl.
A friend of my mother's has Lupus. She has had it for about 7 years I believe (Don't quote me on it though). I don't know the levels of severity but from my point of view she has it really bad. There are some days where she can't get out of bed her joints hurt so bad.
She is one of the strongest and nicest ladies I have ever met.
I can't imagine what you must go through on a daily basis and thank you so much for posting this.
So many women and young ladies these days have no idea of what to be testing for and signs they should be looking for.
I would love to pray for you, if that would be alright..?
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Posted: Tue Dec 13, 2011 9:26 pm
Monochrome Monster You're so strong. I can't even imagine how I'd be able to live if my life took a turn like that. I have never experienced such symptoms, but how is Lupus caused?
Well causes of lupus vary. Like I said no one in my immediate family has or had lupus. But maybe in my genetic code a long lost relative had lupus.Doctors believe it can be heredity. It is not something you can catch from human contact. Though there are three types of lupus. And I am referencing a book I received about the condition titled Lupus Q&A Everything You Need to Know.Authors: Robert G. Lahita, M.D., Ph.D and Robert H. Phillips, Ph.D
Systemic Lupus, Discoid Lupus, And Drug induced lupus.
Systemic is what I have Discoid lupus is where it manifests on the skin and is often a result of having systemic lupus. These two forms have no known causes according to the book.
Drug induced lupus occurs from drugs that are being taken at the time. But studies have shown that you can be predisposed to getting lupus if you ever have to take certain drugs. The most common of these drugs being:
pronestyl (procainamide)-used to treat heart arrhythmia
apresoline (hydralazine)-used to treat high blood pressure
INH (isoniazid)-used to treat tuberculosis
And it was hard for me for a while. I was only a junior in high school when everything hit me at once. My skin had finally cleared up and I was looking forward to junior prom. Then Lupus happened and the rash came next was the swelling in my legs.I had to change my diet and even the way I dressed. For a while I could not wear any closed toe shoes because the swelling would not allow them to fit.I remember breaking down a crying one day during Spanish class because the school had passed a rule about no flip flops being allowed in school. My teacher wanted to send me to the office then I explained to her they were the only shoes I could fit due to the swelling. And I took out my doctors note and she understood. It's rough but I figure if I can get women educated early then maybe they will not have the same experiences I have now.Edit: I just remembered another early sign of Lupus is hair loss. When I found out about my lupus most of my hair fell out. It was not due to stress and the doctor informed me that hair loss is common. It might be a little or quite a lot. I once had hair that reached to my back and it was my favorite part about me...then one day my mother was combing my hair and most of it was in the comb.She cut it into a really nice bob for me but it was a huge change.My mother cried and then my dad cried because he knew how much my hair meant to me. Because my kidneys no longer work as well as they should my lupus has been fairly silent. Oh the irony. sweatdrop
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Posted: Tue Dec 13, 2011 9:36 pm
jesusgirl115 <3 Keep fighting Girl.
A friend of my mother's has Lupus. She has had it for about 7 years I believe (Don't quote me on it though). I don't know the levels of severity but from my point of view she has it really bad. There are some days where she can't get out of bed her joints hurt so bad.
She is one of the strongest and nicest ladies I have ever met.
I can't imagine what you must go through on a daily basis and thank you so much for posting this.
So many women and young ladies these days have no idea of what to be testing for and signs they should be looking for.
I would love to pray for you, if that would be alright..?
I met a lady who is staying at a woman's shelter that my mother volunteers at on saturdays. She could not come to the meeting downstairs because she too was afflicted with lupus. And on this particular saturday I had come to the shelter with my mom. And it was then that I knew my purpose was to meet this woman. She was in tears because her pain was so bad. And the government had denied her social security benefits. So we talked to her and my mother and I knew we had to do something for this lady so she could get some help.
And yeah I figured posting this would help get the message out. Digital media is a fast way to get something to people these days. xd And yes I would love to have you pray for me as well. I have a team of people praying for me it never hurt to have one more.
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