Its frustrating when you are living a constant battle to survive, and feel dismissed by people in the medical industry and people in your life, because they cant see or refuse to see your disease. I am part of several support groups for Lupus, it helps because I find others I can share helpful things with and get support. It makes me sad sometimes though, to see people saying their spouses have left them, family has turned their backs on them, friends have faded away, because they feel lupus is all in their heads? I suppose it was in the Doctors heads too, thats treating them. I see members who are considering suicide or have killed themselves because of the lack of support they receive. To not only live with something that is constantly trying to beat you down,but feeling like you have to PROVE youre sick to people that wont take the time to research in order to understand. Everyday on average, two people die from Lupus in one of my groups of 8,000+ members. I hope they find a cure and I hope people without lupus find understanding. There is a difference between sympathy and support. I dont need anyones sympathy, dont feel sorry for me, be there, understand, and dont make me feel worse than I do just because you dont understand what Lupus is. Go to Lupus.org, read up, understand, and help bring awareness to Lupus in hopes of finding a cure. As of right now, the best we have is several chemo-therapeutic medications given indefinitely over many Years, not weeks and come with harsh side effects, that can also be fatal. A common side effect is a dangerous low white cell count causing the patient to develop various infections. For me , I spent about 6 months on Methotrexate, my liver enzymes when very high, so they stopped it to give it time to lower back down. In the meantime, my white cells dropped dramatically and in the last month I have had Liver infection, Kidney infection, tooth infection, and now looks like a upper resp. This disease is very real. I have heard like many others in our support group how if we only eat right, exercise more, and so on it would go away. There is currently NO cure for lupus. Diet & exercise can help you feel better no matter what you are dealing with, I totally agree. It is frustrating though, when your in too much pain to work out, or if you push yourself to workout you end up sick or injured. When you have a headache, tummy ache, a bad day at work, I cant see those....but I still hope you feel better and give you my support. ;-)
Posted on: Wed, 10 Sep 2014 14:29:02 +0000
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