... disease to say the least. I got diagnosed at 17 yrs old so I have been through a lot. I'm in a flare up right now and have to postpone my wedding;-( my fiancé is very supportive <3 but due to the side effects of the meds and the unpredictability of this disease I've decided that this was the best thing to do... I want to be my normal size in my wedding dress not the size the prednisone has made me. I have faith that with the chemo and positive attitude I will make it through yet another flare up and have my dream wedding. I have learned so much about this disease over the years and my mother is living with Lupus as well. I would be glad to answer any questions or be a crying shoulder for anyone. Anyway thanks for listening ;-)
That's such a shame you had to postpone your wedding. I'm glad you can are strong and can cope so well.
First of all, I am so very sorry for what you have been through, and are still coping with. I am happy that you have such an understanding fiancé; not everyone is as supportive.
I have only been diagnosed for about 5 years, but we can trace my first flare back to about 9 years ago. Doctors kept checking me for MS because my mom and grandmother both had it - no one warned me that I was at risk for anything else. So I passed the average onset age for MS and thought I was home free. Imagine my surprise!
Last November I was diagnosed with mild (thank goodness) but permanent lung damage from the Lupus. A couple of months later, I was diagnosed with Fibromyalgia. I must say, I think the Fibro is worse. And it complicates everything - a treatment for one sometimes can't be used because it makes the other worse. For example, I can't risk building up my immune system, because that would be feeding my Lupus and giving it more energy to attack me.
I don't know why I just told you all of this. I'm feeling very lost and hopeless, and you just seem so positive, even with everything you have going on, and I want to know how you do it. I know there are many of us going through this, but it is hard sometimes to not feel alone.
Thank you for listening and giving me a shoulder. I hope you have the wedding of your dreams, and that on that day, you can forget for a while about all the pain and just enjoy your day.
Have you tried IVIG treatments? It works for me.
I have a question. You mentioned chemo for your lupus. I also have lupus I was diagnosed in 2007 when I was 25. I was also diagnosed in 2011 with stage 3 ovarian cancer which surprised the drs because I was only 29. I had severe,severe lupus flairs during my cancer treatment. The chemo had made me so sick they had to stop it. I have beaten cancers butt!! But my lupus we can't get under control. This year in July my lupus flared so bad it caused my brain to swell and put me into a coma and caused me to start having seizures. Do you have any recommendations for me to get it under control?? I'm ready to return back to work but lupus is preventing me from doing so. I'm currently taking 200mg of plaquniel and 15mg of prednisone it really doesn't seem to be helping with the flair ups. Please any advice would be greatly appreciated!!
I am the only one in my family with this horrible disease although I have done tons and tons of research I can't find the answers I need. And I have no one to get advice from who truly understands the disease like another person living with it would... Thanks in advance for helping me!!!
Seek a naturopath. They deal with healing the body from the inside out. Therefore they don't just look at one problem they try and fix e everything. I had severe joint pain, fatigue, and emotionally it hit me hard. I am now off prednisone, hydroxyquine, and am on reduced Cellcept. My energy is back and joint pain is manageable.
Hi lovelifeanyway, I was just wondering why you had to go on chemo for your flares and what kind did you have? What where your symptoms?
I dont know where you live. I see a herbalist in Chicago that had Lupus and she cured herself of it. I hope you would be open to looking her up. She is unbelievable. She is the only person I trust with my life. I have been diagnosed with diabetes, and gout. I also have a low positive ANA, speckeled, 1:80 but the Dr. Doesnt think its Lupus. I will be meeting with her a.s.a.p. Good luck. Look her up on you tube too. What do we have to lose?
Madina J. Nance
Hi. With my near death experience with thrombocytopenia wen my platlet count dropd tn 2, diagnosed with SLE in july 2010. My outlook on life has changd. I focus on da positive side. If i do not feel good, i dress up and make myself look good 2 feel gud. And it helps. although it gets 2 me sumtyms i avoid leting my condition get me down. I tawk openly about my condition also da fact dat i hav been given a 2nd chance in life. I wud like 2 inspire others n make a diference in their life. I am a mother of 3 aged 22, 19 and 17. I am workin and presently doin my final year 4 my degree in Licensing. My husband harry, my family is my suport structure which makes a world of diference. B positive and live each day thanking da Lord. Ishara Singh. Ladysmith
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