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Thread: 21 with Lupus Nephritis ( my story )

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    Post 21 with Lupus Nephritis ( my story )

    Hello everyone, I guess I'll start off by introducing myself. I am a 21 year old female college student who was just recently diagnosed over the summer 2013 with lupus nephritis (stage 4) and sjogren's syndrome. It all seemed to hit me all at once. First, it started out with my feet and hands swelling up. But I didn't make much of it because I just thought I was working too hard at work. Then I began to notice how tired I was at work. I never get tired at work and let alone feel tired throughout the day. So I went to go see my university doctor who found protein in my urine and told me that it was one of two things: an infectious virus or lupus. She went with the virus. I was prescribed some pills and went about my life. Two weeks later I was hospitalized due to the extent of my pain. I couldn't walk, my feet were swollen, and I could barely keep my eyes open. While in the hospital, I developed (what I like to call) my leopard prints rashes. But somehow I developed a blood infection and my skin rash on my neck spread onto my face and blistered up to what looked like Freddy Kruger. After about a week and 8 doctors later, they finally came to the conclusion that I had SLE. I was put on plaquenil, prednisone and a bunch of other meds. However, my fatigue didn't get any better and I started to develop extreme side pains. I went to see a kidney specialist, had a biopsy, and was then diagnosed with Lupus Nephritis: Stage 4.

    For me, the hardest part was dealing with all the mood swings from my medication and lifestyle change. I went through a really long period where it was just one pitty party after another. I hated the weight gain, the skin scars, and most of all my hair loss. I hated that I couldn't live my active lifestyle of hiking and being out in the sun anymore. I was so angry at nothing and became even angrier because I knew how silly it was to be angry. But mostly I hated that I had this life plan of mine all finally figured out and then BOOM it all had to change. I had to take a semester off school, live back at home, and change almost everything I did. Lucky for me, my mom and my boyfriend have been there throughout this whole process and helped me through the depression. I'm still occasionally struggling with my self-esteem because of the changes, but the knowing that this is temporary (as far as the way I look) and will get better over time, keeps me happy and thanks to my amazing rheumatologist and nephrologist I am now back in school and living on campus again.

    I tell you all my story because I hope others read it and feel better that they aren't going through the same situation alone. Because that's what I felt when I read some of these posts. I felt a sense of relief that I wasn't alone in this.

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    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Thank you for sharing your story. I am glad that you've had the support of your Mother and her boyfriend and that you have a team of doctors who care about getting your better. Many will read your story and realize that they, like you, are not alone.
    I am glad that you joined our family and you will find that this is the most understanding, knowledgeable, and caring group of people on the internet.
    Please make yourself at home here, we are so glad to have you with us.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Hi I am 22 and I have lupus. For me I was attacked physically. I'm in remission now but not without damage. I have nerve damage in my legs n feet, had all of my right toes amputated because of the nerve damage, now I need a hip replacement n will probably need surgery on my left ankle and left shoulder

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    Same as cma i'm 22, welcome to the WHL family. Feel free to message me anytime, actually because of this site cma and I are now good friends and talk through texting and chatting. It was such a relief to find someone my age who goes through what I go through, so talk to us anytime. You are incredibly lucky you have such a great support system in your family and doctors. They were able to help you to get back to getting better and back into school. I was so angry after the first year I was diagnosed because I have the extreme sun sensitivity, all my windows are blacked out, and I pushed my body past its limits plenty of times. Been hospitalized for it, almost lost my kidneys and liver. Yet I still pushed it, I think I always will a little bit because I hate how lupus controls most everything. I can tell you this the meds made me crazy, my emotions were up and down all the time, my mom is the one who forced me on the antidepressants to balance me out. I didn't realize how crazy I was until the medication kicked in. That is something that worked for me.

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    I have a mix nephritis, the class 2 and 5...I feel so frustrated ....already have 3 months with this and don't see a change...I'm having a lot of prednisones, plaquenil and ciclosporyn...now I hope my body reacts in favor of the treatment...the first time I start swelling up once the dr. tried to reduce the dose of prednisones....how long you take to revert the effect of your nephritis... did you experience artritis during this recovering process?

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    thanks for sharing your story. Were you on cytoxin?? How were the side effects? I will be starting soon for my nephritis stage 4 and 5...

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