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Lupus Online Support Group
A community of patients, family members and friends dedicated to dealing with Lupus, together.
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08/25/2008 16:59
sweetdoconnell
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My name is Dona, I am 25 years old and was diagnosed with Lupus 2 years ago. I live in Brockton, Ma and married to a wonderful man for 5 years. I also have 3 wonderful children ages 4,3 and 2.

After having my son 2 years ago, I unforunately got really sick and had alot of fluid on my lungs and protein in my urine. I was hospitalized for 2 weeks not sure at first what was going on, they thought at first that i might have Lymphoma because my lymph nodes were all swelled up through my body and extremely high fevers. After alot of tests they finally diagnosed me with SLE and not knowing what to do at first, it seemed scary to me. I didn't know if this disease was fatal or if it was something that I would have to live with for the rest of my life or what. I lived in Az at the time I was diagnosed and my husband was orginally from Boston, MA.

So when I got home from the hospital, I had alot on my mind and didn't know really what to do or how to deal with this new illness in my life. My husband decides for us to go back to Boston, Ma where they have outstanding drs and hosptials.

Finally, being in the Boston area for almost 2 years now, I'm doing so much better with my health with Lupus. I'm on Prednisone, Plaquenol, and Immuran for my medications right now.

Thinking that my lupus was under control, i had another obstiscle with dealing with Avascular Necrosis, of the hips, knees and shoulders because of the long term doses of prednisone. So I decided to see a bone specialist and he decided to do MRI's and x-rays.

He then referred me to see a surgeon about this matter and from there he did surgery on my hips August 5, 2008 which was core compression of the hips. Hopefully this procedure will work so that i don't have to have a hip replacement in about 6 months.

So that pretty much sums it up for me and my dealing with Lupus and Avasular Necrosis, I think I'm a very stong person having to deal with this and always looking for a better alternative in life.

I hope i found a good support group to where I can find good friends that are going through the same thing and help each other out.

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08/25/2008 19:33
mumeva
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Hi Donna, wow you sound like such a strong young woman and dealing with alot at your age. Lupus is different in everyone. It affects not only the skin-blood and organs as well. I have central nervous system lupus vasculitis along with peripheral nervous system lupus. I am now 50 but got this illness when I was 35. I am slowly tappering off of prednisone I alternate days with 2 and 3 mgs. I had been on 60 for quite awhile. I did have a bone density test done and the results were good. I am also taking cellcept and imuran. I had my first brain hemorrhage a year ago today and my second one in January of this year. I also have arthritis. I deal with this illness as best as can be and I also have a wonderful husband going on 30 years tomorrow. I have a daughter who is married and is 23 and a son who is 27. There are a lot of wonderful people on this site that are going thru the same illness maybe in different ways. Its a great place to meet wonderful people. Take Care,

Eva

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08/25/2008 21:36
redhairali
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You have certainly been through a really rough patch. I hope you are recovering nicely from your surgery. The people here are nice. I hope to here more about you through your posts.

Ali

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08/26/2008 07:14
momwife26
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I hope things get better for you, I know it is hard dealing with this disease and having a large family. How do you cope with all of that? I have three children and ok doctors and not a lot of help but I have not had to have a hip replacement or anything like that yet at least. I sometimes worry about what the future will bring, I am not sure about a lot of things. Just know that you are not alone. I hope I pray that things go well with your surgery.
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08/26/2008 08:54
sweetdoconnell
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Post edited by: sweetdoconnell, at: 08/26/2008 08:56
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