WeAreLupus.org - The Social Support Network for People Living with Lupus & Fibromyalgia

roselove1986

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Hlo welcome to my love,
How are you today i hope you are okey.also my name is Miss roseline,i saw your profile at
(/www.wearelupus.org) I have interest on you,i would also like to know more of whom you are and i want you to send me email on my email address (roselinembaye@yahoo.co.uk)so i can give you my picture for you to know whom l am.here is my email address believe we can move from here.i am waiting for your mail to my email address above,Remeber the distance or colour does not matter but love matters alot in life,
yours friendly roseline.
(roselinembaye@yahoo.co.uk)

12 months ago

Anteaters

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Hi,



I'm a UCIrvine student from California, Irvine. I am putting together
the third annual Fashion for Lupus and other autoimmune diseases. Please
visit www.careforautoimmunity.info, www.fashionforlupus.eventbrite.com,
or search Fashion for Lupus on youtube.com to find out more
information.



For this year's show, we are aiming to have a theme of "Journey through
Lupus." We really are trying to recruit patients, their families, their
friends, and their physicians from the area to be interviewed by our
student videographer. If you are not in the area but would be interested
in doing something like this and think that you can find someone
(perhaps family members or friends) to do the videography and send us
the results that would also be unbelievably helpful! We want your
Journey through Lupus to show to our guests and to let them know what it
really means to live your life with Lupus. We want to touch everyone's
hearts and show them that there is also hope! We want to address the
issues and mention that there is a lot of work being done that some of
our fashion show guests can contribute to. We want to give you a chance
to let them know what they can do!!! If you or anyone you know might be
willing to share with us their story and help us make a video narrative
of the Journey through Lupus to help raise awareness for Lupus, please
message me or post on the comment wall.



We also, always accept personal stories (essays, poems, home videos,
etc) to display on our website under the Autoimmune Diseases tab (which
we are hoping to expand)! Your story could be posted here anonomously if
you wish.



If you or your friends and family are in the Orange County, CA area and
would like to help out with the annual Fashion for Lupus, please message
me and let me know! Our team can always use a new perspective and an
extra set of giving hands :)



Thank you all for your continuous strength.

-Tandis Soltani and Anteaters Against Autoimmunity

19 months ago

wrightrs

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Thanks for being my friend. How are you?

29 months ago

Lilykat

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Hi Lauren! I HAVE had issues with Plaquenil toxicity. About two years ago, I kept seeing weird black spots. It was a very random thing. Happened two or three times. When I finally saw my Ophthalmologist, they informed me that it was due to the Plaquenil and that I had the very beginnings of cataracts. I stress that it was just beginning. In my exams since then, my eyes are unchanged from that point. I wear glasses and I have since I was in 5th grade. I feel like my vision is great when I wear my glasses. And I don't get those weird vision spots very often. When I do, I just try not tto drive and I spend more time relaxing. They said it was the Plaquenil but it's not so serious that I require being taken off of it. Please get your eyes checked out as soon as you can! When Iw as first diagnosed, I remember that a nurse told me she knew someone who had gone blind from Lupus....but I don't know if it was Lupus itself, or as a result from the Plaquenil. I'll ask my O if this is possible. I see them on the 28 of next month. *sigh* I don't have the best insurance, but at least it's something. :) Take care!

29 months ago

Anteaters

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I think retinopathy and retinal toxicity is considered a side effect of Plaquenil or Hydroxychlorochine. You should probably try to make sure to discuss everything about your condition and your medications with your ophthalmologist. Here is an article: http://emedicine.medscape.com/article/1229016-overview and http://arthritis.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=arthritis&zu=http%3A%2F%2Fwww.rheumatology.org%2Fpublications%2Fposition%2Fhydroxy.asp%3Faud%3Dmem

There must be other people who have this. I know my mom's mentioned vision problems during the past couple of years (after a few years of having being diagnosed and being on the medication), but I don't know if it's the same thing.

I hope you figure out what's going on and find a way to manage it with a good treatment plan and good communication with your doctors. Let me know what happens!

29 months ago

wrightrs

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Happy Birthday !!!

29 months ago

Ethel

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Hope you have a great Birthday God Bless

29 months ago

Lilykat

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Happy Birthday Lauren!

29 months ago

Mai

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Thanks Lauren! It's gonna be quite the drive... :)

29 months ago

Mai

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I haven't had the weight gain that people speak of; the lupus made me lose my appetite about 4 years ago. But OMG! I can't believe how friggin emotional I am when I'm on it! I'm not a crier... I've never been. But whoa! It was everyday, multiple times a day. I was a basket case!

So, right now I'm just on Plaquinil, Depo-Medrol shots, Indocin and Flexeril. I don't know if it's making a big difference yet. 2 days ago, my hands, arms and fingers were so swollen and stiff, I couldn't hold the steering wheel or even open my front door. I'm not too keen on how often that kind of crap happens. And I'm still pissing blood; no one's all too concerned. Maybe I should just deal with the Prednisone's side effects of instability ;)

I'm my doctor's only Lupus patient... so we're moving. I don't know if what I experience is normal, preventable, or what... But Imma go find out! hehehe...

30 months ago