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Yannosun
01-02-2012, 08:31 PM
Hi,

My name is Andrea and I am from Melbourne and suffering with the harsh Australian summer !!
I was diagnosed with cutaneous lupus about 18 months ago after somehow going from a sun lover
about 12 years ago to living a life that seems to revolve around constantly trying to avoid the dreaded UV.
I have been on and off plaquenil for the last 4 years (on it even prior to diagnosis) and I find this really does
help me but it seems to make my hair fall out. Lupus is not a good thing for self esteem !!

The fatigue that seems to plague SLE sufferers also seems to greatly affect me and I asked the doctor at my last
appointment (professor of dermatology) if this was an emotional response to my lupus rather than a physical
one because my lupus is cutaneous and not systemic, but he told me that it can be a systemic reaction in that
way. Does anyone else suffering only cutaneous lupus have other manifestations?

I know I am on the mild side of lupus and I am thankful for that and my heart goes out to anyone suffering so
severely but I really feel like this lupus has held me back in life. I don't think people really understand when you
turn down social events because you are concerned about the sun and I am sure some people think that it is something
that is in my head. I disguise it well with makeup and the plaquenil keeps all at bay so I sometimes get told "just get out
there and get some sun..........that's what you need".

It is comforting to know though that I am not alone in dealing with lupus and I look forward to reading all of the info
I can on this site.

Andrea

magistramarla
01-02-2012, 09:13 PM
Hi Andrea,
Welcome to WHL. You will find that we have quite a few Aussie members.
I currently live on the coast of California. Luckily, we are fairly far north in CA, and the sun isn't overwhelming. We'll be moving back to south Texas in a year or so, where it is extremely hot and sunny. I really dread that, since the heat and sun really slow me down, too.
Plaquenil works well for me, and I haven't lost hair because of it. The different meds really affect all of us differently.
Hugs,
Marla

tgal
01-02-2012, 09:56 PM
Hi Andrea! Welcome to WHL!

Please don't ever feel like your disease is "less important" thank one that suffers from SLE. Any form of Lupus can completely turn your life upside down and that is what this site is here for. Welcome aboard and I hope you find the comfort and support here that the rest of us have

steve.b
01-03-2012, 05:31 AM
hi andrea,
welcome to our cyber family.

i am on the other side of our great island.
the sun effects me quite badly too.
i have systemic lupus, with organ involvement.
i also have a few other auto immune issued as well.

plaquinel has been my "god send".

please read alittle about myself, and others by looking at our profile pages.

i am looking forward to getting to know you, through the site.
again welcome.

lucky7
01-03-2012, 03:06 PM
WELCOME!!!! We are here for YOU!!!!! XXXOOO

kim,l
01-03-2012, 08:07 PM
hi andrea and welcome whl i am from sydney i have sle and the heat does affect me it is terrible here today and i am suffering issues so do not think you are alone we are for you now hugs

Yannosun
01-03-2012, 10:46 PM
Thanks all for the welcome :)