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Discussion Starter · #1 ·
Glad to be here. It's great to see people in the same boat, even though I'm sorry for the reasons we are. I'm an active mom with mild SLE. Been diagnosed for almost 2 years now even though I've had symptoms and positive ANA's for 10 years. Don't you love the insane road of getting the diagnosis? Well thanks for having me and look forward to "talking shop" to fellow hyper immunies.

Alima
 

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Hi Alima and :welcome:

I am sorry for what brings you here too but we are very glad to have you. Take your time and have a nosey around. This is a great site with a wealth of information and support. It's a pretty friendly place too.

Sounds like you are doing ok at the moment - do you have any symptoms and what meds are you on? I take the anti-malarial Plaquinel which has been a huge help to me.

I very much look forward to getting to know you.

Hugz, :hug:

Pam xxx
 

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Discussion Starter · #3 ·
Thanks for the warm welcome Pam, it's great to meet you. I've been poking my nose through some old posts and it seems like a great place.
I have oodles of symptoms, but non too threatening. Get the achies a lot, even though I tan easily(Cali girl orginially) the sun brings out the flares (even my eyeballs get burnt), I get mouth sores, I shake bad sometimes that it keeps me from my side job as a neuro-surgeon(just kidding), get brain farts a lot and my speech gets messed up, my heart gets irregular beats often(sometimes makes me feel faint when it goes on for hours), get pretty anaemic at times, of course I'm always worn out which I find to be the most annoying of them all. As for the drugs I take plaquenil, ultram (I'm allergic to anti-inflammatories!!! is that cruel or what?), prednisone when my body won't get out of bed, cardizem for my heart that beats to it's own drum, and a tylenol pm cause I have a hard time getting into deep sleep. I also take a lot of C, iron, and other vitamins cause they seem to keep me going also.

Again thanks for the welcome. It is very appreciated. Talk to you soon.

Alima
 

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Hello Alima,
I am glad you manage to keep active. My children are older now,but it was hard when they were young.

I have SLE and APS and a few other bits, my 17 Daughter Immi is also on the site sometimes as she has Lupus, APS and IBs, and a heart murmur.

I hate the sun it is very bad for me. California? I would have shrivelled away!

Try to get into the Chatroom sometime, there are some lovely people here.
x Lola
 

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hi alima,, just wanted to say that your post made me smile and today i needed one. i have had this wondereous illiness for 34 yrs now. and almost bit the dust before they got it under contorl. you seem tohave a very good outlook. most of the time i do but i have my monents. being a drancer must be very exciting. and fun. i live in Illinois and enjoy all kinds of music except rap. i just can not get that yet. i also take quite a bit o vit c i think it has kept me from getting alot of the infections they say you are suppose to get
i got ot get some sleep so welcome to the site and maybe i meet inchat some time i also like to get emails anytime. sue:) :)
 

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Discussion Starter · #6 ·
Thank you for the welcome Lola and Sue. It's nice to see others who understand surviving is a way of life and not taken for granted. Autoimmunes run deep in my family too. Sister has Lupus and Chrone's, Mom has Chrone's, Grandma has both, and my great-grandma probably had both since she died of intestinal cancer and always had butterfly rashes. It has only touched the women so far, and I thank God and feel so lucky that I have two boys and that mine is mild.

Lola, what is APS? Is it something that goes hand-in-hand with Lupus? How old was your daughter when she was diagnosed? Such a hard life for so young. My sister was 12 when she was diagnosed with Lupus and degenerative disk disease. Now she is 23 and getting her masters in Special Education to teach at the collegiate level. I'm a proud sister :) She's overcome so much. As for California, I miss it bad. Low humidity and mostly warmer weather all year. Had much less achiness than I have here in Virginia. Plus the scenery on the beaches aren't too shabby... Mmmm surfers.... Ooops I mean gentle rolling waves....

Sue, if you don't mind me asking how did you get so sick? Was it before you were diagnosed? When I was pregnant with my second son I ended up resisting him and my placenta diminished in it's function. I was able to wait to have him until 36 weeks but it was a hard pregnancy full of turmoil and guilt thinking it was my fault. I wasn't diagnosed at the time, but I knew something was wrong with me. I was in denile. Thankfully he is a healthy boy who is too smart for his own good. Yes dancing is great! It really is my saving grace. Keeps me going even when I'm down. I just listen to the music and imagine routines and movements. I have some great students also that help me out in class at times and some great dancer friends that take over for me in my restaurants. If you ever want to hear some great arabic, greek, lebonese, gypsy music I can recommend some great musicians. Can't wait to talk sometime.
 
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