My name is Tish, and I have been seeking online Support Groups. I have had Discoid Lupus,and Chronic Fatigue for over 10yrs now! I've lost a third of my hair permanantly,with very bad scarring of my head, and some on my face,left from Malar Rashes,and lesions,I was 35 when I had a depravera shot, within a few days, I had a rash across my nose and cheeks, and lesions on my face, everyone assumed I was having an allergic reaction, so I did not know it was Lupus,and did not know about the damage that sunlight, and uv lighting was causing me. I lost my job, and ended up with no medical insurance, so got my care at a charity hospital, and it took over a year to be diagnosed, by then alot of permanant damage was done. I was very angry in the beginning, but have learned to be creative,and grateful for all that I do have! I wear hats, scaves, and wigs on bad days, but prefer to glue hair on b/c I look normal when I do this, but it is an long and tiring process, which last about a week or so. I was diagnosed with Raynauds about 5 yrs ago, my toes,fingers,hands,and knees, pretty much stay the color purple, not much circulation in my extremeties. Then 2yrs ago, I got my 1st positive ANA Test, so now I am Systemic, and am experiencing new limitations,and symptoms, I have only lived here since June of 07 and have a new Rheumy, who diagnosed me with Fibromyalgia, this last year, Boy! they just keep comming! anyway, I still try very hard to remain Positive! I pray and meditate every morning, and have started therapy again,I am on Cellcept,Prednisone,lyrica,cartia xt, clonidine,ambien,mscotin,lortab. Oh and I do have hypertension, so I usually feel like an exhausted nervous wreck. God sorry I know I was just supposed to introduce myself! Tish

Post edited by: ladycarter, at: 02/06/2008 08:37

I wish I could offer you some insight or maybe something more than just a prayer...but I'm finding slowly that sometimes prayers, hugs and the like make more difference then all the advice in the world. I just found this group myself so I can't even add comforting words abt the group as a whole, but what I can say is...I think I've found a place here that I don't feel so much like a freak of nature. I've just received my dx and haven't even gotten so far as to find out to what extent or how much damage has been caused or if there's more dx's to come. I go to the Dr's this week so hopefully I will atleast receive some kind of idea. In the meantime, after all I've been thru in life...all I can do is HOPE. So, I know this seems bold coming from a newly dx'd hopefull stranger...But do hang in there and remember, keep your chin up and even on your toughest days have HOPE and FAITH for better days. They can and will come.

Sending a hug if you want it...

Thinking and praying for you (if that's ok?)

Sabe

jcbrooke3

I don't take things for granted the way I use to,like family,friends, support, and most of all Time! and I try very hard not to sweat the small stuff, and always, always, keep a sense of Humor! Thanks much for the Hug, and I am here for you also, if you need to share, vent, or just need a hug! Tish

I signed up in this group because I sometimes feel lonely although my family is right here in the house with me. I know they are tired of hearing my complaints. Thanks for sharing your experiences with Lupus. I have lost a lot of hair, it is so-o-o-o thin on the top that I joke about it saying folks can even see my thoughts.

Reading your post has reminded me that I am not alone in this ocean of pain I live in.

May God ease your pain and bless you with more humor than pain.

Evelyn

Post edited by: Gothamcity, at: 03/02/2008 17:47

It does always seem that when I go to appointments, there is something wrong that they discover. Stay POSITIVE and God is always there to watch over you. I also agree with Evelyn that it does feels lonely being the only person in the household to have Lupus. So I am happy that I can communicate with people who share the same experiences as me.