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I was diagnosed with mild lupus a couple weeks ago. I'm taking my medications and trying to get sleep but feel overwhelmed. the joint swelling and pain is getting better but I'm still losing hair and feel really isolated. I feel challanged but am looking forward to the support on here.
07-02-2009, 08:57 AM
Everyone is definitely supportive here, I look forward to talking to you guys everyday. The symptoms of Lupus can be discouraging sometimes but they do get better and I know how you feel about the hair, I love my hair and it has fallen out few times but it does grow back. Welcome to the group !!! Big hugs and smiles.
07-02-2009, 09:02 AM
Hello n welcome.So glad you found us.Everyone here understands you and at any point ask any questions,read the 'stickys' which are full of the info you need right now.We are all here for you to support you through this.We have fun too in the arcade or in the social groups... click community then social. Just take it slow,know that we care n will try to help and are always here when you need us.
LOts of love Amanda.x
07-02-2009, 09:07 AM
One of the things that you will find here is that you are not alone! This is a group filled with people who are understanding, compassionate, and very informative. So many have dealt with the hair loss, as you have. And it is true, your hair will eventually grow back. You will also find information here about how others have dealt with their hair loss and suggestions that they have provided to one another.
I know that it can seem overwhelming and we are here to help you deal with your feelings about having this disease. You will find that there is always someone here when you need a question answered or just need to talk!
I am glad that you found us and that you decided to join our family.
Peace and Blessings
07-02-2009, 10:25 AM
Support? I have some, we have some...Amy!
Even though it is cyberspace, you are not alone as you've seen already...head hugs..we're here, Amy. We are a pretty active family here, so it won't take long to hear from someone when you post. We have the Private messaging feature...Click on a name and it asks if you want to send a PM...there are blogs...game competition. Post on another profile page. Many avenues to chat up with one of us...
Hugs and love,
07-02-2009, 10:40 AM
welcome to our world-wide family of the sky. As you can already see, there is a tremendous amount of compassion here, and someone is always available when needed.
FYI....my dr. has me on 25 mg of folic acid per day....this is supposed to help with mouth sores and hair loss. Before starting the folic acid, I had experienced times of sigificant hair loss, especially when i am in a bad flare, but it does gow back. Now, i go through periods where the hair seems to get thin, but then thickens back up.
Browse around the different threads, ask any questions that you might have, and feel free to jump in whenever you want.....we always welcome new insights and perspectives.
Welcome amy to this wonderful site.
i have hair loss every shower have to clear the drain or water won't go down.
i also take folic acid, vit.d and vit. b12 don't know if there working but i do feel like i have more energy, fatigu not so bad.
you will meet all kinds of people here some giving advice some wanting to vent and some asking. so i hope to see more of you on this site.
just remember even though were not face to face you have a support system.
07-02-2009, 01:17 PM
HI AMY!!! Here you have truly found a place where you belong. We all have been through the scary and not so sary hear and even if we can't answer your immediate question you will come to know we all have very big EARS! Weclome glad you found us
07-02-2009, 02:08 PM
Welcome to the site. Sorry to hear you were diagnosed with Lupus and have to endure and live with this now BUT I have great news...you have come and found a great place for support, understanding and a bunch of cyber friends who more than anyone else know exactly how you feel and are going through. I posted once my hair fell out and was thinning....so terrifying and I broke down. People immediatly posted and assured me it would grow back and here I am to tell you it did. The pain/flare ups suck...they come and go and come and go. Like nothing you have ever felt or wanted to feel but it gets better. Just try to be positive and think of healing and remission...mind over matter!
07-02-2009, 02:58 PM
Hi Amy and welcome. (((((hugs))))
07-03-2009, 10:16 AM
hi Amy! Welcome! :laugh: