View Full Version : Hi All
05-09-2008, 02:19 PM
Just wanted to say hi and that I am new here. I have been diagnosed with SLE for five years now. Just took myself off Plaquinel due to some side effects. I was really looking for support because my husband just doesn't seem to get it, I really don't have a support system
05-09-2008, 03:37 PM
Welcome to our family. I understand how difficult it can be when the person closest to you just does not seem to understand what you are going through. There is an article that we've been sharing for several years now, it is called
"The Spoon Theory". It does a good job explaining Lupus to our friends and family. Here is the web site: www.butyoudontlooksick.com
Also, our members here have posted some very good articles themselves in an effort to make others understand Lupus and how it affects us. You might want to share some of these with your husband. Additionally, here are some good books that he can read that will help him to support you:
* The Lupus Book: A Guide for Patients and Their Families, by Daniel Jeffrey Wallace - 2005 - 304 pages
* Living with Lupus: The Complete Guide, Second Edition, by: Sheldon Paul Blau, Dodi Schultz - September 07, 2004
* Lupus: A Patient's Guide to Diagnosis, Treatment, and Lifestyle
by: MD, Iris Quintero Del Rio - October 01, 2007
I am glad that you joined our support group. We are here to help you in any way that we can. We will do our best to answer your questions, research information, provide you with support, and to make sure that you know that you are not alone!
Peace and Blessings
05-09-2008, 04:36 PM
:D Welcome Jasmine393
You will find lots of support here as well as information and I'm sure you have lots to share with us too. Looking forward to you posts.
05-09-2008, 07:10 PM
Welcome jasmine 393,
This is a very close supportive group. I hope you stay and chat.
I can completely understand where you are coming from. My husband won't read books; though understands the disease but also thinks some of it is "in my head" from reading other auto-immune books. Though labs and tests are black and white.
Though, I can't remember a darn thing from any of them. I finally gave up reading because I forgot everything that I read and would have to start over from scratch. Very frustrating to say the least. lol. The memory is just not there anymore.
It's hard to fight this disease and also understand that there is not a lot of support from my spouse. I don't think he truly understands; though he really fears the future and what may happen. I can't quiet the fear; I can only tell him that I will fight to the end. Live one day at a time and enjoy it.
05-10-2008, 06:04 AM
This journey teaches much about oneself, including how to find that inner strength to press on when it seems that no one else is around to lend a supportive hand. The good news is, now that you have found this site, you will always have support...day or night, rain or shine. Welcome.
05-10-2008, 08:42 PM
Welcome Jasmine393, you've come to the right place! I'm sorry that you are so alone. There are so many people out there that just don't "get it" but you will not find that here. We are all here for you whenever you want. Welcome again!
sick n tired
05-17-2008, 07:01 AM
Sorry to hear that your hubby is not very supportive. Many here have similar problems. My hubby wasn't there for me until last September. That is when the lupus diagnosis, came in and he started getting scared. At the time I was having issues with my liver, too. He is much better, now and tries to understand.
You need to get to the site that Saysusie was suggesting...the spoon theory is a great way to explain how you feel. I ran it off and gave it to my family and friends.
05-17-2008, 12:00 PM
Welcome, I am new here too. I have found this to be a supportive community. I am so sorry to hear your husband "doesn't get it". It is very hard to have any illness and not have those closes to us understand or attempt to understand. I hope you find this community a place to come and find others that you can "talk" with.
05-17-2008, 02:24 PM
Welcome, Jasmine393. Sorry you have no support system at home...that's so hard. My husband does what he can to be supportive, but there is really no substitute for talking to people who honestly know what you're experiencing. That's what you'll find here. Glad you found us!