Now that Benlysta has been approved, we are in a holding pattern, waiting for doctors and insurance to come together on a treatment plan.
I am also in a holding pattern in terms of this site. I just don’t have the time to dedicate to maintaining this, but I hate to just drop it and let it dissappear into internet history. I’m tired of paying for it. I’m just tired in general.
Hey there… I happened across your page awhile ago. You said that you don’t have time to update the site and are tired of paying for it… well, what would you think of transferring the domain? I would pay for it and update it at times with my own stories and thoughts (I was diagnosed in December with Lupus & Sjogren’s… I’m a mother of 2.)… and you could keep the login information and post your wife’s stories to it as well. Just a thought. How much is your hosting per month – probably about 15 or so? You can reach me at the email address provided… I hope you’re both well.
If you think your site is helping a need or group of people then don’t quit. You may be encouraging more people than you realize. We all have little life interruptions that sometimes
cause us to get frustrated. Your wife needs you as her cheerleader…even when everything looks
bad. Just keep giving her words of encouragement. Words are powerful. Take time and pray. Tell God about your frustration and he will guide you.
There are other people with Lupus doing worse than your family. You can help others.You can always go to a site like blogspot or other free sites.
I just found your site when I was searching for info on Cellcept not working. it seems like such a good place and resource. Even though I’m brand spanking new here, I’d be willing to help! There are so few sites that are truly supportive for those of us who are dealing with Lupus.
We are on sort of death row from lack of understanding and discrimination. We need emergency financial assistance or we will die in agony. We really need a fresh start and a new place to live. Time is running out quickly we need some philanthropic aid. We are a nice middle aged couple married for more than 30 years stricken with a very severe case of lupus and arthritis. We worked very hard when we could now we are almost shut ins and our home is falling apart around us.
Anyone out there wish to save our lives?