View Full Version : Hi I'm New

12-27-2006, 10:24 PM
My name is Robert. I was diagnosed with SLE in 1991. I have been in remission sence 1993. I recently started feeling like shit over the past 2 years or so. I lost my last two jobs from missing work due to fatigue. I'm not working now and I am filing for disability. My stomach has been giving me problems for about the past 2 years as well. The stomach issue is new for me. I've been on Prednisone since 1991 as well as off and on Coumidin, Atenalol, Lanoxin, Cellcept, Hydrocoloquinine, Plavix, Imuran, Asprin, and what ever else I can't rember at this moment. I'm worried about being denied for disability. I have the same old symptoms. Massive fatigue, muscle weakness and aches, headaches, lightheadedness, brain fog, trouble concentrating, stomach pain, fever and chills, etc. etc. I was doing ok with the lupus for the last 10 years or so. I am really fustrated and depressed as of late and don't like living like this.

12-28-2006, 05:06 AM
Hi I'm new to this forum too. I read your post and know exactly how you feel. It's frustrating to quickly transition from being active and healthy living normally, to being crushed down by a hammer and prevented from doing what you are used to doing. Try to keep your head up, but pay close attention to your symptoms, and take the meds religiously. As for me, even with taking meds religiously, Lupus managed to destroy my kidneys 4 years ago, putting me on dialysis, and disabling me from doing what things I used to love doing. If you need to vent some more, you are most welcome to reply.

12-28-2006, 09:22 AM
It's very nice to "meet" you even if it's just in cyberspace. A lot of us certainly understand the work issues - it's very hard when the symptoms are so unpredictable and you don't know how you will feel from day to day. One of our moderators, St. James, is a retired veteran, and he often advises people on disability issues - if you look for one of his posts and send him a private message or e-mail, he is probably the best person to advise you there. I would tell you that if you aren't working right now, you should apply as soon as you can, because the amount of money you may eventually receive in benefits is based on the amount you've paid into the system. So if you are out of work for a long time and then apply for SSD, you might receive less in benefits. Applying for SSD "freezes" the earning periods used in benefits calculation. Some people think you have to be out of work for a year before you can apply for SSDI, but this isn't accurate - the standard is whether the condition will reasonably cause you to be unable to work for a year or longer.

I know it's frustrating and painful when you want to work and can't. I hope you will find this forum to be a source of comfort and support just as I have.

12-30-2006, 02:13 PM
I am new, but not new to Lupus.
Looking for support and friendship with those that understand.

01-08-2007, 01:04 AM
Hi Everyone, I am new to this site, I have SLE, Fibromyalgia, raynualds back problems and a small hole in my heart picked up while having a cat scan :roll: it took 4 years to get diagnosed after asking for a second blood test I was finally send to a rheumie who used to sit and ask me what I wanted him to do for me :roll: after 18 Months of this I asked for a second opinion the second rheumie siad I ahd a lupus like illness, I had a bad rash come up after around 2 Months of seeinf him my GP put me onto a higher dose of steroids and asked for an emergancy appointment which came three weeks later!!! my GP was furious and reffered me to the Lupus unit at St Thomas` in London I was going twice a year but now I see them once a year and the local rhemie who had now decided I have SLE I see once every 5 Months, been quite a struggle I am now injecting methotrexate as taking it orally made me have thrush in my mouth and hair loss also on the usual plaquinil, anti inflamitries, tramadol for pain, reducing steroids now, loking forward to getting to know you all, Jenny from Poole in Dorset

01-08-2007, 09:15 PM
Welcome - it's nice to have so many new people posting.

I hope you will all find this site as supportive and helpful as I have. It's nice to know we are not alone indealing with this disease.

01-09-2007, 03:52 AM
Welcome to all of you who are new. This site has been a Godsend to me, and I think you'll find it so as well. It's more than frustrating to be limited by disease. But there's much that can be done to minimize the affects of Lupus and to live a full life. I've learned a lot from this forum, and I'm reading everything I can get my hands on. Take your meds, find a good doctor (if you don't have one) and stay informed. It can make a difference. We're here to support one another, so log on often!