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12-01-2012, 01:28 AM
Just introducing myself as I am new. I am a 36 year old female who was diagnosed with SLE about a year ago. Official diagnosis: SLE primary, Sjogrens Syndrome secondary with Fibromyalgia. I also have Spinal Stenosis, Depression, and Anxiety. The last three I have experienced for years but are now exacerbated by the autoimmune issues. Saying this disease hit me like a ton of bricks is an understatement. I went from being go, go, go to bed bound for two months straight last year. I worked full time, was taking 3 classes a semester, raising two kids...life was cruising along and then WHAM! I think I had symptoms for years and chalked it up to stress. It was manageable until it hit me last September and since then it has been a treacherous uphill battle. I missed five months of 12 from the time this got so bad. As of August I had to go out on long term disability as it has gotten so bad.

It is difficult as no one in my life really understands what I go through and I've had multiple people accuse me of exaggerating my issues. I decided it was time to find a support network outside my social circle as I am not receiving the support I need. Life is a struggle daily, as it is for many, I know, but those who cannot understand what its like will never be fully empathetic to my life. Hopefully I have come to the right place and can find some of that support that is so lacking in my life! So thanks in advance.

12-01-2012, 01:38 PM
This is a place to find folks that understand. Welcome to WHL forums. There are several "stickie" posts at the top of most sections of the board, and somewhere in one of those stickies is The Spoon Theory, which is one way of explaining life with lupus, or other systemic issues.

What meds are you on, and what doc's do you see? How old are your children?

12-01-2012, 06:45 PM
Welcome to the WHL family! I hate that you have to be here but glad you found us since it is. You have stumbled onto a wonderful place filled with fantastic, caring people who will be here to support you on this journey. Weekends are rather quiet around here but it picks up during the week. Please make yourself at home, ask questions, vent or simply read. Just know that we are here and that we do care

12-02-2012, 07:52 AM
unfortunatelly we find it quite common that people who do not have serious pain on a daily basis, just cannot comprehend what we go through.

it is beyond there comprehension to be able to grasp what we live with on a daily basis.

welcome to a group of people who do understand.

12-02-2012, 09:01 AM
You have definitely found the right place for support from people who understand.

It has been really helpful for me to have the folks at WHL for emotional support and as a source of advice. I hope you find this place as useful as I have!


12-02-2012, 10:30 AM
Welcome, and I hope you find this a helpful community. There's lots of great information here on how to cope with day-to-day life with autoimmun disease.

12-02-2012, 03:54 PM
Hello and welcome to our family. I am so glad that you found us and that you decided to join us. This is the place to be in order to find understanding, compassion, and information.
Many of us live with pain that never ceases. I often say that I would just like one 24hr period where nothing was hurting, no nausea, no fatigue, no migraine, no weakness. Just one day where I could feel like a normal person...then I have to realize that this is my normal and I have to find a way to find some joy in this life that I have.
It is difficult when those who do not deal with our kind of relentless pain and debilitating fatigue choose to judge us rather than accept and support us. But, please know that we are here to accept and support you because we DO understand.

Peace and Blessings