Comments on: Coming Out - Into the spotlight

By: Rosalind

Rosalind — Mon, 16 Jun 2008 21:22:59 +0000

Leslie, the pleasure is all mine. I’m so delighted to be able to share these stories. No two are the same yet there are such common themes to them all that it seems obvious to me, at least, that we need more people researching this, asking the hard questions and coming up with better solutions than we currently have. Rosalind

By: Leslie

Leslie — Mon, 16 Jun 2008 19:42:50 +0000

Rosalind, I just wanted to thank you again for letting me share my story with you. I think it was a hugely important step for me on the road to accepting my illness. I would encourage others to share their stories, as well, if not so publicly, then with those they know that they have avoided telling. I also wanted to add the following, as I’ve been thinking more specifically about my health issues and my specific career choice. I am lucky in that sociology is known for a being a very diverse field. I can research what I am passionate about and not be looked down upon (hopefully). Also, sociologists are known for studying and celebrating difference. I can only hope that when the time comes for me to get a job, I will be accepted with the same enthusiasm that many bring to their own research on marginalized groups.

By: Rosalind

Rosalind — Wed, 11 Jun 2008 15:18:14 +0000

Thanks for sharing your story, Maria. I’m struck that you said there’s a ” lucky theme” here. Popular “wisdom” says “we make our own luck”. I think it’ often a bit of both — but more importantly, it’s what you do when you’re not “lucky”.

Wonder what others think about that?

As for, go get ‘em girl! Amen to that - and I’d add: Keep Working (at it) Girlfriend (what a lead in for my book, Women, Work and Autoimmune Disease: keep working Girlfriend!

By: maria

maria — Wed, 11 Jun 2008 03:23:19 +0000

I found graduate school to be quite a foundation as I embarked on life with lupus - something I didn’t expect at all.

Not only was I going through a divorce with two little girls relying on me, but I had not been in the workforce for eight years, had my health insurance cut off against the court orders, and had no financial means available until child support was enforced. The only option I felt I had was to return to grad school for the student health insurance and student loans that go away if I didn’t make it, yet offered me a means of surviving for awhile.

It was the second year into the divorce proceedings (unfortunately, a long three-year process) when I finally made myself go see a rheumatologist after being dismissed for over a year by my GP. By that point, my kidneys were at 12% functioning - 10% is the point where you need dialysis. I took my girls to Disneyland, came back to school and received my masters in 2006 - I haven’t looked back, except to smile at the ripples from my journey.

I don’t recommend anyone wait as long as I did and my story has a very good -very lucky- theme going right now, which can change any minute, I know. All I can say is that having the distraction and the feeling that I was creating a destiny for myself and my girls on the terms that I instinctively followed was certainly what I needed at the time. I was finally diagnosed with Stage Four Kidney disease and lupus nephritis. I’ve since dealt with severe pain, fatigue, skin involvement, raynaud’s and silent migraines - but the feeling that I can get through it to the best of my ability keeps me accepting the challenges life, and lupus, bring.

I applaud Leslie in her strength and resilience - keep your focus, continue to listen to your body and heart, and go get ‘em, girl!