Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!
In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!
It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.
hey everyone, i just wanna say thank you very much to all of you. Your support meant a lot to me. I was diagonised with sle last year when I was in my high school, and those were the darkest days of my life ( till now), but thanks to u guys who made me realise that i am not the only one, so I better stop complaining and accept myself as I am. No more suffering from depression due to health issues!
You're so welcome, april. That's what we're here for.
april said:
hey everyone, i just wanna say thank you very much to all of you. Your support meant a lot to me. I was diagonised with sle last year when I was in my high school, and those were the darkest days of my life ( till now), but thanks to u guys who made me realise that i am not the only one, so I better stop complaining and accept myself as I am. No more suffering from depression due to health issues!
Is there anybody else out there who would like to say something positive about this Ben's Friends support site? What has Ben's Friends meant to you, or done for you?
We'd love to hear something that we can share with the people who support us financially during the annual fundraising drive. Just a few words will do!
I was diagnosed with SLE 27 years ago and the best advice I ever got from one of my Hospital specialists was stay out of the sun as much as possible, wear sunblock and long sleeves everyday, (UV lighting is very bad too ie: florescent lights ) and get plenty of sleep. This advice has served me well all these years allowing me to be drug free and passing my annual check ups with flying colors.
wow, i didn't knew that living drug free is even possible.
Maggi-Mae said:
Hi April and welcome to the group.
I was diagnosed with SLE 27 years ago and the best advice I ever got from one of my Hospital specialists was stay out of the sun as much as possible, wear sunblock and long sleeves everyday, (UV lighting is very bad too ie: florescent lights ) and get plenty of sleep. This advice has served me well all these years allowing me to be drug free and passing my annual check ups with flying colors.
I have lived the life of a "vampire" only the the recommended 10 mins a day in the sun to get my dose of vitamin D,, We have very high UV rate here in New Zealand..
When I used to take my children on our annual holiday to the lake I would wear tons of waterproof sunblock, a iarge floppy hat and a black muslin long sleeve shirt over my swim suit when I took them for a swim, probably looked as funny as a fit but I didn't care, I love swimming and I didn't want my kids to miss out because of me.
I always make sure I am well covered when outside and use sunblock 365 days a year, on the plus side everyone says I look much younger than my age. When I do get a flare I go to bed for a few days and sleep it off.
I learnt early to respect my SLE and I think the payback has been invaluable and well worth it.
I want to say I am NOT recommending that any one go against there health care providers wishes this is just about me.
april said:
wow, i didn't knew that living drug free is even possible.
Maggi-Mae said:
Hi April and welcome to the group.
I was diagnosed with SLE 27 years ago and the best advice I ever got from one of my Hospital specialists was stay out of the sun as much as possible, wear sunblock and long sleeves everyday, (UV lighting is very bad too ie: florescent lights ) and get plenty of sleep. This advice has served me well all these years allowing me to be drug free and passing my annual check ups with flying colors.
I’ve been living with SLE now since 2008 and this disease as certainly change my life with aching joints not being able to be in the sun taking a great amount of meds and even losing vision in one eye. But 3 years now I decided to turn this disease around and have it work for me I started working out running lifting weights and going to gluten free diet not only did I loose weight but I don’t hurt at all and and Dr says I am in complete remission .
the aching joints I do have and have been contemplating going gluten free as I have been advised that if one has an immune condition one should be on a gluten free diet,
I must dig out my bread maker and get some gluten free yeast if there is such a thing. Here in NZ a small loaf of gluten free bread is a horrible little brick costing $8-. I have the gluten free flour.
.I never take pain killers, just put up with the aches which have got worse since menapause. I too have started going to the gym got to keep those joints moving. .
chelle said:
I've been living with SLE now since 2008 and this disease as certainly change my life with aching joints not being able to be in the sun taking a great amount of meds and even losing vision in one eye. But 3 years now I decided to turn this disease around and have it work for me I started working out running lifting weights and going to gluten free diet not only did I loose weight but I don't hurt at all and and Dr says I am in complete remission .