Sticky Blood-Hughes Syndrome Support
8,095 members8,332 posts

First Timer offers thanks

I have followed postings and questions for a little while but felt it was time to thank all those who make regular contributions. You have really helped me understand the condition better and stopped me thinking all these symptoms are in my imagination. I feel more confident discussing my care with doctors and asked work to consider reducing my teaching load to part time ( they agreed ). I would not have got to this point without the advice available. There is a book called Emotional Equations by Chip Conley and one equation is ANXIETY= Uncertainty X Powerlessness. your contributions have reduced my anxiety by removing uncertainties and giving me confidence to take back control of my life . My condition is not stable yet but I still feel much better . Thank you and keep posting I am sure there are many other silent readers like me.

10 Replies

So glad, Ally, that you think all of us have made a difference for you. Someone has helped all of us at sometime or other, giving some experience we would like to share. Great that you felt confident to tell your employer that you need a change to your teaching load. I too had to do that, when I was having probs. Even now I enjoy tutoring children so much. I must have a look online for that book- it sounds great. I have bought many lupus/APS books- though I've found them in public libraries too.Love my reading- just won a book on a publisher's website today, with a 25 word resume of it. Just bought my first E-eader finding all about it. So pleased that you are discussing your medical history etc with your docs. Very hard here in Aussie as most don't know Lupus/APS. All the best with your progress


I am really pleased that all the support and comments have helped you.

I don't know what I would have done if I hadn't been in contact with fellow Hughes sufferers.

We all try to support each other.


Thanks AllyB - it's good to get feedback especially when it's so good :) I think your ANXIETY equation is an excellent model to be applied to many areas of life! Thanks for taking the time and courage to post yourself.


Hi Ally, glad we have been some help for you :)

nice to hear from you, we are a nice friendly bunch & will chat anytime you want us to or try to answer questions, give advice & support where needed.

Hope you are ok & we'll chat again......:)

Sue xx


doesnt these comments just make it all worth while ;-) i too like the Anxiety equation and feel very blessed to be part of this site ps all sorted now for the national patients day!!! be fab for me and hubby to meet you all xxxxxxxxx ps the picture is my daughter not me lol i should be so lucky at 48!!!! so i might have to wear a tee shirt saying rachels mum or perhaps there will be badges soo looking forward to the day xxxx


now i thinking of that sketch from mrs browns boys about badges ;-) it cracked me up xxx


if you are feeling like you need a laugh go on u tube mrs browns boys (forgot the badges) xx



So so glad you have gotten some insight and validation from here. I find that the more I open up...the more I feel better about what has happened with APS.

The things that we all read and post here are first hand experiences and that is a valuable thing to all of us.

Good for you for on taking ahold of this!!! I wish you the absolute best!!



Hi ally

welcome and glad you found the info and support useful. I love your equation to, to beg Hazels saying 'knowledge is power'. i think we are all stronger for sharing and knowing we are not alone.

Thankyou for posting, we here when you need us and will help if we can.

Take care gentle hugs love sheena xxxxxx :-) :-) :-)


Really great news, your progress, and thank you for taking the trouble to write it up on here. Every posting is useful and we all learn so much off each other. Best wishes. Mary F x


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