To read other peoples thoughts, feelings, symptoms, worries and feel genuine care has been such an eye opener. For once in my life I don't actually think I may be mad, or imagining my symptoms.
So to all in this group I would like to say a very very very big thank you, for your time, your responses and for caring enough to belong to a group where we help each other, and by doing so help ourselves.
Thank you
Lesley
That is very nice to know Lesley, and it is good to have yet another voice on here, we are nearly....... 500 members, all of us with a tale to tell which can in itself feel refreshing, in terms of getting history off your chest with a blog, educating others and also the comparing of notes and the asking and answering of questions etc etc. This greatly enhanced by the umbrella of the Hughes Foundation charity, and it's associated work and of course the wealth of medical articles or newspaper articles. A big welcome to you as well. Mary F x
Thank you Lesley. I agree, it is very good to know that others have similar symptoms and that one is not alone or mad. x
I have spent at least the past 30 years but in particular the last seven being looked at as if I was mad by the medical profession. Their ability to deal with people they don't understand, can't cure or can't fit into a pigeon hole is beyond belief and their normal reaction is to just dismiss and move on.
Being dx with APS is such a bitter sweet experience. On the one hand you finally know what your problem is, you feel vindicated and want to punch all the - - on the nose who have treated you so badly. You also have the realisation of what you have to deal with for the rest of your life which is also really scary.
On the other hand you suddenly meet the most wonderful, caring people. Doctors and other patients with the condition and this forum which makes you suddenly feel human again, despite the demon thoughts that are never very far from the back of your mind.
People who don't have this condition cannot possibly understand what its like to live with it. How can we forget about it as they tell us to when we are popping pills, checking INR's, sticking injections in ourselves everyday not to mention all the side effects that we get. If we cannot share with others we would go mad, so I too thank every one on here, all those faceless names that pop up and answer each call for help. I can't wait for May so I can meet some of you in person!
All i can say is the members make the group and we have some fantatsic memebers
Hi lesley
Thanks for your comment hon.
This site has been life saver for me. So many lovely people, so much in common. Made some lovely friends on here and feel like so many people got my back. Good to know we all here for each other.
Definately not wish Aps on anyone, but feel lucky to know you all.
Take care gentle hugs sheena xxxxxx
See peoples - this is why I thank you all - what heartfelt responses!
It's strange you know, when I was diagnosed, my lung specialist said ... there you go Lesley, we have the Dx, we know why your lungs are not working very well (30% funcionality), life on warfarin but you will be fine now ..... My sister who is a nurse, said ...Lesley you are lucky, now you know it is 'only' APS you're on warfarin you will fine now, as it only causes clots and miscarriages, well you've had your miscarriages, and won't clot now you're on warfarin ..... however, from the first day I joined this wonderful group, I read peoples questions, their answers and thought, hang on, but I feel that, I have that, etc etc - It seems there is far more to APS tan most people understand.
Can you also tell me what this patient forum is? where it is? and the date of it?
Many heartfelt thanks
Lesley
According to the Poll at the side here its on the 16th May and I believe its in London. As I have not been dx for very long I don't know about last years so hopefully Kate will come along and explain all.
Just block the date out as I have!
Hi, to all you wonderful, caring people out there!
I would like to pass on to you my daughters heartfelt thanks and appreciation for all that you've done for us here in Australia.
We already felt isolated (geographically, at least...LOL) and have previously been struggling to find out anything to help her with APS, but thanks to you we now look like getting to a Rheumatologist.
And thanks to the community itsellf.
She has read many of your posts/comments and is realising that for the first time that she is NOT an alien, or mad and relates to much of what's going on with you all.
Once again THANK YOU.
Wayne L
Thank you
THANK YOU ALL !!!!!!!!!!!!!!!!
Thank you & Merry Christmas to all
A BIG Thank you
