I was diagnosed with Lupus when I was 29, I am now 56 up till 8 years ago I mostly managed my disease on my own. The stress of my second marriage break up threw me in to a fit of depression. The Lupus decided to get me then too extreme aches and pain to the point where I could hardly walk down town. I would feel as if there was a huge elastic band around the tops of both my legs dragging me backwards I would have to fight this. It was dreadful I feel I am recovering from this a little bit everyday although sometimes I think I am so well but it only lasts a day at the moment. Then I am back down there. I am trying hard to fight that now. For a long time all the fight had left me, but now I realise that you need to fight or it will be the end of you. The Lupus attacked my liver last year, I was put on prednisolone. This has stemmed the deterioration of my liver and it has gone back to being good. Now it is just a case of pacing myself to try and keep me well.
Hi Emeliesmile! Welcome to WHL. I am so glad that you have joined our WHL family. We have such wonderful members here but it is always nice to have people come who have battled this disease successfully for a good length of time. As you know so many see this as a death sentence when they are first diagnosed (or waiting for a diagnosis) that those with your experience always make them feel better.
There is wonderful information on this site so please make yourself at home and look through the old threads or start new ones if you wish. I look forward to getting to know you!
Hi and welcome, like you I've been battling this for a long time, I'm 62. I just wanted to say welcome and. send you good thoughts and plenty o f cyber hugs
Welcome to our large family at the WHL.
Sorry to hear you've had years of battling with it but depression apparentley is the worst cause for kicking it off more and i know how you feel going quite a few days ok then downhill again out the blue, that's the main part of this Disease that makes so many of us so ill.
I'm realy happy though that the prednisolone as slowed the progress of your liver down and there's so many threads here for you to view and see what so many of us suffer like yourself.
I was born with it and felt minor affects for the age of 5yrs old, then more hit me at 14yrs onwards and now at 42 it's loving my body but i was not diagnosed with it till 2009 which realy got me angry with years of suffering with alot of ailments connected to it and there's not a day go by where my body just aches.
I wish you all the best and it will be nice getting to know you.
Thank you all so much for your welcome it is so good to hear from people in the same place as me it can be so difficult sometimes when there is absolutely nothing to show how ill you really feel to make people understand. Even my Doctors thought there was nothing much wrong with me because I had dealt with it so long on my own, it was only when it attacked my liver that they realised some of what I had been going through. I look forward to getting to know more of you in the near future.
Originally Posted by emeliesmile
Oh that is a story that is all too familiar! So many of us fight our doctors for a diagnosis while they look at us like we are crazy until something goes really wrong (and sometimes long after that). I believe that one of the reasons we find such comfort here is because of exactly what you said; it is so nice to find a place where people are in the same place that we are and understand exactly what we are going through. We are a family here and we are glad to have you as a part of our WHL family *hugs*
Originally Posted by emeliesmile
I just wanted to say hello, and welcome to WHL.
I, also, wanted to welcome you to our family. You have already met some of our members and seen how understanding, compassionate, and giving our members are. As Tgal mentioned, your story about your doctors not believing you is much too familiar to almost all of us. It is partly for this reason that we must never give up the fight. I know that it can become frustrating and tedious to have to fight everyone and everything at every turn. But, we have to become our own advocates because no one knows our bodies better than ourselves. We are the ones who must live with and manage our disease and, with the right medications, the appropriate lifestyle changes, and vigilant management of our health, we can achieve some form of normalcy in our lives with this disease.
One of the things that we do here is to encourage you to not give up, to provide you with information and support to help you to continue the fight, to let you know that you are not alone, and to comfort you when you feel lost, alone, and in the throes of a flare.
I am so happy that you found us and that you decided to join us. We are here to help you in any way that we can!
Peace and Blessings
Hello Marie, I am glad you have found this site. There are quite a few members who are also on their own have have suffered as a result of their marriage breaking down. As you begin to read throught the threads and posts, you will find other people you can associate with and form some good friendships.