View Full Version : Hello!
12-18-2011, 05:43 AM
Hello! My name is Steph and this is my first post. (I hope I am doing this right!) I was just diagnosed in October of this year with Lupus (obviously) and Psoriatic Arthritis. I was so relieved that someone in the medical profession FINALLY believed me (as if I could make up the rash across my face and the swollen joints). I think the hardest part for me right now is two-fold, not having the stamina to do what I used to do and the forgetfulness. I forget whole conversations that I apparently have had with people. I will be in the middle of something, and have no idea what I am doing or why I am doing it. It is really scary sometimes. It is hard to explain to people who don't live with this. They say "oh, that happens to me all the time. I must have Lupus, too" or "you are just getting older". I am 36 -- borderline ancient, huh? :) So, anyway, I am glad that I found this website and look forward to reading about others who can relate to what is going on with me.
Linda From Australia
12-18-2011, 05:55 AM
Welcome Steph, and I agree with you, it is so hard to deal with some of the problems related to Lupus when first diagnosed. You will learn some strategies to cope with difficult moments. Just read through some threads or ask some questions whenever you want.
12-18-2011, 06:24 PM
Welcome! The more you are informed the more comfortable you will feel. One of the biggest problems I had was explaining to people that I didnt have the energy to do things. I can share with you something I have gathered from this group which is the best type of support you will get anywhere. I also suggest that you search on the web for these three words and read about the story of how a woman with Lupus explained to friend how it feels ... "spoon theory lupus" . Using this explanation which I sent to family by email has been of so much help. Hope you enjoy! And welcome,
12-18-2011, 07:22 PM
hi steph and welcome.
i am glad to see you have jumped in,
and have started commenting on threads.
many of us call this our cyber family.
there are people here from all over the world.
and we all go through most of the same issues.
12-18-2011, 09:34 PM
Welcome to WHL. You have described some of the things that many of us here are very familiar with.
Look for the thread about Brain Fog - you'll see how common it is for all of us.
Make yourself at home here and read through the threads that interest you - you will learn a lot.
I'm glad you found us.
12-19-2011, 05:53 AM
Hi Steph, ( borderline ancient) lol.
Unfortunately most of us have been through the same thing as you, people not believing us ot stupid comments, like " you are to young, you look so good, it can't be that bad", but after a while you learn to ignore these comments.
Even though I am in alot of pain, most of the time, my worst symptom of all is brain fog, because I can't hide it and it makes me feel so uncomfortable. Most people look at me, like I am weird. I hate those looks. Some days are so bad, that I don't want to talk at all. The only place I can feel at ease with the brainfog, is at home with my husband, he helps me when I get stuck in the middle of a sentence.
12-22-2011, 06:14 PM
Welcome to this site. I think the hardest thing for me to believe is that I am tired within an hour of doing things. We recently had to move to my mom's to take care of her and by the night my legs and feet were on fire. I am going to be 50 in April but I still have a hard time adjusting to the pain I go through. Hang in there and welcome!!!!
12-22-2011, 10:50 PM
hi steve welcome whl we all know what you are going and are here to help and listen.
12-23-2011, 04:58 PM
Hi there! I am fairly new too...diagnosed around the same time as you.
It is tough telling people. Most of them don't really understand, even when they want to. I guess it's not really their fault - I probably wouldn't understand if I weren't living it. But it can be annoying as hell.
And it's funny - yeah, everybody is like "Ooooh maybe I have Lupus too!" - I am starting to see why doctors are so skeptical and reluctant to diagnose it, and why it's so hard to get an appointment with a Rheum. It must be a difficult diagnosis to make, because the symptoms are things everybody experiences sometimes - aches, and feeling yucky, and being tired. It's just a matter of frequency and degree, I guess. And of course the bloodwork is not always a good indicator, or definitive of anything in particular. I wish they could come up with a more specific test - maybe then people could get treatment sooner.
Anyway, welcome. In the short time I have been here, it's been really useful to me. People are very kind here - and funny to boot!!!!