View Full Version : Hello thanks for the warm welcome
11-17-2009, 12:07 AM
I have had a resent flare that sent me looking for answers. I do not have anyone to talk to about Lupus. Normal people get that 'uh, your crazy' look when I open up. I had an episode that turned out to be pleurisy which is a common symptom of Lupus. When I read that it was like 'oh no not again'. I have been doing well although I am in my early 30's I have had Lupus symptoms since grade school. I had a sever reaction to Penicillin and then had rash/inflammation flare ups biyearly since. They have tapered off and I thought I was finally free. I do not have healthcare or a regular doctor and sick of the time and energy it takes to break one in and convince them I am not crazy.
This rant turned out longer than I wished but I feel I am communicating with people who finally understand. So thanks, and please I would love to hear your stories, helpful hints, and knowledge. :laugh:
11-17-2009, 05:13 AM
Welcome!!! It is really hard to talk to people that don't have this disease because they just don't understand what we all go through. The pleurisy thing sucks! I had a bout of it last for 21 mo. It was awful! I couldn't do anything. it hurt to breathe, move, cough and any other bodily function was horrendous pain. I know how you feel! I think we all do here! I was originally diagnosed with RA. I have had joint pain since I was 6yrs old, but they couldn't find anything definitive in my tests. 9 or 10 years ago they diagnosed me with RA. Now 2009 they find out after my Remicade quit working after 9yrs that it i actually SLE! I have had a difficult time this year. It's a sucky disease that's for sure! We will all get through this together.
I'm glad you found this site! It has been really helpful to me personally, I have made some wonderful friends on here. I am sure your going to love this site too! Take care and hope to hear more from you soon!
tiggerlishus - Heidi
11-17-2009, 07:13 AM
just wanted to say my hiii's as well glad you found us! i'm not feeling very well at mo so have got brqain fog when i'm better i will come back right abit more just wanted to send you my love H x
11-17-2009, 07:45 AM
Yes me too ...hello and welcome and im so glad you are here.We all understand you.Catch up with you soon.
Lots of love
Welcome to our group. I'm Rob, and I was diagnosed with SLE in 2004. Feel free to rant as long as you need to! Some of my rant's could be made into a novel they've been so long!
Please make yourself at home!
11-17-2009, 09:23 AM
hi garynandra, welcome to our "family of the sky"....this is the place to ask questions, vent, share stories, and to make some incredible friends. You have been suffering for so long, and so many of our members continue to search for drs. that don't "treat them like they are crazy". It is extremely expensive and time consuming, so it is understandable that you have become frustrated. Please don't give up, this is your life, it can be better, there are medications that help, but nothing takes it all away. That is why we are here, we are the fillers for lack of professionalism in the medical world, and lack of understanding from the outside world. Call on us whenever you need someone, we won't think you are "crazy".
11-17-2009, 10:45 AM
Hi and welcome i have not been on this website too long but am glad i found it and wondefull caring people who go along with it. You are right no one understands what we go throuhg except those who go through it to. Love bonita I myself have not has pleurisy but from what i heard it is not something i want to have especially when i have asthma also.
11-17-2009, 11:11 AM
Welcome to WHL! We have a great group here.
I know what you mean about breaking in new docs. After a recent move, that's what I'm going through. I started keeping a sort of diary about a year ago. I started the entries from the time that my PCP first started suspecting "something like lupus" in the spring of 2007.
I've kept adding to it every time I see a new specialist, etc and I print it out just before each appointment with a new doc.
I recently saw my new PCP. He read my paper and told me that usually when he sees something like this, he thinks that he might have a nutcase on his hands. However, with what I've got going on, he considered it very helpful. He seemed to appreciate it.
It might be helpful for you, but keep in mind the "nutcase" warning!
11-17-2009, 06:42 PM
Thanks for your responses, it helps to know I can get advice from those who have been there.
11-17-2009, 09:04 PM
Welcome to the nuthouse!
Seriously, this is a great group of people who offer such hope, encouragement and answers when no one else seems to understand or care. No question is "stupid". Chances are, someone has wondered the same thing, just hasn't expressed the question to the members.
12-13-2009, 06:28 PM
Welcome Garynandra, I know what you mean about breaking in a new dr. on this lovely disease, I just recently, last 6 months, moved to Oroville Ca. and have a new rheumy in Redding which is 2 hrs away, he doesn't seem to be very convinced that I have lupus. I had been going round and round with dr's until I ended up in the hospital for 6 days, 3 of them kept pretty much unconcious becaus of the pain I was going thru and they didn't want me schreeming in the hospital, I turned out I had pularisy, I would like to find a good dr. a little closer to Oroville/Chico. Any way you will find good support here, Sincerely Jim.