I found out 5 days ago that I have SLE, I am lucky enough to have a fantastic immunologist that I feel safe with. When he said Lupus I went blank, I simply did not hear much else. Any one out there with some constructive ideas of how to deal with this would be welcome. I am going to a seminar in 2 weeks but I never have had much patients.
Tess, greetings & welcome! For a head start, check out the "sticky posts" (permanent info posts) at the top of the thread list. Reading short & condensed info first, then moving on to more detailed stuff, is a good way to start to understand this very complex condition. I hope you keep posting here, too. Bye for now, with best wishes, Vee
It took me 5 days just to be able to say the word Lupus without getting a lump in my throat or crying. I am getting better and arming myself with info. My partner has been surfing the net and only telling me the good stuff. Does everyone find this is really hard on your families as well as yourself, My partner and family have gone into this protect mode and I sort of feel like they are trying to wrap me in cotton wool, but I can see them biting their bottom lips.
Tess, I was Dx'ed after literally decades of up's & down's. For my husband and me, it's the weight of the years (so many!) that's painful to contemplate. I think it's better to know, so you can get the help you need.
When the word was first used, I assumed the worst, because I didn't know that lupus can be kept relatively mild in many people. While the range is huge, there are treatments for all degrees. No matter where you fall on the spectrum, it's important to know you have it, have regular checkups, avoid sun (if you're photosensitive), etc. So don't assume the worst! Hugs, Vee
Last edited by VeeJ; 10-03-2009 at 06:09 AM.
Reason: deleted sentences
Hello to all,
Thanks for all the info, I went to the seminar with my wonderful partner and family in tow. It was great to hear i'm not nuts, that one day you feel great and the next you can feel like crap. I am now taking all the precautions to keep myself well but today they tell me I have now gone into early menapause I swear I am going to spit it if this crap does not stop. Has anyone else's menstrual cycle stopped after starting Plaquenil and started getting hot sweats periodically. Oh well I suppose if menapause is the least of it that's ok.
Kisses to all
Tess, same thing happened with me. My lupus symptoms bloomed as my hormone levels dropped. But the cause/effect may be the other way around: lupus is known to worsen during hormonal shifts. So it may be that your lupus expansion piggy-backed onto your perimenopause, which you hadn't even realized was underway.
I've read that many women with lupus go thru premature menopause. My periods stopped cold when I worsened, then reappeared on time for awhile, then started skipping again. This lasted 2-3 years total. The good part was that my menopause symptoms (hot flashes, moodiness, etc.) were barely noticeable.
Weird: when I first started taking Plaquenil, about an hour after taking it, I'd heat up like an oven for several minutes; this disappeared over time. Hang in there! All my best, Vee
i've had lupus for 18 years now, was pregnant of my 1st son (eight month) and they told me lupus ,,scared as hell my husband's friend had died of that in 1988,,but he had stopped all meds...i'm not on meds since 2003,,but i was in the hospital for 17 consecutive months,,cortisone high dosage,,and also chemotherapy for shrinking lung disease,,,now i'm ok i only take meds for high blood pressure...thats it !!!! good luck
First, welcome to the club! :-) Veej, thanks for the Daniel Wallace's book! I absolutely find it more difficult for our loved ones to grasp the term "lupus" than we ourselves. I have a twin sister who has yet to be diagnosed with having lupus (doctors predict there's a 50% chance she does since we are identical) unfortunately they are unable to test/treat her until she shows symptoms. We've lived in the same area (state) all our lives up until 5 years ago when I moved two states away (environment/diet/stress can trigger symptoms of lupus). Since being diagnosed I’ve had to do double duty to make sure I’m doing what I need to in order to take care of myself while staying calm/confident for family. Educate your family about lupus regarding your diet/exercise/meds/flares (good days & bad). They’ll never stop worrying but at least they’ll be more informed as to what you go through daily. Lupus acts differently per person. Doctors may try an generic approach in treatment so educate yourself & go with what makes it comfortable for you to continue to live your life.
I can relate I was diagnosed with lupus in July, but it took them 3 months to find out what it was. Im a college student too so it made school extremely hard having to see doctors every week. When I first found out the doctor was so nonchalant and she didn't even wanna tell me. It took me calling her over and over before she told. The way she said it I didn't think it was serious. I finally looked it up and after seeing the results I went numb and just broke down in tears. I still cry from time to time because I would have never imagined this would happen to me. My symptoms haven't got better but learning about lupus makes me feel a little better. Also being on this site helps a lot too because you don't feel like your going through this alone. I wish you the best and I hope this makes you feel a little better to know that we understand how you feel.