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Thread: Does it ever get better?

  1. #1
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    Default Does it ever get better?

    I am newly diagnosed with SLE, I am in a funk about it, but as I am looking around on here for some kind of support it just looks like everyone is depressing, and miserable! Does it not ever get better? Does it only continue to get worse and worse until I get even get out of bed?

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Krysta,

    Welcome to WHL.

    One thing we like to let all of our members know, is that this is a safe place to vent your frustrations and fears. As a result, you are going to see many posts that do not have a positive subject or spin to them. It's important for people to have a place where they can come and "cut loose" in the company of other people who understand, and who will not judge them.

    However, If you look just a little further, you'll also find some incredibly inspiring posts written by the newly diagnosed as well as by the veterans. There's plenty of encouragement to be had, and there's even some humor. (albeit sometimes slightly twisted)

    To answer your question, does it ever get better? Well, for me, things have gotten better since my initial SLE diagnosis in 2004, and things have also gotten worse. They got worse for me when I learned that I also have overlapping Secondary Progressive MS. I have my bad days, but I also still have many good ones. On the bad days, I hunker down and take care of myself to the best of my abilities. On my good days, I do things like whale-watching from my kayak, and driving a car that is so fast that it requires a parachute to safely stop before you run out of track.

    Kayaking and racing are two pursuits I began after I was diagnosed with SLE and MS. Some days, I can barely get out of bed.
    Other days, I paddle alongside Blue Whales and/or drive 190mph.

    If it can get better for me, it can get better for you as well. So please, have hope.

    Lupus is not an easy road, but it is by no means the end.

    Rob
    Last edited by rob; 03-26-2013 at 04:58 PM.

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    kdechau (09-08-2013), Sammy (04-15-2013), Saysusie (07-06-2013), tomcatsgirl (04-14-2013)

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    Welcome to the WHL!

    SLE is by no means a death sentence. While it is a chronic illness and challenging at times, it only has the power you give it. There are days when my symptoms will get the best of me, but it sure as heck doesn't rule my life. I'm in charge of destiny, not SLE or Sjogren's. The sooner you accept that you are in control of your life (and that you are not defined by a disease and/or circumstances, the more you'll get out of life.

    Then again, that's just my philosophy. I'll get off my soapbox now.......

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    Krysta, Wow, I was right there with you only a month ago. I was just diagnosed 4 months ago.. Felt like the rug was pulled out from under me. I wasn't sick for years looking for answers, just got this awful flare after a bad infection. I'm on several meds and I finally after 4 months am starting to have some decent days. Not where I was before, but decent. I think how this works is, you get a flare, have to take it easy, let the medicine get into your system to get it under control, and then you should go into "remission".. The maintenance medications should help to keep you in remission, or at least keep the disease to a minimum. At first I felt like this was never going to end but I really am starting to feel a bit better.. Hang in there and don't let the depression bring you down. I wish you the best!
    People Inspire you or drain you, pick them wisely







    lupus: plaquinil, Imuran, prednisone, vitamin D

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    I was diagnosed almost 18 months ago and while I have had some setbacks, I'd say that in general, my life is MUCH better now that I am getting treatment.

    Give yourself at least 6 months to a year just to get used to the idea of having this disease, and to kind of "re-learn" how your body works - also give your doc time to help you find effective treatment.

    This disease changes and shifts, and requires constant learning and adjustment. Life is always interesting, in good ways and not-so-good ways.

    I think there is a bit of a shock to absorb after diagnosis, just because now you know what is happening, and DANG - it's SCARY!

    But also remember that diagnosis means hope for effective treatment, even if it takes a while. Keep learning, keep exploring, and keep workingw ith your medical team to make things better and better.

    I feel better now than I have in probably 5-7 years, thanks to diagnosis and treatment. I'd say I am up to about 90+% of my "old normal" most days - some are not as good, but now I also know much better how to take care of myself so I can get back on track ASAP. It's really not too bad at all! I know it could change on a dime - but at least now if things DO get bad, we know where to look for solutions.

    And I know I can always com here and vent...

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    hi there... it does get better.. somedays or worse than others but once you have the right meds and have your lupus under control you will start to feel better. sometimes it feels like the pain never ends but there is a light at the end of the tunnel

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    This is so true. I just try to focus on the fact that maybe tomorrow will be a little better. Even if its a little less pain or less swelling its still something to look forward to.

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    This is definitely one of those inspiring posts!! Thank you and I hope you are having more good days!!

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    I find myself coming here when I want to whine. I can see how it gets depressing. But as Rob said its place where we are not judged and understood. I'm newly dx'd myself and am in the process of finding what meds will make me feel well. I do have good days but those are the days I'm not on here lol. I still work full time and enjoy my hobbies. Have a puppy at home that keeps me busy as well. To me lupus is like the weather it could be beautiful and sunny one day (or weeks or months) and freezing and miserable the next.

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    i am so glad ive read this post. i was diagnosed yesterday with SLE. thanks for giving me some inspiration to move on..

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