Results 1 to 6 of 6

Thread: I'd like to offer some HOPE.....

Threaded View

  1. #1
    Join Date
    Nov 2011
    Posts
    466
    Thanks
    314
    Thanked 317 Times in 192 Posts

    Talking I'd like to offer some HOPE.....

    ...for those new to all this and who are suffering....

    I was diagnosed with Lupus, Sjogren's, APS and Raynaud's a year ago after several years of suffering. When I was diagnosed I was pretty disabled by these diseases - I see that now. I was in a fog back then and my symptoms came on gradually over about 5 years, so along the way I just kept pushing myself and "normalizing" how I was feeling because the doctors said there was nothing wrong (of course, in my heart I knew better - but sadly I listened to the doctors above my own body).

    My fatigue was so severe I sometimes had to pull over and sleep halfway through a half-hour drive to and from work. I work only part-time, and had to drink huge amounts of coffee just to get through two to three hours of work - then I'd get home and collapse for 5 hours - then drag myself PAINFULLY off the couch to make dinner, then I'd be asleep by 9pm - sleep for about an hour and then toss and turn - night sweats, body pain, etc. I look back at it all now and want to cry - I really was being SO STRONG by simply carrying on with 'normal life', but I kept beating myself up for being lazy. I wasn't lazy - I WAS SICK. I can see that now, and it breaks my heart.

    Anyway - I'VE BEEN THERE.

    Now, a year later, on Plaquenil and Methotrexate (both of which I really feared at first) I feel SO MUCH BETTER. It has been a long year with a zillion appointments, and ups and downs...I have had flares, I lost my hearing in one ear to autoimmune inner ear disease, and I still have bad days - but the bad days aren't NEARLY as bad, and most days I feel almost totally normal.

    I am protective of my sleep - I make sure I get enough because if I don't, the diseases creep back. I am on a special diet under my doctor's care because some foods trigger the autoimmune process in me - if I cheat, the diseases creep back. And sometimes they creep back "just because"....they are not GONE, but they are not running my life anymore. I think of them kind of like a sleeping dragon inside me...the drugs I take and lifestyle choices I make lull it to sleep. I am aware that it can stir, or awaken, and I know I am not cured - but I feel so much better. I am sure I will have bad times with it again - but right now, I feel better than I ever thought I would and I am SOOOOOOO appreciative of any "good days" I get.

    So please work with your doc to find the right meds and stick with it and PLEASE HAVE HOPE that you can get a lot of your life back. Sometimes this road is very dark - get support, advocate for yourself, and find the right doctor. It can make a world of difference!

  2. The Following 6 Users Say Thank You to SleepyInSeattle For This Useful Post:

    Derrie (09-12-2012), jmail (09-13-2012), Leahc (09-13-2012), Saysusie (10-10-2012), steve.b (09-12-2012), tgal (09-12-2012)

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •