...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!
Wow, this is hauntingly familiar. Right down to the sleep, then do a quick chore, then sleep...then not sleep... I see my RA Dr. on Monday and after two years of fighting a downward spiral, I am going to ask about Cellcept. I've used it before with success. Don't ask why that Dr. stopped it. There is no answer. When my son was born with Autism and later diagnosed with Bipolar disorder, I advocated 24/7 and it paid off. At nearly 50, with my wide buffet of illnesses, it's hard to find the strength to do all the advocating. But in all fairness, my new RA Dr. found things through blood work (expensive, unbelievable bloodwork!) that answered a lot of questions. Now I just want my life back.
Thanks for the input. You certainly touched me!
This is what we needed to hear! Thanks!
Success is not final, failure is not fatal: it is the courage to continue that counts.
Thanks SleepyInSeattle, this is encouraging to hear. I am about 5 weeks into the worst flare I've ever had. I am just on the verge of going to a rheumatologist and getting treatment set up for the first time since I was diagnosed several years ago, and it is good to hear that your treatment has helped you. And some day I will learn how to spell "rheumatologist".
SLE and Sjogrens
It's hard to take over the world when you sleep 20 hours a day (Get Fuzzy)
... and neuro, derma, hema-t, etc... lol - I have to keep a search tab open and type words in anymore, since my internal spell checker quit me about 6 years ago... and even then, I still mis-type more than I think possible... 'course, I try not to think too much. It hurts...
"There but for the grace of God, go I."
"... His mercy endureth for ever."