I thought I may give this a try and find others that I have this disease in common with. I have SLE and was diagnosed over 15 years ago. Not much seems to change, the fatigue and joint pain are unbearable at times, and I take much time off from work. It is a good thing that I have a civil service job or I would have been dismissed long ago.
My current complaint is with my elbow that began to throb out of no where. Starting PT tomorrow, but I feel there is something broke deep inside.
I did a bad thing while on a trip for work to Florida for two weeks, I discontinued my Plaquenil, Elavil, and Cymbalta. I have issues wth taking meds and this is a pattern for me. The first doc I saw put me on endless doses of Cellcept, Plaquenil, and Prednisone. It seemed that each time he had a new name for my ailments, or should I say a name for the symptoms, the Lupus is absolute. He said I had fybromyalgia, rheumatoid arthiritus, etc. I changed docs and he came up with new names (forgetting now) to call my eye and dry mouth problems. LOOKS like I am out of space...happy to hear how others cope...:hissyfit:
i just posted a thread regarding the name thing. I know where you're coming from; how frustrating it can be.
But after taking a lot of meds for over 30 years, most of them I'm on for the rest of my life, I also know what it means to be sick of taking them. I always pay for the times I give in and don't take them.
Well, WELCOME to WHL. Stay awhile, you will like it. there are many with the same problem and we steer each other in the right direction and prop each other up when we're down.
Doing Better now, not so frustrated
Hoping soon to see two sets of footprints in the sand
I also would like to welcome you.
It looks like we all go through the same thing, especially when it comes to taking the meds.
Like you, I have been dx with several secondaries to lupus, like RA, fibro, sjogrens and raynauds, I also have asthma.
I enjoy the good days and moddle through the bad ones, thats all we CAN do.
So hang in there, come here and chat with us. It helps alot to have people to talk to, that are in the same boat as you are.
I see a therapist to help me deal with all of this because otherwise I'm pretty sure I would have fallen in the looney bin ages ago. I HATE meds with a passion but I know that I will be on them for the rest of my life so I have to learn to just "get over it" basically, as harsh as it may sound, not that I like it, I don't I hate it ha.
It's really hard, all of this, for me, for everyone, and all you can do is try to stay in the best state of mind possible (the mind can work wonders) and as debbie said, enjoy the good days and do your best to make it through the bad ones.