Posted 7/25/2008 5:45 PM (GMT -6)
Rosie, I missed your response when I was posting. (((hugs))). Yeah, I'm struggling pretty bad right now. As the last couple of hours have gone by, I can feel the flu type feelings coming on. A sure sign that it's my lupus. I checked my temperature and I don't have a fever. I'm perfect that way
It's the pain in my feet, which I know you've had too, that is really getting me down. I can't believe you had it for 2 years. Oh Rosie. Lynnwood, you described the molten glass feeling in your joints - and that's just how my feet and some of my other joints feel. My shoulders are bad like that today. I'm feeling it on the left side of my ribs too.
Honestly you guys, how do we do this every day for the rest of our lives? I feel I've been battling this off and on consistantly for about a year now. With it being really bad this past 6-8 months. I go into a flare, get it resolved in a week or so, be okay for a month and then the cycle happens again. This is my 3rd flare up since the end of April. I've never had so much trouble staying out of a flare.
I mentioned to my rheumy yesterday (on the phone), just before she left on her vacation, that I wondered if my prednisone and Imuran weren't working anymore. She said it's possible, but there aren't many options for me. I don't understand that comment? There's Plaquenil, CellCept, Methotrexate. Do I have "issues" that don't make me a candidate for these other treatments? I just don't know. I need her to clarify that comment. Clearly, I don't have my lupus under control. Something needs to be done about that!
Stacie, you're on a combo of Imuran, Plaq, and Methotrexate. Those are all immune suppressants. Wow. So it is possible to add another one on to my regime, maybe? The Imuran has caused me to have leukopenia, so adding another immune suppressant might make me too low..... Maybe that's what she's thinking... Thank you for your kind words Stacie.
I seem to be having a heck of a time dealing with this emotionally. I'm crying right now actually. Am I depressed, just sad, frustrated, all of the above. I don't know. I guess I'm not used to dealing with all these issues all at one time. Does anyone else just cry and let it out almost every day? Do you feel like you're being picked on? I feel bullied. I feel like lupus is a big bully. Is that weird, or does anyone else feel like this?
Thanks guys, love you all,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus