Just checking in and wanting to vent a bit. I went to a new rheumy today for a second opinion, just as a backup for when my current rheumy goes on maternity leave. She was very nice and totally agrees with the things we've been doing. My current rheumy wants me to go on benlysta but I would be her first patient on it so that made me a little nervous. This new doctor agreed on the benlysta idea and drew a bunch of labs to see if there's anything else she needs to suggest. So overall the appointment went well. But I however, am not doing well.
I had to work the weekend and by my second 12 hour shift on Sunday, I was a mess. I was dealing with the pain (like I always do) until it got too severe and I had to go home. I am now overwhelmed with pain again and feeling very discouraged. I have been off of prednisone since October 30th and am feeling like I'm going to have to go back on, even though I do not want to. The doc I saw today said it was up to me if I wanted to or not, she wasn't going to force me. I really don't want to but I just don't know how much more pain I can handle. The whole right side of my body is in revolt. I can barely stand to type this because my right arm is killing me.
I'm supposed to work tomorrow and am trying to decide if I should even try to go or not. Like I've said before, I love my job more than anything and just can't give up. I've still been actively searching for new jobs (even though that's also something I don't want to do) and have been on interviews. There is a part time job opening in my hospital, in a unit I don't really want to work in but would be much easier and a lot of sitting. I've been trying to decide if I should just apply and take it if possible. At least I would still be in my hospital, not lose my benefits (they would however be more expensive b/c I'd be only part time but I can handle that), not lose my doctors, not mess up my school stuff, and still be able to see my friends occasionally. My husband keeps telling me it doesn't have to be forever either. I am just so frustrated and stubborn when it comes to giving in and giving up because of this crappy disease. He keeps telling me maybe if I can just get stabilized and keep working just a little that once I am better then I could go back to what I really love. He's so positive all the time and I just want to give up.. all I can do is worry. He'll be getting laid off this time next year, and even though we don't live outside our means, I still worry about me taking a part time job. I just don't know how to keep going every day like this.
Another thing I've been thinking about is different diets. It would be very hard for me to follow a diet but a girl I work with is very dedicated to the gluten free lifestyle and has been trying to get me to look into it. Is anyone on a gluten free diet or have you tried it? Results?
I just need some direction from someone (my parents are not there for me as much as I would like and really the only people I have are my husband and coworkers). What do you all think about the steroids? Benlysta? Changing jobs? And by the way.. I'm sorry I'm all over the place tonight. Its just kind of all spilling out because my mind feels like a tornado right now. Hope you are all hanging in there and I appreciate each and every one of you!
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prilosec daily, Lyrica BID, Folic acid daily, MTX injections weekly, Celebrex BID prn, Tylenol prn, Tramadol prn, Dilaudid prn, Zofran prn
~Don't worry about
tomorrow, tomorrow will worry about
itself. Every day has enough trouble~