Yesterday I went to see my Rheumatologist. I was was very frustrated and upset and disappointed. I am in a VERY bad Fibro and Sjogren's flare right now. It started because I was put on Prednisone for Chron's disease, but when I tapered off of, it threw me into the bad Fibro flare. I've never had a flare this bad! I was already (and have been) in a bad Sjogren's flare for awhile now. I am in so much pain, it's mind numbing. Nothing is taking care of the pain.
He told me there wasn't anything else he can do. I am on Cymbalta for depression, and the Fibro. I'm also on Plaquenil for the Sjogren's, and a bunch of other meds for other things. He wants to put me on Neurontin, but I can't take it. It sent me to the hospital for a few days because I literally couldn't remember anything, or who I was. Scary. Aside from that, he said there is nothing else to be done.
I am up for about 3 hours, then I have to rest for about 4 hours before I make dinner. If I can make dinner that night. Forget about cleaning. The state of my house is a whole different rant. (I have 3 other adults living here. Nuff said!) My boyfriend is trying to be patient with me, but I can tell he is at a loss. Last night he said he was frustrated that he can't do anything for me. I was in tears last night because of MY frustration and he was afraid that I'm suicidal, because I said I felt like I was up against the wall and there wasn't anything I could do, I felt hopeless, and wasn't sure how much more pain I could take. My depression is a very serious matter that I have to deal with on a day to day basis. But depression wise, I am actually ok, just frustrated.
I asked if I could have my recent blood work results, and he gave them to me. He didn't mention that my Complement Component C3C is at 224, out of a scale from 90-180. What does this mean? I don't know. The doctor mentioned again that he felt I had Lupus, but it's not showing up in the blood work. *shrug* He also said "To look at you, you look like you're healthy." I was flabbergasted! He can read my chart and see that I'm in a world of pain, and I have so many things wrong with me, that the alphabet doesn't even cover it.
Thank you for letting me rant/cry/vent. I'm tired of being in bed for most of the day, lately, and even more tired of being in constant pain. I know I'm not alone. Thankfully I have you guys, who actually understand. But I still feel like I'm out in the middle of the ocean, on a fast shrinking ice berg.