I've been battling lupus non-stop for the past year and a half.. I beat one thing and have something else happen, story of my life. I was doing better and had managed to wean off of prednisone for 9 WHOLE WEEKS! Then I flared again, having severe back and hip pain and right leg weakness (which continues), and back on prednisone I went. I was dealing with the pain but struggling to make it to work or through my entire 12 hour work day b/c I'm a ICU RN (thank God for FMLA and a great group of coworkers). So on prednisone and cellcept, not feeling much better and taking tons of pain meds.. which I am NOT a fan of. I was trying to be as normal as I could be at 25 with lupus.
So last week, I drove to Walmart and while there I remember not feeling well, my heart was racing (which I passed off to prednisone), chest pain, nausea, and overall achy. In one of the aisles, I remember feeling like I was going to pass out. I stopped and held on to my cart for a bit until it passed. After it passed, I was very confused. I forgot where I was and what I was doing. I have no idea how long I wandered around Walmart, I didn't know what I bought or how much I spent (until I got home and looked at the receipts later that night). I remember the cashier talking to me about my soda and I couldn't form words to reply to her. Evidently, I stopped at Kohl's and returned some clothes also. For the most part, I only remember bits and pieces of that day. I remember trying to drive and feeling so tired and just telling myself to keep my eyes open. I could not comprehend what was happening or where I was. I couldn't even process enough to call someone to come get me. I made it home, thank God, without getting into an accident or getting lost. Luckily, I guess my body just went into autopilot.
So I went to my rheumy and had a total meltdown. I told her I couldn't keep up with this life. I don't have one. I'm depressed and anxious (which is not like me at all), I'm crying a lot and having some suicidal thoughts. I can't go do anything without "paying for it" the next 2 or 3 days. I can barely make it to work and now I can't even go out by myself. She is hoping this "spell" was medication related but I have had one other episode previously (luckily that time, my husband found me wandering around). So she cold turkey took me off of cellcept and decreased my prednisone. She said frankly I can't feel any worse than what I already do, so what's it going to hurt? She also sent me for another brain MRI (which I had yesterday). She's not allowing me to work for 10 days, for fear I could hurt myself or a patient by accident just because I'm sick and its not my fault.
I guess my question for all of you is.. has this ever happened to anyone else? Am I completely crazy? Because I'm starting to feel that way. I was doing some research and found that it could have been a seizure. I'm scared to say anything to her about a seizure for fear of more tests and her possibly not letting me work at all. And if I'm diagnosed with a seizure disorder, I will not be allowed to drive for at least 6 months after meds are regulated. I don't want to give up my job. This stupid disease has already taken so much from me. Also, my husband and I were thinking maybe I need to take a little period of short term disability (since I pay into it, and at this point I'm missing so much work and have no more ETO that I would make more on STD than I do now). Do you think this is a good idea? I don't know what she's going to suggest next but I've tried so many pills and nothing is working. I'm worried my next route is IV meds.. and Benlysta is NOT covered by my insurance (although my rheumy said she would fight that). Just the medication is $56,000 a year, not including the infusion costs. What are your experiences with other IV meds?
Sorry this is long winded, I'm just overwhelmed and don't know where to turn. I go back to see my rheumy tomorrow so hopefully I'll be able to give an update. Thanks for listening. ~Nicole
Endometriosis 2011, Lupus & Raynaud's March 2012
Meds- Lo Loestrin Fe, Plaquenil, Prednisone, CellCept, Prilosec, Celebrex, Tramadol