^^I was feeling like this last night and for those unaware this is a "Predator"^^
Today it’s been 4 weeks since I've worked full time. I still haven't gotten into any kind of schedule, but a few things are getting there. Tuesdays are my grocery day if I’m not having a flare affecting my feet or knees. Fridays is my go out to lunch day, again pending knee foot issues. I love banh mi sandwiches from my local pho shop so I've been having lunch there every Friday. They have great food and are happy that the white girl likes Vietnamese style coffee.
I’m a planner and like structure in my life so I still feel like I need more of a schedule. I had hoped that with less stress and more sleep my illness would improve, but the reality is if anything it’s worse. I went yesterday about the breathing issues I had been experiencing, and since quitting smoking (yes I do have a drag here and there when I’m out with Mickey)my lungs are actually stronger and better looking than they have been in years. I had clear lungs, the xray was clear, 98% O2 levels, EKG was good and high end of normal on the lung capacity test. The decision has been made to send me to a cardiologist just to be on the safe side. I told the Dr that my pain is constant so he prescribed me a Butrans patch. It is supposed to be less powerful than Fentanyl, and I will be able to take vicodin on days when I am in REALLY bad pain(HA, that’s every day lately), but should give me more constant relief with a steady stream of narcotic in my system. He also cleared me to start taking Arava. So I got home feeling a bit dejected with all the lack of any news good or bad. I mean I don't want bad news, but at least with bad news there’s a direction to go in. Anyway I slapped my patch discreetly above my voluptuous butt bump, and downed a Arava pill. About an hour later my system had a rebellion. I’ve experienced these feelings before when I was on Remicade. It is like every nerve in your body has little needles and anywhere your body is touching anything is getting needled, also every joint has a sudden flare so there isn’t a bad joint, they all hurt like hell and then comes the fever. With Remicade I would leave the Dr’s office after my infusion and get home, crawl up in the fetal position, and moan myself to sleep. This reaction has no “fatigue” at all. If anything I’m hopped up and zooming. I figured since I was going to be in this torture at home or out I would go try to play poker. The hope being that some social interaction would give me some distraction. Also besides the grocery store, Dr, and 3 hours at Urban Crust I really hadn’t left the house since Sunday morning. It was time to get out and be social. I sucked at poker as usual, and stayed a bit to spend a little time with the boyfriend, but by 9 I was ready to go home and resume the fetal position with crying added to the ritual. I really wished I could remove all my joints “predator” style (You’d have to see the movie to get it).
Upon waking this morning I do feel better. I’m not sure if the Arava or the Butrans was the reason for the reaction. I took the Arava this morning and not having the extreme reaction of yesterday. I am still pretty flared up everywhere, but the fever and nerve pain has stopped. I won't know which it was till I change the Butrans patch next week, and may never know for sure which caused it. My bet’s on Arava since it was SO similar to my Remicade reaction. You have to remember when you have these immune diseases that are your immune system over working that they are going to react to medications designed to suppress them just as they would a virus. Having an initial reaction to DMaRDS and Biologicals or even a recurring reaction like I did with Remicade is not unusual or unexpected. It does suck and it is your and your doctors call if these reactions are livable or not life threatening. On Remicade I’d still tell you I’d gladly give up 1 day out of 30 to function and even excel the other 29 and I’d do it without a second thought.
So there you have yet another ride on the side effect roller coaster. I’m going to finish eating my sandwich, egg roll and Vietnamese style iced coffee and get to work on my novel I was supposed to start yesterday. I’m now 4000 words behind. As you can tell I’m a bit long winded so that shouldn’t really be a problem. See y’all soon!