smoke smoke go away....

The uncertainty continues.

The one thing that really messes with my mind since I got into the world of Wegener's is the uncertainty. Coming from a place of knowing, being more self aware of my body than the average Joe, to this constant uncertainty is quite un-nerving. So here's the quagmire I'm working on right now.

Factor number 1. The air in Jasper is smoky, very very smoke-eee. It has been this way for two or three days now from the fires in British Columbia.  When I left the hospital one of the things that was very stressed to me by the docs (my wonderful Dream Team) was to avoid smoke of any kind - campfire, cigarettes, any and all smoke (I would think that would include forest fire smoke in the air.) I had quite substantial lung involvement and can really feel it when it's even a bit smoky.

Factor number 2. I'm weaning off prednisone. Notice I said 'off' - dare to dream. I started at 60mg, am now at 25mg and supposed to go down to 20mg tomorrow. My rheumy has basically told me that I need to make the decision as to the rate of the weaning based on how I feel. Whoa!!! That's a lot of responsibility placed in the hands of a Weggie neophyte. The problem is that if the weaning happens too fast there is a risk of a flare. What's a flare you ask. A return of the gross Weggie symptoms that made feel like I'm at Death's Doorstep in the first place. How do you know if you have a flare? Not quite sure, but from chatting with my other Weggie friends, it's listening to your body and paying attention to what you're feeling, and if it goes on for 'too long' then you gotta go see your doctor to make sure you're not flaring. That in combination with regular lab work should alert us if I am flaring. What happens if I do flare? Not sure on that one either, but I think that we have to jump up again with the prednisone. That would suck because I'm not really digging the side effects of the drug and despite the fact that it's keeping me going right now, I would love to get off it ASAP.

Factor number 3. For the last few days I've been feeling some old feelings in my head. The intensity level is nothing compared to the last couple of weeks before diagnosis (which was out of this world painful) but they're there nevertheless. Popping ears, headache, sore throat, pain in chest area (same side that was bugging me just before diagnosis), leg in a vice grip feeling, generally quite tired (sleep is an issue too, but I got a relatively good sleep last night - had the bed to myself). I also had a crazy pain in my chest after being outside for about 20 minutes. I couldn't believe how much it hurt, and it felt like I couldn't take a breath... quite cool.

Factor number 4. Hana's all snotty and sneezy, there has been all sorts of bugs oscillating around me lately and not quite making their mark - the immunosurpressed large girl now living in my mirror. Have the germs finally succeeded?

So that's my dilemma. Why am I feeling the way I am, and should I be concerned? I think what I'm going to do is hold off on taking the 5mg predi off for this week and let it go another week. Hopefully the smoke goes away, and between the two I'll feel more 'new normal' again (old normal is a long ways away.)