Worm hole

I feel like I've been stuck in a worm hole and time has taken on a whole new quality. It seems to be flying by at phenomenal speeds and I'm just stuck watching it warp by.

I've been conspicuously absent from here and the Common Thread blog and have been thinking about getting on and writing my ever present swirling thoughts down but these impulses to write always hit me in the middle of the night when it would be completely not feasible to get up and start things up while the rest of the family is in their fragile sleep mode.

I pulled through the first annual Pajama Day and it was a screaming success. I spent most of the day on February 29th covered in goosebumps and on the verge of tears, completely overwhelmed by the support and sportsmanship of my beautiful community. I put on my PJ's (my going out PJ's) that morning and dressed Hana in hers hoping that there would be at least one other person out there wearing theirs. Well to my complete shock and surprise, I got to the school and saw a number of the parents dropping off their PJ clad kids while wearing their own PJ's. The feeling and PJ wearers just snowballed from that point on. It was a magical day. Truly.

I spent most of the energy I had stored for the whole month on that one day but it was so totally worth it. I've been sick with a cold since then and it's just now starting to go away but again, worth it. People are telling me how wearing their PJ's all day changed their perspective in so many different positive ways.

My other issue right now is that I'm weaning off the pred, and it's lower than what my body makes but higher than what is needed to get the adrenals to even start waking up, let alone making their own corticosteroids. Soooo, the crappy side of this equation is that I wake up with no energy and the energy levels just drop from that point on throughout the day. There are also constant aches and pains throughout my body - all the time - that I am attributing directly to the wean. I think the disease is at bay now - I'm scared I might jinx it by saying so because this stupid disease can turn on you at a moment's notice. I have this feeling now in my brain that the pred wean might be one of the more difficult things throughout this process. I can really feel it, and I know that if you misjudge it by even a little bit you can set of a flare and be back at square one within a week. It's happened to a Weggie friend, and I do NOT want to go down that road.

There, I just got my mandatory whining in - sorry. I try very hard to keep my wa-wa's to myself, but I assume that there are other Weggies reading this and it might be something they might also be feeling and would want to know that it's not the exception but more the norm.