Sorry bout my absence

Wowee.... So all of this time that I've had a secret little hate-on for pred (yes, I know it's keeping me alive, but I still have a little love-hate relationship with it) all of the sudden I'm feeling an appreciation of the magical elixir properties of the wretched drug. As I posted earlier I had gone down to 6mg a week after my last infusion. Well, holy crap. I've been dragging my ars around like it weighs a ton (it's up there compared to old 'normal' but it's not at a ton yet.) I haven't felt so tired and lacking energy as I have the last few weeks. I had no idea how much energy pred gives you in your day (again I knew this but was avoiding thinking about it - our bodies produce about 7-10mg of the equivalent corticosteroids that pred gives you but your adrenals don't start to wake up until you're at about 5mg, so until they wake up, you're (I'm) functioning at an energy deficit - big time.) Thankfully my wonderful doc happened to be on here and noticed that and gave me a call to say 'let's try something a tad more conservative' - apparently at these lower doses 1mg is a big drop - I knew that but was trying to see if I can be one of the magic ones who pulls it off.

No way!

So now I'm doing one day 6mg one day 7mg for a month, then 6mg for a month, then 6mg one day 5mg the next for another month and I go and see my super doc so we can assess further. I find it trickier now with the pred wean than it was just dealing with taking all the sick drugs. Ughhh. But I'm moving in the right direction and keeping my mind focused on some other stuff - which for me is very therapeutic.

Now, I got a couple of stories from two more amazing fighters. Thanks you guys. I'll post them in the next day or two (unless I manage to sneak that in today). Thank you from the bottom of my heart for sharing your stories. I've received feedback that the stories on here are helping others who have been diagnosed, so we're accomplishing the overarching goal - thanks to you!

Another Weggie Story

I have just added another story to the Weggie Stories page. Thank you Ian for sharing your story with everyone. I know it's a little tough putting yourself out there, but it gets easier and even moreso when you know that perhaps it might help someone who's just starting on this journey.

I've been trying to take a few days and spend my precious spoons on myself and my family. Easier said than done but I'm trying.

I'll get back on in a day or two. Feeling like I'm in overdaft on the spoons right now.

Strange Sounds

What's that strange sound I'm hearing? Oh it's the sound of the snowball rolling down the mountain. It's the  Find the Common Thread Pajama Day snowball and I'm loving what's happening. LOVING IT! So keep it going friends. Start a little 'viral' PJ oriented activity in your neck of the woods to raise awareness for autoimmunity (nothing crazy though, when I say viral I mean through the web and word of mouth - just to be clear.) Find others hiding their pain in secret (or not so secret if you're me) not knowing how many of their friends are doing just the same. Lets all get together and stand up for the most neglected disease group out there - autoimmunity. Stand up in your PJ's on the 29th. Colour your finger red and make a fashion statement for Autoimmunity. We can post our pics and video here or on www.findthecommonthread.com - When this is bigger than any of us imagined, we can all say that we were there when it started.