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!
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
Might be the pred, Marta. I seem to have trouble getting below 7.5. But I wouldn't discount the recent RTX stuff either, which can lay you low. On the third hand, it can be pretty strenuous managing those spoons. I know, I know. My saying is that there is plenty of time for sleep in the grave. But let's not get there too fast, what?
ReplyDeleteAl
I remember my daddy saying that all the time when I was growing up and doing the usual teenage sleep routine. I now know that as a teen you need a huge amount of sleep and I was deprived of that during those years, maybe that's why I'm the nutcake I am today - ha ha, always blaming our parents.
DeleteI'm now even more tired after the 29th, but I'm coming to, slowly - very slowly, but it was so worth it. I'll have some video up soon. Lering how to edit with a real editing suite. Sweet.
Have a good one Al. The wave has started so now we just think about what to do and up the ante for next year. I even have AARDA on board. Woo hoo
hugs.
marta