Small victories

In a world where it's mostly one step forward, two steps back I have to revel in every success, no matter how small and seemingly insignificant to most. My health continues to deteriorate slowly but I still to try to keep my chin up and remain optimistic. Tomorrow I'll find out when I can begin my three month trial with Enbrel (might be as early as this week!) and we have high hopes in this household that it will help with the pain, ease the pericarditis and let me feel somewhat normal more often.

It's been three months since I stopped taking steroids (huge success on its own there!) and I'm noticing that its effects are starting to wear off. I'm not as fatigued, my muscles ache less, have lost the "moonface" and have started to lose a bit of the twenty pounds I'd gained (down six, hurray!)

However, the leg and cardiac pain unfortunately continue to worsen. Weird thoughts enter my mind when I wake from the pain during the night. If I went into the bathroom, couldn't I just cut my leg off with the nail scissors? What if I just willed my heart to stop for a few hours, wouldn't that give it a much needed rest for a few hours? Nights are sometimes just a bit too frightening.

Back to the days - although I'm not allowed to do any aerobic exercises (and me being me, I've had to test that several times - and it does indeed send my heart pattern into a tailspin every time) I've been able in the last few weeks to get back to doing Wii Fit a few times a week. The gentle stuff; balance, strength, and yoga. Not only do I enjoy it, it does seem to be helping to tone up all the areas on me that seemed to have gone out of control while on steroids. I don't look six months pregnant anymore - those steroids seem to love settling into the belly!

I'll keep you updated on the Enbrel. Although we're thrilled that I've been given the opportunity to try it - there's a small part of me that jumps ahead to the end of the three month trial. What if this doesn't help, or god forbid - makes things even worse? What next? And I then have to bring my mind back to positive thoughts - this WILL help and I'll be able to get back to doing some of the things I love to do. Keeping everything crossed that is cross-able!