Tuesday, October 25, 2011
Lupus Awareness from a flaring Lupie
I should really just learn to shut up & quit jinxing myself... This week, I sent out an email to some friends & family in other states with a little up date on how I've been feeling since they don't see me. In my email I was so excited because I'd been feeling great & everything was great, etc. Now - I'm at the beginning of a flare. Ugh!
I've got so many feelings going on right now - scared, annoyed, disappointed. Whatever... The change of seasons really wreaks havoc on me! I got so wrapped up in feeling Ok that I forgot about that. Now, everything hurts again - my biceps, my ankles are locked up, my feet, my knees, my back my shoulders, my hands and elbows - it's just not fair! (I know, I sound like I'm 12)
I know most people don't get the whole Lupus thing, and I don't even completely understand it myself - basically my body is kicking it's own... you know what!
I love my friends & I do consider it an amazing compliment to hear "for as bad as you feel, you look great." I don't know - I guess I need to bitch and moan a little bit. Sorry - not real good at curbing myself sometimes.
I've recently learned that Rob Thomas (Matchbox 20) wrote the song Her Diamonds for his wife, who is also a Lupus sufferer. Great song & great to hear from the perspective of the care giver/partner.
Check it out:
We "Lupies" are a tough group. It's hard when you don't "look sick" & we don't want to complain about how much things hurt because we know that after a while no one wants to hear it. When someone does ask how you're feeling, you debate on how you should answer, or just spit out that you're feeling fine - or whatever when you know you just want to go to sleep and everything hurts. We're not lazy because we need to rest - we're just totally and completely zapped. Sometimes we just wake up that way! We're not in a bad mood, we're usually just frustrated & trying to make the best of each day as we get it. Hang in there with us. We're doing the best we can - even though it doesn't seem that way. If you're like me, you capitalize on whatever energy you have when you get it - and then are zapped the next 2 days... It's such a joy.
I'm genuinely not looking for a pity party - it was just a good opportunity to get my point of view out there since I'm "in it" to do my part for Lupus Awareness.
If you know a "Lupie" let them know you understand (even if you don't). Sometimes that's just all we need :)
As the wife of a very supportive husband - Thank you, honey. I know you want to "fix me" and don't know how, but I appreciate you wanting to. xoxo
Love all my supportive friends & loyal readers!
Thank you all for reading my blog!