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Tuesday, October 25, 2011

Lupus Awareness from a flaring Lupie

So they say it's Lupus Awareness Month - personally, I hate to take away from Breast Cancer Awareness, but I'm VERY aware of Lupus right now!

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:
http://www.youtube.com/watch?v=mNCgfrjKcqs

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!

~Jenn

4 comments:

  1. Love you and I'm here if you need me to help out in any way. xoxo

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  2. Love you back :) Just another day in the life... This too shall pass xoxo

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  3. Very well said! You know i get it, even if the name is different, the feelings and the symptoms are very similar.
    Your comment about looking good got me to thinking....yeah right did you notice how I am at least 50lbs overweight. lol or I must not be groaning as hard as I usually do. I don't do the hair & makeup like I used to. When prioritizing my day the are not on top. The reality is we have invisible diseases. Like so many others but other think we should look sick?

    My hubby is also very understanding. He sees & hears what no one else has the opportunity to. He knows he cant make it better but he has hope that one day I will be cured.

    I am grateful for so much even having this horrible affliction. I am glad I am not alone with these thoughts and feelings. Thank you for sharing yours and helping me to remember that!

    ReplyDelete

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