Wednesday, October 5, 2011

Lupus Walk

I'm walking in about 10 days to raise money for the Lupus Alliance of Long Island/Queens.  If anyone would like to make a donation, here is the link.  Thanks so much.

Tuesday, October 4, 2011

I hate this disease.

I'm just going to vent for a few moments if you don't mind.  I know that I could be so much worse off and for that I am thankful but I am approaching the 10 year anniversary of my diagnosis and it has got me thinking of how Lupus has affected my life.  For the most part, I have not allowed it to affect my life but in some ways it has changed my life in ways that I can't control.  I hate that no matter what I do I have to remember that I will probably pay for the fun later.  I hate that my kids are scared that mommy may be sick and have to worry about it.  I hate that I can't run with the kids the way that I want.  I hate that I can't be the wife that I want.  I hate that I had such a blast but now am paying the price for it.  Sometimes I forget that I have this disease but it just won't ever let me forget as it always comes back to bite me is a$$.

Monday, October 3, 2011

Paying the price for fun

We took the kids to Disney World for 6 days and my goodness am I paying the price for it now.  We had so much fun while we were there but WOW, I don't know if I could be in more pain.  At the time, I thought to myself, I should rent a wheelchair, especially at the end of the trip but I was too afraid that it would scare the kids so I didn't but now I am hobbling around like crazy.
I definitely pushed it too much and didn't admit how much pain I was in each day but it was so worth it to see the magic in their eyes.  I hate though that I have to pay the price for having fun and ultimately the kids have to pay the price because now I am almost incapacitated from pain and fatigue.