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.

Wednesday, August 24, 2011

Earthquakes and Hurricanes---What is going on?

What is going on?  I live in the Northeast and felt my first earthquake yesterday and are now getting ready to deal with a hurricane this weekend....what is going on with the weather????  What is going to happen next, Locusts?!   This is absolutely bizzare.

Yesterday, I was standing in my kitchen and all of a sudden I started swaying back and forth.  I thought I was seriously ill until I saw my fridge swaying with me :)  It was a bit disconcerting but fortunately there wasn't any damage here in NY.

Now, they are predicting a category 1 or 2 hurricane for us for this weekend.  It is insane and I will say it is stressing me out!

I hope everyone else along the East Coast stays safe!

Thursday, August 18, 2011

What if something happens to me????

My husband is very capable but sometimes I do look at him and worry what would happen to the kids if something happened to me.  I'm sure that everything would end up being OK but I definitely worry.  I'm the main caregiver and I'm home with them all of the time so I know everything about them and I manage the house, kids and animals while  my husband leaves at 7am and comes home at 7pm and really doesn't have a clue.  There are times that I sleep in and I come down to find the animals haven't been fed simply because he had no idea what to feed them and the kids had no fruit and were given McDonald's for breakfast because he couldn't figure anything else out.  I know I should be happy that they were at least fed but I still worry.  Any other mom's or stay at home dad's worry about this?  Sometimes I feel like I should write everything down just in case.

Thursday, August 11, 2011

My Lupus Tattoo

Last night, I went with a friend and got an addition to my butterfly tattoo.  I got the purple awareness ribbon placed behind the butterfly.  To me this tattoo symbolize my fight with Lupus but it also shows that I will not be beaten by Lupus.  When I originally got the butterfly I didn't get the awareness ribbon because I didn't want everyone to know that I had Lupus but now that my children are older, my daughter tends to tell quite a few people so even strangers know about my disease.  To some extent, she seems proud of me and it makes me proud of myself.  I was talking with her about it last night and she said that the new part of my tattoo (in her mind) was to show that I had Lupus and that even though sometimes I may be not feeling well I could still laugh and have fun.    She is proud of her mommy that even though I am facing a hurdle, in her mind, I am not letting it slow me down.
I left her room last night feeling so happy because for the first time in my life I truly felt like I had partially beaten Lupus;  one of my biggest fear is that it will impact my children and I realize that it is impacting them but not in completely negative way.   I am teaching them that even in the face of chronic pain they can still live, laugh and have fun.

Sunday, August 7, 2011

Truly hate days like this

I truly hate days when I wake up and it takes every effort to just move from my bed to the couch.  I feel like such a bad mommy when I feel like I can't interact with the kids.  Yes, there basic needs are met and this is only one day but it is still a day out of their lives where I feel useless to then.  They had fun playing together and then we watched movies on the couch but I still feel so drawn.   I think everything has finally caught up to me.  Fortunately, it is Sunday so I was able to do this I just hope that by tomorrow I have more energy.