Gearing Up For the 4th

The 4th of July is definitely one of my favorite holidays. All the cookouts and seeing family and friends is so much fun. I have three cookouts in three days to go to. I have realized that I can't go to all three, so I am opting out of the one today.

My lupus and exposure to the sun are very linked. It takes all of two minutes outside for me to get a sun rash. I usually get it on my legs, regardless of whether I am wearing shorts or long pants, and more recently on my neck and the underside of my chin. The rash is painful/itchy. I think in reality it is more painful, but my first instinct is to scratch it for some reason.

I also have a really hard time with sunscreen. I hate the stuff. No matter what it feels oily and gross when I put it on. Even when the bottle says "oil-free" or whatever, I can tell I am wearing it. So I tend to forgo it. This is bad. I need to get better about this especially since I just started a new job and I don't have any personal/sick/vacation time yet. I can't afford to have a lupus flare right now. So I guess this weekend will be filled with lots of food, family, friends...and sunscreen.

Hiding Nuts

One of my good friends recently moved to New York City for a job and had nowhere to stay so I arranged for her to stay with my grandmother until she can find a place. I also recently just purchased a new computer (a lovely, wonderful MacBook Pro) and it comes with a camera built in. So I decided to step into 2010 and download Skype and spoke with my friend who is staying with my grandmother last night. She brought her computer into my grandmother's room so that I could speak to her as well. While speaking with my grandmother she informed me that my face looked fat. Thanks, grandma, for you honesty.

I didn't think that this was too much of an issue until last night when I was talking with my grandma. I'm playing around with the idea of starting a Youtube channel about lupus as well so I decided to do a test run today. After I recorded it and started playing it back I realized that my grandma was right. My cheeks are looking very reminiscent of a chipmunk hiding nuts. Sigh, I really hate this stuff.

Since I am feeling pretty vain right now and am a little horrified at what I just saw, I'm not sure I will continue with the videos until I can get my cheeks to look a little more normal. Of course, maybe having chipmunk cheeks would be better for the videos because they are something those with lupus and other autoimmune diseases often have. If I do decide to continue with the Youtube channel I will be sure to post a link to it here as well.

No Energy

I don't know what my lupus is doing right now. I am supposed to get blood tests every 2 weeks and its been, well, a while since I got them done. I get a CBC with electrolytes, liver and kidney function, sed rate and a urinalysis every 2 weeks and then ANA, complements and other assorted antibodies every 6 weeks. I've been slacking, and therefore I don't know what the lupus is doing other than making me feel like crap. Compounding the problem is that my deigestive system is being messed up by a very large stone blocking the flow of things.

One thing I am noticing is fatigue. I do not have the energy that a lot of my friends have. The thought of going to some club until 2 in the morning dancing and drinking and partying exhausts me, let alone actually doing it. I saw the movie Avatar today (which was A LOT better than I thought) and it was 3 hours long. I also went to get something to eat in the same complex as the IMAX where we saw it. I was done by the time I got home. I wanted to run an errand and maybe also see a friend, but I was so tired. I haven't left my couch or the bed since then.

I get really frustrated with myself. Why can't I keep up with my friends? Its all about limits again, and I just need to realize that. I sometimes think that they think I am lame or whatever, but my body just can't handle very much. My joints have been beating me up recently and I'm constantly worrying about how the food I put into my body will make it feel. But most of my friends have known me for most of my life. And Ihave found some very understanding ones along the way. It's probably all in my head when I think they think I am lame.

But anyway, I hope to be feeling better soon and I hope that my surgery takes care of the problems I am having with my stomach. Or else I need to see a gastroenterologist and I am quite tired of doctors and tests.

P.S. RIP Adam Frey