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.

I'm So Sorry Blog, I Haven't Forgotten You

Unfortunately, things have not slowed down for me. Just this week I have 4 exams and a paper. And all my classes are pretty difficult. I'm doing everything I can to balance school and work and keep my GPA. Which leads me to another problem: work. I'm not having enough time to do both school and work. My family has realized this and been EXTREMELY generous and supportive over the last few days and asked me to quit one of my jobs. Which I would love to do, but it would leave my employers in a tough situation. So I'm not sure what to do about that.

Which leads me to my family. They have shown me just how truly blessed I am over the past few days. I don't know what I would do without them.

Anyway, lupus-wise I am so-so. Today I am dealing with a very swollen and painful ankle which is disappointing because I normally don't have problems with my ankles. My rheumatologist has also mentioned starting physical therapy again for my knees because the arthritis is in my ligaments and tendons and I can't extend my knees out at all. I also had a bunch of endocrine tests done because my calcium levels tend to be high, my vitamin D levels tend to be low and I'm getting kidney stones a lot more than a person my age should get.

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.

When You Love Someone

An interesting thing happened the other day. I came home from my internship and the instant I came in the door I felt that something was not right. I didn't know why I felt that way but I knew something was off. I started calling for my dad because I knew he should be home and after a couple of calls he told me he was upstairs. When I went up there was blood all over the bathroom. He had cut his hand trying to install the air conditioner and it was bleeding pretty badly. It was a new air conditioner and when I asked him about it he said "I just wanted the house to be cool for you when you came home." It broke my heart that he had hurt himself trying to do something nice for me.

Now this injury, despite the disconcerting amount of blood, was not very serious. No stitches were needed and there isn't even really a scar now. But seeing my dad hurt was so disarming for me; I can't imagine what things must be like for him. He watched his wife die from an autoimmune disease and it must be horrible to watch his only child suffer from one.

My dad and I are very close and I love him with all my heart, and I know he feels the same about me. Watching him with just a cut on his hand was hard for me, imagine watching your daughter go through countless hospitalizations, surgeries and losing feeling in her legs...twice.

I hope to keep my dad around for a very long time.

Unique

Over the past few months I have been learning new things about my body. One of the most interesting things is that I have an extra cervical rib. For years I have had a mystery bump right underneath my collar bone on thee right side. Doctors have all felt it and tried to determine what it is. When my blood work started coming back abnormal because of the lupus, this lump caused them to think I had lymphoma (which of course scared the daylights out of me). However recently two doctors have determined that it is an extra rib. Only 0.2% of the population has one. They can cause some problems, but for right now it is not bothering me and so I'm not worried about having one. It just makes me feel very unique!

I have another congenital bone problem with my tibias, or the shin bones. They both are bowed to the side which causes my feet to turn out like a ballerina's. Unfortunately this does cause some problems for me and I think it contributes greatly to why the joints in my legs hurt a lot more than the joints in other parts of my body. Of course when other joints want to act up (like my right shoulder now) they really get going.

Also I have the congenital cataracts to deal with which have never really been a problem before this past year and a half. It seems like I was born with some interesting features to my body. There are a couple reasons I think this happened.

1. My mother had an autoimmune disease called sarcoidosis while she was pregnant with me. Her case was very severe and she was on very high doses of prednisone. Of course prednisone is deemed safe in pregnancy, but it has been speculated that the prednisone was the cause of my cataracts. Unfortunately my mother lost her battle with sarcoidosis when I was 5 years old, and seeing the effects it had on her make me resist prednisone even more.

2. I was born quite early. 2 months in fact. The details are a bit fuzzy as to the circumstances surrounding this but most of what I gathered involves "a lot of blood" and me being "impatient". Whatever the reason, I was preemie. I was pretty much OK once I came out and spent only a little bit of time in the NICU before I came home.

Whatever the cause of these issues, I may never know. I just have to accept my unique body and the lupus that comes along with it!

Nothing Like It

There is nothing like going home. My dad picked me up at school and brought me to the doctor's on Friday. She gave me a Flector patch, which is doing well so far. Then we stopped at my aunt and uncle's for a bit and then continued home.

I am not working tomorrow because I am pretty sure I would not make it. I am so happy to be spending Easter with my family. I have been so miserable lately and I think the best medicine so far has been being home with my dad and the rest of my family.

I am also completely swamped with work. I have never had this much to do before! Maybe I will post my list, but right now it's too overwhelming. I worked on some today and noe I am about to get into bed with a movie.

Happy Easter/Passover/anything else you might celebrate!

Sore Throats Are Not Fun

Went to the walk-in clinic today because I have had a sore throat for a few days. I got my blood tests back and my neutrophil count was the lowest it has ever been, so I scared myself into going. Everything looks fine with my throat but they did let me know I should be careful about a flu going around campus.

I am so happy it is the weekend. Everything has stressed me out this week: work, school, health, money. I'm almost considering quitting my job because it is unnescessarily stressful. But I need the money and it does relate to what I want to do. Also, I don't want to consider myself a "quitter". I can do the job. It's just one of the girls I work with is horrible, disrespectful, condescending and way too uptight. She makes working there miserable.

My migraines and joint pain have been pretty terrible lately also. Part of the reason is probably because I have had to run all over campus this week for work. I need to talk to them about that because I can't keep doing that. On Wedensday my back and knees and ankles hurt so badly I couldn't get out of bed after work. Just putting my feet on the floor hurt. I considered staying home on Thursday because they still hurt really bad.

My dad is visiting my aunt and uncle a couple towns over so I will go over there to visit tomorrow morning. I can't wait to see my dad, even though I saw him last on Monday. I am such a daddy's girl :)