Wednesday, July 21, 2010

Some Good and Some Bad

First for the good news: I got a paying job! It's about time! It's at this little neighborbood bakery about a 30 minute train ride from me.

Now, for the bad: I have gone on the dreaded prednisone. This swelling around my lungs is just not going down and its very painful and annoying. I knew it was going to happen when I went in there, but I am still extremely disappointed.

That's all for now. I'm still doing this ridiculous class so I need to continue my work on that especially since I will now have an extra thing to do during the day!

Friday, July 16, 2010

ER Visit

(You see, I knew I would start posting as soon as I made the announcement that I might be gone for a while)

I spent yesterday evening at the hospital. This was my first time being sent there for lupus-related reasons since my diagnosis. I was having chest pain when I breathed that just wouldn't go away so my rheumatologist sent me over. The diagnosis, as I thought, was pleurisy. For a few tense moments, after my EKG and some heart imaging, the thought was that I had a pericardial effusion. But that was not the case and I was out of there in about 5 hours.

The chest pain is still there but I can live with it until my appointment on Tuesday. There are some things related to my heart that I need to talk to the doctor about, but it is safe to say that I will be OK. I just cant go to the gym which actually bums me out a lot.

This was my first ER visit in a year, which pre-diagnosis was unheard of. I also haven't been hospitalized since October 2008, which is wonderful. I was averaging every 4-6 weeks being seen in the ER or being hospitalized in my high school days.

I'm glad everything is working out and I hope everyone has a good weekend!

Wednesday, July 14, 2010

Off For A While?

I am starting my second class of the summer today. It is pretty intense with papers, discussions, readings and about 4-5 normal length movies to watch each week. So I am doing something new and warning everybody in advance that I might be absent for a little bit (now watch me blog every day...)

Sunday, July 11, 2010

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.

Tuesday, July 6, 2010


It is seriously hot. The temperature reading in my dad's car measured 103 when I was driving home. And it is extremely humid. Luckily my dad let me drive his car into my internship today so I didn't have to drive my car with no air conditioning. Unfortunately today was probably the busiest day I have had in my two summers there and the A/C was off a lot of the time because we can't talk on the phone and have it on because it is so loud.

I am back home now with the beginning of a migraine. I am hoping it will work itself out if I drink some water because I don't want to take my migraine medicine because it makes me sleepy and I want to go to the gym later this evening.

Luckily, I have only had my sun rash a little bit on the 4th of July. It was minimal and it didn't even itch/hurt. I just noticed it when I looked down at my legs.

Anyway, I am so tired and so hot right now and the heat from my computer is annoying me. Hopefully I will be the proud owner of a new Macbook Pro by the end of the week because our financial aid awards are supposed to come out in the next few days.

To everyone in the Northeast, do your best to stay cool. And specifically for the lupies (but for everyone else as well), do your best to remember sunscreen and make sure to take rests when you need them.

Friday, July 2, 2010

Gearing Up For the Heat

The past few days here have been really wonderful. Not too hot, not too cold with beautiful bright skies. I have trouble with the sunlight, so I haven't been running around too much outside without some protection, but I am still enjoying the weather all the same.

All this will change on the 4th when we get a week of 90+ weather. Oh. joy. And to top it all off the humidity is supposed to ramp up as well. I really, really have trouble when it gets like that outside. I swell and get rashes and fevers and feel miserable. On the 4th my dad and I are going to his friend's lake house. We go out on the boat and have a cookout and talk. Later, when the sun goes down, each house on the lake puts on a firecracker show, with each house trying to outdo the others. I always think the house we are at does the best, but I might be biased.

The 90 degree weather is similar to what we had in NYC when I went last weekend. I stayed two nights with my grandma who lives in Brooklyn and one night with my friend who is subletting an apartment in Manhattan for the summer. It was so much fun, even when I got ugly itchy/painful blisters on my legs because of the sun. And even when my knees and fingers swelled up and I almost passed out in a boutique. Seriously, I had such a good time. I can't wait to move to NYC (maybe one day).

So, for the next few days I am really, really going to have to be diligent with my sunscreen and listening to my body. I kind of overdid it in NYC, but luckily things didn't get too bad.

In other health news, I have to go see an endocrinologist because I keep forming stones in my kidneys and then of course my gall bladder which I had out in January, My calcium levels tend to be very high even though my Vitamin D tends to be low and I am osteopenic. So I need to sort all that out.

I hope everyone enjoys that 4th of July and I will get my last post updated soon!

Thursday, July 1, 2010

Wow, Went AWOL

Sorry for the lack of posts. I have been busy with school, my internship and I even went on a little mini-vacation to New York City.

First, I would really like to thank SR at Grad Student With Lupus for nominating me for the One Lovely Blog Award! In keeping with the acceptance criteria, I will now nominate 8 other blogs (in no particular order) that I think are definitely worthy of your time. Once I can come up with more (which I know there are, but I am at work...) I will update this post.

1. Flow at The Life of a 20-Something With Lupus. This was the first lupus blog I started reading. Her stories are always inspiring and her ability to keep humor and hope in the face of such challenges is awe inspiring. Please check her out if you have not already.

2. Manic Mom because she is hilarious and deals with lupus on top of raising three kids. She is an inspiration for the type of mother I want to be one day.

3. KirBir at Not Standing Still's Disease. I love reading blogs by other college students and their experiences with chronic illness. Definitely check out this blog if you are interested in this like me!

4. Sara at Despite Lupus. She has written a book called Despite Lupus that I unfortunately have not had a chance to read. It is first on my reading list though when I get some income again!

5. Hanah at Capturing JRA through Horses. She is another young adult dealing with chronic illness, so her perspective is always of interest to me.

6. Laurie at A Chronic Dose. Everytime I see an update from her I get ridiculously excited.
7. Rheuma Girl at There's Always Room for Improvement. I love her humor and the words used in the UK that we don't always hear in the States.

8. Skye at Stuck at 21 with RA; Coping with It. Another perspective from a young adult.

In other news, some stuff has been going on with me health wise and I want to talk about my trip to NYC. That will come in a future post as I should probably get back to work.