Friday, April 30, 2010

What It Comes Down To

As I mentioned in my last post, I have been doing a lot of thinking recently. The more I think, the more comfortable I become in my decision to stay an extra year in school. One of the main reasons I want to do this is for health insurance. My state, Massachusetts, mandates everyone have health insurance. However, I do not think I want to stay in Massachusetts after I graduate. So if I do not get a job, or go to a school, that offers health insurance, then I am out of luck. This would necessitate me living in Massachusetts to be sure I get the coverage I need.

I do not like that a lot of my decisions for my future are based on my health, or, more specifically, my health insurance. There are so many things that I want to do that I feel are being limited because the toll on my body would be too great, or it is kind of off the beaten path and I may not get insurance.

I bet this is something a lot of chronically ill young adults experience, and something that I would definitely want to discuss in the support group I want to start. It is something that has been weighing pretty heavily in my mind.

It is going to be a wonderful weekend here in MA. I am going to see my dad tomorrow and I have my last 8-4 shift on Sunday! I hope everyone else has a great weekend.

Tuesday, April 27, 2010

Got Me Thinkin'

I've been doing a lot of thinking recently about many different things. One of the main things is what I am going to do after college. I have a lot of different interests and jump from one idea to another on a regular basis. I really like developmental psychology, school psychology, nursing and music management - now I am seriously considering the Teach for America program.

I know several people doing Teach for America and one told me that the program likes for successful applicants to have leadership experience. So this got me thinking. One thing I could think of is starting a support group for students on campus with chronic illness. I do not think any such group exists and it is important for students to be able to reach out to one another. I know that I am frequently overwhelmed by the prospect of having lupus for the rest of my life. I am just beginning to come into my own, develop who I want to be. Unfortunately chronic illness is a factor.

This has to be the same for other student whether they have lupus or something else. Being our age and dealing with all the uncertainties that illness brings is difficult. I plan to bring it up with my primary care physician on Friday when I have an appointment. He can probably tell me if something on campus exists, and if not, how to go about setting it up.

I think this could be a good resource on campus AND provide me with the leadership experience I need for possibly applying to Teach for America (or grad school, or a job....)

I plan to write a post later about my decision making for staying an extra year in school and how lupus is factoring into my decision for after school.

Have a fantastic week!

Friday, April 23, 2010


Something I struggle a lot with is not feeling like I fit the mold of a "typical college student". I get exhausted so easily that I don't normally go out. I am 21 years old and I never go to the bars or clubs around town and I hardly ever go to just regular parties. There are a few of reasons for this:

1. Besides having lupus, I don't like the feeling of being drunk at all. I don't get it. I only like to drink to the point where I am "friendly". Whether due to my medications or my body chemistry or whatever else, it does not take much to get me "friendly".

2. Then there is the lupus itself. Just the energy of dressing up and looking cute can make me sleepy and achy. I really am no fun when I get like this and my friends notice it right away and it brings them down too. I hate not being able to do these things, and share in these experiences, but I really am miserable by about two hours in.

3. The recuperation period for me takes a long time, and I simply don't have much time. Between my six classes and two jobs, I don't really have the time to spend trying to recover. It's much easier for me to do things that I know won't take a lot out of me.

The reason I am writing this post is because I am currently sitting at home, 100 miles away from school about to go to bed at 10:45, and the rest of my school is partying it up. It's basically our spring weekend and there are parties and dances all around campus. I was so exhausted and out of it I decided not to drive home and spend my money (oh, my precious money) to skip work today and take the bus home.

But after all this, I still have to ask the question "What is normal?" I have to accept that this is what it is for me. College students come in all varieties, so fitting some media induced or stereotypical mold is not realistic. Maybe one day I will actually come to accept this.

Thursday, April 22, 2010

Weighty Issues

I finally got around to this post...

I was about 14 years old when I was put on the medication Depakote for various reasons. At that time, I was a stick. I weighed about 125 pounds and was about 5'4. The time that I got put on the Depakote was not a good one: I was going through a very hard time, had just been hospitalized and basically felt like my world was falling apart. The reasons I went on the Depakote (and various other medicines) are over with. It's part of a time in my life I do not want to revisit.

Anyway, I didn't know what they were giving me, but I took it anyway. I got out of the hospital about a week later, picked up my prescription, and read the side effects. "May cause weight gain" was a prominent one. I scoffed at that. I was always a tiny little thing and I could not imagine a medicine changing that. I was completely wrong. Six months later, I had gained 55 pounds, and I was not done.

The weight did some crazy things to my body. I tested positive for Type 2 diabetes twice, but luckily the sugar always came down. I did get the diagnosis of insulin resistance however and I was really scared because I did not want diabetes, but I also did not know how to lose weight on the medication.

In addition to diabetes, my heart and blood pressure started to have a hard time with the weight. I wound up in the emergency room more than a few times because my blood pressure would get so high that I would become dizzy or I would be having heart palpitations. The doctors found "changes" on my EKG, and they even once had to do a full workup for a heart attack. I was probably about 16 years old.

I'm not quite sure what the highest weight I reached was. Somewhere between 200-210 pounds would be my best guess. My skin was covered in stretch marks and my self-esteem had plummeted. I had considered myself a good looking girl but I could no longer stand to look at myself in the mirror anymore. My body had changed so quickly and I was miserable. I could no longer walk very far or wear my clothes.

In my second year of college I decided enough was enough. This weight needed to come off and the only way I knew how to begin this was by stopping the Depakote. So I did - cold turkey (which is definitely not advisable, but I did anyway). Things went well until the migraine hit. I was in migraine hell and ended up spending about five days in the hospital with a steroid drip to break it (one of the first clues to my lupus). The theory is that, as Depakote can be a migraine preventative, it was keeping the migraines at bay without me knowing it.

Even with these migraines, I wanted to continue to be off the Depakote. I felt...lighter. I had been on doses on Depakote before that were far too high when they measured my levels and I just felt so much better being off of it.

The weight did not come off over night, and I am still about 20 pounds heavier than when I started. Most of the weight was concentrated on my stomach, and that's where I still carry most of my weight now. From my heaviest to this day, I have lost somewhere between 55-65 pounds. It has taken me about 2 years to do this by changing my eating habits and by getting as much exercise I can tolerate. I am finally within a normal BMI, but I still want to lose about 10 more pounds.

My weight is one of the reasons I have struggled with going on prednisone. I have worked so hard to lose this weight that the thought of gaining it back is so scary for me. I know that there are a lot of people out there with lupus, or any other autoimmune disease, who are struggling with their weight. These drugs are not kind to the body - but one day THERE WILL BE A CURE and you can come off it. No matter what you look like on the outside, nothing can change who you are on the inside. I have learned the hard way that you need to accept your body.

There is a quote on the wall of my dorm that says "If you talk to your friends the way you talk to your body, you wouldn't have any friends" (I think that's right...). It is so true. I am still learning this even though I have lost a good portion of my weight. I do not, and may never, look the way I used to. I still have stretch marks covering almost every part of my body. I can still look at myself and hate what I see. But it's time to accept it. That's all there is to do.

Tuesday, April 20, 2010

Her Diamonds: A Confession of My Love for Rob Thomas

As I sit here and try to write a critical review on a short film that I really do not care about, I thought about making this post. I have been a fan of Rob Thomas ever since his Matchbox Twenty days. I fell in love with that band from the first time I heard the acoustic guitar on the song "3AM". Every word spoke to me, and I was obsessed.

Anyway, I have calmed down a bit. Matchbox Twenty has also calmed down a bit, but Rob Thomas' solo career has really taken off. While I still have a strong preferance for Matchbox Twenty, Thomas' voice still speaks to me. Especially in the song below. "Her Diamonds" is a song he wrote for his wife who suffers from a "lupus-like" autoimmune disease. Hearing Thomas' amazing voice describe what his wife goes through, and his reaction to it, had me hooked. I'm also glad he told the backstory because this song was very popular and I think helped to spread some awareness about autoimmune diseases.

Enjoy the song and the video!

Sunday, April 18, 2010

Winding Down

So this semester will be ending in the next few weeks. May 3 is the last day of classes and then we have finals for the week after that. I only have two finals, Spanish on the 6th and Media Programming on the 11th. Until then, though, have so much to get done. I have a group project and a paper for my New Media class, Spanish work, Media Programming work, a Psych/Lit exam and paper, a Plagues exam and last but certainly not least, my Writing for Comm case study.

My case study is examining portrayals of mental illness in females in the movies Prozac Nation and Girl, Interrupted. It's been A LOT of work, and I cannot wait until it's done. I have learned that, while I do not like research papers, I like primary research even less. Unfortunately, that's the stuff school is made out of. I am sure I would like it a lot more if I wasn't so stressed. It is a topic I am very interested in and ties in well with both of my majors.

So that's it for now. My lupus is still giving me trouble, but I hope to last the rest of the semester without too much trouble. And it helps that tomorrow we have no classes because of Patriot's Day. I worked both today and yesterday and I could really use the break.

Hope everyone has a good week!

Thursday, April 15, 2010

Well That's That

I finally got my blood test results from a couple weeks ago (after way too much time trying to convince the lab to give them to me, even though it said "to patient" on the order form and I have never had a problem before. They are my labs, why can't I have them?). I was feeling like complete crap a few weeks ago. Most of my results were good except for the highest ANA I have ever had. Well, it was a flare.

Luckily I am feeling a lot better. The CellCept and Mobic are starting to take effect. I am very thankful for this because I was pretty miserable. I am pretty stressed about a lot of things right now and I am so happy I do not have to worry about a bad lupus flare right now. Of course, though, I know I need to take it easy. Being on these meds and feeling better does not give me a free pass to do whatever I want.

I always have mixed feeling when I have positive test results. On the one hand, its scary to know your body is doing things you can't control. On the other hand, I feel better about the decisions I make to take these powerful, serious drugs.

Anyway, I still have so much to do. It is a long weekend, but unfortunately, I am working both Saturday and Sunday. My goal is to rest on Monday.

Monday, April 12, 2010


I am lacking in it. I'm feeling overwhelmed with school, work and other stuff going on with friends and family. I can't wait until summer, even though I will be working at the place I did my internship last summer, hopefully working and taking two classes. I just want a break.

I have been reading other blogs recently and a lot of them are talking about taking time out for yourself and relaxing. I can't seem to do that. Money is a serious issue and I can't just stop working. And the semester is winding down, so I can't ask for extensions without getting more stressed out later. I almost did not go to work today, but then I thought about my paycheck and went anyway. One of these days I really will relax.

Sunday, April 4, 2010

Opening Day!

I am a Boston sports fan. Especially baseball. The Celtics won against the Cavs today, and its opening day against the Yankees tonight. This is the start of summer for me. There is nothing like Fenway during baseball season.

Anyway, heading back to school today after a delicious Easter dinner with my family. I'm sad to be going back, but I know I have a lot of work to do. I am really glad I didn't go to work today as I am just starting to feel better and working my shift would have probably set me back another week.

Has anyone seen the documentary Sicko by Michael Moore? I watched it last night and finished it this morning. I recommend it. It has me thinking a lot. Maybe I will write a post about it later.

Hope everyone has a great start to their week!

Saturday, April 3, 2010

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!