Sunday, July 26, 2009


I was driving in the car with some friends today when I saw a sign for the Lupus Foundation of America. I pointed it out to my friend in the car who knows I have lupus and she said she had been hearing ads on the radio. I have not heard these, but it makes me really happy that lupus is now getting recognition.

Friday, July 24, 2009

I'm Still New

I haven't quite gotten used to lupus. I'm unsure about what to do in situations like the one I am in now. My joints ACHE, my chest is hurting and I hate anything that threatens to remove me from my bed. My rheumatologist was not in today and the nurse who called me back told me she had no idea what to do for me. Everything I see online tells me how to prevent a lupus flare, but not so much how to treat one once it has already started.

I guess this all means I need to be more proactive when I see my doctors. I need to stop being intimidated and I need to stop feeling like I am wasting their time with my questions. All it does land me in situations like now, a Friday night in pain with limited options on how to treat it.

I take Imuran and Relafen for my lupus, and I often supplement the Relafen with Tylenol. Hopefully, this combination will work its magic this weekend.

Wednesday, July 22, 2009

Universal Healthcare

I read an interesting article on AOL recently:

The article talks about how many young people are more likely than older people to support universal healthcare. I know I do. I will graduate college in a year or two and it will be a disaster if I do not have health insurance.

Additionally, my student loans are compounded by the fact that I already have tens of thousands of dollars of debt to pay back for medical expenses while I was searching for my lupus diagnosis. I'm 20 years old and already in major financial trouble.

I do not know as much as I should about President Obama's health care reform plan, but over the next few weeks I plan to learn much more as it is certainly something that will effect my life as well as the lives of many other chronically ill young adults.

Monday, July 20, 2009

A Very Long Road to Diagnosis

I was diagnosed with lupus in September of 2008, however I was sick way before that. Just before my 16th birthday in July of 2004, I was diagnosed with a condition called endometriosis via a surgical procedure called a laparoscopy. This condition had caused me severe abdominal and pelvic pain for a couple years and I was very happy to get the diagnosis. I was put on medications for it and they worked for a while. Unfortunately, the pain came back a couple years later and I had another laparoscopy in January of 2008. Since this last procedure I have had very few problems with the endometriosis and I do not consider it to be a real problem with my health anymore.

I can remember getting migraines as a very small child. As I grew up, the migraines seemed to lessen until October of 2007 when they came back with a vengence. I spent five days in the hospital that month on IV steroids to try to break the migraine. I was then tried on various preventetive medicines. Nothing really seemed to work and I needed steroids, IV Toradol and IV compazine almost every few weeks in order to get a few days of normalcy. I had been seeing a neurologist before this because I had a problem with a blood clot in my spinal column after a spinal tap for viral meningitis a few years earlier and a bout with something that looked a lot like Guillain-Barre syndrome the year before. My neurologist was perplexed on how to treat me and we tried various preventetive medicines for a while.

In May of 2008 I started realizing that I would get a painful rash every time I went out in the sun. I did not know what was going on. A few weeks after the rash started, the fingers on my left hand started to swell up and then my right hand and feet followed next. I also started to get very weak and tired when I went out into the sun. I made an appointment with my doctor and they ran some blood tests for rheumatoid arthritis and also tested my ANA and did a complete blood count. I was told by phone that the rheumatoid factor and ANA were negative and that everything seemed fine so I should just drink more water in the sun. I tried this, but was still getting sick, so I went back but had to see another doctor. She told me that the CBC was not completely normal and informed me I might have lymphoma or another blood cancer. Needless to say I was shocked.

I did not believe this was the case. I told her about my joint problems and my (extensive) medical history and she said I should see a rheumatologist. I hoped this doctor would get to the bottom of everything. However it would be months before I could see one. I started my 3rd year of college in incredible amounts of pain, unable to tolerate the sun, with sores in my mouth, the rims of my eyes and in my scalp and feeling pretty awful in general. I called the rheumatologist I was supposed to see and pleaded with them to take me sooner. And they did. After hearing my symptoms, the doctor told me he was pretty confident it was lupus. They did blood tests and the were...normal. I was so confused. But he was positive that it was lupus and started me on Plaquenil.

The Plaquenil and my stomach were constantly at odds and I was in terrible pain and still getting sores, so he switched me to Imuran and put me on an NSAID. Around this time I decided I had enough of the school I was at and transferred to another school 100 miles away from home. I started with a new primary doctor and rheumatologist. My ANA tested positive after I saw the new rheumatologist (the only time since then). My sed rate and C reactive protein, red blood cells and some other blood tests came back strange after that also, so I officially got the 710.0 diagnosis of SLE.

This really is a brief overview of what I went through. I have been hospitalized many times since the age of 14, told I was a hypochondriac, and was completely miserable for a long time. Getting the diagnosis, while scary, also proved to myself that I was not crazy. At this point, I don't care about proving anyone else wrong. I knew for years something was going on in my body and now I know what.

Thursday, July 16, 2009


This is my blog to talk about my daily (weekly, monthly, however often I update it...) life with lupus. I am a college student dealing with a chronic autoimmune disease called systemic lupus erythematosus. I was officially diagnosed in September of 2008, although I had been sick for years before that. It wasn't until my left hand decided to swell up one day and I had some strange blood work that the ball really started to get moving. Before I had been told that I was flat out crazy or just making things up.
Lupus effects everyone differently. For me, I have an extreme sensetivity to heat and the sun. My joints are also effected, mainly the ones in my legs and feet, but also in my back and upper body. In October of 2008, I started getting horrible migraines, and I still continue to get them frequently. I think these are associated with the lupus. I also get canker sores far more frequently than most people. They can also develop on the rims of my eyes, my scalp and my nose.
When I got the lupus diagnosis I was happy to learn that I was not crazy. But after having years of people telling me that I was, I doubt myself very often. Even when I know something is due to the lupus I think I am making it up in my own head and maybe push myself or not take care of myself as well as I should. I also am a 20 year old college student and dont want to miss out on stuff because I am sick.
Anyway, I am starting this blog over my summer break, so I'm not in school at the moment. I have a great internship, but need to find a job that pays me ASAP. So, I'm off to go hunt Craigslist some more.