One Rough Week

Man, it has been one ROUGH week. I had a great weekend last weekend. I spent it with my cousins – their grandparents and aunt (and her son) were in town, so it was a full house. It was fantastic. Good food, the feeling of family, exceptional.

Then came Monday. I thought Monday would be good  - I had a great weekend with lots of sleep and healthy food. No such luck. Monday was brutal. I could only manage to crawl out of bed to use the bathroom – and that too only when I had to pee so badly I couldn’t hold it in anymore. Tuesday was not much better. The fibromyalgia pain seems to be getting worse and worse, it feels like every muscle is on fire but not on fire.. maybe pins? It’s hard to explain the pain. My joints – even the ones that aren’t very swollen from the lupus flare up – HURT. A lot. It just seems to get worse and worse.

The only reason I dragged myself out of bed on Wednesday was that it was a really bad day of school to miss. Some things can’t be made up, so I went. I ran into my doctor that day – he didn’t look pleased at the sight of my joints, but said he hoped the Lyrica (pregabalin) kicks in soon… but it ended up being a 12 hour day. And I hadn’t started studying for my test on Thursday. Which meant 3.30am bedtime and only 4 hrs of sleep. Then Thursday was another 12 hour day.

I COLLAPSED into bed. I slept for 8 hours, but then had a 3.5 hour class today – the kind where you’re watching a procedure and there was nowhere to sit down. I’m sure you can just imagine how much fun that was. My poor bed must be wondering why I never get into bed anymore. I just collapse onto it like my knees have buckled. I feel like someone beat me up with a baseball bat. And after 3.5 hours on my feet (plus the 15-20 min walk in the heat each way) I feel like I did before I slept for 8 hours. I feel like I didn’t sleep at all. Ughhhh.

I have lots of studying to do this weekend, but when will I catch up on sleep?! Sigh. I hope next week calms down a little, because this can’t continue…

Honesty at the Outset

I want to begin by stating that I will try to be as honest as possible as I write this blog. I am starting it with the hopes that it will not only help me connect with other people in my situation, but will also help the family and friends of people with lupus understand what their loved ones are going through. That being said, I'm sorry to say that I will do my best to keep my identity under wraps. The sad truth is that lupus isn't a disease I want all my classmates and future co-workers, bosses, etc to know I have. I know this makes it sound like I am ashamed of my diagnosis, but that isn't the case at all. Rather, I worry about the judgment they might make of my capabilities. Unfortunately, they may be right at times. Lupus isn't a disease that allows for consistent work ethic, let alone late hours and early mornings. It doesn't mean that I won't be a diligent worker, but I don't want them making assumptions about my capabilities before they even meet me. More over, I would like to retain my right to privacy about the state of my health.

I was first diagnosed at 16, when I was a university student. It was a long process to diagnosis. I was passed around from doctor to doctor. Through many tests, possible diagnoses, and prescriptions - some of which badly reacted with each other. I was in and out of the hospital throughout it and the trial is pretty clearly depicted on my grade transcripts. Professors weren't very understanding and it never occurred to me to take some time off. I haven't had a flare up in over 5 years, and was generally considered in remission by my doctor. This meant no meds, rare check ins, and generally I was almost able to forget I had lupus at all were it not for the residual joint pain and swelling I still experienced.  

I am now a graduate student, who is finding that it is quite a struggle to fight a lupus flare up and stay in school. I can't afford to take time off, but staying in school (i.e. not failing out) is not an easy task on its own let alone with an active flare.  I'm lucky that its not hitting my kidneys, but that doesn't make it any harder to live with. To be honest, sometimes I think my friends actually have a harder time understanding it precisely because of that though. I just don't seem ill to them. When the doctor told me that I was, indeed, having a flare, he told me that I would have to relearn my limits. He said that while I might think that I remember how bad it can get, I probably don't. He was right.