Tuesday, June 1, 2010

A “Sick” Day Or A “Typical” Day?

Holy June Batman! Wow, time is flying by, and I haven’t been posting much lately. As a quick update, I’ve been teaching undergrad stats during spring term. The prep work it takes to teach this class is eating my time, and I’m very much looking forward to some time off when class finishes in a few weeks. And I just got back from spending a wonderful weekend in New York and New Jersey, meeting my boyfriend’s parents.

All in all, things are mostly good.

But I want to take a step back…

Several weeks ago, I was hit with a wave of nausea and dizziness that stopped me in my tracks. I actually had to decide whether I would be able to make it to help proctor my students’ final exam; that’s how bad it was. Ultimately, I did make it to the exam.

But this kind of cycling in a single day has always been hard for me to deal with. I can feel pretty good, and then will totally hit rock bottom for a few hours, and then I will feel better again. Not only does this mess with me physically, but it takes an emotional toll, as well.

So when I have days like this, what should I consider it? Is it a “sick” day or is it just a “typical” day in the life of a lupus/rheumatoid arthritis patient? There are obviously bad days, when I am completely down and out, and there is no relief in sight. But more often, there are days where a few hours will be absolutely terrible, and then I’ll be okay.

I do know that as of late that I am having more good than bad days, which is great, and probably the first time since my diagnosis that I’ve said this. But I’m also having more flare-ups of lupus symptoms than in the past. And new symptoms that seem to point toward a somewhat more active state of lupus, as I wrote about in my last post.

I don’t have an appointment with my rheum until the end of June, but I really want to work to try and get out in front of lupus and rheumatoid arthritis, so that a sick day is no longer what all other days are measured against.

It’s difficult because I think many of us try very hard to quantify things, when certain things can’t be so easily measured or counted. Although I can say that I haven’t taken a single prednisone in nearly four months. Getting people off of steroids always seems to be a way that illness severity is measured, so looking at it from that standpoint, I’m doing very well.

Something else I haven’t mastered, however, is not pushing myself too hard on the good days. Feeling good makes me think that I’m completely cured, until I push too hard and get kicked in the butt for it. Lupus knows how to stick it to me in that way.

However, after getting back from a busy weekend on the East Coast, I know that last year at this time, I probably would not have come back from this trip unscathed. I’d be much worse for the wear. But this time, (hopefully I’m not speaking too soon), the most nagging complaints are a little sunburn and some blisters on my feet. I did get much more fatigued than I would have pre-illness, but there is definitely something to be said for not being in pain.

And I actually have a significant other in my life who is willing to accommodate/acquiesce to my schedule. I don’t feel like we missed out on anything, but we kept Saturday open, as it’s my day to take MTX. We both knew that mixed in with the busy and the crazy needed to be some relaxation time. And I think that may have done the trick. (Maybe I’m learning something…finally…)

A few weeks ago I wrote a note to myself:

MTX is kicking my ass today. I can feel the bile rising in my throat, the waves of nausea and dizziness, that unsurprisingly, come with a drug considered “chemotherapy”. I frantically press the buttons on my coffee maker, only to realize that I’ve forgotten to put the cup there. I’m trying hard to concentrate on this task, so that maybe, just maybe, I won’t puke.

And it’s weird, because some days are fine. I take the MTX and that’s it. I pop the pills – six tiny, ridiculously small pills, maybe the tiniest pills I’ve ever seen that would seem to do absolutely nothing – and other times it hits me right between the eyes and I’m out of commission.

This week was fine. But it’s kind of a chicken and egg thing. Was I fine because I didn’t do much, or did not doing much make things okay? I’ll never know.

But what I do know is that I’m grateful for the good days, and am trying not to let the bad days define my existence. It’s a constant struggle for balance, and I don’t always know when things are going to fall apart, but I am beginning to see the gradation of how I feel. I know I have to be okay with a certain amount that I can’t control. And when I do feel bad, I have to accept it, rather than try to work against it.

Nothing is written in stone, and I certainly can’t make a deal with my illnesses. But I can do my part to make sure I am feeling good, at least most of the time, and know when to stop when I’m not.

My schedule is pretty crazy for the next few weeks, so I’m hoping I’ll be able to make it through. That’s really all I can do.


  1. Oh wow- 100% agreement on almost everything you wrote here. Ironically, the worst reaction I've had from MTX so far was my first day which was a half-dose (3 pills) that caused dizziness. Since then I get a little "rush" and tend to feel pretty good on dosage days.

    As for balance- yay for more good days than bad! Having a rapid cycle throws me off as well- I almost crashed mid-morning but am doing fairly well now. And I call the urge to overdo it when you feel well "the Tigger voice" (http://redefininggood.wordpress.com/2009/12/04/the-voices-in-my-head/)... it's tempting to keep going, but it sounds like you are doing a pretty good job of pacing yourself.

    And I totally admire you for teaching stats!

  2. Wow, you're speaking my truth for sure in this post. It's all a struggle, but for the most part i'm better than two years ago. And the MTX (4 pills here) can really knock me for a loop. I'm usually mostly ok the day of the dose, but the 2 days after are a roller coaster. This week was my first dose up to 4 pills though and it was a long tired weekend.

    Glad to hear that things are still going well with the beau!

  3. I enjoy reading your blog. I can relate to so much of it. I would love it if you could check out my blog and perhaps share with others. I am new at this. Thanks!

  4. I call them adjustment days since you asked! :) It is so unpredictable and can be extremely frustrating when the disease decides to amp it up on you. I tried the metho and could not stay on it past the first dose. I had an infection within hours and I was pulled from it. Now on two other dmards and complimentary drugs for other issues. love your blog. Thanks for having me. Tazzy