Lupus Is A Learning Curve

Like life in general, lupus is a learning curve. You’re not equipped with everything you need to know the day you’re born. And I wasn’t equipped with everything I needed to know about chronic illness the day that I was diagnosed with lupus and rheumatoid arthritis.

It’s a process, a never-ending evolution. It takes time. It takes patience. And it’s a cold dose of reality that is hard to swallow. But getting sick made me take time to figure out some key things about myself. It made me ask the tough questions, even if I wasn’t fully prepared for the answers.

Exhibit A: Part of a post from late November/early December that I never finished writing, and, consequently, never posted:

I want 2010 to be a new beginning. I want to stop falling for guys who clearly aren’t good enough for me, because I feel like I can’t be picky because I’m sick. And who really wants a sick girl? That’s really lame, I know. But it’s a thought I can’t quite shake. I need to make peace with my last relationships. And I also need to make peace with illness. I need to believe that even though they didn’t work out, they were worth something. In some ways, I am where I am today in spite of them. And I am where I am today in spite of illness.

Because I was beat down by those relationships, mainly in a figurative sense. I was treated badly. And I allowed that to happen, because I didn’t think I was worth enough to stop it. And I have been beat down by illness. But I’m still standing. And that counts for a lot more than I allow it to.

I really want to make a change. I want to be a better person. I want to make a difference in the world. I want to find someone who loves me for who I am, and for all that I’m not. Someone who looks at me and sees me as whole.

In some ways, I sort of feel like I need to get over myself. Like wallowing in self-pity is better than facing up to reality, and that needs to stop. Because in reality, I could be dying, and I’m not. I know that things aren’t as bad as they seem. But it’s not just illness. There always seems to be some major drama happening in my life. And I HATE it. I despise drama. I don’t know why it likes me so much.

Shockingly, much of this has come to fruition. I have met an amazing man who really sees me for who I am, and is there for me unquestioningly during good times and bad. Cultivating this relationship has taken time and patience, but has definitely been worth the effort, because I never quite knew I could feel the way I do about another person.

And while things have definitely seemed better illness-wise, the learning curve is still there. And not just for me, but also for those around me. I think the biggest thing I want to convey is that I’m not the same person I was before. That’s not necessarily a bad thing. But it’s a fact. It is what it is. And where I end up at odds with people is when they treat my life like it’s the same as it was pre-illness. But how do you really convey this to people? Clearly, it’s something I still haven’t mastered.

When I woke up feeling a bit like I had the flu a few days ago, I realized I was experiencing my first flare in four plus months. And I finally realized about flares what makes them so nasty. It’s not just the pain, fatigue, and the feeling of un-wellness. It’s the fact that sounds are too loud, lights are too bright, and the hustle and bustle and stimulation of everyday life is just too much. What I would normally welcome, I just want to keep out.

It has taken me two plus years to realize when I’m flaring. It has also taken me the same amount of time to realize that I have to know my limits, and I need to stop before I push myself over the edge. Asking for help has been another thing that has taken getting used to. And those around me should know that I don’t always ask for help when I need it.

But the truth is, the more you live, the more you learn (hopefully!). And it’s the same with illness. I think it’s too easy to say that the longer you live with illness, the easier it gets. I don’t think that’s necessarily true. But I do see that the line between my life and lupus and rheumatoid arthritis has gotten much vaguer. It hasn’t been a seamless transition. But there is less distinction now between illness and my life, my life and illness. They are one and the same. And that suggests to me that somewhere along the way, I decided to “woman-up” and accept the hand I was dealt, rather than deny it or try to will it away.

And I keep trying to remind myself that nobody’s perfect. We all have flaws. Some are more visible than others. Some are more persistent than others. But we all have them. And we’d all be better off if we started celebrating our flaws rather than berating ourselves for them.

And maybe, just maybe, rather than squelching my life, lupus and rheumatoid arthritis have, somewhere along the way, taught me how to live.

Blogstipation

Lately I’ve been suffering from a case of what I will call “blogstipation.” I have plenty of ideas of what to write about, but I’m all plugged up. I sit down, and I’ll write a paragraph or two about a topic; but a few paragraphs does not a blog post make.

I guess I’m also feeling like the stakes are a bit higher these days. Almost every week, someone adds themselves as a follower to my blog (which is super exciting). But now that I have tangible proof that there are people out there that read my stuff, I don’t want to disappoint by posting le crap.

I have a lot of posts started, so it’s not like I have nothing. But a lot of them are written with the future in mind, a future that today seems to me to be the slightest bit uncertain.

As I sit here writing this, I’m inclined to hit the save button and walk away. I’m not sure what else to say, without wandering into areas that I’m trying to write about elsewhere. I’m not sure where I’m going with this…

Am I losing my edge?

I’ve been trying to find a “place” to write, which ironically seems to involve nature (and if you know me well, you know I am not the most outdoorsy person in the world). Doesn’t the above picture look nice? Hidden Lake Gardens. My boyfriend and I went there several weeks ago. I could really use my own hidden lake right about now. Need to find a place to write, need to find a place to write…

Anyway, there are a few things on the horizon. I may attempt to vlog, I took part in Jodi McKee’s Autoimmune Portrait Project, and I started volunteering at a local hospital. For now, though, I’ve got to power through the next week or so and finish teaching stats. Once I’m done with that, it’s time to work on my second preliminary examination, but I will definitely have more time, and hopefully more inspiration, when I’m not busy crunching numbers all the time.

Thanks for keeping on, even in my absence!

(Oh yeah, and I accidentally changed my blog layout, so I went with it.)

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.