God's Music

I woke up in the middle of the night to the sound of thunder, with a Faure nocturne and lyrics in my head: 

"...I hear the rolling thunder,

Thy power throughout the universe displayed."

I am curled on my couch - not from a lupus flare for once - so I can soak in all of the beautiful sounds that are surrounding my house and swimming in my head. I am awestruck by the beauty of this space. The power of the thunder accompanied by millions of droplets. Crescendos and diminuendos. Melody and percussion. Moments of great fury and other moments of rest.

God is playing a symphony in the sky. And in my heart - I dare not speak out loud lest I disrupt His performance - I whisper, "Bravo, God. Bravo."

Doctor Visits

If there are typos in this post, you'll have to excuse me. My eyes are dilated. See?

Eye doctor visits are a big ordeal for me. One of the medications I take for lupus is called Plaquenil. It's actually an anti-malaria drug. (Somewhere along the way they discovered it helps with lupus. Who would have thought?) Plaquenil makes it possible for me to function on a daily basis. It also has some nasty side-effects. It can actually cause blindness or even color-blindness. So every 6 months, I get my eyes checked to make sure it's still safe for me to take it. And once a year, my eye check-up is actually a three visit process. Today was visit one: they dilated my eyes, looked at them with bright (very bright!) lights, and took pictures of my eyes. Not fun. But at least they give me really cool, roll-y lenses, right? The second visit is the fun one. That's the one where they make me do all sorts of game-like exercises to see if I can still see a full array of colors and twinkling lights. (And of course, more pictures of my eyes.) The third visit is result day. That's the day I find out whether or not I can keep taking Plaquenil. Last year, they did see a small change in my eyes from Plaquenil - not enough to take me off my beloved medication, but enough to make me take these six-month visits seriously.

When you have lupus, it takes a team of doctors to take care of you. Most of my doctors - if all is well - only require a visit every six months. But my rheumatologist sees me a minimum of every three months. On top of that, add the occasional round of physical therapy - many more visits. That's a lot of appointments (and bills)! Sometimes it takes a lot of organization and discipline to keep afloat of all the appointments. But if I want to continue to function day to day, these appointments are mandatory.

It's just one of those things. They don't have to be fun. (Not that my doctors are no fun...They're awesome. Really. But let's be real: Even with awesome doctors, there are still parts of doctor visits that are not fun.) They just have to happen. 

But that's life in the real world, isn't it? There are things that just need to be done.

How To Encourage Someone With A Chronic Illness (Epilogue)

My husband is my hero. He works full time while pursuing his Master's. The night before his very first day of grad school, he was with me in the emergency room. It was a very long night. We didn't know yet that I had lupus, but we did know that there was something very wrong with my health. Everything I couldn't do on my own - the list was very long - he had to help me with. I'm able to function a lot better now, but he is still my greatest helper and supporter. He lifts me up when I can't stand on my own (literally). I honestly don't know how I would make it without him. I lean on him when I need strength, but I am also very aware that, at times, his strength runs out, too. The burden he feels is very real. He can't physically feel my pain or symptoms, but he is living with lupus as much as I am.

I am not the only one who needs encouragement.

He also needs to be heard.

He also needs people who will show him empathy. (Someone once asked me, "Can't your husband help you more?" No. On top of work and grad school, he spends much of his time taking care of me. He does not have much in terms of free time. He is exhausted far too often. Put yourself in his shoes - that's what empathy is, after all - and you'll see how horrific such a question can be.)

He needs people who understand that his identity is much bigger than being a caretaker or the husband of a lupus patient.

He needs people to consider the gravity of the words they speak to him.

He needs people to be slow to advise him. (You would be shocked to hear some of the useless advice people give him.)

He needs people who will celebrate his victories. (There is so much on his shoulders that it's really easy for him to not notice when he's had a victory.)

He needs people to understand that he has a full range of emotions. (He's got a lot going on! Let him feel the feels!)

He needs people to live life with him. (He needs a sense of normalcy as much as I do.)

There are days when he can use some help and tangible expressions of encouragement. (In the days that followed my lupus diagnosis, someone that my husband and I look up to gave him a big hug. He's not typically a "hugger," but this hug in particular meant something to him.)

And from time to time, he needs someone to ask him how they can encourage him.

People have told me that I'm a superhero - that they can't believe all that I've accomplished while I battle lupus. I'm not a superhero. To be honest, the reason I accomplish so much is because I have an amazing husband who sacrifices for me everyday and doesn't let me give up when things get hard. If you ask me, I think he's the real superhero! People don't really see all that he does for me. They often rush to give me encouragement, but forget that he could use some, too.

Don't neglect the caretakers. They do a lot! It can be hard for them to keep from drowning amidst their endless list of responsibilities. The burden they carry is heavy and discouragement is often looming much too near. (Imagine how it feels to see someone you love in pain everyday and not be able to take it away.) So don't forget about these heroes who often go unnoticed. The encouragement you bring may be the very thing they need to make it through the next week!

Why I Wear Yoga Pants

As I type this, I'm wearing yoga pants. That's right. I'm wearing yoga pants.

I'm not immodest. (Everything that needs to be covered is covered.)

I'm not lazy. (Even on a Saturday morning, I still put thought into what I would wear today.)

I'm not unfashionable. (At least, I sure get a lot of compliments on my fashion choices.)

And I'm not giving in to current fashion trends. (I'm hipster like that. Or not. I don't know.)

I'm not trying to make a statement. (Ok, sometimes I wear graphic tees to make a statement. But my yoga pants - not a statement.)

I do yoga (it's one of the few types of exercise I can do), but I probably won't do yoga today.

So why am I wearing yoga pants today? Because I am in pain. "Normal" pants hurt. They hurt to wear and they hurt to put on. But yoga pants don't hurt. And on a day like today, every little thing I can do to minimize pain counts. So I'm not ashamed of my yoga pants. I have more important things to be concerned about. Things like having lunch with my husband, listening to the birds singing outside my window, and enjoying my Saturday.