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.

How To Encourage Someone With A Chronic Illness (Part 4)

In my earlier posts on this subject of giving encouragement, I've focused on things that need to always be kept in mind when it comes to your relationship with a person with a chronic illness. In fact, some of my advice could have just as easily been for a post titled, "How To Not Discourage Someone With A Chronic Illness." This final "chapter" of the series is the fun one. At least, I think it is. The first three parts (you can check them out here, here, and here) were definitely much more intense to write. But this fun one's for those of you who want to go the extra mile and do something.

9. Do something tangible.

The sky's the limit with this one. This list is nowhere near comprehensive. But I hope that it gets your creative juices flowing. :)

Hugs...but only if you're not sick! If you are sick, just say, "I'd give you a hug, but I'm sick and don't want to pass it on to you." (Btw, if it's flu season, please don't be offended if they back away from a hug. Also, you might want to first ask if a hug would be okay. They may not be a hugger. And even if they are, they might need a chance to warn you that they're hurting a little extra that day and need a gentler hug.)

Bring them some coffee or food - homemade or store bought. I'm not the type of person who asks for stuff like this, but if you offer, I might just take you up on it! Make sure to ask them if they have any dietary restrictions first. :)

Invite them over to your house for a meal. My husband and I live far away from our familes. So when I was first diagnosed with lupus, it was a huge blessing when people invited us over for a meal. It gave us one less meal to worry about during a very overwhelming time. It was also so wonderful to be able to be with other people. The months leading to diagnosis were difficult, and having a social life was not possible. So these post-diagnosis meals were very special and I don't think I will ever forget any of them.

Offer to help with a chore or errand. Doing dishes, shoveling snow, raking, cleaning, laundry...I think you get the idea. Living with a chronic illness is hard work! Sometimes, getting stuff done around the house or running to the store can feel like too much when you're just trying to get through the day-to-day. And it's really easy for the discouragement to pile up along with the messes and growing to-do lists. A helping hand for even the smallest task can go a long way to give someone the boost they need.

Small gifts or care packages. It doesn't need to cost much. Don't underestimate how encouraging something as small as their favorite candy bar or a box of Kleenex (the good kind with the lotion in it) can be. Very recently, I was shopping at Target when a purple wreath caught my eye. I took a picture of it on my phone and posted it on Facebook with this caption:

I want this so bad for Lupus Awareness Month!

Does anyone want to buy it for me?

I was kidding. I thought my silly Facebook pic would be the closest I would get to displaying that wreath. I really wasn't fishing for someone to actually buy it for me. Really! But later that day, a dear friend sent me a long message with beautiful words of encouragement. She ended it with this: "PS - The wreath is ordered and on its way to your home."  I happy cried.

Speaking of purple...

Show support for them during awareness days or months. Last May, I asked my friends to wear purple and take selfies for Put On Purple Day and Lupus Awareness Month. Every time I got tagged on a photo, my day got brighter and brighter.

I've mentioned this before, but I'll say it again: Write a thoughtful note or card. It might even become something they treasure!

And now...drumroll please! Here's my very last tip in this series!

10. Ask.

Everyone is different. Words or actions that encourage one person may fail to encourage another. So if you've read my numerous posts on the subject and still feel at a loss, simply ask. If you don't know what to ask, here's a few ideas to get you started:

"How can I encourage you right now?" or "Is there anything I can do for you in addition to praying?" Just being asked lets me know that I am loved and not alone.

Here's the problem: If you want to do something more tangible for me and you ask me questions like this, I will typically draw a blank and say, "I think I'm all good," or "There's probably something but I just can't think of it right now." I'm not trying to be rude. I promise! I'm just really bad at answering questions like this on the spot. So if you want to do more to encourage someone, you might need to be a little more specific...

"Have you eaten? Can I bring you some coffee or any food?" 

"Would it be okay if I come over to help you [insert chore or errand]?" For this one, make sure you do it in a way that is gentle. Choose your words and tone carefully so that you don't come across as demanding, demeaning, or intrusive. Also know that the person may initially say "no" when you ask, but they will remember your kindness in offering. And there might be a day when they feel like they have used up the last of their strength, and just knowing you have an offer on the table to help with the dishes may be the lifeline they need.

"Would you like me to help watch your kids tomorrow so that you can take a nap?" I don't have any kids, but I've heard from my friends who are parents that they don't get any sleep. Naps are really great for people with chronic illness, but it can be hard to make them happen. So if you know a parent with a chronic illness, I bet that enabling them to take a nap would make them very happy!

- - - - -

I hope this post gave you some good ideas. I'm sure that there are a lot of things that I didn't mention. What are some of your ideas? Feel free to leave a comment. I'd love to hear from you!

How To Encourage Someone With A Chronic Illness (Part 3)

"What's the best way to encourage someone with a chronic illness?" When a friend asked me this question, I had no idea how hard it would be to answer! I started to answer it here and here. Today, I want to get to the heart of the matter and take a deeper look at emotions.

6. Celebrate with them. 

Celebrate?!? What?! How can you celebrate with someone who has a chronic illness when...they have a chronic illness?! And herein lies the problem. Just because someone has a chronic illness does not mean that they have nothing to celebrate! (By the way, if you think that the above scenario is outrageous and unlikely, I've been on the receiving end of such an attitude...It's very uncomfortable.) 

It can be easy to imagine being there for someone with a chronic illness during the hard times. But they need encouragement in the good times as well! Nothing is more of a downer as when I am taking a moment to celebrate something great in my life, and someone looks at me with pity and says, "I'll be praying for your lupus." WHAT?!? Are you kidding me?! If I just told you something good, even if it's a little thing, don't pity me! Celebrate with me! Sometimes, having a good day can be a big victory, so don't brush those days under the rug as though they don't matter. Celebrate the good days! Celebrate the good things that happen in the midst of bad days! Celebrate the happy things that have nothing to do with illness! When you celebrate with someone who has a chronic illness, you empower them to have dignity, to see their worth as a person, and to experience the joy of living.

(Please note that there are many people who are depressed as a result of or as a symptom of their chronic illness as well as many who are not. Treating someone who is depressed as though they just shouldn't be or with a dismissiveness towards what they are experiencing just adds to the discouragement. The flip side is true: Treating someone who is not depressed as though they are can also be a cause for discouragement.  Just don't assume either way and make sure to take the time to listen.)

Now back to the business at hand. Celebrating with someone who has a chronic illness depends on a basic understanding...

7. Understand they have a full range of emotions.

Most of the time, I'm smiling. It's not a facade. I'm a genuinely, very happy person. I tend to be happy most of the time even when I'm in extreme pain or going through a lot. I am also an extremely expressive musician to the core of my being. My ability to express such deep emotion on stage flows from a life that feels deep emotion on many levels in all aspects of my life. I experience life to the fullest with joy amidst all the highs and lows. Yup. Joy. And lows. There are lows. (Who doesn't have lows from time to time?) So you know what hurts me? It hurts when someone sees me on a day when it's hard to smile and says, "I think you need therapy to learn to cope." Really?! I am in intense pain 100% of the time, I'm bubbly and happy 90-something% of the time, and you think I need to learn to cope? Let me feel all my emotions without guilt!!!! I'm not saying that having lupus gives me a pass to act however I want or to be a Debbie Downer, but don't make me feel like there's something wrong with me just because I go through some hard times.

People who live with chronic illness are not any one emotion 100% of the time. No one is! Just because they are sad one day does not mean they are sad all the time and need counseling. Just because they are happy most of the time doesn't mean they don't ever cry or go through hard times. Just because they exhibit strength most days does not mean that there aren't also times when they are weak. Just because they are smiling does not mean they are not in pain. Just because they are in pain does not mean they are also emotionally hurting. If they are having a string of bad days, they may be just one day away from experiencing a good one. And if they're having a string of good days, they may be just one away from a not-so-good day.

So what do you do with all of this understanding? You empathize. Empathy isn't just something you do when things are going bad. So empathize during the smiles and the tears, the hard days and the good days, the sad times and the happy times. But don't stop there...

8. Live life with them.

A lot of the experiences that have encouraged me the most have had little or nothing to do with lupus. I'm talking about the times when people have simply lived life with me. It can be anything from church, a football watching party (Can you tell that I'm not really a sports person?), or a dinner out with friends. Even though I'm a hardcore introvert, being with people helps keep me going. When I'm alone, it's really easy get wrapped up in my pain or how tired I am. Time alone is the perfect incubator for insecure, sad, and even some scary thoughts. I can get pretty self-absorbed when I'm by myself. Too much time alone isn't good for my spirit or my health. But living life with other people has a way of helping me feel some sense of normalcy and making me feel vibrant again.

Before I continue, let me explain what a sense of normalcy is not. A sense of normalcy is not the same as acting as though everything is completely normal. For me, normal is what my life was before I had lupus. If I try to act like my life is normal, then I'm living a lie. The moment I found out I have lupus, normal went out the window.

A sense of normalcy is the feeling that I am still me. The feeling that life isn't over. The feeling that I can have relationships, and fun, and conversations that go on and on until too late at night. The feeling that I can still laugh. (I tend to laugh more when I'm with other people.) The feeling that I can still tell awesome stories. The feeling that I can still be a friend. Even the feeling that I can still be a useful part of society. I can't make myself feel these things on my own. These are things that are hard to feel. And they're so easy to forget. But when I'm with other people, I start to remember. And when I remember, I start to feel like me again. And what could be more encouraging than that?

Unburdening

I made a major change in my life yesterday. Every since I was diagnosed with lupus, my eating habits, my daily pace, my address, and my job have all changed. But my everyday, go-to bag has not. I've gotten other bags to add to my collection, but they are all too-large-to-call-a-purse, hurt-your-back-and-neck-and-shoulders, and carry-everything-you-possibly-can-including-a-small-library, sized. Until now. 

Yesterday, I decided that I'm done carrying heavy burdens everywhere I go. I decided to "upgrade" to something much smaller. My new purse - it really is small enough to be called a purse - has room for my cellphone, driver's license, debit card, keys, and pillfold. That's it. Five things. Only the essentials. Nothing more. It's liberating. And scary. 

What if five things aren't enough? What if I'm out and I don't have something with me that I neeeeeed?!? What if something bad happens because I didn't have everything with me? 

I had gotten used to my burden. It was my safety blanket...a very painful one, but a safety blanket nonetheless. It made me feel secure to have everything with me "just in case." But sometimes, you have to let go of the security blanket. Sometimes, you have to look your "What ifs" in the face and say, "The world will keep moving, my life will keep going, and it's going to be okay."