Why I'm Frustrated About Health Insurance

Medical bills. I have so many of them. I don't enjoy them, but one in particular has me frustrated right now. Let me break it down for you:

I recently had to go through a round of physical therapy. A very specific kind of physical therapy that is not easy to come by...There's one person in my area who offers it. I needed it in order to be able to function on a daily basis. My physical therapist and I agreed that I would pay $25 up front at every session until we found out how much my health insurance would pay, then I would pay the difference later. After 8 sessions (and $200 later), I got the bill in the mail. My health insurance company paid a total of $144.63.

The remaining balance that I need to pay? $1383.90!

Here's the problem: If I would have paid out of pocket from the very beginning, it would have cost me $85 per session. That comes out to $680 total. With the amount I had already paid, I was expecting a bill that would be less than $480 - NOT $1383! With insurance, I'm being asked to pay $631.83 above and beyond what I would have paid out of pocket!

Considering the amount of money I have to pay every month for medications (one of them costs $240 for a one-month supply), doctor visits, lab tests, and the high insurance premiums so I could keep my doctors, a bill like this is a very big deal.

It's wrong.

I know that people have different opinions about health insurance, and I don't mean for this to be a controversial or political post by any means. But what happened to me is plain wrong. I'm trying to talk to the insurance company and the billing department to see what can be done, but this never should have happened in the first place. This is inexcusable. I feel like I'm being punished for having health insurance and taking care of myself. I'm not frivolously opting for treatments I don't need. I'm just trying to live.

The Lupus Foundation of America reports, "The average annual direct and indirect costs incurred by a person with lupus can exceed $21,000...A higher average annual cost of illness per person than those living with rheumatoid arthritis, heart disease, diabetes, hypertension or asthma." The burden of lupus goes beyond the physical struggles. The financial cost of having lupus is high. It is a heavy load, overwhelming at times. And bills that are significantly higher than what they should be just add to the weight.

Something needs to be done.

- - - - -

Update: Since publishing this post and after months of phone calls and prayers, the billing office informed me that they discussed my situation with my physical therapist and decided to change my remaining balance to reflect what I would have owed if I paid out of pocket: $480! My opinions about health insurance still remain the same and I still think there is a problem that needs to be addressed. But I am thankful that my healthcare providers really do care. I am also thankful that there are people in billing offices that are willing to listen and go the extra mile. (Thank you, Sarah, for having my back even though you don't even know me!) 

So what's the moral of the story? God answers prayer. Caring people exist in surprising places. And you don't have to be a victim when your health insurance company doesn't play fairly.

To learn more about lupus, check out the KNOW LUPUS Card Game. Every time you complete a level, $1 will be donated to lupus research!

Lupus Awareness Conversations

This weekend, I was standing around after a gradation talking with a bunch of friends (and some friends I just met). I randomly asked, "Are you guys wearing purple on May 15th for Put on Purple day?" This turned into a conversation about Lupus Awareness Month.

A girl I don't know very well asked me, "What's your connection with lupus?" 

"I have lupus." 

She admitted that she didn't really know anything about lupus. So my husband smiled and said, "THAT's why we need Lupus Awareness Month!" 

She then asked, "What are some things that people need to know about lupus?" I began to spout out some points off the top of my head:

- Lupus can affect any part of the body and each lupus patient has a different set of symptoms. It is the great pretender because it can look like a lot of other diseases.

- It takes an average of six years for people to be diagnosed with lupus.

- They're not exactly sure how people get lupus or what causes it.

- There's only one medication specifically for lupus.

- People who don't have lupus need to be aware of it because many people with lupus do chemotherapy or take immunosuppressives. This means that it is very easy for them to catch things and get infections which can lead to a life-threatening complication. (At this point, an old friend said, "Yeah! That's why I told her I was fine when a coughed earlier!")

These are five things that I didn't know when I was diagnosed a few years ago. (You can read more about my cluelessness here.) This conversation is a perfect example of why I love Lupus Awareness Month! It creates opportunities to have conversations that would otherwise be very awkward. And it really does help bring awareness and understanding to a disease that is still such a big mystery.

Want to know more? Check the Lupus Foundation of America's Lupus Awareness Month Facts or the KNOW LUPUS Card Game (which allows you to help raise money for lupus research just by playing for free!).

Lupus Awareness Month, No. 3

This is my third Lupus Awareness Month. When I was diagnosed with lupus about two and a half years ago, I knew two things about the disease:

1. Dr. House said, "It's never lupus." (Apparently, sometimes it is.)

2. One of the contestants on America's Next Top Model had it and it made her hair fall out.

"Lupus" was a scary word to me because I didn't know what to expect. I didn't have any family or friends who had lupus  - no one who could tell me their personal experiences with the disease. I've known people with cancer, diabetes, Crohn's...but no one with lupus.

And then, there was the frustration I felt every time someone said, "You have lupus? I've never heard of it." Educating myself about lupus was hard. There was a lot of ground to cover in a short amount of time. But that was nothing compared to the task of educating the people I work alongside and live life with. There were things they needed to know. And I was far from equipped to give them the information they needed.

So I am so thankful for Lupus Awareness Month. For the education it provides. For the funds it raises to help find a cure. For the community it facilitates. For the tangible ways it enables people to show support and give encouragement to those who are affected by lupus.

Check out the Lupus Foundation of America to see the KNOW LUPUS campaign and also to see how you can take action to spread awareness.

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.