#PutOnPurple

Happy Put On Purple day! Today, my husband and I are wearing purple for me, for all people who are are affected by lupus, and for lupus awareness.

This is the Lupus Hand Sign:

And these are my purple shoelaces.

To all the people who wore purple today for lupus awareness, thank you for your support and for helping spread the word!

Get Ready to PUT ON PURPLE!

Get ready for it! This Friday, people all over the country will Put On Purple for lupus awareness. This is my most favoritest day of Lupus Awareness Month! (Can you tell I'm excited?) It's a fun way to bring attention to a disease that is largely unknown and misunderstood even though it affects 5 million people.

So how does it work? Just put on your purple clothes and/or accessories and tell people why you're doing it. Even a conversation as quick and simple as,

"Nice purple shirt."

"Thanks! I'm wearing purple today for lupus awareness."

can lead to a great conversation or someone googling lupus for the first time. 

And please take a selfie, too! I'm typically not a fan of them, but when it's Put On Purple day, I'm all about the selfies...Selfies for a great cause! Just don't forget to tell people you're wearing purple for lupus awareness - maybe give a shout out to a friend or family member with lupus - and use the #PutOnPurple hashtag. It's so easy! So please help spread the word.

I'll be wearing my "BRAVE" bracelet for myself and a purple outfit for all the people who are impacted by lupus. Who's going to join me?

For more tips and ideas to make the most of Put On Purple, click here.

What You Need To Know About Lupus...Even If You Don't Have Lupus

One day, I asked my husband if there was something he thought I should write about. He said that I should write a post called, "Yes, lupus CAN kill you!" Uh...That's not exactly the message that I'm trying to convey with my blog. After all, having lupus is not an automatic death sentence. I don't feel like death is knocking at my door. An article by Everyday Health says, "The overall prognosis for people with lupus has improved a great deal in recent years. The 5-year survival rate for lupus patients seen at Johns Hopkins University from 1949 to 1953 was only 50 percent; today the 5-year survival rate is over 90 percent and the 20-year survival rate is over 80 percent." This is incredible progress. But even though things are looking up, my husband is right. Lupus still continues to take lives.

I don't want to sound bleak and I'm not trying to scare anyone. This is meant to be a wake-up call. A dose of reality. Maybe even a life saver.

If you have lupus, my words for you are simple: Your life matters. In this life, you only get one body. Take care of it.

If you do not have lupus, you need to know: Your actions can affect the health of someone who does. When it comes to lupus, ignorance is not bliss. One man's ignorance can lead to not-so-very-blissful consequences for someone with lupus. Something as simple as contact with a person with lupus when you are sick - a handshake, a hug, or even something as inconspicuous as sitting close by - can land them in the hospital or cause them to have a life-threatening lupus complication. At the very least, because they are likely taking immunosuppressives, they will probably catch what you have...except that having lupus will cause their symptoms to be more intense and they will take much longer to recover. "Oh, I just have a cold. I'll get over it in a day. You'll be fine." Or maybe not.

If you work with someone with lupus, putting them in a situation where they can't take care of themselves can force them to have a lupus flare. This includes things like regularly pushing them to work beyond what their body is able without allowing for breaks, putting them in situations in which they consistently miss meals, or even adding unnecessary stress by repeatedly asking them to complete tasks without proper notice ahead of time (when earlier notice could have been given). Notice my use of the words like regularly, consistently, unnecessary, and repeatedly. Every job has its busy seasons - times when people have to push harder, make extra sacrifices, put in extra hours. I am not saying that lupus patients should be shielded from seasons of intense work. I am saying that when they come, proactive measures need to be taken to ensure that they will continue to be able to work with no long-lasting repercussions to their health.

Here's the problem: lupus doesn't care! Lupus doesn't care how important the project, or how crucial the deadline, or how noble the goal is. Lupus doesn't care that this is not a good time for a flare. Lupus doesn't care that there are consequences for not getting everything done - it has its own consequences to exact. This may sound scathing, but it might be helpful to think of it this way: Is this project or job worth someone having a flare, being hospitalized, or having their ability to continue to work put in jeopardy? Take that question further: How can we get this done in a way that won't sacrifice the health of this person? You may be surprised how many solutions this question holds. You may even find that you'll have better results in the end than you would have had otherwise!

If you are a close friend or a family member of someone who has lupus, I'm going to guess that you've probably done what all of my friends and family did when they found out I have lupus...You googled it. Here's my advice: Do your homework. Don't buy in to every article you read. Investigate the credibility of your sources. (You can see some of my favorite resources here.) Don't learn about lupus so that you can give advice. Learn about lupus so you can be a great supporter! Learn about the disease and how it works. Learn about what kinds of things can cause flares. Learn about ways you can be a great caretaker or friend. Learn as much as you can!

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.