I'm Not Used to This

The week that the doctor called to tell me I have lupus, I went back to work. Even though I could hardly move and barely had enough strength to stand, I refused to stop teaching. If I could get my hands over my head in the morning, I was going to work. (Looking back, the fact that this was my yard stick for whether or not I should go to work should have been reason enough to stay home.) I remember the day that I announced to my classes that I had lupus. Since the start of the semester, they had watched my hair fall out, my weight drop by over 20 pounds, and my body become more and more frail. They were so attentive in all the classes I had taught that year. I thought it was because I was a great teacher. But now I think it's because they were watching to make sure I didn't collapse in front of them. So when I finally had a diagnosis, I knew it would be better to tell them than to try to hide it. 

At the start of every class that day, I made the announcement. "I have lupus." The school where I was teaching at the time was a Bible college, a place where all the students were training to go into ministry. So I decided that I wanted to be an example for them. I remember telling them about how ministry is hard. Every single one of them will face challenges and obstacles. I spoke of character and endurance. I spoke of showing up in the hard times because people will need them to be there. I spoke of not giving up. And then I prayed for them, that God would strengthen their characters so they would be able to endure whatever their future may hold. And then I jumped right into my lecture.

I remember one class in particular that refused to let me leave it at that. A hand went up. "Um, can we pray for YOU?"  I remember them surrounding me to pray for me. It felt strange. I was so used to giving and pouring into them. I wasn't prepared for them to pour into me so beautifully. As much as I tried to hold it together and stay dignified, I cried as they prayed. When you pour yourself out for people, there are some that don't care. But there are also those who pour right back. I was loved. And those students were determined to make sure that I knew it.

Fast forward to today...

My life looks very different from how it looked over three and a half years ago when the doctor called me. But who I am hasn't changed. In the few years that I've had lupus, I have refused to stop investing in people. Whether it be at work, in ministry, in relationships, or even on my blog, I give what I can to help others. This month, my friend, Liz, decided that it was time that I was on the receiving end. During the month of May (Lupus Awareness Month), she's doing a fundraiser to help me with my medical expenses (an ongoing burden for me and my husband). She works for Keep Collective, a company that makes customizable jewelry. So she decided that she wanted to design a lupus awareness bracelet, sell as much of them as she can, and give me the commissions. When she told me she wanted to do this for me, I was shocked / surprised / humbled / slightly embarrassed / grateful / overwhelmed.  Like how I felt surrounded by students praying for me three and a half years ago, it feels strange. Even though I have found myself on the receiving end more now than before I had lupus, I'm still not used to it. And I've never been on the receiving end of something like this! 

I feel so loved.

It's really hard for me to ask for help. This is one of those advice-for-people-with-lupus things that I really struggle with. I abhor the thought of being a burden or inconveniencing anyone. What's more, I hate the thought of not being strong. Maybe you're like me. I get it. But you know what? Receiving help does not mean you are not strong. We are meant to help each other. And when someone who cares about you offers to do something for you, that is not a time to feel pitiful. That is a time to remember that you are not alone and you are loved. What a wonderful thing!

#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.

My Lupus Birthday Wish

My birthday is coming soon and the 2nd anniversary of my lupus diagnosis is two days later. I have a very special blog post saved for that day. I wrote it for someone. I don't know who they are, but I know they are out there somewhere. This year, I have a special birthday wish. I want as many people as possible to share my October 9, 2014 post so that the person I wrote it for will have the opportunity to read it. Please help me by returning to my blog on that day, reading my post, and sharing it on your social media page.

#lupusbirthdaywish

Blind Home Defense

It's the last day of a three-day weekend. I had a long list of how I would spend my time, but instead I've spent most of the time in bed. Sick. Yuck. It's just the common cold. I'm pretty sure I know who I caught it from. They got over it in a day. I am not so lucky. That's the reality of lupus.

For someone with lupus, something as simple as the common cold is not so simple. Because people with lupus typically have to take immunosuppressives to calm down their over active immune systems, it can be very easy for them to get sick. And when they do, it can take them much longer to recover than most people. 

The scary thing is that something as small as a common cold can even cause a serious lupus complication. Allow me to illustrate: The immune system is the body's home defense army. When an invader (sickness) comes along, it's the home defense's job to attack. But a person with lupus' defense army can't tell the difference between the invaders and the citizens. It's almost like they're blind. So when the sirens go off alerting of the presence of invaders, the defense army just starts attacking. Blindly. Hopefully they get lucky and attack only the invaders. But because they can't tell the difference, they may accidentally attack some of the citizens as well. And who exactly are the citizens that can fall victim to the blind defense army? It can be anyone: kidneys, lungs, liver, joints, skin...No part of the body is off limits when the home defense is in attack mode.

And this is why I don't like getting sick.

Wrapping Up Lupus Awareness Month

To everyone who
 
changed their profile pics to help spread the word,
read our blogs, status updates, tweets,
liked and shared our posts and pics,
wore purple and told the world why,
said words of prayer for us and words of encouragement to us,

On behalf of those who have lupus and are affected by it,

THANK YOU.

As things are wrapping up this month,
I have a few more requests:

Don't forget.
Don't stop spreading the word.
Don't stop praying and giving and loving.
Don't stop believing that your small acts are impacting the world.

Purple Shmurple

Purple is not my favorite color. In fact, I despise purple so much that I would pick pink--which I often claim is my least favorite color--over purple any day. I don't really have a good reason for my strong dislike of the color purple. I think I was just born this way.

...Then I got lupus. Purple is the color for lupus awareness. When I'm having a lupus flare, I have a bracelet that I wear to encourage me throughout the day. It's purple (of course), has a butterfly charm (butterflies are a lupus symbol because of a butterfly-shaped rash many lupus patients have on their face), and says the word "BRAVE" to remind me to be brave even in times when I feel weak or afraid. When I wear it, my husband knows that I'm having an extra hard day, that I will need some extra encouragement, and I will probably struggle to accomplish simple tasks. (If you come over my house when I'm wearing my lupus bracelet, expect to walk into a mess.)

For Lupus Awareness Month, my life is covered in purple: purple wardrobe, purple jewelry, purple profile pics, purple pens...A lot of purple. I believe so much about lupus awareness (see why here) that I am actually excited to don my least favorite color for the cause.

On Friday, May 16, 2014, the Lupus Foundation of America is doing a Put On Purple campaign. It's easy to participate. Here's what you do:

1. Put on purple.
2. Tell people why.

To help spread the word even farther, take a pic and post it on Facebook, Twitter, Instagram and whatever other social media you like. This will give you a chance to take a selfie for a great cause! (How often do we get to say that our selfies change the world?)

This Friday, I'll be wearing purple for lupus awareness, for myself, and for all the people who are impacted by lupus. Who's with me?

Click Away for Lupus Awareness

I love the internet. I also hate the internet. Google the word "lupus" and you are sure to find a myriad of stuff that is possibly (probably) untrue, outdated, infuriating, discouraging...Who has time for all that? There are a lot of wonderful resources out there, but it can take a while to separate the good from the bad. So after a year and a half of having lupus, what are my top go-tos?

1. My go-to lupus website: Lupus.org
When the doctors started mentioning lupus to me and I was overwhelmed with questions, the Lupus Foundation of America had answers. Everyday thousands of people worldwide visit the Lupus Foundation's website because of their wealth of up-to-date information. This, in my opinion, is the place to start and keep coming back to. This year, for Lupus Awareness Month, they're emphasizing taking action. You can learn more here.

2. My second go-to lupus website: LupusCheck.com
Lupus is not the same for everyone. so the key to effective treatment and care is the patient's ability to listen to their body and share what they're experiencing. This can be a lot harder than you would think. LupusCheck.com has downloadable resources to help lupus patients keep track of their symptoms and effectively communicate them with their families, caregivers, and doctors.

3. My go-to lupus reference book: The Lupus Book, by Daniel J. Wallace, MD 
This book is quite technical (not the type of book you take to the beach), but really helpful for understanding what is happening in your body. Reading this helped me to be able to communicate with my doctors better (and even helped me and my rheumatologist discover that I also have Sjogren's syndrome).

4. My go-to lupus blog: Despite Lupus 
This blog by Sara Gorman is my go-to when I need some lupus inspiration or advice from a "layman." She reveals her struggles, victories, and very practical advice on how to live a full life with lupus without being too touchy-feely. Unlike many blogs or books I have read, she is not angry, jaded, or in despair. She is a proactive entrepreneur who refuses to let lupus keep her down. She sells fashionable pillbags that are designed to help lupus patients easily carry, organize, and take their many medications. (I never leave the house without mine.) She even wrote a couple of books--I highly recommend--to help lupus patients, family members, and even children of lupus patients understand and navigate daily life with this disease.

Bonus: If you're a fan of Pinterest, there are a lot of lupus boards. You can see mine here. 

Why Lupus Awareness Matters (even if you don't have lupus)

I have lupus. Lupus awareness matters to me. But if you don't have lupus, why should it matter to you?

Lupus can take years (even decades) to diagnose. The period of waiting can be extremely painful and discouraging. The more we learn about lupus, the more efficiently the doctors will be able to correctly diagnose it, the more we can help those who suffer from it, and the closer we will be to finding a cure.

I didn't realize there was something seriously wrong with me until a few months prior to being diagnosed. Looking back, I had numerous warning signs for years: joint pain, extreme sensitivity to the sun, severe skin problems, fatigue... I had no idea there was an underlying cause for all of this. And lupus was nowhere on my radar. How I wish I would have known that my stressful lifestyle was making it worse, that exercising more wouldn't make me more energetic, that rest and "sleeping it off" wasn't enough to ease my pain. How I wish someone would have seen the signs and suggested that I get tested. How I wish I wouldn't have waited to get tested until I was in so much pain that I couldn't walk on my own and I lost a third of my hair. How I wish my husband and I weren't absolutely clueless when the diagnosis came. If only I had known.

Don't get me wrong. As hard as my life is, I do love it. I am blessed to still be able to work and pursue my dreams. But there are many people with lupus who are hurting in a different way. There are many who are angry, lonely, and in need of hope. 

You never know what may happen to you or someone you love. You never know who you may encounter. You never know what kind of opportunities you will have to be a light and help others.

This is why lupus awareness matters.

If you would like to help spread the word, check out the Lupus Foundation of America's website for a list of ideas.

May is Lupus Awareness Month

Last fall, when the doctors first mentioned I might have lupus, my first thought was, "It can't be!  Dr House said that it's never lupus!"  My second thought was, "What IS lupus?"  Systemic lupus erythematosus (aka, "lupus") is an autoimmune disease in which the immune system can't tell the difference between a good cell and a bad cell, so it starts attacking everything.  Every lupus patient is different, each dealing with their own set of symptoms.  For me, some of my symptoms include arthritis, rashes (which caused about half my hair to fall out), severe dry eyes, and fatigue.

Here are some facts I compiled from The Lupus Book, by Daniel J. Wallace, MD:

- In the United States, nearly 1 million people suffer from lupus.  It is more common than better known disorders such as leukemia, multiple sclerosis, cystic fibrosis, and muscular dystrophy combined.  Those who develop SLE do so in the prime of life.  And 90 percent of these sufferers are women, 90 percent of whom are in their childbearing years.  Moreover, the effects of the disease disrupt family life and account for billions of dollars in lost work productivity.

- Lupus can be a very difficult disease to diagnose.  Many lupus patients look perfectly healthy, but surveys have shown that newly diagnosed patients have had symptoms or signs for an average of 3 years.

- Research on lupus is also relatively underfunded compared to studies of other life-threatening diseases.

 So, what can you do for Lupus Awareness Month?

1.  Put on Purple on Friday, May 17 and tell people why.
2.  Post facts about lupus on your social media pages.
3.  Donate to help with lupus research.

(For more information, check out www.lupusawarenessmonth.org.)