Disney World and Lupus

I recently got back from a week-long trip to Disney World. The day we arrived in Orlando, we hit the ground running at Downtown Disney. The next six days was a theme park whirlwind: 5 days at Disney World and a day at Universal Studios for good measure. When we got back, every inch of my body hurt and I was exhausted. But I had so much fun and made so many wonderful memories with my husband that it was totally worth it. Don't get me wrong - I really was in a lot of physical pain. The way I pushed my body that week is not something I could do on a regular basis. But one exciting week can be good for the soul. Here's the thing: I didn't go into that week thinking that I could ignore the fact that I have lupus. I planned and planned and planned with lupus in mind. If I hadn't, I don't think I would have enjoyed myself as much as I did. So if you're planning a trip to Disney World with lupus or another chronic illness, here are some tips:

Before your trip, google it.  My sister-in-law gave me this advice: "Google Walt Disney World with lupus." I'm typically not an advocate of looking to the internet for wisdom, but I was able to gain a lot of helpful ideas this way.

Talk to your doctor. They know you. They know your illness. They know things. Tell them about your trip and ask them if they have any suggestions or special instructions. They're on your side...Let them help you!

Talk to the people you're going with about what you need...before and during your trip. My husband and I have been on enough trips by now that he knows the drill. He knows to help me find shade to keep me away from the sun. He knows that when we're walking uphill, it helps to save my energy if he lightly pushes me forward on the small of my back. He knows how to tell if I'm struggling, what kind of things are especially hard on me, and what he needs to do to help me. But still, I talked to him before we went about the things that I was worried about and what I felt I might need this trip. And it made things SO much easier when we were there!

Pack your day bag well. Carry what you need (in a bag that is comfortable to lug around for long hours). Do not carry an item more and not an item less. Everyone's needs are different. Here's what I had:

     - smartphone
     - portable charger
     - sunscreen
     - sanitizing wipes
     - lip balm
     - inhaler
     - peppermint oil (for pain or to help cool down)
     - small wallet
     - bottle of water
     - sunglasses + eyeglasses
     - eyeglass cleaning wipes
     - meds
     - poncho (This was not originally on the list. But then, Orlando weather happened.)

Listen to your body. Are you hurting anywhere? Are you breathing well? Are you feeling more tired than usual? You don't need to obsess, but be aware.

Be mindful of your triggers. Whether it's a certain food, sun exposure, cigarette smoke, or even spinning in circles (I'll discuss that a little more later), be mindful of things that can increase a flare or symptoms. You may not be able to avoid certain things altogether, but being mindful can help minimize your exposure to them and keep any flares at bay.

Stay hydrated. Drinking a lot of water will help you stay cool and keep your energy level from dropping to zero. (You can ask for a cup for ice water at all the eating establishments. This helps save a lot of money in the long run.)

Rest, rest, rest! How do you rest in a theme park? Get creative! In Disney World, when you get tired, that's a great time to watch a show! Sit when you're waiting in line (even if that means plopping down on the floor). Take a little longer when you're eating your meals. I even reconfigured our hotel room so that I could sit while doing my makeup. Every little bit counts.

While I'm on the subject of rest, I had a worry going into this trip: Will I be able to walk as much as this trip requires? My husband and I came up with a couple of contingency plans. We scheduled an extra day in in the Disney parks just in case I woke up one day and felt that I couldn't do it. This way, I would never wake up with the pressure of feeling like I had to push myself beyond what I was capable of and without the worry of missing any of the parks. We also decided that, if needed, we would rent a wheelchair. Even though we never made use of our contingency plans, it was comforting to know that we had them.

Don't push your body beyond what you know it can handle. Save your spoons! Don't use an entire week's worth of spoons in one day. This doesn't just apply to the amount of energy you exert. This also has to do with the kind of rides you choose to go on. There was one in particular that pushed my body too hard. To be fair to Disney World, they had an intense version and a less intense version. My adventurous husband wanted to do the intense version. He didn't pressure me into anything, but I didn't want to look wimpy, so I didn't voice my concern...even after the multiple warnings on the pre-ride video that instructed those prone to motion sickness or sensitive to fast spinning to change to the other line. I kept telling myself, "It won't be that bad." But as the ride started, my body said, "It IS that bad!" And as soon as the ride ended, I rushed to the restroom and lost my lunch...along with a few too many spoons.

Bring just-in-case medication. I have to take immunosuppressives to keep my lupus in control. So going to a big theme park where I would be surrounded by thousands of people from all over the world is risky business. As I was packing for the trip, I said to myself, "I am not going to need all this extra medicine." I was wrong. Two-thirds of the way through the trip, I felt something scratchy on my throat and didn't have any just-in-case meds to take care of it right away. By the time I came back home, my immune system had gone into attack mode and caused my throat and thyroid to become swollen to the point where I was in a lot of pain and had a hard time breathing. A few days later, I had a six-hour adventure of being shuffled from clinic to clinic to have an inordinate amount of tests run to make sure I wasn't in any serious danger, all to find out that it was just a virus - a very stubborn virus that is taking its sweet, precious time to go away. Oh, how I wish I would have just packed some extra vitamin C and Mucinex!

Schedule rest before and after the trip.
If I had a 9 to 5 job that I would have to return to the day after arrival (like my husband), I wouldn't have been able to push my body as hard as I did. I have a light schedule during the summer months, and I have the added benefit of being able to control my hours, so I planned for a possible post-Disney lupus flare. Don't just hope that you will magically get the rest you need. Plan for it!

The goal is to make a lot of great memories - not to do everything. This is really hard when you are a type A personality. It is so easy to get task-oriented in a theme park. There are so many wonderful things to do! But unless you are going to be doing multiple days in one park, you simply can't do it all. We did two full days at Epcot and still didn't do everything that could be done there. There are so many things we didn't have time/energy to do, but our days were full and we came home with a lot of great memories we'll hold onto forever.

Choose to focus on good things. When your body is not working or people start acting ugly in the lines, choose to focus on good things. I'm not saying to ignore reality. (That would go against what I said earlier about listening to your body.) But don't let frustrations be your focus. And don't let your health or other people decide your emotions. Going to Disney World is a wonderful privilege, so don't waste your time there on negativity. There were a lot of things that could have made me feel down, but I chose to focus on my beautiful surroundings and the wonderful opportunity I had to get away with my husband. So every time something not-so-good happened, I would say, "I am not going to let that get me down because I am in the happiest place on earth!"

Have an amazing trip!!!

#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.