Wednesday, November 12, 2014

To treat people with respect

You brought them into this world. You need to help take care of them.
-Housing agency employee

Let me tell you the full story. Settle in.

My mom was considering her housing options. We were unsure whether or not she would qualify for assistance through Section 8. We called the housing agency in the county my mom wanted to live in to ask their requirements.

It was difficult for me to communicate with the lady who answered the phone. We had a hard time understanding each other. I was looking for specific income and asset thresholds. She was more focused on defining income. At the time I made this call my mother was unemployed and I made the mistake of saying she had no income. The lady on the phone explained to me that any money or goods my mom received was considered income. She actually said, "If you buy toilet paper for her, that's income."

She also refused to believe my mom was currently living in a house without running water.

After asking repeatedly, the lady would not give me specific "income" and asset qualifications. I was frustrated. I considered calling the state housing agency to complain about the level of customer service I received. Instead, my mom and I decided to give this lady the benefit of the doubt. I had called at lunch time. She may have been having a bad day. I may not have communicated well with her.

My husband works in the IT department of the state housing agency, so I asked him for help. Within minutes one of his co-workers provided me with the information I was looking for. My mom would qualify for Section 8 assistance. The next step would be to go to the local office during the two hours each month when they allow people to sign up and put her name on the waiting list. (The wait is generally six to twelve months I was told. When your name comes up, you officially apply and then receive assistance if you qualify.)

A couple weeks later we pulled into the parking lot of the local office. It wasn't as crowded as we had anticipated. My mom confided to me on our way in, "I hope they have a private area for us to give our information. It's embarrassing to say all of that in front of other people."

A paper sign on the door told us what would be required when we stepped through. (Basically, if you can't provide this information, come back when you can... during our two hour window next month.)

Once inside, a lady standing behind a tall desk in a lobby area asked us to take a number and pointed to a room where everyone was waiting. With that one sentence I matched her voice to the lady who had answered my phone call.

We took our number and found seats in the room. People were making small talk and "the line" was moving quickly. Every few minutes a worker would emerge from the hallway and call a number. I assume those people were interviewed in offices. We weren't able to see or hear them after they walked down the hallway.

The lady in the lobby was also interviewing people. She would not come to the room, but simply called the next number from her desk in the lobby. We didn't have any problem hearing her, or the people whose applications she was taking.

I hoped we would get another worker.

People in the waiting room were mumbling about her rudeness.

I could hear her interviewing a man whose face I never saw. He worked in the automotive field, but things had been slow for the business that employed him.

"Right now we're living on $330 a month," he said.

He continued to answer the questions but there was a sense of urgency in his voice. "How long will it be?" he asked. "I really need something soon," he said. "Is there any way I can get help quicker?" And finally, "I just really need a place for my kids."

"Well, you brought them into this world. You need to help take care of them," the lady said.

I couldn't believe my ears. My mom and I looked at each other, wide-eyed. There was a visible and audible reaction around the room.

"I don't think that's her place," one said.

"This is worse than the food stamp office," another said.

I was seething. I pulled out my cell phone and began typing a text to my husband. I would find out how to report this lady. That was just inexcusable!

Before I could finish the text my mom's number was called. By the lady. I wanted to stall, but my mom was already out of her seat. She told me later she had decided immediately to be as overwhelmingly nice to this lady as she possibly could be.

The interaction went well. I felt ready to pounce on her if she said one thing out of line to my mom. She didn't.

I searched for a name tag, a badge, a business card that would identify her. I thought I remembered her name from the phone call, but I didn't feel like that was certain enough. What if two workers sounded similar? What if I remembered the name wrong?

I wondered if anything I might do could affect my mom's application. I decided that would be inappropriate and my husband could again connect me to the right people at the state level if that were to happen.

With her application complete we were ready to walk away. I felt like I needed this lady's name to report her, and I didn't know any other way to get it than to ask. So I did. And she told me.

There we stood with the desk between us. To thank her and walk away felt disingenuous. She was the person I was ultimately trying to reach. She was smiling and I was smiling. She seemed almost... open.

Before I could stop them, the words spilled out of my mouth: "I'm sure you have a tough job, but I feel like you've been really insensitive to people this morning."

She didn't seem open anymore. "How have I been insensitive?!"

I could have made a list. Truly. But I couldn't get that man out of my head, and probably if not for that one interaction I wouldn't have said or done anything. So I planned to start with him.

"The gentleman who was here earlier. You told him that he brought his kids into the world and he needed to help take care of them. That wasn't very nice and I don't feel like that is an appropriate thing for you to say."

The seconds felt like hours. What was going to happen next? Did the people in the room hear me? Did they feel empowered? Should I ask for a supervisor?

"Maybe you should take some additional sensitivity training or something."

Did I just say that out loud?

"We only have two hours to process everyone's application," she said.

That's not an excuse to be rude. Maybe you should allot more than two hours a month for this.

She had already called the next number. I wasn't sure what to say or do next, so I walked out the door.

Sitting in the car, shaking and crying the second-guessing began. Should I have stood up immediately and introduced myself to that man and addressed the misbehavior as soon as it happened? Should I have not said anything and just filed a formal report? Should I have not left until I spoke with a supervisor or saw some tangible change or result? Did I just make things worse for the people left waiting?

And the question I've been mulling for weeks: What should I do now?

I thought about filing a formal report. I thought about contacting the local newspaper and doing some investigating, possibly even undercover. I thought about going to the housing agency during their two hour window every month and interviewing people to see how the interactions made them feel. I thought about also doing that at the local food stamp office. Sounds like they may have some customer service issues there, too. Or just going and talking to the people and brainstorming ways to help them in less than six months, in more than a two hour time frame. Or offering to sit or stand with them as they answered the questions. 

I thought about surveying my friends about how to handle it. I thought about writing an open letter to social service workers, asking them to strive for kindness in their interactions with their clients.

So far, I haven't done any of those things. 

The other night a blog post popped up on my newsfeed retelling the story of a woman standing up for the mistreatment of a minority couple in front of her in the grocery checkout line. I thought back to this incident and felt like I could relate to her.

As I have reflected on that encounter that day, I have felt a range of emotions. The lady's words underscore many popular misconceptions about impoverished people and those who seek assistance from the government. There are many examples of how programs meant to help don't quite reach what they're aiming for. And the people's reactions and interactions only highlight the destructiveness it can bring. 

I'm not sure I did the right thing that day. On a scale, I don't think I landed at the bottom. But my reaction was not perfect by any means. And I don't even know what kind of impact it had. I hope the lady became more aware of how she was treating people. I hope the people in the waiting room were encouraged and reminded that even though they are asking for a hand up doesn't mean they should be talked down to. But I could have just made things worse. I may never know.

Still, I can't help but thinking that doing something is better than doing nothing. 

What if we all stood up in our little, imperfect ways? What if instead of grumbling or acting out passively or just wallowing in apathy or despair or hopelessness or powerlessness we chose to stand next to our brothers and sisters -- like we would for our brothers and sisters -- when they are so blatantly wronged? (And with the understanding that those on the other side are also our brothers and sisters.)

I think we could make a difference. 

And I think people are already making a difference by standing against injustices in their own quiet and peaceful ways. I hope that by sharing experiences like these we can spur one another on. I hope this is just the beginning of something beautiful.

Note: This post was forwarded (without my knowledge) to the state housing agency and I have been contacted personally by staff in the Frankfort and Louisville offices. While the housing agency that we had this experience at only falls under the jurisdiction of one, both have expressed deep apologies that any housing employee would act in this way. Both have extended offers to help my mom in any way possible. In short, I have been overwhelmed by the immediate and heartfelt response. And am reminded that while some government employees are not stellar, many are devoted, hardworking and often don't get the recognition or respect they deserve.

Monday, October 27, 2014

30/30 Bucket List: A week without television or internet

Life and business are about human connection. And computers are about trying to kill you in a lake. To me the choice is easy.
-Michael Scott, Dunder Mifflin Manager, The Office

Initially, I was excited about the weeklong no internet/no TV challenge. Sometimes I feel tied down by the internet and online communication. Sometimes I feel completely burnt out on television. I thought this week would be one of freedom from technology, when I could explore my inner depths and get in tune with the world around me. I intentionally planned to do this challenge in the late fall so I could spend a lot of time outside admiring the unique beauty around us this time of year.

That’s not what really happened. 

As is often the case, things kept coming up to push out my technology fast. Finally I decided if I was going to do it during peak foliage season, I would have to do it this week even though it wasn’t necessarily ideal. 

I had originally planned to start on Sunday, but pushed it out a day when I babysat some sweet nieces who are easily entertained by shows on Netflix.

I tried to get the online banking and bill pay in order so I could not log in for a week. I tried to think ahead to all the activities I might do during the week and look up the information I thought I would need. When we went to bed Sunday night I made sure to set the timer on the TV to shut off before midnight.

My normal routine involves checking my email when I first wake up. Actually on nights that I can’t sleep I use my cell phone to check the time and I also check any emails that come through.

The little icon on the lock screen of my phone told me a dozen emails had arrived in my inbox overnight. I told myself these were most likely spam or junk. It became much more difficult when emails filtered in throughout the day to a folder reserved for friends and family.

That first day the hardest thing to manage was my fear of messing up. I was so afraid I’d fall into my normal internet and TV routine and not realize it until it was too late. I was so scared that as I sat chatting with a friend that day, she turned her laptop around at one point to show me a flier on her screen. My face became so stricken she thought I had fallen suddenly ill until I told her I couldn’t look at the webpage because of my challenge. We had a good laugh.

I was surprised (though my husband was not) at how long it took me to fall asleep that first night. I use the television show Friends to fall asleep. Sometimes I can’t make it through the opening credits. Usually I don’t even finish one show. I’ve developed a full repertoire of sleep techniques so I figured they would be my fall-backs this week. But even resorting to an Advil PM one night or becoming physically exhausted after a day of rock climbing didn’t help. On average it took two to three hours to fall asleep and I usually woke up throughout the night and struggled to fall back to sleep.

By the second day I was starting to feel like the challenge was a bust. It wasn’t extremely difficult, impactful or enlightening. It just was a thing I was doing for a week. I surmised that it was possible that I just wasn’t very attached to technology. (I am notorious for keeping my cell phone on silent and ignoring or not returning phone calls.)

I had wanted to spend the week outdoors, but my health and my schedule seemed to be preventing me from much hiking or exploring. I felt like Tuesday might be my only day to go out on my own. There were several trails and areas I had hoped to visit during this week and struggled to pick just one, but decided on Natural Bridge. I felt comfortable (though this is not advisable) going there by myself. It is my favorite place on earth AND I hadn’t visited yet this year. To go a full calendar year without visiting Natural Bridge is a travesty I hope I never endure.

As a side note, I saw a lady who had taken the sky lift up being helped by two men accompanying her. She was obviously elderly and in poor physical condition. But she was walking slowly, with help, to see the bridge. Later in the hike, I stopped to take pictures for an elderly couple visiting from California who were attempting a full trail even though the lady had knee replacement surgery. Both of those women determined, despite their physical ailments, to explore this place gave me hope and encouragement for my own life. Despite being ill, you just always keep climbing.

On day three, when my phone icons told me I had more than 100 emails waiting, Johnie mentioned he could turn data completely off and remove the icons altogether. I allowed him to do this and worried I might be even more tempted to check my email not knowing anything at all about how many messages I might be receiving. Not seeing the icons actually ended up helping though, because I just kept telling myself that I probably wasn’t getting any important emails anyway.

I also had a moment of clarity that day that seemed to add some reason to the whole challenge. I don’t want to talk too much about my health. I don’t want everyone to think “Oh it’s just Amy talking about being sick again.” But my life has been changed and as I’m trying to process those changes things come up and out that I feel compelled to write about and share with others. And one thing I have been recently struggling with is embracing (or more accurately, discovering) my new identity. I am not capable of everything I used to be capable of. And I am still adjusting to that.

Part of that adjustment is learning to find my worth and value outside of what I am able to do. I have been trying to identify ways I am inappropriately measuring my worth and to seek out healthy and correct gauges. (I may blog about this in the future.)

I realized that I expect or hope for some of my value or worth to come from online messages. I have received some great emails over the years. Johnie and I fell in love with each other through emails and instant messages. I think it is a powerful and useful tool we can use for good. But when I don’t get the response I was hoping for that should have no impact on my value or my worth. Sometimes I have let that be the case. The fact that someone didn’t reply to my email must mean they don’t love me. Or worse, that there is something wrong with me that makes me unlovable or less lovable. That is not correct. Even if my inbox is empty I am still worthwhile. My value is not tied to emails. Or communication from people. Even when we don’t hear what we need to hear (in any form) that doesn’t mean we aren't worth it.
It wasn’t until day four that I began missing television. My brain was fried that day and television is how I zone out. I felt no outlet to shut everything (internally) off completely. I ended up finding a mindless non-internet-using game I had downloaded on my phone a long time ago and hadn’t played in over a year. It was the closest thing I could find to fill the TV void.

On day five Johnie walked in on me crying and this was the conversation:
Johnie: What’s wrong, Amy?
Me: I’m just thinking about things. (It was understood these things were unrelated to the challenge.)
Johnie: When is your challenge over?
Me: Monday. Do you think I need the internet?
Johnie: I was just asking.

I haven’t decided yet if the diversion from thoughts provided by the internet and television is a good thing or a bad thing. On one hand, I feel like we can avoid and numb our thoughts to an unhealthy level, completely ignoring things that need to be dealt with. On the other hand, it takes time to work through things and sometimes we need a break. I think it is hard to find the balance of when to engage in thoughts and when to rest from them. I fear that I sometimes try to tamp them down or ignore them a little too much.

By day six I was feeling more adjusted to being offline. There were many things that popped up throughout the week – weather forecasts, recipes, things people wanted to show me online – that were unexpected moments when I would have automatically turned to the internet. I felt like I had worked through most of the surprises. And we had a day of rock climbing planned. I figured it would be an easy day for the challenge.
But once more I was surprised as all my friends went home that night and uploaded pictures online. Pictures everyone else could look at and talk about, but I could not see. It was tough to watch my husband look through online pictures without peaking over his shoulder. But I refrained.

The final day of the challenge involved more averting of eyes and reminders I’d see everything the following day as friends continued to share and discuss things from the day before.

I was sure that last day would be easy. But, I must admit, by this point I was done learning and growing. I’m embarrassed to say I began counting down the hours to midnight and seriously questioned ending the challenge a few hours early. (Really, what would be the difference between checking my email at 8 pm versus 8 am?)

Also, Johnie and I decided to go out for dinner and were sat in an area surrounded by televisions. Sports were on and I wasn't interested at all, but it felt like cheating. With a red face, I asked to be seated in an area without televisions and thankfully the server graciously moved us.

As I’ve reflected on some of the positive aspects of this challenge, I do feel like I may try to remain more disconnected from online media and communication. I think that instead of being always online – always connected via a smart phone with messages streaming in, I may delegate a couple times each day as online time, or I may delegate one day a week as an internet-free day.

I also feel stronger to fast from other things in my life. I have always struggled with fasting in general (and especially fasting from food), but I feel like I can look back on this time and think about how I calmly went through a week without email or television.

I was texting the friend who issued this challenge to me and I admitted to her it has taken some discipline not to check my email – that has been the hardest thing. She reminded me of a time in college when our internet went down unexpectedly and she walked into our apartment to find me hunched over my desk weeping in the middle of the night. Thinking something tragic had happened, she rushed to my side and asked. Through heaving sobs I said, “I just want to check my email.”

The fact that I can now go an entire week without email and without a meltdown shows growth, right?

Thursday, October 16, 2014

A year with the lupus.

A chronic illness diagnosis is not a death sentence. It is a junction in your journey through life that takes you on a different direction than you desire or anticipated. There's no doubt that your chronic illness has wounded you. But a wounded warrior gets up, in spite of the wounds, and moves forward again, and again, and again.
-Richard Cheu, Living well with chronic illness: A practical and spiritual guide

It was one year ago when I was told I have lupus. It hasn't been the easiest. In fact, I am just starting to accept that I might actually have lupus, like lifelong lupus. Some days. Some days, I still can't help but think this is just a phase I'm going through. That I'll look back on this as those years I was really sick and we thought it was lupus. I have trouble imagining that I may feel this way for decades.

There are days when I feel so defeated. When I think my sickness stole my future. When I think of all I've given up, all that has been taken away. When I feel so crummy and don't even have anything to show for it.

But then there are days like October 4th. When I have the strength and the freedom to say yes to hiking with friends. And when those friends actually mean rock climbing when they say hiking.

See that mountain. I climbed it. Without any special equipment.

That's not as stupid as it sounds. Well, maybe it is. (But we didn't start at the bottom... If that makes it better.)

I've been on a hike coordinated by this friend before. It didn't involve clinging for my life to a rock several hundred feet above the actual ground. It's just that on this occasion I didn't figure out he expected us to scale a rockface until I was already on my way up. (Sometimes I'm slow and naive, you know.)

We stopped for lunch on the first (and easiest) ledge and my brain started putting some little details together: (1) The hike we were on was a loop. We weren't going to backtrack. (2) I saw no way off the ledge but to backtrack.

Already, I had been informed the hardest part of the hike was over. So I asked, "Jeff, you said we make a loop, so where do we go from here?"


I looked up but didn't see the top and wasn't going to lean out to try. There were a few more ledges between the top and where I was, and each time I was told: (1) This one is the hardest in whatever way. (2) It is easier to go up than down.

We passed people along the way who had reached their own summit. And our group ended up splitting into two. Some chose the harder way back down.

I stood on the last ledge before the top and didn't know if I could make it. But I didn't know when I'd get another chance to try. Foothold, then handhold. One after the other. Inch by inch I ascended. Or more specifically, crawled. And prayed. And at one point screamed for help. (That really got a response!)

And I made it to the top and I felt so accomplished. I felt even more accomplished when I looked back later in the hike to see what I had actually climbed. I never would have believed I was capable of that. If I would have known how big that mountain was before I started, I never would have even tried.

As I told my husband on the way home that night, I have felt defeated so many times this year that victories like that become even more meaningful.

And there was so much about climbing that mountain that metaphorically mirrors my own journey with sickness. I never would have thought I could handle it. I never would have thought I could be sick and mostly joyful. Grateful. Hopeful. By the grace of God, I have.

Within hours I started feeling the effects of the day's conquest. Ibuprofen, extra herbs, a soak in epsom salts and essential oils, a heating pad and at the beginning of those three days with painfully sore muscles I could only feel angry and frustrated.

I'm too young to feel this bad.

The old Amy could have recovered from that in less than a day. Ironically, the old Amy is a few years younger than the new Amy and is in much better health. I compare myself to her sometimes.

But the old Amy lived life with more fear. The old Amy took fewer chances. I knew the old Amy pretty well and I'm putting my money (well, you know, if I was actually earning money these days) on she wouldn't have even tried.

And long before the pain eased, the anger melted.

I am weaker now. But in ways I am getting stronger.

And how many people in the world never even get the chance to try something like that for fun? And how many people couldn't even do it at all even if they did try?

I am blessed. With health and strength and much larger margins to rest than most people. (And so much more.)

A few days after the climb I was reading a list I made shortly after my diagnosis of important things I wanted to hang on to. On it: Continue to hike the mountains of my home.

And so far -- thankfully -- I still am able to do that and almost everything else on the list.

I don't know what the next years hold for me, but I am so grateful for the blessings of this one. And I know whatever I may face ahead, I will make it triumphantly (praise the Lord!) to the top in the end.

There's a peace I've come to know
though my heart and flesh may fail.
There's an anchor for my soul.
I can say, "It is well."

-Chris Tomlin, I will rise

Thursday, September 18, 2014

30/30 Bucket List: Practice a Spiritual Discipline

The purpose of the Spiritual Disciplines is the total transformation of the person. They aim at replacing old destructive habits of thought with new life-giving habits. Nowhere is this purpose more clearly seen than in the Discipline of study. 
-Richard J. Foster, Celebration of Discipline

In the spirit of spiritual discipline, let me start with a confession: After getting a line-up of expensive, pampering "challenges" in my bucket at my party, I did a bit of coaching for my friends who couldn't attend. I asked them to add to my bucket, but also asked, very politely, that their challenges wouldn't cost me a lot of money or make me feel completely spoiled.

One of those friends challenged me to practice a spiritual discipline that I haven't tried much. I read that as practice a spiritual discipline I could use a lot of improvement on and felt like the field was pretty wide open (save for maybe solitude). I've tried -- and failed -- at most all the spiritual disciplines.

One of my post-job goals was to read the Bible more often, so my knee-jerk was to pick that one. I hadn't been doing so well with it. But I wondered if I might should challenge myself to a new spiritual discipline that I wasn't already actively working on.

I scanned my Celebration of Discipline book for inspiration (I have read this book several times and HIGHLY recommend it). I briefly considered submission, and even more briefly considered confession. But, in the end, I just felt like I should continue to focus on developing discipline in my reading and study and meditation of the Bible.

I have never really dug deeply, thoughtfully, consistently in the scriptures for my own edification. And for many years I have carried around shame and guilt because of it. I have made many plans. Year-long reading plans that fizzle out in a few months, or weeks. Inspired by people who read with their morning coffee, I tried to read my Bible before doing anything else. That didn't last more than a few days, and carried with it the added guilt of "not putting God first."

I have tried to read for a certain amount of time each day, and been unsuccessful. All of my attempts have failed and left me feeling embarrassed and unworthy.

And honestly, I don't even know why this has been a struggle for me. I love to read. And I love the Bible. It is well written, has an amazing plot, and is everything I find in my favorite books: True story, unpredictable twists, and good prevailing over evil even against all odds. Plus, you know, God wrote it. When I do read and study, I get a lot out of it. A lot.

So the guilt heaps on.

I had decided this time around to allow myself a little more grace. I suppose I would need to take tiny baby steps. In the beginning, I would put no constraints on my Bible time except to aim for it every day. Whether it was fifteen minutes or two hours, whether I covered one verse or one book. The goal would be to simply open the Bible and spend some time there every day. If I wanted to stop and think or pray about a scripture, I could. If I wanted to stop and study something, I could. Or if I just wanted to read and only read, I could. If I wanted to skip over something, I could. (Yeah, I cringed a little when I wrote that last line... I don't advocate intentionally ignoring sections of scripture but for the purposes of developing a habit of reading, I really needed permission not to necessarily start in Matthew or Genesis or have to trudge through Numbers just because that book was next up.)

And with those new lax guidelines, I would say my Bible time improved by about ten percent. Cue more feelings of defeat.

I'm not working. I have no kids. How can I not manage a half hour of my time reading the word of God? How pathetic am I?

So, I added: I would not beat myself up if I missed a day. I would stop focusing on what I hadn't done in days past and start focusing on what I could do with the new day I had been given.

Fast forward a bit.

I finished up a short walk on the treadmill and decided that I would read a few chapters before soaking. (I have poor muscle recovery and soaking in doctored-up water after a treadmill walk seems to help with that.)  I specifically opted not to read the Bible while soaking so I would have the freedom to take notes or look things up if I wanted to.

These details are important because I feel like I haven't been thoughtful in the past with trying to carve out Bible time. I really was trying to settle in with the scriptures at the best time in the most quality way possible.

I switched to the Bible on my Kindle and began reading in Acts. Stephen's martyrdom. I was immediately drawn in and imagining what it must have looked like to see Stephen's face glowing (maybe it wasn't, but I picture it radiantly glowing) the way the scriptures say ("like an angel's").

I couldn't help but think of the Christians who are being martyred today. How even all these centuries later, people are still dying like Stephen died. I wondered how similar some of their stories might be to Stephen's. And I felt thankful for my freedom to worship and proclaim Christ openly.

During all of this a few hunger pangs nudged me, so I decided to get a snack while I finished reading. Still engrossed in the story, I walked, kindle in hand, to the kitchen. But before I could open the refrigerator the voice started:

Can you not stay focused for fifteen minutes? What is wrong with you? You are reading a story written by God about one of the first Christian martyrs and you can't have the reverence to wait for your food. You really are pathetic.

And that's when I realized: One of the reasons I've always failed at this is the quickness with which I criticize my efforts and deem them not good enough.

Standing there in the kitchen I felt like today's reading didn't count. I had failed and would have to try again later.

Defeated again, I began to think about this more. And that's when I concluded: Even quick, distracted, inconsistent study is better than no study at all. And just because my reading now is quick and distracted and inconsistent, it doesn't mean it always will be. Even as puny as it was, it prompted me to pray for Christians being persecuted today. That shouldn't be discredited.

I don't think such negativity is a proper reflection of the way God feels and I don't think I'm alone in engaging in this kind of negative self-talk.

I had planned on blogging about this particular challenge after I had completed it in some way. But for anyone else who beats themselves up over every little shortcoming, I thought it important to go ahead and share this step in my journey. I'm making it a point to stop criticizing my efforts, and I hope you all do too.

I hope later in the year I will be able to say that I have become more practiced and disciplined in my reading and study of the Word. For now, I am just going to celebrate taking a significant step toward breaking destructive habits.

Monday, September 15, 2014

30/30 Bucket List: Watch more movies like Frozen

That's what I do. Watch movies and read. Sometimes I pretend to write, but I'm not fooling anyone. Oh, and I go to the mailbox.

- Nicole Krauss

It took 118 days for me to miss cable.

I was standing in the kitchen putting the lunch dishes in the dishwasher and feeling wiped out. I was tired and recovering from a cold. Not yet exhausted enough to sleep, not enough energy to read a book. And no DVD or Netflix offering came to mind.

I wish we had cable and I could just turn on the TV and watch whatever is on. 


Did I just miss cable? How long has it been?

I blamed it on the upcoming season premier of 19 Kids and Counting that I wouldn't get to watch. But I was missing the convenience of just hitting one button and having hours of mindless offerings to watch. (Or, as I prefer it, to sleep through.)

I decided to search Netflix for something.

These unemployed days have not been the most productive of my life. (Though I am trying to convince myself that things like productivity and efficiency aren't as important as I've always made them out to be.) And of these unemployed days, this one would be especially unproductive.

But as I scrolled through the Netflix headings, I decided I could at least mark one thing off my bucket list.  I just had to find a movie vaguely similar to Frozen and watch it. Much easier than going to Europe or completing a spacewalk.

I settled on Ella Enchanted. Not the best movie I've ever seen, but also not the worst. It had a princess and she had to break free from what was given to her as a gift but had become a curse. I think it counts. Plus, I do love Anne Hathaway.

This has been far from a TV-free summer. (I discovered How I Met Your Mother on Netflix shortly after I lost cable.) But before we dropped the cable, there were plenty of times when turning on the tube was my default when I just wanted to zone out.

It made me wonder how much time TV had sapped from my life without me even realizing it.

Another of my bucket list challenges is to go one week without any television or internet. It is one I am looking forward to.

I am hoping to complete it during a week when the weather is nice so I can distract myself with the beautiful fall foliage. But even as I plan and prepare, I wonder what dependencies on television and internet I will uncover unexpectedly.

Or I could just distract myself with another movie.

Monday, August 18, 2014

30/30 Bucket List: Go to Europe

We are ready to go.

-Viktor and Kristen Rozsa

The night I met Kristen she was wearing a strange hat.  She was trying to be a toadstool.  Her daughter, Emily, was dressed as a garden gnome.  It was a costume party at a mutual friend's home.

The next time I saw her she was wearing another strange hat.  She was trying to be a salt shaker.  This time Emily was a princess and new little baby Gabi was a pink fuzzy bug.  That was also the night I met her husband, Viktor, who was posing as a pepper shaker.  It was a year later at a costume party at a mutual friend's home.

By the time we would arrive at the annual Halloween party the following year, she and Viktor dressed as baristas with three (add newborn Lillian) of the cutest little frappuccinos ever, we would greet one another with warm hugs. As friends. And I would have seen her throughout the year -- dressed in normal clothing -- more times than we had kept track of.

It was a few months after that second party, after we had attended a dance recital for our friends' daughter with the Rozsa's and helped our friends move with the Rozsa's and celebrated a new page -- a new building -- for our church family with the Rozsa's, that Johnie and I sat on our couch to discuss what we felt like God was leading us to do in the upcoming year.

We do this every so often and it isn't unusual for us to have different goals and visions and dreams.  When we agreed in unison, even in the details, that we both were compelled to "support Viktor and Kristen" we knew that was one thing we would do right away.

Viktor and Kristen were (and are) preparing to become long-term missionaries in Hungary with One Mission Society.  Viktor grew up in Hungary and it was at an OMS English Camp there when he came to know Christ.  A few years later, he would travel to the U.S. to complete a theological education in hopes of returning back to Hungary with OMS to reach youth for Christ in the same way he had been saved.

It was in the U.S. that he would meet and marry Kristen, an Indiana girl with a heart for missions.  And together they decided to devote this season of their life to reaching Hungary for Christ.

I could write a whole series of blog posts on the work they have done and the sacrifices they have made in their efforts to get to Hungary.  And I'm sure I don't know close to all of it.  (But they would be embarrassed, and possibly even upset with me, and that would take a long time to write anyway.)

I will say: Their passion, their willingness to serve and their unique experiences and gifts make them stand out in a spectacular way.  Very, very rarely do we meet missionaries with the education, the fire and the deep-rooted knowledge of the culture to send to foreign fields.  That was obvious to us right away and is obvious to anyone who spends time with them.

But we have been blessed to get to know the Rozsas not just as missionaries, but as people.  As friends.  In the last year and a half, they have celebrated with us and mourned with us and stood beside us in the nitty gritty of everyday life.

And so when I pulled out the slip of paper from the bucket filled up at my party that said "go to Europe" everyone thought they knew the culprit: The Rozsas. 

They had already invited us to visit them in Hungary.  More than once.  And Johnie and I have always been open and eager for that possibility.  In fact, Viktor and Kristen hope to make it to Hungary before my next birthday and it isn't out of the realm of possibility that Johnie and I might visit them there.  In the next twelve months.

But they weren't responsible for this particular challenge.  Another party guest, who wasn't very familiar with the Rozsa's mission dreams, wrote that one down.  And he even apologized later when he realized I only had a year to complete such an expensive challenge.  He thought it was a true "before you die" bucket list.

Holding that slip of paper, I felt a twinge of resignation that I wouldn't be able to complete my bucket list this year. But I also had a bit, a tiny glimmer, of hope.  Hope that God would actually pull something off so grand as to send my friends to Hungary as missionaries and allow me to visit them there all in just a year's time. (Though Viktor and Kristen have been working toward this goal for several years.)

Because here's the deal: I've already decided that if I go to Europe in my thirtieth year it will be to visit the Rozsas.  But here's the even bigger deal: Whether or not I go to Europe ever doesn't really matter.  What really matters is getting people like Viktor and Kristen, full of heart and talent, there as quick as we can.  So they can join the exciting kingdom work already happening.

And as sad as it makes me to think of this family I have grown to love and depend on moving so far away for several years, it makes me even sadder to think of them not getting to live out this dream -- this calling -- they have given everything for.  It makes me even sadder to think of never knowing what positive difference they could make in Hungary.

Reading "go to Europe" instantly had an automatic, silent, "to visit Viktor and Kristen" attached to it for me.  And in the days following it was like "help send Viktor and Kristen" was added to my list as an extra challenge.  And so that is why this is the first challenge I am tackling. 

Not many people read this blog, but if each of you took the time to help with this goal it could make a huge difference.  And that is what I am asking of you.  Do what you can:
  • Pray. This isn't the cop-out option.  It's the most important.  Pledge to pray for Viktor and Kristen, and Emily and Gabi and Lillian.  That they will remain strong and courageous.  That they will share the good news boldly when they get to Hungary.  That they will be given the resources they need to get to Hungary.  Pray for them daily.  Pray for their peace in uncertain times.  Pray for the hundreds and thousands of miles they travel each month to be safe and fruitful and as enjoyable as traveling from home to home and church to church with three little ones can be.  And pray for their encouragement and steadfastness and clarity to do what God has called them to.  Because as every missionary (and every human) would tell you, it doesn't always go like you thought it would.  Viktor and Kristen thought they would already be in Hungary.  And they still aren't sure they will get there as quickly as their revised plan would take them, an uncertainty that makes coordinating a move around the world even more difficult.
  • Get to know them. Visit their blog, their missions page, their facebook page.  Follow them on twitter.  Call them or email them.  Invite them to your home or to your church to share their story.  You'll understand what I've said about them if you do.  And -- bonus -- if you live close enough and play your cards right, you might even get some of the best homemade pizza you've ever put in your mouth. Or Hungarian goulash. Or chocolate eclair. Or... I digress.
  • Connect and share.  Tell others about Viktor and Kristen.  Your church family, your friends, your relatives, your co-workers and classmates.  They may be able to help or they may know someone who can.  
  • Donate. If you are able, please consider donating to their mission (click here).  It takes money to get to Hungary and live there. This is impossible to accomplish without the funds necessary.  Every "little bit" is actually quite significant in helping them reach their goal. You can make a one-time donation, or a monthly pledge.  And your pledge can start now, or you can pledge to begin your support once they arrive in Hungary for their term. Small monthly pledges add up.  
On their blog, Viktor and Kristen said simply, "We are ready to go." And their life speaks those words louder than they could even shout.  They just need the resources.  Will you help?

Wednesday, August 13, 2014

30/30 Bucket List

Challenge accepted.
-Barney Stinson

You know that awkward feeling when you're at your birthday party and you see people huddled over some note cards in a corner? Some are giggling. You try not to look directly at them, but you have a sinking suspicion something is up?

Me too.

As I would learn later that evening -- after I worked up the courage to peek in the corner -- my family and friends were creating a bucket list for me. Thirty challenges to complete (and photograph) in my thirtieth year.

I am not sure they realize just how seriously I take these kinds of things. (As evidenced by one card which said simply, "spacewalk." And I do plan to do that, by the way.  This year.) Basically, I had been handed what would become thirty dares to complete over the course of a year.  And the thing about a dare is you have to do it. It's a dare. So you have to. No matter what.

It was with a nervous stomach that I reached my hand in the bucket to pull out the first card. "Dangle your toes in the ocean." Forget dare... excuse to go to the beach!  Because now I have to. This year.

And I have to say my friends were mostly very nice (digging 1,000 pounds of sweet potatoes aside). I got a lot of vacation, evenings out and expensive gift challenges. In retrospect, they were almost too nice. I felt like if I completed every challenge they issued, I'd arrive at 31 a lazy, sunburned glutton.

But still, it is a challenge. A dare. It cannot be ignored. So if I must go on multiple vacations, I will. (I hope.)

And even though spacewalk wasn't the only one that seemed impossible to tackle in 365 days, I have decided to go for it. And for humanity's sake, to fill in the blank spaces remaining in the bucket list with things that might be a bit more impactful than spending thousands of dollars on treats for myself.

Honestly, I don't know if I'll be able to complete the bucket list. But I do hope I have fun (which accomplishes one challenge all by itself!) and make some kind of positive difference trying.

Stay tuned!

Friday, June 6, 2014

Dreams of Writing

Being who you already are no matter the circumstances of your life is what it means to release the art you were made to live.

-Emily Freeman

The writer's group I'm blessed to be a part of asked us to write this week on our secret dreams as writers and what is holding us back from them.  Initially, I wanted to say I quit my job and am seeking out the most meaningful (read: unpaid) writing work I can find.  I've made the leap -- I just don't have any assignments.  I just can't find an audience.  

I wanted to say I'm going for the dream, I'm just failing.

But I spent a few quiet moments to ponder what my dreams truly are.  When I am honest with myself it was never my dream to write for state lawmakers (though that felt like a dream job).  And it isn't my dream now to secure great writing gigs.  It's deeper than that.

The dream is to move people with words.  To inspire them to make their world better.  To reach them down wherever they are and let them know they can go up as high as they would like.  To tell those girls and boys who don't know it yet they are good enough.  They are capable.  To encourage kindness and diligence and dedication to more than just what we see in front of us today.

The moments when that has been possible have been the moments when life felt right.

And here I am with two and a half hours until midnight with the worldwide platform on my computer screen and a group of wonderful women cheering me on and I am running over the reasons in my head why I should sit this one out.

I'm tired.

I don't have enough time to get it right.

I don't want to be late again.

No one will read it anyway.

If they do, they'll think I'm stupid.

I need to get some other things done.

This isn't mandatory.

And the pile of excuses is always there for me.  I can offer them up.  Hide behind them.  Spend my time ticking them off, one by one.  But that is what is actually holding me back, isn't it?  Excuses.

Okay, it is A LOT more than that.  But excuses is a big one.  I'd be further ahead if I didn't cling to them.

The cursor flashes as I decide whether or not to elaborate.

But I'm tired and it's late and I need to get some other things done and this isn't mandatory.

We'll see what tomorrow holds.

Saturday, May 31, 2014

Having lupus, Part 10: My relationship with God

Oh love that will not let me go I rest my weary soul in thee.
I give thee back the life I owe that in thine ocean depths its flow 
May richer, fuller be.

Oh light that follows all my way I yield my flickering torch to thee.
My heart restores its borrowed ray that in the sunshine's blaze its day
May brighter, fairer be.

Oh joy that seeks me through the pain I cannot close my heart to thee.
I trace the rainbow through the rain and feel the promise is not in vain
That morn shall tearless be.
-Oh love that will not let me go, George Matheson, written June 6, 1882

I am no expert.  Far from it.  I may not even be right.  But as I began to put my thoughts and feelings into words, I realized that to provide an honest look into my journey with lupus I would have to talk about God.

I feel like my spiritual life has been so deeply impacted by my health.  While words seem inadequate to explain this, I will offer an attempt to share this profound part of my spiritual journey.

Before my diagnosis, I trusted God.  I even relied on Him daily for many things.  I prayed over my writing and I prayed over my cooking and if something turned out well I knew it was because it had been blessed by Him.

Sometimes I offered thanks for my health, but I never really asked God or credited Him for my strength to get out of bed in the morning.  Thousands of mornings I woke up and rolled out and lived my day thinking that my strength came from the rest I received or the food I ate.  If I even thought about it at all.

Lupus showed me very clearly I actually have no control over anything.  If I am to get out of bed, it is God who will provide that strength.  If I am to have energy, it will come from Him.  (And that isn't just me -- it's the same for all of us.  I just never realized how true that is until now.)

He will be responsible for my healing, too.  Not in a refuse-all-types-of-medical-intervention kind of way.  But the success I have found with my herbalist is only because God led me to him and He blesses that treatment.  And my future good days are gifts from Him.  However it is that I am finally cured of this, it will be all to His credit.

Which begs the question: Why doesn't He just heal me now?  Why didn't He just protect me from lupus to begin with?

My answer is I don't know.  (I also don't know why He chose to deliver me from poverty and from abuse and from a great number of other things.  And I don't know why He has protected me from accidents and cancer and pain of all kinds.)

But while I have lupus, He is working things out for good.  I hope that is as obvious to everyone around me as it has been to me.  That is not a blase, glossed-over answer.  I can say that God is good ALL the time with confidence.  Mine is not a weak or a blind faith.  It has been tested and tried.  I have wrestled with God.  I have tried other ways.  I do not always know and I do not always understand, but I can see clearly that His ways truly are higher.  And He is loving beyond words.  He is true perfection.  And if He cannot be trusted then trust cannot even exist.

I am still learning the depths of those heavy truths.  His patience is immeasurable.  (For you, too.)

I was not (and am not) happy to be sick.  Lupus would have been one of the very last diagnoses I would have picked for myself.  God has heard a lot about this from me.  But I have come to realize that we all have burdens and struggles in this life.  The label for one of mine is lupus.  That doesn't make life any harder or any easier for me than for anyone else with their own burdens and struggles.

Though I may feel like one at times, I am not a victim.  I am not undeserving of lupus.  By that I mean I am not some extra special person exempt from any of the hard times faced by all humans in this fallen world.  If anyone should have been exempt it was Jesus.  And He bore it all.  So I am just like all the other people.  Waiting for the Lord to fully redeem us.  (He is and He will.)

And I have felt the Lord walk closely -- hold tightly -- to me every single inch of this journey.  He has given me strength I could never have imagined.  And He has sent me so many sweet blessings along the way.  Poignant gifts to remind me of His steadfast love.

I am not thankful for lupus, but I am thankful that God used it as a tool to draw me closer to Him, closer to my husband, closer to many people in my life.  I am thankful to have been given this new perspective on living.  I imagine I would have continued to waste years of my life if I didn't come to realize how precious time is.

Like the rest of the world, I am a work in progress.  And I am so thankful to serve a Savior who loves me so dearly, who will not let me go.  Who is making me whole in every way and carrying me tenderly through until I am (and He is) finally complete.

Blessed be the Lord who would not give [me] up.
Blessed be the Lord for His unfailing love.
The snare is broken and [I] have escaped.
[My] help is the name of the Lord.
Blessed be the Lord!
-Had it not been the Lord, Leonard Smith, Jr.


This post is the final in a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 5: More on the pit

Part 6: Exhaustion

Part 7: Saying no

Part 8: Taming fear and anxiety

Part 9: The scapegoat

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.

Tuesday, May 27, 2014

Having lupus, Part 9: The scapegoat

The search for a scapegoat is the easiest of all hunting expeditions.
-Dwight Eisenhower

Born from my splash into alternative medicine shortly before my diagnosis, the rash of remedies suggested to me by well-meaning acquaintances after my diagnosis and -- of course -- my lifelong quest for self gratification, I began looking for benefits to chronic illness quickly after receiving the news.

Maybe since lupus was to blame for a lot of bad stuff in my life I could also use it to my advantage sometimes.  And that was the beginning of my plan.

Already I was swigging a concoction of herbs each morning and had listened to all kinds of unscientifically-proven treatments.  I felt willing to try anything.  So why not try anything?  And see how it would affect the lupus.

Maybe my lupus symptoms would disappear on a beach in Mexico.  Worth a shot.  (Still haven't tried this one, but plan to and also have learned that one must be patient through long trials to reach the full effectiveness of some treatments.)

The stars aligned one week when I ate out several times at some of my all-time favorite restaurants.  I also felt really good that week.  Coincidence?  I prefer to call it restaurant therapy.  And rank it as highly effective.

Might lupus symptoms rise and fall based on potato chip or dark chocolate consumption?  Only one way to find out.  Could Coke alleviate symptoms?  I'm not willing to say no yet.

And then: Might excessive dish washing cause a flare?  Maybe.  I've decided not to risk it.  Or too much house cleaning?  Better safe than sorry, I say.

That time I embarrassed myself.  The lupus was affecting my cognition, my balance, my whatever it was, I'm sure.  Did I just make a mistake?  It wasn't me, it was the lupus. 

Whether it is buying (or eating) something, engaging in or avoiding an activity, or explaining some shortcoming or discrepancy -- my new ace in the hole is simply on account of the lupus.

I played the lupus card to get A LOT of wonderful help moving (though I'm sure our sweet friends would have helped anyway).  Lupus got me out of months of laundry and other chores.  Really, I haven't found the bounds yet for exploiting this disease.

But, I plan to test those limits to their full extent in the months and years ahead.  I always hear people saying to look on the bright side, to take the good with the bad... that's just what I'm doing.  Making lemonade.


This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 5: More on the pit

Part 6: Exhaustion

Part 7: Saying no

Part 8: Taming fear and anxiety

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.

Friday, May 23, 2014

Having lupus, Part 8: Taming fear and anxiety

Maybe... to be fearful in this universe is an insult to God.
-Dallas Willard

This is one of the harder things for me to admit.  I have always wanted people to see me as strong, as bold.  But really, I am very timid.  And for years of big talk, I lived my life in fear.

I spent countless hours worrying and fretting.  Those hours are lost now with nothing gained.

Who of you by worrying can add a single hour to your life? (Luke 12:25, NIV)  Not me.  I tried.

I feared failure.  I feared losing blessings in my life.  I feared illness.  I have very poor vision that has continued to slowly deteriorate, and I have spent years gripped by the fear of future blindness.

Some nights I was so consumed with fear and anxiety -- over truly petty things -- I couldn't sleep.  It held me back.  I let it chain me down.  I let it have too much control of my life.

Then I was diagnosed with lupus.  The risk of a lot of things I feared increased.

You would think that my anxiety would go into overdrive.  But it didn't.  I reached a point where there was just too much to worry about.  I literally didn't have time to fret about it all.  And truly, this disease, it seems, has made time so precious to me.

This disease is unpredictable.  I don't know when I'll have a good day or a bad one.  I sure don't want to waste good days in fear.  And to take the time to worry about everything that could happen to me because of lupus would take all my time.

So, if I hoped to function -- and to live my life as fully as possible -- I had to learn how to overcome my fears.  This is still a work in progress.  This was not a post I had originally planned for Lupus Awareness Month.  I have included it for two reasons: (1) I noticed that fears were rising up in me these last few weeks and I have had to work to manage them.  (2) I see others who are gripped by the same fear and anxiety that used to consume me.  I hope for everyone the freedom I have found.  And if sharing my experience can help, then it is worth it.

I used to think that worrying about something might actually help in some way.  That if I could anticipate the bad things, I would be better prepared for them if they happened.  I had to make it to a place where I saw very clearly that Jesus is right: I do not gain anything -- not one thing -- through worry or fear.

Now, when I feel those old anxieties start to well up inside of me, I take a deep breath and I pray.  I pray often for the Lord to keep me calm and centered in His will and in His presence and His provision for me.  And when fear begins to creep in, I stop and pray specifically for that.  I tell the Lord bluntly what I am worried about, as trivial as it may be, and I ask Him to take care of it for me.

And with the relief of knowing the King of the world is on it, I then talk myself through my worries.  If it is a health concern, I remind myself I am doing everything I can to stay healthy and that I cannot prevent certain things from happening.  I just must wait and if an ailment hits me, then I will deal with it.  In the meantime, I will enjoy the measure of health I have been given.  Sickness, if it comes, doesn't equal failure.  And the Lord will see me through whatever is ahead just as He has seen me through to today.

Sometimes, I worry that I have messed something up in my life.  Maybe Johnie and I are having a disagreement or misunderstanding.  My hours can fill up with worry that I have damaged our relationship or deeply hurt him.  In those instances, I pray that the Lord will work out what I intended to do, not what may have actually happened -- or that He will repair any damage I did.

I also have a file saved on my phone, Encouragement, and I open it up and read over the messages I have written there until I feel calm.  (A few of the messages include: If I messed up, it will be fixed.  If I messed up, it doesn't mean I always will.  If I messed up, it doesn't define me as a person...)

Through prayer and intentional focus on specific truths in my life, I am thankful to live much more calmly and peacefully than I ever have before, even amid some of the most raging storms I have faced.

I understand that fear is a multi-headed beast.  And we all fight our own unique anxieties in our own specific ways.  I don't write this as a twelve-step method to overcoming fear completely.  I haven't even done that myself, and what may work for me may not work for you.

But as someone who lived life gripped by fear, I think I may understand a bit about what it is like to live life anxiously.  It is not the best way.  And whether it is through prayer, meditation on God's truths, or other coping mechanisms, I do believe that Jesus offers this freedom for all of us.  If you haven't yet, my hope is that you find yours soon.

Have I not commanded you?  Be strong and courageous.  Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
-Josiah 1:9 (ESV)


This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 5: More on the pit

Part 6: Exhaustion

Part 7: Saying no

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.

Sunday, May 18, 2014

Having lupus, Part 7: Saying no

Haha.  No.

All of my life I have had trouble saying no.  Partly because I really enjoy trying new things and can find a crazy adventure in almost anything.  Partly because I don't want to miss one thing.  Partly because I hate hearing no.  And partly because I express love and feel loved by spending time with people. 

Our friends in Kansas called Johnie and me the "yes couple."  (Which I take credit for.  I get the feeling he didn't get out much pre-marriage.)  Watching a movie, hanging out, eating out, camping, boating, community projects... If you asked, we'd be there if we could.

And that's how I've lived my life.  I said "yes" to everyone and everything I could.  It's how I worked full-time and went to school full-time and dated and still hung out with my friends.  Every few months (and almost every spring break, unfortunately), I would crash.  I would go to the doctor and be diagnosed with three or four things, and get shots and pills and have to stay in bed for a week. 

When the antibiotics were finished, I'd hit life full-speed again. 

There were times of transition -- like when I got married and when we moved back to Kentucky -- that I tried to live a more balanced life.  But always, inevitably, I'd keep saying yes and my plate would fill up and spill over.  Pushing myself to (past) the limit and then spending time on the couch recuperating was the rhythm I was used to.

When I started getting sick in 2012, I thought it was part of this cycle.  Except for I didn't really recover.  I just kept getting sicker.  And more frustrated.  I didn't bounce back after a week on the couch, and I wasn't willing to spend longer than that letting life pass me by.  Symptoms kept piling on until the spring of 2013 when I reached a new level of low.

I felt emptier than I have ever felt in my life.  Saying completely spent doesn't seem to convey just how completely spent I felt.  I felt broken, maybe even shattered, and wasn't sure if I'd ever feel unbroken again. 

I had to start saying no on a regular basis during those months because I just couldn't say yes. 

It was several more frustrating months until I received the lupus diagnosis (that I still have trouble accepting).  And while I wasn't ready to receive the lupus label, there was one thing I realized very clearly: Whether we called it lupus or an auto-immune issue, whether it would never get better or go away some day, it was obvious that my body was attacking itself.  And it was obvious that the harder I tried to push my body past its limitations, the more it fought back.

My 81-year-old grandfather had just started kidney dialysis treatments at that time.  They were painful for him, and I witnessed firsthand how artificial kidneys can change a person's life and schedule.  One of the most dangerous forms of lupus attacks the kidneys.  It can damage them irreparably.  It can shut them down.  It can require kidney dialysis or transplant.

It was the thing my rheumatologist -- and shortly thereafter, I, too -- was most concerned about. 

Receiving perfectly in-range kidney function test results was such a relief to me.  But, I reasoned, if I didn't make some changes in my lifestyle, the lupus that kept attacking system after system when I didn't slow down would eventually turn on my kidneys.

Maybe I overreacted or was being too dramatic, but that realization was sobering.  On those days when I was tired, or exhausted, or sick but I still wanted to do this or that thing, I asked myself: Is this worth the risk of kidney failure?  I know that pushing myself for a day or for a week won't cause my kidneys to shut down, but I also think there was a good chance that if I didn't slow down my life in general, I could very well be facing very serious health issues in the years ahead.

Turns out I didn't realize how much I loved my kidneys.  I'd rather spend more years with them than a lot of the things I used to spend my time with.  If I'm just not feeling well, then I (usually) stay home.  This one is hard for me.  Turning down movies, dinners out and event tickets goes against all my natural tendencies.  I usually cry when I'm staying home because I'm sick and missing out on something I really want to do.

I walked away from a job I loved because I didn't feel like I could manage my health and my relationships and still do well at work. 

But, on the positive side, having to say no so often when I'm sick makes it easier to say no when I'm not sick.  And, I'm learning, prioritizing things to say yes to even when I'm healthy helps me stay healthier longer. 

Pre-lupus any movie you asked me to see with you, I'd say yes.  Didn't matter if I knew I'd hate it.  You would like it and you wanted me with you, so I'd go.  Any store, any restaurant you asked me to go to, I'd say yes.  Didn't matter how I felt about them.  Now, if the movie doesn't look interesting, or the store isn't appealing, or the restaurant isn't what I'm craving, I'll just say no.  Especially if I finally got the house clean, still feel good, and am just getting ready to curl up with a book.  It's just not worth wasting my (now precious) energy on something I don't really want to do. 

My friends have been so sweet and supportive through this rough and crazy last year.  I had a friend call a few months ago and ask me to go out.  I was in my pajamas and dinner was already made.  Pre-lupus I would have thrown on jeans and put the food in the fridge.  I actually felt good and wanted to see this friend.  But I was craving what I had cooked, not what she was suggesting.  And I was looking forward to a quiet evening at home.  And I already had a busy day planned the next day.  So I said no.

I've said no to her before, and she knows a little pushing is all it takes for me to cave.  This time, I still said no.  And expected her to push a little more.  "Are you not feeling well?  Is it the lupus?" she asked.

I guess I could have said yes.  I almost did.  Technically, it was the lupus.  "No," I said.  "I actually feel really good today.  I just don't want to get out and I'm hoping if I don't push it tonight I'll still feel good tomorrow."

With that piece of information, she continued to push guilt-free, and I continued to say no.  I didn't go out that night, and I haven't done a lot of things I otherwise would have.  And while I hate having to say no as much as I do, I love the freedom I've found to say no to good things so I can say yes to even better things.


This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 5: More on the pit

Part 6: Exhaustion

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.