Two Years

I've always been a dates person. I remember dates like few other people I know. Dates I met people or did things, birthday and anniversaries, and random other dates that are pretty insignificant. But today is a date I make sure to remember. It comes every year. December, of course. Two years since my diagnosis. Hmmmm.

December

Decembers lately have had a patterns for me. And I’m not sure it’s one that I like.

In December 2007, my uncle got really sick. Shortly after the new year, we found out it was colon cancer, with a tumor roughly the size of a softball. Three feet of intestine later, he is cancer-free. But Christmas Eves will always come with memories of seeing him pass out from pain.

The following year, a man from our church was diagnosed with brain cancer. He’d had tumors two decades before, but they were back with a vengeance. The likelihood of him being around for the following Christmas was slim. He beat the odds, but in the spring of 2009, he went Home, leaving behind his wife and four sons and one granddaughter.

That same year, in 2008, I was diagnosed with lupus. I found out about this man’s cancer about a week before I found out what was going on in my body, and I am ever thankful to God for framing my illness with his. It was a great reminder that though my life will be forever changed, it won’t be shortened by any great amount. Still, that Christmas was surrounded by doctor’s appointments and blood draws.

This year, I was talking with my uncle, the one mentioned above, just a few days before Christmas. He told me that he had just received some news about another friend of ours. He and his wife have been on our teams forever. He and my uncle, with a handful of other guys, play disc golf almost every week. Apparently, for the last year or so, this guy has been experiencing weakness in his hands and stuff. Last week, it was named: ALS. Wow.

I don’t know why this is weighing on my so much. Whether is several Decembers of diagnoses or the thought that another dear member of my extended family is facing pain, illness, and impending death. Or maybe it’s the thought of this vibrant, energetic man laying in a bed, unable to move and fully aware of what’s going on, while his wife of who knows how many years sits beside him.

Two things give me hope in this. First, he is going on some experimental drug that should slow the progression of the disease. He’ll have more time with his kids and grandkids and wife. Second, and way more important, that he knows Christ. He’ll have a new body in heaven, where he will be reunited with all those he loves and love him.

But for now, I will keep praying.

Louisville

My dear friend lives in Louisville, Kentucky. But it’s not pronounced “Louisville.” It’s more like “loo-a-vul” or “loo-vul.” There are other Louisvilles, though. Colorado, Indiana, Georgia, Mississippi, Tennessee, New York, Nebraska, Illinois, Alabama, Kansas, Maryland, Quebec (Canada), and Belize (South America) all have their own Louisvilles. Some of them are pronounced as spelled, and others are more like “Louie-ville.” That’s where I live, I think.

Lately, the Louie part of my life has been much more noticeable.

The pain isn’t too bad. Some in my fingers and toes; small joints. Nothing I can’t deal with. But the fatigue is killing me!

A few nights ago, I collapsed into bed at 7, after doing my best to stay awake since 5. In the evening! Last night, I fell asleep at 5, slept through my alarm and woke up at 9 to a message on my phone. I did my best to be awake, and stayed that way for an entire hour, then slept for another 12. That’s 17 hours!

In the last few weeks, I’ve slept through my alarm more times than I can count. I can barely stay awake for anything. I’ve canceled big plans due to exhaustion.

Extreme fatigue is what took me into the doctor in the first place. Two plus years later, it hasn’t gotten any better. How is one supposed to do life? How is one supposed to live like this?

Bear Snores On

I flew across the country this week to visit some friends who moved away a few months ago. Tonight, Amy was reading books to her two year old before bed. One of the chosen books was called Bear Snores On by Karma Wilson and Jane Chapman. It was a pretty good book that I had never heard before, so I was listening and trying not to fall asleep.

The book starts out with the bear sleeping in the winter. He’s been sleeping for a long time. Then, the mouse comes into the cave and lights a fire. The bear keeps snoring. A hare joins the mouse and sleeping bear, more animals come in and they make food and eat and are noisy, but the bear continues to sleep. They make a stew and have a little party. The pepper from the stew floats around and causes the bear to wake up. We wakes up with a big sneeze.

The bear wakes up and sees that all his friends are having a party and lots of fun and he didn’t get to have fun.

Sometimes I feel like the bear. I miss out on a lot of stuff and fun because I’m sleeping. But at the same time, the bear has to sleep in order to function the rest of the time. I’m the same way. Sleeping is not an option. I have to do it to take care of me and function less like a bear, and in doing so, sometimes I miss out on things.

So, to all of you out there partying and enjoying your parties, I’m going to snore on.

Eyebrow Shaving

I’m listening to a book by Josh Sundquist called Just Don’t Fall. It’s about how he “overcame illness and … The book tells the story from his point of view, as a nine-year-old diagnosed with cancer, and follows him through the journey of leg amputation and becoming a professional athlete. I’m only 1/3 of the way in, but I’m thoroughly enjoying it. Josh tells it well, through the eyes of a child. Everything he didn’t and did understand about being sick and doctors and cancer and life.

He finds out he has to undergo chemo and it will cause his hair to fall out and asks his mom to shave it for him. His little brother, who is seven at the time, says he doesn’t want Josh to feel bad, so he asks his mom to shave his head too. Then, inspired, eighteen of their friends from the homeschool group and church ask to have their heads shaved. So, Josh and nineteen friends had their heads shaved. Imagine a bunch of 7-10 year olds, bald in solidarity.

Josh was impressed that his friends would do that for him and especially noted the love he had for his little brother. “That night, I loved Matthew more than I ever had in my entire life.” Something like that.

A few days later, it was time to go to church. What was left of Josh’s hair had fallen out and it was his first outing in quite some time that didn’t involve needles. Before leaving for church, Josh’s mother took him into the bathroom to use makeup and draw on eyebrows. It turned out to be a mistake, Josh’s eyebrows looked horrible, and all of the sudden, he noticed eyebrows.

He walked into his Sunday School class and saw his friends. “Several of them are the home school boys who shaved their heads for me. But I noticed today that no one shaved their eyebrows for me.” While he obviously appreciated the gesture of all of them voluntarily shaving their heads, he all the sudden realized there was something no one else would understand… except maybe other cancer patients.

This struck me.

There are a lot of people who love me, and I know that. Lots of them do great things for me and are very supportive. Still, none of them will ever really know what it’s like for me and Louie. Despite all their efforts, there is no way for them to shave their eyebrows. There will always be a piece of my life, my struggle, my disease, that no one can understand.

Dependent

Yesterday I realized I am completely dependent on drugs. Prescription ones, and not in the usual sense.

I take a medication to keep me awake. It’s a stimulant that affects my central nervous system, or something like that, to keep me from falling asleep. It is generally only for people with narcolepsy or severe sleep disorders. Last week, as normal, I refilled my prescriptions online so I could pick them up and fill my pill box. This particular one didn’t get filled because it needed to be approved by my doctor.

I had Saturday off, as in, I was in my jammies all day, and most of Sunday too, so I wasn’t that tired. But on Monday at work, I was really tired. I honestly thought I might fall asleep in the orchard, right around two in the afternoon.

That’s when it hit me.

I am dependent. I require drugs to live my life. Not to live on a rollercoaster of highs and lows and narcotics to numb the pain. My body doesn’t go through withdrawals (although some say this drug can be addictive) and I don’t feel this overwhelming urge to take them. No, I take drugs so I can live. So I can stay awake all day, or at least for more than seven consecutive hours. So I can have a “regular” job, or as regular as I ever will.

So here I am, dependent on chemicals for better living. But also dependent on Christ for everything else- especially on the days I don’t want to have to be on drugs.

Out of Words

I read this blog. The woman who writes it has had lupus for over a decade and is pregnant with her second child. I love her perspective on things because, unlike many other lupus blogs, it’s real. Some people write about all their “cures” and others just whine the whole time. She sees things how they are- yes, she’s on lots of meds and is honest about the fact that there’s no cure right now, yet hopeful that there might be someday.

Anyway, she wrote this one a few days ago. I feel like it so often! At the end of my work day, when I walk in the door, I am out of words. Few emails get returned, almost no phone calls get made. The amount of energy it takes me (even when not in a flare) to do my job, answer questions, and do silly things like go to the bank or post office is amazing. At the end of the day, I’m out of words and I just want to turn off.

This is one of those priority things. I have to decide what’s most important to spend my energy on. Right now, I need it for my job. In six weeks, I won’t have a job anymore, so hopefully I can make different decisions. My boss is pretty understanding, but we’re at a point in time that I need to work as much as I can and not take too many days off.

There are so many times I’m with people just trying to stay awake. Contributing isn’t even something I can think about beyond nodding occasionally. If I keep my eyes open and mostly upright in the char, I have succeeded. I can’t even count the times I spent an evening with friends and left thinking, “I have no idea what we talked about.” I hate it, but I don’t know what to do.

Between work and having family in town, I haven’t had a day to be “off” in weeks. I can feel it. I’m toast. This weekend, I’m making it a priority. No people (when I can help it,) no plans, no showering (if I can get away from it.)

Hopefully after a few days off I’ll replenish my word count.

Chemicals

This week, I saw a doctor who I had seen regularly for a few years, but now have not seen for nearly two years. Thus, I have not seen her since my diagnosis. She comes into the room and says, “So, you’re on a lot of new medications. What’s going on?”

At one point since being diagnosed, I was taking something like 22 pills a day. Not including random ibuprophen or Excedrin. All in all, I am very aware of the vast amount of chemicals I put into my body each day.

Last month, I started on a new drug, Provigil. It is used to promote “wakefulness,” but is very hard to get a prescription for because so many people abuse it. Pretty much, you have to be narcoleptic or have sleep apnea to get it.

For the first few days, I could very clearly feel it pumping through my system. The first morning I was on it, I nearly got in two car accidents! My head was mighty cloudy and I was feeling shaky. After a week or two, I didn’t notice it as much. (I also didn’t notice it making any difference in my wakefulness.)

A few days ago, I wasn’t feeling well. I felt like chemicals were pulsing through my veins again, even though there was no change in my meds. It’s an odd feeling because you kind of feel sick, but there’s nothing you can do about it. I sort of felt like I was in a chemical-induced stupor and just trying to make it through the day.

This begs the question: at what point is the cure worse than the symptom?

Full Steam Ahead

About a month ago, a friend of mine got married. She is obviously very excited and is loving being a wife. I read her facebook post one day about a day off she had with her husband. It said something along the lines of “Spending time with my husband means mountain biking in the morning, wakeboarding all afternoon, and playing with friends all evening.” While I was very happy that she was having such an awesome day with her best friend, my first reaction was “You can do that ALL in ONE day?!?!”

The thought of having that many activities, let alone the amount of energy expelled in each of those was mind-numbing. I can’t even really remember how I used to fill days before naps and movies. These days, I try not to work more than 6 hours, then take a nap, and if I’m lucky, I have no evening plans. Sometimes I got to church or have dinner with friends, but even still, I’m wiped.

Two years into this thing, and I’m still not quite sure how to do it.

It’s still hard for me to turn down offers and activities based on what I think my body will be able to handle. Sometimes I have an emotion slightly less than resentment for people who can work AND work out on the same day. It’s not their fault they’re healthy, just as it’s not my fault I’m not. That doesn’t make it any easier, though. It’s still hard for me to explain to my friends and family why I’m not chatty or running around or cognizant. There is no way for them to fully understand unless they’ve been in a position where they are at the mercy of their body. (Besides scheduling life around my pain and energy levels, there’s a million doctor’s appointments to juggle!)

For the last several weeks, Louis has been going nuts. Wreaking havoc on whatever he feels like. My stomach, my eyes, my neck and head, my hands. He’s been busy. Last night, I couldn’t fall asleep because my hands were so swollen, and when I went to work today, I was just hoping I didn’t have to do something that required folding them into fists, since it’s not possible at the moment.

Yesterday, I was hanging out with my friend who is pregnant, and she wasn’t feeling well so we left early. I didn’t mind leaving early, and I wasn’t feeling too hot either, but honestly, I was a little happy that someone felt worse than me. I’m not at all suggesting I’m glad she feels like crap, but it was nice that someone else’s body was calling the shots.

Today I went to the doctor, and he said, “Holy cow! Your neck is super inflamed. No wonder you’re in so much pain and feel so bad.” Has anyone ever heard of neck inflammation?

If this doesn’t get better, I’m getting out the prednisone and peanut butter.

For-Ev-Er

I’m “at that age,” as people say. The age where I am constantly going to weddings and baby showers. Recently, I was talking to a friend of mine who is pregnant and hasn’t been sleeping well. “Do you ever feel like you can’t catch up? Like you could sleep for days and lay on the couch and never feel better?” I stared at her, not knowing what to say. “Of course you do. Well, that’s how I feel right now. Never 100%.” Something like that. She continued.

Afterwards, I was thinking about it. I don’t know that I’ll ever feel fully 100% again. What does that mean? Do I have to do like in The Devil Wears Prada? “0 is the new 4, so 6 is the new 14.” Make it so my 60% is the new 100% for me? Is that fair? I was also thinking about the last several days I’ve had where I just can’t seem to feel better, no matter what I do or eat or work out or sleep or anything. (Since I don’t feel better regardless, I’m staying up late watching shows and eating crap. Remind me this is a bad idea.)

Sidenote: Last week, I was talking with my boss of 8 years about it. He was asking what I can and can’t handle at work with Louie. There was a part of me that left wanting to cry- I hate having to have that conversation and know what I “used to” be able to do is so far out of reach now. End sidenote.

All of this reminded me of a conversation I had over Christmas with a long-time friend of mine. She was asking me about Louie. Since we’ve pretty much been on opposite sides of the country since my diagnosis, it was her first time to really see me and ask questions. We talked about all sorts of other things as well, but I really only remember this part of our conversation. She asked the normal questions about how I’m feeling and what I can do to control it and all that. I told her how rare it is for me to have a day where I feel somewhat good and normal. Then she said it. “I hate even being sick for 3 or 4 days. Let alone… [she paused as she thought about her words, but I knew exactly what she was going to say.] …being sick forever.

Sick forever. That’s it. That’s me. That’s the sum of it. Unless God intervenes in a big way, or there are some huge breakthroughs in science, or I can get an immune-system transplant, I will be sick forever. Each day.

I generally like to offer hope or show my faith in God at the end of my posts, but tonight I just want to leave it at that. I know God is big and He’s looking out for me, but tonight I hurt, and I’m tired, and I’m not sure what tomorrow will look like with Louie. Tomorrow, when I wake up, I will have Louie to contend with, but I will have Christ to walk with.

[Sidenote on science- as awesome as it would be for the researchers to find a drug that drastically helped lupus and related illnesses, most of them don’t kill people. Personally, I’m glad there is more funding going to breast and pancreatic cancer and other diseases that regularly take lives. I also know that there are hundreds and thousands of people living with lupus who have it harder than I can even imagine. But still, it’s not ending their lives any time soon.]

Brian

Today, I’d like to share what I learned from Brian.

No, don’t worry, Brian is not another name for some random symptom or disease, he is a man that I met today. Actually, I met him once several years ago as I interacted with him at the recycling center. He was there again today. The question begs asking- how do I remember someone at the recycling center I met years ago and recognize that he’s the same guy from today?

Well, Brian is deaf. I’d venture to guess he’s the only deaf worker there who works with aluminum cans. Anyway, I was reminded by Brian today of a great lesson I’ve learned about people and especially about people with illnesses or disabilities.

Today I took in my cans. [Sidenote: I’m collecting pop cans to raise money to send kids in Africa to school. If you live in the area, would you mind saving some for me? I’ll pick them up if you let me know when.] I took in my 95 pounds of cans (can I get a WOW!) to get money for them to send to Uganda. Brian was there and helped me get them all weighed and whatnot. He went back to finish paperwork and give me what I needed to get paid, and as he handed me the slip, I thanked him in sign language. (One of my 3 words!) He smiled, and we said our goodbyes.

I went to the office to collect my earnings and went back to my car. Brian was standing by the entrance to the can place, sweeping, and he asked if everything went okay. I gave him an enthusiastic thumbs up. Then, he told me “thank you” in sign language and pointed to me, then said it again.

It made me wonder how many people come in and think he’s stupid or retarded or something. How many people don’t treat him like a person?

In the midst of my busy day and long to-do list, God gave me a clear reminder of what we’re here to do. Love people. In whatever capacity we can. Maybe it’s an extra pause when talking to someone; or a genuine thank you; or just acknowledging that they are people too. God meets us where we’re at and loves us as we are. He loves Brian, even though Brian can’t sing the best worship songs, or hear them for that matter, or do all of the things the rest of us can.

Personally, I’m thrilled that God isn’t concerned with the physical state of our bodies or that that qualifies us for service. So many of us would be screwed. I’m thankful that God put Brian in my life today. And I’m thankful that for all the things I have to put up with in regards to my body, I can hear the birds chirp, or the tractor run, or the oven timer beep. Somedays, it’s the little things.

The Naptime Conundrum

Naptime. A time of day often coveted by parents of young children and dreaded by the children themselves. What other time of the day do you have no one pulling at your legs, asking question after question, or coloring on the carpet? In fact, as I write this, I am babysitting a little one who is napping. Peace.

Such is not the case in the life of this woman with lupus. For me, naps are a necessity, not a luxury. Louie has made it clear that if he gets twelve hours per day to sleep, I can have the other twelve to do with whatever I’d like. If he doesn’t get what he wants, it gets bad in a hurry.

Most mornings, I run through my plan for the day and portion out my time. It will take me so long to get to work, and then I’ll be there until whenever, and drive home. Will I have time for a nap before I have to start my evening plans? (I only have set plans one evening a week, mind you.) Will I need to get off work early in order to nap? What if I didn’t nap? I could just go to bed at 7…

Daily, I have to decide what’s important to keep and what can go. The amount of people I can see in a week and invest in well has gone down quite a bit. Many times, I miss it more than I can explain. The things I love most are now given fewer hours, as Louie is more demanding than ever. I got a real good look at what my actual priorities are when I had to start cutting from the bottom and work my way up. There were some sucky decisions to be made.

In order to function sort of as a grown-up, I have to have income. Therefore, I can’t not work. But I can work less. Coffee with people all week has all but stopped- partially because of the time, and partially because of my reduced income. There are about half-a-dozen people I make it a priority to see, but anyone after that is just bonus. It’s rare now that I do lighting at church, which I love, but instead I am training new young pups to do my job.

Possibly the hardest thing has been to have less time and less energy to spend with my beloved high school students. I still give what I can, and often walk away spent. There’s nothing I wouldn’t give for them. My weeks are planned around making sure my Wednesday is set up for success- success in rationing my energy to have my best to give to them.

Over and over I have watched God give me exactly what I need right when I need it. It is true that He supplies our every need- even if it’s 14 hours to sleep, or to make it through the day without a nap. For that, I will rejoice… when I wake up.

Grace for Us

Over the last few months, I have been reading and thinking a lot about grace. Unfortunately, those of us in the Church are often the least able to extend it, and I have watched a dear friend of mine be the recipient of such ungrace. Thus, the search in my life.

Anyway, amongst other things, I am reading Philip Yancey’s book What’s So Amazing About Grace. In one chapter, Yancey describes all of the things that made the Jews of Jesus’ time unclean. You see, according to the law of Moses, there were several foods they couldn’t eat, along with other circumstances that made them unclean. If they were in a state of uncleanliness, if that’s even a word, they were not allowed to enter the temple or worship God, and in some cases, touch other people.

Having heard all this before, it was sort of old news to me. One thing, though, caught my attention. Yancey went on to explain that many people were banned from the synagogues and worship and declared unclean because of diseases. Rashes, sores, cleft palates, arthritis, any deformations, and countless other things counted people out.

That got me thinking.

I started wondering how many of us would be kept out of worship because of our disease. What if we were the ones who were banned from what we most wanted to do because of a circumstance we didn’t choose (and certainly don’t want!) For those of us with lupus, best known as the “look good, feel bad” disease, this may not be the case. Most people can’t see that we are sick, unless the unsightly “wolf cheeks” gets a hold of us for the day, and even then, some people may not notice. But what if lupus were more visible, like muscular dystrophy or Down’s syndrome or even skin cancer? People with these, not unlike myself, would be barred from church, from worshipping the God of the universe.

This epiphany led me to two other thoughts.

First of all, I am even more thankful that God sent Jesus to pay for my sins and that we are all saved by grace. We didn’t deserve it, and we certainly aren’t good enough, even the healthy ones, to earn it. Plus, since Jesus came, we no longer have to follow so many rules to get to God. Ceremonially unclean is not an adjective I ever have to worry about.

Beyond that, though, I wondered how much grace I extend to others- with physical ailments or without. When a man in a wheelchair comes to the door at a restaurant, do I get up to open it, or watch as he struggles. Do I hold the elevator or some other door for someone who may need an extra few seconds, or am I too busy? Do I forget to greet people at church because they are somehow different from me?

Sin is the great equalizer. We all are sinners. We all are the same. Even if we don’t look it. I am eternally grateful that Jesus broke down the wall between me and the God, and also the wall between me and people who don’t look like me. I’m glad God has grace for us, too.

Nothing's Gonna Hold Me Back

Often in my writing, I use songs as jumping-off-points for my musings. Oftentimes, they are worship songs that I hear at church or on the radio.

A few weeks ago at church, we introduced a new song by Tim Hughes, called “Holding Nothing Back.” It’s a fun song, with some good lyrics, but didn’t stand out to me. I’ll come back to it, though.

About two weeks ago, I had to make my very first employment decision based on Louie. I had been working 40 hours a week and preparing to move up to management, which would entail working 45 or more hours per week, but included salary and benefits. In a hard decision process, I realized that working that much wasn’t actually a reality. As it was, I was working and sleeping and working and sleeping. Everything else that I care about or enjoy had been cut out of my schedule. The only thing I had kept was a few hours of ministry per week, but that was about to get cut too, when I talked to my bosses. As hard as it was, I really didn’t have enough energy or strength to make the decision to work more. In hindsight, it was a great choice.

So, since I all of the sudden had a lot of time on my hands, I got to do more ministry. Due to some transition at church, there actually was a lot more for me to do than usual, which was exciting for me. Still working a few hours a week at my job, I was working 50-60 at church. Yes, it was hard, but relationships were growing, I was getting to do something I love and teach others to do it.

After an entire week of days lasting longer than they should, most without a nap, I drove to church in the early-morning hours of Sunday. The sunrise was beautiful! I went inside, and set up for a crazy day of artists and musicians and technicians and God. By this point, Louie was getting jealous of all the attention other things have been getting, and he started acting up. But then the worship team started running through the set for the day, including this song.

As I ran around like a crazy chicken, up into the catwalks, checking on painters, rounding up stage crew, this phrase kept running through my head. “Nothing’s gonna hold me back.” I was dancing!

Often, I think, it is our decision (more or less) what we’re going to let hold us back. Maybe we change our standards a little, and don’t get held back from what we love. (When I was 18 and 19, I did 30-40 hours of work at the church, the same amount at my job, and was in college full-time.) It would have been easy to let pain or swelling or exhaustion keep me from doing what I love, and what I had set out to do, but I didn’t. It was only by God’s grace that I made it, and did my job as well as I could.

Granted, finding the balance between what our bodies and diseases want and what we want to be able to do is tough. After spending 6 long days working, I felt like I had been hit by a truck, and spent an extra 6 hours in bed the following day. This, though, was worked into my schedule. I saved that Monday for nothing other than resting, giving Louie the attention he wanted, and doing silly things like laundry that had been neglected for a week.

What’s holding you back? Should it be? What do you want to do and how can you make it happen?

I read this quote on someone’s forum page, and it resonated within my soul.

“Perhaps we are like race horses - one of the old traditions was to 'handicap' the greatest horses so that they would not run away from the pack. They would pile on lead weights; whatever was needed to get up to the amount of weight the handicapper said they should carry. We're handicapped because otherwise the world could not keep up with us.”

What We Lose

A common topic in writings such as these is the amount of things we lose when we get sick. Some people lose the ability to walk, others end up losing their careers, and still others the ability to do what they love- be it working out, doing intricate work with swollen hands or staying awake all day. Yes, we’ve all lost something due to illness.

For me, the biggest thing that I’ve lost, specifically due to the combination of Louie and a full-time job, is the energy and time to spend with the people I love most. I have more or less pared down the relationships I have, into an amount I can handle to just a few, and even those are not where I’d like them to be, as I only have a few hours a week to spend with people. Most of the other things I can live with losing, but losing the people in my life is the hardest.

Tonight at church, we sang a song that thanked Christ for going to the cross and for giving his life. It got me thinking.

I wonder what Jesus’ childhood dreams were. Was He excited to become a carpenter, perhaps the best carpenter in Nazareth? Did He want to do something else? Was He hoping to get married and raise a family? As He got older, did he realize that those things would never happen?

The night before He was captured, in the garden of Gethsemane, He prayed that if God had any other way to accomplish His will, could the cup of suffering please pass by Him. Generally, people understand that Jesus was not wanting to go through the pain and suffering and dying He would experience in the next few days. I completely understand that. But, I wonder if there was a part of Him that wasn’t ready to die, as in, He had more hopes and dreams and things He wanted to do and accomplish.

Jesus was approximately 33 when he lost His life. If we remove the God-Man part of it, which tells us that He is alive in heaven, and only look at the part where He was human, our perspective changes. A big reason why God send Jesus to live here with us is so He could experience all the aspects of being human- all the emotions, growing up, pain, the flu… He felt sad at the loss of loved ones, maybe got made fun of as a kid, and I’m sure He had hopes and dreams for his adult life.

I look at my situation with Louie, and I know that the rest of my life is changed. I will lose out on some things I was hoping to do, but I’m gaining other things, like wisdom and patience. Did Jesus look at His life and circumstances and feel a sense of loss at what He wouldn’t have because of a life cut so short? He lost more to be our Savior than we ever will due to a disease.

More important, though, I think isn’t the amount of things He lost, but that He made the most of all the time He had, despite circumstances. Everyday was lived doing the will of God.

What am I using my time, energy, circumstances for? Does my sense of loss overshadow what I can still do?

What is Unseen

In my Bible, I have several passages next to which are marked “Louie.” These are pieces of scripture that directly pertain to illness in some way. One of which I was recently reminded of. It is found in 2 Corinthians, where Paul is writing to the Church in Corinth and reminding them of what they have learned, who God is, and encouraging them to keep going. The end of chapter 4 and the beginning of chapter 5 is where I have underlined.

That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever. For we know that when this earthly tent we live in is taken down (that is, when we die and leave this earthly body), we will have a house in heaven, an eternal body made for us by God himself and not by human hands. We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. For we will put on heavenly bodies; we will not be sprits without bodies. While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit. (v 4:16-5:5, NLT)

Wow. That is one packed passage!

Paul covers or dying bodies (and who doesn’t feel like their body is dying with lupus or something else?), our troubles are small in comparison and won’t last long compared to eternal life in a perfect, painless body (but sometimes our troubles don’t feel small!), and some of those troubles are unseen (hello, invisible illness). Yes, we grow weary in our present bodies- the constant pain, swelling, or malfunctioning is exhausting! We groan and sigh and just would like to get cash for clunkers for the ones we live in! But Paul reminds us that God has prepared us for this; that he is taking care of us, and in the end, we’ll get a different dwelling place. How nice does that sound!

The part that most popped out to me today was the part about focusing on the unseen (v 18). (In most translations, it reads: So we fix our eyes not on what is seen, but on what is unseen.) Many autoimmune diseases are known as “invisible illnesses.” When I first started researching lupus, the two common phrases I found were “but you don’t LOOK sick” and “look good, feel bad.” Both are true. Fortunately, and unfortunately, lupus isn’t a disease that most people can see when they look at you. Sure, maybe you have a bit of a rash on your face, but other than that, nothing physical, generally.

The funny thing is, oftentimes when we’re sick, what remains unseen is all that we see. Honestly, I look at everything, every plan, every trip, every job, through the lens of lupus. How will it affect my health? Will I be able to nap? What about when I need to take my meds? In our case, what is invisible is seen, and is not what we need to focus on.

After this life on the earth, our bodies will become worm food. The pain will be gone. The swelling will disappear. The rash will vanish (haha!) That body, whatever it looks like, is the one that will last forever. I plan to use this body completely up, wear it out, before I’m through with it. And, most days, it seems Louie is helping me do that!

I’m not saying that I’m not going to take care of myself- take meds and naps and things like that- but I’m not going to let the Louie-colored glasses affect my decisions on how I live. He will not keep me from truly living. Yes, my life is altered from that which I was hoping to live, but I can still live well. Louie will not change how I love people, or the dreams that I have. I’ve lost so much to him already that I can’t afford to give up anything else.

In fact, the week I told my parents and extended family of my diagnosis, I also told them that I was spending 6 weeks in East Africa that summer. Yes, there were lots of questions and concerns, but my doctor said it was fine, and I can’t imagine not going!

Our light and momentary troubles are just that- light and momentary. Even when they don’t seem like it. When arthritis swells up my hands and I’m in pain and can’t hold a pen, that’s what I think about. But, that’s not all that life is or all that God has for me. These things will soon be gone, but God lasts forever.

The invisible-seen things should not keep us from the life God planned. And, those things, such as invisible illnesses, should not be our primary focus. “We fix our gaze on things than cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”

Four Hours

A year into this journey, a year from the date I count my medical life “changed,” a year since someone put a name on it, I still go back and forth.

Some times, I lie in bed and wonder “am I really sick anymore? I don’t feel sick, and I’m not as tired or in as much pain as I used to be.” Then I realize that I’m in bed at 3 in the afternoon for my nap. In order to survive and somehow thrive in this new world, I have had to make some big changes and small ones. Most of the big ones have been how I handle my schedule and how much I sleep. Several months ago, I figured out that 12 hours per 24 is my optimum. 10 hours at night with a 2-hours nap. If I do this, I can function more often than not. Essentially, I schedule in times for naps and sleeping like I would appointments.

Right around the one-year mark, I got a job that I love. Full-time. That means at least eight hours a day. It took some getting used to, both for my body and mind, after two years of no set schedule and more or less doing as I please.

If you take the amount of time everyone is allotted in a single day, 24 hours, and subtract the 12 I am sleeping, or resting, you’re left with 12. Then, subtract the 8 that I’m at work. Four hours. Four hours is all you’re left with. I have four hours a day in which to live my regular life. This includes getting up and getting ready for work, unwinding after work, doing laundry and cleaning my toilet. You know, the stuff that has to happen on a regular basis. But also responding to the demands of my parents, my brother, my sister, my dog, my ministry, my grandkids, doctors appointments, my friends. Not to mention if something crazy happened like I actually wanted to do something specific just for me! Four hours for doing hobbies and making presents and writing letters and spending time with God and journaling and writing and watching movies and just being.

Now, maybe I’m exaggerating a little. I don’t work every day, just five days of every week. I have two days a week off. This leaves me with 44 expendable hours each week. Sounds like a lot, doesn’t it? Almost two full days worth of hours. Well, assuming the regular person works 40 hours like I do, and sleeps 8 hours a night, he or she is left with 72 hours. Ouch.

On my two days off, I sort of have a schedule as well, only because schedules work for me. One of them is Sunday. Some Sundays, I get to sleep in and go to evening service. Other weeks, though, I get to get up at 5:30 to be at church at 7 so I can do lights (which I enjoy doing.) Then, either before the night service or between services or whenever we can work it out, I get to hang with my sister in some capacity. Sunday is her day. On my other day off, during the week, I schedule any appointments I need to hit and then hang with another dear friend of mine. Good thing I don’t have more than two friends, because I don’t have the energy more! I love knowing that my days off are spent with those I love most.

There are a few other people I’d like to see and go to coffee with, but when? I want to see my grandkids and connect with them and see what’s going on in their lives beyond what they post of Facebook. The only times left are in the evenings or right after I get off work on the days I open. Scheduling gets further complicated when we factor in their schedules, as high school and college students tend to be busy.

All this to say, four hours a day is not enough. I want to be able to see my sister more than once a week. I want to have more time for other relationships and other things I want to do. I’m just not sure how to make that happen.

Still Me, Plus Lupus

Why the title?

I’ve been debating for months whether or not I wanted to start my own blog. As an avid blog reader, I’ve gone back and forth on whether or not I wanted to put my heart on cyber paper and publish it. Finally, I decided to go for it. Part of my decision came from the knowledge that writing helps me process so much better, and the other part is from knowing how much reading others’ blogs have helped me. Hopefully, this will be a little of both.

Then, I had to come up with a name. I wanted to have a clever URL, but one that people will remember and that means something. The term “I’m still me” comes from the title of a song by Williams Riley. The song tells of an aged man, knocking on the doors of death in his weathered body, yet, in his head, he’s still young. He’s still who he was in the good ole days. The first time I heard that song, I echoed the sentiment. “I’m still me. Beyond the lupus, beyond the pills, underneath it all, I’m still me.” I think mostly I needed to remind myself.

Shortly after my diagnosis, my sister named my lupus “Louie.” We generally refer to him has a separate entity. Some days, I spend the whole day with Louie, just taking care of him. When I wake up and find malar rash all over my face, I look in the mirror and say, “Good morning, Lou.” We both figured that since lupus is going to be a part of my (our) life forever, he might as well be embraced as part of the family.

The “plus” part in my title is really the kicker for me. In my first few months of processing my diagnosis, I read a lot and did a bunch of research. In an attempt to find someone else who got diagnosed and continued living well in spite of a chronic illness, I picked up Michael J. Fox’s book, Lucky Man. In it, he tells the story of admitting to his young son that he had a disease, and how willing Sam was to accept that. MJF continues, “Clearly, to Sam, I was still ‘Dad,’ just ‘Dad with a wiggly hand.’ Was it possibly that I could look at things the same way, that I was still me—just me plus Parkinson’s?” (p 192)

I have tried to embrace that thought. I’m still me, just me PLUS Louie. He’s a bonus. If you have me over to play games, Louie comes too (sometimes playing extra games of his own.) If I get you a birthday present, it’s from me and Louie. If I come to you wedding, I come, plus Louie comes. (Should I RSVP for 2 and get to eat extra?)

Louie is sort of like my small child- he goes everywhere with me. Except I’m not allowed to hire a babysitter.

So that’s the long and short of it! I’m still me, just with Louie as a bonus.