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.”