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.