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.