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?"

"Up."

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

Thankfulness Project: Wrap Up

Can you see the holiness in those things you take for granted -- a paved road or a washing machine?  If you concentrate on finding what is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.
-Rabbi Harold Kushner


In the last ten days, as I've wondered what I would write about being thankful for if I could get any kind of internet connection or signal from my phone, or as I've taken care of my mom as she was sick, or as I've laid in bed sick myself, my mind has been flooded with possibilities. 

I am not trying to sugar coat things or put on a brave face.  I'm being honest.  There was only one day when being thankful didn't come natural or easy.  I don't remember which day that was.  But as I lay in bed exhausted I thought, "I don't even know what I would write about.  I don't even feel thankful."  I had to think for several minutes to come up with something.  That day feeling thankful was a chore.  And what I came up with was those things we are always thankful for. Platitudes.  Like God and His promises.  That was about all the thankfulness I could muster that day.

I said before that I wouldn't have taken this project on if I would have known everything that would happen this month.  Not because it was hard to feel thankful, but because it was hard to find the time and clear-headedness to write about it in the midst of it all.

But in these final ten days of November, I've felt especially thankful and at peace that my grandparents are back together again. 

You should know my grandparents raised me.  My grandmother cared for me straight from the hospital where I was born until I was 16 and she went into the hospital herself unable to care for me or others any longer.  She taught me and raised me up.  She gave me advice that I follow still today.  She believed in me and pushed me and guided me and corrected me and loved me like no one else.

Losing her is still the hardest thing I have ever been through.

And since the day she died there has been a void in my life.  She passed away 13 years ago, on November 27th.  I have been able to adjust to minutes and hours and days and weeks and months and years without her.  But never Thanksgiving.  She left and it became a restless holiday for me.

I loved and cherished my grandfather.  I was sad to lose him.  I miss him.  I started missing him before he even actually breathed his last breath.  I started missing him the day he couldn't talk back to me when I called him on the phone.  And I thought that losing him would feel like losing my grandmother all over again.

But it didn't.  It felt like they were finally back together again.  It felt peaceful.  It felt like a wrong in the world had been righted.  And while I couldn't sit at the feet of these precious grandparents I loved, I knew they were together.  As they should be.  I knew that when I would see them again, it would be both of them together.  As it should be.  And more than anything, I was more thankful than I can express for them to finally be with one another again.  The world knocked off kilter by her death was balanced out again.

And for the first time since I've been without granny, Thanksgiving didn't feel horrible.  I imagined their Thanksgiving reunion in paradise and I was thankful to be able to enjoy the day and enjoy the time.  I was thankful to just relax and not feel like everything was all wrong and there was nothing I could do to fix it.

In these last days of November, I've felt thankful for my mom and for my husband.  For my brother.  For family and for friends.  For sweet, sweet memories.  For grace and mercy.  For the Lord's provision.  I've been thankful for rest and relaxation.  For comfortable beds and comfortable chairs and comfortable clothes.  For medicine.  For understanding, sympathetic co-workers.  For food and for medicine.  For Coca-Cola.  For turkey.  For words and books and writing.  For snow and for rain and for sunshine.  For transportation and phones and texts.  For access to technology and no access to technology.  For air to breathe.  For cabins and vacations and seclusion.  For hot tubs.  For prayer.  For a break from responsibility and people who understand that I had to let the ball drop and will come back sometime later to pick it up again.  I'm thankful they're holding it for me until I feel ready.

I feel exposed and vulnerable without my grandfather.  I feel lost without his advice and guidance.  I've never spent more time in my life with anyone than I spent with him.  I could write a whole post about everything that frustrated me about him, but I could write even more about how smart and resourceful he was.  How he worked for my 29 years fixing all the broken things in my life.  I'm thankful for him and all that he was in my life.  And I'm thankful to know that he is finally getting to rest now. 

I'm thankful for his influence, and my granny's.  I'm thankful they gave me the strength to live life without them.  And I'm thankful for all the blessings from them and from the Lord.  I am thankful.  More thankful than words or blogs or actions. 

My mom said we should thank the Lord 800 million times.  I told her I probably wouldn't be able to do that.  She said I should ask for help then because she wasn't sure even that would be enough.  So as I feel thankful -- as we feel thankful -- I hope you can join us too.  And thanks.

Thankfulness Project: Day 9

It is of the small joys and little pleasures that the greatest of our days are built.
-Mary Anne Radmacher

Today I am feeling thankful for the simple pleasures in life. 

Waking up slowly without an alarm and listening to quiet in the morning.  A mug of hot tea.  A journal.  A book and long soak in a warm bath. 

Comfortable shoes and sunny weather.  The smell of sweet cinnamon pumpkin. 

Traditions established and observed and made new. 

Smooth dark chocolate.  Hearty beef stew.  Good food.  Delicious food.  Comfort food.  Exotic food and food shared with friends.

A hug from a child.  A room full of laughter.  Beautiful, sweet music. 

Love from a pup.  Watching goldfish swim.

A phone call, a card, a note.

Memories and pictures and long-standing inside jokes.

A feather pillow and soft sheets at the end of the day.