Why I won’t accept my illness, but I’ll accept the battle

I was once asked what I’ve learned from living with an incurable disease. I didn’t really have a determinate answer, but I did say having chronic illness has given me a deeper compassion, one I can’t quite explain. Being a young woman in her mid-20s, most people think I’m in perfect health. However, on the outside, I look nothing like what my body has really felt like for the past three years.  

Swelling, joint pain, raw stiffness, throbbing muscles, needle-burning pain and fatigue were just some of the things my body woke to one September morning in Colorado. My body was not my own; everything from my knees, shoulders, hips and hands were all in pain. I limped to my bathroom to brush my teeth, but my hand couldn’t hold the toothbrush.

I did the best I could that morning despite the overwhelming confusion and drove to work with just the palms of my hands to steer the wheel. After eight months of grueling doctor visits and pain that went unclarified, I was finally diagnosed with systemic lupus after my 23rd birthday. I’ve done everything from changing my diet, exercising, taking medicine — but nothing permanently takes away the flares of pain.

The word “accept” by definition means: 

A) To receive willingly.

B) To endure without protest or reaction.

I don’t accept lupus because that would mean enduring this disease without objection, which means no battle. No battle means I’m not fighting.

But I fight for normalcy despite pain. I fight for staying in a job I love despite the physical exertion it requires working with children on the autism spectrum. I fight telling my body every day that she doesn’t have to accept this disease, because isn’t that what we’re supposed to do when any kind of pain tries to become the boss in our own lives?

In the past three years, I’ve had my fair share taking extra pain pills in the mornings, canceling day plans and praying through sleepless nights. I know the forged feeling of putting a smile on your face in front of people when all you want to do is lie in fetal position in your warm sheets at home with heat pads. I know the feeling of adding layers of clothes to your body during the fall and winter because your body starts to flare — but it’s still your favorite time of year.

Maybe pain happens to people for greater purposes than we think. What if pain doesn’t have anything to do with what we put in our bodies, and it has more to do with something that can’t be seen but felt. Perhaps pain gives us a gift of something greater; a phone call to a family member we haven’t spoken to in a year or the courage to start something we’ve always wanted to. Maybe pain doesn’t leave because it’s supposed to keep teaching us something otherwise lost — something deeper, something that helps others and not ourselves. Pain is a bittersweet blessing in disguise in my life, and it constantly reminds me of others who are facing challenges.

I don’t know when this illness will go away or if a cure will ever be found. I don’t know how my pain will look like tomorrow or in the next week or month, but I do know how I can fight it.

I fight it by doing what I love, even if that’s altered in some way. I’ll keep teaching children and spinning them around in my arms on the days my hands and elbows haven’t given up. I’ll endure jogs on cold mornings when my knees aren’t swollen or my chest doesn’t ache. I’ll drive to a friend’s home to have coffee on the nights I’m not physically drained. And I’ll keep cutting my hair because Lord knows I can’t spend an hour every night brushing a horse’s mane. I’ll still lie on the autumn and winter ground, feeling the crunch of leaves beneath my feet or snow soak in my hair. I’ll keep giving and loving.

I’ll keep doing all these things because if I’m breathing, I’m counting my blessings. I hope you do too, dear friend.

**original article published on The Mighty here**

3 times a special needs child did the perfect thing, and they had no idea what I was going through

Throughout the three short years I’ve had of working with elementary special needs children, there have been several encounters that brought me to tears of joy. I feel like sharing three of these precious moments with you to let you know just how comforting a child that’s “different” really can be, even when they don’t know what you’re going through.

***

When Jesse hugged me after I was diagnosed with a chronic illness called systemic lupus in April of 2014.

Jesse had a traumatic brain injury. He also had a speech impairment and needed help in many different ways. I loved helping him. The day after I was officially diagnosed, I was sitting at the lunch table with Jesse in the cafeteria and he was playing with orange slices in his mouth. He put one in his mouth, like we all did when we were little to show the other person that our smile was in fact not teeth, but an orange’s skin. I giggled, but the smile didn’t reach my eyes. He looked at me for more than three seconds and said, “Nee hug.” He reached out his arms gesturing me to come to him, but it sounded more like, “Come he, come he.” I scooted towards him and hugged him, feeling like he became the adult and I was all of a sudden a child in desperate need of a hug. I instantly felt like everything was going to be OK. A child’s hug is everything.

Continue reading “3 times a special needs child did the perfect thing, and they had no idea what I was going through”

These two things made me fall on my face, yet more in love with love

This past year (2014) a couple things happened, were said, done, and felt. All these different things however made me grow more in love. I love love. Is it not the best feeling? I love learning more about God’s love and growing in it. I usually write to music and tonight’s music belongs to Steffany’s – No Fear in Love.

Continue reading “These two things made me fall on my face, yet more in love with love”

The best journal I’ll ever look back on

I'm super excited in seeing how God continues to teach me through this.
I’m super excited in seeing how God continues to teach me through this.

There are so many ways to document one’s life via social media today especially with facebook being a “timeline” and all. However, documenting one’s prayer life would be a little more difficult via something like instagram or twitter or whatever else is up and running today. I finally started a prayer journal. It’s helped me see things I need work on– things I had no idea were even an issue. I feel like sharing what prayer is doing so far in my life. This song is essentially self-explanatory about what happens once I start praying. He lights up my room and my life: When You Walk into the Room.

There are times in my life when I’ve questioned prayer and I choose to worry instead of pray. This is where I fail. However, in the moments when I choose to pray– w o w, no wonder God’s word says, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God” (Philippians 4:6, NIV). One of my biggest dreams in life is to adopt. My first blog post was in dedication to that dream and to Hope. My first mini internship was for an organization called Christian Alliance for Orphans, and it was during that time my hope to adopt only spurred on more heavily. Knowing the heavy need for children without families out there is heart-wrenching and sad. I long to be an adoptive mother to a child who needs someone to have dinners with, outside play dates with during the day, and someone to soothe them to sleep at night. I want to be a child’s forever.

I was flipping through my child hood bible and found this within the sheets. I must have written these when I was 10. I thought it was quite relevant to this post.

It wasn’t until somewhere in between my different doctor visits recently that a thought about China adoption I read a long time ago struck me like lightning. Applicant must be free of any condition that would affect lifespan or the ability to parent, including autoimmune diseases and lifelong conditions requiring medication. All of a sudden, I just felt sad. I started to have flashes of my doctor saying, “You will be on this medication for life,” and how I mumbled out words to him about what would happen to me if I just stopped taking medication all together. I wanted to be a magical fairy and tap my body with a magical wand. Zap . . . done. The pessimistic, realist, wrong part of me who doesn’t pray first would think, well you can’t adopt nowYou have a chronic illness, no cure, not ever. Give it up. However, the optimistic, fervent praying part of me would think, “My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever” (Psalm 73: 26, NLT). Prayer has helped me see I have an issue with worry. Worry and stress only add onto my shooting burns and flares. When you’re told you have an immune system that’s attacking healthy tissue in your body and it’s unpredictable, sometimes you just can’t help all the places your mind wanders. So then I get disappointed and it ruins me until I eventually get drained. My last check up I was told my lupus should stay the way it has been level wise, mild and non-affecting to organs. It’s only affected tissues regarding my joints. Okay, so I know what to expect pain wise and yet I still get worried and it hurts when I’m inflamed. So the two things I seem to worry about the most are my health and my future. When I feel helpless, I’m learning to pray instead of worry and journaling is helping me keep up with that.

One of the greatest realizations I’ve had doing this journal is that instead of thinking God needs to help me accomplish this goal or that dream, I get the sense He’s trying to develop my character through suffering more than anything. Regardless if I am suffering or not, I am praying for myself to stop worrying and for what other character traits I need work on. “Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope” (Romans 5:3-4, NIV). I know that I am young but things like adoption, stabilizing my career and financials, and taking in children that need families are things that I desire in life.

My young age is the time to make firm foundations for myself and there is nothing wrong with that. What is wrong, is when worry and doubt soak in the cracks of the foundations I am trying to build. My future doesn’t deserve that.

This was when I was on top of some rocks at Garden of the Gods when I lived in Colorado Springs, CO. God was always with me, and He always will be.
This was when I was on top of some rocks at Garden of the Gods when I lived in Colorado Springs, CO. God was always with me, and He always will be.

Worrying is something I’m giving up on. I’m crumbling it up in my hands, climbing all the way to the top of a mountain, and throwing it into the abyss. I’m climbing with God again holding my journal, and His hand in the other. He’s the lead— He’s much tougher than I am and I want Him to have all the control. No matter what storm comes my way I’ll always be okay, because I let God take the reins. The thing is, I don’t believe in magical fairies or magical wands. I believe in the power of God and the pen He holds writing my life story.

Maybe the bigger picture here above all else is learning to surrender my whole life to God, letting Him write it all. That’s it Savannah– just drop the darn pen. The journey of life is no simple thing but it is a journey— a prayerful one I want God to write. The only pen I should be carrying is the one to my prayer journal.

And it will be the best journal I’ll ever look back on.

More prayer. Less worry.